Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Monday, May 31, 2010

Starting from the Begining

Dear Family and friends,

This blog is to keep everyone updated on our daughters condition with better details and maybe even to get to know us a little better. We are very grateful for our baby and love her very much. Please keep us in your prayers.

Love, Thomas & Alicia Montgomery


October 11, 2009 ~Alicia's first day of LMP (Last Menstrual Period)

November 14 2009 ~ Positive (Over the Counter) Pregnancy Test #1

November 16, 2009 ~ Postive (Over the Counter) Pregnancy Test #2 (Celebrate!)

December 10, 2009 ~ First Ob/Gyn visit to confirm with ultrasound (Dr. E.)

Around Thanksgiving of 2009 I started to feel sick. Then threw up every night after I got home from work for about 2 or 3 months! I started to feel pretty good in Febuary.

March 10, 2010 WEEK 21 ~ It's a GIRL! I shared the wonderful and emotional moment with my husband Thomas, my Mom, and my Mother-in-law.

After the Anatomy Ultrasound, Dr. E. told Thomas and I that they see a chest mass/bright spot on her left lung. They also said that her nasal bone is missing/absent which doesn't mean anything, just that she may be at a higher risk having of a chromosomal abnormality. (We opted NO for the Amniocentesis). They diagnosed it as Congenital Cystic Adnomatoid Malformation (CCAM), and referred us to a Perinatologist (Dr. J.). He confirmed the diagnosis and told us all about it.

We let all my family members know this via an email my mom typed up for us. They are all praying for us and we really appreciate it!

A month later, WEEK 25, we went back to the Perinatologist and saw Dr. H. this time. They said there is some fluid around the CCAM and that her heart is pushed to the left of her chest. So they refered us to the St. Joe's Hospital Congential Heart Center to perform an Echocardiogram. They said her heart looks great and want to follow up in a month! (End of May 2010).

April 18, 2010 WEEK 27 ~ Thomas and I have pretty much decided on our baby girl's name. Whitney Ka'imilani. Whitney meaning 'from a white place/island.' Ka'imilani meaning 'one seeking heaven.' Also we are officially moved into My parents house!

April 29, 2010 WEEK 28 ~ Same Perinatologist Office, this time saw Dr. P., new diagnosis.

They did an ultrasound and keep saying that everything looked normal... and fine... and the CCAM is about the same size...Then the sonographer/ultrasound tech. got very quiet for a long time...again, so this time we realize something else was wrong and the only thing I remember thinking is "that's okay just as long as it's not life threatening". The Tech just said that she see's something else in my baby's chest and that she is going to get the other Tech for a 'second opinion.' She agreed with the first Tech and told us that the Dr. wants to talk to us and he'll be here in 40 minutes. I was starving so we left to find food (had no time for Breakfast) and found a Jack in the Box. Just wondering what was wrong the whole time! We went back and Dr. P. did the ultrasound to 'see for himself.' Thinking outloud, Dr. P. didn't think that the CCAM was big enough to displace her heart so much and that he see's other organs in the chest that belong in the abdomen.

Congenital Diaphragmatic Hernia (CDH) ~ Dr. P. explained it very well to us. I couldn't stop crying and didn't go into work that day. I just cried myself to sleep that day. Same with my husband. I mean...we just learned that this IS life threatening!

We let all my family members know about the CDH and asked them to Fast and Pray for us and our daughter. Thank you so much, we CAN feel your prayers.

May 3, 2010 WEEK 29 ~ MRI at St. Joe's Hospital

So after one is diagnosed with CDH, they need an MRI to get specific details because every case is different. That monday morning I went into work for about 30 mins. to get everything set up for the first two patients and to sterlize instruments. Then my mom and my sister Jessica picked me up and we drove to St. Joe's, which is only like 2 mins. from where I work. I had a horrible experience in that MRI machine! Just not fun at all!

May 8, 2010 WEEK 29 ~ Baby Shower! SO FUN! Thanks to My mom, my 2 sister's, Mother in law, sister in law, and all those who helped and provided so much!

The day before my Baby Shower I went to work (Friday is only 8am-12pm), did a bunch of errands with my dad then got home. And then, for the first time since I've been pregnant, I went and got a pedicure and a manicure! Plus got my haircut and styled! Plus bought a new outfit! Looking and Feeling great!

May 6, 2010 ~ Ultrasound/ Bio Physical Profile (BPP) and Non Stress Test (NST) with Dr. E.

Babies are suppose to get 8/8 on the BPP which includes Movment, Tone, Fluid Measurement, and Respitory. You either get a 2 or a 0 score. Baby Whitney got a 0 on the respitory part of her BPP and two's on everything else. So then they did an NST. She didn't do it then either but they said that's okay because she's 'young' and want to do it again on Monday. So I had to take Monday morning off and see Dr. E. again for the same thing. Baby Whitney did it this time! Yay!

MY pregnancy is going very well physically. No complaints really! Just growing bigger and bigger everyday! Heartburn...terrible! My husband went out late one night for me got me supply of Tums & Rolaids & some liquid form! Life saver! Sleeping is sometimes uncomfortable. But other than that all I came seem to think about is my daughter! All day and night...wondering if she will live and about how much she will have to go threw to live. Haven't really had time to think/plan about child birth, you know, the actual labor and delivery!

May 13, 2010 WEEK 30 ~ MRI Results and Ultrasound

Thomas and I went to Dr. E.'s in the morning for and ultrasound and NST. They say there is slightly more than normal fluid. I went into work for one patient. Then Thomas and I went to Dr. P's for another ultrasound (they say her fluid is fine) and the MRI results. There is a defect in the posterior lateral aspect to the RIGHT hemidiaphragm. Herniation of her bowel and liver into the RIGHT chest. Her RIGHT lung is markedly hypoplastic. The LEFT lung is moderately hypoplastic and shifted to the LEFT. The Heart is entirely on the LEFT.

Basically the reality of our baby's future is starting to sink in. I'm not going into to much detail here about CDH and urge you to just google it. Her situation is pretty bad though.

WEEK 31~ Luckily my sister Brianna is home from college for the summer and is working at the dental office with me!

They transfered our care to St. Joe's Hospital. To see thier Perinatologist and all the specialist who will take care of us. So no more Dr. E. or Dr. J. or Dr. H. or Dr. P. We are now in the hands of Dr. G! Okay, seriously, way to many Dr.'s, especially for my first pregnancy! I don't think this is how it is suppose to be! But don't worry, I/we will keep up with all the appointments and stay well informed about my/our daughters condition. We are always praying for her, too. We are really sad and scared, especially about all the unknowns.

May 17, 2010 WEEK 31 ~ First visit with Dr. G. They don't give us numbers or statistics about our baby. All he can tell us is that he is really concerned about the severity of our daughters condition and that he thinks her prognosis is poor! Not good news at all!

Dr. G. recommends that we do get the amniocentesis done before Whitney is born. It will tell us if she has a chromosomal abnormality...Trisomy 13 or Trisomy 18 is 'not compatible with life.' So we decided to do that later in the pregnancy. He also wants me to get Steriod shots! Ouch! That is suppose to help baby's lungs grow. Lots of needles but I am willing to do anything to save my baby!!

This week I was finally, emotionally, able to tell my coworkers that my baby is not healthy. I'm glad I did. Thomas had to tell his boss already so that he could take off the time he needs to.

May 20, 2010 WEEK 31 ~ Neonatologist & NICU tour

Thomas and I saw Dr. G. again for an ultrasound... everything looks the same. Then they took us down to the hospital to talk with a Neonatologist. She just explained all about CDH and seemed well informed. She told us all about the diffenent levels of options to stablize baby before her surgery. If it's bad, she may need to go on ECMO (look it up please!). It's bascially a heart and lung bypass machine that has long term effects. Then she showed us the NICU, where right now there is only Premies in there. It was pretty eerie, I thought. Apperently we are the only ones in AZ that has CDH right now!

May 24, 2010 WEEK 32 ~ Ultrasound & Pediatric Surgeon

There are nine surgeons possible to be 'on call' the day our baby needs surgery. I don't know about that. The surgeon simply went over a power point about CDH and complications that can happen and variables during the procedure. All we know is that we are determined to do everything possible to save our daughter.

4 comments:

  1. We love you guys so much!!!!

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  2. We will keep you in our prayers. I will help in any way possible! I know you're surrounded by family though, we all love you!

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  3. Thankyou so much! We really appreciate it. Family is great but sometimes I just need a friend.

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  4. Alicia,
    You are in our prayers, for sure...as is baby Whitney. I love her name, by the way. I am sorry to hear that she is already experiencing the physical challenges of this mortal life. I am glad you have the support of your family...and I hope you know you have lots and lots of friends here for you too. I am far away physically, but you can always call me!
    602-326-0549
    healing hugs to you and yours.
    Kari Pike

    ReplyDelete