Timmy's First Christmas

Christmas Eve, and we let Timmy open one present :o) Shown here with his Christmas story and Reindeer Finger Puppet books from hockey team buddy, Nancy #23.


From shortest to tallest, the Hulse family on Christmas Eve.


Daddy and Timmy on Christmas morning, getting into Timmy's hand-knit stocking from his Auntie Daneen.


Little boy blue: cozy blue blanket (parents received a matching one!) and elephant (parents did not receive a matching one) from Wendy's cousins Terisa, Bill, and Cherie Owen.


Mini-hockey player #3 sporting his new snow suit from Grandma Nancy.

Heads Up! It's Timothy Jared at 4 months old!

Look who has proudly discovered what his neck muscles can do!

Timmy's First Snow

Wenatchee has become a Winter Wonderland just in time for Christmas, and with the transformation of the landscape comes the joy and delight in a little boy's eyes at seeing his first snow. His Great Aunt Betty (Wendy's mom's big sister) anticipated the need for a warm, snuggly baby snow suit and somehow managed to locate one in the balmy deserts of Southern California where she lives to send to Timmy! Thanks, Aunt Betty.

Golden Days

December has been good to us thus far and we're enjoying some golden days in Timmy's babyhood. The reflux is being controlled nicely by a change in his feeding routine that his doctor made just before Thanksgiving. He now receives a constant, low-level night time drip feed (20 ml/hr for 10 hours) and smaller, more frequent feeds during the day (easier to keep down--less to lose each time if it doesn't stay down). Although this means that we are feeding him every two hours during the day and have to limit our outings to the one-hour window between feeds, it also means that he is sleeping for 10 uninterrupted hours at night--more than adequate compensation for the tight daily schedule! Timmy has been smiley, relaxed, and happy, and so have mom and dad. It feels as if we've been on vacation! It's been great to see him feeling so good, gaining weight nicely, and generally enjoying himself.

Thanksgiving Day

Timmy's first Thanksgiving was accomplished with a good deal of compromise and good will on the part of his extended family, all of whom rallied to relocate the family gathering to Wenatchee so that Timmy didn't have to travel. After a rough start to the week (Timmy ended up in the hospital Monday night for a brief interval of observation intended to manage adjustments to his feeding routine and get control of his reflux), a relaxed time spent enjoying delicious food (that was prepared in Spokane and Ephrata and transported to us) with our loved ones was just what the doctor ordered. Timmy spent the better part of the day holed up in his grandparents' room upstairs, avoiding exposure to those who were battling colds, but didn't suffer too much from his isolation (Grandma Carolyn manned the room and kept Timmy well cuddled.) Fortunately, this week has seen an improvement over the last one, and feeding modifications have reduced but not eliminated Timmy's reflux. Our doctor thinks that we will most likely end up needing to have a gastric tube surgically inserted in Timmy's tummy, but for now we are trying all that we can to avoid such measures and make the nasal-gastric tube work for him as long as possible. With so many blessings to be thankful for, this most recent bump in the road must certainly be surmountable. We give thanks for the beautiful, brave, precious little baby boy entrusted to our care, and hope that we can continue to be as strong and patient as he is while we learn how to best provide for his needs.

One Step Forward, Two Steps Back

As was so often the case while Timmy was in the hospital, every time we celebrated some small victory in his progress, something slipped or some new challenge emerged. Although the hope is that the healing momentum will continue, and for every two steps forward there is no more than one step back, sometimes it seems to be the other way around.

The reflux medication, after promising beginnings, isn't working, and Timmy is spitting up most of what he is taking in. When he spits up, the feeding tube often gets coughed up along with the milk and we have to reinsert it multiple times a day, further triggering his gag reflex and irritating his throat, leading to more reflux. We're currently trying an additional medication, but with little luck so far. The occupational therapist who is working with us to try to transition Timmy off of his feeding tube wants to halt our efforts at oral feeding until the reflux improves, but prolonged dependance on the feeding tube seems to be one of the causes of the reflux in the first place. One step forward, two steps back. Although his doctors are trying to maintain his growth at an ounce a day, it's been over a week since Timmy has gained any weight at all. Dave and I jump every time Timmy coughs, looming over him with cloth diapers positioned to catch his spit-up, at the ready to replace an ejected feeding tube and comfort a distraught little boy. As a result, we're both edgy and strung out, trying to remember to be nice to each other and that this, too, shall pass.

Additionally, Timmy's last cardiology appointment revealed that the band that was surgically placed around his pulmonary artery to reduce back flow through the pulmonary valve, is very tight, and is actually restricting forward blood flow, which creates back flow through the tricusped valve. Again, the same damn thing designed to fix a problem has created another unfixable problem. One step forward, two steps back. When pressed to tell us what this means for Timmy, the cardiologist came up short. It may mean that the next surgery is going to come up more quickly than we had hoped, or it may mean nothing other than the issue will need to be addressed during the next surgery, which we knew all along. It definitely means that we're worrying more and sleeping less.

3 MONTHS OLD!

We celebrated a milestone this weekend: Timmy's age is no longer counted in weeks and is offically tracked in months now. Three of them, to be exact. It was a bittersweet experience, packing away all of his darling newborn outfits knowing that he'll never be that little again, yet proud of his nice, healthy growth. It has been a time of discovery for Timmy. He has discovered his hands. He likes to put them together, to rub his face with them, to stare at them, and, best of all, to shove them in his mouth. He figured out how to pronounce his first consonant, so our budding linguist has added "G" to his repetoire of vowel sound "ah's" and "oo's". Nancy is convinced that "Gah" stands for Grandma but Frank and my Dad swear it sounds like "Grandpa." Timothy has learned to end the debate with another of his recent discoveries: a smiling session. He grins away, occassionally blowing a little spit bubble, another new development, and pretty soon nobody cares what his first word will be (certainly it will be "mama" anyway). On the medical front, things remain stable and hopeful, with regular doctor's appointments to keep track of each minor development. There was an episode of reflux that slowed down his weight gain but is now under control with medication. There was another scare with rapid respiration indicating fluid retention in the lungs, but that was stabilized as well with an increased dose of his diuretic. He is now a 13 lb. butterball of a baby, and a happy little guy most of the time. It's unreal how quickly it goes!