Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, August 10, 2010

Feels like we're really a family

Thomas writing!

I've never been more excited knowing that I'll get to really be a dad now, and my love for my little Whitney keeps growing more and more each day I see her. It's really starting to feel like we're a family. on Aug 6th, I got to hold my daughter in my arms for the first time. I was nervous because she still had her ventilator taped to her mouth, which was all attached to the breathing machine, but I was able to get comfortable and relax with my baby. I got to look into my daughter's eyes and she looked back up to me. I could feel the warmth of her body through the blanket that swaddled her. It was amazing! She felt so delicate in my arms. Incredible!

When Whitney was super critical and hanging on to life support, there seemed to be an invisible emotional wall between Whitney and me that kept me from feeling a strong bond with her, sort of like an emotional defense mechanism. If anything bad were to have happened to Whitney as the doctors originally anticipated, I didn't want to be a total emotional train wreck (guys CAN have emotional tran wrecks, too). I needed to be strong for Alicia, for our relationship, and for myself. I know perfectly well where ALL infants go when they pass away, and I have a strong testimony of the gospel Jesus Christ and of the plan of happiness that he has set in motion. So I didn't need to feel bad. But still, it's a complicated feeling that I think few if any of my close friends and family truly can relate to.

I remember driving to and from the hospital in those first several days. I had a lot of conversations with God during those short drives, pleading with Him to save my daughter and to acknowledge the prayers and faith that so many of you have offered. At the same I was afraid that maybe what I wanted wasn't what God wanted. And that if that was the case then I plead that I could accept His will.

The doctors had talked to us about ECMO many times and you could tell that they didn't really want to do it because of the low success rate and the pain, discomfort, and possibly lifelong mental and physical complications it could cause to the baby. As the father, I certainly don't want my baby to endure pain, suffering, or complications, but the other alternative was "Comfort Care", which is like hospice for infants. I couldn't discern what was the right thing to do. Was there a right or wrong choice? I didn't know, and I still don't know. But Heavenly Father had a plan for whitney that he didn't want messed up by a confused dad, so Heavenly Father worked through Alicia the mom. I wasn't with Alicia when she signed the consent forms to put Whitney on ECMO because I got to the hospital just 10 minutes too late. The doctor was just leaving Alicia's room when I got there. When I saw she signed the ECMO consent forms, I felt very relieved because that decision was now behind us. Alicia was firm in her decision to put Whitney on ECMO, she's always been firm in that decision. If Alicia had put up any "emotional defense mechanisms" like I had, then I surely couldn't tell because she fought to make sure that Whitney was given EVERY chance possible to survive. In hindsight I'm so glad Alicia took the helm, because Whitney is a miracle baby and is beating Right-Sided Congenital Diaphragmatic Hernia against all odds.

The doctors said that they expect to have Whitney in the NICU for at least another two weeks or more depending on if they can take her off the vent completely, if she can tolerate feedings, and if she heals up without any complications. Two weeks would be considered a Home Run, but we'll keep our fingers crossed.

An update on Whitney as of today:

1) They turned down her ventilator to 25. Don't ask me what that number means, 0 is the best which means there is no more ventilator support needed. The ventilator settings used to be much higher than 25, and they have been decreasing the settings without interruption for several days now. They said that when they get down to around 20 they may try and see how Whitney does without any vent support.

2) Whitney is completely off Morphine (as of 8/5) and completely off the Fentanyl (as of 8/7). These are two of the pain medications she's been using, and she's been doing just great without them. There were withdrawl symptoms, so they they didn't just cut off the meds, they had to wean her off them, but as of the aformentioned dates, she's received none of those drugs.

3) Both Alicia and I have been able to hold our beautiful daughter in our arms several times and it's the most awesomest feeling in the world!

4) At first Whitney wasn't tolerating her feedings and threw up each feeding she got. The doctors figured that it was because of her surgeries and withdrawl symptoms, so they decided to let Whitney rest a couple days. They tried doing feedings again yesterday and today, and she has been digesting it just fine now that she's all calmed down and rested. They are increasing her feeding quantities from 5mL every 4 hours to 10mL every 4 hours. The rest of her nutrition is still fed to her through her Broviac catheter. Slowly but surely. When she gets off the ventilator, they will try feedings using a nipple. We can't take Whitney home until we the parents are able to feed her.

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PS: We love reading everyone's comments!

6 comments:

  1. I hope she can be awake when I come to visit, but I'll take anything I can get. =D More than that, I hope you're able to feed her soon because that means the sooner she'll be able to come home and the sooner I can come see her any time! ...Well, reasonably anyway.

    Thank you so much, again, for keeping us updated! Thomas, you're a better writer/blogger than I think you've given yourself credit for, and I feel even closer to you as a sister reading what you share with us. Thank you.

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  2. I should add that I feel closer to Alicia as well when reading this blog. I love hearing her testimony (or your witness TO her amazing testimony), and you both have been quite inspiring throughout this whole ordeal.

    Again, thank you.

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  3. WOW - I am so inspired and uplifted by your post.. I have been praying for Whitney daily and am sooo overjoyed at the progress she has made. God is amazing!

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  4. What amazing progress your precious miracle is making!! She is so beautiful and so blessed to have two wonderful parents, loving her and cherishing every moment with her. Stay strong warrior princess and keeping making progress...you are on the road to healing baby girl.

    Praying for Whitney and your family!
    Tracy, Ian's mom from CHERUBS

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  5. We are so happy for you guys we pray for all of you every day several times a day. I hope it doesn't upset you but the girls started praying for her out loud at school during lunch and so the other children asked about her so now they are praying for you all too. Literally if there is anything you all need done let us know.
    We are here for you.
    Love,
    The Chandlers

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  6. Allison,

    I love to hear about all the things your girls are doing for whitney. It means so much to me. I love them for that and I don't even know them! My mom said that Victoria said that she wanted to BE Whitney so that Whitney didn't have to go through this pain. So sweet of her. Somehow I want to capture all of that and remember it.

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