Matthew update:

A quick update on Matthew:

He has made a big improvement from two weeks ago. He is still not out of the woods, but he is doing much better then he was.

Two weeks ago they had to put him on a different ventilator to help him breath easier. They were able to take it off and he has just been on the original vent for about a week now. They did change out his ventilator cannula to a "new" one. (It has been around for years, but they have changed they way it works and operates now).
It is responds to neuro receptors instead of diaphragm receptors and makes it a lot more comfortable for him. The respiratory therapists say he likes it better and is more comfortable.

As you all probably already know I was able to hold Matthew for the first time on Sunday night. He was 26 days old. It was the best feeling in the world. I was able to hold him for about an hour. He just sank into my chest and fell into a deep sleep. The nurses said they had never seen him so relaxed before. They only thing that would have made it better is if Jim could have held him too. He still has not held him. It was a huge production to get him and all of his wires and tubes moved so I could hold him.

He is doing much better then he was, but he is still not out of the woods. They have not been able to feed him anything for about 3 weeks. He has a very enlarged esophagus and refluxes very bad. He ended up with pneumonia because of this. That was one of the reasons he had such a bad week two weeks ago. So the Doctors say that this can not happen again. So they have not fed him anything but IV fluids. With that they feel he needs another surgery. This surgery is called a fundoplication, it is simply them taking the top part of the stomach and wrapping it around the esophagus and stitching it around it. This will not allow anything from the stomach to come back up. Yes, that does mean he will not be able to vomit. One of the side effects of this procedure. We are not sure when this surgery will take place. Possibly as early as Saturday this week. But more then likely it will be Monday. We are not looking forward to another surgery, but it is necessary to get Matt moving in the right direction. He needs to be able to eat to grow and get stronger so he can be closer to coming home. The doctors still have not even tried to guess when Matt could possibly come home. Our best guess is at least another 4-6 weeks. That is with 2 weeks for recovery and then 2 weeks for getting stronger and getting feedings where they want them and then 2 more weeks to ween everything off they need to ween.
So as you can see we still have a long road ahead of us.

I guess that wasn't really a quick update, but an update none the less. Thank you all for your continues support. We couldn't do this without it.

Love,
Jaime

Thankful!!

On this Thanksgiving day I have so much to be thankful for. First off I am Thankful for my wonderful husband that is my best friend and he would do anything for his family. I love you Jim. I am thankful for my boys, both are such miracles in our life. I don't know what I would do with out them. I am thankful for all the hospital staff that is taking care of Matthew. I am thankful that Matthew is doing better then last week. I am extremely thankful that I got to hold Matthew last Sunday for an hour. I am thankful for all of the support we have received from family and friends during all of this. I am most thankful for the faith that I have in just knowing that little Matthew will be OK and home in our arms soon.

This Thanksgiving day Finn and I are going to Jim's parents house for dinner, then later to go to the festival of trees. Put on by the hospital where Matthew is at. It is a bunch of decorated trees and Finn loves lights so I think he will do ok with it. I will be able to go spend a couple hours with Matt this afternoon while Finn sleeps at the grandparents.

Jim made a trip down to Salt Lake for business. The first trip he has taken in over 6 weeks. It was REALLY hard for him to leave, but he knew it was necessary.  Matthew is holding his own so Jim could go without too many worries.

Finn is just being a sweet boy and has been doing great with all of this chaos that has been going on for a month now. He has his moments of fits, but he is 2. Other then that he has been doing amazing with all of this. So glad he has so many people that love him and are so willing to watch him.

We just want to wish you all a Happy Thanksgiving!

Questions???

I know that some of you have questions that I probably have not answered on here yet, so I thought I would answer some of them.

When does Matthew get to come home- We do not know and neither do the Doctors. The best answer for that one is when he is healthy enough to come home. Which at this point looks like it will be weeks to months.

Have you been able to hold him yet- No, we have not been able to hold our little boy. We were not even allowed to touch him this last weekend. We went about 5 days without touching and barely being able to look at him. He is in a very fragile state right now.  When we do touch him it is just putting his little hand around our fingers. or we can hold is feet and head at the same time and that is pretty much it.

How serious is CDH- CDH is a very serious defect. It not only effects the lungs, but all the other organs and anatomy as well. The lungs are a huge part of it, but so it the bodies whole vasculature system. So Pulmonary hypertension is a huge problem in CDH kids. (PH is basically high blood pressure in the lungs).

Will he live with this the rest of his life- Yes, this is something we will have to deal with his whole life.

He may come home with feeding tubes, on oxygen and on a whole slew of drugs. We just don't know at this point.

I hope this helps a little. There are a bunch of sites that you can go to read up on CDH. They explain the basics of it. Here are a couple links you can go to to find good information.

http://breath-of-hope.blogspot.com/

http://fetus.ucsfmedicalcenter.org/cdh/

http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/congenital-diaphragmatic-hernia-cdh.html

All of these sites will give you a pretty good overview of what CDH is.

As we are learning there is a lot more to it then what all these sites say, but they are good information non the less.

A rough weekend

 I am not sure where to start, so I guess I will start on Thursday of last week.
Matthew was scheduled to have a minor surgery to have a central line placed in his chest on Friday. This is just a more permanent IV site. In order to do this they were going to have to give him some heavy sedation so he was going to have to re intubated. (put back on the vent) Just for the surgery. Well he ended up taking a dive late Thursday night Friday morning. He was put back on the vent and was at 100% oxygen on the vent and his oxygen saturation was dropping. That is not a good thing since he was already at 100%, there is no where to go past 100. So it was really scary watching all of this. The Doctor was equally as worried and was not sure why he was doing what he was doing. So not only were we concerned the Doctors reaction was not helping. So we spent about 3 1/2 days on pins and needles. Then on Monday this week the Doctors changed shifts and another Dr. came in and had new ideas on what they could try. So they did a bunch of  tests on him. (This is a daily thing) They found that he had severe pulmonary hypertension and also pneumonia (which is not good for him). With this diagnosis they were able to start different medications and try to treat each thing a little differently. As of today (Wednesday) he is doing quite a bit better. His o2 needs are down and he is not d-saturating as bad as he was. So we are just hoping that he is going down the right path now. We don't want to get our hopes too high. They say that with these kids (CDH kids) you take one step forward and two steps back. So we just continue to ask for your prayers for our little fighter. All the nurses and Doctors say he is feisty and stubborn. They say that is how they like the babies to be.

I hope I was able to sum up a little about what is going on with enough information, but not too much to confuse everyone. It is hard to try and explain EVERYTHING they are actually doing with him. It would take up 4 pages if I would tell you all that is going on with him. He is on crazy amounts of medication for different things, but that gets really confusing. So I will leave all of that out. If you have more questions or anything feel free to either email or Facebook me. I will try to get back to you when I have a few free minutes. Thank you for all the messages of support that we have received.

Love,
Jaime

Update:

So Matthew has been extubated since Friday morning. He is now on a cpap which is still helping him to breathe, it just does not make him take breaths like the Ventilator did. They started feeding him on a continuous feed, then yesterday they tried to feed him a little ore and to feed him every hour for three hours then wait an hour and continue. Well his feeds did not go so well throughout the night. He threw up everything they gave him. So now this morning they are going to put a different kind of tube to help with this. The Dr. also discovered that is "little" left lung has collapsed so they are working on getting that back inflated. All of this stuff they are doing to him is getting him one step closer to being able to come home. We are FAR from the talk o f getting to bring him home, but it does get him closer.  It has been extremely difficult to leave him every day. Just knowing that he is in great care and that this is what he needs in order to get stronger and be able to come home helps a little.

Thank you for all your continued thoughts and prayers,
We love and appreciate all of you.

Jaime, Jim, Finn and especially Matt

Baby Matthew

This picture was taken before the extubated him the first time. He has since been intubated and extubated again. This is the third time, so hopefully third time is a charm. I need to get better pictures of him extubated. He is even cuter with out tubes in his mouth. He still has a nasal cannula and a feeding tube in. We are keeping our fingers crossed that he does not have to go back on the vent again. They say that he is feisty and stubborn. I wonder where he might get that from? Hmmm??? They say it is a good thing for him though. So I guess I can take credit for that. Haha.... Well that is all for now.
Love,
Jaime

If I only had a brain

I want to start off by apologizing about the looks of the blog. I tried to change it and messed it up in the process and I do not have the brain power to fix it right now. So just bear with me for a few more days possibly weeks and I will get it fixed.

Update on Matthew:
On Tuesday this week they started feeding him little amounts of my milk. It will be a very slow process, since almost all kids with Daiphragmatic hernias have severe reflux. They have weened him off of the morphine that he was on after surgery. Now they just give it to him as needed. Since then he has become a lot more alert. His eyes are open almost every time we go up there. He is just that much cuter with his eyes open. Yesterday (Wednesday) they ex-tubated him. Which means they took him off the ventilator, for a very short time. They did have to in-tubate again though. He was just struggling too hard to breath on his own. They think it could be because he still has quite a bit of fluid from surgery that he needs to pee off. So they are giving him medicine for that now. Once he pees off about a pound they will try again to get him off the vent. Other then not getting off the vent like the Dr's had hoped he is doing great. It is still a very long road that we have, but things are looking really positive.

Sorry I haven't been really on top of posting. My brain just isn't working quite right yet as I am sure you can all imagine.

Thank  you all for you continued thoughts and prayers.
We love you all,
Jaime, Jim, Finn and Matt