How Quickly Things Change

I've neglected the Hulse Home blog for a couple of months, and just reread my last posting prior to writing this one. How quickly things change! In February, we were just coming off of the elating news that Timmy's cardiac condition was so stable that his projected next surgery was far, far down the road. Now we find ourselves far, far down that road already. It is early May and we are in the process of gearing up for Timmy's next open heart surgery.

He looks like a healthy little Super Trooper, all rosy and round. Timmy has been growing steadily, albeit still on tube feedings and resisting oral feeds despite months of occupational therapy. He also still does daily battle with his reflux, and sometimes seems to spit up as much or more than he takes in. Never-the-less, he is now a hefty little 19 lb. tanker, with chubby little arms and legs, and cheeks that look as if he is hiding chestnuts away for winter. Unfortunately, the oxygen levels in his blood have been falling steadily, and the concern is that the band placed on his pulmonary artery to prevent too much backflow through his surgically altered pulmonary valve is also preventing sufficient forward flow to the lungs. His shunt has been effectively making up the difference until lately, and the dropping O2 levels indicate that he is most likely outgrowing the shunt. In any case, it is back to the operating table sometime later this month.



Yesterday Timmy went through a day in the catheterization laboratory at Children's, receiving some pre-surgery procedures including a 3D-ECHOcardiograph and a laproscopic imaging done through a catheter. He spent the day at Children's smiling and interacting happily with everyone he met, flashing his big blue eyes and doing what my niece Brittany refers to as "getting his flirt on." He charmed and disarmed as we made our way through the day, and his behavior helped us to be more relaxed and less worried. When he came back from the cath lab to the recovery area to greet us, he practically seemed to sit up and call out "Hi, Mommy! Hi, Daddy! Look at me!" Someone in the cardiology recovery area had apparently given him a handmade, beautiful fleece blanket, and someone else had given him a brand new teddy bear, so he was apparently getting his flirt on behind the scenes with the nurses, too! He giggled and wiggled and played with his feet when he was supposed to be stretched out resting. He slept the entire drive back to Wenatchee, and it wasn't until later in the night that his discomfort gave rise to whimpering and crying. He was pretty unhappy all night and most of the morning, but is back to his smiley self this afternoon as I write this.



We're now waiting to hear from the cardiac team after they conference on their proposed strategy for his next open heart surgery, which will follow in the weeks to come. We won't find out when it is scheduled for another week or so, depending on the results of the conference. We'll try to spend these next week remembering how well Timothy approaches the challenges of surgery, and hopeful for an outcome that will bring him better health, more oxygen, and even greater joy.

6 months old!

Could it be possible that Timmy is already 6 months old?!? The time goes by soooooooooooo fast! He is growing like crazy and his doctor most recently described him as "husky." The good news is that his cardiac condition is stable and looking good at the moment. His cardiologist predicted that he may not need a second open-heart surgery until he is a year old or more, when the prediction had previously been for some time between 6-9 months. This was great news! The bigger and stronger that he is, the bigger and stronger that his heart will be heading into surgery. It was also a tremendous relief to learn that we are not right on the threshold of another major operation with all of that stress and scariness upon us already. Timmy did just undergo a minor surgery a few weeks ago, however, because his feeding situation has not been progessing as we had hoped. He still will not take oral feeds, and the doctors have labelled his condition "extreme oral aversion." Although he was gaining weight and growing well with the Nasal Gastric tube, other complications arose, such as a severe struggle with reflux. We'd hoped that Timmy would be taking his food orally by now and speculated that the prolonged use of the NG tube may have been contributing to his oral aversion. So, we decided to replace his NG tube with a gastric tube called "a Mickey button." It is a semi-permanent device that is surgically placed directly in his stomach, and he receives his feeds using a feeding pump connected to this g-tube. He is willing to take small spoonfuls of milk orally, and his medications as well, so we are hopeful that he'll make progress towards oral feeding with continued patience and dedicated work. We have an Occupational Therapist who comes to the house once a week and works with me on how to procede with his feedings. Unfortunately, Timmy's struggle with reflux has not improved by the placement of the g-tube, but there remains the hope that he may simply outgrow the reflux shortly. If not, there is another surgical procedure that might become necessary. We'll do whatever it takes to keep him growing and grooving. Despite his struggles, he is a very smiley, happy little guy most of the time who is a joy to be around.

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.