First, we are home! We got discharged on May 8th, so we were home in time for Gavin's 2 month birthday and for my first Mother's Day! We were so exhausted from everything that Mother's Day was kind of a blur, but Gavin got me some cool stuff, and we went for a family walk! Honestly, being home was all I needed.
What is home like? Hectic! We came home on continuous feeds through an NG tube, and Gavin is still on the tiniest whiff of oxygen from the rhinovirus setback. Pulmonary seems to think he will be off of it in the next couple of months. Fingers crossed. We ended up back on continuous feeds because Gavin just all of a sudden stopped tolerating his bolus feeds. Since it is so important for him to grow, I understand the importance of getting him all of his calories. After he was home for less than one week he also gave us a horrific scare by refluxing while crying, which closed off his airway. Ryan had to perform CPR and we ended up back in the hospital for two nights. Right now he has an ND tube that bypasses his stomach to reduce the chances of that happening again. We still work on oral feeds three times a day, and he still does well with it. It is a delicate balance with these kiddos because they need to grow so they can have room for their organs to return to their stomach cavity. Also, Gavin needs to grow so his left lung can heal! After the rhinovirus setback we had some studies done and Gavin's left lung is a little underdeveloped, which is so common for O babies! That is why the virus was so hard on him.
Right now the plan is to just keep doing what we are doing. His omphalocele has shrunk by at least 30% and it is growing new skin on it like we need it to. He is also growing well! The last time he was weighed he was almost 10 pounds! He is such a fun baby. He is discovering his voice lately, and somehow he sleeps almost all the way through the night! I have to admit that I was so focused on getting home that I wasn't totally prepared for the craziness of being home. Having a baby here has been quite the adjustment, but well worth it. We are starting to sink into a routine with him and also trying to find time to catch up on our DVR!
While being home is such a HUGE milestone, I know we still have a journey ahead of us. We still have to work on oral feeds, getting off the oxygen, and have closure surgery. Tuesday is our first outpatient clinic day at Seattle Children's and I am excited for his attending surgeon to see how well his omphalocele is doing. But, in the mean time we will continue to enjoy Gavin and the excitement he brings to the house. The dogs....they are still adjusting. :)
I will share Ryan's post that he posted on Gavin's private Facebook update page:
Well, Gavin is home! Not the home that he has known for nearly two months at SCH, but his real one in Orting. As all of you know, it's been a very long, and twice extended, haul. As you can see from the picture, the family (aka The Pac - without the "k" because we live in the Pacific Northwest) is very happy to be reunited, and for the pins and Gavin, happy to be meeting each other for the first time. It's all been a very surreal and kind of hazy experience, but I believe that it will help us be better as a family moving forward.
I'd like to thank each and every one of you: family, friends, and even people I don't know personally, for being a part of this and for helping us out along the way. Many of you have helped by visiting, bringing us meals, and cheering on Gavin as he made itthrough this whole ordeal. On top of being extraordinarily helpful to our family, you have also shown others that have similar situations that it is possible to make it through something like this, especially with great family and friends to rely on.
I'd also like to thank my beautiful wife (Carly, I think most of you know her) for being such a great mother, and making sure that Gavin was always taken care of in some unique situations. She has been an amazing friend, an amazing wife, and now it looks like she's going to three-peat by being an amazing mother too. I can't express enough how much I love her for all of this.
Thank you all so much again for everything, and I hope that you all know that if our family can ever do anything to help any of you down the road, just let us know and we will be there.
I think we are now ready to start the next stage of this journey, and everything seems right in the world now because Gavin is home.
Ryan
