Here We Go...

We're leaving for the hospital and just jumped on here to read a few encouraging comments and emails before we leave. Please keep them coming. This feeling of taking our 3-month little boy in for open heart surgery is overwhelming. Thank for your prayers today. We love you.

Craig & 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.

Update...

Matthew just finished his first bottle of the day and is resting comfortably this afternoon. His heart catheterization provided some pretty positive news today. After taking a closer look it appears that the narrowing of his pulmonary artery and aorta that they saw on his echocardiogram on Monday is very minimal and no balloon dilation or surgery will be required for either one. The heart cath also showed that Matthew's lung pressures are low enough that his Doctors believe he is capable of handling his Stage 2 surgery instead of repeating the first surgery with a larger shunt.

The heart cath provided some very clear pictures showing the narrowing of Matthew's shunt right where it attaches to his pulmonary artery. The narrowing is due to a build up of scar tissue from the first surgery. This explains why his oxygen saturation declined so much so quickly. There appears to be a general consensus that waiting for the surgery is not an option and it needs to happen this Thursday, but at the same time it's clear that there is some concern over doing the Stage 2 at such a young age and they aren't doing a very good job of hiding it. We were told by one of his Cardiologists to prepare for a 2-3 week stay after the surgery instead of the typical 7 day stay for typical Stage 2 surgeries.

Scratch that....we were just told they are going to do the surgery tomorrow. We'll explain more later.

Catheterization Tomorrow - Surgery Thursday

Well, it looks like we have a very scary stretch of days ahead of us. As we suspected, Matthew was admitted into the PICU this afternoon. When we arrived at the cardiologists office Matthew oxygen saturation was back up into the 70's. The cardiologist decided to go ahead and order an echocardiogram to see if there were any emergent issues that needed to be addressed before the heart catheterization tomorrow. The echo gave us some disappointing news. Apparently, the shunt that was placed during his first surgery has narrowed from 3.5 millimeters to 2.8 millimeters. This could be do to a number of different things that we don't understand. It also showed that Matthew's left pulmonary artery is more narrow than his right and his aorta is starting to become narrow again.

The new objective with the heart catheterization tomorrow will be to take measurements for Matthew's next surgery and possibly use a balloon to stretch out the narrowing that is occurring in the left pulmonary artery and aorta. The cardiologist will now be performing the heart cath with Matthew's heart surgeon present (this wasn't the plan originally) and they told us they are going to keep on open mind tomorrow because they really don't know what to expect.

They did tell us that Matthew will not be going home after the heart cath now and will more than likely undergo his next open heart surgery this Thursday. What they don't know at this point is will they be able to do the Stage 2 surgery or will they need to push the Stage 2 back a few months and repeat the first surgery instead.

I almost feel numb as I type this email. We just can't believe this is happening already or that there may be new issues that need to be addressed when he has his next surgery. Please continue to keep Matthew in your prayers.

Going In...

Matthew's oxygen saturation briefly dropped into the 40's last night and again this morning. Amy just called his cardiologist who said to bring him in. They will probably go ahead and admit him today and keep the heart catheterization scheduled for 8 am tomorrow. We'll update you as we know more later today.

More Concerns...

Matthew's voice started getting a little raspy last night so Amy had to take him back to the Pediatrician for a checkup today. He has an infection in his throat that is causing him to have laryngitis. This can cause problems when he's placed on the ventilator during his heart catheterization on Tuesday so they'll be watching him very closely.

He's Pediatrician also noticed that Matthew's liver is enlarged. Amy's heart sank when she said this because we've known for a while that this is one of the first signs of congestive heart failure. Matthew's pediatrician thought that he should be admitted today but his cardiologist said we could keep him home since he's going in for the heart catheterization on Tuesday. We don't know for sure, but it appears that we're not going to get that extra 3-4 weeks before his next surgery that we've been hoping for. We are still praying that the pressure in his lungs is at an acceptable level where they can still perform the stage 2 surgery instead of repeated stage 1 but it's not likely. This is happening too fast. Please keep praying for our Matthew.

Prayer Requests . . .

I wanted to add some detail to Craig's email since I know so many of you like to pray specifically. Our prayer for Tuesday is that Matthew's pulmonary artery has grown properly and has not narrowed. This is apparently one of our cardiologist's concerns and is important for Stage 2 surgery. Our other prayer is that the coarctaction of his aorta has not returned and that blood is flowing well through his aorta. Our last request is that his heart is having good cardiac output with the low saturations and that the pressure in his lungs is down (required for Stage 2) so that we can hold off a few more weeks for the stage 2 surgery. We are very nervous about the possibility of repeating the first stage surgery with a larger shunt. God has given us a fighter and with our prayers we believe that Matthew will fight through this too.

On a second note, my sister's baby, Alyssa has finally made it home after an 11 day hospital stay. She is still receiving breathing treatments and is on multiple medications, but she is doing so much better. She has appointments on Friday and Tuesday to be rechecked and our prayer is that her lungs are healing and there will be no more episodes causing her lung to collapse. Thanks for all of your prayers for them we know they helped.

I can't thank you enough for all of the prayers, support and love we have received. All of you have played a special part in Matthew's life and we will never forget it. I also want to thank my husband for being such a strong person for me to lean on. He is such a huge help around the house and jumps right in helping with the kids after he has put in a long day at work. I couldn't survive all of this with out his help and the emotional support he provides me.

By the way, Matthew's saturations have been more stable yesterday and today. Thank GOD!!! We are having Matthew dedicated at church this Sunday. We are so excited to have this done. Matthew has truly been our miracle from God. This will be our first outing other than doctor's appointments and we are looking forward to it. We will add some pictures of his dedication on Sunday.

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.

Concerns...

Matthew's oxygen saturation has been dropping over the past several days and has dipped into the mid 50's several times over the last 18 hours. Amy has been on the phone with the cardiologist office several times today, but the cardiologist isn't in and the nurse she has been talking to seems to think it's probably just the pulse ox machine acting up. We're not convinced of that so Amy is taking him into the office this afternoon just to use their pulse ox machine and see if he really is dipping into the 50's.

We don't know what they'll do if the office measurement confirms his saturation level is in the 50's. We're guessing that they'll admit him and do the heart catheterization in the next few days. It's times like this that are so scary because we don't know the right thing to do. Do we go with the nurses hunch that it's the machine or do we push back a little and say we need a better answer? We're going to try for a better answer.

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

Thank You...

Hi Everybody,

We're sorry we haven't been updating as much lately. This time it isn't because things have been crazy, it's because things have been going so amazingly well. As we mentioned before, Matthew gets to skip his next appointment with his heart surgeon because he's doing so well. He's actually slept all night a few times now and when he doesn't he usually just takes a quick bottle and goes back to sleep. No more inconsolable crying fits. He still fusses 4 or 5 times each night (Dad usually doesn't notice) but will usually go right back to sleep once we help him find his pacifier. At his last appointments his Doctors briefly toyed with the idea of taking him off of one of his blood pressure medications. In the end they decided not to take any chances but just being at a point where reducing meds is being discussed feels like a blessing.

Amy just finished her third round of antibiotics for a lingering sinus infection and is finally feeling better. Taylor is just starting round two of antibiotics for the same thing. Some how (by the grace of God) Matthew has managed to stay cold free this winter. We believe wholeheartedly that this is because of the faithful prayers everyone has been sending up for us. We're especially grateful for our church family at Richland. We haven't had an opportunity to thank you for the meals, gift certificates, cards, reading material and many prayers, but it hasn't gone unnoticed and we will be eternally grateful.

As March approaches we're getting more and more nervous about Matthew's next surgery. Although we've loved him from day one, now that he's feeling better we're able to witness his personality and we're getting more and more attached to this very smiley baby boy. He loves to be talked to and rubbed...pretty much any attention we're willing to give him he's happy to accept.

Please continue to keep Matthew and our whole family in your prayers. We're taking one precious day at a time and we're trying not to look too far down the road although we still know what is just around the corner.

Love, Craig & Amy

P.S.
By the way, we've heard from a few different people that they have considered putting comments on our blog but haven't for one reason or another. Please do. The encouraging comments and helpful suggestions have been great and we can't wait to read the next one.

Enjoying His Cereal . . .

Matthew just started cereal this week as a recommendation from his pediatrician (Dr. Christison) to help with his reflux. He is doing great and loves it more than his bottles.

We had appointments with his surgeon and cardiologist last week and left with wonderful reports. Matthew is gaining weight and has reached the 11 lb mark so he's now in the 25th percentile. He is doing so well that the heart surgeon asked told us we could skip the next appointment and just meet again at the end of the month. We'll still meet with his cardiologist again in 2 weeks. This is exciting but scary because we are so use to seeing a doctor every week.

Matthew's saturation levels are starting to take a downward trend which is typical at this point. This tells us that Matthew is on pace to be ready for his 2nd stage surgery sometime in March. At his next appointment we will discuss the scheduling of his heart catheterization. His cardiologist will use the catheterization to determine when to schedule surgery. We are nervous yet ready to keep moving forward because we know that he needs the next stage in order to be more stable. God has really blessed us and has answered a lot of prayers with his heart being so strong. His surgeon said that if all goes well, Matthew's hospital stay will be 5-7 days. This is truely amazing.

Also, please pray for my sister, Kim and niece, Alyssa. They received news today that Alyssa's echocardiogram showed a heart defect called Patent Foramen Ovale. She will see a cardiologist within the next few weeks. It is our understanding that this is a very common defect and can be left alone or fixed by heart catherazation instead of open heart surgery (depending on the severity). We have no idea if her airway obstruction is related to this defect. This is scary for our family as we have been through so much in the past several months so please pray for our strength and that her defect is easily fixable.

Thanks for all your support. I will add more pictures later (due to several requests).

Love, Amy

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.

Finally Eating...

Matthew finally got to eat today. He's getting roughly 3 ounces of food every 3 hours, but it's being thickened with a calorie free thickener so he's only getting about 2.5 ounces of actual food. His Doctors want him to be fed in smaller, more frequent amounts to reduce his reflux. Hopefully he'll still be able to gain weight at this pace. There has been a lot of discussion of more tests the past few days and no talk of when he'll get to go home so we don't know what the game plan is at this point. We wouldn't be surprised if they told us Matthew was going home tomorrow and we wouldn't be surprised if they said they were going to keep him for another week to run tests.

Amy is still feeling pretty miserable. She's on her second round of antibiotics for what was originally diagnosed as a sinus infection. We're now wondering if it's some sort of viral infection instead. Either way she just isn't able to get the rest she needs to get over it because she spends so much time at the hospital.

Amy's Dad was admitted to the hospital last night with chest pains. Thankfully his stress test came back ok so they sent him home today. There was some joking about letting him share a room with Matthew, but the hospital wouldn't allow it without the right coupon.

Quiet Day . . .

Matthew is doing well. He cries a lot due to being hungry but that's expected. His nurse tried to talk the doctors into letting him eat today but they said No without hesitation. They called in an extra nursing tech last night just to rock Matthew. Apparently, his surgeon didn't like how much Matthew was crying so they had to get back up support to rock him. They can thank me for spoiling him with the rocking. It was the only way I was able to get some sleep for many nights. Oh well, that's what mothers do!!

I've come down with a sinus infection again for the 3rd time. I know that I'm not getting the rest I need so I can't seem to fight it off. I stayed home all morning but couldn't take it anymore and had to go see him. Please pray that Matthew doesn't catch any of our colds. The plan is to slowly start feeding on Monday morning and see how he does.

The little girl (Laynie) that we spoke of earlier this week is still in critical condition. I spoke with her Mom and Dad this afternoon (a very sweet couple) and found out she is fighting a bad infection which is causing problems with her heart healing from surgery. This was her second stage surgery and it looks like she may be in the hospital for another 4-6 weeks. This scares us as Matthew's heart condition is almost identical to hers. Her Mom and Dad were upbeat for everything they are going through. They said they are leaning on God right now. Please keep them in your prayers as well.

We will update on Monday and let you know how the feedings are going. Our prayer is that he remembers how to suck as this was an issue on our last visit.

Thanks for all your prayers and support.

Love, Amy

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.

Esophagitis...

Matthew has been officially diagnosed with Esophagitis which means he has a raw and inflamed throat and stomach caused by the reflux. Unfortunately what we were hoping would be a 2 day stay in the hospital will now be a one week stay. He will not be allowed to take a bottle until Monday and then they'll ease him back into eating to see if the reflux kicks back in. They will keep the feeding tube in his intestine (TPT line) so he'll continue to get nutrients, but his belly won't be getting fed and he'll think he's hungry.

They took Matthew back off the Zantac he was just prescribed on Tuesday and they decided to double his Prevacid dosage instead. We had a lot of questions when we heard this because we've been told for the past 4 weeks that Matthew was already on his max dosage. Apparently after consulting with the hospital pharmacist his doctors decided they could double his dosage for a short period of time to get the acid under control. However, they're going to start monitoring his liver function because high doses of Prevacid over an extended period of time can cause liver damage. We don't know what the right thing is so we're going to trust his Doctors and pray that this is the right move for him.

Things continue to be frantic in the PICU. There is still a flurry of active around the little girl we wrote about yesterday but she does seem to be a little more stable today. We also met a mom who told us about sliding on black ice and getting into an accident with her 2 young children in her car. The little boy and girl are both in the PICU with serious injuries. We get tears in our eyes just walking down the hall now.

Resting and Waiting. . .

The doctors have decided to rest Matthew's stomach and esophagus for the rest of tonight and inserted a feeding tube directly into his small intestine (called a TPT line). They believe that Matthew's reflux has made his esophagus raw and very sore so they're giving him a medication called Sucralfate that will coat his mucous membranes and sores and provide an additional protective barrier against his stomach acid. Hopefully allowing his throat some time to heal and continuing use of Sucralfate will be all it takes to get him back on track and get him eating again. If not, they'll start more tests. Thankfully he looks good otherwise and they've decided not to start an IV or do blood work at this time. His oxygen saturation has been all over the place due to his discomfort.

We had a bit of a scare this afternoon. When they inserted the feeding tube they took an x-ray that looked as if his stomach was on the wrong side of his body. They took the tube out and reinserted it and the next x-ray looked normal (with one spot being questionable). They will reevaluate this in the morning and decide if he needs further testing. They may call in a Gastroenterologist depending on how he tolerates eating over the next 24 hours.

Please pray for another little girl with the same heart condition as Matthew. Little Laynie had her 2nd surgery last week and is struggling. Her surgeon and pediatric intensivist have been in her room working on her since 2:00 pm and they were still in there when we left at 8:30 tonight. Our hearts sank every time we passed her room and could see the concerned look on everyones faces faces. Being in the PICU is helping us put life in perspective. Everyday we see dozens of children fighting for their lives. It is so easy to take life for granted and forget how precious life really is and what a blessing it is to wake up healthy every morning.

Thank you for your prayers. We will update again as we know more tomorrow.

Love, Craig & Amy

Here We Go Again....

Matthew was readmitted to the hospital today. He now has a feeding tube inserted through his nose. We haven't talked to his surgeon yet so we don't know what the game plan is going to be. We know they are going to run some more tests. Hopefully this will be as simple as letting the Zantac kick in to get things under control but we just don't know what to expect at this point.

I know we say this a lot, but please continue to keep Matthew in your prayers.

Love,
Craig & Amy