The first few days at home

Sorry for taking so long to post the details of Ella’s discharge from the hospital. I know a lot of you have been anxiously awaiting the details. As you can imagine, the first few days home with a new baby (even one that is 5 weeks old) is quite an adjustment.

Most of you probably know that I went back to work for the last couple of weeks. My employer allowed me to go back to work for a few weeks until we knew when Ella would get to come home. This let me save more of my FMLA time to be with her. So I went back to work for 2 weeks, which meant that I missed out on the dressing changes and rounds that the Dr.’s made each morning. Joe did a great job of keeping me informed of all that was discussed. We knew she was getting close to being discharged, but we didn’t know exactly when it would happen, so when Joe emailed me on Monday morning and told me to pack my bags, I almost couldn’t believe it was true.

On Tuesday night Joe and I spent the night at the hospital. Before a baby is discharged they have the parents come and stay the night in a family bedroom that they have so that they can simulate what it will be like once the baby is home. There is minimal nursing care (other than a few stop in’s to check the baby’s vitals) and the parents are pretty much on their own. Ella did great that night. She woke up pretty much every 2 hours like clock work. Joe and I actually did pretty good through the night. It was about what we expected.

Wednesday seemed like the longest day we’ve had so far! There were so many things we needed to do before Ella could come home. We listened in on rounds and did her dressing changes as usual. The biggest hang up for our discharge was getting the broviac removed. There are a lot of kids needing surgery throughout the day, so the surgeons were busy taking care of them. The earliest time someone could come take the broviac out was about 3:00 pm. Joe and I also had to go get the car seat tested to make sure it was installed correctly. Wow, I never knew that so much went into putting a car seat in! The woman who helped us took her job very seriously and covered all the bases with us. Given that she has the lives of hundreds, if not thousands, of kids in her hands, I’m glad that she was so thorough. One thing that I’m sure of is that car seat base isn’t coming out of the car until Ella has outgrown the seat and we’re going back to Children’s to have the next size installed!

Joe and I also had to go pick up her prescription medications because the nurse has to make sure that we know how to administer it properly. We passed with flying colors, thank goodness. By the time we got back to the hospital the surgeon was in the process of removing the broviac. Now we just had to wait an hour to make sure there were no complications, and we could be on our way home. They let us go back into the family bedroom to rest for that hour. Joe slept and I just sat there watching the clock, waiting for 5:00 pm to arrive. The knock came at the door and we were told that after 34 days of waiting we could finally take our little girl home.

For those of you who have never had a baby in NICU, leaving the hospital after delivery without a baby is a very unnatural thing. You go to the hospital with such high expectations of what the ride home will be like, what will you do once you get home, what outfit will the baby wear, who will be the first guest, will Dad drive as crazy as he normally does or will he slow things down for your precious cargo? But you leave empty-handed, so everything is different…things are incomplete. So it was wonderful to finally get to dress her in her “going home” outfit (that her nurse Clarissa bought for her), strap her into the car seat, say goodbye to all the Dr.s and nurses that have become like family, and take that graduation walk. Things were complete…as they should be.

The drive home was wonderful, to say the least. Joe drove very cautiously and I, of course, sat in the back seat so that I could be there in case anything happened. We got home and did what I assume all new parents do…we sat and stared at our sleeping baby. She was beautiful and perfect in every way…perfect because she is exactly the way God wanted her to be and He doesn’t make mistakes.

Ella’s first visitor was Becky, our good friend and neighbor. Her second visitor was Darla, another good friend. I’m confident that she is the cutest baby either of them has ever seen, even though they didn’t use that phrase exactly.

Now, for the info you’ve all been waiting for, the first night! She cried…A LOT!!! She basically cried and ate until about 2 am. I just kept telling myself, this can’t last all night, she has to fall asleep at some point. I also kept reminding myself that unlike other sleepless nights, the next morning we didn’t have to wake up and be at the hospital by 9am. Finally at about 2 am she fell asleep. She woke up about every 3 to 4 hours after that. We all slept in until 10am.

We met with Ella’s pediatric dermatologist at noon. He has dealt with EB babies in the past, which is why we chose him. He looked at her foot, we talked about family history, my pregnancy, and her entry into the world. It was a good visit.

Thursday night was much better than Wednesday. Ella fell asleep around 10 and woke up about every 4 hours to eat. We still slept in. Shortly after we woke up this morning we gave Ella her first bath. She didn’t like it very much. We can only assume that the water hurt her poor feet a bit, but it was something that had to be done. Hopefully it will get easier as time goes on. We went to her first pediatrician appointment this afternoon and Ella is now 7 lbs 8 oz (there was a mistake a few weeks ago, she has never been over 8 pounds, it was a misunderstanding of medical lingo…we had that a lot) and she is 20 inches long. She was sound asleep when we got to the Dr.s office and of course when we had to wake her up she screamed the entire time. Man, that girl has some serious lungs! After her Dr.s visit we went to Joe’s office to show her off. It was his boss’ birthday and we thought that would be a great present. I made the mistake of telling Joe that he could pick out the outfit Ella would wear since it was his office. Of course he picked out her Mets outfit, which resulted in several strangers calling her a boy. I’m not offended, its hard to tell with these babies. When we got home I couldn’t take it anymore so I went upstairs and took a nap. Little did I know that Ella was sleeping right next to me and that my sneaky husband had taken our picture (its posted with the other pictures).

So, there you have it. The first 2 days have been good. The plan for tomorrow is to take Ella for her first walk. Now she is starting to stir and poor Joe is zonked out on the couch, so I had better go prepare the bottle. Thank you all so much for the countless prayers and words of encouragement. Ella is finally home. We are so blessed!

Katie