I wanted to give a quick update on Bella and life. Unfortunately I usually end up writing way too much and over-sharing. For that reason, you can scroll to the bottom of this post for a TLDR (Too Long Didn’t Read) summary.
Isabella is doing quite a bit! I have to remind myself that she is only 5 1/2 months adjusted and not the technical 8 1/2 months she is. She loves to coo and make lots of noise. She mimics us and my sister Kayley actually taught her to curl her tongue the other day! I didn’t believe it until she was doing it the next day on her own!
Bella can’t sit up on her own, but enjoys her sit-me-up-chair and rolls around quite a bit. She doesn’t love flipping all the way over and settles for just rocking side to side.
She doesn’t like tummy time, but we are trying to sneak it in every day. I’m not sure if it’s because of her gtube or if the pressure makes her vomiting worse.
A new special love is books! Bella loves to flip the pages and look at the bright colors. She enjoys listening to others tell stories. She especially loves visitors of all kinds. Grandma Julie and Grandma Kim are over a lot and spoil her with lots of attention and play time. She is reaching for toys and pulling hair (ouch!). We are excited as she grows and hope she will be sitting up on her own.
Little itty bitty Bella is still tiny. She’s in the less than 1% for her age, but we think she’s just extra teeny and cute! A good friend found this adorable art piece that fits her perfectly. (Thank you Zara, Alex and Alex!) Even though Bella is 8 1/2 months, she is just under 12lbs. She wears size 1 in diapers and also wears 3 months in clothing.
Her size isn’t a big concern currently because her rate of growth is getting better. For once, our dietician seemed pleased with her growth! She averages less than 15 grams a day. Of course they’d like to see her hit 30 grams a day, but she likes to do things her way.
Eating…Starting Baby Food!
We got the green light just Tuesday to begin trying baby food with Isabella! I rebelled and had bought a small jar of Beechnut baby food to try. (Silly me, I didn’t realize a blend wasn’t the best choice until later). Thankfully she seemed to tolerate it. This will be a long process since Bella has such a strong eating aversion. We are excited to begin working with her and will be allowing her to try fruits and vegetables that are thicker to prevent her from aspiration.
Our GI Dietician suggested allowing her to be in control during the feeds. We will allow her to hold the spoon and/or reach for the food. We have to be very careful as to not irritate her or bring back scary memories from when she was silently aspirating and we didn’t know it. Our goal is for her to just tolerate oral feeds. She hasn’t had anything orally since we left the NICU in June after her feeding tube was placed.
For fun, and curiosity sake, I offered her a bottle a few times last week. She had no idea what to do with it. BUT she did reach for it and didn’t cry or knock it our of my hands. She held it and chewed on the nipple. She never latched, but seemed ok with just gumming the nipple. I emptied the rest into her feeding tube bag and let her get comfortable with it. We will go straight to a sippy cup because of her eating issues.
Bella continues to vomit, but it is getting better. She is doing overnight feeds which are amazing and allow her to get more in her tummy without gagging. She is also taking medications and seeing our local chiropractor, Dr. Matt Beachy. We have seen a huge improvement in her overall health since starting overnight feeds and seeing Dr. Beachy. Bella still vomits 3X or more times a day, but it is much more manageable than 8x!
We have noticed other benefits like increased energy, the ability to burp without throwing up, and hair growth!
Synagis Shots to Prevent RSV
Bella gets these crazy expensive shots once a month. It’s called Synagis and it’s basically antibodies injected into her to help her fight RSV. It’s surprisingly not a vaccine. Only certain babies that are high risk qualify. The home health nurse comes and gives it to her in the thigh. Thus far we’ve had one injection for November. It’s a very interesting process.
This also means that we have chosen to mostly isolate Bella to home. We have only taken her to the Grandparents and her appointments. We have limited visitors. When we do go out ourselves we change our clothes and sanitize like crazy. Long story short, Bella has a weaker immune system. She needs protected as a micropreemie and we are making this a priority.
Bella did get a small virus, but was able to fight it off, almost completely. She is a little congested still but nothing bad. The doctors at Akron Children’s Pediatrics made an emergency appointment and assessed her. They suggested she fight it off herself and not to give her medications, which made me happy. She had a runny nose, slight cough (which sounded like a barking seal), and low fever. I believe I gave it to her. She seems almost over it. We also had her tested for RSV to rule it out. She didn’t have it. The doctors are amazing and the one we saw called us that night at 9pm to confirm she was RSV free!
Mourning A Loss
Unexpectedly we found out one of my friends, Elizabeth Brown, committed suicide less than a week ago. Elizabeth was a great friend and I grew up with her and her brother. This loss has really hit us hard and we are grieving. As a mother, I now experience this loss in a new light. My heart is broken for her husband, her family, and friends. This has certainly made me think about life and hug those around me a little longer. I’ve also been feeling a little gloomy, which is to be expected.
I will miss this special friend and am preparing for her memorial service. My little sister, Kayley, and her were like sisters and she will be speaking.
God’s Love & Friends
In the midst of a hard week. Things seemed to get harder. We are getting hit with quite a few medical bills (go figure). We were denied help because of how much Dustin makes. This had us quite upset and racking our brains for some solutions. (We are very blessed to have solutions). Anyway, yesterday the financial people called and we were able to get an adjusted monthly minimum based on extenuating circumstances. Praise God! But, for awhile we were sweating it out a bit.
In the midst of this, some friends really blessed us and went above and beyond. A friend delivered a card and a white rose in honor of Elizabeth and my step-sister and her family sent us a beautiful card and adorable Dinosaur outfit! It was also so funny because Dustin went to buy me these beautiful parenting scripture cards from Sara Vrooman (a friend who has an etsy shop) and someone had already purchased them for me! My cousin Sarah had them mailed to me! These have helped me reflect on God’s love and promises.
These things helped remind me that we are loved. We aren’t isolated (even in “isolation”) and God is bigger than our circumstances. The day the rose was dropped off I had been really sad and was thinking about Elizabeth. Today, when we opened the adorable outfit for Bella we had just gotten home from taking her for a shot, which is always no fun.
Thank you so much Rebekah, Sarah & family, and Anna, Danny, and Ev for the sweet reminder that others care.
Moving Forward & Summary
Life is slow and fast right now. Each day I wake up to this beautiful, smart, fun, little human in my room. I get to snuggle with her on the couch and see family. Even though she has a feeding tube and some health concerns, life is good.
She is growing at her own rate and hitting milestones. She has been sick but overcame it! We are looking forward to introducing baby foods and enjoying the holidays.
Today Bella got to see snow for the first time (from the window). She looked surprised at how bright the outside world looked. I looked at her and was so excited over how bright her future is. Even in the midst of heartache and hurts we will keep looking for the silver lining. We will keep pushing forward and living for those teeny tiny small special moments…what other way is there?
Love & Light,