Medical Update

First of all, my great other half realized that I have not ever even posted Paxton's stats!

He was born weighting 3 lbs. 13 oz., measuring 16.5 inches long, at 5:54pm on Tuesday, July 13th, 2010. 

Paxton went down to 3 lbs. 5 oz. but as of 7/23 was back up to his birth weight and as of tonight was up to a whopping 4 lbs!  Congratulations, bud!

"Yeah Paxton, Go Paxton, Everybody say Yahoo for Paxton, Yahoo for Paxton!" This little guy is definitely Our Champ and is fighting really hard to be strong through all that he is enduring. We are so proud of him.

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It seems like this week Paxton has had many new challenges for the doctors to diagnose and decide how to proceed. This made for a good day/bad day pattern for mom and dad and baby. At least there were some good days in there! Paxton is now on quite a few medications to help with many of these problems. 

• They give him caffeine to try to help his system stay alert enough to remember to breath. 
• This week his PKU was high, so he has a med for that and unfortunately they had to put his IV back in. :(  
• On Thursday the doctors confirmed that Paxton "most likely" has glaucoma. :( They started him on a diuretic to help relieve the pressure. As of today it has been working! Yeah for medicine! Paxton really hates these eye exams where they pry his eyelids open and perform a series of tests. It is really hard to watch. We are just so grateful the medicine is helping. If the pressure goes back up, he will have an eye operation to open the ducts to drain the fluid better. We're not even "going there" about what it means if that procedure doesn't work. More to follow on that this week.
• As of Saturday's echocardiogram, the two holes in his heart have not closed any, so Paxton's feedings are still limited to a maximum amount for every weight he's at. Otherwise there is too much fluid in his body and thus work on his heart to move everything through. So far Pax has been gaining weight well and thus able to increase his feeds every time he does.
• Friday he had a very painful 'neurological event' (something like a seizure) yesterday for over an hour that was very scary to all of us in the NICU. It signals that some neurons were not firing the right way and he was interpreting things different than we normally do. :( We hope it doesn't become a regular occurrence.

The hardest moments are seeing him in pain and not being able to pick him up and hold him. Also because his case is truly one of a kind, often the drs are not sure if they should treat something as a prematurity issue, or a permanant chromosomal issue. 

Paxton also still needs to learn how to not stop breathing, something we pray for everyday. As you can see, we are very grateful for all of the prayers offered in his behalf.

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For those who are a little uncertain as to what things we knew Paxton could have due to his deletion and what he is dealing with now, I am writing the following.

As far as his chromosomal anomoly (Deletion 7 q22-q31.2), Paxton could have had any of these, due to reports from 12 other children that had these similar (but not exact) gene breaks:

-Cleft lip (no)

-Cleft palate (yes)

-6th digit on hand or foot (no)
-Ectrodactyly (split hand) (no)
-Epilepsy (not yet)

-Glaucoma in eyes (yes, still treatable at this point)
-Hypoplastic cerebellum (small 'back part' of brain, controls motor development) (yes)
-Microcephaly (small forehead), enlarged cisterna magna (no)
-Wide spaced eyes, low set ears (we think he looks truly perfect!)
-Heart defect (yes)

Other things Paxton is dealing with that were not reported in the other cases but he has, probably due to his chromosomal makeup:

-Echogenic kidneys (pelviectasis)

-Ventriculomegaly (extra fluid in the ventricles of the head/brain)

-His heart murmur/holes

-His breathing issues: apnea (obstructive (physical in throat) or central (brain))

-All the problems in his throat/mouth

-Glaucoma

-Small for Gestational Age (IUGR) (yes)

So far it seems he has great motor ability and can see and hear. We are so grateful for these HUGE blessings and hope they will remain with him as much as possible as he grows!

***

Really, looking at Paxton he looks so precious and perfect and beautiful that it is almost hard to understand that there is anything wrong with him on the inside. It's hard for me to realize he is 'different' and I wish I could know how he is interpreting the world around him, if he knows when his mom and dad are there, if he can feel of our love, etc. While there is so much we don't know, we have come to know Paxton does know when Mom and Dad are there, and we think he likes it.  :)  He will open his eyes and stare at us and grab our fingers tight. He is a pretty special boy whose spirit knows how to communicate love in his own BIG way. If you have been there you have probably felt it radiating from his isolette like we do and know that it is hard to leave him! It's my constant prayer that Paxton can feel of OUR love for him. I want to show him in every way we can.

After a very hard Thursday and Friday, Mom got the greatest gift ever...to hold Paxton again! It was the best rewarding hour for both of us. Paxton calmed right down and we enjoyed some traditional rocking and singing and stroking his sweet hair, etc... All the best things about being a mom! I'm so grateful for my very special time to be with you, Paxton. I can't wait until we can do it everyday. I love you.