Thursday, March 19, 2009

Dodged a bullet

Well, as is quite evident, it has become increasingly difficult to find time to update the blog now that the boys are getting older and are spending much more time awake so I apologize to those that follow it and have been awaiting the latest news!

We've had some big developments in the past few days as our little sweetpea Logan gave us quite a scare. It began on Tuesday morning when I noticed that the night before Logan just didn't sleep as well as he normally does - he was tossing and turning and grunting a lot. I didn't think too much of it, just chalked it up to his cannula bothering him because it had been coming out of his nose alot, but I made a mental note of it anyway. The remainder of the day, however, gave me pause as he continued to seem just not quite "himself." The most alarming symptom was that his fontanel appeared to have "filled in" quite and bit and was no longer soft but tense and bulging, which indicates that his brain is being put under pressure by the build up of fluid. Coincidentally enough, he had CAT scan and neurosurgery follow up appointments scheduled for the next day at CHOP. His CAT scan was intended to be just a baseline to monitor his shunt but instead it revealed to us the cause of Logan's symptoms - a subdural hematoma on the left side of his brain caused by overdrainage of the shunt. We were informed that he would be admitted to the hospital and would in all likelihood need surgery today to drain the blood and then based on how is brain looked, he might need a shunt revision to address the possible malfunction. It was a lot to swallow in one day and flashbacks to our prior days at CHOP and the Pennsy NICU quickly flooded my head. So after spending 14 hours at the hospital yesterday we awoke at 530 this morning to head back and watch our sweet boy endure a 2nd brain surgery of his short life. What an indescribable relief when an hour or two after our arrival, the doctor came into Logan's room and informed us that they had opted not to move forward with the surgery. Their reasoning was that his fontanelles had softened overnight and were not bulging, he wasn't symptomatic anymore and the hematoma was small enough that if it was no longer putting his brain under pressure then they would rather not risk the surgery. He will get a follow up CAT scan in one week and then a subsequent one a month later in order to monitor the hematoma and ensure it is not growing larger and/or putting pressure on the brain, thus possibly causing further brain damage (than what he already endured from the grade III/IV brain bleeds). Yes, there is a good possibility that we will face the repercussions from this problem again in the near future (since they don't typically resolve on their own in infants) but for my own sanity, I can only be thankful that today brought us good news and Logan is home with us, back to his normal self and will sleep in his own warm bed right next to me tonight. :)

That news aside, time is certainly passing us by quickly and they are growing like weeds. As of their last pediatrician appointment 3 weeks ago, Logan was 10 lbs., 10 ozs. and Landon was 9 lbs. 8 ozs. They weighed Logan in the hospital yesterday and he was up to 12 lbs., 5 ozs. already!! Hopefully Landon is only a pound or so behind him.
The biggest and best news I have to offer is that RSV season has almost come to end and it appears that we have made it through our first one without either of the boys getting sick, what a tremendous relief! RSV is short for Respiratory Syncytial Virus and is a viral disease of the lungs and the primary cause of respiratory illness in infants and young children (and the primary cause of rehospitalization within the 1st year of life for micro preemies like the boys). Virtually all children are exposed to RSV within the first 2 years of their lives and babies born before 36 weeks are at an elevated risk of contracting severe RSV. For otherwise healthy infants it amounts to not much more than a simple cold but it has much more dire consequences for premature babies with compromised respiratory systems, including death. For this reason, we have not been able to take the boys out of the house except for doctor's appointments and even then we have to either wait in the car until they can be admitted into an isolated room (rather than sitting in a waiting room full of sick kids) or we have to seclude ourselves to the corner of the waiting room away from everyone else. We have not permitted any guests at the house except for immediate family so none of our friends or extended family have been able to meet them and that has been extremely difficult for me. As an especially proud first time mother, of course I just want to bring them everywhere with me and show them off to everyone I know but alas, this just isn't a feasible option for us. RSV season is officially over in mid-April so I am certainly looking forward to being able to slowly introduce them to the rest of our family, friends and the outside world. It has been a long and taxing Winter for our family and I welcome the warm weather in hopes that it will help to lift all of our spirits, including the boys' as they don't get outside too much except when we bring them out to the porch and sit in the rockers with them.

Landon and Logan continue to have 1-2 doctor's appointments a week although the next month or so is looking much better now that the need for follow up appointments has become less frequent. Whereas immediately following discharge, they were seeing a few different doctors every 2 weeks or so they are now only requiring monthly or bi-monthly follow-ups. We received good news at Landon's last nephrology appointment in that his renal scan looked great and his blood pressure has normalized. Therefore, we have a follow up in a month and if his BP remains stable, the doctor is hoping to be able to discontinue the need for his daily medication amlodipine).

Logan remains on supplemental oxygen (1/8L flow) but is making good strides toward being weaned off it. An 1/8L flow is about as minimal a flow as they doctors will prescribe (his regulator is set to go down to 1/32 but the docs say when the settings get this low the difference is inconsequential. His sats usually sit anywhere from 97-100 while on the oxygen but the few times we've taken his cannula out of his nose his sats typically drop and tend to yo-yo between the low 90's and high 80's. He is growing at a considerable rate though, as are his lungs, and eventually the growth of new healthy tissue will eradicate the lung disease he incurred as a result of his prematurity and being on the vent for the first 8 weeks of his life. Therefore, we are hoping and expecting that he should only need the oxygen for another month or so.

Now that the boys' chronological age is 23+ weeks (almost 6 mos.) we have started them both on rice cereal (only once a day for now), what an adventure that has been!! It is quite a task trying to feed rice cereal to babies who really only behave like 8 week olds (that is their adjusted age). Needless to say it usually requires both Steve and I as they cannot sit up on their own (or even sit supported in a bumbo since their head control is still lacking) and they both seem quite confused to receive a spoon instead of the nipple to which they have become accustomed! They really struggle to understand the concept and it is incredibly difficult with Logan as he is a fierce eater and just doesn't have the patience to sit and wait for the spoon and when it arrives he only finds minimal sustinence for his liking, whereas with his bottle he can gulp down as much as he wants as quickly as he wants (before mommy or daddy have to pull out the bottle in order to pace him). We will keep them on the rice cereal for another few weeks and then slowly introduce them to regular baby food, beginning with veggies. I must admit, I'm extremely excited for that as I'm quite certain they will probably never acquire a liking to the taste of the rice cereal (it's quite bland)!!

They are both receiving physical therapy once a week through the State of NJ Early Intervention Svcs. and although they've only had a few sessions, I feel that it has already been of great benefit to them. The therapist has thus far been focusing primarily on improving their head control and encouraging them to reach out and hold toys when placed in front of them. Logan, being the bigger and stronger of the two, has much better head control and can lift his head somewhat during tummy time as well but Landon makes attempts to reach and hold toys whereas Logan does not yet (he tends to keep his fists clenched tightly closed). Each of them possess their own strengths and weaknesses and I find that so endearing.

I have so much more to say but am absolutely spent from the events of the last 48 hours so unfortunately I'll have to wait until my next post (which hopefully won't be in a month's time like this one was)!