July 27
They have given us our home date! This Wednesday! Woo hoo! It did not come without a little bit of drama, of course!
We were moved to the discharge unit about 10 days ago to work on feeding, growing, and weening off his respiratory support. Last Monday they took him off all oxygen and he did pretty good for about 3 days and then Thursday night he really started to struggle. Basically, they see this happen with kiddos who have had such bad lung issues. He does not have a lot of reserve so if he gets really tired then his breathing is the first thing to go.
It was very disappointing. It felt like a huge setback but as we do we looked at the brighter side of things. The doctor on Friday said that he will go home on oxygen and need it for a few months which is a good thing to prepare for and feels better because we will not push him to be 100% better by the time he comes home. He can heal slowly in the comfort of our home.
He is also not completely eating on his own yet. In the last 24hours he has started to take full feeds by bottle and 50% of his feed from breast but this could take another week or two to get fully going so they will send us home on an ng tube until he has mastered feeding and growing! Hopefully in next two weeks.
He is up to 4lbs and 11oz!!! He is 3.5x bigger than his birth weight. Hard to believe.
Saturday, July 27, 2013
Wednesday, July 10, 2013
July 10, 2013 - Growing, growing, growing strong
July 10, 2013
Well, the last few weeks have been great! I have been growing, growing, growing and the end is in sight!
Growth: I weigh 3lbs 8oz!!! I have almost tripled in size from when I came. As my Mom says - I am huge! I still need to gain another 1/2 pound to be taken out of the isolette but I really have some fat on me now. The weight gain is my biggest challenge because of the IUGR issue which means I was 1/2 the size of a normal baby at 27 weeks and the docs say it will actually take about 2 years for me to really catch up. Every night the night nurse texts Mom and Dad my weight in the middle of the night so they can keep up with it on a real time basis. It is always the biggest news of the day. I have to be able to continuously gain weight to be able to go home, so no more days of dropping a few grams, just an upward trend. It has gotten a lot better over the last couple of weeks.
Respiratory: I am on the last type of support for my lungs called a low-flow cannula. I went off the CPAP last week and did beautifully. Great heart rate, great oxygen saturation. I stayed on the high flow cannula for 6 days and then they moved me onto to this type of support. I have struggled a little for the last 24 hours on this support with some minor drops in my stats but overall good.
Feeding: I started taking Mom's milk via a bottle the last 2 days and have been doing great. I am eating from a bottle 2Xday and the speech therapist comes in to watch how my "suck, swallow, breathe" reflex is going. My problem is that I get so excited that I drink really fast and forget to breathe. I reflux and my heart rate drops but I usually can self recover. This skill is challenging but I am getting there.
Developmental: I am officially acting like a newborn. I cry when I am hungry, have a dirty diaper, or am over tired but every little thing does not send me spinning anymore. I can handle diaper changes although I still hate to get my temperature checked. I LOVE being held and could snuggle with Mom and Dad all day - I can't wait to get home.
So the question of the day is, when will I get home????
Well, it is hard to put a date on it although for sure by August. I have to be able to regulate my own temperature (so need to be at least 4lbs), I need to be able to take all my feeds via bottle and be able to gain weight regularly. I need to not have episodes where I forget to breathe (oops) and ideally I am off all respiratory support. That is a lot for me to put together but I am pretty awesome so I would like to be able to do it the next 3 weeks - everyone pray for home by August 1st!!!
Well, the last few weeks have been great! I have been growing, growing, growing and the end is in sight!
Growth: I weigh 3lbs 8oz!!! I have almost tripled in size from when I came. As my Mom says - I am huge! I still need to gain another 1/2 pound to be taken out of the isolette but I really have some fat on me now. The weight gain is my biggest challenge because of the IUGR issue which means I was 1/2 the size of a normal baby at 27 weeks and the docs say it will actually take about 2 years for me to really catch up. Every night the night nurse texts Mom and Dad my weight in the middle of the night so they can keep up with it on a real time basis. It is always the biggest news of the day. I have to be able to continuously gain weight to be able to go home, so no more days of dropping a few grams, just an upward trend. It has gotten a lot better over the last couple of weeks.
Respiratory: I am on the last type of support for my lungs called a low-flow cannula. I went off the CPAP last week and did beautifully. Great heart rate, great oxygen saturation. I stayed on the high flow cannula for 6 days and then they moved me onto to this type of support. I have struggled a little for the last 24 hours on this support with some minor drops in my stats but overall good.
Feeding: I started taking Mom's milk via a bottle the last 2 days and have been doing great. I am eating from a bottle 2Xday and the speech therapist comes in to watch how my "suck, swallow, breathe" reflex is going. My problem is that I get so excited that I drink really fast and forget to breathe. I reflux and my heart rate drops but I usually can self recover. This skill is challenging but I am getting there.
Developmental: I am officially acting like a newborn. I cry when I am hungry, have a dirty diaper, or am over tired but every little thing does not send me spinning anymore. I can handle diaper changes although I still hate to get my temperature checked. I LOVE being held and could snuggle with Mom and Dad all day - I can't wait to get home.
So the question of the day is, when will I get home????
Well, it is hard to put a date on it although for sure by August. I have to be able to regulate my own temperature (so need to be at least 4lbs), I need to be able to take all my feeds via bottle and be able to gain weight regularly. I need to not have episodes where I forget to breathe (oops) and ideally I am off all respiratory support. That is a lot for me to put together but I am pretty awesome so I would like to be able to do it the next 3 weeks - everyone pray for home by August 1st!!!
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