Early Morning Day 5

Ever since we were able to see Jake in the NICU all we could talk about was how perfect his little head was! It was just adorable! I guess the fact that he was born cesarean made a big difference! He didn't have to go through the whole birth canal! He is such a handsome little guy! To our surprise when we came in on the 4th day we saw a bunch of stuff sticking out of his little head! They had taken the IV out of his arm and put it on top of his head! Poor guy! It didn't seem to bother him and it actually did make holding him and feeding him a lot easier not having to worry about accidentally pulling the cord out of his arm.

Jake initially went into the NICU because he had fluid in his lungs and his lungs were also a little immature. Those problems resolved themselves very quickly (12 hours or so) thankfully. However, in doing additional testing they found that Jake was severely neutropenic. He had major problems with his white blood cells. One area in particular was of big concern...his neutrophils; he didn't have any! This is a problem because it puts him at a high risk of infection. The neutrophils fight off bacteria in the body and help keep us healthy, so without any the doctors were very concerned. This is why they wanted him on an IV, so he could be put on antibiotics asap. This also helped with feeding for a while which was a good thing because it took a little longer than usual for my milk to fully come in.

The problem with Jake not having any neutrophils was that the doctors didn't know why this was the case and what this would mean for Jake. It has been a major concern for us. They said that he was not able to leave the hospital until his neutrophils came up to over 500. He should have them at 1500 (what we all have), but they would be happy to see his at at least 500. With him having none the doctors didn't know long he would have to be at the hospital. We of course asked a lot of questions and had quite a few different doctors come and talk to us about his situation. The problem is that these doctors do not see a lot of situations like this, so they weren't sure exactly what to do. They spoke a lot to a doctor in Austin who they are affiliated with to try and understand things as much as possible. He is a hematologist/oncologist. The doctors from the hospital would send all of Jake's information to this specialist and then he would look at Jake's numbers and his charts and try to help the doctors at the hospital know what steps to take next. The difficult thing was that from day to day it didn't seem like the doctors knew any more than the day before and any tests they ran would take a week or so to even come back.

What the doctors could tell us was that Jake could have any number of problems. One potential one could be that while Jake was in the womb some of my antibodies mistook his neutrophils as something that needed to be attacked, so they were attacking his neutrophils. This happens when some bacteria that I was exposed to at some time in my life looks similar to what Jake's neutrophils look like. If this were the case then Jake would be producing neutrophils, but my antibodies would attack them immediately and leave him with nothing. The remedy for this situation is just time. It could take anywhere from a few weeks to a few months for my antibodies to get out of his system. Then he would be able to function as normal. This would be the best case scenario, but only time will tell if this is part of the problem.

Another guess would be that his own body is attacking his neutrophils. In this case they would have to try and give him medicine to trick his body into not attacking the neutrophils. Hopefully this would help. The problem is that they didn't know if his body was even making neutrophils to begin with!

Another guess would be that he just isn't making any neutrophils and so he would have to be on medicine for the rest of his life trying to compensate for the problem. They talked about doing a bone marrow test and many other things to see what was wrong, but there was no time frame and that was very frustrating. We felt like we were just in limbo with no estimated time of his ever even coming home or getting better. The doctors just seemed stumped.

Another guess the doctors had (and this one was the least likely) was that he had some sort of disease which would lead to leukemia (problems with the white blood cells). Although they said this was the least likely, they really had no idea what was going on, so it very well could've been the case as far as we were concerned.

All of this news was very worrisome and scary. There were so many different scenarios and possibilities that they gave us, but I can't remember all of them. The most difficult thing was not knowing.

I had to stay at the hospital an extra day (4 days) because of struggles with my surgery, so that was good since Jake was there. The hospital then gave me two extra days to "room in" so I could be near Jake. Josh and I both stayed the whole time. The only problem was that we were supposed to leave Thursday night and Jake was supposed to stay. We just weren't sure what to do because Josh had to go back to work on Friday and I needed to be with Jake and feed him. I couldn't just go and stay at the hospital because I need to lay down after feedings. There is no place for me to rest at the hospital when I am no longer a patient. I am also not able to drive and so getting to and from the hospital that is 30 minutes away was going to be tricky multiple times during the day. I was pumping as much as I could so I could have breast milk stored for the nurses to feed him at night when I wasn't there.
I was so grateful that my mom was here to help me with everything. I knew she could drive me and still help take care of the kids and that we would somehow figure all of this out.

Josh and I had many talks about what all of this meant. We were just going day by day asking for updates on his "numbers" and to talk with more doctors. We didn't know if his condition would be something that was long lasting or not. We also didn't know if he would end up having leukemia and would not live very long. We knew that all of these things were up to the Lord and that He had a plan for our little Jacob. Although hard to believe, we knew that the Lord loved Jacob even more than we did. We were just so grateful for the gospel for the perspective that it gives us. We said that come what may we knew that Jacob would be with us for eternity, so if his life on this earth was cut short that that was the Lord's will and we would just be comforted knowing that we would see our son again. Those thoughts were not easy, but they were full of gratitude that we had him while we did. We had some very special times with Jacob in the hospital. We wanted to make sure that we were doing all we could do and that Jacob knew how loved he was and that the Lord knew how much we loved Jacob. We had family prayer with him and really stayed very positive about his situation.

Since I am such a worry-wart in general it was wonderful that I felt completely upheld by the spirit during all of this. I was blessed with a great perspective and knew that the Lord was in control. After just having a baby and my hormones being out of whack (and my natural tendency of worrying) it would've been natural for me to kind of freak out about this whole situation just not knowing what is wrong with my little baby. I am just so grateful that the Lord has stood by me so strong. I really wasn't worrying too much. I was definitely concerned, but I was able to have faith that the Lord loved me, and my family and that He would help us through this. I think having the experiences I have had growing up have helped me so much through my trials. I have seen my brothers and my parents face so much adversity and come through it so strong that I just have no doubt that the Lord is present in our lives in all that we do.

It will be nice when we finally have an answer as to what the situation with our little boy is. All I asked from my family when they would call is that they pray for Jake and put his name in the Temple. I was brought to tears more than once when my mom would tell me (she was usually the one talking to everyone) that they already had put both his name and mine in the Temple! How remarkable. I know that with all of the prayers and love and support from so many that everything will turn out as it should. It was just a blessing in the first place that he had "problems" with his lungs because without that then the doctors would've never found out about these other issues!