Wow...2 months have passed since I last posted! Just evidence of how hectic things are at our house!
We will start with Max. He continues to amaze us! He's a creative, active and the most loving little boy! It's not all peaches and cream...he is 2 1/2 and he reminds of it periodically! Unfortunately, Max had a cold that turned into sinus infection. A trip to the After Hours Clinic, some amoxicillin and he rebounded in a couple days. Even Max says "no more snow Mommy"! For those of you who don't live in the Midwest, the month of February set records for the most snowfall. Let's just say, it's going to take awhile until we see the grass again!
As for Austin, he is a growing and happy little boy! He was 6 months on February 21st and weighed in at 6.49kg (about 14 lbs 5 oz) and 25.5 inches long. He continues to meet his growth goals typically of a baby with Downs Syndrome. Austin has providers from Capernaum Pediatric Therapy and Eastern Carver County Schools. Both have been truly impressed at his strength, motor skills and ability to keep meeting his goals. We have our nurses to credit for this as they work with him daily and push him in ways Brian and I could not. He is officially rolling from back to tummy and has even went from tummy to back a few times. Oh and his chatting and smiling could make anyones day!
Medically, he's had a couple small bumps in the road. No worries, he's fine, just his way of keeping everyone in check and making Mom and Dad's blood pressure go up periodically! First with his feeding, after several days of "waiting to see what happens tomorrow", we made the decision to decrease his rate from 17ml/hr to 16ml/hr. This was the first time we experienced a decrease. We knew the decision was the right one because his outputs were consistently in the 50-58ml/kg range and his growth had slowed slightly. So, on 2/7 we decreased his rate. His outputs started improving fairly quickly and after getting back to most days in the 40-50ml/kg range, we went back up to 17ml/hr this week! This plateau has been explained to us as typical for Short Bowel Syndrome kiddos. Our case manager gave me the analogy that it's like a train rolling into the station for a short stop. Austin was cruising along and then his body just needed a little break and time to adjust. He rested and (hopefully) he's ready to go again!
We also had a visit to the Children's Minneapolis ER on February 11th and thankfully it was just for a quick IV line repair. Austin has a Broviac for his permanent IV access. There is about 10 inches of line that is part of the portion that is connected to the surgically implanted port. That line is very soft and rubbery and has 2 layers. The outside layer separated from one of the connections and it was hanging on by a thread! A few hours later and we were back home. We couldn't use the line until midnight so we had to taper back to our normal start time over the course of the next couple days.
Austin also developed an intolerance to his ostomy bag. After many calls to Deanna Johnson (skin integrity nurse practitioner) and some problem solving, we came up with a plan that works. It took a few days, but once again, we were back into a routine. More frequently pouch changes have kept his skin looking pretty good, with the exception of some small spots of yeast.
Which brings us to the countdown! 11 days until surgery. Dr. Kreykes will reconnect (reanastomosis) his small intestines to his large intestines (aka ostomy takedown). He will also switch out his PEG feeding tube for a MIC-key. We are very optimistic this will go well and as planned. We also know it brings on new learning and challenges. Austin will no longer "poop" into the ostomy bag. He's still on exclusive breastmilk so frequent diaper changes will be necessary to keep his bottom nice and clean, dry and prevent breakdown.
Some of you have asked about how long he will be on IV's and tube feeding? Both of those are long term. Long term is used loosely. Best case scenario is 3 years and worst case is....well we don't talk about that! This surgery will allow Austin to continue to progress towards the tapering of his IV nutrition and increase of enteral and oral feeding. The more his body allows him to absorb food and water, the less IV support he will require. This takes time.
So once again, we are asking for thoughts, prayers and strength for all and Austin's faces, meets and clears this hurdle! I will update more frequently as we conquer the pre-op appointments and then surgery.
Love and Hugs,
Brian and Tara
Max and Austin
We will start with Max. He continues to amaze us! He's a creative, active and the most loving little boy! It's not all peaches and cream...he is 2 1/2 and he reminds of it periodically! Unfortunately, Max had a cold that turned into sinus infection. A trip to the After Hours Clinic, some amoxicillin and he rebounded in a couple days. Even Max says "no more snow Mommy"! For those of you who don't live in the Midwest, the month of February set records for the most snowfall. Let's just say, it's going to take awhile until we see the grass again!
As for Austin, he is a growing and happy little boy! He was 6 months on February 21st and weighed in at 6.49kg (about 14 lbs 5 oz) and 25.5 inches long. He continues to meet his growth goals typically of a baby with Downs Syndrome. Austin has providers from Capernaum Pediatric Therapy and Eastern Carver County Schools. Both have been truly impressed at his strength, motor skills and ability to keep meeting his goals. We have our nurses to credit for this as they work with him daily and push him in ways Brian and I could not. He is officially rolling from back to tummy and has even went from tummy to back a few times. Oh and his chatting and smiling could make anyones day!
Medically, he's had a couple small bumps in the road. No worries, he's fine, just his way of keeping everyone in check and making Mom and Dad's blood pressure go up periodically! First with his feeding, after several days of "waiting to see what happens tomorrow", we made the decision to decrease his rate from 17ml/hr to 16ml/hr. This was the first time we experienced a decrease. We knew the decision was the right one because his outputs were consistently in the 50-58ml/kg range and his growth had slowed slightly. So, on 2/7 we decreased his rate. His outputs started improving fairly quickly and after getting back to most days in the 40-50ml/kg range, we went back up to 17ml/hr this week! This plateau has been explained to us as typical for Short Bowel Syndrome kiddos. Our case manager gave me the analogy that it's like a train rolling into the station for a short stop. Austin was cruising along and then his body just needed a little break and time to adjust. He rested and (hopefully) he's ready to go again!
We also had a visit to the Children's Minneapolis ER on February 11th and thankfully it was just for a quick IV line repair. Austin has a Broviac for his permanent IV access. There is about 10 inches of line that is part of the portion that is connected to the surgically implanted port. That line is very soft and rubbery and has 2 layers. The outside layer separated from one of the connections and it was hanging on by a thread! A few hours later and we were back home. We couldn't use the line until midnight so we had to taper back to our normal start time over the course of the next couple days.
Austin also developed an intolerance to his ostomy bag. After many calls to Deanna Johnson (skin integrity nurse practitioner) and some problem solving, we came up with a plan that works. It took a few days, but once again, we were back into a routine. More frequently pouch changes have kept his skin looking pretty good, with the exception of some small spots of yeast.
Which brings us to the countdown! 11 days until surgery. Dr. Kreykes will reconnect (reanastomosis) his small intestines to his large intestines (aka ostomy takedown). He will also switch out his PEG feeding tube for a MIC-key. We are very optimistic this will go well and as planned. We also know it brings on new learning and challenges. Austin will no longer "poop" into the ostomy bag. He's still on exclusive breastmilk so frequent diaper changes will be necessary to keep his bottom nice and clean, dry and prevent breakdown.
Some of you have asked about how long he will be on IV's and tube feeding? Both of those are long term. Long term is used loosely. Best case scenario is 3 years and worst case is....well we don't talk about that! This surgery will allow Austin to continue to progress towards the tapering of his IV nutrition and increase of enteral and oral feeding. The more his body allows him to absorb food and water, the less IV support he will require. This takes time.
So once again, we are asking for thoughts, prayers and strength for all and Austin's faces, meets and clears this hurdle! I will update more frequently as we conquer the pre-op appointments and then surgery.
Love and Hugs,
Brian and Tara
Max and Austin
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