+1 Week, 3 Days

This has been the most emotional week of my entire life. I'm sure I'll be writing our birth story at some point, but right now I feel like it is more important to update on our hospital status. The world of the NICU is a completely different one and hard to explain to anyone who hasn't been there. Your days are kind of liquid, and trying to keep people updated is impossible, because things change literally hour to hour. Please bear with me.

After James's birth his platelets were 80. Not too bad, but definitely something they were going to monitor. His low platelets would resolve themselves as my immunity left his body, which could take a few weeks, or with treatment. Saturday afternoon, they dropped to 32. He was ordered IVIG and a head ultrasound to make sure there was no bleeding. They also started him on antibiotics, something they do for most preemies for 48 hours. Sunday we found out there was a spot of old bleeding, something that must have occurred in the womb, and a band of something. The bleed they saw was only a 1 or 2 on a scale of 1-4, 4 being the most severe. Old bleeding didn't seem like such a big deal, especially if it wasn't considered severe. On Sunday and Monday, he kept breathing too quickly and we had to stop trying to bottle feed and he was just using the NG (nasogastric) tube. He has been on that ever since. They also began doing a TORCH screening, a multiple infection screening to ensure he didn't have any.

Tuesday he was very lethargic. His doctors called in Occupational and Physical Therapy to look at him because he didn't like to extend his limbs. He was definitely staying in the fetal position. He wouldn't extend them on his own and was very rigid when others tried to extend them. They also placed a PICC line, which is a heavy duty IV and much better than a regular IV--less sticks for the baby. He did begin digesting his food better and having less residuals (they would pull from the NG tube to see how much food was left from his previous feeding).

Tuesday night I called around 9 or 10 to check on him and his nurse said they were giving him platelets. I freaked out. She asked if I had talked to his providers and I said I hadn't, we had missed each other all day. She suggested we come in and talk to them. A quick tearful drive to the hospital later, we found out that some of his TORCH results had indicated he may have meningitis and they needed to do a spinal tap. He was given the platelets to increase his counts above 100 (they had been slowly rising from the IVIG and hadn't gone down) to do the spinal tap. All I'd ever heard about the procedure is how painful it can be. I asked them about that and they explained they did try to minimize pain by giving them some meds on a pacifier, morphine, and numbing the spot. Jimmy and I went to dinner and came back after the procedure to check on him. Thankfully, he was resting comfortably or heads would have rolled.

Wednesday he was still very lethargic and not much had changed. They still thought he had meningitis and amped up the antibiotic and antiviral treatments. They were ordering an MRI to fully look at his brain and an EEG because he was having some tic like movements. They also wanted to consult geneticists, infectious disease doctors, and neurologists. This was really scary for us.

Thursday James was feeling much better. He was acting a little more alert and was more responsive to the suggestions from PT to move his legs and arms. They did the MRI and 24 hour EEG. He looked like a little mummy with the bandages wrapped around his head. Guess what we are NOT going to be for Halloween... They also wanted to do another spinal tap because the first one had some contamination and genetics wants to test for a specific glucose transport issue. However, the spinal tap couldn't be done until he was completely off IV nutrition. He had been receiving some in addition to the NG tube feedings. They began weaning him off the IV nutrition Friday.

Friday was a great day for babies, but a bad day for parents. He was awake, alert, crying a bit, his platelets were continuing to increase...and he even got to see Santa! Jimmy had a sore throat and went to an urgent care to get a quick strep test. It was negative, but they gave him a Zpack and told him it would be better if he stayed away from the hospital for 24 hours. It was a REALLY rough day for him. We found out James has something called an Intraventricular Hemorrhage. It is common in preemies and really isn't related to his platelets. The ventricles are an open spot in the brain where cerebrospinal fluid is produced. What's in there should be clear, but his had blood in it. This was hard to understand because he was doing so much better. His doctor explained that effects of this kind of bleeding would not be seen immediately, but if it did happen, would show up in his developmental milestones. And he may not have any troubles. After we go home, they will still want to follow him through one of their special care clinics to ensure he's hitting milestones. To know that your child is sick with something you can't fix, something you can't see...I don't know how my parents did it without crying all the time. We also found out that the treatment for meningitis for him is a 21 day run of antibiotics. Thankfully we found out later that the 21 days started the day he was born.

Saturday thru Monday were kind of like vacation days. The hospital was on a skeleton crew, so no testing was done. We got to snuggle him and watch him practice opening his eyes. Due to swelling that most babies have around their eyes after birth and immaturity, he hadn't really done a lot of peeking around. He so made up for it and stared at Jimmy and me for long moments. He did get off of his IV nutrition. He got upgraded from the Intensive Care Nursery to the Transitional Care Nursery which means he needs less medical attention from the nurses and more learning how to go home attention! One of the doctors in rounds yesterday did mention something about an ultrasound today for his head to check on the bleeding, but apparently it was cancelled. I'm not sure why, but they usually check on those bleeds every 28 days, so he has some time before his next one. Maybe they got confused. He did get his second spinal tap today, but again was resting quietly when we came in after the procedure. We did begin bottle feeding and OT is going to work with us a lot on that. Little James doesn't realize that his mama has seen OT in action and knows it works, so I'm not going to let him be lazy! We have 11 more days of antibiotics, and I'm hoping and praying he can learn how to eat so when those are over, he will be ready to go home. He's done a great job today regulating his body temperature and not needing the heat lamps. PT was so impressed at how much more relaxed his arms and legs are. He will keep them extended without us making him and is so much more at ease in his movements.

I am amazed at how kind everyone is. We can call and talk to our baby's nurse at any time. We can talk to the doctors and nurse practitioners 24/7. If we get back to the hotel and have questions, we can call. The social workers hooked us up with Ronald McDonald house and when that wasn't the best fit for us (a post-partum, pumping Mama in a communal bathroom and no comfortable place to pump, walking up and down stairs) found us a medical rate at a hotel. There are family groups who offer support and information. It's also amazing how when I'm in the hospital, I can't remember any doctors' names, but when it's my baby I can almost tell you the name of every nurse, nurse practitioner, and doctor who's laid a hand on him.

AND THEY ALL SAY HOW CUTE HE IS! It must be true! Obviously he's Jimmy and mine's baby, and we are 100% biased that he's beautiful, but it is funny to hear from people who don't have to say it. We are so in love with him. I'm having a bit of a break because I've been at the hospital a good part of the day, and Jimmy is doing some kangaroo care with him. I love seeing them together.

I'll update as I can, but this is a summary and I've left out a lot of the changes that occur on the day-to-day. The important thing is that the danger seems to be over and he is working on things that all early babies work on.