Thursday, June 28, 2012

Houston?

Most of you have read how my appointment in Lubbock went.  I have been stressing about it ever since and feeling as though Lubbock was not the right place for me to get the care that Sunni is going to need.  Since I first started researching hospitals, drs, etc I have felt that Houston was the place. Well, with a  few peoples help it may be in the works.

One of our good friends from high school lives in Houston and is actually getting married to an RN that works in Houston (Hi Michelle!).  She emailed me after reading my blog and recommended a doctor (surgeon) there in Houston along with a ton of other information about CDH etc.  I finally today decided to email that doctor-- not really thinking I would get a response for a while.  I asked him how I would go about getting down there for care.  

He responded within an hour and told me that he gets a lot of referrals from Lubbock and Amarillo and that he was forwarding my email to his fetal team coordinator.  About an hour after that she called me!  I was getting my hair done so I did not answer but she left about a 5 minute voicemail.  That voicemail would have had me in tears had I not been in a public place.  It was SO informative, helpful, and caring.  She said that normally they get a whole team together to evaluate early on.  They look closely at the baby and decide what the plan of action will be.  I will be able to meet every dr at that time.  They would take me on a tour of the hospital.  The would co-work with my dr here in Amarillo so that I would not have to make that drive so often.  They usually have patients move to Houston at 36 weeks gestation and they can help me arrange to stay in the Ronald McDonald house which is right by the hospital.  When the baby is born they have a place (Ronald McDonald) IN the hospital that you can stay in while your baby is there.  She emailed me again with forms etc that my OB will need to fill out.  She said she knows my baby will be in great hands there.  WOW!  I was blown away.  They had 18 cases of CDH delivered in their hospital last year and more than that-- that they saw that weren't actually delivered there (does that make sense?).

ALSO--I talked to my sweet cousin Kim who also lives in Houston today and she has offered me to stay with her and her family whenever I need to.  She has an apartment behind her house she said I was welcome to stay in.  Her house is only about 14 minutes from the hospital.  She told me she would talk to a lady that she knows (retired RN) and ask her about the hospital that is in question (Children's Memorial Hermann) and seek her opinion.  As luck would have it, she ran into her at a Walgreen's in Houston shortly after we had talked. ((CRAZY OR WHAT??)).  The lady said that she would FULLY trust that hospital.

So although I didn't make any real progress today I have found comfort in knowing where I believe I am supposed to deliver Sunni and where she needs to be in order to have the best care possible.  I ask that my prayer warriors and supporters pray for this to work out for Sunni and our family.  Pray that everything works out insurance wise and so forth.  I plan on calling in the morning to see what I need to do to get an appointment and then taking this information with me to my normal OB appointment in Amarillo on Thursday (July 5).  Thank you for the many prayers you have already sent up and in advance for the new ones.  I have had a ton of support from friends, family, and strangers!  I'm grateful.  Thank you!

6 comments:

  1. Oh wow, that sounds so much better!! Your description of your first consult did not sound like what my experience of a quality consult should be; the one you described today sounds wonderful!! Praying that this is what you are looking for and what God wants for you!!

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  2. This is the best news ever! I'm so happy this is looking very good. What a wonderful powerful answered prayer. This is a good sign whit I know it!

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  3. So glad you found a place you feel good about and that the logistic side is starting to work itself out. Houston sounds like a great place to deliver! :) Will continue praying for y'all.
    Leslie

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  4. This is very good news. Once you set the care and everything in motion it becomes slightly easier to bear. I am delivering at UVA at 2.5 hrs from where I live and they were the same way. We met with the team and they put our minds at ease. Hang in there.

    Anu
    http://ourcdhherolittlea.wordpress.com/

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  5. Dear Whitney,
    I wrote you a big long reply to your last post about the MFM visit and it didn't publish. I am sure that blogger was like, "wha?! I am not putting ALL THAT in a blog reply!" I do go on. :)

    It is so important that you feel comfortable with your doctors before and after Sunni arrives. So Houston sounds like a great option, and the fact that they are willing to work with your closer centre so that you travel less... all the better. Good for you, mama, for following your instincts to get your family the best possible care.

    What did you decide about the amnio? In my other reply, I suggested that you could ask for a fetal echocardiogram. It is no more invasive than a regular ultrasound but the tech must be very highly trained and the results are reviewed by a cardiologist as well as the radiologist. If there are concerns about Sunni's heart, you might just want to have this information ... and likely reassurance.

    That said, do NOT let any doctor tell you that you have to do this or that for them to fight for your baby when she is born. That doctor's stats and comments were false, as well as manipulative. It's not even up to a perinatologist to decide what will happen at Sunni's birth - the neonatologist and her parents will work that one out.

    Okay, before I get too long-winded again... sending much care to you.
    Corinne
    Mama to Samuel, lcdh, Feb1/11
    www.samuelslight.blogspot.com

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  6. Hi! I'm sorry I have not stopped by sooner. I had a big long reply to a couple of your blog post ready to type out in my head and then Wyatt came 3 weeks early! I don't quite remember everything I wanted to say but what did stick was- follow your gut. If you feel like Houston is where you need to be then go. We've loved the care at Parkland and Children's here in Dallas and I wouldn't have changed a single thing so far. I also remember thinking something was off about your Lubbock doctor and the way he worded things and stuff. And what I wanted to say most was ignore all the statistics and numbers. One of the best pieces of advice we were given in the very beginning of the CDH journey was not to google. I looked up a couple of things but stayed clear of too much blog searching and statistics. Each and every baby is so different. Even our numbers and what we saw on sonos and MRI's were different from what our surgeon saw when he opened up Wyatt to repair his CDH. Looking at numbers probably would have sent me over the edge in stress, Just look at what they say about your sweet Sunni! :-) Let me know if you have any questions.

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