Bentley Keith Hall Part 2

Our stay in the NICU:

The next day they had taken Bentley into the nursery to do all the newborn checks on him and it took them forever to bring him back in. They finally did and then someone came and took him back again. Then the pediatrician came into our room. He said that the bruising that was on Bentley's face and back was caused by blood vessels breaking. They had pricked his little heel to do the normal newborn blood work and his heel didn't stop bleeding for almost 30 minutes. When they got his blood work back it was evident why. His platelet count was at a 14. Meaning he basically had no blood clotting ability to stop the bleeding. Also his white blood count was so low that there were basically no infection fighting cells in his entire body. He said that they had admitted him into the NICU because they had no idea why his levels were so low and there was no way he was going home like that. The dr told me a whole bunch of possibilities and some of them were pretty scary I am not going to lie.

When infants have low platelets and a low white blood count there are a series of infections that they check for because they are the most possible causes. One of those is an infection called CMV. It is something that the mother can pick up while she is pregnant and not even know it because it manifests itself in adults as just a common cold. They were going to start him on antibiotics for all these different infections because in babies it is best to get the antibiotics started before they even know what it is to give them a better fighting chance. Also, they were going to have to give him a platelet transfusion. Because of the possibility that he might have CMV they needed to get CMV negative platelets. The closest place that had these were salt lake and it was going to take 6 hours for them to get there. They had some other platelets on hand in case he got too worse by the time those got there but they were CMV positive so they really didn't want to have to give him those in the case of an emergency. The reason why they were so worried was because his platelets were so low that there was a possibility of internal bleeding.

 I think I was in shock that my baby was in the NICU. It didn't really set in until we were finally allowed to go in and see him and I saw him hooked up to all those monitors. It was such a helpless feeling. I wanted to just take all his pain away. He was such a good baby though. Through all of them poking him and putting IV's everywhere he barely cried and I think it was mostly because he just felt so crappy. My poor baby.

Because his white blood count was so low, he was in an isolated room all by himself in the NICU. All the nurses had to wear special gowns, masks, and gloves to make sure they didn't give him anything.But they also spoiled him pretty good. He got the platelet transfusion early Wednesday morning and by the afternoon he was already starting to act better. They did a head ultrasound to make sure that he didn't have any internal bleeding and it came back just fine.

I had to stay in the hospital through Wednesday because they needed to make sure my blood pressure went down to where it was supposed to be. Luckily it did and I got to stop taking the stupid high blood pressure medication. I was not looking forward to going home that night without my sweet baby. Throughout the day I had been going in every three hours to try and feed him and when it came to the final feeding of the night I was about in tears. We went home and I cried myself to sleep. I felt like such a terrible mom having to leave my baby at the hospital even though I knew it was what was best for him.

I went to the hospital every three hours throughout the day and night, only skipping one feeding at night so I could at least get some sleep. After I would get home from the hospital I would have to pump to make sure that he had some breastmilk that they could feed him if he got hungry in between feedings, then I would only have like 45 minutes and I would be back up there again. It was pretty taxing and so hard to have to see my baby hooked up to all the IV's.

They drew blood from him everyday to check and see where his levels were at. His platelets were dropping, which they expected because platelets don't last forever you are always making more, and his white blood count was about the same. Finally on Friday all of the test results came back negative so they took him off all the antibiotics. It was a good and bad thing that the results came back negative, good because it meant that he didn't have an infection, bad because it meant we still didn't know why this was happening to him. They were pricking his poor heels everyday to check and see what his levels were.

The pediatrician decided to schedule an appointment for us to go see a hematologist in salt lake the next Thursday to see if he would have any answers for us. He told me that if Bentley could get his feedings up to 60 cc in a 3 hour feeding then we could take him home. At this point he was maybe getting 12 to 15 because he would get so tired he would just have to stop. One of the nurses suggested to me to feed him with a bottle because he would get more faster and have to exert less energy. I was a little hesitant at first but I wanted to take him home so bad I was about ready to try anything. Plus since I was pumping he would still be getting breastmilk and not formula.

By the time Sunday rolled around I decided to stay the day at the hospital to make sure whenever he was hungry I was there to feed him because I had a goal of bringing him home by Monday. Unfortunately, as I was there on Sunday, his oxygen level in his blood decided to drop too low so they had to put him on oxygen. He was only 10 days early and so they knew he didn't have premature lungs and since he hadn't needed to be on oxygen before this they were worried this was a sign of an infection. So they put oxygen on him and drew some more blood for a blood culture and then did a chest x-ray to see how his lungs looked. I was so tired and overwhelmed at this point that I left the room while they did the x-ray and just bawled my eyes out. I was so worried about my baby and I just prayed and prayed that we would make it through this whole situation. They started him back on antibiotics until his blood cultures came back negative and I was told that there would be no way we could bring him home until he was off antibiotics and oxygen.

Once again I cried myself to sleep that night. Stupid postpartum hormones combined with the stress of having him in the NICU basically had me in tears all the time.So once again it felt like we were back at ground one. They had to give him another transfusion of platelets on Monday because his platelets had dropped too low again. The pediatrician on call scared me so bad because he said there was a possibility that we would have to transport Bentley down to Salt Lake to Primary Childrens Hospital. He finally got a hold of the specialist in Salt Lake and he said that if he was transported down that they wouldn't do any testing on him until he was at least a month old. So basically they would be doing the same thing as the NICU here was doing so there was no point in us being in Salt Lake.

 By Wednesday we had gotten his blood culture back and it was negative so they stopped him from his antibiotics and took him off his oxygen and he was able to do just fine by himself. We had ended up cancelling our appointment in Salt Lake since he was still in the NICU. Thursday morning they drew more blood and his white blood count finally had started to go up. Because of this the doctor told me that he was ok with Bentley coming home with us he just wanted to consult with Salt Lake first to make sure they were fine with him being home and continued to be watched. Finally some good news!

Salt Lake finally got back with him by our 4:30 feeding and we were able to start the discharge process. We were so excited! Because of his white blood count still being low the Dr wanted him to stay in isolation at our house until they found out more at his appointment on Monday. Coincidentally Thursday, the day we got to take him home, was his original due date the 18th. So finally after 10 days in the NICU we were able to go home as a family!

Poor guy the best veins they could find for his IV's was in his head...

One week old and bright eyed. They finally put some clothes on him when he didn't have an IV in his foot anymore. Unfortunately they all drowned him.

The two loves of my life!

I love him!

Being home:

After they sent us home they said we would need to go into the doctors office on Monday to check his levels. We got home and had to set up the playpen in our bedroom because we hadn't expected him to come home so soon. I was a little worried how the night was going to go because in the NICU they kept it super warm, they had his bed just how he liked it, and they had this heatrbeat white noise machine that put him to sleep at night, that we hadn't gone and bought yet. Also they had him  on such a  rigorous feeding schedule at the hospital that I had a feeling that now that he was home he was going to start eating as often as he wanted.

Needless to say the night was really rough and we could not get him to sleep. He was so grumpy because he wasn't sleeping so the next morning first thing I sent Josh to go get one of those heartbeat machines. The NICU had told us that they got theirs at Walmart so that is where Josh went first. It was nowhere to be found and the people at Walmart said they only sell it online now. So while Josh kept looking at other stores, at home I started calling a bunch of stores. Nowhere in town seemed to have what we needed! Josh thought he found one at Kmart but when he got home we realized it didn't have the heartbeat sound just a bunch of other ones. In my search through calling stores finally a really nice guy at Fred Meyer told me that he bought some for his kids from Bed Bath and Beyond. So I called over there and finally found one. I went to pick it up, got home, and it didn't work.... ugh so once again I went back and got one that finally worked.

It was really rough to try to get him on somewhat of a schedule but we are making progress. Each week when we have gone in for checkups his numbers have gone up and at our last checkup his platelets are finally at a normal level! His white blood count is still lower than it should be but it is slowly getting there. And his numbers looked so good that the Dr feels comfortable not checking him again until his two month checkup!

We love having him home and being a family and I will write a post soon about him being a month old! Time flies by so fast!

Wide eyed on his second night home, how can you not smile waking up to that cute face though?!?

My two boys

Uncle Mike was so excited to finally meet him!

Auntie Melissa and Bentley

Just chillin' out on grandma while we tried different hats on him.