ScrumpyDaddy

Thanks to all who have been praying for Matt. He is doing well, though we still have some obstacles to overcome. The big issue right now is his feedings. He started to try to bottle feed, but he was choking on the milk and it was squirting out of his nose. They had Matt go for what is called a cookie swallow, which is also called a barium swallow. They then watched the barium to see if the milk went to his belly or anywhere else. They found that Matt was aspirating, which means milk was getting into his lungs. This is potentially very dangerous as it can lead to pneumonia. Since this was the result of the cookie swallow, Matt can no longer have milk by mouth via a bottle.

Matt will now have his feeds by a feeding tube that goes through his mouth. They are also going to extend the feeding to be over an hour instead of a quick feed. This will hopefully help him not to spit up as much. They were concerned that if he is spitting up he would also aspirate that. So far today when we left, he had 2 feeds at 12 and 3 that were 20mL by feeding tube and each feed was over an hour. He did really well with these feeds and wasn’t spitting up. They also have him on Prevacid to help with any reflux issues he may have that could cause him to spit up. When we left tonight, since he did so well with his other feeds, they are upping his feeds to be 25mL every 3 hours. Until he gets his feeds back up to where they need to be he will also be on IV fluids to make sure he stays hydrated.

After he has his stents removed next Friday they will have another cookie swallow performed to re-evaluate his feeding ability. Due to this Matt will definitely be in the NICU for at least another 2 weeks as they need to wait for the stents to be removed, perform the cookie swallow, and then watch his feedings for at least a week to make sure he is eating well and continuing to gain weight.

Also, we got the results of the MRI and EEG the other day and they both came back normal. So far the only issue with Matt was his nose and now his feeding, which may be due to the stents in his nose. We will see after the stents are removed.

Daddy got to hold Matt for the first time today. Matt was very happy with this and so was Daddy.

Today they started “feeds” with Matt. They started giving Matt the breast milk I have been pumping via a bottle. They are starting with 10mL every 3 hours. His first feeding today went wonderful. He was wide awake this morning at 9 for his feeding, which made it better. Though, the only problem he was having was that milk kept coming out his nose. We think because the stents are there they are holding parts of his nose too open that when he tries to eat sometimes it goes in his nose instead of down his throat. We discussed this with the nurse and doctors as we weren’t sure if we should do a feeding tube instead until the stents come out and we are just going to continue to try the bottle and expect this will just be something he will need to learn how to work around. The next feeding he had at noon, which Dave started to try and give to him. They want to start having us do more of his care since we will be the most consistent people giving him care. The noon feeding didn’t go as well because he had been sleeping and we had to wake him to feed. He was never fully awake so it took more work to get him to eat. Then I tried to do his 3pm feeding, which again only went ok. He was still a little sleepy for this and just didn’t feel like sucking. I can’t wait to try again tomorrow.

Here is Matt in the first NICU at the hospital where he was born before he was transported to Children’s Hospital.

Transporting Matt to Children’s NICU.

Matt at Children’s NICU.

Here is Matt getting his EEG.

After Matt’s surgery to have his nasal passages unblocked. He now has stents in his nose to help his nose heal and help him breathe while it is healing.

Abby and Zach came to visit Matt. Abby came Friday night, Saturday, and Sunday. Zach only came Friday and Sunday. Abby was very excited to see Matt yesterday without his breathing tube.

Matt without his breathing tube.

Mommy got to hold Matt for the first time yesterday for about a half an hour.

There has been many things that have happened with Matt in the past couple days since we posted. We have been posting updates on Facebook for those of you who are friends with us, but we wanted to do another blog update for those of you who are not on Facebook.

Surgery:

Matt had his surgery at 3pm on 10/13 to open his blocked nasal passages. The surgery went very well, though it took longer than they anticipated. They took Matt down a little after 3 to the OR and he didn’t come back up for several hours. They did keep sending someone up to inform me of where they were in the surgery. I received and update when the surgeon began the 2nd side and then again when the surgeon decided to make the openings bigger than he originally did.  The surgeon had to open his nasal passages more than he initially thought in order for the stents to fit properly. Matt will have the stents in for 2 weeks to make sure everything drains properly while the opened passages heal. He has a followup appointment in 2 weeks to have the stents removed.

MRI:

After Matt was finished with his surgery they took him for an MRI of his brain. They are concerned due to his head being small and want to check his brain function. We have not received the results of the MRI and most likely will not receive them until Monday.

EEG:

Matt also had a EEG yesterday, 10/14 to check his brain function as well. They put sensors all over his head and had it watch his brain waves for an hour. Again, we don’t have the results of this test yet either and will not have is until Monday at the earliest.

Bowel Biopsy:

In Matt’s first 24 hours of life he was having problems with his bowels. His belly was swollen and he was not having any bowel movements. Obviously, this concerned the doctors as with newborns they need to pass meconium in order not to become jaundice. Normally they are able to do this with the food they receiving from nursing. In order to check his bowel functions they performed a barium enema to make sure they were functioning the way they should. As soon as they gave him this he had a bowel movement and then continued to have them. He then had 6 bowel movements in 24 hours. The doctors were very encouraged by this, but they still wanted to be absolutely sure everything was working well so they did a bowel biopsy. For the biopsy they take a small piece of tissue to test for what is called Hirschsprung’s disease. They performed the biopsy yesterday and today we received the results, which were negative. His bowels are fine and functioning the way they should. This means now he can starts feeds. He would be given small amounts of the breast milk I have been pumping through a feeding tube. They planned to start this today, but were unable to. They now plan to start the feeds tomorrow. We will see how it goes.

Removal of Breathing Tube:

Since Matt was done with his surgery they have been talking about removing his breathing tube. Since arriving at Children’s they have had him on the lowest settings for the breathing tube. He has been on room air with the respirator just providing backup and pressure when needed. They were going to remove it yesterday, but were unable to do so since he was still too sleepy from all the sedation he had the previous day for the surgery and MRI. They then stated in rounds this morning they would remove the breathing tube today. All day long I waited for them to remove the tube. We really wanted one of us to be there to see how he did. Unfortunately, they had a new patient come in today, which was taking most of the time of the nurses and doctors to get that patient in and settled. My in-laws and Abby came in to visit Matt this afternoon after Abby’s soccer game and the tube was still in. We left the hospital to get Abby home and give her and Zach dinner about 4:30pm. After the kids were in bed we called for an update and they notified us they took the breathing tube out at 5pm. We just missed it. Ugh! Anyways…they said he is doing great. He is breathing room air with no support and is very comfortable. Hopefully he will have a great night of breathing on his own and they won’t have to put the tube back in for the rest of his stay.

Other items going on:

They are running genetic testing on him to try and find a cause for why he was so small when he was a 39 1/2 week baby when he was delivered. I personally don’t really like the genetic doctors that I have seen there. They really aren’t conveying well exactly what they are doing and possibly looking for. They aren’t as personal as the other doctors either and are very clinical. This comes off as blaming the parents since it was a combination of our genetics that created this child. They also did not like my answer that I didn’t have the genetic testing done during my pregnancy, which they didn’t state, but I could see it on their faces. Hopefully it will get clearer when they have the results of all the blood work they have sent out as to what they are looking for and what that means. Not really sure when those results will be in though since it takes time to read and compare all the chromosomes of the body.

We can’t wait to see him tomorrow now that the breathing tube is out. We will really get to see his face. They also bathed him tonight so he is all cleaned up from his surgery. We plan to post some pictures of him tomorrow on the blog if we get the time to get the pictures off the camera.

Thanks to everyone for all the love, support, and prayers.