Bedtime beanies!
Annelise has an aunt who has blessed her with some adorable ways to stay warm, now that the cold weather seems to want to stick around for awhile:)
Annelise Faith
Wednesday, January 27, 2021
Friday, January 15, 2021
1/15/21
This little lovie rolled from her side to her tummy and cleared her arm all by herself yesterday! First time for her! ❤
Next up is an echocardiogram and a cardiologist visit. Praying that there is no change from her last great report in June!
Update:
Annelise got a great report from the cardiologist today!!❤
Still not closer to confirming the cause of the small amount of fluid around her lungs... but SO happy to confirm that it is not due to her heart.
We will go back in 6 months for another check-up.
Glory to God for all of her days!🥰❤😍
1/14/2021
Apparently it was crazy hair day today😁 I think the same mystery abyss that hair ties get lost in, must also collects baby barrettes.
❤
Her chest ultrasound shows that she still has some fluid around her right lung. Her pulmonologist thinks it is such a small amount that we should watch it and take another look on ultrasound at her next visit. We have a 6-month check up with her cardiologist this week too, thanks again for the timing God! So I'll be happy to hear him say her heart is all clear as to the cause of this extra fluid around her lungs. She's a puzzle. A super cute puzzle!
Monday, January 11, 2021
1/9/2021
It has been quite the week! We had 3 appointments and an ultrasound this week.
Urology and Nephrology appointments went well. Our urologist is happy with the routine we have in place, and says unless something comes up, we can plan to follow up in a year!
Nephrologist said according to her lab results, her kidneys (or rather, her one big kidney in the shape of a horseshoe where the two kidneys are connected together) are working great!
The routine abdominal ultrasound that we get quarterly to check for any signs of liver cancer came back clear! But in that ultrasound, they noted an incidental finding of a mild pleural effusion, which meant she had fluid around her right lung.😳 A big thank you to God for blessings like us already having a pulmonologist appointment scheduled for the next day! We changed that zoom appointment to an in-person visit, and brought her in so her doctor could check her out. I was so relieved when she said that Annelise's lungs sounded super clear, and that she would have no reason to suspect fluid around her lungs from looking and listening to her. We got a chest ultrasound ordered, just to make sure. Waiting for the results, but Annelise continues to smile and seem happy and content, so I'm hopeful that the ultrasound will show the fluid is gone.
My amazing husband had a birthday this week! But being as adaptable as we are... we adapted the calendar to extend the celebration to this weekend... because nobody has time to make and enjoy a cake when the baby has fluid around their lung and Dr. Google says it's probably infection or heart failure... this is why I say thank you Jesus that we didn't even have to wait a whole day to get her seen❤
Here are some photos and videos of what miss Annelise Faith has been up to. She is getting so good at grabbing things. Her favorite things to hold are her tubes and wires🤪
She is holding onto toys for more than a few seconds now🥰
Saturday, January 2, 2021
1/1/2021
Baby girl is working hard at getting stronger! She surprised us this week when I went to help her roll to her side from her back by moving her hips like the PT taught me.... she kept rolling! I had to help her get her arm out of the way so she could roll all the way to her belly, but she was content and moving around more than we have ever seen her move before! The video below is her right after she rolled to her belly.
I'm enjoying putting together healthy foods to blend up and feed her through her gtube! I'm hoping that I'll get faster at it as I get more experience. She still gets formula in the blend, as well as overnight... but the goal is to eventually just have her eating real food like she would if she ate by mouth, just blended up and sent to the tummy through a tube!
I heard this song today, and it reminded me of the first time I heard it. We were in church, and I was pregnant with Annelise. It was super helpful to have lyrics that specifically helped me tell my anxious thoughts that they had to bow at the Lord's name. I can still remember the feeling of being so scared of losing her. That fear lingers still on the outskirts, and I'm sure it is because of people praying for me, that I can spend as much time with my thoughts in the present as I do. It takes effort to stay focused on what matters in front of me instead of all the what-if scenarios that could take what I love away. I'm so thankful that I have a God who has written a bigger story for my whole existence than I even know, and He doesn't just agree to meet me at the end of the story, but He walks through it with me page by page, and the more I take little leaps of faith to trust in His love and promises, the more I find personally just how trustworthy He is.❤
I know loss will be part of our story at some point. But there is so much living going on right now! Taking time to celebrate today🥳❤🌺
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