Home has been incredible. I am a mother. Sean is a father. And our son is home-right where he belongs.
Alden was in the hospital for 78 days & we were gone for 96 days. The time away was such a journey. Seattle Children’s and UW hold such a special spot in my heart. They are a part of Alden’s story. From Dr, Jolley to Dr. Javid, to the nurses in the NICU and the surgical floor, all the way to the Starbucks baristas. They are all such an important part of Alden’s life. In various ways, they all helped save him.And not just them. You have too. We are so grateful.
The day we were discharged was such an emotional day for everyone. We knew that we were finally taking our sweet boy home-something we longed for since the day we learned about CDH, and yet it was so bittersweet. Saying good-bye to his nurses was probably the hardest part. Over the three months that we were there, we all shared tears, and laughter. They saw parts of my inner most being that I didn’t know existed. They saw Sean and I in the raw 24 hours a day, 7 days a week. Imagine living your life in front of strangers. It is pretty interesting, and weird. ;) Needless to say, Alden had the most caring nurses in the world. I wish I could repay them someday. But how do you give them what they have given us? You don’t…you can’t. You just always remember them and always thank God for them. I have realized that nurses are just people, deeply caring for other people. How come we can’t all be like that?
I was so busy that day in my head. I was worried about how we were going to take care of Alden even though we had been thoroughly trained. I probably went over every scenario that could happen at home over and over and over. I am thankful the nurses and surgery team were so patient with me. I was driving myself crazy-I can’t imagine how it was for them! I appreciate them so much. We have survived here at home just fine. We have replaced Alden’s NG tube twice, and easily give him his meds. It is not as scary as I anticipated. I still am fearful. He sleeps with a monitor so that we can watch his sats during the night. I often get out of bed and make sure he is breathing. I make sure to kiss him every night just in case. I can’t help but think it could be the last time I get to kiss him. I hope the anxiety will stop soon. It is so exhausting.
Our dear friends Charlie and Sara photographed the day we left and I will forever cherish those pictures. I dreamed and hoped for that day for so long. And all the while I was beaming from ear to ear seeing my son in his carseat, I felt a deep sadness for all the other CDH families that I have been in contact with that didn’t get to bring their child home. If any of you are reading this, please know that I thought of you. I thought of Esther Holtrop the whole way home.
Home has been a transition. Caring for Alden is hard, and exhausting, and SO rewarding. I love that I get to change his poop and not someone else. I love that I get to rock him to sleep, that Sean can play his guitar to him, and that we can look like fools just to make him laugh and smile. What a job. The help was nice, but there is nothing better than being here doing it ourselves.
Alden is such a big boy now. His follow up appointments went well. He is still in the 5th percentile for weight, and in the 25th percentile for height, but that is normal for CDH babies. They burn a lot of calories working so hard to breathe! He is up to 40 mls by bottle 4 times a day, and the rest of the amount he needs is fed through his NG tube. He is still on a continuous feed overnight. He LOVES to eat. And we are so glad. He is still getting my breast milk, but we do fortify it with Similac and Beneprotein so that he can get the amount of calories he needs to grow and thrive. I am weaning myself of pumping, and I am so sad to do it. I have lost my supply significantly. We are unsure why it dropped so much. Maybe it was due to the transition home, or the switch from a hospital grade pump to a normal pump…maybe it is because I am not eating/drinking enough….who knows. But I can’t seem to get it up. I have enough milk stored up for him to have for about 3 more months. I am sad, but trying to up my supply and seeing absolutely 0 results makes me more sad. I’m pretty bummed overall…I feel guilty, and feel as if I will be losing a special bond with him. But I know that I gave what I could in the most excruciating circumstances.
Our days mostly consist of mixing milk, filling feeding pump bags, feeding Alden, meds, pumping every 4 hours (which will slowly be reduced) and filling his oxygen, as well as making sure we are up to date on supplies for his NG tube, etc. And still trying to live normally. It really isn’t that bad, just tiring!
Alden loves clicking noises, kissing noises, and playing Peek-A-Boo. He loves being held, and has recently discovered his fingers. He loves laying in bed with us in the mornings, and loves the bath still. He is such a pleasure to have. We adore him. His laugh is priceless.
I am still trying to sort out many emotions and feelings. I feel as if the days are currently flying by and I am so busy caring for Alden that I don’t have time to deal with some of the deep DEEP emotions I have. I know they are there. I can physically feel it in my chest-racing heart, tightness..shaking. I don’t know that I will ever get over how traumatizing it was to prepare for my son to die, seeing him in the NICU, hemorrhaging, getting a D&C and blood transfusion, and then watching Alden fight to get out of the hospital. I am forever changed in a way I can’t describe.
Thank you all for reading my blog. Sorry it was so scattered tonight! I will continue to write, and I hope that you all will still read it. It means a lot knowing that my time isn’t being wasted in front of the computer screen.