I apologize for the delay in posting. The past week and a half since Liviana has been home has flown by. She fits into our family perfectly. It is really like she has always been here to me.
Let's see....where do I start? Liviana is gaining weight wonderfully. At her weigh in last Friday she was 7lbs. 11oz, which was a gain of 1oz. each day. That is awesome since our doc said the average gain is 1/2 ounce a day. At her appointment today her weight was 8lbs. 1.4oz. That is a little more than 1oz. a day. She is eating and gaining so well. She is a little chow hound, nursing any chance she gets.
I am recovering from Bronchitis, which started the Sunday we brought Liviana home. She has remained perfectly healthy despite my illness. She is breastfeeding so she gets the antibodies for my illness which helps protect her. It is an amazing process.
She had her follow up with Dr. Cusick on Monday. He thinks she looks fabulous. Her x-ray was beautiful. I was stunned when I saw it. It looks like a completely normal chest x-ray of a 6-week old. I requested copies of the x-rays and I will post them soon. Her diaphragm looks completely normal, which Dr. C. was very proud of. He provided us with a referral and report to Dr. G. the orthopedic doc to address her hemivertebrae. Brad saw it on x-ray for the first time and was rather startled. From about 6 on up her veterbrae are all out of whack. I worry about this impact on her in the future and potential scoliosis or kyphosis. It is a 3 month wait for an appointment which will be good timing. Keep her in your thoughts and prayers please. We will see Dr. C again in 3 months.
I had also noticed that Liviana did not turn her head to the right very often. Dr. C. said one of his twin daughters had the same issue and made a referral to physical therapy. We likely just need to exercise her neck and strengthen the muscles on that side. I also worry that it is related to the HV but Dr. C. said he did not believe so.
We had our follow up cardiology appointment today also. It could not have gone better. Dr. F. said she looks great, he is not worried about pulmonary hypertension in her anymore and he could not hear a ventricular septal defect (yes, I guess they can hear it) so he said it is likely closed. He said he will see her in 2 years. I was pretty excited to hear 2 years and not 2 months or even 6 months. Two residents were also present and when they listened to her they also said they could not hear any sign of a VSD anymore. Isn't that awesome!
Liviana's reflux did seem to be pretty uncomfortable for her but the past 3 days she has been great. She is content all day and we have not had painful screaming sessions. She is so alert and loves looking around, cooing and chatting with Aria. The sun rises and sets with Liviana in Aria's eyes. She runs to her immediately when we come into the room and she gets worried when we go to appointments that Liviana is not coming home. She is going to be the greatest big sister. Miles has been so good with the new addition. Before Liviana arrived he was always being held and picked up and still nursing a few times a day. Since her arrival he has become a big boy and does not seem too bothered by the changes. He still nurses 1 or 2 times a day for a short period of time but Brad now puts him to bed and he rarely asks to be picked up. He is just so sweet. Aria and Miles have started getting along so well and playing so well together. They like to give each other hugs which is the cutest thing you could ever see.
Liviana is doing so well. I was surprised that I have not worried about not having monitors at all. I feel confident in my mommy instincts and my ability to recognize if she is having difficulty. It has been a magical experience having her home with us. I love getting up with her at night even if I am ill and tired. She has put life in perspective for me and for that I am grateful. I feel like she is an old soul. She has already been changed by her experiences in life and I can see that in her eyes. She is strong and has an introspective nature about her and I can't wait for her to grow and thrive even more.
I promise I will update more often. Now that I am feelling better the days will begin to fall into place. I have some cuddling and playing to do with Aria now. Brad is getting Miles to bed and Liviana is sleeping so it is Aria and mommy time.
Thank you for your continued thoughts and prayers.
"Living with Scars" Project
3 weeks ago