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Two Months Old 5.2.23

On the second of May we celebrated two months with our sweet Gabriella. What a wild two months it has been…Sixty days doesn’t sound like a long time, but I feel like we have lived nine lives at this point ha. We are elated and relieved to be home. Though I can't help but look forward to the day we are on the other side of “Interstage” (her next surgery.) Caring for Gabby around the clock 24/7 plus the addition of her busy big sisters has made it difficult to find time to share a detailed update but here we go:

Life at home has been an adjustment, mostly wonderful, but yes full of anxieties. Gabby enjoys her mornings on the couch watching Bluey with Della and hanging with mom during the day. She has been giving the best smiles and showing off her darling pronounced dimple on her left cheek. She still naps quite a bit so we enjoy our time with her when she is alert. I knew Daisy would thrive in her “Oldest Sis” role by being extra helpful! She has mastered the diaper change, can change her outfits, and knows how to soothe her when my hands are full. My heart about melts watching her big sisters dote over their “Gabby Gurl” or “Gabby Goose” as they call her. Luckily they fully understand the importance of handwashing and as Della would say “Hana-tizer” before holding her. Daisy knows the ranges of what her oxygen level should be at and helps keep a close eye on the monitor, making a great case to be an excellent nurse someday.

One question that seeped into my mind occasionally is, Why would God allow this to happen to our Gabriella? I don’t think the answer is as simple as; "Corey and I are capable of handling this." Though that statement is not false, I do believe it’s a lot bigger than us alone. I wholeheartedly feel to the depths of my soul that our Gabriella Hope was sent to us as our messenger from God. She has taught us so much in the past two months. I've been touched by all the messages of inspiration she has given to others as well. She has fully lived up to her name we picked for her before we even knew about her CHD that means, “God is my strength.” Sure I worry around the clock about her, I check her pulse ox continuously throughout the night, and fly out of bed to check her when she makes alarming noises, but in those moments of delirium I find myself praying instead of feeling sorry for myself. My heart skips a beat every morning when I record her weight. On the days she doesn’t gain it’s hard not to panic, “Is there something wrong with her shunt? Is the blood not flowing right? Does she appear more purple than normal?” I try to make a cognitive effort to not let my mind drift to those negative spaces and question Him or Gabby for that matter, as it's simply easier to trust. The balancing act is trusting God, but also trusting my mothers intuition.

Being her main caretaker is a hefty responsibility I don’t take lightly. Aside from typical newborn care Gabby also has a g-tube button that needs to be cleaned every day, medications, her oxygen monitored around the clock periodically, she has to be weighed each day, and we have to watch for all the other red flags that can appear. I’ve found that putting my full faith into Him has in return granted me a semblance of peace. And in this current situation a tiny bit of Peace is everything to survive and Win the Day. If we handled all of our adversities with a lighter optimistic perspective and leaned on our faith more, I think the world would be a happier place. I also have come to accept that maybe not every situation and problem has a specific answer, but isn’t that the beauty of God’s works? If we knew the answer to everything the world would be a pretty boring place.

Gabby has taught us to not take a day for granted. We are grateful we have the opportunity to care for her at home, we are grateful we get to do “normal” baby things like: give her baths, take her on walks, snuggle her, watch her grow in the comfort of our home, breath the fresh Montana air, have her be held by her two amazing great grandma’s. Those are the biggest blessings of all. It would be a completely unrealistic reality to not ever have any problems in your life, we will have an eternity of a problematic free heaven. Though I’m certain we all crave a little heaven on earth problem’s simply not possible we must live each day as it is and face it. Each day with Gabby is a gift, it's insane to me our little girl technically only has “half a heart”, you would never know from the outside, she is our constant reminder of how good He is! She had her two month shots last week. With her big sisters I remember being stressed to the max, tylenol packed in the bag before the two month shot appointment and felt the dreaded agony of having a fussy baby for the remainder of the day. Gabby is tough as nails. She didn’t love the actual shots of course, but was quickly soothed and acted as if it was a normal day not needing any additional pain meds. Which in all honestly hurt my heart a little knowing she knows a greater pain than two month shots, but overall I was happy it didn’t phase our little warrior.

Our middle child Della asked me the other day, “Mom, is Gabby an Angel?” It stopped me dead in my tracks..I smiled at her as my chest filled with pride, “Yes Gabby is our angel.” She then asked me if God was in her heart. We had a big long conversation about it all and after I sat relishing our special moment and smiled. It’s in those instances I know this was part of his plan to grow all of our faith and build an early foundation for our little girls. Gabby has forever changed and impacted our lives more in two months than I could have ever dreamed of. I can feel God has big plans for her future and predict she will leave an everlasting impact on everyone she encounters. We may not ever have a clear answer of why this happened, but accepting our fate, making the most of it, taking time to grow and learn has helped get us this far.

Thankfully, her last check up in Colorado on April 26th went much better than her previous appointment. We received the official all clear and support we needed to return to Montana during interstage. We will be here now until her next surgery. We commonly get asked when her next surgery will be, but as of right now we don’t have a scheduled date. Typically babies that share her same physiology have the Glenn procedure performed closer to six months, but it can be done as early as 3 months of age. They will keep a close eye monitoring her shunt every other week with echos and as long as she continues to grow and her heart rate and oxygen all stay within her baseline we can tentatively plan for her next surgery to be sometime late July or early August.

While home in Billings she will see a healthcare provider every week. Last week we saw Gabby’s pediatrician and this next week we will see the cardiologist. Those specialists will be alternated every week. We will also see an immunologist for some additional testing at some point. Gabby’s feeding schedule has been revised to every four hours instead of every three which has been a MAJOR game changer. She still gets the same volume each day as she was getting, but we were trying to give her more time in between each feed to increase her natural hunger cues so she could increase her oral intake. The time between each feeding goes quickly, but it’s much more manageable than her previous schedule and she seems to be handling her feeds better (less yacking!) Right now her schedule looks like this..

6:00 A.M. 1/4th Baby Aspirin, .2ML Captopril

7:00 A.M. Feed

9:00 A.M. 1 Drop of Vitamin D3, .4ML Digoxin, .4ML Feurosemide (I try to weigh her every day at this time also)

11:00 A.M. Feed

2:00 P.M. .2 ML Captorpil

3:00 P.M. Feed

7:00 P.M. Feed

9:00 P.M. 4ML Digoxin, .4ML Feurosemide

10:00 P.M. .2ML Captopril

11:00 P.M. Feed

3:00 (skip feed gavauged with the 11 feed)

4:30 A.M. Clip Feed/Diaper change

Believe it or not we have actually eliminated one medication from the schedule so currently the above one isn’t as daunting as it may seem to manage. It does make a full day as I also have to pump every 3-4 hours along with juggling the big girls schedules. Our day’s revolve around Gabby’s schedule, but routine is good and we finally feel like we have our feet under us. I vowed to Corey I wasn’t going to let the anxiety of interstage steal our joy, though it’s stolen our sleep haha. Each day is a balancing act of giving our full care to Gabby and still living life fully with the big girls as best we can (germ free.) Communication and teamwork has been key to our survival thus far!! I’ll save the lecture on the importance of that subject for another blog!

Lastly, I will end with this. Aside from the obvious when we initially moved home I didn’t realize how much my heart needed it. Of course I missed my family and friends, and puppy dog, but I didn’t realize how much I missed seeing wide open fields, cows, our beautiful Montana skies, and the simple comfort and security of not being on high alert every time I step out of my car. You will never convince me there is any better place to live than rural America or Montana for that matter. When in the hospital I dreamed about what bringing Gabby to Montana would be like. Now that those dreams have become a reality somedays I want to pinch myself to make sure it’s all real. We are incredibly grateful to celebrate her two-month milestone and it’s been icing on the cake to do so from HOME!

If you made it this far, thank you. Thank you for your invested interest and prayers in our precious girl. We sure love her and hope she has inspired you as she has us to be strong too! We continue to pray she grows. We pray her oxygen and heart rate stay within her baseline. We pray we make it from now until her Glenn with grace and ease.

Thanks for following along.


2 comentarios

God has such a wondrous way of touching our lives --- deeply, & Miss Gabby certainly is wondrous! When you go through tough, heart-renching times, the good times seem even " Gooder!" And as you know, the GodWinks are so vivid! Love you guys! 💞

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Judy Fulghum
Judy Fulghum
09 may 2023

Was not difficult to read the full blog,Kayleen. One paragraph makes you want the next.

Prayers, hugs, and love to your family.

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Hi, thanks for stopping by!

Hey thanks for stopping by! My name is Kayleen, I am fairly new to the heart mom community.  We found out at our 20 week anatomy scan that our baby girl has a severe Congenital Heart Disease called HLHS in October of 2022. 

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