Matthew's Road

2 New Amazing Reports . . .

2010-10-27T09:11:00.001-05:00

Matthew saw Dr. Fortuna on Monday and you're not going to believe this!!! . . . we are being released from his care. Matthew is doing so well that Dr. Fortuna said he sees no reason why he needs to see us anymore. We are being released back to his cardiologist to follow his care. I couldn't believe it. His chest x-ray looked great and he said we can return to normal (reasonable) activities in 2 weeks. YEAH!!!! We see Dr. Hasselman, Matthew's cardiologist, on November 4th for an echo. Hopefully, that looks great and we can start seeing less doctors. He is becoming active and returning to his normal self. We can't thank Dr. Fortuna enough for his amazing care. He is a very impressive surgeon with such a kind personality.

As for our other news...this one shocked us the most. Matthew and Taylor are going to be a big brother and big sister!! Yes, you read it right, I'm pregnant. I saw my OB doctor yesterday and everything is looking good. I have low progesterone so I will be getting shots twice a week. This Friday, they are going to teach Craig how to give them to me. I think he is too excited about getting to do this. As most of you know, I've had issues getting pregnant in the past and my Doctor told me he has no idea how I was able to get pregnant with some of my problems and this must be a God thing. Now that we are past the shock, we are very excited!!!

We know all of you have been amazing prayer warriors for us so we would like to request your prayers for this baby's heart. My OB doctor said the next few weeks are critical because the heart will finish developing. We are praying so hard that his/her heart will develop with all valves and all 4 chambers and that everything is where it should be. Please pray with us!! We will see a high risk pregnancy doctor around 16 weeks for a 3D sonogram to check the heart. We know several families who have a heart child and that have gone on to have several more children with no problems so we are trying not to worry. I'm just taking it easy and we are going to sit back and enjoy every minute of this little miracle too. Matthew has informed us that he wants a baby sister. I guess Taylor has made an impression on him...that or she threatened to hurt him if he didn't say baby sister.

Well this seems to be enough big news for this week. Please keep us in your prayers.

An Amazing Moment . . .

2010-10-22T09:09:00.000-05:00

If there is one thing that has changed us during this journey it's the fact that we cherish the little things. We no longer take for granted all the milestones that our kids take. The last couple of days, Matthew has started this new routine of wanting to run fast. He will say, "Watch me run, I'm fast" and then he takes off running like a wild man. He gets so excited and will say, "I do it again." Yesterday, Craig and I were cheering for him for a half an hour while he ran and then I started to cry. It was amazing to see our boy running with so much energy and he wasn't breathing hard and he stayed pink. Wow, what an amazing thing. We are so blessed!!! I used to give him his bath and he would get cold and turn some crazy shades of blue. Last night he was cold during his bath and stayed pink. I'm overwhelmed with excitement as I watch my little guy being able to run and not struggling to catch his breath or that his body is able to sustain high oxygen levels even when he is cold! These new milestones have me teary eyed and made me realize what an amazing miracle Taylor is too!!

This journey has been worth it's ups and downs and Craig and I have grown stronger. I was talking to Melissa (a fellow heart mom) about our kids yesterday and how lucky we are to be chosen as parents of these heart kids. We are excited to see what they do with their lives because they are fighters and I think they will accomplish everything they put their heart into. I also want to thank Melissa for being a strong support for me.

Thanks for letting me brag a little okay a lot but I'm so proud of Matthew. Have a great weekend and enjoy this beautiful fall day.

On the up and up road . . .

2010-10-21T09:21:00.003-05:00

Just wanted to let everybody know we are doing great. Matthew is gaining strength every day. We go back to see Dr. Fortuna on Monday with a chest x-ray so let's pray that everything still looks good. The next week we go to see the Pediatrician and the Cardiologist. Lots of appointments but we don't mind going just to hear good reports. Our biggest issue right now is being stuck at home. It takes 6-8 weeks for Matthew's immune system to rebuild itself so no public places until then. The other fun thing is that we can't pick him up under his arms so that his sternum heals. That was a lot easier when he was a baby. We are getting pretty good at scooping him up by his legs. Thank God he doesn't weigh a lot. Although, I am ready for him to gain his weight back.

Here are a few fun pictures from the past 2 weeks.

Matthew with his favorite nurse, Kris, right before we left the hospital

Matthew and Daddy as we were leaving the hospital.

After we got home, Matthew fell asleep on the floor. He was nervous to be on the couch that he would fall. He was very protective of his owies.

Spending some movie time with Sissy.

I was trying to get some pictures to make his birthday party invitation. He is a Toy Story nut so we are having a Toy Story party and he is going to be Woody for Halloween. You can tell from the picture on the top that he wasn't happy about this photo shoot but he was happier outside so that is the one we are using for his invitations.

Great News . . .

2010-10-13T22:39:00.000-05:00

Matthew woke up this morning with his rash half gone. As the day passed the rash has faded more and more. I finally heard from the surgeon and all the lab tests came back within normal limits. We are thinking this is a reaction to one of the meds. Dr. Fortuna wants me to only give Matthew 2 of his meds at this time and talk on Friday. We were so relieved when he woke up looking so much better. He was up playing today and talking up a storm. What a trooper!!!

We know this was a huge answer to prayer so thank you to each and every one of you who had a part in it. We were thankful that the blood cultures came back negative. Hey, we are back on the road to recovery. I knew Matthew was starting to feel better because he and his sister start fighting this afternoon. Back to normal!!!

Our spirits are lifted and we are looking forward to getting back to an everyday routine. On another note, I would like to thank all of our church family for providing meals for us the last 2 weeks. It has been wonderful to have one less thing to worry about. We are amazed with your love and support and we truly feel blessed to have such an amazing church family. We love you and can't wait to back to church as a family real soon.

Waiting for test results . . .

2010-10-13T09:30:00.000-05:00

We went to see Matthew's surgeon at 6:00 last night. He was confused as to what this rash is and what is causing it. He came up with a couple of ideas. One is that it is an allergic reaction to one of his medications so he stopped all meds. We are going to start them back one at a time. His other idea is that it could be viral and would have to run it's course. The last idea is that it's something that a blood culture would show us. For example: endocarditis, staph infection or multiple other types of infections. He debated if he should admit us for observation but decided to have us go get the blood draws and he would call us later that night if his white blood count was elevated. The blood cultures take awhile to come back. He is going to call us later today and possibly repeat the labs this afternoon to compare them to last nights. His other concern is the low grade fevers. He told us if they hit 101.5 again then we are to take him to the PICU for an admission. We hit 101.1 but Motrin took it down. No fever this morning and his rash is half gone. Confusing - I know!!! It makes me think maybe it is a medication but I have no idea.

We are praying hard and trusting God to give the doctors answers. This is such an emotional ride. So many times I would do anything to trade places with Matthew so he wouldn't have to go through all of this pain and not feeling good. It is so hard to see your child hurting. When we pulled into the hospital last night he cried and cried. He said, "I don't like my hospital." We are getting to know the lab techs and x-ray techs on a first name basis. They are so good with him and they don't seem bothered by his screaming fits. One day this will be behind us but right now it feels like it is lasting forever. We are in better spirits this morning and I know that is because God is carrying us right now. I know you have heard this a lot but we are so thankful for your prayers. It is amazing how many times we have hit our wall and you all start praying and within a few hours Matthew starts improving and we are lifted. I was reading in my Bible last night and read the verse, "I can do all things through Christ." How true, we can do this if we do it through Him.

I will update after we hear the test results.

Frustration . . .

2010-10-12T15:40:00.000-05:00

I was at the hospital for 4 hours yesterday. X-ray was backed up which made us late to see Dr. Fortuna. Then we had to wait a long time there too. It was worth the wait because we received a great report. Chest x-ray looked wonderful and so did his blood work. Oxygen saturations were 96 - WOW!!!! We are staying on all the same meds and going back in 2 weeks.

So here is the crazy news. Matthew has been running a low grade fever for several days and Dr. Fortuna was thinking it may be his body trying to recover but we should have the pediatrician look him over on Wednesday ( an already scheduled appt) for an ear infection or something else. If any new symptoms appear to call right away. Well. . . . . . . . . we woke up this morning with a new rash that looks like he has a sunburn. We saw the pediatrician (a 2 hour wait - UGH) and she thought he may have scarlet fever from strep throat. His throat culture came back negative so it's not that. She called the surgeon and he was in surgery so they were going to have him call her back. She sent us with a script to draw blood cultures but wanted us to wait and see what else Dr. Fortuna wants us to do. Dr. Fortuna is to call us when he gets out of surgery. We are still waiting. . . . . . . . . . the rash is spreading all over his head and face and has moved to his belly. He is itching like crazy but it is very different looking than the yeast infection rash. One concern is endocarditis, a infection around the heart. We hope not but at this point nothing shocks us. We are waiting for the call to head to the hospital. Please pray they figure this out soon. We will update after the blood cultures and talking to Dr. Fortuna.

Dr. Appt. Today . . .

2010-10-11T09:08:00.000-05:00

We are trying to get back to normal at home. We haven't made it yet. It seems like we are still recovering from the sleep deprivation and stress. Matthew is sleeping well and getting around better. He moves slowly to protect his owies. Our biggest challenge is getting him to take his medications. He was great at taking medicine before surgery but he got sick one night when taking his meds and it has made him hate them. He keeps telling us I'll get sick. Of course it doesn't help that he is a little stubborn ( I have no idea where he gets this). He takes 4 medications in the morning, 3 at lunch, 2 at supper and 2 at bedtime. Two of these medications are for the yeast infection so they will be done by the end of the week. His yeast infection looks so much better.

Our other challenge is getting Matthew to eat more. He is a picky eater and has become worse. He's on a low fat diet so that makes it harder. I went to the store yesterday and bought everything I could find that was low fat. We kept his diet pretty healthy before surgery but the boy loves cheese and milk. He likes the full fat stuff but seems to be adjusting to the skim milk. I would love any ideas for some low fat snacks. We started Carnation Instant Breakfast with his milk and low fat pudding and yogurt to help with adding calories and not fat.

We go to see Dr. Fortuna (his surgeon) today. We have to get blood work and a chest x-ray before the appointment. They are going to see if he has developed any effusions (fluid around the lungs). They will adjust his Lasix accordingly. He really fills a diaper after taking the Lasix. Thank God for Pampers, the only diaper that doesn't leak from the diuretics. I will update this afternoon after the appointment. Our appointment is at 1:50.

Thanks for all your prayers and support. We would have never made it without them!!!! I've had several emails requesting some pictures so I will post some later today. I apologize for the lack of updates at home. We felt a little overwhelmed with trying to get back into a routine.

Home Sweet Home . . .

2010-10-07T16:38:00.000-05:00

We are home!!!! I know, I know - hard to believe!!! It has been crazy since we pulled in the drive at 2:00. Matthew is very weak so he has stumbled twice and I caught him. Yikes!! We are trying to get things in order and get all his meds picked up. I will post more details as we get settled but we wanted to let all of you know we are HOME!! Can you tell that I'm excited.

Ready to Move Forward...

2010-10-07T07:36:00.001-05:00

Yesterday was a very long day, but as it drew to a close things were starting to look up. The rash had Matthew completely miserable for most of the day and to make things worse the surgeon planned to work on Matthew at 11:00 but couldn't make it to his room until 4:00. By the time 4:00 rolled around Matthew was miserable from his owies and the rash and was convinced that we were trying to starve him. As Matthew's room began to fill with people to help out he became very agitated and ready to fight. After giving him what the surgeon described as "enough drugs to put a lumberjack to sleep for 12 hours" Matthew was finally relaxed enough to let him go to work. He didn't actually fall asleep until they were done.

We took this picture immediately after they were finished. As you can see, the bottom part of Matthew's belly was completely raw and the rash was all over his chest scar. They took all of the bandages and tape off of his chest and set up an oxygen mask to blow directly on the rash to help it heal.

In the end, it was just enough to give Matthew a relaxing 3 hour nap. Thankfully, he woke up in a great mood and was ready to eat, play and laugh. Good times...

Roller Coaster Ride . . .

2010-10-06T13:06:00.000-05:00

Okay, I'm probably not the right person to be writing this post due to my complete exhaustion but bear with me. Our roller coaster ride has taken a temporary down hill turn. Matthew started getting extremely irritable last night. I pulled his blanket down to find a terrible rash around his incision and all over his belly. He became very agitated and couldn't sleep. The Nurse Practitioner who worked last night determined it was a yeast infection but the cream she prescribed did nothing for the itching. He was up most of the night. He had these nasty night sweats and we changed his bedding twice. Finally, they gave him some Benadryl and he slept for 2 hours. He woke up at 4:30 screaming for me. I discovered that during his intense itching he pulled the surgical tape off his incision and had worked loose all of his dressings. There is concern that if he continues to scratch at it he will end up with a staph infection. We had that after his first surgery and don't want it again!!!! Thank God Dr. Geiss rounded early this morning. He confirmed it was a yeast infection resulting from a greenhouse effect. He has all of these bandages and tape all over his chest and belly which makes things moist and causes yeast to grow. He made the decision to pull his RA line and pacing wires. They will sedate him and Dr. Geiss will do this procedure. They have everything ready including a blood supply at 11:00 but Dr. Geiss has been held up so we are waiting.

I know his heart is strong so we have a lot to be thankful for but wow this is starting to wear us down. Our mental state isn't so great today. Sleeping for 2 hours and stressing all night just wears you down emotionally and mentally and physically. Taylor is starting to struggle at home and has said some pretty sad things. Craig needs to go back to work so he is dealing with all of this plus work. Please pray that getting everything off of him and the antibiotic will make him feel better and we start going back up hill. Also, pray that we bounce back emotionally. Your prayers have made a difference every time we post specific concerns so please keep praying!! We will update after the procedure is done.

A Great 24 Hours . . .

2010-10-05T11:10:00.000-05:00

Dr. Matthew Orwig

Checking his doggy's heart. His doggy gets medicine when he does.

Pulling Matthew's chest tube went great yesterday. He ate a great lunch and a little for supper last night. We are making some major progress. They rounded this morning and decided to pull his other chest tube and the ART line. This mean we can get up and take a walk to the toy room!! He is a different little boy in the the last 24 hours. He is much calmer and talks non-stop. We are starting to see our little boy's personality returning. Craig stayed with him last night and he slept for 6-7 hours. Wow we are moving forward!!

Pulling Drainage Tube at 11:00

2010-10-04T11:00:00.000-05:00

They rounded this morning and they have decided to pull Matthew left drainage tube. This is the one that seems to be causing him a lot of pain. The will give him some heavy narcotics sedate him and then pull. We will let you know how it goes and give a more detailed update. Please pray this isn't too painful.

Things are calming down . . .

2010-10-03T22:39:00.001-05:00

As you can tell from a couple of Craig's post last night that Matthew had another rough night. Dr. Geiss came by this morning and went over all the tests and they have determined that Matthew's pain is from his drainage tubes. They would like to pull them but he's not eating enough. They started back up with some narcotics to help with the pain which made me nervous since his stomach still has issues. Thanks to everybody's prayers he finally pooped today which means his stomach is waking up. The best thing was that he went 5 times!!! Seems crazy to be bragging about this but it was becoming a major problem. He ate a couple of crackers, part of a bag of pretzels, 4 slices of banana, 5 bites of rice and 4 bites of mashed potatoes today. He also drank a little. We are hoping to keep moving forward.

So many of you have asked for specific prayer requests so we would love to share those with you:

1. He starts eating and drinking regularly
2. He continues to have bowel movements
3. That they are able to pull the drainage tubes soon
4. He remains with no effusions after eating (fluid around the lungs)

Thanks for all of your prayers today. Look how well they worked.

On a fun note, Matthew was a character this afternoon and was talking up a storm. It was wonderful to see him happy. He was feeling better with the pain meds and being able to poop. He named all the fish on the ceiling (Grandma Fish, Grandpa Fish, Mommy Fish, Daddy Fish, Sissy Fish, Gracey Fish and Zavier Fish). We had a few visitors and some special honeymooners. I was in a wedding yesterday (Craig was suppose to be but somebody needed to stay with Matthew). The wedding couple, Heidi and Fred (by the way, we introduced them!!!) came by for a visit and brought a big doggy that Matthew loved.

A visit from Grandpa and Grandma Orwig. They brought him a book that has buttons which makes noise and Matthew decided to operate it with his foot.

Sissy came for a visit and he was excited to see her as she was him. They watched a movie together and it was so good for the both of them!

He kept an eye on her because he didn't want her to leave.

We would like to say a special thanks to our church family. All of your emails, phone calls, visits and prayers have meant so much. We love you and can't wait to be back to church with the whole family.

By the way, today was my Mom's birthday and I forgot until this afternoon. My mind isn't functioning too well these days. So if you see her tell her Happy Belated Birthday to make up for my forgetfulness!!

Blood Test Results...

2010-10-03T06:34:00.000-05:00

Matthew's blood tests indicated no sign of Pancreatitis this morning. Still not sure what's causing his sudden chest paid. It seems to be happening every 2-3 hours. He had multiple x-rays taken this morning and we should get those results by 9 a.m. The popular opinion has now changed to drainage tube complications. He is now back on one of the narcotics for this pain.

New Concerns...

2010-10-03T02:09:00.000-05:00

For the second time tonight Matthew has woken up screaming and clutching his chest. Tests are planned for morning. This could be a number of things but Pancreatitus seems to be the popular opinion. Why couldn't this happen in the morning so they could do the tests right away???? Instead we have to wait the entire night and pray that is doesn't happen again. He looks so confused and scared...I'm sure I do too.

Spirits Are Lifted . . .

2010-10-01T23:37:00.002-05:00

I was looking back over our last several posts and realized that I was sounding very negative. I have to admit I was feeling down and had hit this wall of not knowing how much more I was going to be able to handle. Craig has been so strong for me. He amazes me with his ability to stay so calm. I'm so thankful that he stayed last night. I think I would have been a mess to see Matthew vomiting blood. I went home at 11:30 p.m. and I called Craig at 5:15 a.m. to see how things were going. Needless to say, I was in the car racing to the hospital. He vomited at 2:30 a.m. so I'm not sure why I felt the need to come so quickly but I needed to be here. Craig had decided not to call me so I would get some rest (he thinks I haven't been eating or drinking enough) but when I got here he looked so drained. You could see the worry all over his face and that's when I lost it. Both of us cried wondering how much more can we see our little guy go through.

This evening, Matthew was resting comfortably so my parents stayed with him so we could go to dinner together and get away from the hospital. That really lifted our spirits. In our conversation, I told Craig that when I was driving today I was praying out loud that God would take care of Matthew and was questioning why he is going through this. The same song came on WCIC that helped me during his other surgeries and it's the ring tone on my phone. "Praise You In The Storm" by Casting Crowns. I ignored it because I wasn't in the mood to let go and let God take control. Talking to Craig reminded me of it and I told him that it was time for me to stop questioning and praise God in this storm. I know that God has answered so many of our prayers but I lost sight of it today.

Here are some of the lyrics that touched Craig and I:

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

It's true. God is holding every one of those tears that Craig and I have shed the last few days and He has never left our side. Our hearts are torn but how can we not praise Him for what he's done. He has done so many miracles in our little guys life. Look at how he runs and plays with half of a heart! Matthew pulled through surgery with a strong heart and no complications. That was God! So we are remembering all that we have. We have walked out of this hospital many times with Matthew by our side and there are so many parents ho have to walk out without their child....their child never gets to go home.

Thanks for praying for us too. Your prayers helped us clear our vision tonight. We are still in this storm and we are going to do our best to to let God take control and praise him.

I will update in the morning with Matthew's progress. Thanks for listening!

New pics . . .

2010-10-01T15:32:00.001-05:00

Here are some pictures of Matthew walking for the 1st time since surgery. We took the pictures yesterday.

He got to go for a wagon ride since he did a good job walking. He enjoyed it but he wasn't about to give a smile.

Here comes the Matthew parade. Craig did a good job pushing all the equipment.

Matthew started off not liking his nurse, Kris, but after 3 days she got to him and he loved her. She has a heart son too so she can relate to us and Matthew.

I'm hoping we can post some more pictures of him walking by tomorrow but we will see.

Some Answers . . .

2010-10-01T14:59:00.000-05:00

The doctors rounded and were surprised about Matthew's condition. We are happy to have a Nurse Practitioner and Intensevist working today who know Matthew very well. Not too happy with the one from last night but I won't complain.

They spent a lot of time talking with us about the game plan for now. They stopped the one medication and started something else that promotes healing of the stomach lining. There are a couple of ideas of what they think is going on. No real way of knowing unless it continues. He hasn't vomited again and he is starting to talk a little. Also, they started him on some TPN which is nutrition with calories through his IV so he doesn't have to eat. He is struggling with insomnia and has slept 3 hours out of the last 24. They just gave him something to help him sleep. Hopefully, a good day & night of resting and we will be back to recovery tomorrow.

I went home and slept for a few hours but came back early when I heard he was vomiting blood. One of the nurses we know very well came walking in with me today and the poor thing got an ear full of my stress this morning. Thank God they are so understanding of our ups and downs emotionally. We are still very worried about Matthew and our hearts are heavy but we feel better about the game plan. We have lived it and been told it so many times, ''2 steps forward and 1 step back, " but it's still hard to handle.

Thank you for all your words of encouragement and your prayers. It's so nice to know we can vent on Facebook or on the blog and you all listen and pray for us. We are feeling better this afternoon. Oh and by the way no fluid on his lungs. The one thing we had mentally prepared ourselves for he hasn't had. Go figure!!

Long Night....

2010-10-01T06:41:00.001-05:00

Matthew's severe nausea has continued and peaked with him vomiting blood in the middle of the night. It was incredibly scary and sad. We now believe his issues over the past 24 hours have been the result of a negative reaction to one of his pain meds. The manufacturer of this pain med specifically says do not use with aspirin, Enalapril or diuretics because of side effects including the likeliness of stomach bleeding and ulcerations. Matthew is on all of these. I guess the disappointing thing is that all of the indications were there, but we kept giving him the pain med anyway. It was his nurse that finally (thankfully) made the connection and pulled the med last night. We will have lots of questions for the Doctors when they make their rounds this morning.

Complaining . . .

2010-09-30T21:57:00.003-05:00

Matthew had a set back tonight. He has become very dehydrated which has caused him to throw up and dry heave for the last 3 hours. He is so miserable!!! This has happened due to them trying to keep fluid off his lungs. Managing this requires such a delicate balance. They are now bringing back medication and machines that he was weaned from earlier today. We are praying that the extra fluid they are giving him and reducing his diuretics will help him start feeling better soon. We are so exhausted and I think I'm just starting to feel down. His heart is staying so strong and we know first hand that setbacks are part of it all, but it still flat out stinks to see your little boy so miserable. Please pray this is resolved by morning and that he doesn't end up with fluid around his lungs or belly. The staff is trying so hard to manage this delicate balance. They said they think they may have pushed him too much 48 hours after surgery.

On a brighter note, he did go for his walk and did well. He then went for a wagon ride and enjoyed it. All of this was before he got sick. I will post pictures of it later. His nurse Kris has gone above and beyond the last 3 days. She even stayed late tonight to help out with him.

Thanks for letting me share. God is good and we know he will get Matthew over this hump but Craig and I can't pull ourselves away from Matthew's bedside until He does!

Slow and Steady and Tired...

2010-09-30T15:25:00.001-05:00

Mathew is still doing really well. He had a pretty restless night and is still very sore. Amy also slept very little last night. Around 3 AM this morning she awoke to find a pool of blood in Matthew's bed. She immediately ran out of the room to find his nurse and after a flurry of activity they discovered that Matthew managed to disconnect one of the IVs in his foot resulting in a slow and steady leak. It took about an hour and a half to get Matthew cleaned up and reconnected. In the end, it looked a lot worse than it was and he didn't really lose much blood.

One of the things that has surprised us is that he seems to be hurting more than we had prepared ourselves for. Of course, with his first 2 surgeries he couldn't tell us what he was feeling. We knew he was hurting but we didn't know how bad. Now we know, it was a lot. We hear some version of owie more than anything except where's mommy. His favorites are "I want to go home now, I want my Mommy, I don't like my owies and I don't like my hospital."

His Doctors are continuing to adjust his medication to find the magic formula to help him feel better. He is now off of all narcotics. The are weaning his other pain medications and will soon have him on a regular tylenol / ibuprofen rotation. That have increased the amount of diuretics he's getting in order to keep the fluid out of his chest. He is now filling the 2 drainage tubes in his chest and his diapers more quickly. In fact, his diaper just filled up so fast he leaked out and peed all over Amy, who is now sporting a pretty pair of greenish scrub pants.

The goals for today are to increase his fluid output, reduce meds, get him eating and somehow convince him that it's a good idea to go for a short walk. I'm not sure how that will work with him still attached to what seems like 50 cords and wires and an IV stand that's lit up like a Christmas tree. He still has one IV in his right foot and a line in his femoral artery. Time for that walk....we'll let you know how it goes.

Better Day . . .

2010-09-29T18:01:00.002-05:00

Matthew has had a much better day today. His pain seems to be manageable and so far his lungs look great. He is starting to cough and his voice is coming back. They moved us to a bigger room and a big bed so I can sleep with him. This really calmed him down this afternoon. I think tonight will go much smoother. He has started to drink a little and he has ate 3 Popsicles. They will take another chest x-ray in the morning to see how the fluid is. They told us to expect some build up tomorrow and that is normal. They have weaned him off of some of his narcotics and they were able to pull one line out. We are making steady progress. His urine output has been a balancing act. They give him a diuretic to urinate and then he gets dry and they have to push more volume (fluid). All in all it's been a good day. He is making some amazing progress!!

Pain . . .

2010-09-28T22:50:00.000-05:00

Matthew is experiencing a lot of pain. He wakes up saying, "Owie, Owie" and "I wanna go home". He has a lot of mucous in his throat and we try to get him to cough. He tries so hard but it really hurts. If you could see the face he makes it would break your heart. Our nurse this evening has been amazing. She is right there as soon as he moves checking to see if he needs medication and what she can do to make him comfortable. We are so blessed with some amazing nurses and doctors.

By the way, the new Children's Hospital is wonderful. I get to sleep in his room tonight with a sleeper sofa and I have my own bathroom :)!!!! Craig is staying in one of the guest rooms they have for parents. This will allow us to take turns comforting Matthew tonight.

Thanks for all your prayers. We have no doubt that Matthew pulled through because of them. God wrapped his arms around us today and pulled us through just like he promises. Continue to pray and we will update in the morning. Sorry no picture yet. I didn't want to wake him with the flash and it's dark in here. Good night.

Settled In . . .

2010-09-28T18:18:00.000-05:00

We are getting comfortable in what will be our new home for the next several days. Matthew's surgery was a success and his heart is strong. He was off the ventilator by the time we saw him. His surgeon said that things went well with no complications outside of a fair amount of scar tissue from his last surgery. Now for the recovery . . . . Matthew woke up ready to fight again!!! They are trying to keep him down with some good drugs. He wakes up and pulls on everything and it scares us. You can tell he hurts but he is so frustrated with everything that he continues to fight it.

We will try to post a picture later. He looks pretty good outside all the equipment, machines and lines!! Our little boy is finally pink and wow it is so nice to see oxygen levels in the 90's.

Our prayer requests for the next 24 hours are:
1. Matthew stays calm and doesn't hurt himself!!! Right now this is our biggest concern.
2. His kidney function
3. Proper drainage of fluid around his lungs.

Thanks for staying with us on our journey and for your prayers!!

Good News . .

2010-09-28T13:40:00.000-05:00

Matthew has come off of bypass with no problems. He should be transported to his room around 2:30. The surgeon will meet with us to go over the details at that time. Please keep him in your prayers as they transport him to his room and that he comes out of anesthesia calmly.

Bypass . . .

2010-09-28T11:38:00.000-05:00

Matthew went on bypass about 15 minutes ago. We will receive another update in 2 hours. It's been a long day of waiting!!!! Please keep praying. This is the detailed part of Dr. Fortuna's job. Also, pray that he comes off bypass with no problems.

Update #1

2010-09-28T09:51:00.002-05:00

They just made the first incision. Our next update will be when he goes on bypass. We will let you know as soon as we here.

Waiting . . .

2010-09-28T09:40:00.000-05:00

Matthew was really upset this morning and told everybody he wants to go home. They realized he wasn't handling things well so they gave him some medication to relax him and wow did that work. He was full of smiles after that. Here are some pictures to show his happy medicated mood.

I thought I was strong until we hit the hospital and wow this place brings back so many memories. It was hard to hand my little boy over and knowing what was about to happen. It was emotional but wow the peace of God which passeth all understanding has calmed all of our fears and now for the long wait.

Please pray for our surgeons' hands and all of the nurses. We told Matthew to stay strong and fight and he said okay. Thanks for all your prayers and support. Please leave us a message. We love hearing from all of you. It makes the day go quicker.

We haven't heard any updates yet so that means they are still prepping and getting all the lines in. It will take around 1 1/2 hours to cut through all the scar tissue and open the sternum. We will update as we hear.

Here We Go...

2010-09-28T08:53:00.000-05:00

We just got on the roller coaster. Matthew was taken back for surgery at 8:03 this morning. It will take about 90 minutes to put him to sleep and put the various lines in and then they'll start the surgery. They're estimating the surgery to take about 8 hours today. Will update again soon.

Thank you for your prayers today.

Surgery Is Off . . . Again . . .

2010-09-20T13:52:00.001-05:00

We took Matthew to see the surgeon, Dr. Fortuna, today. He was not comfortable with Matthew's cough and raspy voice. When they place a person on bypass it takes their immune system down. He would have no way of fighting this viral infection. There would be a great chance that he would remain on the ventilator and it would cause a series of complications. Dr. Fortuna said that he was not comfortable taking him into surgery like this. We prayed for God to give our surgeon wisdom and we believe that is what He did. We have peace that this is the right thing. As soon as the surgeon said he is not comfortable taking him to surgery, say no more, that is enough reason for us!!

We have been rescheduled for next Tuesday. I asked if they sell a bubble we can put him in. This has been such a crazy summer trying to get this surgery done. It needs to be in God's timing so we are going to sit back and quit stressing about it. There is a reason for all of this and we have no doubt that this is in God's hands. Hey this gives us another week to pray!! Thanks for all of your prayers, please keep them coming.

We will let you know if things change.

Heavy Hearts . . .

2010-09-19T21:47:00.000-05:00

I have mixed feelings as I'm writing this post. We are feeling a little overwhelmed and if we are honest with ourselves, we are experiencing some anxiety. As of right now, Matthew's surgery is scheduled for Tuesday morning at 8:00am. Taylor came home from school this past week with a fever and sore throat. I took her to the doctor on Wednesday and they gave her an antibiotic but they thought it was viral. They decided to treat her because of Matthew's surgery. Later that evening Matthew spiked a low grade fever. The next day, we saw the Nurse Practitioner at his surgeon's office and she diagnosed Matthew with a double ear infection. She said he should be okay to go ahead with surgery but Dr. Fortuna will need to see him on Monday to make the final decision. Matthew was doing much better yesterday so were relieved that all was fine. This afternoon Matthew has started with a barky cough and has a raspy voice. We have no idea what is going on. We see the surgeon in the morning and we are very nervous that surgery may be rescheduled.

Please pray for our surgeon to make the right decision and for our peace. We are so ready to get this over with and the idea of rescheduling is making us sick to our stomachs. We want Matthew to go into surgery in the best condition possible so please pray for his healing. Our other prayer request is for our peace. The reality of going through all of this again is starting to hit hard. We are scared and anxious. We know that God is in control and he will carry us through this again but we are human and we would be lying if we didn't say we are so scared!!

Our appointment is at 10:50 in the morning and we will post shortly after that what the surgeon has decided. Thank you for your prayers they mean so much!!

Disney Pictures . . .

2010-08-03T10:34:00.002-05:00

We went back to Disney World this year with Craig's brothers and their families. Craig's oldest brother is in the Airforce and has been gone a lot so it was wonderful to spend some quality family time together.

We had an amazing time and both kids loved it. Taylor had an autograph book and was able to get all the Princess' signatures except Jasmine. Matthew loved the characters as long as they didn't touch him or talk to him. Here are a few pictures of the trip.

Matthew with his favorite characters, The Toy Story Gang! We saw them twice.

Matthew riding his favorite ride, "Toy Story Mania" When it ended he said, "Let's do it again". He loved it!!

Matthew would not take his eyes off of Pluto.

I will post more pictures later. It was an amazing time where we made many memories that we will cherish forever.

Surgery Rescheduled Again . . .

2010-07-19T12:04:00.003-05:00

Here we go again. Last weekend, we received a call that Craig's Grandpa was not doing well. We went to see him and left the kids with my Mom to keep them away from germs so that Matthew stays healthy. We received a phone call from Mom that both kids were throwing up and running high fevers. Matthew actually spiked a fever of 105.8. Scared us to death. We hurried up and put him in the tub with a fan and was able to get it down to 102. We were ready to call 911 because his breathing was really bad. It was a long weekend of keeping a close eye on both kids. Craig's Grandpa passed away the next day and we are so thankful that we were able to see him one more time.

I called Matthew's surgeon and they said we should bump the surgery to make sure he is over the virus. They tried to reschedule in August but it was for the week before Taylor starts school. We could not do that to her and I don't think I could handle it either. We are now scheduled for September 21st. Crazy - I know!! After discussing this with Craig we have peace that this is the right time. It seems like Matthew has been so sick this summer and that God is trying to tell us that it isn't time. We will be in the new Children's Hospital and that will be a huge blessing. We will have a sleeper sofa and bathroom in his room. That will be so nice and make things a lot easier on Craig and I. We also found out that Taylor will be allowed to see him in the new hospital. That will help her too! She is very protective of Matthew and not seeing him for 2 weeks or longer would be rough.

We appreciate all the prayers and emails. They have helped keep our spirits up. Please keep us in your prayers. At least the later surgery date gives us more time to pray!! We will keep you updated as we go.

Surgery Cancelled . . .

2010-06-25T14:39:00.003-05:00

Matthew came down with a cold this week. It didn't seem too bad to us. A low grade fever, runny nose and a cough. Yesterday the fever started to go up so I called his pediatrician for an appointment. Matthew had an ear infection before we left for Disney World so I assumed it had returned.

His pediatrician checked his oxygen saturation and to our surprise it was in the low 70's. She then checked him over and said that his liver was enlarged. They did a chest x-ray and everything looked fine. The pediatrician then called Matthew's cardiologist and they decided to send me home with a pulse oximeter to check this oxygen levels at home with plans for me to call them with an update in the morning. Long story short, the medical supply store did not deliver the pulse oximeter. After multiple phone calls last night we found out that our insurance company approved it but the medical supply store would not accept the insurance's discounted rate. If we were to do a mail through the same company we could get it for $65 but if we were to buy it directly from the supply store it was $685.00. The insurance company said they would not pay that much so the medical supply store cancelled the doctor's order. No wonder we are having healthcare issues! I would be glad to go to Washington and explain what is wrong but that's my soapbox so I won't burden you guys with all of it. I could say so much more about our health insurance industry!

We went back to his pediatrician this morning and his oxygen saturation was in the low to mid 60's. Not a good thing. She also felt like he was bordering on dehydration and wanted to admit him but decided to send us to cardiology to let them make that decision.

We saw Dr. Hasselman and he felt Matthew was stable and the virus was not affecting his heart so we should take him home and keep a close eye on him. They offered to admit him if we were worried (we're always worried about Matthew) but he felt comfortable letting us go home if we felt comfortable taking him home. The PICU gave us a pulse oximeter to use so this made us even more comfortable. We are home resting but if there are any more drops in his levels or he quits drinking then the plan is to send us to the PICU for admission. Wow what a scare! These things seem to pop up out of nowhere. I was guessing an ear infection and a little antibiotic and we would be on our way but as always Matthew keeps us on our toes. Dr. Hasselman said we need to cancel his surgery which was schedule for July 7 and push it bank 2 weeks. They don't want to take any chances with his infection and they definitely don't want him going to surgery with oxygen levels in the 60's. We are rescheduled for July 21st so please pray that he heals by then and that all his levels are back to normal.

We will keep you updated as we go.

Concerns...

2010-06-24T14:20:00.003-05:00

Matthew came down with a fever this morning so Amy just took him to see his pediatrician. For some reason his liver is enlarged so now they are taking chest x-rays and calling his cardiologist. He pediatrician said that is could just be a viral infection but an enlarged liver in a little boy with a hypoplastic heart is definitely something to be concerned about. Ugh!

Surgery is Scheduled . . .

2010-05-28T22:28:00.004-05:00

We met with Matthew's heart surgeon today and July 7th is the official day. We have to be at the hospital at 6:00 am. He told us Matthew is ready and every thing looks great to move forward. We were reminded today of what a wonderful surgeon we have been blessed with not to mention all of Matthew's other doctors and the PICU staff at OSF.

The anxiety has kicked in with having a date picked but we are ready to get this done and behind us. We leave for Disney World on June 12th so it will be nice to have some quality family time together before out lives are turned upside down. Thanks for all your prayers and please keep praying!! Mark your calendars and feel free to leave any words of encouragement we love hearing them!!

Home Sweet Home . . .

2010-05-14T08:56:00.003-05:00

Sorry for the lack of updates. I could not get the update to post last night. Apparently, I was having some technical difficulties which were probably just Amy difficulties. I have been so exhausted this week.

We made it home on Wednesday and Matthew is doing great. He is complaining that his legs still hurt but he is playing just fine and is full of energy.

We received great news from his heart cath. His heart is strong, no leaky valves, no issues with his aortic coarctation and no collateral veins needed to be closed. The only problem was they couldn't get cooperation from the veins they normally would go through in his legs for the cath. They called in another cardiologist to assist but still couldn't get the veins to cooperate. Instead, they had to go straight into the artery in his leg which led around to the back side of his heart so they basically performed the heart cath backwards. They believe this was due to all the lines he had placed in the same veins during his first two surgeries. Once those veins have been used multiple times they become less cooperative. Thank God for a great cardiologist who was able to figure things out and move forward with the cath.

Matthew's recovery was the scary part. As soon as we walked into the surgical recovery waiting room one of the ladies behind the desk asked if we were Matthew Orwig's parents, I immediately said yes and she said thank God, one of you need to come with me. She then took off jogging out the door. I hollered a quick I love you to Craig and then followed her out the door. Poor Craig was left behind in the waiting room wondering what was going on. Matthew woke up from anasthesia around 3:00 pm very angry and it took 6 nurses and myself to hold him down. He was to lay flat on his back until 9:00 pm but we could quickly tell that was going to be impossible. This was scary because he had recently open veins and arteries in his legs and neck and everyone was worried that he would start bleeding heavily. We had wonderful recovery room nurses but they were amazed at Matthew's strength. They pushed enough narcotics into him to put a grown man to sleep but it would calm Matthew down for no more than 60 seconds and then he was up fighting and pulling on all the tubes and wires. After an hour and a half of fighting I was in tears so they called a male nurse to help (more muscles) and they finally called Craig in to join us. When Dad got there they put Matthew on his lap and he took one look at Dad and immediately fell asleep. Dad still thinks he was the hero but I didn't want to burst his bubble that I think the narcotics finally caught up with him (or maybe it's that I'm struggling with the fact that I couldn't calm him down. He is a Momma's boy afterall). Rather than transferring Matthew into a bed to take him to his room, they pushed Dad through the hospital in the chair to avoid waking Matthew up again.

He slept very little through the night but was in good spirits. We made it home and he crashed Wednesday night and most of yesterday. He's back up and running again this morning.

All in all it was great to hear that his heart is strong going into this next surgery but it makes us nervous as to how they will keep him down for the open heart. We have a lot of questions for the surgeon. The cardiac team will be meeting next Monday to discuss the cath with the surgeons and recommend the date for surgery.

We are truly grateful for all of the calls and more importantly for the prayers. As far as Mom and Dad are concerned we are hanging in there. I thought I was strong going into this but I now realize that I'm scared to death for this next chapter in our life. I had been able to push all of this to the back of my mind for the past year and a half but now that the time is here for his next surgery I have so many emotions that are overwhelming me right now. I hope that I don't sound negative because I do know that I'm blessed and that God has carried us this far and will continue to carry us. I just wanted to share some of my feelings so that all of you can pray for my strength too. As a Mom, I just want to fix everything so it is hard to sit back and let go. Matthew screams my name nonstop when he is hurting and that gets to me.

Thanks again for your prayers. I will let you know when we hear from cardiology next week.

Admitted...

2010-05-11T21:15:00.003-05:00

Matthew was admitted to the Post Intermediate Care. They had some problems getting into one of his arteries so they had to go an alternate way. I will explain more later when I'm not so tired. His heart function looked great so that was good news. Recovery has been a different story. Let's just say Matthew woke up with vengeance and it took several hours and multiple narcotics to calm him down.

He is finally able to sit up so he just ate and we are going to try and get some sleep together. Hopefully, he stays calm for our little neighbour (we are sharing a room) to get some sleep too. Thanks for your prayers and we will post more details tomorrow. Good night and thanks again for the prayers!

Heart Cath - Update #2

2010-05-11T14:48:00.002-05:00

Just heard they are done with the heart cath. We are waiting to talk to the Doctor now. It definitely went a lot faster than we were expecting....and we hope that's a good thing.

Heart Cath - Update #1

2010-05-11T13:10:00.004-05:00

They took an unhappy Matthew back for his heart cath right at 12:00. Our first update was at 1:00 - the cardiologist came out to tell us they are having a hard time getting the line in his leg and they had to call in another cardiologist to help. Ugh! Thankfully, while they were telling us this they came out with another update indicating the backup cardiologist was able to get it in. More to follow...

Preparation for Surgery #3

2010-04-30T07:49:00.003-05:00

I haven't posted in awhile as you can tell. Life has been normal with us and nothing big to report. We saw Matthew's cardiologist yesterday and received a glowing report. His heart function is great and no issues. He has a cold and his oxygen saturations levels remained 80% which was wonderful to see. They have scheduled his heart cath for Tuesday, May 11th. This will give them a plan (map) for surgery. They will take pictures and some blood samples to evaluate and check for leaky valves. One concern is Matthew's coarctation, if they find that it is narrowing than they will open it up with a balloon dialation during the cath. The other thing they look for is called collaterals which are veins that the heart or lungs grow to try and compensate for the low oxygen saturations. If the collaterals are bigger they will put coils in them during the cath. All the intricate details of the heart has me amazed that people think this happens by chance and not by God.

We had 2 doctor appointments, an EKG, and an echo and Matthew did very well. He has very little patience for anything related to a doctor's office or hospital but yesterday he was very cooperative. Let's hope he is starting to get use to this. He did tell Dr. Hasselman, "NO Doctor". Luckily, Dr. Hasselman didn't take it personally.

If everything goes well for Matthew's heart cath then surgery will be late June or early July. We are going back to Disney World in June with Craig's brothers and their families. It will be so nice to have the family getaway before our whirlwind begins. I'm taking a leave of absence from work June 1st to October 1st. Out sitter is retiring and it will be way to hard to balance work with the hospital time and recovery. This will give me the ability to be totally focused on Matthew and Taylor.

Please keep Matthew in your prayers on May 11th and for the doctor's wisdom as they prepare him for surgery. I'm so ready to have this surgery done and behind us but I'm also sick to my stomach about it. We are trying not to worry and just enjoy today with him. We will keep you updated as we go through each procedure and I will update regularly as we are entering this new but all too familiar phase of our lives!

Have a wonderful spring and enjoy the sunshine!!

A few more Branson pictures . . .

2009-12-23T09:11:00.002-06:00

I've officially won the worst blogger of the year . . .

2009-12-23T08:26:00.005-06:00

I know, I know, I know - it has been a long time since I last blogged. So much has happened since Halloween. Here is a brief little blog on the last 2 months.

Matthew turned 2 and it is so hard to believe. He is officially a toddler and has lost the baby look. We went to Branson for a couple days with my parents and sister and her family. My niece Alyssa was born 10 days after Matthew so we had one big party at the condo we rented. Here are a few pictures of our trip

A stop at Lambert's on our way down. One of our favorite places to eat. If you've never been we highly recommend it.

Matthew and Alyssa enjoyed a Curious George cake. We had a hard time keeping little fingers out of the icing before it was time to eat!!

Matthew loves football so his favorite gift was a Nerf football that Grandma and Grandpa Orwig gave him. Oh, I almost forgot, Craig's Dad and Jan met us in Branson too! It was so much fun having everybody there.

We went shopping at the Landing and as you can tell it was a little warm for Christmas shopping. The Landing was beautiful and the kids loved the fountain. It was so hard to get a picture where all the kids were looking at the camera so here is the best one.

I loved watching all the nieces and nephews playing together. They get along so well with very little fighting. My nephew gave us a good laugh the day we went to The Landing. There were Christmas decorations everywhere and these silver reindeer's all decorated. When my nephew saw them he was so excited and pointed out that they have Christmas camels here. We all laughed so hard we were crying.

We made a lot of memories but our favorite day was Silver Dollar City. There is nothing like Silver Dollar City at Christmas. The lights are breathtaking. Matthew loved the Caroling train. He is really into Choo Choos so that is the number one thing on his Christmas list. Taylor is wanting a Barbie House and a desk for her room. I'm so excited for Christmas morning. The kids are at an age that it is going to be so much fun. I think I may be more excited than they are.

Well that is a brief overview. I have to start baking. I'm a little behind this year. We wish all of you a very Merry Christmas and a wonderful New Year.

Okay, I will do my best to post some pictures of Christmas a lot quicker. Merry Christmas!

Halloween Fun . . .

2009-10-31T22:33:00.007-05:00

Matthew wasn't able to go treak-or-treating but he couldn't let his sister get dressed up and not join in the fun. Daddy and Taylor went out and had a blast and brought home enough candy for the both of them. Matthew was feeling yucky all day and spent most of the day with his blankie and the Wiggles (his favorite show). He is doing much better but not back to normal. I was able to get a few pictures before Daddy and Taylor left.

Here is Matthew watching his sister leave. He was so upset that he wasn't going. He stood right here most of the night watching all the kids go up and down the street.

I'm amazed at how much better he is doing and we are praying that his strength will be back soon. Craig and I spent most of the day bleaching and wiping down every surface in this house. I have no idea if it will help the rest of us from catching it but I figure it is worth the try!

I hope all of you had a safe and wonderful Halloween.

Happy Halloween! We are Home . . .

2009-10-31T10:32:00.004-05:00

We made it home at 7:30 last night. We were so tired that we all slept until 9:30 including Matthew. So the official diagnosis is H1N1. So crazy since Matthew has only been out of the house only once in the last week. I changed my work schedule and pulled Matthew from daycare to try and protect him from all these nasty bugs that are going around. All of his blood work came back okay except for it showing that was dehydrated. The nasal swabs came back negative for Influenza A but Dr. Christison said that 30% of them come back negative when they are actually positive so she is diagnosing him for H1N1 based on his symptoms. He had the runny nose, red throat, very high fevers and vomiting. The good things is that he was treated with the Tamiflu within the first 26 hours so it has helped prevent him from getting worse.

Matthew's heart is very sensitive to fluid volume so dehydration comes on quickly and his body starts shutting down. His heart rate was 160 and his blood pressure was very high the entire hospital stay. The one good thing about all of this is that it caused us to catch the H1N1 early and start treatment early on so he ended up with no major respiratory issues.

It was amazing to see how much better he was after 12 hours of fluids and the Tamiflu. He still looks sick but so much better. We know all of your prayers were heard and helped his little body recover.

Yesterday was my birthday and let's say it started off bad but ended so much better with the hospital dismissal. It was hard being admitted again. I do okay until we hit the long walk down the hallway and the emotions of the many stays comes rushing back and the tears start flowing. We have officially been on every floor of the Children's Hospital so I think we should have a room named after us - just kidding. Just when I start to feel sorry for myself, God lifts me up and carries me.

It was so nice to sleep in our own bed last night and not hear the beeping of machines and kids crying all night. By the way, if we haven't said it enough, we love you nurses in the PICU. We so missed your care on the regular floor. Our nurse went into panic mode when she saw oxygen saturations of 80 and we were so excited to see 80. We begged Dr. Christison for an admission upstairs and she said she felt our pain and wished she could but we were thankful that Matthew was stable and didn't need the PICU. I think his Mom and Dad needed the PICU for their comfort. What can we say, we feel at home up there and your care is exceptional!

Thanks for all your prayers and all the birthday wishes. We are so excited to be home. I'll try and post some picture of Matthew in his Halloween Costume later. No trick-or-treating for him but I can't resist dressing him up. Have a great Halloween and stay safe!

By the way, a special thanks to Lindsey Chatterton for taking such good care of Taylor for us. She had so much fun that she has been telling Grandma every detail of her stay. Your help was above and beyond. We are so blessed for your friendship!

The Flu...

2009-10-29T23:28:00.003-05:00

Hi Everyone

Last night Matthew developed a fever that resulted in him getting admitted to the hospital today. The fever reached 104.7 degrees this afternoon. At this point, they are strongly suspecting that Matthew has contracted the H1N1 virus. Thankfully, blood tests have ruled out endocarditis (a bacterial infection of the heart lining) and a throat swab has ruled out strep throat. They placed Matthew in isolation tonight and medical staff coming in the room are required to wear protective gowns and face masks. They've also started giving him Tamiflu to help stop the spread of the flu virus in his body.

Please keep Matthew and Amy in your prayers. Two years of constant worry for Matthew is really taking a toll on her emotionally.

We'll update again Friday morning.

Preschool . . .

2009-08-27T14:50:00.003-05:00

What have we been up to . . . . trying to get caught up at work and home after Matthew being sick and now we are getting ready for preschool. Taylor had her preschool physical today and it was so nice to filll out a form and have everything marked "normal". I said to her doctor "No heart murmur, right?" and she laughed and said, "No heart murmur!" Our little girl is in the 90th percentile so I think we are going to have a tall one. Doesn't surprise me with the height in my family and Craig's family.

We are going to the Preschool Carnival this Saturday to meet her teachers. Taylor can't wait. She has picked out a backpack and lunch bag that she thinks she has to have. Although, there is no need for these items they are a must have in her mind.

I can't believe summer is coming to an end. Where did it go and what happened to the many days at the pool? We've had such weird weather this year. I hope this isn't a bad sign for winter!

Taylor got her hair cut short this past week and she looks so grown up. It is adorable! We are working on growing her bangs out but we're at the stage where it's tough keeping them out of her eyes.

That's about it for us. Hope your summer was a good one!

Home . . .

2009-08-15T18:48:00.003-05:00

We made it home again. What an exhausting few days it has been. I took Matthew back to the doctor Friday morning and he was looking worse. He was very limp and didn't even fight the doctor for an examination which he normally does. He quit eating on Thursday and wasn't drinking enough which led to dehydration. They decided to admit him since this had been going on for several days and he was getting worse rather than better. Dehydration causes problems with Matthew's heart and lowers his oxygen saturation. There is a better medical explanation but I'm so tired that I'm not finding the right words to explain it.

To the hospital we went. He was admitted to the Pediatric Intermediate Care floor. We sure did miss the Pediatric Intensive Care Unit. He did get a private room and everybody was nice but they aren't as familiar with his type of heart condition. We are so used to the 24 hour care that the PICU provided and nothing against these nurses but we are a little partial (ok we are very partial) to the PICU nurses. They started an IV and that is a memory I hope fades quickly. It took 4 nurses, Craig and myself to hold Matthew down. He demonstrated some sort of super power. One of the nurses said he was the strongest little boy she had ever seen. It was crazy. He was so worked up that his heart rate was over 200 beats per minute, his oxygen saturation dropped into the 60's and he threw up all over himself and me. Thankfully, the nurse brought me some scrubs to wear - but the smell stayed with me. After the whole IV episode Matthew screamed every time a nurse or doctor came into his room. He would take his hand and try to push them away. I think he ended up with a reputation on the floor and the nurses weren't very fond of him by the time we left. I wish they could have seen his real personality because it is much cuter.

The IV fluid began flowing and wow what a difference it made. His coloring was better, his fever broke and his oxygen saturation went back to normal (for him that is - between 78 and 82 %). By this morning he looked like a different boy. He started eating a little and drank and drank and drank. It was wonderful to see him up and asking to get down to play. Cardiology came in and said he looks great and that he could go home as long as his pediatrician was comfortable with his fluid intake and by 2:00 p.m. we were on our way home. Tonight he is playing and having fun with his sister.

Thanks for your prayers. They worked and it was nice to know we had all of your love and support. I'm getting ready to put the kids to bed and I think I'm heading that way myself. What an emotionally exhausting few days. Maybe we can all sleep in tomorrow!!

Admitted...

2009-08-14T18:32:00.002-05:00

A fever for four straight days and now dehydration and a slightly enlarged liver resulted in Matthew getting admitted at children's hospital today. I'll give more details tomorrow.

Cardiology Appt . . .

2009-07-14T15:36:00.005-05:00

We took Matthew to his cardiologist appointment last Monday and all went well. It has been 6 months since we've been there and to our surprise they moved across the hall to a much larger area. We walked in the door to be greeted by our favorite receptionist who couldn't wait to see Matthew. She called back to the nurses and they all came up front to see how much Matthew has grown. We are so lucky to have such an amazing cardiology group right here in Peoria. It is wonderful to see how much they love our little boy. We also ran into Gail who was our contact person from the beginning. She met with us while I was pregnant and gave us the tours of the NICU and PICU and answered our hundred questions. She has been with us and most of the families every step of the way. It was great to see her again. She couldn't get over how much Matthew and Taylor have grown. Gail has always taken an interest in our whole family and not just our heart baby. Gail is amazing and all of those who know her will agree.

Dr. Hasselman said Matthew looks great. His blood pressure, oxygen saturation, and pulses were perfect for him. It was great to hear how well they feel his heart is doing. Now for the news I was dreading.... Matthew will go in for his 3rd open heart surgery this next spring or early summer. We'll go back to see Dr. Hasselman in January and have an echo done. From there we will schedule a heart cath for the spring and then surgery will be planned. I was really hoping for the following summer but I knew that wasn't likely. Dr. Hasselman told us it is better to do it before he gets much older because the recovery will be quicker. He spent a lot of time explaining and made us feel comfortable that next spring will be the best time. We came into the appointment with a lot of questions. We've never asked a lot about the 3rd surgery because we wanted to get past the first two. We had read that the fatality rate for the 3rd surgery is 15% but Dr. Hasselman told us that he is proud to say that Peoria's rate is more like 1-2% which was encouraging to hear. He said that if Matthew has no leaky heart valves and his coarctation hasn't returned then he thinks Matthew will pull through with no problems and could be out of the hospital in a week or so. That was great news too.

Here was my big question: What is the realistic expectation for Matthew' life span and quality of life? I hate to admit it but I think about this every day and I've tried to educate myself as much as possible but every heart case seems to be so different. I try not to worry about the future and I know God has Matthew in his hands but the human side of me does worry. Dr. Hasselman told us that he thinks Matthew will finish school and go on to have a job and a pretty normal life. Matthew won't be a long distance runner or have the stamina to be the the best athlete but he will be able to play some sports and do all the things boys love to do. He said that he's not going to hold back but we need to realize this surgery won't be Matthew's last one. He will likely have problems as he gets older and there will be some issues that will need to be addressed as we go. Hopefully none of these issues happen for a decade/decades. As far as his life span, he wouldn't speculate but it was nice to hear that he sees Matthew getting a job and living a pretty normal life.

We have high hopes for Matthew and we are expecting to grow old and watch him grow old too! He will always be our miracle child who stole our hearts from Day 1. We are going to cherish everyday and love him as much as we possibly can. We can't wait to see what amazing things God is going to do with him.

All in all it was a great visit. Was I ready to hear it's time for the next surgery? No! I never will be ready for it but it's our reality and I know God will give me the strength to get through this one just like he did the first two.

I hope this isn't too negative because I really do feel blessed and believe it is an amazing privilege to be Matthew's mother!!!

Summer Days . . .

2009-06-25T08:45:00.006-05:00

What have we been up to . . . a little of everything. Summer is in full bloom in the Orwig household. Running all over and having fun along the way. Matthew is growing like a weed and has become a toddler (the baby look is gone). He is such a character and has really become a much easier kid. He loves being outside and when I bring him inside it sounds like I'm beating him by the way he screams. He has become very fond of his baseball and bat. He tries to throw it up and swings at it. It is way too cute and too coordinated at this age. Do we have a baseball player on our hands, I think so! I've decided he will play right field. Not as much action so Mommy won't worry about him as much. He loves watching the Cubs games with his Dad. He will sit there for minutes which is a long time for Matthew. We have had a black eye, a swollen nose and two very large scrapes on our chin. Let's just say Matthew is a monkey. The things he climbs amazes me. I took the kids to the park and he climbed the small rock wall that Taylor just figured out last summer. This heart boy has no problems keeping up. Here are a few pictures of the past month.

A little vacuuming for Mommy. This picture is for blackmail when he is a teenager. He loves shoes and especially his sister's pink flip flops. He is a big fan of flip flops but his flip flops have the strap on the back so they don't make the noise when you walk.Taylor's are a lot more fun.

Also, please say a little prayer for us. We go see cardiology on the 13th of July for his 6 month appt. I'm sure we will start discussing surgery #3. I'm not ready for that discussion but I'm going to have to face reality. I know it will happen possibly next year but I'm holding out for the following summer. We will see.

What has Taylor been up to . . . Cheer Camp, swimming, the library reading program and lots of playdates. She attended the Metamora Cheer Camp and loved it. It was a way to use up some of her energy and she took some great naps afterwards. It was so cute to see all of those little girls out there. Our babysitter's son is playing football for Metamora this fall so Taylor wants to go watch Sean and Cheer for him. I'm sure this fall we will become some Metamora football fans since we know somebody on the team. Taylor starts preschool this fall and I'm a little emotional about it. I can't believe she is getting this big. She is a girly girl and I'm loving every minute of it. We have become shopping partners. Not sure if Daddy likes it especially when he balances the checkbook but we sure do enjoy it!!!

We have had some fun get togethers we our friends from the PICU. We love seeing them. Matthew and Berkeley are way too funny together. It is amazing to watch them and see how well they are doing and they look wonderful. They are going to be such good buddies. Then there is Selah, what a doll. She has won Taylor's heart. It's making her want a baby sister. I'm not sure we are ready for that. We enjoy the time we spend with all of them. We carry a special bond and have so many of the same memories. Jill and I went scrapbooking last weekend and we stayed up until 1am. We got a lot done and had a great time visiting and eating (our way of staying awake).

As far as Craig and I are concerned, we are working and enjoying the kids. Craig has been traveling a lot with his job but it's good sign that he is so busy. Job security. Craig has to have shoulder surgery on July 22. His 3rd one on this shoulder due to an old football injury. He has to say goodbye to softball and is really struggling with that. I guess that means more golf. I'm afraid the kids are going to struggle with Daddy not being able to wrestle and pick them up for 8 weeks. I guess Mommy will have to learn how to wrestle. Surely, I can be as much fun!

We have a busy weekend. Pool today, Splash Down tomorrow, and Old Settler Days in Metamora this weekend. The kids are going to love it. Well that wraps up our start to summer. Thanks for still checking in on us. I promise I will get better with the postings. Craig just bought me a new camera yesterday and it is a nice one. I can't wait to start using it. I hate the one I bought before Disney. Half my pictures were blurry so he decided to spend a little more money and get me a better one. I think he was tired of hearing me complain. Have a great summer!

Children's Miracle Network Telethon . . .

2009-05-20T21:04:00.003-05:00

On Sunday May 31, 2009, our family has the honor of being VIP Phone Volunteers for the 2009 Children's Miracle Network/Children's Hospital of Illinois Telethon. Our family has directly benefited from the Children's Miracle Network Telethon.

If you able, please support our fundraising efforts by clicking on the link below. There you will find information on the 2009 Children's Miracle Network Telethon as well as be able to make your tax deductible donation on the secure website using your credit or debit card.Click here to donate (or copy and paste into your browser): www.childrenshospitalofil.org/top/foundation/telethon

From here you can click on "To make a one time pledge to the Telethon".As you enter your information you will be able to designate your gift in honor of someone special. Please donate your gift in honor of Matthew Orwig to ensure we are notified that your gift has come in Matthew's honor.

The Telethon will be from 10 AM to 5 PM on Sunday, May 31 and will airon WEEK TV 25 (NBC affiliate). Amy, Craig and Matthew will be answering phones for the telethon during the "Heart Hour" from 3 to 4 PM. Our goal is to raise at least $500 (25 people donating $20-that's reasonable) priorto sitting down to answer the phones. All of the money raised through this telethon will go directly to Children's Hospital of Illinois.

Please don't hesitate to call or email us if you have any questions. Craig can be reached at 309.645.8928 or http://us.mc343.mail.yahoo.com/mc/compose?to=c_orwig@yahoo.com Amy can be reached at 309.303.8371 or amyg75@yahoo.com

Thank you so much for your help.
Sincerely,
Craig, Amy, Taylor and Matthew Orwig

P.S.You can call us while we are answering the phone live on television from 3 to 4 pm on May 31 by calling 309.495.9586. This will be our direct linethat day. We would love to hear from anyone during the broadcast, even if you donate prior to the day of the telethon.

Epcot . . .

2009-05-16T22:11:00.007-05:00

Pictures of our day at Epcot

We just finished riding the Nemo ride and Matthew liked it more than his sister.

Waiting to ride Soarin. Our favorite ride. It's like you are flying over the mountains, rivers, the Golden Gate Bridge, the Grand Canyon and many other places. It was amazing. I'm afraid of heights so it was a little scary but it didn't bother Taylor one bit. We rode it twice and my parents even rode it. My Dad couldn't wait to ride it again but mom passed on the second time around. Grandma and Matthew waited patiently and Matthew spent his time making friends with a cute little girl. He is such a flirt!

France was one of our favorite spots in the World Showcase. We stopped and had lunch at this little Bistro with to die for pastries.

Riding Test Track. Taylor was a little nervous in the beginning but in the end she loved it. The faster the better for her. She is such a dare devil. It was great that she met most of the height requirements.

Grandpa and Taylor waiting for the show Turtle Talk. It was very cute but it really bored Matthew. The only show that he had a hard time sitting through.

She is too cute!!!

One of the kids favorite things to do. Playing in the water. You should see my bathroom when they are done with bath time. There is more water outside of the tub than there is in the tub.

That pretty much sums up our day at Epcot. We went back in the evening and watched the fireworks, which were amazing. Definitely worth staying out late to see. Matthew was fast asleep before we made it back to the bus. I enjoyed the cuddle time but wow he gets heavy to carry. I'll post more pictures of the other parks too. As you can tell, we had a wonderful time.

Disney Magical Fun . . .

2009-05-10T21:10:00.012-05:00

We are back from vacation and sad to see it end. We truly had a very magical time. We left 90 degree temperatures and landed in Bloomington with 50 degrees. We are freezing.

Early morning at the airport.

There was nothing like seeing Disney for the 1st time but also to see it through the eyes of your children. The way Taylor's face lit up when she saw Cinderella's castle brought tears to my eyes. We had dinner with Cinderella and Prince Charming on Tuesday. She was so excited that she hardly ate. She loved meeting the wicked step sisters and step mother but nothing was like seeing Cinderella and giving her a hug. Prince Charming made our little girl blush and bury her head in Daddy's lap so Mommy took the opportunity to have her picture taken with the Prince. Later Taylor told us that she was afraid he was going to kiss her. Too cute and yeah she is running from the boy's kisses!!

Matthew had a ball too. I was amazed at how much he loved the rides and shows. He would clap and squeal with delight. He was an amazing little trooper and quite the entertainer while we waited in lines. One night we went to the 3D Muppet Show and he loved the preshow. He was running around with sheer excitement and talking to everybody in line. Watching him brought tears to my eyes in a whole different way. I never knew if we would see him running around and keeping up with everybody else. What a miracle he is. Just watching him as his face would light up and that beautiful grin with those big blue eyes, absolutely priceless. We made many memories and had some real quality family time. You should see how blonde my baby boy's hair is now.

Daddy and Matthew enjoying the Dumbo ride.

My Mom and Dad came with us and they enjoyed it as much as the rest of us. The kids loved having Grandma and Papa next door. Matthew is a big Papa's boy so he would wake up and immediately start knocking on their door and yell, "Papa, Papa"!

The day we left Taylor cried and cried because she didn't want to leave. She has asked multiple times if we can go back and last night she asked if we could move there. She has been playing and pretending that she is flying back to Disney World. We will have to go back again and I'm sure sooner rather than later. For all of you Disney fans, we are hooked.

I will post more pictures later. Some from each park. I only took a few (450 of them). I can't wait to start my scrapbook. This past week we really were in the Happiest Place on Earth. I have the best family in the world. Craig, Taylor, Matthew, Mom and Dad thank you for the memories and for making this trip so special.

Easter . . .

2009-04-16T08:48:00.006-05:00

We had a wonderful Easter. We went to visit all of Craig's family in Lincoln, IL on Saturday and the kids had so much fun. It was so cute to see all of the cousins running, playing and finding Easter Eggs. Here are a few pictures of the Easter Egg Hunt.

Taylor and her cousin Keith

Matthew thought it was more fun to point at the eggs and have Grandpa pick them up. He really knows how to work it. I'm dreading those teen years!!

The first thing Matthew wants to do when he gets up in the morning is eat breakfast. He had no interest in hunting Easter eggs all he wanted was to, in Matthew's words, "Eat".

Finally, he got to eat!!

A picture before we left for church. You can tell that they were thrilled with getting their pictures taken. Taylor is in the fake smile stage and Matthew has better things to do than get his picture taken. This was the best picture after taking around 20. I think we will avoid family photos for a few more months!!

We are leaving for Disney in a couple of weeks and we are so excited. It has been a long time since we had a real vacation so it can't come quick enough. I'm already starting to organize suitcases. Crazy - I know but I'm a little on the overly compulsive side when it comes to packing. I have a tendency to overpack so Craig is already lecturing me about the weight of the suitcase. I'm hoping I don't go over the weight limit for the airport (I'll be in trouble if we have to pay extra due to my suitcases being overpacked). I'll let you all know how that goes.

Hey - I think spring is almost here. We are heading out to the park and we have playdates tomorrow. Yeah sunshine!!

Surgery . . .

2009-04-10T15:11:00.007-05:00

Sorry - I didn't post sooner than now regarding Matthew's circumcision. We went in a week ago last Friday for what we were expecting to be a 3-4 hour stay and ended up being there for 12 hours. Matthew came through surgery with flying colors but recovery was a different story. He woke up from the anesthesia quicker than anticipated and Mommy hadn't been called yet. He was screaming hysterically when I arrived. He calmed down as soon as I grabbed him but anybody who knows Matthew knows he has a temper and can cry very loud. The screaming caused him to rupture a blood vessel where he just had surgery and he ended up with a hematoma the size of a golf ball. They decided to leave it alone and let him go on the Phase 2 Recovery.

He had something to eat and drink and seemed to be doing well considering everything when all of the sudden the bleeding became worse and they called the surgeon back. He took one look and said we are going to have to go in for an emergency surgery to stop the bleeding. He believed the bleeding issue was due to the baby aspirin he takes every day. We had stopped it on Sunday but they said it stays in his blood stream for longer than that.

I told them I needed to be there this time when he wakes up. The anesthesiologist was awesome and calmed my fears. I was one of those parents with a hundred questions. Since he had ate, they pumped his stomach out and intubated this time to reduce the risk of aspirating. They said they would call me as he was being wheeled from the operating room if I could handle the tube coming out of his mouth. I told them I've been there before and it won't bother me. They called me immediately but Matthew started to wake before I had arrived so the anesthesiologist pushed a little Fentanyl (one of Matthew's favorites in the PICU) and off to sleep he went. I was there when he woke up and wow what a difference that was. He never even cried. He was doing so much better but they kept him longer just to be extra cautious.

We came home and he has been a real trooper. Up and playing like nothing happened until you change his diaper but that has passed and we are back to normal Matthew. Thank God his heart held strong for 2 surgeries. Thank you for all of your prayers and we are back to full speed.

I hope you had a wonderful Easter. I have some great pictures and will post them soon.

Promised Pictures . . .

2009-03-24T22:56:00.004-05:00

I can't believe my little girl is 4. Time sure does fly. I signed her up for preschool this fall. I'm teary eyed just thinking about it. I would love for my baby girl to stay this age but she told me she wants to get bigger. She informed me she will still sit on my lap so I can rock her in the rocking chair. How precious - she will always be my baby girl!!

Taylor with her new Barbie bike that Grandma and Grandpa bought her. It has a small bike attached to the handlebars so Barbie can take a ride too! They never had things like that when I was a little girl. I would have loved it.We had her birthday party on Sunday but we still wanted to celebrate her actual birthday so we had chocolate cupcakes. Also, Daddy bought Taylor her first dozen pink roses. She has daddy wrapped around that little finger of hers.

She really enjoyed her birthday and we are having so much fun playing with her new Barbies. Our favorite part is dressing them up in lots of pretty dresses (thanks to Jenny for supplying Taylor with an entire Barbie wardrobe). It is so much fun to have a girly girl. (I enjoy my rowdy little boy too).

I'm a little behind . . .

2009-03-24T12:27:00.004-05:00

I know I said that I would post more pictures of the birthday girl but I got a new camera and I haven't read enough on how to edit my pictures. I will try to get them posted tonight.

I wanted to ask for prayers for my sister's little girl, Alyssa. Many of you will remember all the issues she had around the same time Matthew was in the hospital. Unfortunately, we have managed to stay hospital free but she has not. They have ran several tests and she still aspirates when she drinks which causes her lungs to fill up with mucous. She has had the flu (a guess of what it is) several times. She ends up being dehydrated and admitted for fluids. I received a call this morning and here she goes again. They are at the hospital right now and she is dehydrated again. They can't figure out what is going on with her. My sister is completely exhausted and full of worry with no answers. Please pray for the doctor's guidance and Kim's sanity.

On a second note, Matthew is scheduled for surgery next Friday, April 3rd. This is probably more info than you want to hear but he is being circumcised. Due to heart surgeries at birth, he wasn't allowed to be circumcised (risk of infection). The time has come to get it done and I have to admit I'm a little on the worried side. I know you take a chance every time a child has anesthesia but Matthew's heart makes a routine procedure a little more complicated. They don't expect any problems whatsoever but you never know. His blood pressure was a little high when went to see the urologist but Matthew gets frustrated very easily so we are contributing it to his temper ( I have no idea where he gets his temper - I think it's from his Dad :) but don't tell Craig I said so)! Pray all goes well, that he keeps his blood pressure down and doesn't get too worked up from not eating the morning of surgery. Should be interesting.

As always thank you for your prayers. I will try to get more pictures up tonight.

Fun & Crazy Weekend . . .

2009-03-16T21:32:00.009-05:00

Here is how our weekend started. Matthew had a couple little friends over for a playdate. I've posted some great pictures of Matthew and his little girlfriends. They are so cute and growing up way too fast!!

Selah, Berkeley and Matthew

"How you doin?" says Matthew (he is already trying to work his charm)

I have to admit their Mommy's enjoyed the playdate as much as the little ones did. We all met in the PICU at the Children's Hospital and we have enjoyed staying in touch. It is so nice to get together and visit outside of the hospital.

Our weekend ended with Taylor's 4th Birthday Party on Sunday. Here is a picture of Taylor with her girlfriends. I will add more pictures of the birthday girl on Wednesday, her official birthday.

Enjoy the next few days of warm weather. I love spring!!!!!

Walt Disney World - Here We Come . . .

2009-02-20T13:37:00.003-06:00

We just booked our first ever, Walt Disney World vacation. We are so excited! I'm not sure who is more excited Taylor or Craig. Taylor is a huge Cinderella fan so she has already decided that the first thing we are going to do is visit Cinderella's castle. My parents are going with us to help out and it will be their first time too! I don't know if May can come fast enough.

So all of you Disney experts, we would love for you to share any tips or great restaurants ideas with us. We are trying to plan out our days ahead of time so we can keep Matthew on a normal schedule. A happy Matthew makes for a happy Mommy.

Matthew will most likely have Surgery #3 next summer so we know vacation time next year will be at OSF. With that being said, we are wanting to make this year's vacation extra special.

Don't be shy, post lots of advice and tips - we want to be full of information for the big trip.

Have a great weekend and stay warm with all of the fun snow heading our way.

Pictures of my sweethearts . . .

2009-02-16T20:23:00.004-06:00

Here our a couple pictures of my little sweethearts on Valentine's Day.

Also, I found Matthew trying to help Mommy with the dishes. What a sweet boy to help me on Valentine's Day! I hope all of you had a wonderful Valentine's Day too.

"Congenital Heart Defect Awareness Day”

2009-02-12T14:25:00.003-06:00

Today is Congenital Heart Defect Awareness Day. Our family would have never known this or even payed attention to this until our heart baby came along. I read this today and decided to post it as our little way of bringing awareness to congenital heart defects:

"When thinking of heart disease the misconception that seems to persist is that heart disease is an “older person’s disease,” but, what most people do not realize is the impact of congenital heart defects on families. We hear and see so much about adult heart disease, and are rightly concerned with effective treatment, but how many people are aware of Congenital Heart Defects? Did you know that CHD is the number one birth defect and the number one cause of death from birth defects? Did you know that one out of a hundred (1/100) babies are born each year with CHD?There are 1,000,000 or more Americans alive today that were born with congenital heart defects. How serious are the heart defect problems among babies? Besides being the number one cause of death from birth defects during the first year of life, nearly twice as many children die from congenital heart defects in the United States each year as die from all forms of childhood cancers combined. Things are improving. In the 1960s and 1970s as many as 30 percent of babies died following congenital heart surgery and today nearly 95 percent of babies survive congenital heart surgery."

We have one of those 1/100 babies who is a miracle. Valentine's Day and heart awareness month takes on a whole new meaning for our family. We are so thankful to have Matthew with us during this Valentine's Day. We send our love to all of you and especially to those who have children with heart defects, we give an extra special hug to you today.

Matthew had his cardiologist appointment yesterday and received great news. His blood pressure was back to normal and it was decided that the previous high blood pressure readings were due to the steroids and his cold. His oxygen saturations were up to 78 and Dr. Hasselman said he was very comfortable with that number. Matthew was around 85 for the first few months following his second surgery, but it appears that he is leveling off in the high 70's now. Dr. Hasselman wanted to know how Matthew's energy level is and I said I think he is above average. He has more energy than his Mom that's for sure. No concerns with his oxygen saturation and we don't have to go back to the cardiologist until July!! Yeah!!

Matthew just woke up from his nap. Have a great Valentines Day. The Orwig family sends their love.

More doctor appts . . .

2009-01-29T09:03:00.005-06:00

Matthew has had a cold pretty much non-stop since November. Last week his cough became worse and he spiked a fever on Wednesday night of 101.5. I called to get him an appt with his pediatrician, but she wasn't in so we saw another doctor. Matthew was very fussy and this doctor didn't handle it very well. I'm not sure why you would choose pediatrics as your speciality if you can't handle a crying child. Okay - I'll get off my soap box. Matthew's oxygen saturation was in the 60's and the pediatrician was convinced it wasn't accurate but it made me nervous. He sent us on our way and told us nothing was wrong with Matthew. This wasn't a good enough answer for me. Matthew hadn't slept through the night in several days and would cough all night with a very barky cough. We went to see Kelly in the PICU and found out that Matthew had a double ear infection and croup. While we were there, they checked his saturation and blood pressure and they were okay. She gave us a couple of prescriptions and some comfort in having her check him over. Kelly is used to seeing Matthew and knows him as well as anybody having her check him gave us some peace.

Matthew's cardiologist called later that day to see how he was doing and gave me his cell phone number to call anytime we are nervous or scared. He was nice enough to tell me that if we ever have problems with another pediatric visit and don't feel like we are getting good care to call him and he will check Matthew for us. I can't say enough about the exceptional care we have received at the Children's Hospital and from his Pediatric Cardiologist. We feel very fortunate to live this close to a great hospital.

Matthew had an echo and everything looked great. Dr. Hasselman was a little concerned with Matthew's coarctation, but they were able to get a good view and could see that it was wide open - Thank God. Unfortunately, Matthew's blood pressure was high and his saturation was lower than his normal so Dr. Hasselman decided to recheck him on Wednesday when he would be feeling better. Craig took Matthew in yesterday and his blood pressure was still high and his oxygen saturation was 76. He "normally" runs around 84 - since his second surgery anyway. He is a little puzzled why this happening. He thought maybe the steroids Matthew was on may have caused the blood pressure to be high so we are waiting 2 weeks and we're going to recheck it again. Matthew was taking a blood pressure medication but we were able to wean him off it this summer. Dr. Hasselman mentioned we may need to restart the medication again but he would prefer to give it some time and recheck it when he is over this bug. He has no answer for the lower saturation level and indicated that he isn't going to be too concerned unless it drops more - Craig thought he saw some concern on his face in the office. So we will recheck it in 2 weeks too!

Short story, Matthew has high blood pressure and low saturations and we are not sure why. Craig and I are a little nervous and some what anxious for answers but we know he is receiving great care and they are doing their best to keep an eye on him. I have no idea if he could need his next surgery earlier than anticipated or if that is even possible. His second surgery happened much earlier than any of us were prepared for. We will wait and see if things are better in two weeks and try to hold off on the worrying until we know something is wrong.

I know one of the nurses in the PICU told us, "Welcome to the roller coaster ride of your life. You will have many ups but you will also have many downs." Wow, was she ever right. Just when you are sailing along something happens but the ride has been worth every up and down just to have Matthew with us.

I hope I haven't sounded too negative, I had to write to get some of the weight off my shoulders right now. I try not to worry but that is a lot easier said than done.

On an up note, Matthew has really mastered walking and is all over the place. It is so cute to see him waddling and climbing. He really knows how to work his charm. You should have seen him working all of the staff at Dr. Hasselman's office. He was getting anything and everything he wanted. He would randomly point at things and they would give it to him. He would flash that big smile and they would find something else to give him. What a stinker! Although, he knows how to work me too - he is a little bit spoiled and don't tell Craig, but I will admit that I would be the guilty party for this. I just hope and pray that I haven't created a monster. But who can resist that smile :)

We will let you know how things go in two weeks. Thanks for listening to me. I feel better already. Please keep Matthew and his doctors in your prayers so we can figure out what is going on.

Have a great Super Bowl weekend - Amy

We are walking . . .

2009-01-14T21:11:00.002-06:00

Matthew started taking steps last week and this week he is all over the place. He walks from room to room and loves to carry things. It is so cute to watch and he is very proud of himself. He will walk into a room with the biggest smile you can imagine.

My camera battery is dead but as soon as I get a new one I will record a little video so all of you can see how adorable Matthew looks. Watching him is our entertainment on these cold nights.

By the way, I'm not sure why we live in Illinois?!?! You have to love these temperatures. Stay warm and enjoy some cuddle time at home.

Happy New Year . . .

2009-01-03T23:22:00.006-06:00

It's hard to believe that 2008 has come to an end and 2009 is here. The older I get the faster time goes. It has been an incredible year. It's hard to believe that Matthew is almost 14 months old and Taylor is nearing her 4th Birthday. God was so good to us this year. He answered our prayers and pulled Matthew through his 2nd surgery with flying colors. We went home from the hospital in March and we haven't been back other than to visit. That in itself is amazing. We have tried to get back to life as "normal" but it will never be the same after everything Matthew has been through. I'm amazed at how good he looks and how well he has developed. He has so much energy that you would never guess he has a heart condition. I truly feel blessed but I have to admit sometimes I still don't understand why this happened to our baby boy. I know God has an amazing plan but I catch myself wondering how long will Matthew be with us and what will his quality of life be but then he comes crawling by with a big smile and I think it doesn't matter. We are so privilege just to have him today and I'm going to cherish each day and not worry about the future. God holds the future and He will give me the strength to endure whatever He has planned. He brought us this far and I'm looking forward to a wonderful 2009!

Here are some promised pictures of our holiday. We started off with Christmas Eve at our house. My Mom and Dad came and spent the night so they could see the kids open their presents.

Taylor woke up at 6:oo a.m. ready to open presents. She had her stocking down and ready to go before the rest of us were all gathered in the living room.

The kids picked out a new toy for Daisy. It was funny watching her tear into the paper.

We went to mys sister's house in Fort Wayne, IN. Matthew is enjoying his new drum that he received. Matthew enjoys anything he can beat on.

Taylor was so excited that Grandma remembered that she wanted a Princess umbrella.

On New Year's Eve, Craig's brothers and their families traveled from St. Louis and Rushville and spent the evening at our house. We rocked the New Year in by playing Rock Band. Our way of pretending we are still young. It was so much fun and the kids enjoyed watching us adults be crazy.

Matthew didn't make it to midnight but the rest of his cousins made it. They look wide awake for midnight! Anyway, that was our holiday. I hope your holiday was wonderful too!

Merry Christmas . . .

2008-12-28T22:24:00.002-06:00

I'm sorry it has taken me awhile to post. Life went crazy on us for the last few days. Matthew is on the mend and doing great. He finally started eating and acting like himself on Christmas Eve (he must have known Santa was coming). He has eaten non-stop the last few days, making up for the days he didn't eat. Unfortunately, Matthew passed his germs to Daddy but Taylor and Mommy have held strong.

We had a wonderful Christmas and enjoyed the family time. We left for my sister's house on Friday and just got home tonight. She lives in Fort Wayne, IN. It's a 5 1/2 hour drive and the kids did great. It was nice to watch our kids interact with each other. Taylor was very excited about staying at her cousin's house and getting to go to church with them today. Daddy spent most of the time in bed at our hotel. I'm tired so I'm heading to bed but I will post some Christmas pictures and some funny stories later this week.

Thank you for your prayers. We managed to stay away from the hospital and enjoyed a wonderful holiday season. I hope all of you a wonderful one too!!!!

Sick Little Boy . . .

2008-12-22T09:12:00.002-06:00

Matthew came down with a cold last week and decided to stop eating last Thursday. I took him to his pediatrician (whom was too busy to see us so we had to see her Nurse Practitioner - a frustrating situation). He ended up with an ear infection and head cold. His oxygen saturation's dropped a little but his blood pressure was 128/100. Not good. They took it 6 times by 3 different people. They tried to contact his cardiologist but he was out so they contacted who was on call. They decided to send us home by assuming it wasn't correct. Let's just say I was not happy with that decision. After everything we have been through don't tell me that his blood pressure being that high is just an inaccurate reading. Way to many emotions came flooding back. I sat in the parking lot at the pediatrician's office and had to have a moment to cry. I ended up calling the PICU and then called Kelly (from the PICU) on her cell phone. She called Dr. Fortuna (Matthew's surgeon) and they said it was most likely an accurate reading. If he was dehydrated at all this will cause stress on the heart and high blood pressure is a normal reaction. They told me to take him home and push the fluids. If he wasn't doing better than they would admit him for some IV fluids.

He did better through the day on Saturday and Saturday night he woke up throwing up. We pushed fluids all day yesterday and he was looking pretty yucky but finally kept some fluids down last night and he is a different boy today. We are going back to the doctor this afternoon so we will see what she thinks. Hopefully, his blood pressure is a lot better. We would prefer to spend this Christmas at home not the hospital (we love all of you nurses but would rather just stop in for a visit).

Keep Matthew in your prayers and the rest of our family (we don't want the flu). We try not to worry too much but it's hard not too when it comes to Matthew. I think it's a requirement of being a Mom.

Have a great week and we wish all of you a Happy Holiday Season. I will post again if we find out anything different from the doctor today.

Play date time . . .

2008-12-15T22:15:00.006-06:00

Matthew had his first playdate with one of his little heart friends (or should I say his first little girlfriend). Isn't she a doll! Matthew & Berkley had so much fun as did their Mommy's. They took great naps so we decided we should get together more often.

We went ice skating later that afternoon with our church and it was a little traumatic for Taylor. Let's say Taylor is not showing real promise in the coordination area. She started kicking her feet and caused Daddy to lose his balance and he sort of fell on top of her. She came up with a bloody nose and fat lip. Daddy felt horrible and let's just say Taylor picked up on it and worked her charm the rest of the day. I had to comfort both Daddy and Taylor. He was devastated that he didn't protect her. I have no idea how he is going to handle those teen years and the day some guy breaks her heart. I feel sorry for that guy. He is such a great father!

Here are some great shots of our Santa visit. As you can tell - both kids loved him. I have to admit he was a little scary. Taylor wouldn't tell him what she wanted and I asked her why. She told me she will just mail him a letter. Who can argue with that. Matthew just cried the whole time and when I picked him back up, he kept looking at Santa with a scowl on his face. Every parent has to have a Santa picture with a crying little one. A mandatory event.

Hope you are enjoying the holiday season and keeping warm.

So big . . .

2008-12-10T19:59:00.008-06:00

Matthew had his 1 year check up today. We are so proud of him. He is in the 25th percentile for his weight and 50th for his height. He is starting to catch up. It's amazing to see his progress on his growth chart. He went from being so low in weight that he wasn't even on the chart and then slowly we have gone from the 5th percentile and up little by little and now we are at the 25th. He has really been making some steady progress since his second surgery.

Our big event of the day - Matthew is standing up in the middle of the room all by himself!!! He is very proud of his accomplishment and claps. It's so cute.

We put up our tree last week and I was a little nervous as to how we would keep Matthew away from it. He has only tried to touch it once and I told him no that it's a pretty and that was all it took. He hasn't messed with it since.

We made our birthday present for baby Jesus by wrapping a box with a slit in it. We put money in it everyday for Taylor to take to church and give to baby Jesus. Matthew has been very curious as to the activities around the gift. I think he is trying to figure out how can get the bow off of it.

We have had a lot of Christmas talk lately and Santa is a very regular topic in our house. I'm enjoying the whole you better be good Santa is watching. It works every time. One problem - we were saying our bedtime prayers and had a conversation that went like this:

Taylor: Is Santa in Heaven?

Mommy: No, he is at the North Pole. Why do you think he is in Heaven?

Taylor: You keep telling me Santa is watching me so is he and Jesus in Heaven watching over us?

Mommy: uh . . . uh . . . no Jesus watches over us and keeps us safe and helps us to be good girls and Santa is just watching to see if he should bring you presents at Christmas.

Wow, I had no idea that questions can be so complicated at 3. How do you let them enjoy the whole Santa thing and teach them the real meaning of Christmas. She does enjoy the nativity story we read. Children definitely retain more than we give them credit for. I love bed time conversation. You never know where it's going to lead. These times are priceless!

On a side note, here is a picture of what happens when Daddy does your hair . . . . .

We are having fun in the Orwig House this December. We were thinking back to the fact that we were sitting in the hospital most of last December and didn't go to one Holiday party or family get-together. What a difference a year can make. We are so happy to be together this year!!

Happy Thanksgiving . . .

2008-11-28T22:40:00.001-06:00

We had such a wonderful Thanksgiving. It was amazing to be with all of our family over the holidays and have Matthew crawling all over and in the middle of the action. We went to Lincoln on Thanksgiving and had an amazing time with Craig's family.

We have so much to be thankful for this year but most of all I am so thankful for my Family. Craig, Taylor and Matthew - I love you all so much!!

I hope all of you had a wonderful day too! We are going to my Grandma's tomorrow for my family Thanksgiving. I will post some new pictures of the family get-togethers soon. Have a great weekend.

More Pictures . . .

2008-11-21T11:05:00.011-06:00

We are enjoying our little one year old. He now has 4 teeth on top and 3 on bottom. He took his first two steps this week. He loves to cruise the furniture but he hasn't been brave enough to let go except one time. He got his flu shot this week and will be receiving his 2nd Synagis shot today (for RSV). Hopefully, we are all prepared for the germs that float around the holidays.

We are so excited for Thanksgiving and Christmas this year. Last year we were at the hospital and had Thanksgiving dinner in the cafeteria. A little depressing but look how much we have to be thankful for this year.

Matthew's one year pictures. Look how good he looks. He can even have blue on and it doesn't make him look blue.

A little cake time at the studio.

Birthday Party Blast . . .

2008-11-10T09:29:00.014-06:00

Matthew's Birthday Party was a lot of fun. We had a wonderful turn out even in spite of the cold weather (Close to 100 people). Craig and I were overwhelmed with the amount of people who came and how much love they have showed our little boy. Thank you to everybody for making Matthew's first birthday extra special!

Here are a few pictures of the wonderful day.

Matthew had his very own cake.

He didn't like his fingers being messy so he decided to dive in with his face.

Grandpa , would you like a bite?

Daddy, you need a little color in your hair. There, now you look good!

Mommy, I'll share with you too!

Opening presents is hard work!

Wow, this is so much fun!!!

I need to show my cousins how this works.

The days ended with an exhausted Matthew (Mommy and Daddy too) but it will be a day that we will always remember and cherish. Thank you for being part of the first year of Matthew's life. Matthew's road has been an amazing journey and we would love for all of you to continue with us!

Memories . . .

2008-11-04T15:11:00.003-06:00

This week has started off as a week of mixed emotions. Excitement over Matthew's 1st birthday and tears over the memories of the past year. I remember last year at this time and the scare of going into labor and never knowing if Matthew was going to make it through the first few days of life or the first surgery. There are no words to describe the feelings we experienced during those days. The love I had from the moment I saw him but my mind kept telling me not to get too attached. The day I handed him over to surgery and never knowing if I would ever hold him again and then seeing him after surgery. He didn't look like the little boy I left in the hallway. He was three times as big (due to the swelling), his chest was wide open and he had so much equipment attached to him that you could hardly move around his room. Look how far we have come. That little boy changed my life in so many ways and all for the better. He has been worth every tear and every long night. He fought so hard just to breathe and now he crawls all over as if nothing is wrong. WHAT A MIRACLE! I love waking up to him screaming for me to come get him, I then know we have one more day to cherish and Lord willing many more days and years.

He was all cuddly and giving lots of kisses this morning. He is such a lover. His mommy needs him as much as he needs me!! I truly feel blessed.

Trick-or-Treat . . .

2008-11-02T22:27:00.012-06:00

Halloween was a lot of fun this year. Wow - can you believe the weather we had! Taylor has been anticipating the day for weeks.

We had some family fun on Thursday by carving pumpkins. Taylor did not like the inside of the pumpkins. In Taylor's own words, "It's too yucky!"

We still enjoyed the time together. Unfortunately, it was past Matthew's bedtime so he didn't join in the family fun.

Matthew was a puppy and Taylor was Little Red Riding Hood. They were so cute! Here are a few pictures to show how cute they were.

Matthew didn't mind his costume at all. He was enjoying being part of all of the action. He loves to be busy.

Taylor and her friend Dylan. We are going to use this picture as blackmail when they get older. Taylor looks like she is flirting all ready.

We had fun. Hope your family did too!

Birthday Party . . .

2008-10-28T20:09:00.006-05:00

You are invited to join us for birthday fun and celebrate Matthew turning one. We will be hosting an open house on Saturday, November 8th from 2-5p.m. at Johnny's Coffee House (Banquet Room), 110 E. Mt. Vernon (Rt 116), Metamora, IL 61548.

Matthew officially turns one on November 6th. What a year it has been. On one hand, I can't believe he is going to be year old but on the other hand, it has been the longest year of our lives.

A lot has changed in our lives this past year. Having children is a precious gift from God and having Matthew made it so much more evident. Matthew truly is our miracle baby. We have no idea how long Matthew's heart will keep going but we cherish everyday and wouldn't trade him for anything. This special birthday has caused us to reminisce. We will be posting Top Tens over the next week as his birthday draws closer.

TOP TEN THINGS I HAVE LEARNED:

10. The spotted cow at the hospital has a great mocha.
9. How much we hate to eat ham salad, egg salad, or tuna salad (thanks to the many box lunches we had at the hospital!)
8. I really did enjoy caroling at Christmas time with the lady who drives the trolley that takes you down the long hallway at the hospital entrance.
7. You can't eat in the Intensive Care waiting room. I got in trouble once from the waiting room Nazi. They are not very nice in there.
6. I can function on 3 hours of sleep a day (barely). Between the medications, shots, feedings, monitoring, charting, and Matthew's colic, it left very little time to sleep.
5. We don't worry about the little things or in other words we don't sweat the small stuff. They really don't matter. For example, when our basement flooded this spring and our shed was torn apart and our roof leaked this fall in the grand scheme of things they are just things and we still have our family.
4. What amazing friends and family we have. No matter what we needed somebody was there providing meals, shoveling our driveway, watching Taylor, cleaning our house, sending cards of encouragement and most importantly praying for us. We can never repay you for all you have given but we will ever be grateful.
3. We appreciate the little things. Things we would have ignored before.
2. Everyday of life is a precious gift. Watching Matthew fight for every breath and every heart beat made me realize how much I took life for granted. Life is so so precious and definitely worth the fight.
1. God is always there to carry us when we can't go any further!

I will add some more top tens later this week. We would love to see all of you at the open house! If you think you may be able to make it drop me an email at amyg75@yahoo.com. By the way, isn't he a cutie?!!

Good Reports . . .

2008-10-17T10:14:00.002-05:00

Matthew had an appointment with his cardiologist on Tuesday and we received a glowing report. He had an echo done and it was so funny because he decided he knew how to run it and was going to take over the equipment and do it himself. When they went to take his blood pressure, he stuck his arm straight out and held it there until they were done. I guess echos and blood pressures are routine for Matthew. His oxygen saturations were 85. That was nice to see. Dr. Hasselman said he looks great and we were able to take him off of his blood pressure medication. That was exciting news. We are only taking one medication now and his baby aspirin. We sure have come a long way and it is so exciting to be down to so little medication.

His only concern for Matthew right now is his coarctation. Apparently, one out of three coarctations will have a recoarctation. They will keep an eye on his and we will pray that he will beat all odds and not have this problem. We started discussing surgery #3 and my heart sank at the thought of it. I going to try to forget it for the next year and enjoy each day we are blessed to have him. Hey, we don't have to go back for 6 months. Can you believe that?!! How exciting.

Just wanted to post the good news. We are getting close to Matthew's first birthday and I will be letting everybody know of our big plans for the day. We have so much to celebrate this year!!

Fall Fun . . .

2008-10-09T15:45:00.013-05:00

Okay, finally I'm updating with some pictures. We went to Chicago with Daddy on a business trip and had a blast. While Daddy had some meetings, we shopped Michigan Avenue. Lots of fun. We had supper at The Rainforest Cafe. Matthew enjoyed watching the fish while we ate but Taylor was a little nervous with the thunder and lightning so she spent some time on Daddy's lap.

Our next stop the American Girl Doll Store. Let's just say that Taylor and Mommy were in awe! Daddy not so much. Although, the look on Taylor's face was enough to keep Daddy there for almost 2 hours and yes Taylor got her first Bitty Baby. She hasn't slept a night without her and she named her Susie.

I'm sure we will be back for another visit soon. We ended our visit at Millennium Park downtown and Taylor had a ball playing in the water.

On Sunday, we attended our first Annual TOUCH picnic for all the heart children. Matthew was asked to be the child that was used for their press release. Craig and I were interviewed and what an amazing day it was. We ran into all of the other families that we spent so much time with while we were in the hospital. It was an emotional day to see how well so many of them are doing. The picnic consisted of clowns with balloons, blow up jumping things (don't know the technical name), face painting, crafts, a raffle drawing, and lunch. The following picture is of Matthew with Kelly, PICU Nurse Practitioner. She helped us in so many ways while Matthew was going through his tough time and Matthew grew quite a liking for Kelly.

We spent some time enjoying the beautiful fall weather today by going to the park with some friends. Matthew had a ball crawling around in the leaves.

It's not easy trying to get 2 three year olds and 2 babies to all look at the same time but hey they still look cute! For some odd reason, Matthew seemed fascinated with his little buddies ears, Thankfully, Zavier doesn't seem to mind.

Well that wraps up the past few weeks. Thanks for keeping up with our site. Have a great Fall Day!

Opps!!

2008-10-07T22:34:00.002-05:00

I tried to make some creative changes and screwed everything up. We are getting the site back to normal and as soon as we do I have a ton of new pictures. I think I better leave things alone!!

Flu Breakout . . . Ugh!!!!

2008-09-21T20:03:00.002-05:00

Another crazy week in the Orwig household. We woke up last weekend to a leak in our roof that did quite a number on Taylor's bedroom. To make a long story short - Taylor has moved into our bedroom, her toys and dressers have invaded Matthew's bedroom and we had to tear out carpet and a wall due to mold that started growing. We are still waiting on an insurance adjuster to come out. Due to the hurricane, all of their adjuster's' are down south. We finally have one scheduled to come out on Tuesday. It's going to be a crazy few weeks until the roof gets fixed and we are able to re drywall and get new carpet installed.

Due to the mold, the kids and I went and stayed with my Mom and Dad for a couple days until Craig was able to tear out the carpet and the walls and then he treated the mold that grew so quickly. On Wednesday, Taylor came down with the flu, Matthew and Mommy followed. Daddy was scared to come home but he braved it and then he ended up with a touch of it. Today is the first day that nobody got sick. Yeah - I think we are on the mend.

Can we expect anything less. This seems to be the way our year has gone. Although, God has been good to us. Matthew is doing well and it could be a lot worse. Laughing about our year, Craig and I have decided that we are looking forward to 2009. A fresh new start.

Next weekend is the TOUCH (The Organization for Understanding Children's Hearts) picnic at Wildlife Prairie Park. We are really looking forward to it. It will be a nice reunion with all of the other parents and children we met and to get caught back up with the doctors, nurses and staff that made a difference in Matthew's life. I will post some pictures next week.

Here are a few of Matthew's favorite things . . .

2008-08-29T15:02:00.009-05:00

Matthew is very busy these days. Exploring is his main objective for the day. He is becoming very fast with his army crawling. Here is a glimpse of a couple days in the life of Matthew.

Climbing onto things . . .

Bath time (always a lot of laughs) . . . . . .

Watching out the front door (He and Daisy make good guard dogs although combined weight is only 33lbs) . . .

Daddy taking he and sister for rides in the laundry basket . . .

We can't forget his heart healthy exercise program that consists of many push ups.

It doesn't get much better than this!!

Internet Problems . . .

2008-08-28T21:47:00.002-05:00

I have new pictures to post but our Internet at home is having problems. It has been a week and it's amazing how much we rely on it. For some odd reason it has started working tonight. We have a repairman coming tomorrow. After it is fixed, I will post some new pictures.

Matthew is army crawling everywhere and is staying busy by exploring. He is loving his big sister's room. Her book shelf and kitchen set can entertain for an hour. I will post some pictures tomorrow after we are back up and running smoothly.

Have a good night.

Our big boy . . .

2008-08-13T22:54:00.001-05:00

Matthew has learned how to go from laying down to sitting up all on his own. He was crying in the night so I stumbled out of bed to check on him and found him sitting up looking at me. Time to lower the crib. Here are some pictures of Matthew helping Daddy with the crib. He thought it was a lot of fun to be under the crib with his daddy. Although, Taylor was a good helper too.

Matthew has started getting up on his knees and rocking. He thinks he is big stuff. It is so cute to watch. I just love this stage. We have an appointment with the pediatrician next Friday to receive his 3rd set of immunizations (finally we will be caught up). Nothing else to report.

What a ham! He is such a character.

I hope all of you are enjoying this beautiful weather we are having. Have a great day!

Another Dr. Appt . . .

2008-07-30T22:02:00.002-05:00

Here we go again - back to the doctor. Matthew decided in the last 2 days that he no longer wants his bottles. He only took 18 ounces in a 24 hour period. This was barely enough to be hydrated. We went to see his pediatrician this afternoon and found out he has a nasty sinus infection. I thought it was his teeth. This boy keeps me going. He is such a stinker and we never know when to worry and call the doctor and when to give it time. I told this to his pediatrician today and she said that Matthew is a special case and that I should always rely on my instincts and better safe than sorry. He is starting on an antibiotic and she gave us some tips on keeping him hydrated. Life is never boring with Matthew but he is worth every bit of it.

Our Summer...

2008-07-29T22:38:00.005-05:00

Okay, I know I'm a little behind on updating. I've had several emails asking when I'm going to update next so I'm finally doing that.

We are having a great summer. We took a week off over the 4th of July and spent some quality family time around home. Matthew is doing great. He is finally sitting up on his own. He is rolling all over the floor and he just started getting up on his knees and rocking a little. Where has time gone? He is growing up so fast! His 2 bottom teeth are so cute. He loves showing them off. We think he is working on those upper ones now because his gums are swollen and he chews on everything.

Taylor is a huge help with Matthew. He admires her so much. He is constantly watching her and wants to be right next her. The cutest thing is to see them playing together. She loves to cook with her play dishes and Matthew eats everything she cooks. He sits right in the middle of all of the dishes and Taylor serves him. She also loves reading to him. We love listening to the stories she tells him. She has a very vivid imagination. Bath time is also a big hit in our house. They love to play in the tub together, sitting and splashing.

We went to Wildlife Prairie Park and the kids loved it. Here are a few pictures and a video of our fun day.

Taylor's backyard sprinkler fun with her cousins Jordan and Brandon...

July 4th was so much fun. Craig's brother and his family came over and the dads camped outside with the kids. I stayed inside with Matthew (I'm not much for tent camping!). Aunt Patty decided to stay inside too.Taylor enjoyed it so much that she keeps asking to do it again. We had a camp fire and we enjoyed some fireworks that daddy and Uncle Chad displayed for us.

Matthew was very cranky for a few weeks and was having some screaming episodes at night. I called his cardiologist and he wanted to see him. They had some concern with the coarctation of the aorta. Matthew had an echo done and everything came back okay. Matthew is so much more active now so having the echo done was very interesting. Thank God for Gerber Puffs. He ate half a bag and we dipped his paci in Sucrose (sugar water - one of Matthew's favorites in the PICU). Dr. Hasselman decided to run some lab work while we were there to make sure his medications aren't damaging his kidneys. They came back fine too. We are leaving him on his blood pressure medication awhile longer before we start weaning. He is still running on the high side. All in all, we are assuming the fussiness is from teething. Matthew doesn't have any tolerance for pain, but then again who can blame him after everything he's been through.

All is well in our family. We're just enjoying our summer and some great family time. Thanks for keeping up with our family progress. Matthew is doing well and he is has joined his sister in being the highlight of our summer!

We have teeth . . .

2008-06-28T00:12:00.003-05:00

Matthew finally has teeth. Boy those were tough to cut. We had a grouchy boy for a few days but He sure is cute with them. One came through and 2 days later the second one broke through. We are on vacation this next week and looking forward to some much needed relaxation.

I'll try to post some pictures of our new teeth later this weekend. We are still saying Dadda all of the time but no Mamma's. I'm trying but he seems to enjoy the "da" sound more than "ma". Oh well, my time is coming (I hope). We just wanted to give you an update on the latest news in the Orwig house. Have a great day!

Happy Father's Day . . .

2008-06-16T22:00:00.001-05:00

We had a wonderful Father's Day weekend. Craig and I went to see the Cubs play at Wrigley on Thursday with Craig's brother and wife. We had a great time. On Saturday, we went to a family picnic for my Mom's side of the family in Canton. Matthew enjoyed all of the attention and had Grandma & Grandpa wrapped around his finger. Our big news is that Matthew started saying Dadda this weekend (what a smart boy to plan that on Father's Day weekend). Craig was on cloud nine all day!

We had another well baby visit a week ago and Matthew is doing great. His weight is in the 5th percentile but he is steadily gaining. Dr. Christison gave me some suggestions to incorporate extra calories in his day. One is to crush up graham crackers and put in his fruit and crushed club crackers in his veggies. He seems to really like it. We are working on sitting up and if he hasn't accomplished this by the end of the month then we will start physical therapy. She told us this is typical of heart babies and she's not worried about it. We started using a Bumbo (suggestion from Dr. Christison) to help him sit up and it seems to be helping.

On a side note, Taylor started gymnastics and is loving every minute of it. She is so cute in her leotard. There is a ballet class going on at the same time and now she is determined that she is taking ballet too. Maybe this fall - we will see. I wish I had half the energy of a 3 year old.

Nothing else to report. We are doing great.

Telethon Update...

2008-06-05T22:45:00.001-05:00

We don't have a final total but I know we raised approximately 1700.00. Wow! We have been very overwhelmed with everyone's generosity. Thank you so much. The last 6 months have shown us how many selfless wonderful friends and family we have and we appreciate every one of you.

I really enjoyed talking to those of you who called in on the day of the telethon. I started off with a training session and then Matthew and I went immediately on stage to answer phones. Matthew was on my lap for 2 hours and never fussed a bit. He seemed to be enjoying the spotlight. The TOUCH (The Organization for Understanding Children's Hearts) hour was one the biggest hours they had. I sat next to a Doctor who happened to be the Grandpa of a little girl (Berkley) who has Hypoplastic Left Heart Syndrome. We met her a few weeks ago in the PICU during one of our visits. It was interesting to share stories of our journey and talking about all of the ups and downs. It was an exciting day to see all of the heart children playing. You would have no idea that they have such serious heart defects. We left the day with mixed emotions. Excited that we were able to give back to the hospital for everything they've done for us and sad for some of the families who have either lost a child or are still hurting as their child is struggling with their heart defect.

For those of you who weren't able to watch it, Matthew made his debut by grabbing the microphone from Christine Zak, a news anchor that stopped to interview Matthew and I during our telephone hour. She said that she believes Matthew has a future in broadcasting. When Matthew wasn't grabbing the microphone, he was chewing on the phone cord, eating paper or smacking the 6 year old heart child next to him. He was so funny and entertaining.

Here are a few shots of our day. Thanks again. Our hearts were blessed by your generosity.

Matthew still showing off at the end the day. He doesn't even look tired for having no afternoon nap. The picture below is him doing his fishy lips. What a character!

Sorry . . .

2008-06-02T22:04:00.002-05:00

It has been one of those Mondays and I haven't had an opportunity to upload our pictures. I'm fighting allergies so I'm dragging today and we just finished planting a small garden. I promise I will have some pictures real soon. Thanks again for all of your donations - as always you have done so much for us. Check in later and hopefully I'll be more organized.

A Wonderful ... Successful Day . . .

2008-06-01T22:52:00.002-05:00

Just wanted to say many thanks to everybody. It has been a long and wonderful day. The whole family is completely exhausted so I will post more details of our day tomorrow evening. We have lots of pictures to show. For those of you who weren't watching, Matthew tried to take over during the telethon by taking the microphone. It gave us a good laugh. Thanks again and we will give more details tomorrow!

Love, Craig, Amy, Taylor and Matthew

Telethon

2008-05-31T22:44:00.003-05:00

Just wanted to remind everybody that the Children's Miracle Network Telethon is tomorrow (Sunday). We will be answering phones from 3 to 4 and we will be there for the Finally from 4 to 5. Our phone number will be 309-495-0685. for those of you who are planning to call in tomorrow. We would like to thank all of you who gave before the telethon which helped us beat our goal of $500. The telethon is being aired live on WEEK Channel 25. We will post some pictures of the telethon tomorrow or Monday. (I've received several calls asking for some new pictures).

Thanks again and we hope to hear from some of you tomorrow!

Children's Miracle Network Telethon

2008-05-19T09:50:00.003-05:00

We recently sent this email out to to a large number 0f family and friends. Pretty much anyone we could think of. Please read it and consider donating.....

Hi Everyone,

We want to share a story with you. Some of you already know it and some of you may be hearing it for the first time.

In June 2007, during a routine ultrasound we were informed that our unborn baby boy appeared to be missing one of the chambers in his heart. After a few months and multiple tests our baby was diagnosed with a rare heart defect called Hypoplastic Right Heart Syndrome and we were told that it would take 3 open heart surgeries to give him an opportunity to survive.

Our miracle baby, Matthew, was born on November 6, 2007. He had his first open heart surgery 6 days later. Over the next few months he was in and out of the hospital for various reasons, but he always pulled through. In February, Matthew had his second open heart surgery at 3 1/2 half months old. It has been a long road, one we never imagined in our wildest dreams that we would travel. Recently, we celebrated Matthew's 6 month birthday and we couldn't be happier.
Matthew is a thriving, happy, wonderful baby boy. He has been worth all of the sleepless nights, all of the endless days at the hospital and all of the hours upon hours of worry. God's hand has been on Matthew's life and we can't wait to see what plans He has for him.

We were blessed with the opportunity to have Matthew treated at the Children's Hospital of Illinois. We know that we would not have Matthew with us today if it wasn't for each one of the surgeons, cardiologists, intensivists, nurse practitioners, and nurses at the Children's Hospital.
Although we can never thank them enough, one way we are going to try is by volunteering to support the Children's Miracle Network Telethon. The Telethon will be from 10 AM to 5 PM on Sunday, June 1 and will air on WEEK TV 25 (NBC affiliate). Amy and Matthew will be answering phones for the telethon during the Heart Hour from 3 to 4 PM. Our goal is to raise at least $500 (25 people donating $20-that's reasonable) prior to sitting down to answer the phones. All of the money raised through this telethon will go directly to Children's Hospital of Illinois. We want to do whatever we can to give hope and healing to other parents and children who are about to embark on the same journey we are on. Matthew has one more surgery in his future and anything we can do to make this hospital the best it can be will give Matthew and other little heart babies their best chance at life.

Please consider donating in celebration of Matthew's life. Any amount will make a difference.

If you would like to support our fundraising efforts please click on the link below. From there you can click on "To make a one time pledge to the Telethon".

As you enter your information you will be able to designate your gift in honor or memory of someone special. Please donate your gift in honor of Matthew Orwig. You will be able to make your tax-deductible donation on the secure website using your credit or debit card. Don't forget to indicate that your gift is in honor of Matthew Orwig to ensure we are notified that your gift has come in Matthew's honor.

Click here to donate (or copy and paste into your browser):

www.childrenshospitalofil.org/top/foundation/telethon)

Children's Hospital of Illinois cares for the sickest and most severely injured babies and children. In 2007, over 5,000 children were admitted to Children's Hospital of Illinois staying over 30,000 days total. Children's Hospital cares for each child with the greatest care and love in an environment that focuses on family-centered care and has the most medically advanced equipment and support programs available.

We sincerely hope that you will take the time to support Children's Hospital of Illinois. Please don't hesitate to call or email us if you have any questions.

Craig can be reached at 309.645.8928 or c_orwig@yahoo.com

Amy can be reached at 309.303.8371 or amyg75@yahoo.com

Thank you so much for your help.

Sincerely,
Craig, Amy, Taylor and Matthew Orwig

P.S.
You can call Amy and Matthew while they are answering the phone live on television from 3 to 4 pm on June 1 by calling 309.495.0685. This will be her direct line that day. She would love to hear from anyone during the broadcast, even if you donate prior to the day of the telethon.

Happy Mother's Day . . .

2008-05-12T21:30:00.002-05:00

I had a wonderful Mother's Day. This year was extra special with my beautiful daughter and my handsome miracle boy. Daddy and Taylor woke up early and fixed me heart pancakes for breakfast and they did the dishes too! They bought me a beautiful necklace and Taylor was very proud that she was able to write lots of T's and O's in my card (T for Taylor and O for Orwig). Matthew was a character all day. His new thing is to imitate faces you make at him. He loves to do fishy lips and then he laughs at himself. It's so cute. His new milestone this past week was that he rolled from his back to his belly and then back to his back. We were so excited.

We went to the cardiologist last week and had a glowing report. His blood pressure was back to normal so we have removed his blood pressure patch. We are down to 3 medications!!!!! In fact, things are going so well that we don't have to go back for 3 months. We stopped by the PICU for a visit and enjoyed seeing everybody. The nurses couldn't get over how big he is getting. They were also amazed to hear how much happier he is. They enjoyed the little faces he made and how he played shy. That's pretty much all for now. Oh - I almost forgot - his weight was up by a pound. Yeah!!

Memories . . .

2008-05-04T17:54:00.003-05:00

Nothing new to report. We are enjoying our normal life (or what is normal for us now that we have a heart baby). I went scrapbooking this weekend for National Scrapbook Day and worked on Matthew's album. I now have 64 pages done. Craig and I sat and looked through it together last night and what a flood of emotions. It is so hard to believe what has happened over the past 6 months. Matthew has come a long way and you would never know by looking at him that he basically has half of a heart. It's amazing to see how God's hand is over his life each and every day. We have cherished every moment we have with him and have grown a lot together. We truly feel blessed. I would love to share his album with any of you.

Matthew has a cardiologist appt on Tuesday and we are hoping his blood pressure is back to normal and that we can start weaning again. We will let you know how it goes. Hopefully his weight gain is up too! We are going to go visit our hospital family in the PICU while we are there. It's been awhile since we've seen them. Enjoy this beautiful weather!

Life is Great . . .

2008-04-24T13:15:00.002-05:00

We've had a lack of updates due to life getting back to normal and things are going great!! I am starting to fall into a routine with work and Matthew is doing great at the babysitter's. In fact, he is becoming so attached to Nana that he doesn't like her to leave the room. It's good to know that I'm leaving him with somebody who loves him and whom he loves.

Thanks for all your prayers within the past few crazy weeks. We finally have everything cleaned up (we had to throw all of our basement carpet out) but we just laugh when we think back on it.

Matthew saw Dr. Fortuna, cardiac surgeon, last week and he released him from his care. Yippee - that means one less doctor's appointment. Matthew's blood pressure was too high so we have to stop the weaning of one of his medications. His blood pressure has been such a puzzle to the doctor's. They can't explain why it gets so high. Dr. Fortuna thinks this time it may be due to weaning his Chlonidine too quickly. We're hoping this is the case. At the appointment, he told me that Matthew's 2nd surgery and recovery can only be described as phenomenal. Wow - can you believe that? God definitely answered our prayers.

We can't put into words how well Matthew is doing. He is a very happy baby and has a wonderful personality. And I know we are his parents but he is such a cute baby too. He is starting to move all over and is development lots of coordination and we have signs of his first tooth coming through.

One last thing, please continue to pray for Matthew's weight gain. He is not a good eater and is too comfortable with just eating 2 ounces and stopping. Getting him to take his whole bottle is sometimes a lot of work. He has been gaining but slowly. We increased the his formula to a 27 calorie mixture and we're hoping this will make a difference.

In all, we feel that things couldn't be better and we are really counting our blessings!

Back to our Routine . . .

2008-04-15T22:37:00.000-05:00

We ended my last week at home with a bang. After our whole car incident and the thermostat going out, we woke up Friday to our basement full of water. Our sump pump is on the same outlet as our pole light outside and it tripped the breaker. Needless to say, we spent the whole weekend tearing out carpet and drying our basement. During our clean up, we heard a horrible noise and came upstairs to watch our shed being torn apart from the wind. I think this was God's way of making me glad to go back to work. One positive from the weekend is that we finally were able to get Matthew's pictures taken. Here are some of our favorites.

This week is going much better. I started back to work on Monday and survived my day with no real problems. I was a bit emotional as I left Matthew for the first time. I called multiple times to check on him and he seemed to handle it better than his Mom. It was nice to get back to a routine. Now, we are all trying to adjust to getting up and out of the house early. Matthew goes to see the surgeon on Thursday and I will let you know how that goes. I'm hoping that he has gained some weight. We are so pleased with his progress and I know the surgeon will be thrilled to see how well he is doing. We are hoping to stop by the PICU and see all of our friends.

It sure feels good to be back to normal!!

Great Reports . . .

2008-04-10T10:00:00.002-05:00

This has been a very unusual week. We started the week off with our SUV breaking down with all 4 of us waiting for Craig's dad to pick us up. We had it towed and $960 later we are back to 2 vehicles. I was taking the kids to the sitters on Monday so Matthew could have some time to adjust to them and when we got there the flu had just started in their house. Needless to say, we went home. Then . . . we woke up in the middle of the night to a sick dog and noticed that the house felt cold. Our thermostat has gone bad and we are taking the dog to the vet. Thank God for a fire place to keep us warm. With all of that being said, Matthew is doing great. Craig and I have laughed so much this week. If all of this had happened before Matthew we would have been in tears, but our experiences with Matthew have helped us put life into perspective.

On the positive side - Matthew saw Dr. Hasselman, his cardiologist, on Tuesday and received a glowing review. Everything looks great and we have started on a weaning schedule for one of his medications. He should be off it completely in 2 weeks and then we will wait 2 more weeks and start weaning another one of his medications. This is so exciting for us. The doctor's staff could not believe how much Matthew has grown and how interactive he is. He was loving all of the attention. Dr. Hasselman was playing peek-a-boo with Matthew and was amazed at the difference in his personality. Matthew used to cry non-stop every time we were there. They love seeing him grinning and so much happier.

Yesterday, we had our first well baby visit with Matthew's pediatrician. It was wonderful to have a "regular" baby check up. Matthew weighs 13.4 lbs and measures 26 inches in length (although, he measured 26.5 inches at the cardiologist's office). He is in the 65th percentile for his height, but only the 10th percentile for his weight. He's is a little more than 3 lbs underweight. Our pediatrician is not overly concerned at this point due to everything he has been through. We are going to keep a close eye on it and they may increase the calorie content of his bottles. She told us to start baby food and that will help him add calories. We had a video of his reaction to the baby food so all of you could laugh with us but I accidentally deleted it this morning (another crazy thing!!). He's not so sure of prunes (what she recommended we start with). The faces he made were priceless. He received his first set of immunizations and handled them like a pro. Getting 2 shots a day for the first 4 months of his life life toughened him up a little. We were also proud to hear that Matthew is right where he should be developmentally. We were told that he may lag behind because of everything he's been through and may require some physical therapy. We attribute this good news to everybody's prayers!!

It has been a crazy week but having such good reports from Matthew's doctors made us smile every day. Our pediatrician was telling us that she was very nervous when she saw Matthew before his surgery. She didn't want to scare us, but he was showing so many signs of heart failure and now he looks great and she couldn't be happier with his progress. He is a fighter and will always be our little miracle boy.

Please pray for me as I head back to work next week. It will be so hard to hand Matthew over to somebody else's care even though I know he will be fine. Also, pray for our sitter, she is nervous as anybody would be and she hasn't had an opportunity to get used to him yet. I know she will do great but I'm sure she could use the prayers for her peace of mind. Take care and thanks for caring enough to read about our little boy's progress. It means so much that we have so many family and friends who love us.

Matthew Has A Lot To Say . . .

2008-04-02T17:00:00.010-05:00

Matthew is growing and doing well. He talks all of the time and is so much happier! He sleeps through the night and has finally started a morning routine that is like clock work. I'm still working on a routine for the afternoon. I'm all about the schedule (it works best for the kids and me).

I have one more week at home and will be heading back to work 3 days a week the following week. Hopefully, Matthew will adjust to the new routine and take it easy on his sitter. We have several doctor's appointments next week and Matthew will finally start on his immunizations. He had his last RSV vaccine today and was released from Home Health Care. One less thing!!!

Matthew's personality is really developing. He is so funny. He talks and talks and talks (I have no idea where he gets that trait) and loves chewing on his hands. Taylor is his main source of entertainment and she can get him to laugh quicker than anybody. His new thing is to blow bubbles and make a funny noise while doing it. He is so interactive and we are enjoying every minute of it.

Matthew is a Momma's boy and I love it. Taylor has always been a Daddy's girl so it's nice to have my time too! Sorry for the lack of updates. We are enjoying the quiet time and living a normal life again. I will update next week after all of the doctor appointments. By the way, Matthew hit 13 lbs today and we felt like throwing a party. What a milestone!! He will be back on the charts before we know it.

By the way, Craig and I have volunteered to answer telephones for the Children's Miracle Network telethon that will be aired on NBC in June. Matthew will probably get to sit with Mom during the TOUCH hour which is for all of the heart kids that have stayed at the Children's Hospital in Peoria. We will be providing some information on how you can help make the telethon a success for us very soon.

Have a great day!

Happy Easter . . .

2008-03-23T22:50:00.000-05:00

We hope all of you had a wonderful Easter. We started our holiday by going to the Orwig/Davis Family Easter in Lincoln on Saturday. It was so nice to see everybody and catch up with all of our family that we missed over Thanksgiving and Christmas. It's official - Matthew is most definitely an Orwig (the resemblance with Matthew and our nephew Keith is amazing). I guess he does have his mother's blond hair but that's about it.

Taylor jumped out of bed to see what the Easter Bunny left and was very worried that the Easter Bunny didn't leave daddy a basket but he did remember Matthew. The best part of the day was getting to go to church as a family. We have missed being able to take Matthew with us to church and it was wonderful to be able to celebrate the risen Savior with all four of us together.

Taylor could hardly wait to wear her Easter dress. We met Jeanai at Grandpa and Grandma Orwig's house. They we're so excited to show off their dresses. I love having a girly girl.

Matthew was so exhausted after having 2 days out in a row that he slept the whole afternoon and fell asleep tonight before he finished his bottle.

It was an absolute wonderful weekend (even with the snow) and we can't describe how wonderful it was to celebrate this joyful day with our family. Happy Easter!!

All is Well . . .

2008-03-19T21:14:00.002-05:00

Not much new here in the Orwig household. Matthew is sleeping through the night (YEAH!!) and we are working on a day time routine. I go back to work on April 14th. I have mixed emotions. I'm looking forward to getting out of the house and starting back into a routine but it's going to be hard to leave the kids. I'm only working Monday - Wednesday (a great schedule). We have a wonderful babysitter so I know that Matthew will be in good hands and will be loved on a lot. Taylor can hardly wait to go see Nanny and Poppy again. I guess Mom is starting to get a little boring. I've cherished everyday I've had at home with them.

It's nice to be able to write with nothing to report. I hope all of you have a wonderful Easter. This week has made me think a lot about our Saviour and what Mary went through watching her son die on the cross. After seeing Matthew suffer, I can't even imagine the emotions she went through. What an amazing Saviour to die for us!

Have a wonderful Easter and we love all of you!

Taylor's Birthday Party

2008-03-15T22:45:00.001-05:00

It was a big night in the Orwig household. We had Taylor's 3rd Birthday Party at Monicals Pizza and Matthew was able to attend. It was the first time our family has been out to eat together. It was a small party with our family but we were able to have the back room away from the public.

Taylor and her best friend Jeanai. They are crazy wild girls. We are not looking forward to the day they turn 16. We are going to have our hands full.

Taylor is a huge Cinderella fan so needless to say she chose a Cinderella cake for her birthday. Taylor tells us that she is the princess and her daddy is the prince. I hope we can keep it that way for a very long time!!

Taylor and Matthew enjoying Taylor's new Dora sleeping bag. God has blessed Craig and I with 2 beautiful children and we are enjoying every minute of it. There is nothing like being parents. It was a wonderful day and Matthew really seemed to enjoy all of the excitement around the house.

By the way, Matthew is getting better each day. The crying is improving, and we are trying to work on self soothing (something Matthew has never had to do since we weren't able to let him cry before his 2nd surgery).

We wanted to give all of you a glimpse of our wonderful day. Have a great weekend!