We are still amazed. This little guy is a real trooper. He has defied the highest hopes we ever had from the first day we learned of his condition. We are so amazed with his growth and recovery. And simply thankful. Honestly, so thankful.
So we have been home for 11 days, and he has gained 17 and a half ounces. Remarkable.
Adeline is doing so well considering the dramatic change in her world. She loves "my Lucas," and checks on him all the time. We are also talking with her about things she gets to do because she is a big girl. She is darling. and so spicy.
Jeff is the best. I love to be a partner in parenting with him, and I am glad there is two of us. I CAN NOT imagine trying to do this on my own. I am also very thankful that Grandpa is here, it is nice to have an extra set of hands for all the transitions. Adeline just adores him. We are going to miss him when he has to leave. Miss him dearly!
Updates on the doctor's visits we have had...
The pediatric cardiologist thinks he looks fabulous. He had to get a chest x-ray that he was NOT happy about, they had to do it three times. Poor guy was so upset. Other than that-- his oxygen levels and blood pressure are great. We have another follow up at the end of February, and he is no longer on Lasiks.
We saw our regular pediatrician this week, and took Adeline with us, she was so glad that she was not the one who was getting ears checked. She was very interested in how they looked at him and checked that everything was okay. I LOVE our doctor, she is the best. The first call she had gotten was when Lucas was about 5 hours old. They kept her in the loop about everything, and she was thrilled with his progress, too. She had at least 73 pages of information, notes and labs that she will be keeping in his chart. I know that they are supposed to communicate with the primary care provider, but I was genuinely pleased that they had communicated so frequently with her. She is a great doctor, and is just confident, empathetic and I just really like her. I feel like she took time with us, and that our baby- and our story was very important to her. Anyway, I was very glad to see her and very happy with her responsiveness.
We also have had 2 nurse home visits, which have been fine, they continue to see that he is growing, and that his incision is healing.
Next week we should be getting (hopefully) a shot for Lucas that will prevent/fight against RSV. I found out that each shot costs 3300 dollars! Holy Shit! They have to make sure to have prior authorization from insurance that they will cover it. (NO WONDER!) So that actually brings up a whole different topic of the mess of bills and insurance crap we will have to deal with. I know it will be fine, but I am sure that I will end up spending a fair amount of time on the phone chasing all of this, but ultimately thank goodness for insurance! I will try to steer clear of this topic- and I guess if this is our biggest worry, we are doing very well. Hopefully that makes sense.
Anyway, I am still so thankful for the calls and emails that continue to come in and love and support everyone continues to show. We have so much to be thankful for, and it is hard to believe that a month ago all of this was unknown. It was unknown when he would get here, how he would do, and how we would do. It was unknown when we would be home from the hospital.
Now that is it is known, and that we have been so lucky and watched over every step of the way... I am thankful. And relieved, and tired, and in love, and can look at my little family in awe. And I am just so thankful for all the pieces that worked together. Who knew we would have the best possible outcome?
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