October

Golly, October sure has been a very busy month for Tripp. 

The latest is that Tripps hearing aids should be in next week! It will be so exciting to see how he responds once he can actually hear!

ST and PT are being increased both being increased to once a week for Speech and every other week for Physical Therapy.  Speech is being increased because now we also need to work on language/hearing skills along with eating skills.  And physical therapy is being increased because while he is not really behind we dont want him getting behind.  Tripp still has alot of work to do with head control as he is still not lifting his head up for extended periods of time. 

We also went to Wake Forest 2 weeks ago and met with a pulmonologist there who is scheduling a sleep study.  They said to call tomorrow if we havent heard of an appointment for it yet, which we havent so Ill be calling tomorrow about that. This same week we also met with his plastic surgeon, he is wanting to push back his cleft surgery for sure until a year old, because this will only give him less room in the back of his mouth.  He is going to see how the sleep study goes and see if he grows any more in the next few months.  If he doesnt and is still having sleep apnea problems then we will see about a second jaw distraction.  He said that he hasnt ever had to do a second one, so hopefully his jaw will grow enough to avoid this and to stop the sleep apnea problem (bc sleep apnea does have some serious long term effects). 

On a good note Tripp is not aspirating any more and is doing awesome with bottle feeds.  He is consistantly eating about 1/2 of his bottle and a few times has finished all of it.  Which is awesome, our speech therapist is very impressed--she says he is blowing all of the pierre robin babies that she has seen out of the water! (Even though he still is having some sleep apnea issues, this is the wonders of the jaw distraction when compared to a trach which is what every other pierre robin baby has in this area) He is also eating about 1/3 of a container of stage 2 baby foods. 

Eye Doctor

So thankful today! Tripp had to go to the eye doctor today and everything looked great and he doesn't have to go back for a year!!
His retina's both look really good and they are in perfect condition (which detachment is a bog concern with sticklers syndrome and something we will have to watch his entire life).  Nearsightedness is also a problem with sticklers syndrome, but, he obviously has no way to tell us right now what he can and can not see at this point.  So next year we will evaluate for this and also check the retinas again.

Praise the lord for a good day!

September

Geez, I cant believe september has went by so fast.  So to begin with our baby boy turned 4 months old this month, and he weighed 15lbs 7 oz (62nd%) and 26 in long (85th %).  We just have a long and skinny boy and that is just fine with us! As long as he continues to gain weight and height it is also just fine with his doctor :)

So, this month we have had alot of ups and downs.  First of all, our pulmonologist did a oxygen saturation study overnight just to see how he was doing.  Most of the time (around 97%) he was great and 98% or higher.  But that 3% he was still dropping his oxygen sats. They would come in clusters every 45 min to an hour and would be accompanied with a change in his heart rate.  This only gives him more evidence to the obsturctive sleep apnea. We will be foloowing up with a pulmonologist at WF to get into a sleep study in 2 weeks since they can not do them on babies at Roanoke. 

Our GI doctor put into action another swallow study alot sooner than they recommended at WF, thank goodness!! He felt that if he waits to long to start eating solids from a spoon that he would fall behind. Which our pedi and speech therapist was also thinking as well.  So we go for that this thursday, hopefully it will go well and we can start some solids right away. 

We have also decided to increase his physical therapy.  Even though he is lifting his head up, he only does it for a few mintues at a time and them just lays down if hes on his tummy or slumps over if hes sitting up.  We want to tackle this asap, so it doesnt become a bigger problem than it is now. 

The best part about September was we all went on our first vacation as a family of 4 to Topsail Island.  We all enjoyed just getting to relax and not worrying about all the doctors appointments, and Ricky enjoyed actually spending alot of time with us instend of working. One day while we were there it rained all day, so we decided to take Bella to see her first movie--The Lion King-- while Aunt Hannah and Uncle Garrett stayed back at the house with Tripp.  We all had a great time.  btw the water was much too cold for baby Tripp to get in, but he had fun hanging out still :)

Hanging out by the pool 

My first swimming trunks :)

The upcoming 2 weeks we have an eye exam, speech therapy, swallow study, plastic check up, pulmonology at wf, physical therapy, and a pulmonology appt in roanoke. I will update some more after these next 2 weeks because there will be alot of important appointments coming up.  :)

Update

I cant believe it has been almost a month since I have updated this, alot has been going on thats for sure. Tripp is now getting speech and physical therapy, speech to work on eating skills and physical because he is still really stiff in his joints (stiffer than even a newborn should be). 

On Sat, August 8th Ricky and I went in to check up on Tripp and we noticed that he wasnt breathing, he would stop for around 30 seconds and then start breathing again and would repeat this pattern.  Since we didnt want to go wait in the ER all night we just decided to stay up with him and get him checked out the next day.  Sunday we went into our pediatricians office and we decided to try to get an apnea monitor so that we could get some sleep and still know if anything was going on.  Well we couldnt get a monitor from any equipment companies on a Sunday so she went ahead and amitted him into the hospital for observation.  The next day we ended up being transferred to WF, Tripp ended up getting there a little after 10 and I got there a little after midnight.  We ended up staying 2 nights in the hospital and came home on Wed with an apnea monitor.  He also got his distractors taken out while we were here, his plastic surgeon has said that his jaw is in a good place and that there isnt anything else that he can do for him at this time.  Sometimes he has nights where his monitor does not go off at all and then there are nights where it goes off up to 16 times (that has been the highest amount this far). But on the positive side Tripp was weighed in the hospital and he weighed 13 lbs. 14 oz.! We are so happy that he is finally starting to gain some weight. 

The next day after we got home from the hospital, August 11th, Tripp finally lifted his head up during tummy time. 


Then on August 19th, I went to the dentist that morning and Tripp rolled over from his back to his belly for his grandmomma and auntie hannah, and then he finally did it again this morning for me daddy and Bella :)

Yesterday on August 23rd, we had another swallow study at Wake Forest and it showed that Tripp is still aspirating but it isnt as bad as it was.  And now we can finally start working some with a bottle, 15 ml of formula with 1/2 tablespoon of rice cereal 2x per day.  Its a baby step but well take it :)

Today August 24th he had an audiologist appointment for his hearing test.  During this he had to stay asleep the entire time, and he would only sleep long enough to get the left ear done.  However, this has showed that there is moderate hearing loss in this ear and he will need a hearing aid in this ear for sure.  We will be having another appointment soon to do the right ear.  At this facility insurance will not pay for hearing aids, but they can transfer us to another facility here in Roanoke where the insurance will cover the hearing aids (thank goodness!)

We have lots of upcoming appointments as well- gtube surgeon, speech and physical therapy, well check up, gi doctor, pulmonology, and eye doctor. Please pray that Tripp just continues to progress and to give us and the doctors the tools/knowledge to help him the best that we can. 

Sticklers Syndrome

Today we finally heard back from genetics at Wake Forest with Tripps final test results that were sent off.  They came back positive for Sticklers Syndrome type 1. This is the most common type of sticklers that is associated with Pierre Robin, it may have it because of a mutation in his genes or inherited it from either Ricky of myself (this will only be known if we are both tested for the syndrome as well, which we may look into at a later time). Fortunately he shouldn't have any cognitive problems because of this, as it effects his hearing, eye sight, and joints.  He has already failed one abr (hearing test) and has another one scheduled for next month and I made him an appointment with a pediatric eye doctor this morning (the earliest appointment they had was sept. 23rd.).

Weight

We took Tripp back to the pediatrician today for his 3rd check up since weve been home.  The first one was on June 2nd which everything was okay and he had gained a little weight since he was discharged from the hospital the day before, 12 lbs 2 oz.  The next visit was the following Wed June 6th.  At this appointment he had lost 1 oz, 12 lbs 1 oz. Today he had only gained 1 oz since last week 12 lbs 2 oz. He has dropped down to the 55th percentile in his weight, but is 24 in long which is in the 102nd percentile in his height.  Since he is not gaining weight along with his height we are going to start him on a higher concentrated formula so that he is getting the same amount of volume but getting more calories, hopefully this helps him gain the weight that he needs to gain.  Tomorrow we are traveling back to Wake Forest for a check up appointment with his pediatric general surgeon who did his gtube. 

Finally Home

On Thursday, June 30th we got the surprising news that we were going home the next day.  The Plastic Surgeon had decided that his jaw was where it needed to be and that he would distract one last time that evening and then stop.  That afternoon was filled with videos we had to watch and other surverys and things that had to be done in order to leave the hospital.  The 3 of us, Ricky, Tripp, and myself, finally got back to our house at around 330 Friday afternoon and Bella got here shortly after that.  Our first night at home actually went pretty well, Tripp slept the whole night both Friday and Saturday nights. Bella is in love with her new brother but she is still also adjusting to not getting all of the attention, but she is a great big sister! Saturday evening we did have a little excitement when Tripp pulled his gtube out.  This ended up with a surprisingly quick trip to the ER to have it placed back, they actually said that this happens quite a bit but hopefully no more for us. But other than that Tripp has just been getting used to being home and we have been trying to get somewhat of a schedule of how a normal day will be.  Saturday morning we had a well check up, thanks to our awesome pediatrician with Saturday hours, and it went well.  He weighed 12 lbs and 2 oz at his appointment, so he is finally gaining weight without losing it.  We will be going to his office pretty often just for weight checks to make sure he is getting all of the food is needs. He will be finding us an audiologist and a gi doctor here (for gtube) for check ups next week and we will continue with ent and plastics at WF.  We will be traveling there the 13th, 19th for sure and then a couple of weeks after that to have the distractors removed, and about 2 weeks after that to have another swallow study done.  Were hoping these results will be better and at that point we can start working with a bottle again. If there is still any aspiration, they will continue to schedule swallow studies around every 6-8 weeks. After that he will have regular check ups with several doctors in Roanoke and at WF to make sure everything is going the way we want it to.  His next planned surgery will be around 8-10 months when they will fix the cleft in his soft palate and they will also undo his tongue-lip adhesion at this time.  And then another surgery to reverse the gtube, this will be when he is able to eat everything he needs to without aspirating.  For this were hoping before his birthday, but in some cases it can take much longer. 

Even though this is no where near the end of this road for Tripp, at least now we are all home as a family together.

God is good, all the time <3