Thursday, July 21, 2011

A Lengthy Update & "The Event"

Well, that last post was fun. Thanks for introducing yourselves everyone, its fun to know who is out there. If you didn't say hi you can always feel free to do so anytime :) So, I think it's been a few days since I've given any updates on Cohen because we were waiting on a few things to be figured out. Cohen had to be moved out of his private suite for 2 days because they were doing a clean of his room (there are 6 rooms of babies total, each room has about 5 babies in it). So Cohen took a little trip over to another room and he is happy to say that he is now back in his own room and enjoying the peace and quiet!
I know I mentioned the other day that we had a rough night. I was doing kangaroo care with Cohen and I thought his breathing sounded funny so I had mentioned it to the nurse and she measured his tube to make sure it was in the right place and it was. All his vital signs were fine, so I just tried to be reassured. However, I kept feeling like something was funny with his breathing. As they went to move him back into his isolette his breathing tube came out. He obviously started having a lot of trouble with his breathing and was turning purple while he was on me. They quickly moved him into his isolette and called all the doctors in. At this point I left the room because I was starting to feel really anxious. I'm glad that I did because they had to do chest compressions on him because his heart rate dropped really, really low. They got his tube back in and got him stablized but it took a little bit. In the meantime, I was out in the hallway having my first panic attack :( I thought that my baby was going to die that night and I couldn't bear the thought of losing him. It was just too much for me. Eventually I settled down and went back in to see him when they said he was stable. He was just laying in his isolette looking up at me with the biggest eyes like "Hey, what on earth happened?" I am so thankful that they were able to get his tube back in fairly quickly, the response time for emergencies around there is very good! I am also so glad that my mom was there that night and that it wasn't one of the nights that I was alone. And, being the considerate little fellow that he is, he wanted to make sure that we knew he was okay...I was changing his diaper (he is going to love all these stories some day) and I had put the new diaper underneath the old one because it's too risky for him to have nothing underneath him and sure enough he pooped as I was taking his diaper off. He managed to wreck his old and new diaper as well as the little fabric cover on his bed. When Danny called this morning to check on him we found out that he had done the same thing AGAIN this morning! I guess that's one way to get new sheets!

The day after this happened, I wasn't quite sure what to expect out of Cohen. That's quite a big event for such a fragile little guy. But, he did great! I think one of the good (ha!) things about this was that it wasn't because of Cohen. It wasn't like that happened because his heart was sick or his lungs were too sick. It was just because his tube wasn't in the right place or the tape that holds it in place got too loose. He did seem to be a little sore and restless, but all of his ventilator settings were the same as the day before. They gave him some Tylenol and Morphine to help settle him down and let him sleep. A lot of time babies as small as him and get rib fractures after having chest compressions, but thankfully they didn't see any on the xrays, they thought maybe he was just a little sore.

Cohen had his echo on Monday and it showed that his PDA is still a moderate size. Our Dr for the week was very on the fence about whether he needed to have surgery or not. She had a pow-wow with several of the other doctors and they decided that at this point Cohen doesn't need to have surgery! Although his PDA could be causing some of his problems, they aren't convinced that it's causing enough problems to outweigh the risks of having surgery. And we don't want him to have surgery if he doesn't absolutely need it. The plan for now is to have him continue on his diuretics to keep the fluid out of his lungs. They are also going to restrict his fluid intake to try and make it easier on his heart. The more volume you have circulating in your body, the harder your heart has to work to pump it around, so they are hoping that by decreasing his fluids it will be less work for his heart.

Also, his last rash scab finally fell off so he stopped his antifungals today instead of having to take them for six weeks. Since he doesn't need his antifungals, he got to get his PICC line out!!! Cohen is IV free (for now anyway)!!! He also had a temperature the other night so they sent off cultures from his urine, secretions from his breathing tube, and a blood culture and started him on antibiotics. There was a little something growing in his urine so they kept him on the antibiotics but today they decided that it was nothing so he got to stop those too. The only medicines he is getting are through his feeding tube. He is still loving his food and is up to 6.5 mL/hr. He weighed 2 lbs and 7 oz yesterday, almost up a whole pound from when he was born! Other than his big event, and considering his big event, he is doing pretty well. The doctors are happy to let him keep his ventilator a little longer in hopes that he will continue to grow and let his lungs heal and his body try and close his PDA. Our little guy is a trooper that's for sure!
In other news, we qualify for housing assistance through the state so I called them the other day to try and help us out. I thought maybe they would just pay for some of our housing costs, but it turns out they cover all of the cost of the room where we stay! The organization has certain hotels that they are contracted with and it turns out that they are all full and there are no open rooms available. So, after making phone calls all morning, the lady called me back and asked if we were okay with staying at the Collegiana (where we are now) for the rest of our stay here! So I don't think we will have to move at all until we get to go home. This is a huge blessing as we already have our stuff here and we are familiar with this place, it is within walking distance for me, and I can take the shuttle bus. This was a huge answer to prayer! We hadn't prayed specifically for this, but after it all happened it was just a reminder that God is watching out for us and he knows our needs. Sometimes, it is hard to know what to pray and I think this just reminded me that God honors the fact that we are praying, even if we don't know what to say or even what our needs are, that he does know. We are still trying to figure out our insurance mess, but hopefully that will get resolved soon too.
The blue hat in the picture above was one my mom knitted for him and he wanted to try it on today. I have been a little hesitant to do kangaroo care since the big event, but today I was brave and decided to go for it. So I picked out which hat he wanted to wear (he is getting a little collection of them) and got in my recliner chair. He got moved over to me and he did great the whole time! We had these little tiny socks that we thought might fit him. They actually fit his feet lengthwise, but were a little big otherwise. It was still pretty cute though.
I wrote earlier about how his Dr and I had been talking about "waiting for the other shoe to drop". I feel like him having his tube come out and having to get chest compressions was maybe the other shoe dropping. As terrifying as it was at the time, I almost feel better now. Like now I can move on from feeling like terrible things are going to happen to him. He essentially faced death and God brought him through it. I read these verses in Psalms while I was pregnant and we were told that our babies might not make it. I reread them again the other day after everything that happened with Cohen.

"The cords of death entangled me; the torrents of destruction overwhelmed me; the snares of death confronted me. In my distress I called to the Lord; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears...He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the Lord was my support. He brought me out into a spacious place; he rescued me because he delighted in me"
Psalm 18:4-6, 16-19

We have faced death, more than once. We have experienced death. While I was pregnant, it was hard for me not to get brought down and stuck in a place where I was so worried about losing my babies. I was worried about it, but I just had to trust that God would bring us through whatever happened. And he did. After we did lose Carter, the first weeks were so hard. I felt myself getting angry and wondering why this had to happen to us. I feel like these verses just describe where I was at and how God has reached down and rescued me. I still grieve and I still get sad, and sometimes I still question...but I know that God isn't going to leave me there. He will meet me there and draw me out, and I am so thankful for that!


  1. Oh, Jana I am so sorry that you had to go through that. I am also glad your mom was there. Such a journey you are going through. I love you so much and my prayers will continue. I am so excited about your housing! Praise the Lord!
    <3 Christine
    Tell Cohen Auntie says hi and that I love him so very much!!

  2. The Lord loves your honesty & your are His powerful witness in this journey. You'll never be the same after this time of communion you have had with Him. Claiming victory for Cohen in the name of Jesus Christ.

  3. Hey Jana (and Danny and Cohen),
    I continue to think of the three of you often. I am so thankful for the awesome nursing care you are getting (nurses rule!). Can't wait to meet the little man. He is growing so nicely!
    Laurie Morelli