I started writing this post several months ago about our final days in the NICU and have finally finished it. It was more emotional than I thought it would be to revisit this and finish this post.
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I considered titling this post "Busting out of the NICU" as it felt like a prison break getting my girls discharged. Over the holidays - Christmas and New Years week - we had constant change over of doctors and nurses. Everyone was approaching their care in a sustain them for the day method rather then work on a plan to help them come home. Finally on January 5th, we were assigned a doctor who would be on rotation for the next 12 days - I made it my mission that she would be our last doctor.
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I considered titling this post "Busting out of the NICU" as it felt like a prison break getting my girls discharged. Over the holidays - Christmas and New Years week - we had constant change over of doctors and nurses. Everyone was approaching their care in a sustain them for the day method rather then work on a plan to help them come home. Finally on January 5th, we were assigned a doctor who would be on rotation for the next 12 days - I made it my mission that she would be our last doctor.
Also around that time the girls had been in open cribs with no resperitory support for several days. They were getting some bottle feeds, some tube feeds and some nursing sessions. We had come off a weekend shift with a day nurse I really did not like. I felt like she was playing things so safely that she was holding the girls back from coming home. Specifically, she really preferred tube feeding the girls rather than allowing them to try the bottle - even to the point of ignoring the doctor's order for when to try bottle feeds.
Being allowed to try the bottle was essential to getting them home. They couldn't come home until they were off the feeding tubes and their tubes couldn't come out until they bottle fed for 24 hours straight. But with nurses who said things like "I fed Elizabth by bottle this time. The other one acted like she wanted a bottle too but I'll give her one next feeding" - I knew then were never (at least not soon) going to be given the chance to succeed at bottle feeding for 24 hours straight.
I tried to be patient. I knew they needed time to develop and mature. But the distance between us and my inability to care for them the way I thought was best was wearing on me. I became more proactive. I asked the social worker to be sure the nurse I had not liked was not reassigned to us. I attended rounds daily and pushed for orders to allow them to try bottle feeding at every feeding. I called frequently though the night to get reports after each feeding, both to monitor their progress and to ensure they were being given the opportunity to bottle feed each time as ordered. I often discovered they were not!
By Thursday January 8th, I was becoming increasingly frustrated. Feeling like "I'm their mama and they can do this (bottle feed) if you only let them try." Thankfully their doctor sensed my distress and pushed to allow us to have one of the rooming in rooms for Friday night (January 9th). With this arrangement, we would be able to stay with them for about 36 hours straight, handling all their feelings during that time.
At the point we took over feeding the girls for this 24 hour "challenge" the girls were still averaging 4-5 (out of 8) feelings a day fully or partially on the tube. Our goal was 8 bottle or breast feeds in a 24 hour period - with no tube feeds! Plus, all bottles had to be finished within 30 minutes of starting or they would have to get the balance of the bottle by tube. Faced with this challenge, I really did not know if we would or could succeed. But I knew if we didn't that at least my girls were given the chance to try!
Charlotte was by far more difficult to feed so I took her all day and night, while Robert fed Elizabeth. Each feeding felt like a race against the clock and we cheered the girls (and often pleaded with God) towards completion of the bottle. Many of the feeds were close calls. I even pushed it to the 35-40 minute mark twice. Elizabeth was a champ. She had to work hard, but she was fully capable of bottle feeding. Charlotte - although she succeeded - I had to admit there was a serious problem.
Saturday afternoon we met with the doctor to discuss how things had gone and possible discharge. She had seen the data - all bottle feeds - and confidently asked if we were ready to go home. It was then I had to admit that Charlotte was not fully ready. During every bottle she took she was having episodes where her oxygen levels dropped very low (60%) and would stay low for several minutes after each episode. It was very scary. It was at this meeting that we decided Elizabeth was ready to come home and Charlotte was not. We planned Elizabeth's discharge for Sunday. I knew it was the right decision, but I was overwhelmed and heartbroken at the idea of one of them home and the other still in the NICU.
Saturday evening and all day Sunday I worked with our awesome nurse. We determined that Charlotte had no issues at all with her oxygen levels while breast feeding. With that information we began feeding Charlotte her bottles in a side lying position. If we kept her in that position and regulated the flow of the feeding she was able to take a bottle successfully. Armed with this approach I pleaded to have Charlotte discharged with Elizabeth on Sunday night. I was told no.
So Sunday, January 11th, Elizabeth came "home" - through we did not actually take her home. Optimistic that Charlotte would be discharged in just one or two more days and not wanting me to have to run back and forth (80 miles) between the two of them we got a room at the Georgia Tech Hotel. We also could not bear the thought of Leland meeting just one of his sisters when he knew there were two.
Monday morning I was back at the hospital working with the feeding specialist on Charlotte's feeding. I could see she was skeptical about whether or not I could commit to the difficult task of Charlotte's feeding needs. She told me that Charlotte was an immature eater and that most babies at this point needed another two weeks in the NICU to develop further. I'll never really know, but I think her recommendation to the doctor was not to discharge her. Thankfully though, the doctor did agree to discharge her. At morning rounds she openly stated that she believed there was about a 60% chance that Charlotte would be readmitted but that she was willing to take that risk because studies show that babies really do better at home. And with that - the odds against us - she was discharged.
I called Robert and he loaded up the hotel room and Elizabeth to pick Charlotte and I up from the hospital. I loaded all of our stuff onto the cart. The cart that should have accompanied us 17 days earlier when I left the hospital without my babies. On it was a bag of clothing, blankets, my pump parts, my nursing stool, and my boppy pillow. It was piled rather high. As they wheeled us down the hall, through each of the security doors, and onto the elevator I fought back tears. We were really leaving. This place I had spent so many nights so ill prior to their arrival; the place they were born; the place I had come and gone and come and gone from so many times without them.
It was finally over. Finished. We were going home.
Saturday afternoon we met with the doctor to discuss how things had gone and possible discharge. She had seen the data - all bottle feeds - and confidently asked if we were ready to go home. It was then I had to admit that Charlotte was not fully ready. During every bottle she took she was having episodes where her oxygen levels dropped very low (60%) and would stay low for several minutes after each episode. It was very scary. It was at this meeting that we decided Elizabeth was ready to come home and Charlotte was not. We planned Elizabeth's discharge for Sunday. I knew it was the right decision, but I was overwhelmed and heartbroken at the idea of one of them home and the other still in the NICU.
Saturday evening and all day Sunday I worked with our awesome nurse. We determined that Charlotte had no issues at all with her oxygen levels while breast feeding. With that information we began feeding Charlotte her bottles in a side lying position. If we kept her in that position and regulated the flow of the feeding she was able to take a bottle successfully. Armed with this approach I pleaded to have Charlotte discharged with Elizabeth on Sunday night. I was told no.
So Sunday, January 11th, Elizabeth came "home" - through we did not actually take her home. Optimistic that Charlotte would be discharged in just one or two more days and not wanting me to have to run back and forth (80 miles) between the two of them we got a room at the Georgia Tech Hotel. We also could not bear the thought of Leland meeting just one of his sisters when he knew there were two.
Monday morning I was back at the hospital working with the feeding specialist on Charlotte's feeding. I could see she was skeptical about whether or not I could commit to the difficult task of Charlotte's feeding needs. She told me that Charlotte was an immature eater and that most babies at this point needed another two weeks in the NICU to develop further. I'll never really know, but I think her recommendation to the doctor was not to discharge her. Thankfully though, the doctor did agree to discharge her. At morning rounds she openly stated that she believed there was about a 60% chance that Charlotte would be readmitted but that she was willing to take that risk because studies show that babies really do better at home. And with that - the odds against us - she was discharged.
I called Robert and he loaded up the hotel room and Elizabeth to pick Charlotte and I up from the hospital. I loaded all of our stuff onto the cart. The cart that should have accompanied us 17 days earlier when I left the hospital without my babies. On it was a bag of clothing, blankets, my pump parts, my nursing stool, and my boppy pillow. It was piled rather high. As they wheeled us down the hall, through each of the security doors, and onto the elevator I fought back tears. We were really leaving. This place I had spent so many nights so ill prior to their arrival; the place they were born; the place I had come and gone and come and gone from so many times without them.
It was finally over. Finished. We were going home.
3 comments:
Your girls have great parents who advocated for them so well. Thanks for sharing. I'm glad you're all home and together now, the way it should be!
This post brings back so many memories for me, that endless waiting game, that one grumpy nurse, the feeling that the nurses just weren't trying to bottle-feed. It was very emotional to read. I had one nurse (who wasn't even assigned to C) show me some tricks for encouraging bottle feeds, and then I was the first one who managed to get her to finish one. I think once they knew she could do it, the nurses tried harder.
I'm so glad you were able to bring both your girls home at once (more or less), and that Charlotte has continued to grow and do well at home.
I agree with the above comment, this does bring back so many memories. Our days in the NICU were moments I will always remember. Some good, some bad, but definitely a journey we went through and came out the other side.
Beautiful post.
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