Sunday, October 5, 2008

Princess Jersey

It all began with my regular 18 week ultrasound. The sonographer couldn't get the necessary measurements because of the baby's position, so 4 weeks later I had a second ultrasound. During this ultrasound she spent an awful lot of time focused on the heart. I asked if she typically spent that amount of time, her reply was yes. After that ultrasound I saw Dr. Huish and he said they would like to refer me to a pediatric cardiologist for an echocardiogram (echo) and an electrocardiogram (EKG) due to an "abnormal cardiac axis". Four weeks later (Sept. 25) I had these tests done.

We entered full of smiles and a little anxious, but in good spirits. Why have stress when this is just a precaution and our baby is perfectly healthy? After an hour and a half echo and listening to the doctor and sonographer discuss between themselves, all the while displaying furrowed eyebrows and head shaking, we were ushered into an exam room for the news. The first words out of his mouth were "Your baby will need surgery". WHAT! I thought we were just being cautious?!?! Not so. There were several findings: baby doesn't have a pulmonary valve (the valve on the right side of the heart that allows de-oxygenated blood to pass through to the pulmonary arteries) , because of this the right ventricle is dialated (enlarged) making it incompetent. Because of the absent pulmonary valve and dialated right ventricle, the blood is forcing the pulmonary arteries to enlarge. The dialated pulmonary arteries may be resting on the babies airway, making it difficult to breath or allow the lungs to fully inflate. He also noted, but was uncertain, of a hole between the left and right ventricles (ventricular septal defect or VSD) . He gave us a name for the said conditions and discussed treatment. Open heart surgery very soon after birth and then again down the road as baby grows. We walked out of there with heavy hearts and tearing eyes. Not our sweet baby!

The next day, Friday, Dr. Huish asked to see me. He explained that I'm a high risk patient and he will no longer be delivering me and that we did nothing to cause baby's heart condition. I asked if he would please do a quick ultrasound so we could find out the sex. I previously didn't care at all what we had, either way we won, but suddenly I was desperate to know! His sonographer was such a dear, she took me into her room, gave me a huge hug and quickly found what I was dying to know, IT'S A GIRL! The tears began...again! Yea it's a girl, we love girls! Bows, bracelets, pink, pink, pink!

The next Wednesday I saw Dr. Huish again for blood work and Thursday we met with the perinatalogist (high risk OB). I had a 2 1/2 hour level 2 ultrasound done as well as an amniocentisis, which hurt so much more than I anticipated! Friday we met again with a sonographer, perinatalogist, and a radiologist to learn the fate of our girlie. After another 45 min. ultrasound we were sat in Dr. Ponkey's office (our perinatalogist). She confirmed everything the pediatric cardiologist had said: she has a severe and rare congenital heart defect called Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. Also, her heart lays at a 90 degree angle rather than 45 degrees, but found no physical reason why which means it's just how her body formed. We also got the preliminary results back from the amnio, she tested negative for trisome 13, 18, and 21. There is still a chance there are chromosomal defects and we'll learn later this week if there are issues. The doctors are optimistic it's only her heart as she is measuring in the 60th percentile, above average. All things considering, we feel rather optimistic.

At birth, and they let me go full term, they'll determine how soon she'll need her surgery. Ideally they'll send her home to gain weight and get stronger for her surgery and then a couple months later do it. OR if she's having a difficult time breathing, or if the heart requires immediate surgery, they'll do it before she is sent home. That means there's a small chance we can have her home for Christmas!!

My doctor appointments have been crazy! I had 3 last week, 1 this week, and 3 next week. When I hit 32 weeks I'll have at least 2 appointments a week as she'll have to be very closely monitored. They'll do ultrasounds at every appointment as well as other tests. There's the pediatric cardiologist, perinatologist, regular ob, surgeons, and NICU appointments filling up our already busy weeks. Her little heart can be patched and she should be able to be a normal little princess. She will have to have additional surgeries as her body grows and we'll deal with that when it happens. In the meantime, we can't wait to have her in our family no matter what is wrong with her little body. We are thankful for the priesthood, faith and prayers. We know Heavenly Father sees the bigger picture and we pray that picture has her on earth for a very long time!

32 comments:

DaNelle & Kevin said...

I've always heard the 3rd one's that hardest but gosh Heidi! HOpefully everything will turn out okay. Make a huge headband bow and stick it on her pretty little head the minute she's born!

mom/sandy said...

Hi Heidi its Sandy Williams. WOW lots of medical terms that I don't understand. You did a great job of explaining its just me that had a hard time following.

Your little family will be in my prayers. If your in the neighborhood please stop by for a HUG.

Love ya.

Morris Mama said...

Can't wait to meet your sweet baby! Hugs and prayers for you all!

PamJorg said...

We're saying prayers for you and your family. Can't wait to see your little diva girl.

Shanen said...

Heidi I am so glad things are looking up. You at least have some answers now, and something to hold onto. All these doctors will take such great care of this little girl. You know you are loved. Remember to call when you need help with T & T. Anytime. We are still thinking about ya, and praying for your family. Keep me updated as the test results keep coming in.

Jen H. said...

I haven't checked-in in a while and first congrats on a Girl!!! I'm sorry all that you guys have been going through. I feel so bad I had no idea. Please let me know if you need anything. I know how hard it is having to go to 2 and 3 doctors appointments a week so call me any time to watch your kiddos!! Thinking and praying for you guys!!!

~Cari said...

I'm having de ja vu. The feelings you are having are the same ones I had exactly one year ago- fear, excitement, eagerness, hope, sadness, happiness, ect ect ect. Such mixed emotions, huh? Biggest advice I could give is leave it all in Heavenly Father's hands. Praying for you and your little one. Love ya Sista!

Crystal said...

Yea for doctors! (even though I don't like going) and Yea for maybe home for Christmas! But even if you're in the hospital, there will still be Christmas, it'll just be a "white" one in that sterile building. :)

Heather said...

Heidi & Chris,

We are thinking of you and know that all will be well according to Heavenly Father's Plan. That doesn't make it any easier but have faith.

Jamie Hammond Photography said...

you're in our prayers! i'll see you in december if it works for you guys!

Tanner, Avery, Benson, and Bela said...

I feel like I'm reading a post of my own from just a few months ago... I comptletley understand everything you're going through...all the emotions, all the appointments, all the ups and downs. It seems like at first you're either at an apt, online researching, or on the phone with doctors and such.. I'm so glad that everything has been positive so far, and her little heart can be fixed.

Can't wait to hear how your apt. with St. Joe's went today. You will get sooo sick of echo's and people telling you over and over again what is wrong, but that's how it goes. The more you hear, the better you understand I guess.

We'll talk to you soon. We're here for you every step of the way...

WishTrish said...

Oh, Heidi~ I know all of these feelings. We are praying for you, and we won't stop until your little princess is home and strong. {{{hugs}}}

pink, pink, pink, pink, pink, pink...

bunch of 'brooks said...

Hey Heidi! I just heard the news. Let me know as a friend (and visiting teacher) if there is ANYTHING you need. I am more than willing to have your kids over during your apointments. Makell would love to have Tatum to play with! Our family will pray for your baby. Hope everything goes well; take care.

Mandi said...

Oh my gosh Heidi. My heart is aching for what you must be going through. Life has some hard times in it and I am praying that your hard times end after your sweet little Jersey has her surgery and gets everything fixed up. Thank heavens we have a loving Heavenly Father who can make miracles happen in our lives. She is a little miracle girl. Please let me know what I can do for you. I love her name by the way! She is a sweet little princess.

Kristin said...

Of course the tears are flowing...You have the best attitude! I know that Heavenly Father will take care of her. I am amazed at how many doctors this little girl already has. She is so lucky to be coming to a home and family full of love that is willing to do whatever necessary to get her here and keep her here. I'm here whenever you need anything, even if it's just a craft day:) Call me anytime, add me to your 'list' let me help where I can, You'd do the same for me. You are amazing. Keep smiling. p.s. I'm so glad that it's Jersey!

Nichols Family said...

Thanks for the update Heidi. Prayers, hugs, etc etc from us! She's going to be adorable, of course. Call me for any reason and to help out.

Jamie Young said...

Oh wow, Heidi, I'm so sorry! What a scary thing to go through. I'm so glad you've got such great doctors that are staying on top of everything and sounding so optomisitc. I'm glad you're able to find comfort too. Thanks for sharing her story, we'll continue to keep you guys in our prayers!

tcandland said...

I'm sorry to hear about your sweet baby girl. We are praying for you- I even have Talmage mentioning it in his (although not quite understandable!)

Chelsea said...

Heidi, I'm sorry! no fun at all, but it sounds like it will have a happy ending. Please please please let me help you with T & T during some of your appts. Kosty would love to play with Tucker, and I would love to play with Tatum ;)

The Smith's said...

Hope everything goes ok. Let me know if you need any help with your other kids.

R & K + 2 said...

I love love love the name Jersey. A special name for a special little girl. I really feel for you with all of the things that are going on, you have such a great additude though considering. Hang in there. Love ya!

Hess Fam said...

Prayers from California for you and your sweet baby girl!
love,
megan

Maren said...

chris called last night and said you had a 10 page post. sheesh, lots of terms and information! im glad things are going as good as can be expected. i know you have lots of family in town and friends close by but i would love to help in any way i can....with kids, cleaning, meals, whatever. i will call you in a week or two after things have settled down a bit, is that possible?

jill said...

I love how closely the Dr.'s are watching you two! Just go in everyday so they can make sure nothing gets past them please :) Thanks for all the info, we are thinking of all of you. I can't wait to see little Jersey at Christmas!!!

The Kemptons said...

Heidi, who are such a strong woman it amazes me. With all that you are doing you call to check on me. What a great friend and person you are. You will be blessed for all that you do for others. Thanks for always being so happy and a great example.

The Kemptons said...

Is Jersey the name? I know you have discussed it with me before.

Vonda said...

Love the name Jersey! She will be fine and I know this has to be stressful for you, so know that everyone will keep you and baby Jersey in our prayers - Love your family!

Wendy and Rick said...

You are in my thoughts I am sure baby girl is gonna be just perfect when she comes. Know that I am thinking about you and her. Hang in there.

Clay & Jewelia Eagar said...

I love girls too :) can i do anything for you? watch your kids while you run to doctor appointments? bring you dinner? i'm a stay at home mom now, i can do these things now! call me for anything...

snydersinc. said...

Oh, Heidi, my eyes are filled with tears right now. I feel like such a bad neighbor for not knowing this. Our prayers and thoughts are with you at this time. You are so strong, and keeping in such good spirits. Pllllleeease let me do something for you to help you out, you have so many doctor's apppointments, there's got to be something I can do for you. Obviously the Lord knows how strong you are. Thank heavens you are staying close to the Lord, as you know, this will be the only way to get through this, and you will.
Penny

MommyRohner said...

Please call me to watch t and t during apppointments or for ANYTHING.
I want to help in any way that I can.

Rhonda Cook said...

We want you to know that we fasted for you on Sun. I know that what ever happens, the Lord is in it. You know we love you guys so much and will continue to pray for you and sweet Princess Jersey! Rhonda Cook