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.

Tuesday, June 22, 2010

Almost There

June 22nd ~ WEEK 36~

We are so grateful for all the support and prayers of our family and friends. We are so grateful for our daughter, Whitney. We are so grateful to be living with my parents and for Thomas to have a job and be able to go to school. We are so grateful for our excellent DRs to be able to take care of us and our baby. We are so grateful that we know that Families Can Be Together Forever, and that ours is!

On Thursday the 17th I had the Non Stress Test done. They said I was having small, frequent contractions, but I couldn't feel them. They asked if my bladder was full and I'm like um.. I think so, yeah. LOL, other wise I would have gone to the hospital to be monitored! I didn't have to go went I got all strapped up to the monitor and can usually only tell when I stand up! So everything is good with the NST's

Thomas went to Daddy Boot Camp on Saturday the 19th. It's just a half day class where he got to talk to other new dads and veteran dads. He really enjoyed it and will hopefully add more to our blog about it if he ever gets a chance. Thomas is very busy with school right now, taking 2 classes 5 weeks long.

On Monday the 21st, we had an ultrasound done. That went well and there's not much to update. They do a Bio Physical Profile, which she passed quickly! Good Girl! That's a really good sign that she is 'practicing' breathing and her insides work. Dr. G looks at the ultrasound himself. He mentioned again that he doesn't think she has a CCAM and that it looks like her right lung (because it matches her left lung), just pushed forward because of the liver and intestines coming up behind them. Then they did my first exam! Everything looks and feels good! Then they had to draw my blood again. My inside elbow...does that have a name? was sore all day with a nice bruise. They don't have the Amnio test results back yet but think they'll know by my Thursday NST appt. But Thomas doesn't go to that so we'll know next Monday. I have mixed feelings about knowing the results. If she has a Chromosomal Abnormality or not. I want to know if she doesn't but don't want to know if she does at this point. When she was diagnosed with 'Just' a CCAM, I was perfectly fine if she has Down's Syndrome, but now that we know she has right sided Congenital Diaphragmatic Hernia (RCDH), that would be really bad news. Because 'those' babies don't survive.


Dr. G said he thinks I have a high pain tolerance. I said yeah, I think I do. Not that this exam was painful, just uncomfortable, which seems to be how I describe everything. But it's true, I always liked getting 'beat up' with sports or quading or wake boarding, and thought my battle scars, bruises and scratches were cool to show off! Haha! I can think of so many experiences! I've always considered myself tough, which now may help a lot during my labor and delivery!

I do believe we are going through this trial for a reason. Before this I had NO worries. I was happily married, had a great job, lived in a nice apartment, had awesome friends and family. Well, I do still have all those things but now this huge trial. It has made me very humble and prayerful, and to fully rely on God. I now have empathy for others. Before I never really understood other people's trial's and thought "suck it up" or they'll "get over it" I know now that that's terrible. I feel more understanding and empathy for others with any kind of trial. I know my husband has different feelings about how this has effected him. And it also effects Whitney and what she will go through when she's born. Personally, we are Praying that she will be healed. But also that God's will be done.

Tuesday, June 15, 2010

Echo Cardiogram

June 15th~ Today Thomas and I got up really early again for another Dr. appointment at St. Joe's. We saw DR. D. for the Echo Cardiogram Ultrasound. The ultrasound tech pushes kinda hard on me to view the heart and it's really uncomfortable, and it took like 30 mins. Then he did it again for a while until the Dr. came in. DR. D. looked at her heart too and said that everything looks great. I guess when they have a LEFT sided hernia the heart is pushed to the right and sometimes doesn't develop well. But in our case she has a RIGHT sided hernia, so that's better for the heart (but not the lungs). OH and they said her head is down! yay! I sure felt that last night! She was moving so much and it was really uncomfortable but I guess she was just turning around and down! I don't know why or how she decided to do it, I was just sitting at the computer. They said I don't need to come back to see them for anything else. When the baby is born though the will do and ultrasound on her to see her heart before surgery. So that's good. We forgot to get our parking ticket validated again and paid $1.50 Yesterday we paid $3 each, so dumb. Oh and our car got hit in the parking garage, just a little scratch and chipped paint, so mad! Thomas & I then went to the Park Central Deli and got a really good breakfast.

I'm glad that I'm letting everyone know about everything that's going on with our little family. Hope fully no one is left out. I just didn't want people to think everything is fine and then one day find out that we couldn't take our baby home. Plus it is really nice to have all the support and prayers. Only 41/2 more weeks at the most till I get to see my daughter and hold her hand.

Monday, June 14, 2010

Amniocentesis

WEEK 34~
Last week (June 7th -11th) was my Last week of work. We had a little party on Thursday (June 10th) for me with lots of fruit and veggies and cookies! YUM. Dad (the Dentist) & Brianna (sister) got me beautiful flowers! (FYI I love getting flowers!) Friday June 11th was my very last day, normally we work till 12pm but this day we worked in a big long procedure and didn't get home till 4PM.
I'm glad it was my last week because it's getting really hot outside and warm in the office, I'm getting too big to maneuver around easily & quickly, and of course I'm always eating and going to the bathroom! Luckily my youngest sister Brianna (19) was working with me (and she is really good) or we would be behind schedule all day! By the way I'm a Dental Assistant!

Thomas is still going to a Business Ethics class on Monday and Wednesday nights after work, and he's working full time while trying to keep up with me and all these Dr. appointments. He is such a hard worker and so supportive and loves to feel baby Whitney move!

June 7th= Ultrasound & BPP of baby Whitney. She is doing well and so am I.
June 10th= NST for baby Whitney. She is not in stress when I have a contraction,which I cannot feel yet so that's a good thing.


WEEK 35~
Today Thomas and I drove down to the Hospital around 7AM for our 8AM appointment, which took us about 45 mins. to get there. Parked in the garage and went to the 8th floor. Today the ultrasound tech did a Bio Physical Profile and measured the baby. She weighs 5lbs 6oz. How fun. Oh yeah, and she's now in a breech position...not cool Whitney, hehe. She has always been head down but just recently her head has been pushing into my right rib cage! I really hope she turns around and down. I do not want a C-section. Anyway they said her insides are the same and that what was at first diagnosed as a CCAM is still a mystery to DR. G. It could be a CCAM or it could be compressed right lung (he can't see any other lung). They won't know for sure till they see it during surgery. They gave us a couple of cute pictures of Whitney. I have a ton of ultrasound pictures of my daughter and am going to make a scrapbook out of them. It's the only good thing about getting this done every week! I bet most mom's don't get this many pictures. Then I gave a urine sample, took my blood pressure, and DR. G. asked me if I wanted to do the Amniocentesis test today. Remember this is to see if the baby has any chromosomal abnormalities. We decided Yes. So he sent us with some papers over to the OB Triage, the same place that gave me the steroid shots. They admitted me and made me put on the Hospital cover gown thingy. A nurse monitored the baby (NST) for a while. Then my DR. G., an assistant, and an ultrasound tech all came in. Got everything ready. Meanwhile, I'm really scared that it will hurt me and the baby. They warned that if the baby was is stress I would have her today...via emergency C-section... (Thank goodness we are fine!). So they told me to keep my arms above my head, Thomas was there to hold my hands. They rubbed my belly with Iodine and found a spot away from the baby with lots of fluid which was about 2 inches above my belly button and 1 inch to my left. STICK! It did hurt, but was not unbearable. (I didn't even flinch). I think they took 3 different syringe fulls! of amniotic fluid. It was clear color. It seemed like a lot and felt like a long time, to me anyway. Then they just pulled out what we then realized was a super long needle (see my battle wound -->), put a band aid on, and strapped me to the monitor again to make sure we were doing okay. Thomas and I watched some t.v. and talked a lot about different things. We were there for another hour and a half! Crazy. When I got home I ate and took a 2 hour nap!

Tomorrow I have an Echo cardiogram scheduled and Thursday is the NST and Saturday is Daddy Boot Camp for Thomas (it's just a short class for new dad's to learn about newborns).

I'm making a Hospital Bag Checklist. Getting ideas from lots of different websites and so far I have written down 3 whole pages! My printer doesn't really work so yes, I hand wrote my list. I like writing, I'd rather write in my journal than blog (type). We need to do a tour of the hospital's Labor and Delivery (even though I've seen everything) so I'll bring my list and see whats really necessary to bring.

I fed all of my parent's turtles today since they are out of town again. 3 baby tortoises inside, 4 toddler tortoise inside, 12 big-kid tortoises in a new outside habitat that Dad made, 3 'parent' desert tortoises, and 2 big African Spur turtles. WOW.

Monday, June 7, 2010

Simple Update

May 31st 2010 WEEK 33 ~ Steroids

On Tuesday Thomas and I went to the Dr.'s appt for an ultrasound. Dr. G. sad things look the same. He's very concerned for our baby and we made sure everyone knows that we want to do every thing we can to help her live. Then they told me to go to the OB Triage for my Steroid shot. The medicine is for fetal lung maturity, it is given to mothers at risk of preterm labor to help the baby make surfactant. They gave it to us to give her every chance of help. (Pray we don't go into Preterm labor). The shot wasn't too bad... she put it more in my hip than cheek which left a nice bruise. Other wise No side effects for me.

The next day, Wednesday, June 2, I went in, by myself, for the second dose (24 hrs. later). This nurse put the shot more in my cheek and it hardly left a mark!! (Note to self). They won't really be able to tell if it's helping.

On Friday, June 4, I went back to the perinatologist office for my weekly Non Stress Test. They strapped me up for a while and finally got good results. My baby girl is very active! I just love seeing her on the ultrasound too! I still don't like be covered in that goo for everything everytime! After my appointment (which will always be at St. Joe's), my sister Brianna and I got pedicures! I'm glad she's here! Later that night my whole family went over to my other sister, Jesssica's new house!

On Saturday, June 5, Thomas and I went to the Prepared Childbirth Class! Yay, finally a day to think about the actual labor and delivery of my baby (because that is one thing sure to happen). We chose the ALL DAY Saturday class held near St. Joe's Hospital. There were a lot of people in our class and we learned a ton of useful stuff and had fun too! It's nice to think about our baby being healthy but I know I also have to face reality. She does have a life-threatening defect, and I know it's hard for everyone.