Tuesday, December 31, 2013

Christmas Pictures and Videos.

You will see that some of his favorite positions are to have his hands up by his ears or face.  
Heidi caught a little smile. 


Wyatt's first Christmas PJs. Another really cute pose while sleeping on Heidi. 

Christmas PJs. We were amazed that this actually fit. 

Merry Christmas from the Bagleys





Just finished with Wyatt's bath. 




Again, hands up by his face while he eats from his Binky trainer






Heidi is holding the binky and I have the gloves on holding the catheter in his intestine while we change out the ostomy bag. You can see his incision really well in this picture. In the right hand corner of his incision you can see the tube where they are "re-feeding" the stool that comes into his bag back into the distal part of his small intestine.   


sleeping on his elbow with his hands up by his ears. 





I've graduated to the big binky. 


Christmas shoes


Monday, December 23, 2013

Here are some videos.


Bad Day

So this post is a little late. It was a crazy week last week. In the last post I talked about how Wyatt was vomiting green bile looking stuff. They were concerned that maybe his bowel was blocked again, the other possibility was that his intestine was swollen and blocking itself.  The doctors wanted to do another contrast study by injecting this liquid that will show up on x-ray into his intestine back to his stomach and get a picture to see if there was anything stopping the flow.

Wyatt was not happy to be down there. He was screaming as soon as they took him out of his isolete. I actually stood at the head of the table right above Wyatt's head while he held on to each of my index fingers with each of his hands. Thats one of the best ways he soothes himself. The radiologist put a catheter into the opening of his intestine and started injecting the contrast.  With in a few seconds seconds Wyatt stopped crying.  His face was covered but I could tell he was still upset. His body was all tense. I told them that something was wrong and I uncovered his face. His eyes were squeezed shut, and i repeated again that something was wrong and that was when everything started happening. His heart rate started falling and his breathing, everything.  He started turning blue and thats when I stepped back away from the table. The nurses and doctors all rushed in to help him.

He had enough backed up in his intestines that when they injected the contrast it pushed everything back up towards the his stomach and when it hit his stomach he threw up. Because he was crying he would have aspirated all his vomit. Instinctively his air way spasmed shut so nothing would get down into his lungs, but that also meant he couldn't breathe.  They started suction and they had to tear off the things in his nose giving him oxygen so they could "bag him". Heidi and I just stood back hugging and crying thinking we were watching him die.  It was honestly the scariest thing I have ever experienced in my life.

They got him cleaned out but he kept vomiting even once we got him stable and back up to the NICU. Again, luckily he did aspirate anything and poor little guy started to recover from there and has been getting better everyday.


He was breathing so well we were able to take away any breathing support.  Nothing stuck to his face, we get to see how cute this little guy is. 





We have started him on oral feedings for the first time. They made a binky trainer. It is a preemie binky with a small feeding tube attached to it. As he sucks we give him a little bit of milk from it. Its been really fun to see how much he likes eating. He gets so calm and he is so mellow after words. Its so great. They are evetually going to put a tube back in his nose that goes down to his stomach so they can control his feedings a little, but we will still be able to feed him with the binky trainer. 

We still have a long road though. Little guy is only about 3 lbs 4 oz still. So hes still pretty little. He love him so much and with less tube and everything on him, its way easier to hold him and take care of him.  So we try to hold him most of the day :). 

Saturday, December 14, 2013

The NICU roller coaster.

We had a pretty good week this last week. Wyatt was doing pretty well. They had started to up his feedings a little more each day. He wasnt getting any thing orally yet. They were feeding him through a tube that went up his nose and down into his stomach. But Thursday morning he woke up vomiting and looking sick.  They had to stop feeding him because there is obviously something not working well. 

You can see the little wrap on his hand and the tube in his mouth. They had to put the tube down his mouth to continually suction bile and other things that were backing up.  They had to take so much fluid from his stomach and he had gotten so many blood draws for labs that his hematocrit was really low so they had to place an IV  to give him some additional fluids and blood (transfusion #7). He was pretty lethargic all day and we could tell he didnt feel good. 

They decided to do some more X-rays of his stomach on Friday to measure any distention of bowels. He looked slightly more distended Saturday morning when they took some more images. So they are concerned that there may be an additional blockage of his small intestine. That is seriously the last thing we want to hear. They hope that it is just that his small intestine is just swollen and creating a blockage rather than there actually being a problem. Keep our fingers crossed for that. 





Depending on the picture, his hair will look blonde. 


Monday, December 9, 2013

x-Rays and Bath time 2.0

We had a pretty good day today.  The doctors decided to a "study" of Wyatt's re-feeding tube. They wanted to make sure that it was still inserted into the lower half of his small intestine an hadn't moved. This is critical because they don't want to take whats partially been digested and inject it into Wyatt's abdomen. So we had to wheel him down the first floor where he got his x-Rays after the life flight. It was pretty amazing to see. We watched them insert the contrast into his tube and slowly you could see his small bowel and colon show up on the screen. The radiologist that looked at it was very pleased with how it looked. That was good news. They are still slightly concerned about his CRP level. Your CRP level indicates inflammation in the body. The inflammation can be from and injury, from surgery, from an infection. So it doesn't tell us specifically what is happening, but they believe it could be a pre-cursor to additional infection so they are going to keep an eye on it. Thats good, but it also means they have to stick him more often.


Wyatt also had a follow up ECHO of his heart to make sure his PDA in his heart had closed on his own. They hadnt heard a murmur for a few days. The picture below is what Wyatt decided to do during the ECHO.  They have to put a roll under his back to make him arch a little so they can get the images they need. So he put his hands up by his head and fell asleep like this while they continued. Pretty cute.  

 Heidi doing more skin to skin with the Oral care people that are helping Wyatt learn to suck. He was too sleepy though.
We did Bath time again. How cute is this little face. We got him all clean and lotioned up and then into the warm blanket. He was all about it.  


Doing some oral cares. We put some breast milk on a Q-tip that he sucks on. He loves it.  





Smoked after all the action today. As soon as we put him in after his bath he was out. 



Sunday, December 8, 2013

Dec 8th Lots of skin to skin

Today was another good day. We both held Wyatt for an hour each. I even did skin to skin with him. (Yep I took my shirt off in the NICU) But they say its really good for him, very calming and helps him better regulate his temp and everything.  You can see how good he looks in some of these pictures.  We took some of Heidi's milk and swabbed the inside of his mouth. We even decided to try the pacifier dipped in milk and he actually started sucking on it.  


 They also moved his oxygen flow down. There were a couple of times where his little nasal tube wasnt even in his nose and his oxygen saturation was great. Which means he was breathing on his own and did great.
They are going to move up slightly on his feeds. He only weighs 1190 grams (2lbs 9oz).  Tomorrow they are going to look at starting to re-feed him but they are going to look at his re-feeding tube to make sure it is still inserted in his small intestine.  They will inject some contrast into the tube and do an X-ray and see if it is in his intestine.

Dec 7th- Spinal Tap

Saturday Dec 7th

We had another good day at the hospital Wyatt has been doing better. He decided it would be okay to hold it in his mouth. He didn't really suck on it. It barely fit in his little mouth.  You can see his hair really well in this pic. We are thinking he is going to be a little blondie, but who knows at this point. 
He looked so comfortable all day


Because of some of his lab levels Heidi and the doctors were concerned there was something else from an infection standpoint and the team decided to look at doing a lumbar puncture to extract central spinal fluid to check for Meningitis.  They roll him on his side and then one nurse pushes his knees up to his chest to curve his back while another nurse finds the spacing between two vertebrae and pokes him with a needle. Its pretty crazy to watch because they pierce the skin and then the nurse continues to slowly push the needle in until she meets resistance and feels a little "pop" and then they are through his little disc. Its done the same way for women when they get an epidural.  The needle they use has two parts. it is a needle within a needle.  It looks solid if you were to look down from the top. So what they do to not allow blood or skin to contaminate the test is they use this needle. They  go and poke him and get it in the right depth and they pull the middle needle out so the one that is left in his back in the picture here is now hollow. Once they pulled it out, this clear liquid just like water started dripping out and the nurse collects it. Luckily the test for Meningitis came back negative. He didn't even flinch while they did it. He did awesome. 


They have to perform his lumbar puncture in a sterile environment so I had to put on a mask and hair net.