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!

Fall Has Fallen

Not surprisingly, my "once-a-week" blogging efforts are coming together about once a month! Everything is subject to the whims and desires of our little 12-week old dictator, cute that he is. My father, and now my husband, like to joke about something that my dad affectionately calls "W.O.W. time" which stands for "Waiting on Wendy." We have learned that W.O.W. time is nothing compared to W.O.T. time, because waiting on Timmy is what we are all about now, both in the sense of time-delay and in the sense of devoted service. It's a pleasure, though, and Timmy has brought us many joys this past month. We've become addicted to his infectious smiling sessions, and an outbreak of them can cause us to stop whatever we are doing to gather around him and coo at him ridiculously in an effort to elicit yet more smiles. We celebrated his Grandpa Frank's birthday in October, and Timmy gave Grandpa a framed photo of himself as a birthday gift. Grandpa Jerry added to the festivities of the month by inviting us up to Leavenworth to listen to him play in a German band called Musikkappelle at Oktoberfest. We were additionally treated to a visit from Grandpi Don and Grandma Carolyn later on in the month. They delighted Timmy with their musical antics and introduced him to such songs as "Rubber Tree Plant" and "A, You're Adorable." The grandparents weren't the only special guest visitors that Timmy had this month, as his Auntie Brittany and Cousin Ava Rose also came to Wenatchee to meet and love on him. Ava wasn't sure what to think at first, but Timmy was absolutely fascinated by his pretty cousin. He couldn't take his eyes off of her! She warmed up pretty quickly, even holding Timmy all by herself and posing for pictures with him. The other highlight of the month was Timmy's First Halloween. We dressed him up like a little pumpkin, and he proudly greeted the Trick-or-Treaters who came to our door, "helping" Mommy to give out candy by snuggling in her arms while she filled their candy bags.

We've got another slideshow up on PhotoBucket with highlights from the last month or so. Please click on the View All Images button below:

All Is Well on the Home Front

We had our first follow-up appointment for Timmy over at Children's in Seattle on Friday. After a couple of hours of packing and preparing for a day away from our little nest, a two-and-a-half hour drive, parking, a 20 minute registration process and a fairly long wait, we saw the doctor for 10 minutes and he pronounced Timmy to be fine for now. It seemed like much ado about nothing, but it was very reassuring to be told that Timmy's recovery continues to go well. The great news that followed was that future check-ups will be entrusted to the local Wenatchee cardiologist until the next surgery brings us back over to Seattle. The autumn colors were beautiful but, as much as we enjoyed the drive, we're glad that we won't have to do it on a monthly basis. So, all appears to be well on the home front at the moment.

Welcome Home, Timmy

We'd like to share a slideshow of Timmy's homecoming pictures but I haven't been able to figure out how to put one directly onto this site, so I have one uploaded on a photo sharing site called Photobucket. Please click on the "view all images" button that follows and you'll be able to see the slideshow on Photobucket.

Welcome to the Hulse Home

It was such a pleasure to have regular contact with you all last month on our son Timothy's Caring Bridge website. One of the most meaningful parts of our day while we were at the hospital was logging-on to Timmy's website and reading inspiring messages from our friends and family. Now that we've been home for a few weeks, we're missing you! We'd still like to stay in touch and have a format for giving you updates on Timmy, as well as about life in general in the Hulse home, but we'd like to transition off of the hospital's web server. So, we are going to take a stab at "blogging." We plan to update this blog once a week or so, and to share recent pictures and stories about life with the little guy, along with whatever other news we may have. We look forward to hearing from all of you!