Therapy and Pulmonary Hypertension? - Kelly

We had our High Risk Pedi appt monday.  Kyle seems to be doing good.  She checked out his legs and (some doctors and therapist have been seeing some high tone in his legs.) and her thoughts were much like that of our primary pedi.  She said that she might feel some tightness in his legs but she really did not seem concerned about it.  she also got kyle to straighten his legs!  This is one area that our therapists have been wanting us to work on.  We are currently seeing an OT 1 time a week and then I do infant massage and our play therapy!  Kyle's therapy looks mostly like playing - we work on tummy time so kyle can learn to push up on his elbows and raise his head - this will strengthen his core and get him ready for sitting and crawling,   we rest in the fetal position so that kyle can get used to how this feels - b/c he was so early he does not naturally do this so he will get used to the weighted feeling on his knees and curl his core in instead of arching back - the arching is a CP thing and so we want to keep him from this movement as much as possible.  we also put toys on his chest to encourage him to look down instead of arch to see toys - we put a rolled towel under his bottom to encourage him to bring his feet up and play with them.  this helps sensory and mental development too - all that stuff they put in their mouth especially hands and feet is great for them in learning (at least when they are this little!)  we also work on holding onto  toys, lots of stretching after after massage time - and there are several more - we get to use a big exercise ball and a bumbo for core strengthening. and of course we do lots of songs with movements that stretch and cross the midline.  these are kyle's favorites - he like anything that is communication oriented rather than the physical exercises!  the tummy time is really hard work for him!

Some days I worry about what I am seeing from kyle and other days I am so optimistic and think that we don't need this much therapy each day.  But - either way - it can't hurt him and I know early intervention is the best thing.

Kyle has not been weaning off his oxygen the way we thought he would.  He is now 13 pounds - almost 3 times what he weighed when he was discharged.  So last high risk pedi appt I told the doctor that I thought he could be weaned and I wanted to get a pulse oxygen monitor so that I could start monitoring that at home and wean him.  She did not want to give me one - she said they are hard to read and that she did not want me relying on one.  I told her I had stared at one for 4 months and learned how to balance what the number said with how kyle looked, the circumstances, and make an educated decision about what was going on.  well she still did not want to give me one but I kept pushing and I got one.  so I did some investigating and what was happening is kyle does great off his oxygen for about a bit and then he starts to have de-saturation episodes - the longer he stays off the lower the de-sats go and the closer they get together.  so when i told he these symptoms for kyle she said it sounds like pulmonary hypertension which is where the pressure inside the lungs is greater than the pressure in the rest of the body. It also has something to do with the 2 sides of the heart - a low pressure side and a high pressure side.  (lots of info to take in in one sitting)  I know there is much more to this and I'm sure we will find out more as we have our upcoming appointments.  

it seems like sometimes when I just start thinking - wow - we are done with all these doctors - we are about to be normal - something comes up - I learn so much from other moms and kids that I read about online and so I feel somewhat prepared for things that will come up but others around me that are not in this situation want to be positive and so they are always saying things like "that won't be him", "he's going to be fine", "he is just perfect", i think they just assume like I do when I am only looking at kyle that all seems perfect.  but then I come out of that shelter sometimes to see others and realize that when you are shoved out of a perfect environment of a womb and into saran wrap and an incubator at barely 1/2 way through your creation time there might be problems.  It is also hard to balance this with trusting that God will grant my petition and restore his brain to perfection!

on one hand accepting God's will - the great things he has planned for kyle's life sounds like a good decision - displayed for us in his word.  and on the other hand - asking until I get what I want and being persistent and asking God to change his mind if that is what it takes - also seems like a good idea - and displayed for us in scripture.  or maybe just mabye these two are one in the same.

and I wonder why my head hurts at night!  anyway - I have gotten off topic....

we will be doing an echo of kyle's heart with out him being on oxygen.  this will let them see if he is having pulmonary hypertension.  then we will do a sleep study to see if kyle is infact having miniature apnea episodes that his monitor is not picking up.  then we will se a pulmonologist and he will talk to us about what is up and where to go from there.

so that is where we are!  Kyle is doing great!  He is happy - had great awake times - coos and is starting to babble.  he makes the "g" and "r" sounds and gurgles... all of these are milestones that he is meeting ON TIME for his corrected age!

Our next big milestone is to be up on his elbows.  He is 11 weeks yesterday.  this is an 11 week milestone.  i can not remember for the life of me when my other kids did this!  anyway I am not paniced!  i know that in addition to this great info of milestones - kids are individuals and i know that they many times developed mentally or physically faster - so if he does not pop up on his elbows this week we will just know that he is brilliant and gifted!

I have a friend who on her blog always praises her son for what a hard worker he is.  and I always wondered how she knew that or what really she meant - b/c they are so young.  but I know now.  Kyle is a hard worker too - he so sweet about trying to work during therapy and does even seem to have a good attitude about it!  He puts up with infant massage several times a day and with me stretching and even loves the singing - which I can guaranty is not so good!  so all that to say i am proud of him.  and he is a hard worker.  I am also learning how to be thankful to God for how he is healing kyle.  I've had a hard time with being thankful for God healing something that I asked him to save us from in the first place.  I am also so thankful for the other moms that put themselves and their kids out there to be an encouragement to moms like me.