2 New Amazing Reports . . .

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 . . .

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 . . .

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 . . .

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 . . .

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 . . .

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 . . .

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.