We were transferred from Children's to HSC on Friday afternoon, October 11 by ambulance. As I walked into the wing my heart dropped. The facility seemed old. Our room was right near the entrance wing and it had 2 HUGE windows- one in the wall which I discovered I could cover with a curtain, the other on the door, with no way to cover. My needed privacy for breastfeeding was gone. There were two cribs in the room and I feared a roommate. The charge nurse was male and I did not want to have to cover up to nurse. I didn't see a bathroom from where I stood. And worst of all, I did not sense the same competence I had come to expect from the nurses at Children's. I was alone, in a new place, with no privacy, with people I didn't trust. As soon as everyone left the room I broke down in tears. The social worker found me like that, but I didn't feel like talking so I blamed it on being overwhelmed.
Things weren't as bad as I first thought. The staff informed me that Luca would not have a roommate and then allowed me to rearrange the room to my liking. We pulled the bed between the two cribs and I usually nursed there where I was hidden. They also put a sign on my door asking people to knock before entering so I'd have some warning to cover up. Hidden around a corner was a bathroom with a shower just for us. And all but one of our nurses were female, so I didn't have to worry about that either. And the food was cheaper- when I could make it to the cafeteria in the small window of time it was open.
Kaylon and the girls came to visit on weekends- replenishing my wardrobe and giving me some company, even if it was just a couple hours. They all seemed to grow in that small amount of time. I felt bad for Kaylon who was missing so much of Luca's life and let him snuggle his son as much as possible while I cuddled the girls and listened to their stories.
Weekdays were long and monotonous: lots of TV, facebook, and reading. Lucky for me I had two books come out that I had preordered on my Nook, so I got to read those without guilt. Luca continued to improve and gain at least an ounce a day. He freaked all the nurses out with his angry, which he used pretty much every time I changed his diaper since he had a rash from the antibiotics. Seriously they'd run in with this look on their face like they expected me to be beating him. And then over his screams I would explain that, no, I was just changing him. At least once a day, no lie. Our big excitement came on Friday when we got transferred to Children's for a few more tests to make sure everything was progressing as expected. His head u/s was perfect and his VCOG (where they take lots of xrays while he is urinating to see if there is backflow) showed a slight problem, but not big enough to correct surgery. This could have been the cause of the infection- no one will ever know- but most likely it will correct it self completely over time. That same day the infectious disease doctor okayed us going home Saturday night after his last dose at 8pm.
At his noon dose I noticed his bandage was wet, but I assumed it was from him spitting up. When it happened again at 8pm, I mentioned it to his nurse. She said they would check it when they took it out. Kaylon arrived as they were about to pull out the central line. We decided to step out since Kaylon gets queesy and I was tired of watching him cry. The nurse almost immediately came back out to get us. The doctor informed us that the line had broken at the juncture with the plastic piece that was stitched to his arm. An xray confirmed what I knew in my heart, even as the doctor told me was a small chance of happening: the line was still in his arm and it would have to be removed by doctors at Children's. I burst into tears.
Kaylon followed the NICU ambulance back to the hospital. This time I did not get to ride in the back. Because he was still less than 4 kilos he was in an isolette; because of the PICC line in a vein to his heart he was back on the monitors. We were in the ER for a few hours till we learned that again the HSC doctor had been wrong- no team was ready for us at the hospital and we would have to be admitted again. I sent Kaylon home to relieve the babysitter and Luca and I got a room on the 4th floor (short stay patients).
In hopes that Luca could get the procedure first thing in the morning, they asked me to stop nursing him at 4am. Unlike the morning when they put the line in, they did not get to him right away. That was one of the hardest days of the whole experience as I sat there next to him, unable to hold him knowing that he would smell the milk and start to cry. I kept giving him his sugar water dipped pacifier and miraculously he slept most of the day. They did another xray and u/s to make sure the line had not moved. And then finally a surgeon came to the room to discuss options and get consent. At 4pm- 12 hours without food- Luca went under general anesthesia while I, and our whole family prayed. They had warned me that it could take up to 2 hours, so I headed to the cafeteria to get food while I could. When I came back to the waiting room a doctor came out immediately to tell me that it was over in record time and all was well- he compared it to taking a splinter out of a finger it was so easy. When he had recovered enough they let me back to hold him- what a relief it was to see with my own eyes that he really was ok!
They let me nurse him when he finally woke up, but he threw most of it back up- which they told me was normal. After seeing that side effect along with his drowsiness, I decided to stay the night instead of trying to break out that night. So we settled in for the night back upstairs and got a fairly good night's sleep. They released us as soon as Kaylon and the girls arrived. We were finally, after 15 days in the hospital, going home!
I am so grateful for all the people who helped us through- great nurses and doctors of course, but also those who watched my children, filled in for our church callings, and prayed for us. It was an awful two weeks, but in the end I got to bring my boy home, and I know not everyone gets to do that. Luca is healthy now and I will forever be grateful to my Heavenly Father for that.
So glad he got to come home okay! What an experience!
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