Sunday, April 17, 2011

Adjusting to Home Life

I know there are many people who have been waiting for this post for a while now, so I apologize about it's delay. Setting back into normal routines and incorporating new ones for Lillian has been stressful and time consuming, but totally, absolutely worth it. With the exception of one issue which I'll go into later, Lillian has been thriving at home, and so has Annabelle. Annabelle has been so excited to have Lillian home that she has been running around telling people about how we brought Lillian home because she got a new heart.

We've also seen quite the changes in Lillian since arriving at home too. At the hospital, Lillian was extraordinarily quiet and almost never made normal baby noises, the exact opposite of Annabelle. Those of you who know Annabelle know that she is not a silent child by any stretch of the imagination, so we had expected Lillian to at least be similarly noisy. But from our time at the hospital, it looked like this would trait would not carry over to Lillian, as she always seemed reserved and quiet. Granted, when you grow up at the hospital, this could be expected, but Annabelle was always in our room putting on some sort of show or making some enormous racket for Lillian (and the nurses), so it was a surprise to see Lillian so quiet. However, Lillian's made a complete turn around at home. She has taken up Annabelle's old standby of yelling/grunting/shouting/screaming at the top of her lungs for no particular reason other than to make noise, something Kathryn and I welcome and enjoy. Annabelle's personality is so spontaneous and funny (to the point that as soon as I can think of a decent name, I'm starting a Twitter account dedicated to Annabelle's one liners), that we would be thrilled to see Lillian have even a shade of the joy and vitality that Annabelle has.

However, not all of the Lillian's changes at home have been good. We've been struggling to get Lillian to eat orally even after transplant. We had high hopes that the transplant would solve or at least help Lillian's feeding issues, and for a brief time, there was hope in that regard, but she came down from that high point pretty quickly. By the time we were discharged, Lillian was back down to eating only about half a bottle a feed, and even then, requiring a song and dance from us to even convince her to eat. At home, she has refused to take a single bottle at all, and we've had to bolus all her food. This is likely related to the formula change that we did upon discharge, something we have no option about since the formula she was on at the hospital is exclusively available to them (Enfamil, the brand, doesn't even mention it on their website). We're already feeling like we're at our wits end and will likely have to feed her via NG tube for much longer than we had hoped, prolonging the need for the tube. Of course, the fact that she's never allowed to get hungry doesn't help either, as we *have* to feed her every 4 hours.

Besides the feeding issues though, Lillian is overall doing very well. She seems happy to be home, although she certainly has her moments. Some are 'roid rage moments, moments where she clenches her fists, furrows her brow and grunts like she's going to go to war; while others are simply her being a baby. Annabelle is certainly helping her adjust though.

I do think it is harder for Kathryn and I to adjust at this point though. We've been going to Seattle Children's for the past 6 months, to the point that it was our new normal to be there every day. It certainly has been a radical change for us specifically. Children's was in many ways our home, and we loved all the staff members there to the point that they felt like family (especially our main day nurses; Greg (or Greggy as Annabelle called him), Kelly, and Courtney). Many other nurses deserved to be named too, in no particular order (sorry if I spell your names wrong, your name tags are impossible to read) - Jamie, Kara, Kaitlynn, Tonya, Jenn, Sofan, Suzie, Annie, Sam, Angie, Jessica... more names than I can even list, there have been so many of you who have cared for Lillian, granted Annabelle her ridiculous requests and laughed during one of Annabelle's *many* flights from our room. In some senses I feel like I am experiencing a form of Stockholm Syndrome, although I would never describe any of you as keeping us hostages. But we would be lying if we said that we didn't miss you all too. You made our stay tolerable and even at times enjoyable; laughed at our dumb jokes and insane family; our waiting time seem short; supported us beyond simply caring for Lillian and showed us hospitality far above what you were called to do. We feel so blessed to have had all of you as nurses and caregivers, rooting for Lillian and us the entire way. I would write DAISY award recommendations for all of you, but that would then defeat the purpose. Thank you so much for the care and support you have given our family, we would have never made it through this without you (doctors/surgeons/unit coordinators, I haven't forgotten you either, but this paragraph is insane at this point). It is my honest opinion that you're all shining examples of humanity, a yard stick by which other people should aspire to even be judged against. Thank you a million times over!

True to my earlier words, I can't name everyone in this picture, although I recognize everyone in this picture. I apologize for not knowing all of your names, but it simply isn't possible for me. Plus I have the memory of a goldfish. From left to right, unknown, although we saw you constantly, Courtney, Greg, Kara, unknown, but again, saw you constantly, Jessica, and the cleaning lady who always took the time to make Lillian's day brighter, to the point where Lillian would burst out laughing when Lillian saw her. A photo we will forever cherish.


  1. I am so happy everyone is adjusting so well to home life. I know Lillian will get the hang of takes some time. Your post is so telling for so many of much time in the hospital feels like home. It is great that so many people provided such care there that you felt like that though.

  2. I'm so glad to hear she is doing well overall. I'm quite sure Annabelle is keeping her entertained. She is absolutely hilarious. I hoe her appointment this morning went well. We will continue to pray that her feeding issues improve and for all for you as you adjust to all being home. Even good change can be hard. Keep up the amazing work raising those little girls. Thanks for taking the time to share your journey.

    Annika, (Elise and Hannah too!)