The girls’ time in the NICU was an emotional rollercoaster. It was frustrating because they didn’t really feel like our babies since we weren’t their primary caregivers. I was also getting mixed signals from the doctors and nurses which, combined with my raging hormones, was really upsetting to me. For example, on Tuesday, my doctor/nurses were telling me to stay in bed because I needed to recover. Meanwhile, the girls’ doctor was calling me and telling me “Your babies need you. You need to be here with them to help them improve if you want them to go home…” I hear that and called my nurse immediately to have her bring me to the babies. Once I got there, their nurse told me it was a bad time and that I was in the way and I wasn’t allowed to hold them. Grrr!
Here’s the day-by-day summary of the girls’ stay in the NICU. Probably more detail than any of you care about, but I needed to get it down before it becomes any more of a blur.
Tuesday 11/22 – we were told that the girls would need to be in the NICU for observation until Wednesday, but that they appeared to be healthy enough to be moved to the general nursery at that point and could then be brought to my room if we wanted. I tried to go visit the girls, but since they were in the middle of being assessed, they still wouldn’t let me get close to them. Luke was able to spend some time with them that afternoon though. I was finally able to really hold them for the first time that night.
Wednesday 11/23 – Dani was breathing faster than normal and both girls were having problems eating efficiently and had to get fed some of their meals through feeding tubes, so they weren’t ready for the general nursery. The doctor thought they’d likely still be able to go home with me once I was discharged.
Thursday 11/24 (Thanksgiving) – My family picked up a Thanksgiving meal and brought it up to the hospital and we ate together in the cafeteria before going to visit the girls. The girls were having issues keeping their temperatures up but were staying (barely) within the acceptable range. We were told the girls would have to stay in the NICU a little longer than expected – their doctor estimated that they’d be home within the next week though.
Here is Grandma and Grandpa feeding the girls their Thanksgiving lunch.
Friday 11/25 – Luke and I went to visit the girls early in the day and I was shocked to see that they had been moved into isolettes overnight. An isolette is basically a plastic temperature-controlled chamber. I broke down because it really felt like a step in the wrong direction. They were only allowed out for their bottle feedings and had to be put back shortly afterwards. The doctor assured me that it wasn’t as bad as it looked and that they would likely still go home on schedule. Basically the girls didn’t have enough energy to both keep themselves warm and eat, so both their temperature and the amount that they were eating from the bottle were suffering.
Saturday 11/26 – Being in the isolettes really helped the girls’ appetites. They started eating better and were able to get fewer meals through the feeding tubes. I got my discharge orders early in the day, but I was told that insurance would pay for the full day so I just needed to leave before midnight. Luke and I took advantage of that and stayed until about 10:30 that night. It was sad going home without the girls and seeing the empty car seats in the back seat. I was still in a lot of pain though, so it was good to have a little time to recover while someone else was caring for the babies.
Sunday 11/27 – We went down to the hospital for the morning feeds and I was allowed to nurse them for the first time. We talked to the doctor before we left and she was super optimistic about the girls’ progress. We told her we were planning to get a hotel for the week so we’d be closer to the babies and her comment was “I don’t think you’ll need it all week.” She also said that she was off until Wednesday night and didn’t think she would see us again. We were so excited. It had been a really stressful and emotional week, so it was such a relief to hear the girls were doing better than expected. The girls’ orders were also changed so they were moved back to being 100% bottle fed. Dani’s feeding tube was even removed that afternoon since she was eating so well.
Hooray for no more feeding tube!
Alli wasn't so lucky...
Monday 11/28
We packed our bags for the hotel stay and headed to the hospital in the morning. The girls’ new doctor was there when we arrived, so we got an update on their progress right away. We were still on a high from Sunday, but she quickly burst our bubble. She told us there was no way the girls would be able to go home on Wednesday and she expected that it would be more likely the middle of the following week. We couldn’t understand why she had such a different timeline than their previous doctor when nothing had really changed with the girls. The girls were still in isolettes at that point and would have to be weaned back down to room temperature and then monitored before moving into open cribs. She didn’t feel comfortable moving them down quickly and wanted 48 hours of monitoring. I get angry all over again thinking about our conversation with her. Both girls continued to improve in terms of temperature control and feeding, and Alli’s feeding tube was removed in the afternoon.
Tuesday 11/29
We went to visit the girls in the morning. They were doing well and their isolettes were moved closer to room temperature overnight. We finally were given a better explanation of why the process was taking so long. Basically there are rules in place to where the nurses can only change the temperature in the isolettes in half degree increments and they are limited in terms of how many times they can turn it down during a 12 hour shift. In doing the math, it was impossible for the nurses to follow those guidelines and get the girls down to room temperature and then monitored before Thursday. Also, in order for the nurses to turn the isolette down, the baby needs to be maintaining a body temperature above a certain degree. Each time we had them out of the isolette holding them, their temperature would go down. It wasn’t outside of the normal range, but they weren’t staying warm enough to allow the nurses to change the isolette temperature. So basically by sitting and loving on them we were unintentionally prolonging their stay in the NICU.
In the afternoon I went in for a follow up with my doctor because of excessive swelling in my legs. They ran some tests but said I really needed to be on bed rest for at least a couple of days to help me heal. We decided that it was best for everyone if I took some time away from the girls and stayed in bed. That way they could spend the maximum amount of time in their isolettes and hopefully improve more quickly and maybe rest would help me recover.
Wednesday 11/30
We checked out of our hotel and briefly visited the girls before heading home. The doctor called me later that day and told me they were doing much better than she had anticipated and would likely be able to go home on Friday. She decided that she was comfortable only monitoring them on room temperature for 24 hours instead of the 48 she had initially planned on.
Thursday 12/1
I stayed home and rested and Luke went up to the hospital for a few feedings. The girls were moved into open cribs in the afternoon and just needed to be observed overnight before they’d be cleared to go home. I had been having night sweats/chills for several days, but it became extreme on Thursday evening. I took my temperature around 9pm and it was over 102. I called my doctor and she said to head to the ER. I was readmitted into the hospital and during the night my fever continued to get worse and climbed above 103. They weren’t sure what the cause was, so they put me on a number of antibiotics and I slept on a cooling blanket to try to get the mystery infection under control. They weren’t sure if I was contagious so I wasn’t allowed into the NICU.
Friday 12/2
Luke tried to get the NICU to allow the girls to stay until I was ready to go home, but since the discharge process had already been started, insurance wouldn’t continue to cover their care if they stayed. They could have stayed with me in my room but they would have been completely in our care and given I was still sick, the doctors advised against it. Luke ran between my room and the NICU throughout the day and took them home around 9:30pm. I was so upset that I wasn’t able to be a part of their homecoming, but it was out of my control at that point and I was still running a fever and feeling awful. My mom met Luke at the house and helped him take care of the girls overnight.
First night at home and sharing a crib
The doctors were never able to determine for sure what was making me so sick, but my fever finally broke on Saturday and I was allowed to go home on antibiotics on Sunday night. They would have liked to have kept me there longer under observation but everyone was feeling bad about keeping me away from my babies. My doctors were pretty sure they hadn’t really fixed whatever the problem was and told me the fever would likely return and that I’d need to come back to the hospital when/if that happened. Fortunately I surprised them and the fever didn’t come back.
Thanks to our wonderful neighbors, this guy greeted me when I came home
About a week and a half later I went in for a follow up appointment with my doctor. Based on testing performed on the placenta after the babies were born they were able to confirm that the girls are identical. My doctor was pretty confident that was the case, but she said having the placenta tested is something that she always does with twins. It was also noted in that report that there was an infection creeping into Dani’s side of the placenta. We’re lucky that I delivered early because she could have become really sick if she had been exposed to the infection.
