Sunday, December 7, 2008

Landon Takes a Bottle!!

Pic #1 is Mommy bottle feeding Landon for the 1st time!!
Pic #2 above and #3 below is Landon spending time with Daddy

Pics #4 & 5 below are Logan

Pic #6 below is Logan (left) and Landon (right) catching some zzzzz's together with Mommy

Well, the excitement resounding through my last post was short lived. Logan's doctor ordered him back in the isolette after only 1 day of freedom in his crib. He did extremely well for the 24 hours he spent in his new home, maintaining his body temperature as required and showing very little, if any, signs of stress from the noise, lights and chaos of the NICU to which he was now exposed. However, he lost some weight overnight so the doctor decided this factor alone was reason enough to return him to the confines of his isolette and his world of plastic walls; the only being within which he has existed since his birth 65 days ago. The reasoning behind this is that when Logan gets cold outside of the isolette, his body must burn precious calories to warm himself back up, whereas when he's in the isolette, the isolette monitors his body temp using a probe and if he gets too cold, it will adjust it's internal temperature to rise and warm him. His weight loss was nominal (9 measly grams) and not unusual for him (since they both lose weight some nights and gain large amounts other nights) but the doctor on call last week decided his plan of care should be to help him gain weight so he will be big & strong enough to undergo the VP shunt surgery as soon as possible and they will not do anything that carries even a remote possibility of inhibiting his growth. Alas, our sweet boy is back in his isolette for the time being and we're not sure if the doctors are going to let him back out into the crib before the surgery or if he will remain there until they move him to CHOP. Of course we are all hoping for the former.

On an exciting note, we hit another huge milestone yesterday when mommy got to give Landon his first bottle feed and he did so well!! He mastered the suck, swallow, breathe routine down pat on his very first try - he didn't choke at all and his vitals remained perfect the entire time. He only received 10 cc's of his feed through the bottle (and he took every last drop) and they administered the other 20 cc's through his OG tube as they usually would. The docs are slowly weaning him onto the bottle so for the time being, we will bottle feed him once a day and only 10 cc's at a time (with the balance fed through his OG tube) and they will gradually increase the volume as well as the frequency of the bottle feeds until he no longer needs the feeding tube at all!!

I also tried to give Logan his first bottle feed yesterday but unfortunately he didn't want any part of it - he kept spitting it out and choking on it and then he just wouldn't open his mouth at all for mommy. We were going to try again today but I was a little concerned because he just didn't seem to be himself and we didn't want to stress him out any further so we will give it another shot tomorrow evening. He was tachypneic (elevated respiratory rate) and was listless and lethargic as I held him when he is usually very active and alert. I think, or perhaps hope, he was just absolutely exhausted. He had a rough couple of days and needed spinal taps both yesterday and today. Yesterday's LP only yielded 2 cc's, which is an extremely small amount for him, and today his head measurement hadn't gone down at all and his blood pressure spiked so the doctors thought it could be a function of pressure building in his head. Therefore, they did another one today and were able to pull an encouraging 7.5 cc's. He was such a champ during the LP's, he barely had any bradys and just laid there sucking on his little pacifier. My little peanut is so wonderfully strong, he inspires me in ways I didn't even think possible.

They both received their first physical and occupational therapy evaluations yesterday and beginning next week, they will receive therapy 1-3 times a week. We haven't been able to speak to the therapist yet but according to the brief report we received from the nurses, Logan's muscle tone is stiff and rigid while Landon's is somewhat limp, although he seems to be tight in his shoulders and hip joints. I'm not sure yet exactly what their therapy will entail but I know it will probably be an important part of each day, week and month for the rest of our lives.

They are both still on the high flow nasal cannula with Logan on a 3L flow and Landon on a 2.5L flow. Logan's oxygen support is down to 23%-28% while Landon is typically always on 21% except during his feeds when he tends to de-sat and he needs to be turned up a bit. Logan continues to pull away from his little brother in terms of weight gain - he is now up to 3 lbs., 12 ozs while Landon is at a respectable 3 lbs., 7 ozs.!!!! Looking back on those first few days and weeks of their lives, I couldn't even begin to imagine a time when they would be well enough to come home to us and now they are both only a few ounces away from 4 pounds, close to being free of their isolettes and starting down the path towards full bottle feeds. They have fought through so much with all of the odds against them and have come so far. The scary thought is that I know we still have such a long and trying road ahead of us...but I know with all of my heart (and have seen it firsthand with my own eyes) that if anyone can overcome and persevere through adversity, it's our little boys.

1 comment:

kwanga25 said...

I'm so happy to hear all of this... you and Steve have fighters. Love you all and am praying for you all each and every minute of every day...