Elizabeth's Time in the NICU

*I'm finishing this almost 4 months after I started it. The details are beginning to get a little fuzzy, but I wanted to make sure that I had this down before I forgot too much.*

Started 4/3/2011

Well, a lot has happened since my last post. In fact, it all started that Wednesday afternoon. This isn't going to be a pretty post, but I know I'll want to remember what we've gone through later, so here goes..,

Elizabeth

Wednesday after our first pediatrician appointment Alan and I decided we needed to supplement with formula until my milk came in. Alan and mom were with Elizabeth trying to feed her when she suddenly became listless and unresponsive. We rushed her to the closest ER, where I later found out she had coded for about a minute. The ER had no idea what was wrong so they called Texas Children's Hospital who immediately sent a team of doctors by ambulance. The team was called Kangaroo Krew.

Granddad and Elizabeth

In the meantime, there were tons of doctors around Elizabeth trying to stabilize her. They intubated her twice without any sedation. They weren't able to find a vein so they did an IO (don't know the real name, but you basically drill into the bone of the leg to gain good access) in both legs.

After what seemed like forever, the Kangaroo Krew arrived. They saw that Elizabeth was fighting the tube down her throughout so they extubated her saying they could provide oxygen another way if needed. Luckily, it wasn't needed. They assessed her and then we loaded up the ambulance (I rode in the ambulance) and Alan and mom followed.

Dad and Elizabeth

When we got to Texas Children's, we saw all sorts of doctors. I can't even remember them all. They immediately started Elizabeth on iv antibiotics in case it was an infection. Some of the reasons for her decline included genetic issues, infection, and metabolic issues. Over the course of the next few days, Elizabeth went through pure hell. She's been poked and prodded more than I have ever been. They started with an IV in her scalp, but after about 2 days decided that needed to change, so they tried 3 times with 2 different people before they successfully guided an IV through her vein (in her arm) using an ultrasound. She ended up with 2 other IV sites. One in her foot and another in her other arm.

Grandmom and Elizabeth

She also had an EEG to make sure she wasn't having seizures, an ECHO to look at her heart ( they heard a small murmur ), a CT Scan and MRI to look for a brain clot, and tons more needle pokes to draw blood for cultures. They also put a NG tube (feeding tube) down her nose, which took 2 nurses several tries before they got an ENT involved it took the ENT several tries to get it in, too. *This is where I stopped back in April.* Everything major has turned out normal, which was such a blessing. Elizabeth was also seen by an ophthalmologist because she had a "blank stare" at some points. It was determined that everything eye wise was normal, as well. *I'm sure she had many other tests done, but I'm blanking on them right now.*

In the beginning, Elizabeth was put on soy formula while being tested for metabolic disorders. During that time, however, I continued to pump and freeze whatever I got. Elizabeth had the NG tube put in because they wanted to make sure she was taking in a specific amount of formula at each feeding. If she didn't take it by bottle, they were going to finish it using the NG tube. Luckily, it only had to be used once or twice! They kept it in much longer though, since it was so hard to get in.

Drinking a bottle of soy formula

We stayed in Level III NICU until Monday morning. While there, we had some wonderful nurses! One even got very upset when she wasn't assigned Elizabeth on her second shift. (Of course, we were upset too - we loved her, but at least she was still in the same "pod.") On Sunday, we also had some visitors! Two of our very good friends came up to the hospital to meet Elizabeth. They have a baby girl, who is 3 months younger than Elizabeth. I know they'll be great friends! From Monday to Saturday, we were in Level II. Level II was for babies that didn't need as much care, and while the nurses there were good, I am so glad that someone (me, Alan, or my mom) was with Elizabeth at all times!

Burping!

The hospital that we took Elizabeth to first took blood cultures at the time of admission. They ended up growing some kind of bacteria that both them and Texas Children's was having a hard time naming, so enlisted the help of a special lab. It took forever, but it was finally determined that Elizabeth had some kind of strep pneumococcal (strep pneumo for short). This is a very dangerous bacteria, so we caught it in the nick of time!

Yawn!

Throughout the course of our stay, we had close contact with the infectious disease doctors. They were very thorough  which we definitely appreciated! They wanted to send us home after 7 days of antibiotics, but day 7 was when they determined the severity of the bacterial infection, so that 7 days turned into 10. We were discharged Saturday, April 9, and so happy to be headed home!

Splint to keep arm still

Mom, Dad, and family:

While Elizabeth was in Level III (Wednesday, March 30 -Sunday, April 3), Alan and I stayed at the Ronald McDonald House that was on the same floor as the NICU. Both of our families were so good to us while we were in the hospital. Alan's sister that lives in the DFW area drove in for the weekend and stayed with Elizabeth while we slept. It was very comforting to have someone we love with Elizabeth at all times, especially when doctors were still coming around the clock and running all sorts of tests night and day.  I was pumping at the time, so every 4 hours during the night, Alan and I would head to the "pumping room" (for lack of a better name) and then check on Elizabeth whenever I was finished. Alan's sister would update us on what was going on, how well she ate, what tests were run, etc. and then we would head back to the Ronald McDonald house. We also had both my parents and Alan's parents in. My dad was great because he knew all of the medical jargon and knew all the right questions to ask. Alan's dad, who also has a medical background was right at home, too. He knew what all the nurses were talking about and was able to interpret if we needed him to. Alan's sister that lives in Houston helped out as much as she could, before her son got sick. My brother also came down the night we took her to the hospital.

Our family of 3

During the day, I would pump every 3ish hours. I actually started to enjoy this time, once Elizabeth was doing better, because it was down time, where I could relax, check my messages, and make any phone calls that I needed to. The pumping room at the hospital was great! There were two individual rooms, where you could go if you had someone with you, as well as a room with 8-10 pumps divided by curtains if you were by yourself. The nurses and lactation consultants were great and I felt very comfortable with them.

Mom and Elizabeth

Everyone but my mom was gone by Sunday evening (I hope I'm remembering correctly). One important detail to remember is that this was the week/weekend of the Final Four, which was taking place in Houston this year. Sunday afternoon before my dad left, we were trying to work out sleeping arrangements for the remainder of Elizabeth's time in the NICU. We wanted someone to be with her at all times, but didn't think it would work out with the Ronald McDonald house, seeing that you could only be there at certain times during the day/night. And it also wasn't reasonable to travel  from our house to the hospital several times a day. My dad decided to call around at various hotels to see if any of them had rooms available. We struck out at several hotels, even finding some that had rooms available for one night here and there at ridiculous rates, before finding a room at the Holiday Inn. I was shocked when we arrived at the room later that evening. It was VERY nice and it had a dishwasher and refrigerator, perfect for me since I was pumping and had parts that needed to be washed.

Sleeping

We quickly got into the routine of Alan and me coming to the hotel around 9-10 each evening. I would pump every 4 hours, like I did while we were staying in the hospital, and we would shower/sleep/relax until the next morning. Alan would drop me off at the hospital around 6-7 and then make his way to work. Once I got up to the NICU, my mom would go grab us some breakfast while I would nurse Elizabeth and then we would eat it in the waiting room. Mom would then head to the hotel to shower and sleep before coming back later in the afternoon. We would eat a late lunch when she got back and then hang out with Elizabeth until Alan came back for the evening, most of the time with dinner. During the day, I would pump every 3ish hours, just like when we were in Level III.

This routine worked out great! I am so fortunate that my mom was able to stay with us and help us out! We were never so happy for the weekend, though, because that meant Elizabeth got to come home for the second time! :)

Ready to go home!!

In the car

On our way home!

I know this is a long post. Kudos to you if you made it all the way through. Hopefully I didn't ramble too much, but, as I said at the beginning, I just want to have this documented for my own memories. I also don't have tons of pictures from this time. At first, I didn't want to take them because I was so scared. All of these pictures are from after we knew Elizabeth was going to be fine. Looking back, I wish I had taken pictures of all of our visitors.