Tuesday, March 13, 2012

Bee-ography Monday

It's Monday... and we're happy to share another bee-ography from hydran-angel, Oryen's, mommy Jerry Lynn. **If you'd like to submit your story of how a diagnosis of hydranencephaly has touched your life, email me at: President@HydranencephalyFoundation.org.
From Ry's mommy: I went for an annual papsmear. The NP decided to do a pregnancy test just because my menstrual cycle wasn't normal yet (6 months post partum from our first). The test came up positive (whoops!). I went home and Josh asked how my apt went. Told him they made me do a pregnancy test. He TOLD me it was negative. After I told him it was positive all he had to say was "Uh Oh" (hence why we call little man Uh Oh). He then proceeded to water our tiny little lawn... for two hours!

At 16 weeks I was at an ultrasound apt (high risk) and they told me I was having a GIRL!! I was upset because I wanted my little boy back. Along with the gender we also found out that our little one had a cleft lip. We opted for the amnio. A few days later the results came back to say I was having a boy. After arguing with the tech about the results and review of my previous ultrasound we found out that our "girl" was actually a BOY with gender anomolies. Somewhere before 22 weeks there were issues with my placenta producing enough HcG for him to produce enough testosterone,

Since we had the amnio results we decided to run chromosomes on Ry, Dad and I. Come to find out Ry had chromosomal abnormalities of #3 (missing a piece) #12 (duplicated itself to #13) and #13 (which was also missing a piece along with having a transduplication). Dad carried the abnormality of #3.

A few days later I realised I was leaking amniotic fluid. After confirmation they told me since I was only 16 weeks and some days that there was nothing they could do and that I would miscarry and lose the baby. After being stuck on strict bedrest at home my water resealed at 17 weeks. They took me off bed rest.

As we progressed with the pregnancy we learned that there was a heart condition, gender anomalies, cleft lip and that I had IUGR. At 32 he failed his BPP and NST and they decided to keep me for prolonged monitoring. After a few consitent contractions and another failed BPP they decided to run a contraction stress test. They administered the pitocin and next thing we know they had put me in full blown labor. I made it to 3.5 cm dilated when they realized. They took me off pitocin and immediately put me on magnesium sulfate for 72 hours to stop labor. That successfully stopped labor and I was thereforth hospitalized for 11 days total. I was sent home on strict bed rest once again after I hit 34 weeks.

A week later at 35 weeks and 1 day I went in for an apt and little man failed his NST again! I recieved a BPP which he failed. The blood flow to the placenta was diminished and it was causing issues. Dr looked at me and said "well you're having a baby today." We prepped for induction and within two contractions his heart rate was dropping drastically low. Time for an emergency c-section. So emergent Josh almost didnt make it and he was on hospital property.

Oryen Michael Scott Davis was born 10/24/2011 at 13:33 at 4 lbs 13 oz. I cried as I heard him squeak.


They took him to NICU where he was ventilated and stabalized. It was learned he had cysts on his brain along with an adrenal hemorrage. Neither which they were to concerned with. The next morning they took him off the vent and I was able to hold him for the very first time. Born with no hair on the top of his head he looked like a miniture old man. He was the cutest thing I have ever seen. 
It was a bumpy ride from the beginning. Because of the genital anomalies we were advised to do a sex change. So we mentally prepared for that by dressing him in pink. After about 3 weeks of being dressed in flowers and butterflies new hormone results came back surprisingly normal for male and he went back to being a boy. He sure did look cute in pink though!
After multiple attempts with multiple bottles and nipples and swallow study it was determined that it was in our sons best interest to have a G tube placed for feedings due the severity of the cleft lip and palate. So November 23, 2011, the day before Thanksgiving, our tiny little baby underwent 4 procedures in one. He had a bronchoscopy done to check for a cleft trachea which there wasn't, a correction of a malrotated small bowel, appendectomy, and a G tube with a nissen. Surgery went well and was accomplished in only a few hours. Recovery on the other hand was difficult. He had a lung collapse, contracted pneumonia, aquired severe pulmonary edema, and was experiencing severe bradys and desaturation. Along with those he needed a blood transfusion, which he contracted an infection from so he was also given a lumbar puncture to test for meningitis which thankfully came back negative.
He started finally coming around after weaning off his pain medication he was more alert and getting back to his old crazy self himself. We get a phone call the next morning at 5 am saying that he decided to pull his vent tube out on his own account. This would not be the last time. He extubated himself 3 times total. Thats when the Drs learned that no matter what he was going to do things his way. After the third time they decided to attempt high flow oxygen instead. To our relief it worked wonders.
After living in the NICU for a month and a half. We got to take our little man home on December 14, 2011. We were home for 37 hours before returning to the NICU for preventative antibitics due to the fact that he was having trouble breathing. After another 72 hour stay we were able to go home again.
We got to spend our very first christmas together as a family. New years was a wonderful experience also. In the time that we were home Ry rolled himself over at two months and was doing all the things normal babies do at that age.
On January 5, 2012 we went for a routine cardiology apt to have his heart looked at and discuss possible surgery. While at the apt Ry quit breathing. He went into full blown cardiac and respiratory arrest. He had to receive manual CPR and was transported by ambulance right across the street to the hospital. There he was once again, with tubes down his throat being sedated. While in the PICU, he crashed 2 more times and we finally came to the decision that it was best for him to be transferred to Denver Childrens Hospital for a possible trach.

While in Denver he crashed once more and the Drs decided there was an underlying cause to these episodes he was having. They thought back to those cysts on his brain from when he was born and decided to look at them again. This time they were not two little tiny cysts. They were all over his entire brain. He was taken for an MRI. From the MRI we learned that 2/3 of his brain was covered in fluid and he had a smaller than average brain stem. He was diagnosed with hydranencephaly malacia.
They said my son would never walk talk suck swallow or even survive. We were advised to for lack of a better term, pull the plug on him. We had countless arguments with Drs about quality of life and that what accomplishments he had made were not primitive like they kept telling us. We refused to give up on someone who fought so hard just to be in this world. We would not give up until he did. We pleaded with God. We pleaded with Ry. We were willing to plead with anyone we could just to make the right decision. And we did. We didn't give up on him. He astounded Drs and nurses.
Then on Feb 9 2012 Him and God were done talking and he decided it was time to go home. He pulled out his vent tube on his own. Drs say they don't know how he did it and I said that because he did what we asked. He didnt make us make the decision, he made sure we were with him, and he did it when he was ready. Our little baby knew more than we did and he knew it was time. We hold no regrets because we never gave up on him. He earned his wings breath by breath.

Oryen Michael Scott Davis 10/24/2011 at 13:33 - 02/09/2012 at 16:32. Our miracle has earned his wings!
 

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