Matthew is Home!!!!

So this is the post I have been looking forward to since the day Matthew was born. After 58 days in the NICU Matthew is home.

 Here is a little about how it all happened. Yesterday morning Jim was up doing Matt's 9:00am feed and the Doctor came in and told him the plan was for Matt to go home tomorrow. (Thursday Dec. 22nd) So I frantically got bags packed for myself made arrangements for Finn to stay at the grandparents for two night and also found grandparents to watch the dogs too. I managed to get everything done and get to the hospital at about 12:30pm. I had to keep reminding all the nurses to ask the Dr if there was still a final Echocardiogram that need done. Sure enough there was so he had his echo done at about 3pm. Then we got to spend the rest of the day waiting for the on-call pediatric surgeon to come change his feeding tube to his button and pull his broviac (central line) out. She arrived at about 7pm to do that, and then we spent the rest of the evening in a private room in the NICU. We roomed in with no monitors to watch. I did not sleep very well at all, but that is why we decided to room in. Matt did really well and slept most of the night. I guess having a feeding tube can be a positive thing, when you don't have to disturb the baby to eat. This morning the Doctor came in and checked on Matt then we started the discharge process. We officially left the hospital at 12:30pm. Since we have been home things have gone great. It is just myself, Jim and Matt right now. We thought we needed a little break in time. So no dogs, big brother, or visitors today. It has actually been a nice change from the crazy life we have been living.

Now that we have Matt home my life will be extremely busy with LOTS of Doctor appointments and just having a 2 year old and an infant. I am looking forward to every minute of it.

I will try to keep you all updated as I have time, but there are no promises on that.
Thank you for all your thoughts and prayers we ask that you continue to keep us in your thoughts and prayers. We have made it a long way, but we still have a long way to go.

Jaime

What drugs???

This last week we have been going in every three hours to help with Matt's feeds. He was getting a little restless and agitated about 30 minutes before and after each feed, so the Doctor asked us if we could have someone there for his feeds. We managed to make most of his feeds. The only ones we didn't have someone there for were the midnight and the 3 am feeds. I think that is pretty good considering we had to cover every three hours. During those feeds Matt was still getting his morphine and phenobarbitol. Well today I am happy to announce that he is no longer getting morphine and he received his last dose of phenobarb at his noon feeding. YAY!!!! This is a huge step for him. This coming week he should be getting his permanent feeding tube "button" and also getting his central line (broviac) out. This is another HUGE step forward. 

I also believe they are going to do one last echocardiogram to make sure things still look as good as they did about a week and a half ago. They are also talking about doing a swallow study. They will have him swallow some barrium and then watch it with a flouoscope. This will let them know if he can tolerate feeds orally. If he can then I think they will try little amounts to see how he responds. They will not require him to be feeding orally to come home. He will be getting most of his feeds through his G-tube still. 

Now the next big step he needs to be able to come home is get off of the high flow nasal cannula. They have lowered his flow on the high flow form 4 liters to 2 liters. Hopefully this week they will try him on a standard cannula. If everything goes well with that, then maybe...just maybe we can hear the words we have been waiting 54 days for... 

We just ask that you continue to keep us in your thoughts and prayers.

Jaime

Update

Matthew update:

Matthew has just been kind of riding the wave for a few days now. On Tuesday of this week the Dr noticed his breathing has become a little more labored. They started doing all kinds of tests. Blood tests, x-rays, echocardiograms, ultrasounds, and more x-rays. They blood tests and x-rays all have come out being ok. There was one day his blood work came back a tiny bit abnormal. The echo actually came back and it looked really good. Better then his previous one after his last surgery. But the cardiologist did see some fluid around his lungs in his plural space. So that is where the ultrasound and more x-rays come in. He had those done yesterday. We talked to the Dr yesterday and she said he could possible have pneumonia again or something called a chylothorax. This is a condition where you have a lymphactic fluid leaking into your chest. This is not a good thing. This was a very worrisome thought. Well today we talked to the Dr again and they could not find a leak anywhere and they have completely ruled out the chylothorax and pneumonia. YAY!!!!

We know about how negatively a chylothorax can affect you because there is a little girl who was born two weeks before Matthew with undiagnosed CDH with heart problems as well. She had multiple surgeries, a couple of the same ones Matt has had. They think during one of her surgeries that something was nicked and caused the chylothorax. She has been leaking fluid into her chest for weeks now, they put chest tubes in and tried different medications. Today she lost her battle with CDH. It was very hard to hear this. We have become pretty close with the parents in the 6 1/2 weeks we have been in the NICU. Just knowing that she had some of the same things as Matthew just makes it that much harder to take. Little Elizabeth fought hard and was a very strong little girl. Her parents were at her side all the time. They have 9 other children as well and were with her as much as possible. They got to hold her until the end. RIP Elizabeth, you are in a better place where you will not have to endure anymore pain.

So with that said we are extremely greatful that there was not a chylothorax found. The Dr's have said they are quite certain his breathing and all of that is from withdrawls. They are SLOWLY weening Matthew off of morphine and phenobarbitol. He has had slight fevers and sweats a lot. Poor little guy. I just wish I could take some of the discomfort from him. He has been through so much in his short little life, but he is still on the right track. So we just keep praying for him to get better so that he can come home.

That is all the update information I have for now.

Jaime

On the right track

It looks like Matthew is on the right track. He has done amazingly well this last week. He has recovered from his surgery with flying colors. He is being weened off of his morphine slowly. He has become a little addicted to it and is having some withdrawls. They will ween him slowly so they shouldn't be too bad. They are also weening him of his high flow oxygen. Then he will just be on regular oxygen. He can come home n regular oxygen. He is very alert most of the time we go up there. The nurses say he is awake most of the day. He slept last night so I guess that is a good thing. He is getting tired of just laying in a bed, so they have put him in a swing and in a bouncy seat. He likes them both. He also loves to look at his mobile above his crib. We brought it in for him. I am sure the nurses are tired of the one and only song it plays. His feeds are starting to go a little better. They have started to give him 20cc's of milk and are only getting a little bit of residual back. They feed him through a feeding tube that was placed in his stomach during his last surgery. Once they get his stomach to empty and ween him off the morphine and high flow oxygen then he can come home. Jim and I are hoping that is before Christmas. One of his nurses today said she is going to be gone foe two weeks and she is afraid Matthew will be gone before she gets back. I sure hope she is right. We have been able to hold Matthew everyday since last Monday. We can go and take him out of his bed anytime we want and hold him as long as we want. It is so nice to be to that point with him. It was heart breaking to not be able to hold him for the first 26 days of his life. He loves to be held and rocked too. The nurses and respiratory therapists take turns holding and rocking him. He has a big boy cry that makes them all want to hold him. They are so used to the tiny pre term baby cry, that a big boy cry gets their attention. He is in good hands where he is at and everyone thinks he is just too cute. I would have to agree with them. :)

 I will keep you updated on the possibility of bringing Matthew home. We can just hope and pray that it is soon. However as much as I want him home, it will be a little scary. He will for sure be coming home on oxygen and also with a feeding tube. He might be coming home with his broviac IV as well. (central line in his chest) He could need extra IV nutrition on top of the milk that gets fed through the feeding tube. So with all of that it will be a lot more work then just bringing a healthy baby home. But hey I will take it.

That is all the information I have for now.
Jaime