What an exciting couple of days we’ve had!
Leah was released from the hospital on Wednesday in the late afternoon. Before we took Leah back to Ronald McDonald House (a.k.a. “Home-ish”), we strapped her into the stroller for the first time so that we could embark on the requisite Baby Parade to PICU and NICU, where all of her nursie friends on shift at the time came out to say goodbye to the little Empress. They were very different parades; in PICU it was very much a goodbye as we didn’t really get a chance to say goodbye to everyone when we left last Friday. Every time we were just about to exit the unit, another nurse came running to catch us and say goodbye before we left. The farewell in NICU was more of a little reunion, since Leah hadn’t seen most of her nursie friends there since she left in August (with a few PICU-floating exceptions). Everybody was very impressed at our little chubby bunny; she’s definitely grown a lot since she went off to college (PIC University).
I should probably add that Leah did NOT enjoy her first experience being packed up into the stroller. By the time she got to PICU (all of about five minutes later) she was fast asleep. We really wore her out.
After the Baby Parade, our cousins Beth, Brian and Erin helped us haul a boatload of stuff down to the car along with the Empress herself. We’ve been moving stuff back to RMH gradually but totally underestimated the amount of stuff we still had in the hospital room, although to be fair, a significant portion of that was medical stuff. This kid travels with an oxygen tank twice her size. While Mandy and the gang went to load up the car, I trekked to the pharmacy, where I blew through a good $100 on her first set of prescriptions. One of the prescriptions (for which I actually had to go back later that night because of a logistical mixup, so this is technically a fast-forward) nearly caused a Mama-heart-attack when the pharmacy guy told me it was going to be $176. For a 15-day supply. We went back and forth on the issue for a good several minutes with me convinced this couldn’t be right and the guy insisting that he had checked and double-checked and even put in a pharmacy exemption and that’s just how it came out. I was just about to give up and pay it when the other pharmacy lady stepped in and said, “Let me see.” It turned out something was mixed up in the computer. A few minutes later she asked if I would prefer a $5 copay. Um. Yes, please. Heart attack averted!
SO. Rewind back to our departure from the hospital… after we got everything unloaded from the car and hauled up to the room, we went downstairs and celebrated the first night of Chanukah with our little girl and our cousins. Really, what happened is that our cousins brought Chanukah to us. They brought latkes (sweet potato AND regular) and sour cream (we had applesauce here), cookies, and presents! Yay! They really made it feel like Chanukah, which is pretty impressive under the circumstances. And Ronald McDonald House had set out jelly donuts for the occasion, which made the meal complete. (Once you’re about 23 or older, Chanukah is an 8-day stomach ache!) Thank you for help and Chanukah, Beth, Brian and Erin! We closed the evening with a shehekheyanu in front of RMH’s electric chanukiyah. What an awesome welcome home-ish!
The first night was pretty uneventful, which is about the best thing we could ask for. Neither of us slept very well, since we got to bed pretty late and then woke up a bunch of times to make sure the kid was still breathing. I’m still sleeping with one ear open and if I wake up I can’t get back to sleep until I can hear her little snore.
Thursday was a whole new day for first-time baby experiences! We continued to adjust to her very complicated schedule, which involves multiple medications in different (ridiculously small and precise) amounts that we have to measure, as well as a nebulizer treatment every 12 hours and a continuous feed that has to be maintained on the feeding pump. After we got through the morning routine, we took Leah downstairs, where she got to meet some of the folks who have been hearing about her all summer, including a couple of the families and also the RMH front-desk employee, who is the same very sweet girl who was there to check us in and show us around when we first arrived at RMH. We were especially excited to introduce Leah to her since we’ve been showing her pictures (and adorable tiny dresses) for months!
After the morning visits (and multiple loads of laundry), Leah got her first long car ride out to Aunti Staci’s house, where we celebrated Thanksgiving with the family, including my parents (and sister, Aunti Staci), Mandy’s mom and brother, my grandma and grandpa, my other grandpa, and one of Staci’s friends. Also present were two jailbreaking felines who managed to open the door to the back hallway, regretted their escape from the bedroom every time and fled back to safety, and yet inexplicably kept repeating the process. I do love cats, but sometimes they don’t think things through, especially when turkey is involved.
For her part, Leah had a pretty overwhelming Thanksgiving day. There was a good stretch of time in the middle of the evening during which she could not be consoled, and needed to be taken to a quiet, dark room and rocked and bounced to sleep. We think it was a combination of our having spilled a tiny drop of the methadone dose and just the simple fact that everybody wanted to see the baby and it was probably pretty freaking overwhelming for her. She had tried to take a nap earlier but couldn’t seem to drift off. By the end of the evening she was feeling a little bit more social again. Very few people actually got to hold her, but that’s probably for the best since fewer arms = fewer germs.
We are very grateful that Leah was able to celebrate her first Thanksgiving with her three grandparents and three great-grandparents as well as the other folks present. Aunti Staci did a beautiful job of combining yummylicious and healthy. Who knew she could cook? I need the recipe for the butternut squash, Aunti Staci!!!! And I was SO FREAKING GRATEFUL that I was able to EAT. I definitely didn’t eat as much as I would have on any other Thanksgiving, but I definitely felt that traditional sensation of needing to be rolled out to the car. Ha. Aunti Staci even made a pumpkin pie from SCRATCH – and she doesn’t even like pumpkin pie! What a good sister! She had also made hand-whipped cream for the pie, but a certain feline dipped an entire paw into the mixture, so it was no longer fit for human consumption, although I’m sure the cat enjoyed his portion.
Today we got that first trip to the emergency room out of the way. It had to happen eventually, right? Aunti Staci picked me up to take me to an appointment out in Pasadena and then run some errands. As soon as my appointment was over, I got a call from Mandy – Leah’s g-tube had fallen out! Her nurse practitioner did say it would happen on a holiday weekend when nobody was around, didn’t she? I guess she knows how it works! Mandy had grabbed the first thing she could find to replace the button, and it turned out to be the Mic-Key button. I’m not sure why we still had it, but the docs had kept it with her other medical supplies so it was there. Once Mandy got me on the phone, I directed her to the spare Mini One and told her what the RNP had told me to do. Then she called the advice nurse to find out whether she should take Leah to the ER to be checked out by the surgical residents. The nurse was going to try to help her avoid the ER, but it turned out the only person who could look at the g-tube without an ER visit doesn’t see babies. So the ER had to happen, turning this into an expensive little misadventure. They did a quick contrast study and everything looked good, so yay for that.
Then, we got our first major equipment screw-up out of the way. Mandy noticed this afternoon that Leah’s oxygen tank was getting pretty low. We had been informed that the medical equipment company would send a bunch of tanks to the house and had planned to have a family member drive some up this week to avoid confusion with delivery addresses. However, the tanks never showed up. When I called this afternoon I was informed that no oxygen had been ordered, but since it was oxygen (i.e. a critical device) they could arrange for a tank to be sent to our home to hold us over. At the time I thought she had enough to get through the night so I figured Mandy’s brother could get the tank in the morning and drive it up to us at RMH after work. So I said to go ahead and deliver to our home. Then I called Kaiser’s DME department to find out why no oxygen had been ordered – and they told me there was no prescription for it! OY VEY! Apparently what happened is that there *was* a prescription for it on Monday, but when Leah was not discharged they cancelled the prescription because they didn’t know when she would be released. And when Leah was discharged on Wednesday, apparently nobody reinstated the prescription. So it never got processed, and the multiple tanks never got delivered, so nobody every got to bring us the spare tanks, and on top of all of that, by 9:30PM the holdover tank had not been delivered either. I called the medical equipment company and oh hai, they had no delivery scheduled for an oxygen tank. Well gosh. Thankfully, the lady on the phone was able to reach the on-call technician and they are going to make a delivery to RMH tonight so that we will have enough oxygen to get Leah through the weekend while we sort out this whole mess. This must not have been a full tank; we only started it Wednesday night. It seems like it should have lasted us more than 48 hours. UPDATE – The after-hours tech just delivered two tanks of oxygen and as it turns out, no, these things shouldn’t really last more than about 48 hours. Maybe really only 36 – they’re meant for portability. Great to know. They also didn’t show us how to change the gauge, another thing the tech showed me when he delivered the tanks.
SO. Our first 48 hours out of the hospital has been generally uneventful, and the frustrations we did experience were relatively tolerable as frustrations go. Someone please knock on wood.
And now, what you’ve really been waiting for: PICTURES!