Wednesday, July 7, 2010

HBOT to do the therapy or not?

We are coming close to the babies 1st birthday. I'm just sitting here reflecting on the last year of my life. This time last year my babies were still all safe inside me while I lay in Winnie Palmer Hospital on bed rest. Side not I thought it was ironic that EMS was taking another mom to Winnie Palmer hospital on Sunday with a multiple pregnancy. I don't know her details because of HIPPA. I know she was approximately 19 weeks. Not sure if she was carrying twins or triplets, I had heard there was another triplet mom up in mother baby with 1 babies membranes ruptured a few weeks ago. I know she was not 24 weeks yet. Not sure if this is the same woman I seen leaving. Anyways..just recalling that I sat there looking out the window at the fireworks on July 4th from the 5th floor of WPH. After I watched the lady leave on the EMS stretcher and took our elevator key back from the EMT for labor and delivery, I had to go find a quite spot. I didn't want people to see me cry. I cried for myself, I cried for that lady, I cried for all the babies fighting to live in the womb and in the NICUs. I prayed that that lady have a positive outcome.

I just read an article with some facts that I'm sure I posted when I was pregnant.

Just the odds of what happened to me:
1 in 8100 woman conceive spontaneous triplets in different combinations.

odds of fraternal twin 1 in 95

odds of identical twins is 1 in 285

this some how amounts to 1 in 8100 LOL

The odds of triplets with 1 resulting with CP is 45%

the odds of identical twins developing TTTS is 10% of all pregnancies which apparently amounts to about 2000 case a year across the United States.

So I wonder what the odds are for a spontaneous triplet pregnancy resulting in a set of identical twins and 1 fraternal baby. With the identical developing TTTS that by the grace of God does not affect them until they are 25 weeks. They develop stage III TTTS. Are delivered at 28 weeks. The delivery results in 1 healthy baby, 1 baby with no other complications (meaning his lungs, heart, kidneys etc are normal) except Spastic quadriplegic Cerebral palsy and Cortical Visual Impairment from the neurological damage, and 1 baby that lived for 6 1/2 months with severe chronic lung disease that eventually lead to respiratory failure and death. Though Logan had sick lungs from the beginning. I truly believe that he would have lived if he did not get RSV when he was 6 weeks old. I do blame Winnie Palmer for my son's death. I can't help it. If he would have died and never had RSV not once, not twice, but 3 times, and if he would have never had a mysterious broken femur shortly after his 1st bout of RSV or any of the other infections...I would except that it was "just his prematurity" Babies born at 28 weeks have a 90% survival rate...and once again the last statistic

Logan was 1 of the 10% that did not make it.....
Jacob was the 1 unfortunate triplet that had the 45% chance of CP though it is not know if his damage occurred in the NICU or before he was born. I think that it happened in the NICU, because the amount of damage he has in his brain should have been seen on the brain scan they preformed when they were a week old. Correct me if I wrong, do they not see large portions of brain missing that are replace by cysts on Ultrasound when they are look for brain bleeds. Because all 3 boys reports were normal at 1 week according the their medical records.

I wonder if I will have these loathing thoughts every July of my fond and not so found memories of the month I spent at WPH in July 2009.

I am grateful to the caring nurse who saved 2 of my son's lives and gave me 6 1/2 months to know my 3rd son, but I can't help but be angry for all the "complications" my babies had.

Once again now that I am done loathing I will remind myself that the events that occur in my life is what God has willed for me and my family. My purpose in life is to take care of my children. My purpose is to give Jacob the best life he can have with his disabilities.  Life is so unpredictable and I am going to take it one day at a time

Hyperbaric Oxygen Therapy will be my next adventure with Jacob. To go along with all his other therapies I am going to dedicate 2 months of my life starting in September to HBOT in St. Pete Monday through Friday an hour a day for 8 weeks. Heck, if I can drive back and forth to Orlando almost every day for 6 1/2 months I can do it again to St. Pete. I am not 100% on going yet, but I am set to go in September. I have run it by the pediatrician. She is going to do a little more research for me and also talk to his neurologist about the risks and possible benefits. I am excited but worried that I may be just wasting my time. I actually thought it might be cheaper to rent my own HBOC and yeah it is like $2000 a month I think not. The place I plan on going is a charity where a family provides the services out of their home for free. They have a website for anyone who may be interested is http://www.chamberofhope.org/

I think that is it for now. BTW it is almost 1:40 in the morning and my 3 year old is still AWAKE!

1 comment:

  1. Hi I just found your blog on Hyperbariclink where my blog is also linked a few stories above yours today. I have quads and a two year old. We have a lot in common. Bedrest, NICU, etc. I am terribly sorry about Logan. It isn't fair is it? My daughter has autism and we are trying HBOT for 20 dives. I am seeing something. Not sure if its from the dives or just coincidence but if you want to take a look here is the link :http://bonnieshouseoffun.blogspot.com
    have a good day.

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