Slow and Steady and Tired...

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.

Our Summer...

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!

Back to our Routine . . .

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 . . .

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 . . .

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!

Home Again...

We just wanted to give everyone a glimpse of how Matthew started his day today and an even better glimpse of how his day ended. It's a pretty happy ending.

Matthew will be 4 months old tomorrow and we're happy to say that we got him home from his fifth and hopefully final stay in the hospital this afternoon.....for another 2-3 years anyway. As Amy mentioned before, the charting, measuring, weighing, monitoring...it's all done. Yeah!

We are still going to provide very regular updates on Matthew's blog, but we're also going to try to live some sort of normal life for a while and just enjoy a very smiley Matthew. From the day we got him home after the first surgery, the second surgery was never far from our mind, but surgery number three is so far away that just maybe we will be able to not think about it for a while. Instead, we will do a little day dreaming about what kind of plans God has in store for this little boy as he grows older....we have a feeling it's going to be something special.

Thank you all so so much for the prayers and support over the past four months. They have meant more than you will ever know.

Restful Sunday . . .

Matthew had a pretty good day. He is no longer on any pain meds except Tylenol. The only thing going through his IV is fluid to keep him hydrated. The highlight of our day was seeing him smile. We haven't seen that beautiful smile since he was being wheeled into surgery. It melted our hearts to see him finally feeling better. He is still uncomfortable when he is being held so he would rather be in his bed. Matthew spiked another low grade fever this afternoon. His blood work came back okay, but we are still waiting on the cultures.

Matthew is still refusing to eat. He seems to have a sore throat so we're not pushing him. He has done this to us before. Deb, one of Matthew's nurses, reported to Dr. Fortuna that Matthew wouldn't eat and asked his opinion. He answered by saying, "It's Matthew, he will eat when he decides he is ready." All we could do is laugh because we know exactly what he is saying.

We are hopeful that tomorrow bring lots of eating, no infections and some quiet rest. Sunday has been a great day and we are ending on a high note with that beautiful smile!

Slow But Steady Progess...

Matthew was able to get a little more rest last night. He was up 3 different times with a lot of pain but that's an improvement over his day yesterday. They're scheduling a renal ultrasound for today to rule out any problems with renal arteries. His blood pressure is unusually high and they want to rule out the renal arteries as a potential source of the problems. We probably won't have the results until Monday.

We forgot to mention that Matthew did get his drainage tubes and foley out yesterday. He still has pacing wires in his heart, an arterial line and multiple IV's.

He is eating very well when he's not in too much so that is at least one less thing to worry about.

As you can see Matthew hates his oxygen cannula. He wrestles with it until he pulls it out and then falls asleep. They switched to a low flow cannula but it hasn't helped.

Crazy Day . . .

Wow, what a week. I'm not even sure what day it is. Craig has been doing such a good job keeping the blog updated, I've been able to focus on taking care of Matthew. We came home early tonight to get some much needed rest. Matthew had a good day overall. His vitals look great and he seems to be recovering very well. This recovery has been hard to watch. He is in so much pain and wakes up screaming every 2 hours. His voice is very hoarse so when he cries he doesn't make much noise, he just turns red and his blood pressure and heart rate go sky high. It is so hard to see my baby in so much pain and there is nothing I can do to fix it. He looks at me with those big blue eyes and is so confused as to why I'm not picking him up and cuddling with him.

Matthew was given a bottle of sugar water to see how his stomach would handle it. Nurse Practitioner, Kelly, helped as we fed him. Matthew loves Kelly!

Matthew was given a bottle this evening and he ate 3 oz, what a champ! This seemed to relax him and he was sound asleep when we left.

Thank you so much for all of your prayers. God has been so good to us. The next few days will be tough for Matthew so please keep those prayers coming. We truly feel blessed knowing that we have all of you praying so sincerely.

Love, Amy

Surgery Wednesday...

Sorry about the quick end to that last post. I was surprised to have someone come tell me that Dr. Fortuna was talking to Amy about doing the surgery tomorrow instead of Thursday. Apparently since this has all developed so quickly they ran into a scheduling conflict in the operating room. They had an opening late in the afternoon on Thursday but Dr. Fortuna likes to be fresh when he operates on heart babies so they bumped his surgery up to tomorrow morning at 8 AM.

We still just can't believe how quickly this is all happening. We are so scared for our little boy and just ask that you all continue to lift him and his surgeons up in your prayers as they operate on his little heart for 6 hours tomorrow. We will do our best to provide as many updates throughout the day as possible.

So Many Questions....

Well, Mom was right. Amy took Matthew into the cardiologist office this afternoon to double check his oxygen saturation and unfortunately our machine at home was accurate. We took this picture a few days ago and you can see Matthew's saturation on the left (68) and his heart rate on the right (134). The day after we took this picture his saturation started dropping and has been running in the low 60's and upper 50's for the past 2 days.

Thankfully, Matthew's cardiologist came in to check Matthew over while we were there this afternoon and he felt that Matthew looked very cyanotic. He decided that Matthew should have the catheterization within the next few days, but he also thought that Matthew may be coming down with a cold (which would be his first) so they scheduled the heart cath for next Tuesday to give the cold time to run it's course. Amy just took Matthew's temperature and it's running 100.6 so he may indeed have a cold or he may be reacting to the RSV vaccine he received today.

What does this all mean? We're scared as usual. This is all happening too fast. Not just for our state of mind, but Matthew may be too young and too little for his stage 2 surgery. They would really prefer to wait until he's closer to the 6 month end of the 4 to 6 month range they usually perform this surgery in. He won't be 4 months for another 3 weeks.

This heart cath will be diagnostic and will be used to determine when they will need to do surgery and what they will need to do when he has it. If the heart cath shows that Matthew is outgrowing his shunt, but the pressure in his lungs is too high they will operate to replace the existing shunt rather than actually performing the stage 2 surgery which involves disconnecting the superior vena cava and reconnecting it to his pulmonary artery. When the doctor mentioned this we immediately said NO. We've heard too many sad stories where they added an operation between the first and second stages swapping the existing shunt for a larger one because they didn't think the baby was ready for the stage 2 surgery.

Please continue to pray for our family. Matthew is still very smiley and is almost always in a good mood. Amy and I feel like we could just throw up tonight.

Surgery # 2 Here We Come . . .

Matthew had to go in for routine blood work yesterday so we were able to visit all of our PICU friends on Valentine's Day. Matthew took the staff some chocolate and a Valentine to thank them for all the special care that he has received over the past 3 months. It seemed so appropriate to thank them on Valentine's (heart) Day. We also ran into one of his old partner's in crime, Brennan. Brennan was born a few days before Matthew and the two of them recovered from their first surgeries in rooms next to each other. He was also there for a routine check up. We had a great visit and shared stories of all of the ups and downs over the past several weeks.

While we were there a couple of the nurses noticed Matthew's coloring was more blue and the Pediatric Nurse Practitioner, Kelly, noticed it too. She asked if we have noticed anything different with Matthew and I told her that in the past few weeks Matthew has started sweating when he cries. Kelly said it wasn't an emergency, but we should call his cardiologist, Dr. Hasselman, and let him know because he may want to do an echo at his appointment which was scheduled for next week. I called his office yesterday afternoon after Matthew had a couple more of the sweating episodes. Dr. Hasselman decided that he wanted to see Matthew this morning.

After examining him this morning Dr. Hasselman told us that he thinks Matthew is out growing his shunt and we need to start the scheduling process for surgery #2. Matthew's coloring looked better to us so we told Dr. Hasselman that he was making a liar out of us today. He laughed and said that we have been around Matthew too long and have gotten use to his blue cast because he was very blue today (you can see what we mean by "blue" in the above picture when you compare him to Taylor). His oxygen saturation seems to be falling into the 60's on a regular basis and that contributes to his coloring.

The plan is for the cardiologist office to call us Monday with a scheduled date for his heart catheterization (2 weeks out) and after the results of the heart cath are reviewed by the surgeon, we will schedule surgery. We're expecting surgery to be the middle of March or possibly sooner. We knew this was coming, but it makes our hearts sink to know that we are starting the process. We know that he needs this done sooner rather than later, but we are really enjoying our time with him at home now. Pray for our strength, it is going to be so hard to hand Matthew over on the day of surgery and sit back and wait several hours to see him again. His poor little chest will be cut right down the center of his existing scar and then there's the scary "tweaking" stage where they constantly adjust his meds for hours trying to make him stable.

We will update you Monday as to the date and time of his heart catheterization. Thank you all so much for your continued prayers. It is wonderful to know that prayers are being sent up on Matthew's behalf. God has been so good to us this far and we know that no matter what God is in control.
Love, Amy

Matthew Has Something To Say.....

"I feel pretty good tonight and guess what....I didn't catch my Mommy's or my sister's cold and I'm pretty happy about that...and they finally let me out of my room....now, if only I could go poo a little more often"

Family Concerns...

Some of you may know that Amy's sister Kim had a little girl about 1 week after Matthew was born. Her little girl has developed some respiratory problems over the past 2 weeks and after visiting her family doctor and an ear, nose & throat doctor it has been determined that she has a mild case of Stridor which is a symptom associated with some form of airway obstruction. She is having tests done next Friday to determine the cause and extent of the obstruction.

Also extremely concerning is that both the family doctor and ENT stated that her little girl has symptoms consistent with Coarctation of the Aorta (Matthew has) or Patent Ductus Arteriosus (Matthew does not have). Both of these are forms of congenital heart disease. They've scheduled an echocardiogram for her heart on Monday and will hopefully rule out any form of heart disease.

As you can expect this is very scary for the entire family considering everything we've gone through with Matthew. Please keep Kim and her daughter Alyssa in your prayers.

Home Again...

We're happy to say that Matthew got to come home this afternoon. The new game plan is smaller, more frequent meals along with some increased medication to reduce the severity of his reflux. We were probably overfeeding him a little before this last trip to the hospital which contributed to his reflux problem. They had us so scared about "heart babies" not gaining weight that we might as well have put a funnel in his mouth before.

Hopefully a little better communication between us, his pediatrician and the pediatric nutrition specialist at the hospital will help us stay on track this time and keep him out of the hospital until his second surgery. He's still not a happy pooper so his Doctors also switched up his laxative to get things moving.

Otherwise, Matthew seems a lot happier now that his throat has healed and he's eating again. Amy is feeling a little better today and is happy to back to her favorite leisure activity...talking on the phone and holding her baby boy.

p.s. This picture will probably be removed after Amy sees it.

A Mother's Love....

This hospital stay has been harder on Matthew's Mom than usual. Please keep Amy in your prayers today.

Entertainment...

Matthew was given some entertainment today. His nurse rigged (lots of tape) up a mobile to give him something to look at while he was awake. Nothing has changed from yesterday. He's pretty fussy since his food is going into his intestines (TPT line) instead of his stomach. We're still hoping he'll get to come home early next week.

More Smiles....

We just wanted to share Matthew's smiley face with you. Have a great day.

Kite Flying...

We spent some time enjoying the unseasonably warm weather this weekend letting Taylor fly her kite in the muddy and soggy field behind our house. Taylor decided to let go a couple of times so we were a mess by the time we were done. Still, it was just nice to get out of the house for a while.

By the way, Matthew had his 2 month check up today and is doing very well. He's up to 10 pounds now which is exciting because he actually made the chart in the 15th percentile. He's just starting to gain weight so we expect this to continue to improve. His length is in the 75th percentile so no concerns there. All other developmental milestones are being met right on time. Thank you God!

Swinging Into The New Year . . .

Happy New Year! I can hardly believe that it's 2008. Last year went by so quickly with my pregnancy and everything that Matthew has gone through. We are doing great. Matthew loves to swing and that's my time to get things done around the house. Thankfully, he's no longer having the screaming episodes. Matthew is a bit on the fussy side, but consolable which gives us time to relax a little more. We're adjusting to his medicine schedule and starting to develop a routine. We met with his cardiologist on Monday and he said everything looks great. Matthew had an echocardiogram which showed the shunt is still functioning properly and his oxygen saturation is where it should be.

By the way, Matthew has grown 3 and half inches in length and is up to 9 lbs 8 oz. Yeah!! It looks like we're going to have a tall boy.

We're fighting colds and sinus infections in our house and praying Matthew doesn't catch them. I've been wearing a surgical mask most of the time and Matthew stares at me like I'm crazy.

We wish all of you a wonderful Happy New Year from the Orwig house.