Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Saturday, July 9, 2011

thinking...

We are back home from our awesome vacation.  I don't have the pictures that my mom took so I'm going to wait to tell all about it. (She has the camera out boating).  To bad because Whitney is sleeping and my hubby is home to watch her. 

So an update on Whitney is that she still is not eating very well and always throwing up. She vomited in her car seat a few times on our trip and almost once or twice a day.   On vacation in Utah there were a lot of other babies and kids showing her how to eat and some moms would offer her a spoon full while feeding there babies and Whitney would just turn her head and cry.  They thought it unusual (which is true) and I thought their babies eating was amazing!  

The day after we got home, I put Whitney in her chair for breakfast and tried to feed her some baby yogurt.  To my amazement she took about 25 bites in a row! Willingly!  But later that day she threw up a few times and acted really tired.  The next two days she wouldn't take any solids but some spaghetti O's and threw that up.  I did put her back on the Alimentum Formula so that might be it too.  I know she's not getting enough volume so that can't be why she is vomiting so much.  Unusually Whitney threw up at 1 AM last night after only receiving 40 mL's of formula (night drip). 

Before our 2 vacations I was trying to ween her off of the NG tube but her weight gain was not great.  Even though I hate tube feeding her all the time and replacing the tube and her face getting sore from it. Whitney is clearly not ready to be without the NG tube, unfortunately. So I do my best to make sure she gets enough food a day to help her brain grow and body be strong.   I must say this is quite the daily battle.  During our lunch prayer, Thomas prayed that Whitney would tolerate her food, right after that she threw every thing up.... I really don't understand sometimes....but there must be a reason right?

Well, I can't believe that my baby will soon be ONE!  In less than 2 weeks!  I'm so nervous and excited.   I know that a ton of other moms always like to talk about this time last year but for some reason I really don't like thinking about this time last year....(of course now I am though, haha.)  I know someone who lost one of her twin boys to CDH a couple years ago and her blog about it breaks my heart.  At first I wanted her to 'get over it' but now I see no way how to. "your baby has gone to heaven, he doesn't need to suffer through this life" I thought. But when you fight so hard for so long to keep that baby alive, while his brother is healthy....you really can't get over it.

  Because even though  I hate to talk about it,  I think about what we went though with Whitney ALL the time.  During the day time I'm okay but when I'm falling asleep my thoughts always seem to wonder to 'those days'.  Sometimes to when I was pregnant, I was really sick for months, then I felt better, then the next month I learned my baby had something abnormal in her chest and was depressed for the rest of the pregnancy. Or the actual day she was diagnosed with CDH.  About all the Dr. visits and tests done on us.  And the saddest....the day she was born.  I always think about that dark, sad NICU, having to 'visit' my daughter. Always washing my hands, being told how she is, and taking pictures.  But like I said, I don't really like to talk about it or how 'strong' I was through all of this, but sometimes it is good to write about it and maybe one day I will stop dreaming about it. 

I hope to one day see the blessing that come out of all this pain, whether for me or her or from others.































5 comments:

  1. Oh Alicia, I love you so very much. You, my brother, and little Whitney. I can't think of any perfect words to say, but I hope you find some comfort in the fact that you are all extremely loved and prayed for every day.

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  2. Alicia, I understand the traumatization of the memory of having your baby in the NICU and having feeding problems. After Ramsay spent 25 days at St.Joe's NICU it was a traumatic event just to drive down grand road towards that area because it would trigger those memories and so much related emotion. I know it is hard. Just be patient and do the best you can to keep your baby healthy. Someday this will all be a memory and you will have learned so much! Keep on hoping and praying and perservering!

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  3. All of your feelings are 110% normal. I have a friend whose daughter was born with an encephalocele. She has a pretty awesome case of PTSD because of it even though her daughter managed to survive the surgery and is doing amazingly well.

    So the dreams and the haunted memories, those are totally normal for what you've been through. And when you're ready your Savior can heal your heart. Talking to a professional counselor can also make a huge difference. You might really enjoy http://www.bandbacktogether.com/ its a site created by the friend I mentioned earlier for people to come share their stories.

    And maybe this isn't the time, but I can already see blessings from your trial. Whitney is still here. That is a God's-honest-miracle - and you had the strength to blog about it so the whole world can watch as a miracle happened. Thank you for the increase to my faith that this blog has brought me. Your sweet baby girl is a fighter and that will serve her well in this life.

    Also there have been changes in you. As you've written this blog you've mentioned several times how your awareness, empathy and compassion for others has grown because of these experiences. Empathy is a hard thing to learn and an even harder thing to teach but its a very Christlike quality.

    I hope I've not stepped on any toes. You can feel free to tell me to shut up.

    And last but not least - I'm so in love with the latest Whitney pics! That little girl has a smile that is pure sunshine. She's so beautiful. You're gonna have to beat the boys off with a stick. :)

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  4. I may not know a lot about what you are going through...but it's a trial. A very hard one. When I was struggling really bad with a trial, I learned the true meaning of the Atonement. Jesus suffered and has felt EVERYTHING you are going through. I know it's so difficult right now but I really have a testimony of doing your best and relying on the Lord. He is there wanting to help you. This past year has really changed your life. Keep on keepin' on. Never give up and be strong for your miracle. Praying for you always.

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  5. Your post made me cry. I share so many of the same feelings as you. We're also going through the difficult feedings right now. It honestly is so time consuming and exhausting. Is your daughter on any reflux meds? We just got her prescription changed and we're hoping it helps. Good Luck with that birthday coming up!

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