Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Saturday, June 26, 2010

Thomas's experience so far

This is Thomas writing. Alicia has been begging for me to write in the blog ever since it was created. To tell the truth, I've been wanting to write in the blog for a long time now but I've been so busy and overwhelmed by work and school. I work 40 hours a week, Monday through Friday, 8am to 5pm. On Mondays and Wednesdays I go straight from work to school, where I'm at from 6pm to sometimes 10pm. When I get home, I try and spend precious time with Alicia and Whitney (if Alicia hasn't already gone to bed), but then many times I have to get right on the computer and do homework. In addition to my Monday and Wednesday class schedule, I also am taking an online course which also takes up a lot of my time. Because these are condensed summer classes, I'm often given some tough assignments to complete over the weekends. So in a nutshell, I'm very busy, many late nights, and not a whole lot of free time.

Just a couple days ago I was up until 5am doing homework, which is an unfortunate record for me because I had to get up at 7:30 to go to work that same morning. In the past, the latest I've ever stayed up doing homework was 4am. Last night I think I crashed (fell asleep) before 10pm and I woke up this morning around 8am. They say that you can't recover week's worth of lost sleep by sleeping in on the weekends, but I would have to disagree. I feel great this morning after 10 hours of sleep!

Ever since the pregnancy, Alicia and I have probably gone out to eat at least 5 times a week. It's a strange phenomenon that's occurred. Before we used to be strict on out eat-out budget, but Alicia just isn't up to making dinner ever since she got "morning sickness" (which has long since gone away). So we eat out, a lot. And when we don't eat out, we get a hearty meal from Alicia's mom. I'm not used to eating this much. I think I've gained 10 pounds since the beginning of this year, and almost none of my pants fit me anymore. I don't button my pants any more, and on some of my pants I have to lock the zipper down half way so that I can breathe. I have to wear my shirt un-tucked so nobody can see it. :-) I don't want to accept the fact that I'm gaining a little weight. I've been 130 pounds for the past 10 years and I like that weight. For some reason I just hate clothes shopping. I love shopping for everything else but clothes.

Going to as many doctor appointments with Alicia seems to help a lot with coping with this pregnancy. Alicia has expressed to me that she really appreciates it when I come, and I like being in the loop regarding what the doctors have to say. And it was really important that I was there on those not-so-fun doctor visits, especially on the days when they discovered the abnormalities. I'm glad Alicia didn't have to be alone on those days.

As Alicia mentioned earlier, we had different ways of coping with the knowledge of Whitney's condition, and that difference did cause for several weeks a little disharmony between us. When the doctors diagnosed and monitored the CDH condition, they pretty much told us in as much of a nice way as they knew how that we shouldn't be surprised if Whitney doesn't survive after birth. They told us that CDH in any form can be life threatening, but that Whitney's conditions is on the more severe end of the spectrum and that they'd be pleased if she survived more than a couple days after birth. Maybe I trust doctors too much, but I took this as a sign that we needed to start planning for the funeral now. However, as the days and weeks progressed, Alicia kept buying more baby stuff and asking me what kind of crib I thought would look nice in the bedroom and kept planning as though nothing was wrong. I asked Alicia why we were getting all this stuff if we knew Whitney probably wasn't going to survive. Every time I mentioned something to that effect, Alicia would get upset with me until she finally let me know how she felt. She was surprised that I had so little hope that things could possibly turn out okay, that if we just had enough faith in God that maybe a miracle could happen. I was surprised and didn't know she felt this way. That's when we actually started talking about it a lot more openly with each other. We knew that however we handled this situation, we needed to do it united together. We agreed to be united and do it her way. :-) We agreed that we are going to do everything possible to give Whitney a chance to live, which includes doing whatever is needed to stabilize Whitney after birth so that she can have surgery. We agreed that we are going to continue to exercise faith that if God desires it, he will perform a miracle with Whitney to let her live, or that if God needs Whitney in heaven then he will let her come down to earth long enough to receive a body before taking her up again into His holy presence.

At first I thought I needed to have faith that Whitney could survive in order to induce a miracle, but then realized that I actually just needed to have faith in God that his will be done, because maybe what I want isn't what God has planned in his eternal perspective. Our bishop has counseled us in this manner, and his counsel brings me peace and assurance.

So now that Alicia and I are on the same page again, happy and harmonious, we readdressed the whole issue about buying all this baby stuff while not knowing what the future holds. We agreed that we would still get some of the basic things just in case (like a car seat for example), and that whatever we get will be neutral in color and usable for future pregnancies. Expensive things like cribs and furniture we are going to hold off on until we have a better idea of what the future holds. Alicia is right when she says that this is a huge trial. Despite the fact that we have a contingency plan for both outcomes, it's still not easy, but it's not unbearable.


  1. Our prayers continue to be for Whitney's health, development, strength, and competent medical support (actually for all of you, in your individual set of needs), as well as God's grace and will to prevail. I really appreciate your candid remarks that help us feel so at one with you both. We love you!

  2. You guys are both so strong. Its good to be united and there for each other. Bringing a child into this life is hard enough without all the complications...stay united, Whitney needs you both! Matthew has always been my rock and I'm so glad your there for Alicia! Alicia you are doing wonderful. I'm grateful you are keeping your blog and updating it. Not a day goes by that I don't think about you guys! Baby Whitney is lucky to have you both. Have faith in our Heavenly Father that He will take care of her and you guys and He will. You guys are always in our prayers! I can't wait to see pictures of sweet baby Whitney! If you need anything please don't hesitate to ask, we would be honored to help! ((Hugs)) Rachel Starchman and Family

  3. Thank you so much for joining us in prayer for our Finley. I am celebrating in your victories for Whitney and praising God for how far she has come. I started to cry when I read that she is breathing on her own. I have been inspired by both your and Alicia's faith throughout your journey as well. I will continue to keep Whitney in our prayers.