7/27 11 weeks old! An update!

Good evening everyone! So sorry that I haven’t been blogging much recently and I apologies. Here are some things that have happened! Walker is a growing boy he is now 12 pounds 9 ounces and is gaining a pound about every week right now. We were very fortunate this past week to have Aunt Susan come to the house and stayed for 5 days to help us with Walker and let Brandi get some sleep at night. You will see she made a blog post that is included in this post. We can’t thank her enough for what she did for us and are incredibly grateful for her and what she did for us in a time where we were both getting pretty tired and the tanks were running on fumes. The little guy is strong and is keeping us on our toes everyday. I will let aunt Susan’s post give you all the rest of the details for the past couple weeks because she describes everything so much better than I could. Love you all.

-Walker, Brandi, Janet, Susan, Tyler

A Day in the Life of Walker the Warrior

         … from Aunt Susan

This past week I had the privilege to spend some time with baby Walker and help support Tyler and Brandi with a little respite: mainly some consecutive nights of a full night’s sleep for each of them - and also some time in the day for Brandi to finish some household projects that have been put on hold since Walker’s unexpected early arrival on May 11th. 

Within the first 24 hours, I said, “Man, you guys need a full-time nurse!” And by the end of the five days, I fully realized that unless you’re living in it daily, you don’t fully realize what a day in the life of loving and caring for Walker is like - and it’s easy to understand why: Tyler and Brandi are so busy living it they don’t have time to explain and share how they’re doing it. Not only that, but Walker’s rigorous needs and schedules are challenging enough, let alone talking and writing about it. So I offered to write a little update about what Walker’s daily home life is like to give everyone a picture and understanding of what it looks like. Tyler accepted without knowing how long this would be. 🤣

It’s challenging to capture so much living on a blog spot. Oh my gosh, I have so much to share and yet, inevitably, I will leave so much out … it can’t be helped. 

First, Tyler did an excellent job of “crash course” teaching and training me - starting with Walker’s feeding using the peg tube and the feeding pump; and second, how to give Walker’s medications through the peg tube port. And Brandi has done an excellent job of creating a detailed, 3-ring notebook of all of Walker’s care needs, including writing out step-by-step refrigerator notes of how to operate the feeding pump and a list of Walker’s daily medication times and doses. I made myself a daily “cheat sheet” to follow; and as I predicted when I first started, it took me five days to begin to feel familiar and somewhat confident and settled into Walker’s daily care routine. 

Number crunching: by the numbers. Walker has (8) feeding sessions in a 24 hour period and (3) medication times in a 24 hour period, with five different medications and supplements. One medication is included with a feeding session and the other (2) are at separate times in between feedings. Also at daily diaper change times the peg tube tummy area is cleaned and a new sterile gauze is replaced; and eye drops are given 2X daily. Walker’s eyes do not close completely when he sleeps, the eye drops help keep his eyes lubricated. Walker is currently intaking 101 mL of formula per eating session. (About 3.5 oz) Each feeding session by feeding tube takes about an hour to complete. The feeding times vary if Walker is bottle feeding for 30 minutes first, then afterwards the remaining amount of formula is fed by the feeding tube. On some days Walker was very alert and awake and bottle fed up to 50 to 70 mL of formula in 30 minutes; other times he was too sleepy to be bottle fed. Aspiration is a high risk so being awake and alert is critical! Side note on bottle feeding: Walker doesn’t burp very easily (at least not yet, the bottle feeding is new & just beginning in small steps) and sometimes the tummy air causes him great discomfort. This is when a PEG procedure called “venting” with an open syringe is used by being connected to the PEG, allowing air to come out. Sometimes the air “pops” out and sometimes you see the air bubbles fill up the syringe. 

Through the night at 12AM, 3AM, 6AM, Walker is fed by the feeding tube. During this time he is comfortably swaddled up like a burrito and generally sleeps soundly through the night. Also at night Walker is monitored by a sensor medically taped to his left foot for his SPO2 (oxygen) levels and blood pressure rates. Some nights, the sensor alarmed hourly - and one night it alarmed up to five times in an hour! After the five times, I replaced the sensor tape and it corrected. Some nights there were only one to two alarms, but it always corrected itself by the time I frantically jumped up to look and see what was going on. It was always the SPO2 levels that alarmed, going below 90; never the blood pressure rising over 180, thank goodness. 

Tyler says the low SPO2 alarms are most likely from sleep apnea associated with Apert Syndrome. Also, sometimes through the night and/or during the day, the nasal aspirator is used to suction out mucus secretions to help Walker breathe more easily and to sleep better. He is used to this procedure and sleeps through the noise and annoyance. Lastly, by the numbers, it has to be said that no one taking care of Walker ever gets more than two hours of sleep at a single time in a 24 hour period - and even then, two hours is a BIG MAYBE due to time spent prepping for the next feeding and medication’s, and/or being awakened by the sensor alarms. Realistically, at best anyone might be able to get 1 to 1.5 hours of solid(🤷‍♀️) sleep at a time between diapering, feedings, medications, and alarms. Add to that: during the daytime include phone calls to and from doctors offices, pharmacy, insurance companies, feeding therapy and in-home visits, and many scheduled in office appointments at Seattle Children’s, Everett Children’s, or with his PCP family doctor in Smokey Point. And then there’s also housework yard work, laundry, cooking, etc. 

One of my favorite daily routines was unswaddling Walker in the morning and watching him stretch out his arms, sometimes both spread straight out to the sides and often both up next to the sides of his head. Brandi says she sleeps like that, too. 😉

The five days with Walker included highlights of attending doctor appointments and seeing the care and compassion from all of his doctors and medical assistants. (Another challenging factor to consider for office appointments is feeding & medication times - and taking all the necessary supplies: formula, food pump, medication(s), pill crusher & water to mix. One office kindly let us stay in the examination room to take care of these things before we left). At Walker’s orthopedic appointment, x-rays were taken of his feet and hands to determine next step possibilities. Walker was NOT happy with the x-ray procedures and made it known VERY loudly with protest, requiring (3) people to assist. But the results were worth it. Both of Walker’s hands have bones for each finger, making him a candidate for separating his fingers in his future. This was definitely a “doctor’s office happy tears” moment. 

At Walker’s PCP appointment. Walker had his 2-month immunizations. Tylenol was added to his nighttime regimen - and let me say: Walker is truly a Warrior and he warriored his way through it. 

Other highlights: 

** Tyler met a milestone and completed his first full week of being on the job every day of the week since May 11. Way to go Tyler! However, it’s a double edge sword for Tyler: It’s good to be at work each day, but he’s also missing out on Walker’s daily happenings and medical appointments. 

** Brandi got her “she room” back in order and has her space again. 🙌 And she also able to sort through and organized baby clothes, putting away the newborns sizes and moving on to the 0 to 3 months. He’s currently 12.8lbs & 22(?)inches. (Correct me if I’m wrong, Brandi!) 

** We know Walker has good hearing because he startles and sometimes cries easily at sounds he’s not familiar with. The high pitch beeps from the feeding pump, monitor alarms, and nasal aspiration don’t phase him. 

** Walker is also making mouth formations like he’s getting ready to coo. He’s not quite there yet, but the mouth formations are and we were just waiting for some cooling sounds to come out. It’s pretty exciting. 

Bottom line: I can never do justice for this (5) days with Walker with mere words. It was a heartfelt experience, one that I can’t even think about without tears for the precious little bundle of joy he is - and tears for knowing how great the many needs are, and knowing that someone hasn’t slept for more than 1.5 hours at a time. 

Tyler and Brandi are amazing and figuring it out. Tyler takes over Walker’s care when he comes home from work so Brandi can get some sleep for a while. And then Brandi takes over Walker’s care at night so Tyler can sleep before he goes to work. Brandi most likely cat naps for short times during the day, if Walker is. 

This Aunt Susan‘s heart is very full of joy for the precious baby boy Walker is and grateful for the time spent with him. My heart is full of admiration for Tyler and Brandi for the courage and strength doing all the hard things not many are fully aware and know about. Tyler‘s cousin, Jill, said regarding Walker finally being home from the hospital, everyone together all in one place, “Also there isn’t a “call button” at home.” True. There isn’t a hospital nurse’s station call button at home, but there is a call button at home by a different definition: like committed and continued support from family and friends, a caring and compassionate medical team, little Walker being loved and care for by his parents and family and friends and his team of medical doctors and medical assistants. 

If you are anyone who has shared a kind word or a gift of love and support, a meal or a gift card for a meal, a card or text message with encouraging words, an opportunity for a night out, a prayer, or financial support … you are a call button, thank you. ❤️ The need is still great and most likely will be for Walker’s first year, especially through the surgery(s). Keep praying deep. 🙏

P.S. All in all, Walker is a really good baby! … he’s pretty chill almost always, except for x-rays & tummy air. His lesser favorite time & place is sometimes the changing table because he gets messed with the most there: diapering, PEG cleaning, eye drops, clothes changing. He likes to kick his feet & legs and moves his arms around a lot. Walker almost has his hands & fingers to his mouth: so close! He likes his floor time & kitchen time, and swing time - and I’m pretty sure he gave a thumbs up to our listening tribute to Ozzy Osborne’s, “No More Tears.” 👍