Thank you all for your support! Your comments are helping me cope. For my friends who have brought dinners, we truly appreciate them. Some days I don't feel like getting out of bed, yet going to the grocery and/or cooking so this has been a huge relief!
Many of you are asking if there is something you can do for us. In lieu of flowers or donating towards a memorial, I am requesting people give back to an organization that helped me get through this journey. The Nayeli Faith Foundation covered my stay in S.F. to help ensure I delivered at UCSF and they provided food. This really helped keep focus on baby and not the financial stress. Please send donations to:
Nayeli Faith Foundation
P.O Box 3192
Danville, CA 94526
Other organizations that have also provided us support are:
http://www.cdhdonations.org/
http://www.breathofhopeinc.com/
https://www.globalcdh.org/Donations.html
Your donations to any of these organizations, on behalf of A.J., would make me feel good knowing that I am able to pay it forward to another CDH family in need.
Monday, March 29, 2010
Austin was born 3/24 at 6:09pm and gone 3/26 @ 12:15am
How does a baby who has people from all over the world praying for him not survive? Not only that but he was a big boy...8lbs 13.5oz and 22in long! The biggest guy in the NICU, yet the sickest. He was suppose to be strong. I really thought he could fight all the odds. This wasn't suppose to be this way. I have all the post delivery pains but no baby! I want to understand why this has happened. I feel like I should have gone to Dr. Kays in Florida. I just feel like something went wrong because A.J. was suppose to make it. I want to feel his little hands and feet, his breath against my neck, his heartbeat against mine. I need him!
Thursday, March 25, 2010
AJ arrived 3/24 a little after 6pm
After 16 hours of labor, using cervical softeners, pitocin, and finally forceps to help get this little guy (actually big guy 8lbs 13.5oz) out, he finally made it. It was the hardest labor I've experienced but what else could I expect. This whole journey has been rough and I'd gladly suffer to bring my son into this world as safely as possible.
A.J. had a rough start from the beginning which was not a good sign. At first doctors didn't think he'd be strong enough to ventilate. After a few hours they did get him on a high frequency ventilator and Nitric Oxide. He took a turn for the worse and they needed to give him blood. Things just kept getting worse so the doctors had spoke to me about letting him go. I had to make a decision after no sleep for 38 hours or food for 24. I told them I wanted them to put him on ECMO to buy us some time. I had really hoped these decisions wouldn't have needed to be made so quickly. The first ECMO machine they put him on had air bubbles, they caught it quickly and suctioned them out, however, it took approximately 40 minutes to get him transferred to a new machine. During this time he had to be revived with chest compressions and will likely suffer brain damage. The only good news so far is that he is on the new ECMO and all the numbers look great. However this was a temporary ECMO so sometime today they will need to transfer him to a permanent one. He is at high risk for bleeding in the brain so they will be doing ultra sounds regularly to check on that. This has been an hour by hour process with many bumps in the road. I still haven't slept much as one could imagine but I hope to have some one on one time with AJ today to connect with him spiritually. I want to do what is best for him and I still feel there is HOPE!
Here is a picture of Austin Josiah, my hero, before ECMO....
A.J. had a rough start from the beginning which was not a good sign. At first doctors didn't think he'd be strong enough to ventilate. After a few hours they did get him on a high frequency ventilator and Nitric Oxide. He took a turn for the worse and they needed to give him blood. Things just kept getting worse so the doctors had spoke to me about letting him go. I had to make a decision after no sleep for 38 hours or food for 24. I told them I wanted them to put him on ECMO to buy us some time. I had really hoped these decisions wouldn't have needed to be made so quickly. The first ECMO machine they put him on had air bubbles, they caught it quickly and suctioned them out, however, it took approximately 40 minutes to get him transferred to a new machine. During this time he had to be revived with chest compressions and will likely suffer brain damage. The only good news so far is that he is on the new ECMO and all the numbers look great. However this was a temporary ECMO so sometime today they will need to transfer him to a permanent one. He is at high risk for bleeding in the brain so they will be doing ultra sounds regularly to check on that. This has been an hour by hour process with many bumps in the road. I still haven't slept much as one could imagine but I hope to have some one on one time with AJ today to connect with him spiritually. I want to do what is best for him and I still feel there is HOPE!
Here is a picture of Austin Josiah, my hero, before ECMO....
Here is our first picture together while he's hooked up to ECMO......
Tuesday, March 23, 2010
Settled in Hospital Room
All settled in the hospital room. The have me on the monitors, IV is in, and they inserted something in me called Cervidil that will soften up my cervix so that it will be ready for delivery. It takes about four hours to work so they'll come back and check on me. After this they may start pitocin, depending on the results.
We have a pretty big room with an AWESOME view of the city! I am starring at all the lights right now and can't sleep. I am excited, yet scared. Our nurse is great. She is so accommodating it almost makes me wanna move in here...he he he. We just met with the neonatalogist and asked a few questions about what they'll do with Austin once I deliver. He will be immediately intubated and sedated so they can stabilize him to get blood work, x-rays, etc needed to determine how much lung power he will have. I believe his lungs will be better than they expect. I just feel it!
Well I should try and get some rest now just in case I'm in for many hours of labor. Goodnight :)
Thursday, March 18, 2010
All settled in San Francisco
We are settled in S.F. now. I had an NST yesterday and another tour of the NICU. There was a baby girl with CDH there that we got to see. It'll be a total different experience seeing our baby there. It seemed kind of crowded this visit. Hopefully they'll make room for A.J. next week :). We met with the social worker and she keeps reminding us of the negative, URGH! I just want to say, "I KNOW but I am not willing to hear that right now"! Instead I stay calm and just focus on positive thoughts. I have no choice. Not even the doctors can predict how well Austin will do. It's so hard to see him so active in the ultra sounds making breathing motions as if he's perfectly fine. I know that won't be the case when he arrives but I strongly feel he's going to surprise many.
I find myself a little emotional since I've arrived. I had planned to do some tourist stuff but just haven't been up to it, kind of spacey lately. Tomorrow I have another NST and an OB appointment. I am trying to gather up any last minute questions I may have. With my forgetfulness lately, I can't seem to remember what I wanted to ask and, of course, haven't wrote any of it down.
Next Tuesday evening at 8pm, 3/23, I will be admitted. I can't believe how quickly this date is approaching! I really appreciate everyone's support and PRAYERS. Please please keep them coming! We went to a little burrito spot for lunch today and the lady behind the counter asked about my baby and I briefly explained the situation. She was so sweet and said a prayer with me right there at the cash register. I've never been a big religious person but this experience has definitely brought me closer to God.
I find myself a little emotional since I've arrived. I had planned to do some tourist stuff but just haven't been up to it, kind of spacey lately. Tomorrow I have another NST and an OB appointment. I am trying to gather up any last minute questions I may have. With my forgetfulness lately, I can't seem to remember what I wanted to ask and, of course, haven't wrote any of it down.
Next Tuesday evening at 8pm, 3/23, I will be admitted. I can't believe how quickly this date is approaching! I really appreciate everyone's support and PRAYERS. Please please keep them coming! We went to a little burrito spot for lunch today and the lady behind the counter asked about my baby and I briefly explained the situation. She was so sweet and said a prayer with me right there at the cash register. I've never been a big religious person but this experience has definitely brought me closer to God.
Friday, March 12, 2010
Last of my appointments in my town, Tracy, CA
Today was my last NST and Ultra Sound at the hospital in my city. I think the nurses are glad to be done with my little guy. He is ALWAYS a struggle to get a NST because he moves A LOT. It's never a quick visit for me. I am usually there for 2 or more hours trying to get a good reading for the doctor. It's going to be weird not delivering here because I have got to know the nurses and my OB/GYN and really like them! Next week I'll have two NSTs at UCSF and my first OB appointment with the doctor who will deliver Austin. Hopefully they'll make me feel just as comfortable as the staff here in town.
During my ultra sound today the tech took a picture that looks like Austin praying. It is precious! That is one great thing about all these appointments, I get tons of ultra sound pictures :).
During my ultra sound today the tech took a picture that looks like Austin praying. It is precious! That is one great thing about all these appointments, I get tons of ultra sound pictures :).
Wednesday, March 10, 2010
ONLY TWO MORE WEEKS!
Until Austin arrives, boy how time has flown by! The other day I received some sad news about another CDH baby, Baylee Grace, that was born last month who didn't survive or as they say "grew her wings." I cry and pray for her family. I am very aware of the reality of this severe defect, yet I still can't imagine going through what her family must be going through. I have managed to stay mostly positive this whole time and I don't want to lose that.
On a happier note, I now have a place to stay in San Francisco next week. Thanks to "Nayeli's Faith" foundation, we will be able to stay locally the week prior to my induction in case I go into early labor. I am very appreciative of the support I am receiving through this foundation as well as other CDH foundations such as Breath of Hope, CHERUBS, and Global CDH. I have learned so much from them and the members. We are truly blessed to have so many people praying for us.
Thank you all! I will post another update once I get settled in S.F.
On a happier note, I now have a place to stay in San Francisco next week. Thanks to "Nayeli's Faith" foundation, we will be able to stay locally the week prior to my induction in case I go into early labor. I am very appreciative of the support I am receiving through this foundation as well as other CDH foundations such as Breath of Hope, CHERUBS, and Global CDH. I have learned so much from them and the members. We are truly blessed to have so many people praying for us.
Thank you all! I will post another update once I get settled in S.F.
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