Kick to the Gut

So, McKenzie's cardiologist gave me a quick kick to the gut today. At least it felt that way and I don't know why. She didn't really tell me anything I didn't expect. The second echocardiogram of the morning was complete, the doc said "I think we're good." I responded tongue and cheek "I'm glad to hear everything is good." The doc responded with the kick: "No, she is not good, but the echo was good. Let's go to the other room to talk." I know McKenzie is not good, but to hear it said like that was a true shock to my system. She has been doing great. She weighed in at 15 lbs 5 oz today and was 25.5 inches long. She is eating 30 oz of formula a day plus two to three meals of baby food. She looks great, she is happy. She is trying to get herself to sitting on her own. She is even allowing weight to be placed on her legs. We can almost feel her getting to the point where she might go on all fours. So to hear it said that McKenzie is not good was disarming.

The echo showed that the pulmonary arteries have either remained the same size or have gotten smaller. McKenzie's shunt has decreased in size, probably due to build up. And the doc mentioned that McKenzie looked dusky in the office and no longer pink. I have noticed her hands, feet, and lips have been turing blue more frequently, but I told myself I was imagining things. Apparently, I was not.

The doc wants a cath done and she expects they will try to coil off some of the collaterals again. Of course, I was hoping they would wait to do that after her full-fix surgery, but she indicated it was probably necessary. This makes me exceedingly nervous. Dr. Cutler expects the cath to be done in about a month. She also expects that they will want to do the full surgery after this cath is complete. Her guess is that the surgery would be in March or April, right in line with the schedule that Dr. Walters gave us back in May when McKenzie was released after her last heart surgery.

Dr. Cutler doesn't think McKenzie is gaining weight appropriately, so we have to add safflower oil to her diet. Hopefully, it will work without damaging her digestive system. Introducing new things always concerns me. Anyway, I guess we are on track for the next surgery absent some crazy finding in the cath lab. My logical side has been expecting this for at least eight months now, but my emotional side is not ready. Deep down, I guess I still held out hope that no further surgery would be necessary. I knew it would be impossible for her body to fix itself, but I don't want my baby to have to have another major surgery. I don't even want to her to have another cath. I just want her to be happy and healthy without the need for invasive procedures. I guess that is too much to ask.
Mel

Izzy loves her exersaucer, but I can't ever get her to look at me long enough to get a pic. January 10, 2009.

Just as happy as she can be. January 10, 2009.

Messages

Courtney McKenzie-Moore
January 13, 2009, 5:47 PM
I know you're scared about a cath and even the full-fix surgery, but remember how much of fighter Izzy is. She has gone through a lot in her 10 months of life, and she's fought every step of the way. She will continue to fight and WIN. Wouldn't it be wonderful to go back to Dr. Cutler in a few years and have her say "Yes, she IS good" because of her successful surgery? McKenzie CAN get to that point. In the mean time, we'll always be here for you.
Love, Courtney

Dorie Neuhaus
January 13, 2009, 6:02 PM
I think you should call her McCANzie. She had one heck of a start in life and is still fighting her way through. I know emotionally this totally SUCKS for you. I think it SUCKS for all the kids who suffer. So now we do some more praying. Chin up Mommy. We're all going to get through this. We're here with and for you!
Dorie
CP: MatthewNeuhaus

Sundie Guttovz
January 13, 2009, 6:59 PM
Yikes! I think there is a bette way to approach this doc! Prayers for McKenzie and you all... and for improved pulmonary artery size...and correct coil placements! Sending our positive energy and many prayers! Hugs for McKenzie!
Take care, Sundie & Sydnie

Kim K
January 13, 2009, 7:37 PM
hello,
Sundie sent us to pray for McKenzie, what a beautiful daughter you have! My son, Will, has Down Syndrome, he originally was diagnosed with a complete av canal and HRHS, but at his third heart surgery (with a new surgeon) his diagnosis was changed to av canal plus ToF...he was able to have a complete repair. He had collaterials coiled (7 of them) in cath too, just a week before his repair. He
did fine.

I understand, even though I knew he needed all his surgeries and caths, I hated each surgery, it is just not natural to hand your baby over.

ive also had the gut kicked in too when one of Wills drs told me, if he didnt have a reapir the pulomunary pressures will "do him in" in a matter of 3-5 yrs..I was mad at first, that she said that to me..but later appreciated the honesty..it helped to forward with the repair and now he has an excellent prognosis. sometimes hearing the truth, helps us to face what must be done. but I am sorry that you are hurting and I am praying for you.

Hang in there, Hugs,
Kim and Will

June Spriggs
January 13, 2009, 8:01 PM
Hang in there Mel. McKenzie is strong and is surrounded by love,love,love!!Time will tell but my sense of things is that all will be well.
Take Care and kisses to all.
June,David and Kristen

Andrea Welch
January 13, 2009, 8:22 PM
Hi I wanted to say that I will be praying for you and your family. I think we as parents of Heart kids all have one thing or another in common and I am glad for that. I know that someone out there is climbing that uphill climb with me and we can share our journey together. My daughter Jayci is going in for her 6th Cath in April and her 5th Surgery in May. I too had the logical side of me thinking she
needs to have surgery to be better, but the wishful thinking side left me wondering why her heart just can't be normal without surgery.
Will keep you in my prayers.
Heart Hugs
Andrea cp:OurJayci

Laura Davenport
January 13, 2009, 9:22 PM
Aw... I can identify with a lot of your feelings, I was the same way when I knew surgery was approaching but just wasn't ready for it.
Hang in there. Heart hugs from Missouri.
Laura and Lily
cp: lilygrace2
Amy Scott
January 13, 2009, 10:44 PM
Mel - Thinking of you and sending hugs ... Amy

Lauren (Celeskey) Bednarz
January 13, 2009, 11:25 PM
I just wanted you to know that I will be keeping sweet little McKenzie and your family in my prayers. I know your scared and my parents can still to this day identify with your feelings. I myself get scared, this CHD journey isn't fair and isn't easy. Looking toward the positive, staying close with family, and hanging on to faith are the things that keep me sane. Hang in there. God is with you. **BIG Heart Hugs**
With LOTS of hope, love, and faith,
Lauren (21yr. old w/Tricuspid Atresia aka HRHS)
CP: hopelovefaith

Terri Gonzalez
January 14, 2009, 12:41 AM
Hang in there Mel...In time you will have what you wish for....You as her mother know better than anyone when you see improvement and progress...don't let that Doc lessen your hope...shame on her for bedside manners...I continue to think about Izzy and pray for all...Never give up, never give in!!!
=)

John Mazeppa
January 14, 2009, 2:33 AM

Once again God bless you all especially Mckenzie I'm so sorry to hear of your distress but know it's understandable. Our hearts go out to you all, along with our love and prayers, sometimes things in life just aren't fair and this is sure one of them, if you have tears to shed you need to let them out, they have a way of cleansing and then maybe it'll help you to focus on the next challenge ahead. Take joy in the weight gain it does sound good, No matter what that doctor said also the fact that she's enjoying herself and being happy, she needs that too.
Love the Mazeppa's

Char Mazeppa
January 14, 2009, 3:06 AM
Hey Mel, You need a white russian, sweet girl. Come over and we'll discuss how unfair life is sometimes!! It's hard to hear things like what the doctor said, especially in the way it was said. Some doctors have no bedside manner and they don't know how to talk to people in the right way. Fortunately, on the contrary, those are usually the brilliant doctors. We are all praying that even though it was said to you in that 'coldhearted' way, that they will be able to fix McKenzie from head to toe. It's hell knowing what your baby is going through and what lies ahead but it's hardest on you!! The heartstrings just pull and tug and feel like they're ripping out your heart. Don't dispair, keep that faith that you've held on to for so long and know that someday when this is over, McKenzie WILL be the happy child that she is now. She won't remember any of it. You've been so strong through all of this, sometimes you just need to cry your eyes out honey. Do it!! There's nothing wrong with crying....just know that God is watching and hoping that above all, you trust in HIM. God bless
you all, when I'm on my knees tonight talking to God, I'm concentrating my prayers on YOU more than ever right now to give you back the strength that you need to get through this.
Sending my love and my arms to hug you....
Aunt Char

Holly Smith
January 14, 2009, 3:00 PM
I'm so sorry you're going through this, and that Izzy's next surgery is getting closer. I get so  overwhelmed when I think of Elie's next surgery, which I know is coming sooner rather than later. All I can tell myself is: "The only way past it is through it. The only way past it is through it." Please hang in there and stay strong. Izzy's going to do great!
Holly
(CP: EliesPage)

Janeen Greathouse
January 15, 2009, 5:57 PM
this must be very scary for you, but I'm sure everything will turn out just fine. Izzy seems to be such a little fighter and she's still gaining weight so that has to be good. I'll keep all of you in my prayers!!