Gigi woke up a couple of Saturdays ago with a lot to tell me. I remember she was very chatty but didn’t seem to be feeling well. The rest of us had been battling a respiratory virus for the past week and it looked like she finally caught it too. Her eyes were glassy, she seemed tired and she had a temperature of over 101. She was also breathing fast, but I wasn’t sure if it was due to the fever. The doctor on call said give it a day and see how she does. She seemed to perk up after some Tylenol and a good nap and luckily Saturday night wasn’t too bad, but she woke up with a fever again Sunday so I took her to the doctor’s office. Long story short, her oxygen percentages were only around 92 so we were sent to the ER.
I had done an ER trip with Gigi before so this time I knew what to expect. It wasn’t as upsetting or nerve-wracking this time, and there were things I knew to do this time around, like grab myself some water and snacks from the vending machine in the garage because it could be a long afternoon. Doctors in the ER decided she had only the beginnings of bronchiolitis which gets worse on days 3-5 before it gets better so they decided to admit us to the 9th Floor of Boston Children’s Hospital where we would end up living for 12 all inclusive, fun-filled days.
The first night was awful. Gigi wasn’t feeling too sick at that point, but we had roommates. In fact, we went through 5 roommates during our stay. Rooming with other sick babies doesn’t help anyone get any rest to recover. Those first 2 days I wondered if we would have faired better being home with good sleep and better food. I don’t think she required much oxygen, if any, those first two days, but I can’t remember. During the 1st and 3rd night we had roommates that were infants with bronchiolitis. They were less than 2 months old. In both cases, it was decided by their medical team that they needed to be moved to a floor with a higher level of care. For some reason the med teams make these decisions late at night. There seems to be no day or night in the hospital. So we would be woken up from our light sleep by our roommates moving out, usually around 11pm. Then at midnight the cleaning person would come in and turn on all the lights and disinfect that side of the room. Then at 2 or 3am a new roommate would arrive. In between there were disturbances of alarms going off (roommate’s or Gigi’s), interventions needed like IV insertion or mucus suctioning, checking of vitals, and so on.
Every morning our med team, which consisted of 5 or 6 people ranging from medical student to pediatrician, would report on Gigi’s stats from overnight and discuss a plan for the day with my input. In summary, they were all right, she got worse before she got better. She went from periodic oxygen saturation monitoring to constant and required oxygen all day and night. I don’t think she was ever in any real danger, but the recovery just took FOREVER. And I couldn’t help but think of those moms I know whose baby with Down syndrome started off like this and ended up on a ventilator, or worse.
In addition to needing oxygen, the other issue was she needed an IV twice since she doesn’t take liquids from any cups or bottles. She needed more hydration than my body was used to making. The second time she needed IV was at 11pm at night. Like I said, the med team makes decisions at all hours of the day and night I guess. We were already sleeping but the nurse came in and woke us up so that Gigi could be tortured with an IV insertion.
Gigi’s recovery was in very teeny tiny baby steps. It took longer than most. Down syndrome had something to do with it because her low muscle tone made it difficult for her to expel the mucus from her lungs and her small nasal passages were getting clogged. The doctors kept reassuring me that it was normal, but at the same time we covered all bases by consulting with pulmonary specialists, getting a chest x-ray and getting an EKG. They also sent over feeding specialists to give me ideas on how to get her to drink from a cup. A lactation consultant also visited so that I could ask her questions regarding if and how I can increase my milk supply.
The doctors and nurses at Children’s are wonderful and thorough. Never did I say to myself ‘where is everyone? I’ve been in this room for hours and no one has come in.’ They LOVED Gigi; some would try to kiss her but she wouldn’t allow it. Most of the time she cried when they went near her. We definitely had some favorite nurses and our med student doctor, Ryan, was amazing and really took a liking to Gigi as well. He’s going to be a great doctor someday. She wanted nothing to do with them most of the time – the ‘yellow people’ as I called them who would come in with their yellow protective gowns and masks. We were considered contagious so they needed to wear protection. I felt like an ebola patient.
People asked me what I did all day and if I was bored and if I was dying to get out of there. There was a TV, but I hardly had it on. I was busy discussing things with nurses and taking care of Gigi. I had to entertain her most of the time she was awake, especially on the days where she was feeling better. When she napped I tried to nap. After I hit the hump on day 6 I got used to being there. I didn’t want to get out of there because she wasn’t well enough. When I was at the hospital a lot of my worry went away. I’d go to sleep and for a brief moment I’d worry about how she’d be during the night, and then I realized that machines were monitoring her and nurses were watching and I didn’t have to worry about it. At home, it’s just me that needs to decide if there is a problem and there are no doctors easily available to consult with.
Gigi’s big sisters visited a few times and they enjoyed spending time with me out of the room looking at the fun things in the hospital.
When Gigi was feeling better it became hard to contain her in such a small space. She had ants in her pants. She wanted me to put her on the floor so s
he could scoot around. There was no way that was happening! One of her favorite things to do was sort through a bin of medical supplies and throw them over the side of the crib. Then she would laugh when I had to pick them all up. She would pull at her wires and pull off the sensors on her toe sounding the alarms.
In the end the last thing that we were waiting for to resolve was her requiring extra oxygen at night, which is usually the last to resolve itself. We were toying with the idea of going home and using oxygen at night, but I’m glad we waited it out because I would not have wanted to deal with oxygen tanks and nasal cannulas at home and on the go in the event she was to fall asleep in her car seat.
Yesterday morning was our first morning back at home. Gigi smiled so much at her sisters which made me realize how little she smiled at the hospital being confined to a crib or my pull out bed. At the same time, yesterday morning was hard for me to transition away from having nurses and doctors at my disposal, but she seems to be doing well recovering at home.
Some neat things that happened in the hospital…
- I may have found a babysitter as one of our favorite nurses lives a few blocks away from us and she said she wants to babysit.
- I met a mom from my DSDN Facebook group who flew in from Minnesota for her daughter’s heart surgery.
- Our 5th roommate, Louis, was with us for 6 nights, was 4 days younger than Gigi and also has Down syndrome. His parents and I got along well. Gigi and Louis were separated by a curtain but on the 5th day when they were each sitting in their crib we opened the curtain. Louis waved at Gigi and did a little dance. Gigi looked at him like ‘who the hell are you?’
- A few moms in my Facebook group were also in the hospital with their little ones, so we would connect on line at night and chat. I definitely found comfort in that.
- The stay at the hospital may have trained Gigi to sleep in a crib instead of our bed.
- Gigi signed the word ‘milk’ to me and improved her rolling skills since she couldn’t butt-scoot on the floor.
- Gigi perfected her imitating skills by pretending to eat chips, or something, out of a bag whenever I gave her a bag to play with. I guess mom did a lot of snacking at the hospital.
- So many friends were there to pitch in and help whether it was taking the older girls after school, bringing dinner, giving gift cards, etc.
I really, really hope that’s it for Gigi being sick and in the hospital. Unfortunately we have at least 2 more months of cold and flu season. I guess we’re just going to have to be overly cautious during this time of year at least for the next few years until she gets bigger and can handle illnesses better.