Very Scary Day

Who could ever guess that something so sweet and tiny can have a problem so big and scary.

Today was a very very scary day. Bryson stopped breathing 8 times. His apnea problem has really come to a head and we are so thankful Travis is here for his son. He had to administer CPR to him a couple of times and rescue breathing the other times. Dana, Travis and I have been holding vigil all day and all night. Travis has gotten only a couple hours of shut eye in the last 24 hours and Dana can't remember when she slept last. It's now after 2:00 a.m. and I'm beginning to wonder if I could sleep after how rough the day has been for little Baby Boy Bryson. Besides, it's my shift to stand watch.

During these episodes, he will arch his back, open his eyes as much as he can, although he has micropthalmia, and hold his mouth open while holding his breath. He will turn purple and his lips blue. Dana coaxes him to breathe, I pray and Travis does what he does best, save lives. The U.S. Army has trained him well to work in the trenches. And believe me, this is as tough a battle as any conflict.

To top it off, the oxygen ran out and more was in the process of being delivered when another episode was happening. I don't think the delivery guy had really witnessed someone's dire need for the oxygen tanks he delivers and he looked a little tense. After I signed for the delivery, he said "God Bless the four of you" and booked it out of here.

Tomorrow Paula from Hospice will be coming by. I've not met her yet. Everyone from Kid's Path (a division of Hospice of Charleston) has been great. Amy has been one of our Nurses and Gretchen is our Social Worker. They have been extremely helpful, caring, kind and compassionate people. I admire what they do.

Mr. Cranky Pants & the Chunky Dance

I'm writing in purple for a reason. Apparently Bryson has had some problems with feedings, gas, possibly colic and we call him "Mr. Cranky Pants" when he gets wound up and won't stop crying no matter how you try to console him. He cries so hard he'll turn purple. It can be really scary because he'll hold his breath and you have to blow a little in his face and he'll start breathing again.

Dana & Travis had an appointment with a a different doctor yesterday at the Naval Hospital and he knew little or nothing about Trisomy 13. The first thing he said was, "Here, I've done some research on the internet", as he handed them about an inch of printed pages about the Mortality Rates of infants with Trisomy 13. That's great...we know...we know, but what about now, he is with us and alive now! He's surpassed your stupid mortality statistics so far Dr. Uncompassionate!

Since there was a possibility that Bryson may be in pain when he has those episodes, it was suggested by the Hospice Nurse Amy that he was prescribed a very small amount of Morphine to calm him down. We've not used it because Tylenol seems to do the trick. Besides, Mr. Cranky Pants hasn't shown up lately so hopefully we'll not have the need to use the Morphine.

We have another nickname for Bryson: Jellybean. His initals are BEAN (Bryson Elliot Allen Nault) and because he's so chubby, sweet and juicy, hence; Jellybean.

Bryson responds really well to his Daddy and calms down just by the sound of his voice. Travis plays with Bryson and is having fun with his baby boy. He will hold Bryson and do the "Chunky Dance". Bryson doesn't seem to mind, he's a very compliant baby. He loves to move around and be touched, tickled, given regular kisses and raspberry kisses.

Dana & I, well, we talk and coo and just love looking at him because he is so adorable and with those chubby cheeks, he gets plenty of kisses from us. Dana loves the way he smells. Baby lotion, baby powder, baby's breath...it's intoxicating. As for me, I have to see him every day for my fix. It's like an addiction. I gotta have my fix of Bryson.

Living with Trisomy 13

My previous post dealt with the clinicians and doctors take on Trisomy 13 or Patau's Syndrome. This link http://www.livingwithtrisomy13.org/index.htm (click on Photo Albums) deals with families that offer help, hope and remembrance of their own Trisomy Angels. Bryson has his own page. I have spent a lot of time at this website, learning all I can about what it's like to care for a Trisomy 13 diagnosed child. It appears that if you are a persistant, informed parent advocating for the best care possible and not accepting of the original thought that Trisomy 13 is not compatible with sustaining life, your child can get past the hurdles that life has given them.

What is Trisomy 13 or Patau's Syndrome?

As many of you may already know, my Grandson, Dana & Travis' son Bryson was born with a very rare syndrome called Trisomy 13 or Patau's Syndrome. Many clinicians and doctors will no doubtedly say that the Syndrome is "not compatible with sustaining life" or the child will have a "failure to thrive." They tell you to take your baby home and love him and give him comfort and that there is nothing that they can do. They even prepare a DNR order for you.

Most babies with Trisomy 13 either are miscarried, or stillborn and only 1 in 10,000 resulting in a live birth. Bryson has already bucked those odds by being born at full term and at 9 pounds 3 ounces. I pray every day that he will continue to stump us and the doctors. I'm not saying life with Trisomy 13 is easy, it is not...it's a very hard road to travel. This leads to the question of Ethics. What is proportionate or disproportionate Healthcare with Trisomy 13?

http://www.ascensionhealth.org/ethics/public/issues/trisomy.asp

The following link had the most comprehensive description of Trisomy 13 and many of the problems children diagnosed with it are faced with. There are four forms of Trisomy 13, Full, Partial, Translocation and Mosaicism. Bryson has been diagnosed with Full Trisomy 13. To assure you, it is not genetic or hereditary, but a chromosomal disorder or a "fluke" of an extra chromosome 13 slipping in at conception from either the sperm or the egg; then further with each cell division during fetal development the extra chromosome 13 is in each and every cell. (Full) This sends out mixed up signals in the developing fetus where things are to go and how everything is formed.

http://healthresources.caremark.com/topic/topic100587269

Bryson has some scalp defects (cutis aplasia), small eyes (micropthalmia); a cataract on his right eye and a misformed iris in the left (Coloboma) he is likely partially or fully blind. He has cleft lip and cleft palate, calcification on a part of his brain, underdeveloped lungs, a small hole in his heart (ASD or Atrial Septal Defect); cysts on his kidneys and on his spleen; abnormal genitalia; undecended testes; six fingers on each hand (Polydactyly) and six toes on his right foot.

Here's Bryson sleeping snug as a bug.
He's 2 weeks old

Bryson's Birth Stats

The purpose of this blog is to communicate with family and friends about Bryson Elliot Allen Nault. Born June 9th, 2006 at 11:26 p.m. 9 pounds, 3 ounces and 22 inches.