Weeks 2-3 @ Home

It has been a few weeks since I have posted Daniel updates. I feel like I am running around like a manic chicken with my head cut off most of the time, and I haven’t had much time to write.

Daniel is doing really well. Each morning we weigh him on a small scale, and we take his oxygen saturations at least twice per day, once in the morning and evening. When we got home 3 weeks ago, he was 2.75 kg, and now he is 3.17 kg, so he is growing! Babies with congenital heart defects usually have a tough time gaining weight compared to heart healthy babies, so the fact that Daniel is consistently gaining weight is good news!

Daniel’s oxygen saturations are usually between 78 and 82, which is ideal. His goal is between 75 and 85, so the fact that he is falling in that area each day is great. His heart rate is usually between 130-150, which is also where they want him to be.

Earlier this week he started smiling consistently, so that has been a real treat. He had smiled a couple of times before, but this week is when he smiles when we smile at him and talk to him. He is really interacting with his brother and sister. It is a miracle that the kids haven’t ripped out his G-tube on accident yet. David and Hannah adore him, and they can be a bit too exuberant, especially when Daniel is awake.

Daniel still spends most of his time sleeping, but he is getting into a predictable rhythm. His night feeds stop at 7 a.m., and his morning feed starts at 9 a.m., and we give him meds at 8 a.m. Between 7 and 9 a.m., he is awake and alert. He enjoys sitting in his vibrating bouncer or lying on the floor where he moves his head, arms, and legs.

When Daniel is hooked up to his feeding tube receiving continuous feeds (9-11 a.m., 12-2 p.m., 3-5 p.m., and 6-8 p.m.), he has to be propped up at a 45 degree angle or he will vomit, so he is usually being held or sitting in his swing or bouncer. When he isn’t hooked up to his feeds (between 11-12, 2-3 p.m., and 5-6 p.m.), I try to put him down on the floor on blankets so he can move around, smile and coo. He really enjoys interacting with his family, and I love getting to see his personality emerge and develop each day.

David and Hannah are enjoying having our family back together. They are really becoming best friends, and their bond grows deeper and closer with each passing day. That being said, they REALLY know how to push each other’s buttons. The can make the other cry quicker than anyone else, and their fights are EPIC right now. As we are trying to navigate Daniel’s medical needs, we are also having to figure out how to parent two toddlers, and that is just as challenging right now.

We had a narrow miss last week when my mom came down with strep. She was extremely sick last week, and she had been around all of the kids (Daniel included) in the days leading up to getting sick. We were all really scared the kids would come down with it, especially Hannah and Daniel. Hannah has seizures when she is sick, and it would be a disaster for Daniel to get sick before his next surgery. Thankfully, none of us got it, and my mom is finally on the mend.

Daniel’s cardiologist recommended that we do not take David and Hannah to Sunday school or to any place they may be exposed to other children, especially ones who go to daycare, until Daniel has his next surgery. Since it is flu and RSV season, if David and Hannah are around other children and get sick and bring it home to Daniel, it could result in, at best, hospitalization for Daniel. It is only for a short time, and our number one priority is keeping Daniel healthy until his next surgery.

The highest mortality rate for children with HLHS occurs in the interstage period between the Norwood and the Glenn, so we have to be extremely careful. We are obsessive about hand washing, and we can’t accept any visitors. Thank you so much to everyone who has brought us food! I am so sorry we can’t invite you inside to see Daniel; I really wish I could show him off to you. But it is just too risky right now. Daniel’s life is on the line, and we have to protect him as much as possible.

When leaving the hospital, I was prescribed Sertraline 50 mg for anxiety and depression.  At first it really helped, but a few days ago I realized that I was having a weird reaction to it. From the moment I took my first dose, I have felt like I am on speed or something. I am afraid that I am having some sort of manic episode, and usually that can swing to a major depressive episode rather quickly, so I am constantly on edge at the moment. I am having trouble sleeping, and when I do sleep it isn’t restful, and I have weird dreams. I am aware that how I am feeling isn’t “normal.” My goal for the moment is to just take care of my basic bodily needs– drink water and eat. It is really easy to ignore both of those things when I “get going” on some task. I am hoping to start exercising soon, too. I know I have to keep it together right now. Please pray for me.

One of the most challenging aspects of our new normal is all of the appointments we have to go to. Daniel has an appointment with an occupational therapist today at 1 p.m., and he has an appointment with his single ventricle cardiologist in Houston tomorrow at 2 p.m. He also has his 2 month checkup with his primary care doctor Tuesday, October 2nd at 11 a.m.

I will be posting updates after his appointment tomorrow in Houston. We should know more about when his Glenn will happen after that appointment.

Thank you all for the continued prayers and support. Please continue to keep Daniel and all of us in your prayers as we continue this long journey.