Grant's Journey

Happy Birthday Hercules!! Grant gave us the best birthday present of all this week ... do you notice anything??! If you guessed the absence of a feeding tube, you would be CORRECT! Can you believe it? We were with Grant at the cabin last weekend and when we got home on Saturday night, Kyle and I were busily putting away our gear. We heard a scream and both went running only to find Grant with his tube pulled out. I had been working with him the entire previous week on oral feedings all day long and then making up the difference in his night drip. He had been doing so well with it that we made the decision to leave his tube out for the night and Sunday and then call our doctor Monday morning. He was about six ounces short of his fluids goal Sunday night. Monday he was continuing to do well and our Pediatrician agreed to let us continue to chart his fluid intake, calculate his calories, and come in for weekly weight checks to make sure we were on track. To say that I was elated is a h...

While going through my pictures this morning, I was in shock at how much Grant has changed month to month. That is the miracle of the first year...small changes that amount to big developments, so gradual that I barely even realized they were happening. You can click on each picture to make it larger. I apologize...the text got moved over his face in some pictures when I shrunk it down...just ignore it :) I will try and fix them later, but for now naptime is over! Birth: very traumatic day for Grant... a few hours after this picture was taken, Grant coded for the first of what would be many many times. He proved to us on this day that he would give us a run for our money! One month: had already survived his first open heart surgery and had made it through a few GI surgeries. He would show us that his tummy was not done having problems and would go onto another emergency tummy surgery days later. This time, our nurses thought that for sure he could not live through it as bad as he was. ...

As Grant's birthday is just a few weeks away, we have been reflecting on a few other special people who played a big part in our journey. This first is sweet angel Gracie . We made these delicious treats last night for Family Home Evening in honor of little Gracie. Today is Gracie's angel day. Last year, our hearts were broken for her family as they learned that Gracie's little heart just could not take anymore and they would have to face the day that no parent wants to face. Gracie and Grant share a birthday and reading her story and visiting her while I was pregnant really helped me to anticipate the ride we would be on. I am also thinking a lot about another sweet angel who earned her wings far too early. Angel Avery is on my mind a lot these days (her birthday and angel day is on March 10th). Avery's mom, Leah, and I became very close as we both went through the final stage of our pregnancies together. In the end, Avery's body was far too sick and she died on...

Peek.... a- BOO! I was reminded by my grandmother (Grant's great grandmother) that I was a few days behind on getting some pictures of Grant at 11 months up for her to see....Grandma Great...these are for you! Grant playing on the kitchen table with his very own giant toothbrush! Never to early to start focusing on good oral hygiene! We are counting down to Grant's first birthday now only a few more weeks away. I am filled with emotion as I reflect on the last year. This will indeed be a birthday to celebrate!! We went to the pediatrician this morning for another weight check and to make adjustments to Grant's bolus feeding plan. He is doing really well with his bolus feeds now (if only this mommy was as good at keeping on the schedule!). He is taking 4 oz an hour and we do five daytime tube feeds and then run him on a continuous drip all night. He still will not take any volume of formula by mouth (we tried all kinds of things to no avail) and our doctor really wants to be...

I don't often put videos on the blog because I don't think that people want to see all of the clips that make up our memories.... But this one was too good not to share. :) Grant has discovered how to pull down the bumpers on his crib and he laughs hysterically every time. This was tonight at bedtime. I love his giggle. On a side note... we still have Grant's crib set to the high newborn setting. He has not been able to do anything, so we haven't worried about it. This week, both Kyle and I have walked in to find him sitting up in his crib. Looks like one of his PT goals is paying off! We probably ought to put the crib down a notch now.... eh? (vernacular inspired by all of the Olympians chilling in Canada right now....oh, and my former roomie Michelle...my favorite Canadian!)

I am a CHD survivor. I remember last year posting THIS in honor of Congenital Heart Defect (CHD) awareness week (held every year the week of Valentines day). I found it fitting at the time that while others were focusing on school parties, dates with a special someone, and all of the commercialized hearts out there, we were anticipating the arrival of a person who would teach us in a profound way to consider the condition of our hearts. Many of our heart friends are sharing some shocking statistics about CHD's... like just how common heart problems are in newborns! Did you know 1 in every 125 babies will have some kind of heart problem, big and small? Did you know that nearly twice as many kids will die from CHD's this year as will die from childhood cancers, yet the funding for CHD's related research is minuscule in comparison to that of pediatric cancer research funding? We need to spread the word. Be aware of signs and symptoms. Be a registered organ donor. Too many chi...

We have had some huge developments around here in the feeding department. First off, NG feeds are finally going a little better! Phew! We have had only a few minor reflux/turning blue incidents and we finally have Grant back to his normal continuous drip rate, which he seems to be tolerating ok! We are in a pattern and as long as we turn off his food an hour or so before bed, he seems to do ok (and we sneak back in and turn his food on again after he has been asleep a while). While this change feels miraculous, it is tiny in comparison to the other wonderful change around here. Grant slept through the night!!!! You read that correctly. In 10 1/2 months, he only slept maybe six hours straight two or three times. Then, this last week, he has slept through the night at least four times!!!! Is it because his stomach is finally full and not bothering him? Is it because his new NG tube is incredibly soft and flexible making it more comfortable? Who knows, but this mama is DELIGHTED! I have ...