Week 4 @ Home Updates

We have had another uneventful week at home, thank God! Daniel’s weight gain has really taken off this week. He is up to 3.46 kilograms, which is 7 pounds 10 ounces. He was born at 5 pounds 2 ounces, and he was 6 pounds 1 ounce when we got home a month ago. Much of Daniel’s weight gain has been in the last two weeks. He has also grown an inch since coming home. He was born at 18.5 inches, he was 20 inches when we got home, and now he is 21 inches long. It is so incredibly exciting to see him thriving! We are so thankful for God’s continued blessings and for answered prayers.

Daniel’s voice has come back this week!!! It seems like his vocal cord has healed! When we came home, I could barely hear him cry, and now he is loud and proud. I suspect he likes to hear his own voice because now he is cooing and vocalizing more than he was. Or maybe he always was and I just couldn’t hear him. Whichever it is, I am thankful.

Daniel seems like such a “normal” baby. He is reaching for things, smiling at us, and cooing all the time. It is honestly so difficult to believe that he has anything “wrong” with him. I was afraid he would be developmentally delayed because of all he has gone through. He was 6 weeks premature and has had 3 different surgeries, one of which was an open heart surgery. He has been on tons of narcotics for pain management, and he has spent 13 days total intubated from his three surgeries. He spent most of his first 52 days of life flat on his back with tons of tubes and wires coming out of him. And yet, he is a totally normal baby, meeting his milestones the same way David and Hannah did. How INCREDIBLE is our God? Watching Daniel grow is watching a miracle unfold right in front of my eyes.

We had an appointment in Houston on Thursday, September 27th with his single ventricle cardiologist. Daniel is seeing a cardiologist in Temple as well, but the cardiologist he sees in Houston will be the one who recommends when he has his next surgery, the Glenn. In Houston, he had another echocardiogram. Daniel’s heart function looks great! His right ventricle is having to do all the work– receive all the blood in his body and pump it out. As a result, his right ventricle is a little dilated, which is expected in single ventricle children. His tricuspid valve is also regurgitating a little bit, but that is also to be expected since his right ventricle is stretched. The Glenn operation will divert all the blood that needs oxygen from his head and upper body directly to his lungs, bypassing the heart altogether. When that happens, his right ventricle should shrink down a little bit (it’ll never go back to its normal size), which should solve the valve regurgitation.

Dr. V, the Houston cardiologist, said Daniel is probably looking at some time between mid-November to December when he is 4 months old for the Glenn. She said the main concern is his weight. He needs to be as big as possible for the next surgery, and they are hoping he will be over 4 kg. Daniel has gained half a kilogram in the last two weeks alone, so he will for sure be over 4 kg by the time he has the next surgery. Dr. V said she would schedule his pre-Glenn heart Cath procedure for the day before his surgery so we won’t have to make two long trips back to back. We go back on October 25th for his next appointment, and we will probably receive a surgery date then.

We have really gotten our routine down this week. Daniel seems to have settled in nicely, and he is such a content baby. He never vomits or spits up, and he is very consolable when he cries. David and Hannah have also settled in to our new life. For the first couple of weeks, it was a little tough for them. They spent two months in a kind of gypsy existence, shifting from Lala’s house to the RV in Houston. For the last month as we have all been home together, we have relearned routines and expectations. They are really good with their baby brother, and they are very respectful of his feeding tube. David especially loves talking to Daniel, sitting with him on the floor, and playing with him as much as possible. He polices Hannah, making sure she isn’t too wild around Daniel. We are trying to reinforce that he is not in charge of Hannah, and it isn’t his job to tell her what to do, but David absolutely has it in his head that he is the boss of her.

David, Hannah, and I went to Houston for Sienna’s second birthday last week. The kids had a blast playing together. The party was a small family get together, which is really good because we are trying to limit David and Hannah’s exposure to other people as much as possible. Daniel, of course, can’t be around other people, but David and Hannah are also not supposed to be around others in case they bring something home to Daniel. I am so thankful we live in the country so close to family because the kids don’t feel pent up or limited so far. They are outside playing 24/7 with Big Daddy when they aren’t at home with Daniel and me.

One amazing thing I have learned through all of this is how richly God provides all of our needs. Many from our church family brought us food the first two weeks we were home. The food was incredibly delicious, and I was very touched by those who provided meals. Then my friend and former colleague Candace texted me and said she would like to bring us food. Then the ladies from her weekly bible study group–women I have never even met– volunteered to bring us food! I am so inspired by their willingness to reach out to someone they have never met.  We have had a steady stream of meals provided since we got home a month ago, for which we are so thankful. I can’t express enough how wonderful it has been to have such delicious food provided as we have gotten used to our new normal.

Thank you so much to everyone who has provided for us, whether by food, monetary contributions, and through prayers. We are so blessed to have such incredible support. I have learned such a valuable lesson about what being a Christian looks like because of all of you.

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