Journey to Transplant: Part 1

Seeing the pictures come up on facebook from “on this day last year” sure bring back a lot of difficult memories. Emma went through her first round of major medical challenges right after she was born, with two heart surgeries and a long hospital stay. But we got to go home six weeks later, and although it was extremely difficult having her home, and being constantly on edge with her medical condition, we were so happy that she was home.  Things were hard at home, but we knew it just had become our new normal. Seven med times a day, continuous feeds through her feeding tube which caused her to throw up frequently throughout the day, vital checks every few hours and sometimes constant oxygen saturation monitoring. Emma refused anything by mouth and feeding had become such an issue that it was time for her to get a gtube. We had fought it for awhile, in hopes that she would start eating by mouth. But her oral aversions seemed to be getting worse rather than better. The NG tube made Emma miserable and caused her to gag and retch everyday. We hated seeing her miserable and we knew she needed to start keeping her feeds down so she could gain weight for her next open heart surgery.  She had already needed another hospitalization because of vomiting and dehydration. So her gtube surgery was scheduled for September 2^nd 2015. This was the beginning of her second round of major challenges and worsening heart failure.

Even though Emma’s heart was failing and she was throwing up all the time, she tried so hard to be a happy baby. She has always had the biggest smile, even in the midst of her worst heart failure. The night before her gtube surgery was no exception. My mom and I went up to Spokane the day before and got Emma settled in the Ronald McDonald House. Mickey had to work but he came up later that night. I remember how happy Emma seemed. I put her on the bed and she stretched out and had a big smile on her face! I laid down next to her and tried to facetime Mickey but the internet wasn’t working, so we took selfies to send him instead. Emma was in such a good mood and she still had that smile.    

                                       

That night we stopped Emma’s formula fortifier and gave her regular breastmilk through the night, then early in the morning we stopped that and gave her plain pedialyte, then a few hours later she couldn’t have anything until after surgery. It really didn’t bother her that much, because she didn’t understand the feeling of hunger yet. So we took her to the surgery center and after awhile, we went back to a pre-op room and got her prepped for surgery. It was a lot harder letting her go into surgery than I anticipated. The first two surgeries she had were emergency surgeries and the third was planned but was still a part of her first hospital stay. So at that point we were just desperately trying to keep her alive. This was different because it was an elective surgery, but still had it’s risks as with any surgery. We said goodbye to our little baby with an NG tube. This was supposed to be a straightforward procedure with no complications, and it was, for the most part…

Surgery was straightforward as excepted. But when we went to see Emma in recovery, I about lost it. She was crying and whimpering in pain, and just looked miserable. I couldn’t handle it and I started crying. I immediately felt horrible that we had just put her through this. Even though it was a recommendation from her doctors and Mickey and I were trying to make the best possible decision for Emma, I still felt horrible. Her recovery was rough. She didn’t want to be touched at all. Anytime anyone touched her, she just cried out in pain. I didn’t hold her for awhile. I don’t even remember how long, but she just didn’t want to be touched or moved at all. She was in so much pain that they kept increasing her pain meds. I remember a couple of days into her recovery, the ICU doctor, nurses, and therapists were all in her room talking about alternative ways to comfort her because they couldn’t keep increasing her pain meds. So they ended up having me hold her in an effort to comfort her. I think it did help some to have the comfort of mommy. But I just remember sitting there and wondering what was going on, why she wasn’t recovering as quickly as other kids, and when we would see her smile again. It was hard. But slowly they got her weaned off a lot of the pain meds and a few days later we were headed home. She was still really swollen when we left and required strong pain meds around the clock, but the doctors didn’t seem concerned. We went home on a Saturday (four days after surgery) and things didn’t improve…

To be continued...