Journal entry by Kari Hall —
The last two months have brought a lot of reflection for Josh and I as we think back to some of the most difficult conversations we had while continuing our journey of so many unknowns.
To celebrate Waylons first birthday we served a meal at the Ronald Mcdonald house last night. A tradition our family hopes to do every year to honor Waylon and give back to all the families.
Waylon is doing good! He had hopefully his last hearing test in October as there hasn't been any change to his hearing and he has passed three tests now.
We continue to meet with Nutrition about every month. Waylons oral aversion is much more severe than we thought. He has weeks where he won't take more than a half ounce and some days he's taking 4 oz! However, when it comes to table foods he will not eat from a spoon or allow food near his mouth if offered to him. With support from OT I am learning a lot on how to introduce foods. We are doing food play therapy to allow him to introduce himself to foods, play with them, touch them and then put his fingers or toys in his mouth that has the foods on them so it is on his terms. This is where we have to again be intentional about ensuring it is a positive experience for him.
We have seen some improvement though! He will put a spoon in his mouth if he is holding it and is learning to adjust to the textures of food. He recently has started to put some table foods in or to his mouth which is huge.
From our visits with Nutrition he is actually catching up on growth. Still under the 1st percentile but is showing that he is growing and not coasting. Waylon has been a very good sleeper the last couple of months and at times is not waking to eat and missing a feed. This part had me concerned on his growth as every calorie counts. We still feed him from syringes and do not use a pump; I have been hesitant to get a pump. However, it is important he gets his minimum fluid goal in daily so we will begin using a pump for his night feed. This allows him to continue to rest and not need to wake him to eat. We also can control the rate at which he is being fed and run it for a longer period of time and increase the volume to add more calories too.
I also learned we can put puree foods through his tube. We need to continue to encourage foods orally to ensure no allergy then we are able to put the remainder through the tube. Another way to input more calories.
We continue to use a high calorie formula while supplementing breast milk; 70%, formula 30% breastmilk. We recently changed formulas to a premixed which is fabulous! The powder formula involved a lot of math to calculate how many kcals per ounce with addition of the volume of the scoop...and so much more but now I just open and pour!
During our Mayo day in December I brought some Christmas cards to take to the MFM (Maternal Fetal Medicine) team, Methodist NICU and St. Mary's NICU. We stopped at MFM first and I thought I would ask if Dr. Szymanski was in clinic. She was but was with a patient. We were able to visit with Dr. Rose, another phenomenal physician we met with while pregnant. Ironically, while we were talking Dr. Szymanski finished with her patient and was able to meet and hold Waylon! This immediately brought me to tears, a complete full circle moment.
Waylon has done well through the winter season. He has had one ear infection and did very well with this. A couple of rough days until we started antibiotics and he was himself again. To be completely honest I had been anxious how he would handle even a stuffy nose and has done well.
Waylon also meets with PT and OT weekly to work on gaining strength in his back to be able to sit unassisted as well as learning to crawl. He is doing really well with this. He recently has started rolling onto his belly more often. This was something he wouldn't tolerate very long but has learned to tolerate this and stay on his belly while lifting himself up. He REALLY wants to crawl, he is always bringing his knees up and trying but doesn't have the neck/back strength to support his head yet. I typically don't set expectations for Waylon to protect myself from being disappointed but had shared with Josh it'd be cool if he was sitting unassisted by his first birthday. Two weeks leading up to his birthday he did just that and is loving it!
He started the new year finally getting his first tooth. He has been chewing on teething toys for so long I thought months ago a tooth was coming but finally just broke through.
His first word was Dada, we're three for three with that...Josh thrives on this!
Waylon is almost 16 lbs, he continues to gain on his own curve and we follow his path.
The last year has been simply unimaginable. We entered a path of so many unknowns but are so happy to be home together and working hard to help Waylon grow, improve his mobility and oral intake.
Thank you for continuing to follow Waylons Journey💙
We appreciate our Waylons Warriors!
To celebrate Waylons first birthday we served a meal at the Ronald Mcdonald house last night. A tradition our family hopes to do every year to honor Waylon and give back to all the families.
Waylon is doing good! He had hopefully his last hearing test in October as there hasn't been any change to his hearing and he has passed three tests now.
We continue to meet with Nutrition about every month. Waylons oral aversion is much more severe than we thought. He has weeks where he won't take more than a half ounce and some days he's taking 4 oz! However, when it comes to table foods he will not eat from a spoon or allow food near his mouth if offered to him. With support from OT I am learning a lot on how to introduce foods. We are doing food play therapy to allow him to introduce himself to foods, play with them, touch them and then put his fingers or toys in his mouth that has the foods on them so it is on his terms. This is where we have to again be intentional about ensuring it is a positive experience for him.
We have seen some improvement though! He will put a spoon in his mouth if he is holding it and is learning to adjust to the textures of food. He recently has started to put some table foods in or to his mouth which is huge.
From our visits with Nutrition he is actually catching up on growth. Still under the 1st percentile but is showing that he is growing and not coasting. Waylon has been a very good sleeper the last couple of months and at times is not waking to eat and missing a feed. This part had me concerned on his growth as every calorie counts. We still feed him from syringes and do not use a pump; I have been hesitant to get a pump. However, it is important he gets his minimum fluid goal in daily so we will begin using a pump for his night feed. This allows him to continue to rest and not need to wake him to eat. We also can control the rate at which he is being fed and run it for a longer period of time and increase the volume to add more calories too.
I also learned we can put puree foods through his tube. We need to continue to encourage foods orally to ensure no allergy then we are able to put the remainder through the tube. Another way to input more calories.
We continue to use a high calorie formula while supplementing breast milk; 70%, formula 30% breastmilk. We recently changed formulas to a premixed which is fabulous! The powder formula involved a lot of math to calculate how many kcals per ounce with addition of the volume of the scoop...and so much more but now I just open and pour!
During our Mayo day in December I brought some Christmas cards to take to the MFM (Maternal Fetal Medicine) team, Methodist NICU and St. Mary's NICU. We stopped at MFM first and I thought I would ask if Dr. Szymanski was in clinic. She was but was with a patient. We were able to visit with Dr. Rose, another phenomenal physician we met with while pregnant. Ironically, while we were talking Dr. Szymanski finished with her patient and was able to meet and hold Waylon! This immediately brought me to tears, a complete full circle moment.
Waylon has done well through the winter season. He has had one ear infection and did very well with this. A couple of rough days until we started antibiotics and he was himself again. To be completely honest I had been anxious how he would handle even a stuffy nose and has done well.
Waylon also meets with PT and OT weekly to work on gaining strength in his back to be able to sit unassisted as well as learning to crawl. He is doing really well with this. He recently has started rolling onto his belly more often. This was something he wouldn't tolerate very long but has learned to tolerate this and stay on his belly while lifting himself up. He REALLY wants to crawl, he is always bringing his knees up and trying but doesn't have the neck/back strength to support his head yet. I typically don't set expectations for Waylon to protect myself from being disappointed but had shared with Josh it'd be cool if he was sitting unassisted by his first birthday. Two weeks leading up to his birthday he did just that and is loving it!
He started the new year finally getting his first tooth. He has been chewing on teething toys for so long I thought months ago a tooth was coming but finally just broke through.
His first word was Dada, we're three for three with that...Josh thrives on this!
Waylon is almost 16 lbs, he continues to gain on his own curve and we follow his path.
The last year has been simply unimaginable. We entered a path of so many unknowns but are so happy to be home together and working hard to help Waylon grow, improve his mobility and oral intake.
Thank you for continuing to follow Waylons Journey💙
We appreciate our Waylons Warriors!
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