Grace Unhinged --
A mom's daily ramblings of raising a daughter and three sons. Young adults, twin boys, a farm with goats to chickens, gardening and quilting, work and my sweet husband especially. Taking a day at a time and by the grace of God, we make it thru.
We have been trying to get Tommy to drink a bottle by mouth. Last week while we were at Children's hospital the OT there started him on a sippy cup. This week we have met with our therapists here and we are trying the haberman feeder. Each day we spend approximately 20 minutes every three hours working with Tommy in a happy and supportive way on trying to accept the haberman feeder. He usually takes 10-20 cc by mouth and the remaining 115 cc we pump into his ng tube.
While all this seems like a reasonable routine and accomodation for Tommy's needs, there is something so emotional for myself about not being able to feed my baby. These efforts coupled with an assessment of his cognitive, motor and social development that ranked him at a 60% delay seemed to overwhelm this momma this week. I cried for hours. Every day. Still cannot adequately state how emotional this is to me. I can remember in preparation for heart surgery, Tommy couldn't have his feedings for almost 10 hours prior to surgery. He was hungry. He cried. Even if I wanted to I couldn't feed him because his ng tube wasn't there and he doesn't take a bottle. As his mommy I feel the need to solve the problem and am now realizing the overwhelming challenges in that problem.
Our daily routine continues with trying the haberman feeder every three hours and pureed foods on a spoon twice a day. Tommy will eat when he is ready and with gentle prodding. Tommy loves to 'growl' when he has had enough gentle prodding. That is the sign for mommy and daddy to start the feeding pump.
I welcome advice (especially from DS or Hirschprung parents).
Tomorrow is a big day for our friend Chelsey Ebert. She was diagnosed with pelvic cancer in March. Even though she is only 17 years old, she has the strength of someone much older ... and did I mention her BEAUTIFUL smile? Please include Chelsey in your prayers. She has surgery tomorrow. Follow her blog for updates.
Yep. We are home! I know that many of you who read this website know exactly how we feel to be home with Tommy. Tommy is sleeping in his crib and Liam is not far behind.
Tommy and Liam enjoyed an afternoon visit from Aunt Deb/Uncle Rob and gang o'four... Micheal, Robert and big sista Hannah and big brother Nate (officially now an 8th grader and a 7th grader). To have all four kids home is incredible. To have groceries brought to us today, our lawn mowed, a generous gift (M&R!) and our animals cared for.... we have to thank God for placing all of you friends in our life.
We will continue to update this website with Tommy's accomplishments (and our family). Thanks for all the prayers and support!
Hello friends! I have already tried my 'sippy cup' today with 10 cc of success, yummmmmy! Mom and Dad think it's funny that I have no time to try a bottle and enjoy the sippy cup better. I'm trying to tell them I'm a bigger boy than they think.
The right chest drainage tube was removed today as not much fluid was trickling out anymore. Tommy still has his left chest drainage tube. His ICU nurses are visiting him on the floor ward which mommy/daddy call 'tommy's fan club'. Tommy has HUGE smiles for all visitors.
We learned today during an echocardiogram that his mitral valve repair didn't produce the best results. This is a common piece to the AV canal heart repair that doesn't get the best results. So, Tommy is going home on a new med called captopril which will help his heart regulate the volume of blood that gets 'backwashed' thru the mitral valve by mistake. This won't limit his activities or long term recovery.
Thanks to all of our friends and family for support (thanks to the Reids for a yummy goody basket). We are terribly homesick. We know that Nora/Dave and aunt Debbie (and troop) are taking good care of our home, thank you all! And big sister Hannah and big brother Nate have their last day of school tomorrow... hooray! Miss you all (sniff, sniff). I will try to locate the camera tonight and post some new pictures.
Tommy hasn't slept since Tuesday night. All day Wednesday... no naps! He has lots of energy since his heart repair. Tommy played with Daddy and Liam lots yesterday. Grandma Dorothy visited and brought two different sizes of O Balls (really easy for kids with low muscle tone to hold) and Tommy put those to work right away. Sometimes he even had a ball in each hand. Pastor Dick visited too! Mommy is heading off to bed now while Tommy is finally off to sleep. We will try to post pictures soon.
Tommy still has his chest tubes draining the plural infusions. A grand total of nearly 600 cc's of fluid has come from his chest. We have learned through tests of that fluid that his lymph system was accidentally cut during the AV canal repair. The lymph system has been oozing fluids (in addition to the fluids that accumulated in his chest due to the inflamation of the surgery itself). So, Tommy now gets a formula that has a different type of fat molecule so it doesn't get secreted into his lymph system and back into his chest. Mommy hasn't told Tommy that his new formula stinks really bad! Hopefully this will help his chest fluids decrease.
We were transfered to the floor ward today. Yippee! Tommy LOVED the ride in his crib. He cooed at most of the ceiling lights on the way from the ICU to his floor room. Once there he had a big grin for grandpa. Both grandma's are here today too and snuggling with Tommy (and of course Liam).
Tommy looks SO good! He was extubated this morning, breathes on his own, big green eyes wide open, coo's and moves all around. His color is nice and pink and his only pain relief is motrin/tylenol. Mommy had a few hours of cuddling time with Tommy in a rocking chair. Daddy is playing with Tommy now.
This afternoon an occupational therapist stopped by to assess Tommy's eating "dislikes". Since Tommy has received all his food thru his nasal gastric tube (six months worth) he has an unfortunate oral aversion now. But with a 'fixed' heart he has more energy to suck on a pacifier and eventually try a bottle. The OT made a few strides with the pacifier and mommy/daddy have plenty of homework now with Tom and a pacifier.
We had a set back this morning. Tommy is back on the ventilator. Chest tubes were inserted for drainage and 180 cc of fluid came out of his chest! He is very well sedated now and mommy has a hard time not touching him (even a touch on his hand is too much). This is a common set back for open heart surgery. Even though the surgery was a success, we all know recovery is a bumpy road.
Thanks to the Eberts (Jay/Steph/and a beautifully bald Jordan) for being in our path again when we needed them. And to the Fraliks for a 'Pam' long distance hug. We will continue to keep all updated here. Thanks for continued prayers for Tommy.
Tommy spent all day in mama's arms. He is off the ventilator, chest drainage tube is gone, heart pacing wires adios, central line gone (geez that was a long needle), most of the monitors for vitals are gone too. Tommy is pretty miserable and still on pain relief. His eyes are closed most of the time. I did give him a bath and he seemed to stop crying for that.
The Hirschprung's disease (and pain relief) is causing his intestines to slow down significantly. An abdominal xray has been ordered to see exactly what is filling his belly.
Tommy is still in ICU. Maybe today or tomorrow we will be transferred to the floor. Tommy needs prayers for comfort!
Tommy is doing well and already being weaned off of his morphine. He might be off the ventilator today. His eyes are still closed and he has earplugs in so he doesn't hear mommy/daddy's voices (he becomes a wild man). Thanks to all for the prayers and well wishes! I made the picture small so you could choose to look (or not).
The heart surgeon said it was a total success! Oh, that feels so good let me say it one more time "a total success". Dr Cohen didn't need to use any synthetic patches for Tommy's heart... he used tissue from Tommy's own body. Tommy is resting now (very sedated) and on a ventilator. He heard mommy/daddy's voices and needed more sedation! His color is pink, his skin is warm and he is nice and cozy. Mommy is going to stay with Tommy tonight and daddy is going back to stay with Liam at the Ronald McDonald House. More to come tomorrow. Thank you all for your prayers.
At 2:30 today Tommy entered surgery for his AV canal repair. We will send more updates in the coming hours as we know more. Colin and I think Tommy was excited to get this repair done because he had a BIG smile for the anesthesiologist who carried him to the OR.
And the little person that bumped us yesterday is doing very well today! The power of prayer is amazing.
With a scrubbed body and waiting in his tiny gown.... and waiting....and waiting... and waiting, we were unfortunately bumped from surgery today at 3pm. Tommy's only comment was "feed me now!". The other baby in the operating room is much sicker than Tommy and requires many more hours of surgery today. So, we are scheduled for tomorrow at noon again. The surgeon did say if the current operation goes late into the night, he would be too tired to operate on Tommy tomorrow. We will keep everyone posted here tomorrow as we learn more.
We can feel all the prayers! Thanks to the Eberts for their close thoughts. Thanks to my sister Tami for the "Tommy's heart" necklaces (everyone is wearing them). Thanks to Nora and Dave for taking care of our farm and doggies. Big thanks to grandparents for helping us today. And if Hannah and Nate are reading this .... I MISS YOU both already.
Yesterday Liam cut through his TWO bottom center teeth. One day shy of his six month birthday those two pearly whites are visible. With rosey cheeks and that lovely teething whine, I feel sorry for our neighbors at the Ronald McDonald house (we check in tomorrow morning).
Yesterday was Tommy's preop at Children's. We checked in at 12:30 and walked back to the parking lot when all was done at 5:30. Whew! It's hard keeping up with Tommy. We met the anesthesiologist (wonderful ways for Tommy to easily fall asleep for surgery), nurse practicioner (who will teach us how to care for his chest & lift), social worker, and then there were ekg's, chest xrays, and blood draws.
God continues to put amazing people in our lives. Yesterday was no exception. We met a little boy that is just as cool as Tommy. We will call him B (mommy forgot to ask his mom if was ok to mention his real name). B had heart surgery one year ago and his rosey cheeks and sweet smile were testimony of the benefits.
Today was overwhelming. In a really good way. First of all my mom and sister Tami spent hours weeding our flower beds (and they were a mess). They traveled from Monroe early in the morning to make sure they had enough time.... wow, the flowers are so pretty. We all enjoyed looking at them.
Grandma Sue made Tommy a blanket that he can take to ICU (he can have a blanket and his stuffed doggy). Grandma's friend Cee gave the angel to look over Tommy (Cee keeps an angel in her own pocket to think of Tommy). The blanket is really soft and he loves it. Grandma Dorothy drove up from Tacoma today so that mommy could work most of the day. That was a huge act of kindness. The boys were happy to see her.
The last act of kindness for the day was from the Fralicks and Eberts. Their act of kindness is so touching and generous. Thank you! We lead a blessed life because of friends and family and their kindness.
With open heart surgery coming up on the 13th we don't get many visitors because we don't want Tommy to catch a bug. But, Tommy and Liam enjoyed a visit from Grandma Dorothy, Uncle Bruce and Cousin Joe. If mom had her act together she would have taken more pictures :) We love snugglin' with our grandmas!
We met with Dr Cohen the heart surgeon that will fix Tommy's heart (still scheduled for 6/13). It was a long day for all of us (Hannah and Nate spent the day at Children's Hospital too), but mommy had an especially hard time listening to the surgeon and his plans. She knows this is 'the fix' but it's still hard.