Wednesday, July 30, 2014

We're Home!

E.J. and I are home from the hospital! We were discharged Monday morning and we are so excited to be back home and together with Eric and Ellie as a family of four again.

That was a long two weeks in the hospital, but well worth it because E.J. is healthy as can be now. His fever broke the Thursday after we first went in (July 17), and he was fever-free for the rest of his stay. They continued to give him the full dose of antibiotics for 14 days, and usually at the end of all that they would do a CT scan or MRI to check for any damage the illness may have done to the brain. However, in E.J.'s case, because he was fever-free for as long as he was and never had seizures or anything to indicate possible problems in the brain, they didn't see the need to subject him to unnecessary radiation. So, no scan necessary, just instructions to follow up with our pediatrician in a few days!

E.J. was a rock star through the whole thing. He was such a trooper. He was subjected to so much - blood draws, catheter, spinal tap, a couple of different x-rays, nasal swab, respiratory testing, IVs (including many, many failed attempts to get one in), a PICC line (peripherally inserted central catheter), shots, constantly-beeping monitors, and of course, endless poking and prodding by doctors and nurses alike. He was so brave, though. The nurses even said he didn't cry at all when they inserted his PICC line, only when they removed the tape that was restraining his arm. Everyone gushed over how good and sweet and brave he was. I am one proud mama.

A superhero Band-Aid for one superhero baby

It was so, so hard to watch my brand new baby be subjected to all of that, though, and E.J. was the recipient of many a tearful apology from me. I hated that he had to go through all of that, and that I couldn't protect him from his illness or the whole ordeal, and I couldn't make it stop. The guilt was strong (presumably only amplified by the fact that I was still less than two weeks postpartum and on a hormonal rollercoaster anyway) - as a parent, you know you won't always be able to protect your child from hurt and illness and difficult situations. But, you at least hope you can make it two weeks, right? Here he was, less than two weeks old, going through such an ordeal. I felt horrible and I just wanted to take it all away for him.

But really, things got better as the stay went on. After E.J.'s fever broke we were able to stop worrying a bit, and finally getting a diagnosis was a relief (even if it was essentially a diagnosis of "we don't really know what this is, so we'll just call it something and get on with our lives"). Things were still crazy though, just by nature of being in the hospital. I complained a lot about hardly having a moment's peace, because people were constantly in and out of our room:

  • The techs came by every four hours to check E.J.'s temperature. That meant every four hours, the poor kid was being woken up by a thermometer up his butt. Yes, even at 4:00 a.m. Fun for everyone!
  • The techs also checked his blood pressure every morning and weighed him every night.
  • The nurses came in to check him at every change of shift and generally checked on us throughout the day.
  • The nurses also came by to administer his medication every six hours. He received two antibiotics in each dose, both by IV. Each took a half hour to administer. So, around 12:00 a.m./p.m. or 6:00 a.m./p.m., the nurse would come in, flush his PICC line, hook him up to the IV and start the first medication. A half hour later (after the IV started beeping SO LOUDLY), she would come back and change out the syringe to start the next medication. A half hour after that (and more beeping), she would return, flush his line again and unhook him. Repeat the process again in six hours.
  • He was checked on by at least two doctors every day: the primary pediatrician and a resident. In the peak of craziness, he was also visited by many other doctors.
  • Aside from all the medical checks, the Food & Nutrition people came by six times each day for my meals (drop off/pick up a tray for each meal). We were also regularly visited by the "Wolfie Wagon" selling snacks and gifts, cleaning crew, and various other professionals: financial assistance, safety checks, etc.
E.J. hooked up to his IV for a dose of his meds

As E.J.'s condition improved things did get a little better - first, they removed all his monitors so I was finally able to hold him and snuggle him without fear of disconnecting any wires (which meant loud, incessant, stressful beeping every time I tried to hold my child). Then, we were able to talk them down to just checking his temperature every eight hours instead of every four. By the end of our stay, the techs had pretty much learned that if he was sleeping, I would refuse the check regardless, and they were okay with that. Just let the poor kid sleep already! The doctor visits slowed down (though we still saw two doctors every morning), and when they did come by it was generally just a quick, "Hey, is he still doing okay? Great. Any questions? No? Well, just keep on keeping on, then." But, even with the decreased monitoring/disruptions, you better believe I was happy to get home and away from all the commotion.

I was also just glad to get home and no longer have to track everything. I had to write down every single one of E.J.'s feeds on a white board: what time he started eating and for how long. I also had to save all his dirty diapers and put them on a scale to be weighed to track his output. Neither of these are huge inconveniences, of course, but by the end of two weeks I was really ready to just do my thing: feed him when he was hungry without people hounding me for details, and throw his dirty diapers in the trash like a normal person.

My nerdy math teacher husband had some fun with my feeding log

One thing that was kind of surprising to me was how respectful of our privacy the staff was when it came to breastfeeding. Unnecessarily so, actually, in my opinion. If anyone came in and I was feeding him, they'd very sheepishly apologize and say they'd come back later. Or, they'd ask if it was okay if they were in there while I fed him, or ask if I wanted the blinds on our door closed while he ate, etc. I appreciated their discretion but at the same time, if I can't feel at ease feeding my newborn in a children's hospital, where can I? But I guess I was just used to the atmosphere in labor and delivery, and this was different. Regardless, I was surprised.

As for how we spent the rest of our time, I was able to get some work done on a number of projects: obviously, blogging; baby books; thank you notes; cross-stitching E.J.'s Christmas stocking. I also had lots of visits from Ellie and Eric, who tried to come visit us at least once every day. Ellie really was a tremendously good sport through the whole thing, and would even ask to come see Mama and E.J. every day. She loved to play in the hospital playroom (especially with a toy train that had Dumbo, Simba and a 101 Dalmatian figures to ride on it), and she ate a lot of her meals in our hospital room while watching trusty old PBS programming. She was so good, in fact, that by the end of our stay, night nurse Heidi gave her a Cinderella doll as a "prize" for being so great.

Ellie loved these crayon statues at the entrance to the hospital

Saying hi to E.J.!

Eric and E.J. watching the British Open (E.J.'s first major!) together

Ellie playing while E.J. gets his meds

Checking E.J. out with her new stethoscope the doctor gave her

Showing off her hard-earned Cinderella doll!

While we were "on the inside," I also celebrated my 32nd birthday. It wasn't much of a full-out celebration, but it was just fine. Eric brought up some dinner the night before, and on my actual birthday he helped Ellie make a picture for me at storytime. He and Ellie came up to visit that evening and we had pizza (and delicious cake!) for dinner, and during the day I received some lovely flowers and cards from friends and family. The nurses also brought me a cupcake! That was also E.J.'s first monitor-free day (a wireless baby is a great birthday present!), and that day marked the halfway point in our stay. So, not too shabby!

Kicking off my birthday: wireless baby, a monitor that is NOT beeping incessantly, and another day crossed off on my countdown!

Hospital birthday breakfast with my handsome date

Beautiful flowers!

So many cards!

Cupcake from the nurses

The monster picture Ellie made for me hanging on my wall (along with some other family pictures I hung to spruce the place up!)

With my family on my birthday!

In addition to my mom's visit that I mentioned in my first hospital-related post, we also had visits from Eric's siblings. Kelley stopped by on the 21st with a friend on her way back home from a conference in Chicago, and Ronnie, Stephanie and Charlie came up over the weekend. E.J. was able to meet his aunts and uncle, Ellie was able to play with cousin Charlie, and having guests at our house enabled Eric to come hang out with me in the evenings after Ellie went to bed. Big thanks to all of them for allowing me that extra company!

Ellie and Aunt Kelley by the crayons

E.J. meeting his auntie

The W. brothers and their kiddos (well, two of the three!)

E.J. loved Uncle Ronnie!

Clean cousins!

I also have to mention how incredible Eric was during this whole thing. I mean, not that I would have expected anything different, but he was really something. He single-handedly took over all of Ellie's care, including taking her to storytimes and park hops and that sort of thing. He grocery shopped. He cooked. He cleaned. He even did Ellie's hair. All that while also shuttling the both of them back and forth to the hospital once or twice every day, and trying to be there to be involved in E.J.'s care as well as a support for me. During this time he has also been dealing tirelessly with E.J.'s insurance, to try to get that squared away, and has been working on finding movers for our upcoming move. He has been fantastic. On the one hand, I was so bummed this happened now because we had so been looking forward to spending six weeks together as a family of four before Eric went back to work, and I hated that we got cheated out of that. BUT, thank heavens for Eric being home this summer. God bless teachers' schedules, because I don't know how we would have done this if he was still in law. Thanks to Eric, I was able to just stay at the hospital with E.J. all day, every day. That meant I could still breastfeed him with ease, and there was always someone there to deal with doctors and nurses. And, because Eric is so great, I was able to do all that without giving a second thought to what was going on at home, because I knew that Eric and Ellie would be just fine. Oh sure, I thought about them all the time, and I'd be lying if I said I didn't tear up most nights when they left the hospital for the day. I wanted to be there with them so badly. But, because Eric is such a great man, I knew I didn't need to be there. He always had it entirely under control, and I am so grateful to him for giving me that peace of mind and taking such great care of everything.

Ellie and Eric at Barnes and Noble story time

Fun at Southside Park for another Jax Moms Blog Park Hop

One thing that I hated about the stay was people commenting on how much bigger E.J. was by the end. And he was, I know that. He's also starting to try to hold his head up and is starting to find his voice. Basically, he kept growing while we were in there. I did not want that to be the case; I wanted to freeze time, to be able to restart his life after we got out. I was already sad enough about how fleeting his newborn days will be, and to have to spend 14 of those precious days in a hospital room was nearly unbearable. That was not how I wanted his life to begin and I hated that like it or not, that's just the way it was, and he was going to start growing up regardless of our surroundings. I just wanted better for him.

But, time kept on ticking away and at long last, we were cleared to go home. E.J. had his last dose of antibiotics at 6:00 a.m. on Monday morning, and they removed his PICC line soon after. We were cleared to leave by 9:00 a.m., so we packed up all our things (I had basically moved in), and bid farewell to room #411:

E.J.'s name outside the door

My "bed" during my stay. E.J. never used the hospital crib; instead he slept in his Rock 'N Play (aka "his nest") by my bed all the time.

The desk and cubbies where I unpacked all my stuff: projects to work on, clean clothes and linens, snacks, toys for Ellie.
Homecoming morning! No more PICC line, no more days to cross off on the countdown, and one snazzy outfit (courtesy of Auntie Heather)!

And then we were off to sweet, sweet freedom!

This kid loves wearing bowties home from the hospital. It's kind of his thing.

Finally on the outside! - Standing in the very plaza that I stared at out of our hospital room window all day, every day.

It is so great to be home. We're all thrilled to be back together. Now let's all just hope and pray that this is our last ER visit/ hospital stay for a long, long time!

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