Cyrus, my hero.. just diagnosed with Hydrocephalus

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Cyrus, my hero.. just diagnosed with Hydrocephalus

Postby BrandyJ. » Sun Oct 03, 2010 2:48 pm

I woke up in the middle of the night thinking my water had broken. It was not a happy thought considering I was 25 5/7 weeks pregnant. I ran to the bathroom only to discover that the wetness was not water, but worse..blood. I had had a major hemorrhage. I had been told at 20 weeks U/S that I had a low-lying placenta and not to worry because 90% of the time it would correct itself...Lucky me!

I went to the hospital and was admited for observation. I had sonograms, lab work, more sonograms.. I had a second hemorrhage 6 days later. I was just praying praying praying that we'd at least make it to 27 weeks.

I remained in the hospital the remainder of the pregnancy. I had 2 children at home and was a good distance away. I was depressed, lonely, angry...etc.

I had another bleed at 28 weeks and my doctor told me at that point that with the next bleed that he'd be forced to take the baby. The bleeds were so bad that I'd soak my sheets and the floor!

4 weeks go by..NOTHING.. I'm begging , pleading to go home, the placenta had corrected almost completely to be sent home safely. I thought I was going home. I was scanned one last time and a new discovery I had polyhydramnios and I hemorrhaged the next day and had a placenta abruption. Cyrus was delivered via emergency C-section.

Cyrus weighed a whopping 4 pounds, but the doctor said it was extra fluid. He really ended up weighing 3 pounds and 3 ounces. Cyrus had to intubated after he was born... not very common for his gestation. We were worried but confident everything would be ok. The next morning the doctor called my hospital room to tell me that Cyrus had a seizure. They did a head ultrasound and was diagnosed with a grade I-II brain bleed. Things were never right after that.

Cyrus had many many apneic spells with hundreds of resucitations and intubations. After 7 weeks at this hospital we asked to be transfered. We were transferred to Children's Milwaukee. No one knew what was wrong with him. He has a swallow study and upper GI and was diagnosed with SEVERE reflux and silent aspirations. He was having laryngospasms with refluxing.

We then placed a NJ tube. A tube that was placed down his nose to his intestines, by passing his stomach all together.. nothing to reflux, right? A few days later he became gravely ill. He was diagnosed with Group B Strep meningitis. He nearly died. We sat by his bedside not knowing what the next breath would bring.

He fought through the meningitis and remained stroke free..he was goign to live!! The NJ tube had worked decently. We then had a GJ tube placed.. a more permanent solution so we could go home. The GJ was a disaster! The nurses fed him through the wrong port and he had milk coming through his nose! the milk was supposed to be delivered to his intestines..no where near his nose! It was a HUGE disaster for many reasons, but the most important reason is Cyrus's heart rate dropped to 20 and his oxygen sats were 8%...yes, a near death experience yet again.

We fixed the feeding through the wrong port issue and managed to go home. Sadly, it only lasted for 4 days. Cyrus was readmitted for another month. During that month he had a Nissen fundoplycation to tie his stomach up so he can't reflux any more and need constant oxygen and resucitations. It was a success. We finally got to go home after a total of 6 months.

Cyrus was following up with all of his doctors and diagnosed with a condition called benign axial hydrocephalus.. a fancy word for a big head. A somewhat common occurence and is hereditary. But, because of his past history of brain bleed and meningitis we had to follow him carefully.

3 months later, Cyrus was diagnosed with true hydrocephalus. His head circumfrence jumped like crazy and his ventricles are doubled in size. He needs a shunt placement sooner rather than later. Fortunately, it isn't an immediate emergency and we have a few days to prepare our other children and lives for a his surgery.

I'm so scared.. for everything.. his life, quality of life, prognosis, .. it is a temporary fix to a permanent problem. He could have multiple multiple shunt replacements due to malfunction and/or infection.

he is such a happy boy. Meeting milestones, making leaps and bounds.. more than we could ever hope for...to be broadsided by this diagnosis is almost too much.

I'll keep you posted..thank you for listening.

hugs,
brandy
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Postby lys » Sun Oct 03, 2010 4:16 pm

Oh Brandy what a roller coaster!!! I sure wish you, your family, and your precious boy the best. What a little fighter you have in your hands. The shunt is something that will help control the amount of fluid, whch is a good thing!. I am positive that your little one will be fine. God bless you and your family. Stay strong.
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Postby macleesy » Sun Oct 03, 2010 7:53 pm

Oh Brandy, My heart just aches for you Honey, you have been through so much, and just when you think you are getting through it, they discover something else. Hopefully the shunt will work really well, without complication to give your precious little boy relief for a long long time.

Big hugs. xx
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Postby BrandyJ. » Mon Oct 04, 2010 11:20 am

Thank you sweet mommas!! It has been a long ride..and I appreciate your support!!!!!

BIG HUGS!
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Postby Cindy » Mon Oct 04, 2010 4:27 pm

Love you all!
Proud member of Cyrus army here!
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Postby BrandyJ. » Mon Oct 04, 2010 7:20 pm

Love you, Cindy xxxx
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Postby fodla » Wed Jan 05, 2011 8:24 pm

*lurking*

I know a child with hydrocephalus. He's sweet, smart, a great kid. He has a few balance issues, but other than that, he does really well. I do an annual community play with him, he's in a choir, and he does extremely well at school. Your kid will turn out great, too. :)
I'm Emma!

DD Jessie, 08/12/11
Current LO EDD 01/03/16
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Re: Cyrus, my hero.. just diagnosed with Hydrocephalus

Postby eggs#4 » Wed Aug 21, 2013 6:58 pm

Brandy, any new updates? I ask bc hydrocephalus is close to my heart. My son died at 10 days old from VACTERL with hydrocephalus. I'm always curious how other babies do.
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