This month will forever mean more to us than it ever has in the past. Many of us see awareness signs and graphics and briefly think about it and then move on. I am certainly guilty of this. It doesn’t hit home until the sign or graphic represents you or your child. We have learned so much about CHD and feel privileged to share the awareness of this with others. ❤️
We spent time with our sweet boys for a good part of the day. We went to see Gabriel who currently weighs 3 lb. 13 oz. Our nurse today was delighted to share that Gabriel has been drinking his pumped milk each feeding and is taking bottles regularly. He has moved from 10 mL to 25mL and is at 30 mL tonight! He will soon have his feeding tube taken out since he doesn’t really need it if he’s taking bottles for each feed. They all are so impressed that he is taking bottles at 25mL regularly now this early on. We are so proud of him! Adam got to feed him today and he did such a good job. We both think he looks like Adam 😊
We walked into Caleb’s room today and I felt more at ease. I really appreciate your prayers for us and especially for the calm I have needed to overcome the anxiety felt when walking through those doors. We celebrated some really positive things today! First of all, Caleb had his pericardial drain removed and he has done really well. The surgeon removed it and they will watch the healing of this entry. Today, Caleb has done really great on the diuretics and is producing a good amount of urine. As an added bonus, he’s been able to do this without the blood pressure meds (epinephrine) which they stopped last night. This all means that there is a good reduction of fluids and swelling in his body. They wanted to lower the PDA meds (prostaglandins) so that the PDA, though crucial right now, doesn’t remain too open. They don’t want too much blood to go to the lungs. They lowered this at 9:30 am this morning and will monitor the blood gas levels today and moving forward to make sure it’s effective and he is tolerating it well. We are celebrating these small strides today and giving God the glory. He is working through all of your prayers of love and support and we can’t thank you enough! One prayer request is for his bilirubin levels to go down. It is normal for babies, especially preemies, to battle jaundice. He currently is laying on his blue light and has the light above him as well to help with this.
Today we were discharged from the hospital! We have been able to work with Hospitality House and Madelyn’s Fund to secure our stay at Homewood Suites on 4808 Sharon Rd. close to the hospital! We will be here for the week and regroup after that. I woke up today just really struggling with missing Aaron. We have been so fortunate to have grandparents help with him and he loves them so very much. The week before I went into labor, I was in the hospital for a couple of nights and a few days. I was admitted Wednesday night of this past week and finally left today. I was only able to Facetime with Aaron and I think I just hit that point today. Instead of checking in tonight, we decided to come home and surprise Aaron by picking him up at daycare. We have spent the afternoon and evening with him and will take him to meet grandparents so we can head back to Charlotte, visit the boys and check in to Homewood Suites.
I can’t explain how much this fed the soul. I’m crying as I write this because on top of everything we have been through over the past several days, we have, for the first time, been away from our sweet boy for this long. It adds another layer that creeps up and takes over. Even in a handful of days, we feel like he has changed so much. He’s absolutely precious. He just amazes us with his vocabulary, conversation, fun-loving personality and we quickly realized how much we crave this each day of our lives. Being without it has magnified our situation of being out of our “norm”. At first, right after tucking him into bed, he sat up and said, “I need you mommy and daddy” in such a whimpery voice. It just broke my heart. I knew this would be a difficult journey. I told myself that it’s ok, it will be tough but we are tough and will get through. Today though, I was weak. And that’s ok. We tucked him in again, reassured him we were right around the corner, closed his door, and I sobbed in Adam’s arms. I will cry tomorrow when handing him off. I will cry on the way to Charlotte. And still, that’s ok. It doesn’t mean I’m not strong. It doesn’t mean God isn’t holding my hand when the tears fall.
I will never forget each part of this journey and I pray that I can help someone else one day when we are on the other side of this mountain. Tonight I pray for peace and strength. 🙏🏻