Looking Back - B

I was talking with my dad and he mentioned that he found  some emails that  I had sent from the first few weeks of Brayden's life.

I thought I would copy them and past them for anyone that was interested!  It's amazing how far he has come and how much he continues to change.

May 13, 2008

HI everyone!  Just wanted to send an update on Brayden.  He is now 6 weeks old and as cute as a button.  He is officially 5 lbs 1 oz.  He is doing great with just a few concerns:  he needs to be able to feed from a bottle for a full feeding which is about 1.5 oz and they are still a little concerned about his red blood count being too low.  He has been on iron and just this week they started him on a shot everyday for a week to help his red blood cells mature faster.  If this doesn't work, they may look at a blood transfusion but as of right now, they want to see if he can regenerate his cells on his own.  They think that when his blood stablizes, he will be able to be weaned from the oxygen and he will start eating more from a bottle as he isn't working so hard to regenerate his blood and will be able to focus his energies on other important things.  They are still saying that it may be a few more weeks before he is able to come home, probably not by his actual due date, but close.  

 

May 22, 2008

Hi all.

 

Just wanted to send a quick update.  Brayden is doing great.  His blood cell count is back up so they won't have to do a transfusion.  He is slowly starting to eat on his own and is still gaining weight.  He is 6 lbs now!!  Can you believe it?!!!  He is looking bigger and hopefully it won't be too much longer before he is able to come home.  He needs to be able to eat more.  Oh...he was off of his oxygen today, he has been doing well without it.

 

Okay, I'll send more when things change,

June 4, 2008

Hi there,

 

Brayden is about 6 1/2 lbs, he has been off of oxygen since last Thurs and is doing fine with the whole breathing on your own, the only reason that we are still at the hospital is that he isn't eating on his own yet.  He really doesn't show interest in the bottle.  He has to take at least 40 ml on his own consistently before they send him home but they are considering sending him home with the feeding tube since that is the only reason that he is here.  He will be full term tomorrow so they will reevaluate him and then decide what they are going to do.  They are going to do some tests to make sure that there is not a medical reason that he is not eating. 

June 12, 2008

Hi all!!

Just wanted to let you know what was happening.  Brayden's doctor wants to keep him until next week so that he can work daily with the occupational therapists to see if he can't eat better with a bottle.  They will send him home next week - not sure what day yet.  He will have to be fed with a feeding tube and if after 2 months he sill hasn't figured out the bottle, he will be back to have a tube surgically inserted directly into his stomach.  He is weighing in at 7 lbs 13 oz.  He will be 11 weeks old on Tuesday.  He is still cute and is starting to get the chubby baby legs.  We look forward to him being home.  I am sure that Richard will have to acclimate to sleeping on a bed again as he has been sleeping on a couch and I in a lounger chair for the past 11 weeks!!!  Just kidding!!!

Alexia, Christian and Sarah are all doing well. 

That is just about all for now. 

June 20, 2008

Hi. 

Brayden is coming home tomorrow morning!!!!!
He will still be on a feeding tube as he still is not eating on his own but hopefully this will be short term.


Thanks for all  your prayers and support, 
Crystal

June 23, 2008

Well, he was "desating" I guess, and he turned blue.  They put him back on oxygen for 24 hours and then took him off again- when they tried to get him fitted for his car seat yesterday, he passed the test so when we got there last night, they told us that he was being discharged today!!!  I called this morning and he had to have a hearing test and his eye screening and then he was going to be a free man!!  Brayden will be 12 weeks old tomorrow.
We will be leaving in about an hour to go get him.

June 30, 2008

Hi. Some of you have already heard, but I wanted to send another Brayden update. Yesterday as we were leaving for church, Brayden stopped breathing.  Richard performed CPR to revive him and he finally started breathing on his own by the time the paramedics arrived.  We returned to Children's Hospital where his is currently in the NICU again. There have been numerous tests and so far, they have all come back fine so they are still not sure as to why he is regressing in his breathing development and at this point (2:00 pm Monday) there isn't a plan of action in place.  He may be here for a while again while they monitor him and try to figure out what is happening. This has been really hard on us as we thought that Brayden was " a free man" and we had him home for 6 days.  What an emotional roller coster ride.  Thanks again for all your support and prayers, Brayden still needs them so he can come home again. Until further information, TTFN, Crystal July 14, 2008 Hi all. Well, I don't really have much to update.  Brayden is still in the NICU.  He is 10 lbs 4 oz.  He is 3.5 months old.  He is chubby and is really cute. So, medically......  they did a PH study to see how much he has reflux.  His day is spent 20% of the time with reflux or really bad heart burn as most of us can better relate to.  They wanted to do this study to see what the possibility of him not breathing was due to him inhaling the stomach acid.  They say that 20% is severe, but not the most sever that they have seen.  They are looking into a surgery called Nissen, where the tighten the top of the stomach thus eliminating the chance of him refluxing.  They are also looking into the possibility that the reason the he doesn't eat well is due to the fact that he knows that it is going to hurt so he doesn't want to.  They are looking at inserting a "g-tube" directly into his stomach so that he won't have the irritation from the "ng-tube" down his nose and esophagus.   They did a sleep study last night where they hooked him up to about 30 leads so that they can monitor all of his activity during sleep.  They are looking at all of him to see if everything is firing correctly and to see if they can find a possible cause for him not breathing since him not breathing happened while he was sleeping.  They also can rule out some disabilities by doing this test.  I guess that there are some syndromes that can be detected in babies while they are young by watching their physical movements as they are sleeping.  I won't know the results for this for a little while. They next thing that they are looking at is doing an extensive EEG to check the possibility that Brayden had a seizure and that caused him to shut down.  They say that even by doing an EEG while he is not actually having a seizure they can look at the activity of the brain and determine if he is prone to having them.  I am not sure when they will do that and again they might not do it based on the results from the sleep study.   Brayden had an MRI and it came back fine.  His blood work is still showing fine.  They are going to follow up in a few months with the "bump" on the underside of his tongue but they have said that it is of no concern now.  (The bumps are called papalomas sp??  and the one's that they removed when he was first born turned out to be extra cells not cancerous so they are just going to watch this one as well) The ophthalmologist ( okay so I really don't know how to spell it but the eye people) are coming to look at him today as there is concern that he doesn't ever seem to focus on anything, or anyone and he is always shifting his eyes.  They want to check the physical development to see if there is a physical problem with his sight.  Really, they can't know for sure how much he can actually see until he gets older but they can check the development to see that it is developing correctly.  They are going to look at his left eye as it seems to be lazy and the eye seems to always be a little swollen.   Okay, so I think that about sums up everything.  So really what it comes down to is there still is not an answer as to why this happened and how can they prevent it.  They are just trying to rule out all possibilities so that it won't happen again.   I am leaning a lot about medical procedures and it looks like he won't be home before August (maybe).   I will send more when we hear,  Crystal , Richard, and Brayden July 23, 2008 Brayden's Home!! Brayden came home yesterday.   We still have a lot to do for him-follow up appointments, diagnosis, etc. He is home on oxygen (24 / 7) and an apnea monitor.  We are learning to use the "g-tube" to feed him. Yea!!  We are all doing great - extremely tired - but great!! Thanks so much for your prayers and support! Crystal and family November 11, 2008 HI.  It seems that it has been a while since an update on our family........   We are doing good.  Brayden is 7 1/2 months old and still has significant delays.  His adjusted age is 6 months old, so basically he should be physically doing what a 6 month old is doing but he is not.  He has hypotonia like Christian and is showing a lot of signs of physical delays like Christian.  He is still more like a 2-3 month old.  He weighs about 15 lbs 9 oz.  They still haven't ruled out that he has Joubert Syndrome, but we won't know unit we see Genetics in January.  We went to the ophthalmologist and she wants to do an ERG (electroretinalgram)  where they do a study of the electrical activity of his retinas.  They have to put him to sleep for the procedure and it will take about an hour and a half.  They are going to do that on December 2.  Also on the second at the same time, ENT is going to do a procedure on the glands around his wind pipe.  They are very swollen and cause a risk of closing off the windpipe so they will go in a make a small incision to create more space.  They said that even though he had the surgery on his stomach to help with the acid reflux, he is still having reflux causing the glands to remain swollen.  They increased his meds to try to get the swelling down.  ENT is also going to do a bronchial scope again and do a biopsy of the bump under his tongue.  This will also take about an hour and a half and then he will have to stay in the hospital for 1-2 nights depending on how he is doing.  We tried to eat solids yesterday with his OT, but I just don't know if he is ready .  He doesn't know what to do with his mouth yet which has been most of his feeding issues.  He can't figure out what to do with his tongue.  It is hard trying to teach a baby to do things that normal babies do by instinct.  His OT thinks that it is neurological and perhaps he should see a neurologist.  Actually his opthalmologist asked if he ahad been seen by neurology as well.  His sleep study is this Sunday night and hopefully in the next week or two we will have the results from that and know if we can take him off of his oxygen.    Okay, I was diangosed with pneunomia again and have been on meds and breathing treatments for that.  I went to the dr yesterday and she said that my lungs were definately sounding clearer and i am to continue the breathing treatments until I stop coughing.    Christian and Alexia are doing good.  They are enjoying school.  Christian has started therapy twice a week now and we are trying to get him speech therapy as well.  He got his new supports which we now call them his soccer ball or football shoes because that is what picture he picked for the velcro closures.    Sarah is on a "pretty" kick.  She has to wear a dress all the time and her church shoes.  She always has to have her nails painted.  She is so funny with her pretties and if something is not right, we have to fix it.  It is a battle to get her into pants or pj's now!!  I think that she is just funny.  She will put her clothes in the washing machine if they get a tiny bit of dirty so that they can be washed.  We go through 2-3 dresses a day because of them getting dirty!    Anyway, things are good and we are always busy.    Take care!  Crystal and Family