How Are Things?

Yesterday (as I edit this, 2 days ago) Isabella turned 7 months old! This is such a crazy milestone! We are over 1/2 way through her first year. We spent her first 3 1/2 months in the NICU and have been able to celebrate 4, 5, 6, and now 7 at home! When your child is medically fragile or had a rough start to life, you celebrate every milestone possible!

So, where are things? How is Isabella doing? I get this question (as does everyone who knows Bella well) asked often. It’s a hard question to answer. The answer isn’t necessarily “bad” but it’s not quite “great.” I usually say she’s a very happy and content baby. She loves life and is growing. Then I say that she is struggling with excessive vomiting and that there are some health concerns. This is a great summary. It’s kind of like “Thank you for asking! We’re OK. She’s OK. Life is so great at home. But, please don’t leave me off your prayer list yet. We’re still in it. We’re living and loving it but also struggling sometimes.” I don’t typically even begin to explain the stress of the hour-to-two-hour feeds, the unending  vomit laundry, the financial stress, the lack of sleep, or grieving  not being able to have more children. But I’m so thankful and happy and grateful. It’s a mixed bag of emotions.

Making Myself Post An Update

I had a few minutes to write today. 30 to be exact. As I look up at the clock I see that Bella’s next feed begins at 7:00pm. She’s playing peacefully in her rock n’ play with her turtle toy, wrapped up in a pretty crocheted pink blanket.

I didn’t want to write. Even though I know I always feel better and I know others want to know how Bella’s evaluation went…I’d rather lay back on the couch. I pulled up my blog and it didn’t come up. Probably some simple technical error Dustin will fix when we gets home from having coffee with a good friend.

It seems as if there’s a million reasons to NOT write, but I realize and have been inspired by a book (Girl Wash Your Face by Rachel Hollis) I’m reading to push through the roadblocks and make this a priority. That being said, Bella’s beginning to screech a bit so my 30 minutes may be less.

Let’s jump right in!

NICU Established Pediatric Development Assessment

Yesterday we headed up to Akron as a family! Dustin usually has to work but decided to take the day off since it was a bigger day than usual and we had Bella’s Neonatal Follow-Up Clinic.

The night before and morning were ROUGH. Bella vomitted  so much on the way there, soaking her sleeper and causing her to cough and retch. It was really heartbreaking. She finally fell asleep as we jumped on the highway. The sun didn’t come up until we began to reach Akron. Each of us were lucky to get 4 hours of sleep. We ate Burger King breakfast and drank coffee. I tried not to nod off in the back seat with Bella. We couldn’t find anything good on the radio either.

First up was Bella’s feed. We got unloaded and headed into Akron Children’s Hospital. Bella needed her feed before her appointment so we were there early. While signing in, we got to run into one of our primary nurses, Jackie, who took our family on when Bella was only 3 days old! I was so embarrassed Bella (and us) looked like a hot mess, but she was so encouraging and loved seeing how chubby Bella has become. Also, she’s pregnant! Her little one is passed the gestational age of Bella when she met her. Crazy!

Next, we sleepily headed up to the floor and began prepping her feed. We all went into the family bathroom and I also changed her into a cute outfit. Bella was hungry. Surprisingly the nurses came out after we got her feed ready and said they could put us in a room and get her ready for the appointment! How great! So we ended up getting in right away. We saw a nurse that did Bella’s weight and vitals and then another nurse that did a full interview about Bella and her health.

We had begun her feed but warned the nurses of her vomiting. After she’d gotten some food, we held her and the nurse began her testing. Holding a colored ring in front of her, tracking her eyes, etc. At this point Bella began projectile vomiting over the office. She was retching and lost her whole feed. Dustin’s on the floor trying to mop up the puddles of vomit and I’m soaked and trying to catch it in a burp cloth. The nurse looked shocked. She asked “is this what it’s like all the time?” We nodded and I began to cry. Of course it was agreed upon that we needed to continue testing and solving this massive issue. The vomiting aside, things went great!

We got Bella cleaned up (and myself a bit) and prepared for the doctor. Doctor Langkamp came in and was super friendly. She had another doctor that was learning with her. She immediately took to Bella and Bella soaked up the attention. Laying on the exam table, Isabella was tested in different ways. The doctor held her up, checked her reflexes, checked her eyes, busted out colored toys to Bella’s delight and “talked” with her as she  babbled and cooed.

She asked us if we had any concerns.

Yes. A Million.

I tried to think back to my list and zero in on the most important things.

Question: The vomiting. Could this be an underlying syndrome? Something like a bigger disorder. Answer: That’s highly unlikely.

Question: Her ears (one is folded over). Could this be a sign of a genetic issue? Answer: Probably not, no. But you’re past the time for a quick fix. She’d probably need surgery…I responded that we didn’t mind it. I actually find it cute. We just wanted to make sure it wasn’t an issue.

Question: How will we know if she has any neurological disorders? Answer: Well, we won’t really know until 12 months. We don’t typically see issues this early on. But things are looking really great and her risk is low.

Question: Her tongue and lip look tied. We had a referral to a dentist but that didn’t sit well with us. What are your thoughts? Answer: She can put her tongue out great. It could certainly be attached in the back, but in my years of experience this isn’t an issue at all. There’s no need to have this looked at further.

Question: Bella’s getting big and more active. She doesn’t want to be held during feeds but needs to sit upright or else she vomits and loses food. Any chair suggestions? Answer: Her Physical Therapists like a Fisher Price Sit Me Up Chair. (Added to my list!)

Question: Can you think of any other tests Gastroenterology could be doing (for the vomiting)? Answer: No. It’s not my area of expertise. They do a great job (which we agreed with), but I’m surprised she’s not on a medication to help empty her stomach quicker. We will ask about this next.

The Hard Question

At the end of the assessment. The doctor sat and reviewed everything with us. Of course she wanted Bella to be bigger, but she explained she was very impressed with Bella and that we were doing everything right. I’m a gold star kinda gal…so this made me feel good. Although in my mind I reminded myself that this wasn’t about US, this was about God and his mighty work in her. Although I work with Bella and try to be a good steward of my time with her and being her momma, ultimately it’s God’s mercy and love that helps Bella grow and develop. Also, if she were doing worse for wear…that wouldn’t be a direct reflection of our bad parenting or lack of faith or God’s lack of love for Bella. It’s vital to keep these things in mind when parenting a child with medical needs.

I asked the question I was most scared about again, only more directly.

Will Bella have any cognitive issues or delays?

Answer: We can’t say for sure, but things look good and I wouldn’t worry about it. Honestly, you have plenty enough to worry about. (Amen, sister. I like this lady already).

I probed a little bit further. She explained we probably wouldn’t see issues until about 12 months. But that things looked good. Having her have a brain MRI earlier on also gives me some confidence, too. (She had one in NICU).

We were referred for a (routine) hearing test with audiology (yet another specialist) and advised to keep up with GI. Dr. Langkamp said “Enjoy her, she’s a delight.” Bella kept grinning and babbling all the way out.

(TLDR) A Quick Summary

Isabella impressed the Pediatric Development Doctor. She is still small and is in the less than 1% for her age but she is making excellent progress in developments. The doctor loved how interactive she was and seemed really affirmative. Later, we received a letter said she scored a 9/11 for the Bayley Infant Neurodevelopmental Screening. This puts her at low to moderate risk. She was able to do a lot of the activities but struggled to sit with slight support for 10 seconds and had no interest in their white little pellet.

In the doctor’s own words:

Currently Bella sees:

A: Primary Pediatrician -Pediatric Dermatologist -Eye Doctor – Audiologist  – Speech Therapist – Dietician – Developmental Pediatric Doctor – Surgeon – GI Specialist

At birth she was 1 lb 7 ounces. Yesterday she was over 10 1/2 lbs!

Her BMI is 14.97 and is in the 9th percentile! (She’s proportionate!)

Her weight, head circumference and height are all in the less than 1%.

So, there’s the current update.

We actually headed over to Pediatric Dermatology after for a general follow-up …but that’s an update for another day.

Thanks for joining in the crazy. We love you,

Tiffany