Earlier this week, I found out my friend had her baby. I called her at the hospital…everything went really well and the baby is miraculously healthy. She does have jaundice but that seems so minor compared to what they thought they might being dealing with (CDH) a few months ago.
Time has really flown by the last few weeks. Bryan and I are busy trying to unpack. We really like our new home. We also recently purchased my brother’s car. We have been a one-car family since last April. It will be nice to have a second vehicle for all of the extra doctor appointments and errands. Normally buying a house and a car would have seemed like such major events, but my entire focus right now is preparing for the arrival of the baby in the spring.
This coming week, I have two more doctor appointments. One is an ultrasound scheduled for Friday. The technician was nice at my last ultrasound. However, I decided to nickname the specialist who reads the ultrasounds “Dr. Doom.” I get so anxious with each ultrasound. I’m sure I’ll be a wreck next week.
On the 28th of December we toured the Neonatal Intensive Care Unit (NICU). I was hoping that the tour would somehow ease my anxieties. At least it gave me a more realistic picture of what we are facing in the spring. I imagined a room full of babies on incubators, but they have only one to two babies per room with nurses assigned to each baby. The neonatologist talked with us for a long time. It is strange how bits of a conversation can just stick with you in almost a haunting way. He kept emphasizing how babies with our condition are by far the sickest babies that they see in the NICU. The first week of life sounds so intense. He said the baby can be doing fine then he/she will unexpectedly take a turn for the worse. Just getting the baby breathing right after birth can be an incredible achievement. It sounds like there will be at least 5-10 people from the NICU in the delivery room with me in addition to the regular team of nurses and doctors. At least his comments regarding our pediatric surgeon were encouraging. I guess they don’t agree on everything, but he highly respects his surgical abilities. The neonatologist also recommends that I receive steroid shots to help the baby’s lungs develop before birth. Even though the baby should be full term, her lungs will be very premature. I nearly pass out getting blood drawn so I can just imagine how well I’ll do getting these shots. Did I forget to mention that the neonatologist was explaining how painful they can be? Of course, at this point I’m willing to do anything to improve our baby’s chance of survival.
Yesterday I spent some time with some girlfriends I know in the area. There are three of us that are pregnant right now. We ended up stopping at a shop that sells specialty cloth diapers. I couldn’t help but think that all I care about is that my baby can breathe when she is born. Then I hope she is strong enough to endure an intense surgery. And after 6 weeks of struggling between life and death in the NICU, I want to be able to bring her home to be a part of our family. I’m hoping that somehow in God’s divine plan for the universe there is room for two Mtn. Home girls to receive the same miracle in the same year, and if there isn’t, I’m hoping I will have the strength to get through the unimaginable grief. (I’m sure I’m not the only mother in the history of mankind to weep over their child.)
In November 2007, our unborn daughter was found to have a condition called Congenital Diaphragmatic Hernia (CDH), which occurs in 1 out of every 2,500 pregnancies. Basically, our daughter’s diaphragm had a hole in it that had allowed her stomach, liver, and some intestines to pass into the upper regions of her chest cavity. Her chest was too overcrowded to allow her lungs to fully develop. She was given slim odds to survive and worse odds to thrive.
Our daughter, Jillian Olivia, was born in the Spring of 2008. Since her birth, Jill had two surgeries during her first year and has since thrived.
We started this site to chronicle our experiences throughout this journey and to keep our family members and friends up-to-date on Jill's condition. Now we use this site to update others on what's going on in our lives.
6 comments:
We love you guys termendously and can not even begin to imagine how you are feeling. We know that our Father is a mircale worker and we trust He is in control with everything you are facing. We wish we could physicaly be there with you during this time but know our hearts ache for you and are praying faithfully.
You are all in my prayers. Please let me know if CHERUBS can do anything to help.
Dawn
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
I found your site from a random hit on mine that highlighted several CDH blogs I wasn't aware of...
Anyway, I wanted to send you a hug from a stranger who has been there and who can offer hope. My daughter is a 20 months old crazy toddler who also survived CDH. Feel free to contact me if you want to talk.
Jenn Miller
http://jennmillerblog.spaces.live.com
Know that I love you guys and I am praying.
We love you and miss you. We are consistent in praying for you daily and will keep you in our thoughts! This baby is going to be so blessed by you both! Meditate on the HOPE that God has given us.
hi judy & bryan, this is kim (derek p.'s sister). i just wanted to hopefully ease your fears about the steriod shots. i have been in and out of the hospital for preterm labor and have had 2 rounds of betamethizone steriod shots to help my baby's lungs develop. it isn't the most pleasant shot in the world but really, it's not that bad and it's over pretty quickly. your little one is in my prayers. take care, kim
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