Wednesday, June 24, 2009

Our Little Brennan

It's been a long day. I normally wouldn't post this but Janalee and I need all the prayers we can get at this point for Brennan (that's the name we chose for our baby due in October). It's a long story so I'll make it as brief as possible. When Janalee and I went in for the first ultrasound to check everything out the doctors noticed he had a very large stomach. We went back in a couple times and it the stomach was still large. We were told it could be something wrong with the digestive system that could be caused by Down Syndrome.

A couple weeks later we were directed to see an awesome Neonatologist at Utah Valley Hospital, Dr. Gainer. She checked out the stomach and found nothing wrong, the blood tests were good, so no Down Syndrome. Janalee and I were relieved until Dr. Gainer noticed something was wrong with the heart. Crazy huh? We go in for a stomach problem and go out with a heart problem. At this point Janalee was on an emotional rollercoaster, first we're worried about D/S now we have a potentially life threatening heart problem. Dr. Gainer referred us to a pediatric cardiologist at Primary Childrens Hospital for a pediatric echocardiogram(big word for better ultrasound). Dr. Pinto, the very good pediatric cardiologist, took a long look at Brennan's heart.

Brennan has Double Outlet Right Ventricle with Normally Related Great Arteries & Pulmonary Stenosis & Ventrical Septal Defect. All 3 problems are commonly found together. It would take forever to explain what that is so you might have to google it. However, here's a digram to show it:


I couldn't find an exact digram of the problem the but one labeled Tretalogy of Fallot is close enough. Basically there is a hole in his Left Ventricle, his Aorta is shifted toward the middle of the heart right over the hole(which actually helps us out a little). What the Digram doesn't show is a shrunken or very tight PA(pulmonary artery). The end result is our little guy won't get enough oxygen to his body without eventual surgery.

The Good News? This can be treated....with a very high success right(I believe over 90%).

The Bad News? We have to deliver at U of U so he can be rushed right over to Primary's. After that we'll see how soon he has to have surgery. Within the first 6 months of Brennan's life it's likely he'll have had 2 open heart surgeries. The first one would be a shunt from the aorta to the pulmonary artery to give him a bit more oxygen. We won't know if he'll need this one until he's born, just depends how small his pulmonary artery is. The for sure surgery he'll have to have is one that seals the hole, moves the aorta to the right place, and opens up the pulmonary some more(major surgery).

The outlook is good. Out of all the heart defects out there this is one of the better ones. Primaries is one of the best places to be to treat this and I have full confidence in our doctors.

Thanks for all your prayers, fasting and support. A special thanks to Jamie Gillman, she's been a big help to Janalee. She's been through all of this and much more.

26 comments:

Brand N' Kys said...

Wow! That is a lot to swallow. I feel for you two. In a MUCH smaller scale I know what it is like to hear all this. I know that no matter how positive the outcome all you feel is scared because it's your baby and you want to keep him safe! You are in our prayers! Little Brennan, I am sure, is a strong little guy who has such a amazing mission ahead of him. Good luck to your family!

The Johnson's said...

Janalee and family, know that I am thinking about you and what you are going through. It can not be easy and I know that for sure. Your hubby is right and you are going to the best of the best up in SLC so remember they will take really good care of you and the baby. Our prayers are with you at this time.

Jill said...

I can't say I understand and I'm sure what I imagine your feelings are aren't even close to reality, but I'm still thinking of you and included your family in my prayers last night.

I've always admired your happiness and fun-loving spirit. I'm sure that your contagious personality will help carry your family through this trial.

The staff at primary's is incredible. God is all-knowing. You, little Brennan, and your family are all in good hands.

Jeff and Ari said...

We'll keep you guys in our prayers!

Heather said...

My thoughts and prayers go out to you guys! All I can say is wow....but I have complete faith in Primary Childrens Hospital, they have done wonders with my Daniel and I know they will take such good care of Brennan! If you need anything PLEASE let me know!

Tony and Jessica Bergstrom said...

Tony and I are praying for you. I can't imagine what you two are going through right now. Let me know if I can help you in any way. Love you guys.

Colby-Paige Hargis said...

It's so hard to find the words to say, I know we only keep in touch through our blogs but you are still a very important friend to me and we wil lalways keep you in our thoughts and prayers. For a while Colby and I thought our baby was going to need surgery, I tested positive for spina bifida and for a few weeks we were a mess. I didn't care that my baby was going to be disabled, I just didn't want her to go through the pain of surgery. So I kinda know how you are feeling. But we had a level 2 ultrasound to look at her and she is fine, but they think she has a sixth toe, haha. We said, We'll take it! That is fixable! I can't tell you how grateful I am for Primary's either, They saved my nieces life over and over. She has a heart defect really similar to your baby and she has had six surgery's. She is 12 years old now and strong. I hope the number six doesn't freak you, some were cause of infection. But you guys are awesome parents, and I just wanted you to know we are thinking about you and to keep everyone updated!

joker said...

You know how much we love you both, and baby Brennen and you and Janalee are always in our prayers.
Love YA!
Jamie

Jamie said...

I get emotional just reading this. It's all too familiar. You both are really strong. Just remember that is ONE of the many reasons why Brennan chose you both. I know you'll get through this, and when you do you'll be amazed at how much you've grown and the greater love you'll have for this perfect little baby. Still praying for you! Love you both.

kristi said...

Oh my gosh!! We are thinking about you and praying for you. I know that everything will go well for you guys. Let me know if there is anything we can do!!

Jenny Bebel said...

We will keep you all in our prayers. Let us know if there is anything we can do! WE love and miss you guys.

Teejay, Laurie and James said...

Your family is in our prayers!

Cottam Family said...

Janalee! I just saw your blog. I've been away at girls camp. You guys will definitly be in our prayers. I love you guys so much and I hope that everything works out and gets better for your little guy. If you ever need a friend to talk to or vent to I'll always be a phone call away.

Katie said...

Janalee, I hope everything goes okay. Know that you and your family will be in our prayers.

Amy said...

Oh my gosh, that was really hard to read. We will definately be praying for you and your little guy. Miracles do happen, so keep your head up. My husband was going to be born with Spina Bifida, but through the fasting and prayers of the people around, the hole in his back sealed up and he is fine. Now all he has is a little bellybutton looking thing in his back to remind us of those miracles. Just know that you will be in our prayers also!

Chablis said...

We sure love you guys, and we pray for you every night! I just know everything will end up okay-though I know it won't be an easy road. You two are tough and faithful and you have so many friends and family supporting you. *hugs*

NatRat said...

You guys have been through the ringer...I am so sorry. The good thing is that you do have Primary and they are awesome!! We have never had a bad experience with Bode there. Not that he had to have heart surgery, but we have been there a number of times and they know what they are doing. You will be in good hands. Things like this only make you stronger parents....it will all workout and your little Brennan will be one tough kid. You will be in our prayers. P.S....love the name!

Jessy and Kurt Antonino!!!! said...

Everything will be ok. Prayers are very powerful and miracles had happen. I will keep you in our prayers.

Mike and Rebecca said...

Hello,
We haven't met but I am the moderator for Intermountain Healing Hearts new forum...I just wanted to stop by your blog and introduce myself and read an update on Brennan. I know how stressful this news is for your family, my wife and I our parents to a little girl who has a similar heart defect, so I know first hand the feelings and emotions your going through. If we can help in any way please feel free to contact me through the forum...my user name is "Braveheart".

Hugs & Prayers,
Mike Patton
Intermountain Healing Hearts-VP

Amy Jensen said...

Janalee and Randall,
I heard the news and now just reading your blog couldn't quite hold back the tears! This all sounds familiar but I will hope and prayer for you guys and your little Brennan! I am glad that you have each other and some great family and friends to fall back on. Most of all a loving Heavenly Father who is so aware of what you are going through and little Brennan's circumstances. I always think that these "special babies" are born to very strong parents who can and will get through this. We love you guys and again you will be in our thoughts and prayers. Good luck and keep us all updated.

The Hood's said...

Janalee and Randall,
Welcome to Intermountain Healing Hearts! You will find SO MUCH support, advice, love, hugs, etc, etc.
We are part of IHH. Our son, Alexander was born 5/12/08. He was diagnosed prenatally with DILV, LTGA. He had a PA Band placed at 3 weeks old, and had his Glenn with DKS in November 08. He has done unbelievably well! He is our Rock Star!
Having this thrown at you is one of the most difficult things! I understand your pain, worry, stress, all that goes along with this. I would love to offer any advice, support, anything that you need.
I too, highly recommend getting secondary insurance. We got Aflac, and were SO happy that we did. Because Brennan doesn't technically "exist" (he doesn't have a SSN), this cannot be classified as a pre-existing condition.
We also have a blog, but it's private. I will gladly invite you to view it if you're interested in seeing our Alex (and the rest of the fam). I would love to offer any other tips that you want. My email is millehood@yahoo.com, please feel free to email with any questions. I'd love to help!
Camille Hood

Little Bear & Peanut said...

We are praying for you! Our Emma had her Tetralogy of Fallot corrected on May 5th. We kept a detailed account of her stay on our blog if you would like to see what it was like for us. We adopted Emma at 5 days old, so we don't know much about this wait you are going through right now, but we know it is not easy. Hang in there, you are in great hands.

The Taylors said...

Hi, we haven't met either, but I am from IHH. My name is Chrissie and my 10 month old baby girl has Hypoplastic Left Heart Syndrome (HLHS) Its a more complicated heart defect she was born with only 1/2 of heart, she has had 2 open heart surgeries and 1 more to go. Like Camille we have a blog, but it's private, I would love to invite you if you are interested. I am sorry that you have to join this scary frusterating heart world. Lots of people just wont understand how you feel or what you are going through. Even family.
I love IHH, they have helped me through a lot. Kylie is such a happy baby you would never know she only has 1/2 a heart. They pretty much summed it up on your post. Oh about Aflac, they do let you sign up, but they didn't tell us you don't get the full thing, I forgot how they worded it. We still got $3500 for Kylie's 1st stay. She was at PCMC for 3 weeks. It really is allot to take in. We are praying for your family. If you have any more questions don't hesitate to post them. I asked the money ? probably 100 times before we had Kylie. Feel free to contact me bnctaylor@yahoo.com also if you want to see our blog.
Chrissie

The Taylors said...

OOPs bnctaylor@msn.com Sorry I hate posting twice :)

Melissa said...

Sounds like your situation is similar to ours. We were sent to a perinatologist to check out our daughter's stomach - which was fine, but her heart was not. We did not see Dr. Gainer then but have with our last baby in 2007. I am glad that you have found Intermountain Healing Hearts. It is great to talk to people who "know" and have been there. Keep us posted with Brennan, and the rest of the family. I'm sure we will be in touch!
Melissa Andrew - IHH

She Made Mention said...

I know you don't know me, but I got your blog from a friend. I just wanted to let you know that my little girl, due in October... also has these same basic heart defects. She has pulmonary atresia, vsd, and double outlet right ventricle. We have also been seeing Dr. Pinto. She is amazing~ so intelligent! Maybe be could chat. If you want to email me, my email is rckclmbrjess@yahoo.com and then I could give you my number. This is our third baby. Her name is going to be Lilliana Faith. Feel free to check out our blog as well. I just want you to know that I know what you are going through. we will be at The university as well. I have my last echo and ultrasound scheduled for this Tuesday. Our baby will also have the shunt surgery the first week and then the tube replacement surgery for the pulmonary artery, closure of the vsd... etc.. Her aortic valve is actually going into the right ventricle, so when they close the hole, it might be complicated. Also, they aren't able to find the pulmonary branches, which means they will be sewing other branches from the heart to the tube (which is in place of the pulmonary artery). Complex, complicated... but like you said, wonderful Doctors! Good luck and i hope that we can get in touch. Jess