Want to hear something crazy? In two and a half weeks, Adelaide will be ONE. ONE YEAR OLD. How time flies... it's so weird to think that only eleven months ago we were in such a different place.
At the end of my last entry, I left off with telling you how the Central DuPage Hospital chaplain blessed Adelaide while she was in the NICU awaiting transport to Childrens. After her blessing, Brian and I got to spend some time with her. We held her little hands, talked to her, and got to know the CMH transport team a bit. They were an amazing group of people - I think there were four of them - and they described exactly what they were going to do as they transported her to Childrens. Of course, most of what they described went right over our heads, but they were very nice and we were reassured that Adelaide would be in good hands for the ride to Childrens. I don't know exactly how long we stayed down in the NICU, but eventually it was time for them to take Adelaide to Childrens, so we said our "see you laters" and left before they took her away. I didn't want to see them taking her, so I thought it would be easier if we left first... though it certainly wasn't easy.
Once we got back up to my room, Michie (one of my favorite nurses from CDH) came in and gave Brian and me both huge hugs. I cried on her shoulder for awhile, and then she left to go get a breast pump for me and made me order breakfast. (I remember very specifically that I ordered pancakes, scrambled eggs, and turkey sausage... and then I couldn't eat any of it.) Anyway, I won't go into detail about the breast pump, but let me just say I am INFINITELY grateful for Michie and the fact that she basically bossed me around that morning... in a very nice way of course, but I needed her direction because I had no idea what to do. She told me she was going to bring up a breast pump so I could start pumping and save milk for Adelaide. She let me know that they would keep it at CMH and give it to Adelaide whenever they could, though possibly not until after her surgery. So, with her direction, I started pumping that morning. I cried the entire time. Compared to breastfeeding my baby girl, pumping felt so impersonal - so unfamiliar, so unnatural. As I sat there, I just couldn't stop crying and I missed Adelaide so much. Looking back now, I realize that I should have looked at pumping as something I could do for my baby girl while I was otherwise feeling so helpless - and eventually, that IS how I looked at it - but the first few times were just horribly, horribly depressing. I felt empty, alone, scared, and physically like my body was being taken over by something beyond my control. (Which honestly, it kind of was.)
After a few pumping sessions, a few bites of food, and a LOT of tears, Brian and I managed to finish packing up my hospital room and got ready to leave. Before we left the hospital, we both got the TDAP vaccine... it was something we were both planning to do anyway, but especially given the scary turn of events, we both wanted to do everything possible to keep ourselves and Adelaide healthy.
After I was discharged, Brian went to get the car and I sat on a bench in the lobby of the hospital. I saw a few people come in carrying pink "congratulations!" balloons, and I of course started crying again. Once Brian pulled the car around, I got in and carefully put the seatbelt across my lap, and we drove home.
Walking into the house without Adelaide was sad (understatement), but as soon as we got home we busied ourselves getting ready to head into the city to visit her. Brian started packing overnight bags, and I made some phone calls to tell our close friends what was going on. Early in the morning, we had called our parents and siblings and a few friends, but we hadn't been able to call everyone before I was discharged. Surprisingly, I made it through most of the phone calls without totally losing it... I got chocked up a few times, but I think because I was preparing myself for other people's reactions, I wanted to sound positive and not scare people too much - even though I was so, SO scared. I tried to focus on the great reputation of Childrens Memorial Hospital, and tried to sound optimistic when telling people what was wrong, and I think doing that helped me feel a tiny bit better about things. My good friend Melissa happened to be at a conference not too far from CMH that day, so when I called her, she offered to meet us at the hospital if we were up for company. I told her that would be great, and told her I'd call when we were close to the hospital.
After we got ready, we headed out to the hospital. We had to stop at Target to pick up a prescription for me (pain meds - C-section recovery = NOT fun) and a few other random things. I got an iced coffee from Starbucks, and I remember thinking I would have enjoyed my first post-pregnancy "full-strength" coffee more had the circumstances been different. However, it was still pretty tasty.
I kept crying off and on as we drove to the hospital, and Brian was doing a good job of keeping it together... but I very specifically remember that as we were getting off of 290 and on the 90/94 ramp, he broke down. He started crying and asking, "Why? Why did this happen? She's so small... she's so small." As soon as he started crying I suddenly stopped and focused on trying to get him to calm down a bit... for one, because I hated seeing him so upset and scared, but also, he was driving and I was a little nervous. I asked him if he needed to pull over, but he said no, and that he just wanted to get there as soon as possible. Don't worry, he didn't speed or drive recklessly, and somehow he took a deep breath and was able to focus on driving and we made it to CMH safely.
When we walked into the hospital lobby, we checked in and immediately saw Melissa. I ran over to her and she gave both of us hugs, and we all started crying. After a few minutes, we headed upstairs to the 8th floor - the NICU. We were greeted by a receptionist who asked us to sign in and gave me & Brian "NICU Parent" hospital bracelets. Then the three of us headed back to Adelaide's "pod" - the rooms in the NICU housed 8 babies each, split into two pods of 4 patients. We had to go through an extensive scrub-in process (which soon became second nature)... wash hands and thoroughly dry them, then clean out under your fingernails with a plastic pick. Next, the Avagard - a pretty intense hand sanitizer - put one pump all over one of your hands and up to the elbow, making sure to focus on the nail beds and under the nails. Repeat with other hand.
After scrubbing in, we got to see Adelaide. I was relieved to see that she still looked normal. She was hooked up to a bunch of different machines/monitors and had a few IVs in, but overall, she still looked like Adelaide. We met one of her nurses, who gave us an update on how Adelaide's day had been. She basically said that aside from her critical heart condition, she was looking pretty good. (This would be the "norm" for Adelaide, for the most part, throughout her hospital stay... even during her more worrisome days, she usually looked as good as she possibly could, all things considered.)
The nurse reassured us that we would be able to hold Adelaide the next day, and told us that we didn't have to adhere to visiting hours of the hospital - as parents, we could come see Adelaide anytime. However, she did encourage us not to stay TOO late and to try to get some sleep that night, since the next day we would likely meet with a crap-ton of doctors and nurses who would brief us on what to expect for Adelaide in the coming week.
I don't remember exactly what time we left, but eventually we did leave the NICU and headed to Pete's apartment. Pete, my sister Christie's then-boyfriend-now-fiance, lives approximately one mile from CMH... and we are SO grateful for the fact that he opened his door to us while Adelaide was in the hospital. When we got there, we chatted with Christie and Pete for awhile and then tried to get some sleep.
Let me just take a minute to say that trying to sleep that night was pretty impossible. Every time I would start to doze off, my alarm would go off reminding me to pump. (Every three hours!) Or, my alarm would go off to remind me to take my pain medicine. (If I forgot a dose, oh, it was horrible.) Or, I'd start to get tired and then my brain would start going crazy with everything that was going on. Or, I'd just start crying and crying. So among all of those things, I really didn't get much sleep.
In the morning, Christie made us breakfast - toast and eggs - and she made coffee, too. I found that even though I didn't think I would have an appetite, I was actually able to eat and was pretty hungry... which was good, because I needed to make sure I was eating enough and drinking enough water so I could keep pumping.
After we ate, Brian and I headed to CMH. We scrubbed into the NICU, met the nurse for the day, and were able to hold Adelaide!
I wasn't sure what to expect when the nurse asked if I wanted to hold Adelaide - when she asked, I said, "Are you sure I can?" because I wasn't sure how it would physically work. The nurse reassured me that I could most certainly hold my baby and said that most of the wires/IV lines would be contained within the swaddle (blanket) Adelaide was wrapped in... aside from making sure she was close enough to her bed so the wires wouldn't get pulled too tight, there wasn't really anything to worry about. So, I sat down in a chair next to Adelaide's bed and the nurse put her into my arms.
I don't know if there is any way I can possibly put into words what it felt like to hold Adelaide for the first time after she was transported to CMH... I felt relief that she still looked okay, terror that she was so sick despite the fact that she looked "normal," sadness that I was in the setting I was in with her, nostalgia for "the past" (even though "the past" was just a few days ago), and fear that it was going to be the last time I'd ever get to hold her. I think I held her for over an hour, during which one of the cardiac fellows came in to talk to us more about HLHS. Her name was Dr. Perkins, and she brought in a diagram of a hypoplastic left heart syndrom heart. She then explained the physiology of HLHS and went over the surgical reconstruction process with us. We had heard the same information from Dr. Kumar while we were still at Central DuPage Hospital, but hearing it again helped us feel a little bit more familiar with HLHS... as familiar as new parents with a 5-day old baby could feel, anyway.
Quick side note about Dr. Perkins, by the way... MONTHS later, at the end of March, we attended our dear friends Jenn & James' wedding and met their friend Wally. Turns out, Wally is good friends with Dr. Perkins! Such a small world.
Anyway... back to the story. After Dr. Perkins talked with us, one of the cardiac nurse practitioners, Page, came to the NICU to talk with us. She explained that we were going to meet with Dr. Backer, the surgeon who would do Adelaide's Norwood procedure in a few days. She told us that he would give us more details about the surgery and answer any questions we had. Before we went down to see him, she explained that after our meeting with him, we would be asked to sign some consent forms for the upcoming surgery... permission to give Adelaide a blood transfusion if she needed it, permission to put her on ECMO if it was necessary (that one freaked us out). When it came time to sign the forms, we read and signed those two, and I remember that Brian asked Page, "Do parents really NOT sign these?" To us, it seemed simple - give the doctors permission to do whatever it took to save our daughter's life. There was one consent form asking us if we would allow Adelaide to be part of a research study where they would give her an extra something-or-other medicine at some point... we declined that, because there were no proven good effects to it and we didn't want to risk interfering with her surgery/recovery/etc.
We went down to see Dr. Backer in his office, and he explained the three different approaches to treating HLHS. The first was a three-step surgical/pallative approach that reconstructed the heart so the right ventricle could ultimately function for both the right and the (missing) left. The second was transplant, and he explained that this option was not very often encouraged instead of the three-step surgical approach, due to the small number of donor hearts available for infants. The third was compassionate care - where parents choose to bring their baby home and keep them as comfortable as possible until they pass. We knew that compassionate care was NOT an option for us, and based on Dr. Backer's evaluation of Adelaide's current physical condition and the fact that he thought her to be a good candidate for the Norwood procedure (first step in the 3-step surgical approach), confirmed that we would like to move ahead with the Norwood.
After we met with Dr. Backer, we spent the rest of the day in the NICU with Adelaide. We took turns holding her and took LOTS of pictures. We hadn't taken many pictures the day before, I think because we were both a little afraid of the whole situation and I know for me, I originally thought, "Do I want pictures of her attached to all these machines?" But as soon as we had left the hospital that night, I missed her face so much and I knew I would be taking pictures of her every day from now on - regardless of how many machines she was hooked up to. So, we took pictures and cuddled with our little girl until it was time to go home. This is one of my favorite pictures from that day:
After spending the day with Adelaide, we decided to go back home and to spend the next day at home as well... I was still recovering from the c-section and there wasn't anything "big" planned for Adelaide the next day, so we thought it would be best to try to rest as much as possible before the end of the week. Her surgery was scheduled for Friday, so we figured we would spend Wednesday and Wednesday night at home and go back to see her on Thursday. The NICU nurses told us we could call any time of day to check on her, and they promised that someone would call us if there were any updates or changes with Adelaide. So, after a lot of finger squeezes, foot tickles, and kisses, we said good night to Adelaide and headed home.
The next day, we tried to get a few things done around the house - unpacking, laundry, re-packing. I can't count the number of times I went into her nursery and just stood there, though. We had a package of Pampers swaddlers from CDH that was opened, and this might sound silly, but I kept just smelling it and crying. Literally, I would pick up the package of diapers, stick my face in it, inhale, and bawl my eyes out. When we were at CDH, Adelaide wore the swaddlers, and that's what she smelled like... so I couldn't get enough of it. And of course, it made me sad that she wasn't at home with us.
That afternoon, my phone rang... it was the hospital. We had called earlier to check on her a few times, and one of the fellows had called us with a question, so we weren't sure what to expect when the phone rang again. Unfortunately, it was one of the fellows again, telling us that Adelaide's bloodwork had shown an infection and that they might have to postpone her surgery because of it. She said she was doing well otherwise and was still stable, but that they wouldn't be able to do the Norwood until the infection was gone. The fellow told us that they were going to start some general antibiotics until they could narrow down the cause of the infection, and once they did that they could more specifically target the infection. She said that they suspected the infection might have been a result of the IV that Adelaide had in her belly button, but they weren't 100% sure. We asked her to keep us posted and she said that of course they would. After we hung up with her, I remember freaking out - of course after deciding to stay home for the day, something like this would happen... as if it weren't hard enough to leave Adelaide for the day - now we were getting news of an infection?!
We decided to stay home overnight again, and called the hospital a few more times... thankfully there were no scary updates and Adelaide was still doing well. Though we didn't sleep well that night, we at least got SOME sleep and rested up for the next day ahead. We knew that once we returned to the hospital we would be in for a barrage of updates and hopefully some more information about the darn infection and what it meant for Adelaide, her surgery, and the days ahead...
