Thank you all so much for praying for us these last few days knowing that we were going to be facing some hard answers come today.
Jeremy's parents came into town on Friday late afternoon. They come every year and it's always just TIME. :) As we have been anticipating the arrival of Monday, this visit has helped keep us occupied. Especially today, Monday. Today we went to a place called Planet X. Gramps and Gramma spoiled the kids of course, but we ALL just had a blast. We bowled, the girls jumped in cages, the girls rock climbed, Madi, Selah, Gramma and I did the bumper cars!! And oh yes, Madi and I did our first round of laser tag!!!!!! I really think my mind, soul, and spirit...not to mention my body, needed this kind of craziness. I felt like a KID! I haven't felt so carefree in such a long time. Thank you Lord for your little blessings.
I DID come in ....well....LAST in laser Tag, but GEEZ, why can't you just keep shooting? Why the heck do you have to wait for it to re-load? D-U-M-B.
Then came Miniature Golf. One of us had to be with Veiyah at all times. Since I had just gotten my cardio in for the day with Laser Tag, I decided I needed a breather. So off they went while I sat in the nice A/C. My Father-in-Law came to switch me places and I showed everyone who is the real Tiger Woods. ...Not really...i did awful. MADI though, geez that girl. Hole in ones all over the place. BUT she has quite the ego about it....so we'll have to work on that before she becomes like her Daddy in that area. ;)
We're golfing, nonchalantly, when IT happened. My phone rang. It was a 319-365 number. I missed it by 2 seconds, but KNEW it was the University. I motioned to everyone that it was THE call...and I walked out. It was Dr. Reinking. V's Cardiologist. I kept trying to call back but it was busy. Finally a Voicemail came through. Since I have it recorded, I will write what it said.
"Hi Jeremy and Ani, I was calling to let you know that we talk about Veiyah today in Conference...
The short story is that we'd like to do a Heart Cath. The reason for the Cath is to take some pictures where we would get a good look at the Pulmonary Arteries that go to both of Veiyah's Lungs, to see if they've been growing well with the shunts. we can't see them well enough by Echo to say if they've grown sufficiently. The other reason is to measure pressures in her PA's (Pulminary Arteries). Both of those findings will help us decide if Veiyah is a good enough candidate for the Glenn or if she's a good candidate for transplant. Right now the option of transplant is still on the table. If her PA's (Pulminary Arteries) look like they are a good size and her pressures are low, then she'd be a good Transplant candidate. And that might be a better route for her than a Glenn. But we'll kinda need the heart cath to decide that. I know this is a lot of info to leave on your voice mail, but I thought you'd want to know...I will try to give you a call in the morning."
So, I called him back RIGHT away! I basically said, Dr Ben, can you not beat around the bush for me here for just a minute? Is Transplant the way we WANT to go vs. the Glenn?
"Yes. We can only do so though, if her pressures are low and her PA's are a good size. Otherwise, we will probably not even do the Glenn, and instead place shunts in her heart for as long as it works."
Since Veiyah's heart is still functioning well for the time being, Veiyah, if the Cath comes back with low pressures and good sized PA's, will be placed on the Lower Risk Transplant List. This sounds upsetting to me, but you just never know. What if they have a heart in our area, and there are no babies in critical need of that heart at that time...then Veiyah would get that heart. Otherwise, she'd stay on that list until her heart begins to fail. When Veiyah is in heart failure, which we have NO idea of how long that will be with the muscle looking the way it does, she will be admitted to the University, put on an IV drip of Milrinone that basically does the pumping for her, and put on the Critical list for a heart.
So, did I sort of know what news was coming? Yes. It didn't stop me though, from breaking down in the front entrance of Planet X as well as on the phone with Dr. Ben. You mean to tell me that this Monday we've been waiting for wasn't just a thought in the back of my head that I pushed aside as ....well as a dream?? You mean to tell me that you all really got together for a conference today and talked about MY daughter, Veiyah? And you also mean to tell me that you all agree that if all things look good, that a TRANSPLANT is the way to go?
I'd like my money back, please.
I didn't sign up for this.
I'd like my life back, please.
I never asked for this.
...I'd like my mind back, please.
...I'd like my mind back, please.
...Did I just say that twice? My point exactly.
We will take V in next week from what we've heard, to get her heart cath done. Then we will proceed with either waiting for a heart...or making other decisions.
Thank you all for your prayers. We know God has a much bigger plan in this than we know right now. We are nervous but at the same time excited to see what work He has in store for our baby girl.
Keep Kneeling, Knees~ xoxo
For Now, here are some pick me up pictures from our fun and crazy day, before my heart lost it's steady, easy beat that I traded in for a pounding, racing drum...
Monday, August 17, 2009
Thank you all so much for praying for us these last few days knowing that we were going to be facing some hard answers come today.
Friday, August 14, 2009
Wow! What a week it has been since we took Veiyah in for breathing problems only to hear our cardiologist drop the "T" bomb. I guess I didn't realize for a few days that I was in shock from just hearing the words. I cried for the first night and next day...all day. Then I felt a numbness come over me...or maybe I didn't feel it...it just seems like that's what it was, now. Our girls were begging for some time out with Mom and Dad. So we made a spontaneous trip to Applebees and let them pick out whatever they wanted. I'm tempted to branch off and tell you what they got because they never cease to amaze me, but then I'll get off track. Well okay FINE, Geez, you are so demanding sometimes!! So they order Broccoli and Cheddar soup and SALAD. Yup, these are my crazy kids. But hey, I can't complain. I love that I feed them bad enough that they choose good food when we DO go out. ;) I'm totally kidding about me feeding them bad...well kind of kidding.
We ate, watched V play with her feet at the table..(such bad manners!) We let the girls get dessert for one of the first times at a restaurant. I hate getting desserts at restaurants after dinner...unless I'm out with friends and that's all we get. Otherwise, I'd rather stop at Wal-Mart on the way home and pick up some cheap ice cream and go home and eat it in front of the TV. So you see, it's not a health issue what so ever. Should it be?
So of course they had to get the chocolate chip cookie with ice cream and hot fudge on top. droooool... Don't you love those corky waitresses that bring more spoons and say, I brought these spoons for Mom and Dad just in case they want a bite...like really corky like. I just say... ohhhh nooooo, not this Mom!
Mom: Madi, sneak me the spoon under the table.
Madi: HERE YOU GO MOM!!!
Mom: MADI, SHHHH! Don't make me look bad!
Mom: Selah, I'm gonna look at you like we're talking, and you are going to put that bite into my mouth, k?
Okay, so none of that even happened. I dove right in!! Duh!!
So, we're getting ready to leave and I realized that my phone was missing. I had it out on my leg during dinner. My family goes on to tell me that they don't remember me bringing my phone in at all. PEOPLE, I brought my phone in! I was JUST playing Sudoku on it during dinnerrrrrrr... I mean, I was checking for traffic for on the way home! Do you all realize what little things it takes to make me go into freak out mode? Anxiety Attack Alert! My precious precious phone!
So what did I do? I looked at Jer and filled him in on how the waitress or the guy that was helping her STOLE my phone! This was a huge SCAM! Where's the manager? Jer track down the manager! I've looked EVERYWHERE. Last time I saw it, it was on my leg...so maybe I didn't feel them grab it when they were putting their hands under our table. ...wait. So, I finally got another phone to call it and well, it doesn't really matter where it was, does it? All that matters is that the waitress or her helper didn't steal it. So, quit asking me where it was. You probably already know anyway.
So we drive home and we are all SO full. I lay on the couch for about an hour just talkin' to Jer. I said to him, "Jer, did we really drive to Applebees tonight?" He looks at me with his wrinkled eye brow and gives me the "have you lost it?" question. Does he really have to ask?
In all seriousness, I DID forget the drive over there. I still don't remember it. I know we got there, and remember parts of the dinner, but even that was blurry. I couldn't decide if this has been happening all along, or if it was just since last Wednesdays news. My mind seems to shift gears when anything with Veiyah comes up. Not to say that I'm totally with it at ALL otherwise. Just more so not with it.
Since we found out last week, I have been telling family and people who called to check in, that it's so hard to even THINK about a new heart. For a couple of reasons. You're probably saying...ummm YEAH Ani! But let me tell you why just to get it off my chest. See, if they decide to do a heart transplant then that whole thing has it's own risks. First of all, her heart is backwards...on the correct side, but backwards. Second, all of her other organs are on the INcorrect side. So everything is connected the wrong way. Now let me tell you, we have some AMAZING Cardiologists, Surgeons, etc in the NATION here. So, I KNOW that these people would take this on just for pure "Watch me ROAR" kind of thing. And more power to them I say! If they think they have a good feeling about doing it and feel like it even CAN be done, then I trust them as they have shown me their amazing skills time and time again. Ultimately I trust God with the surgeons...but you get my drift.
Now, if they DON'T feel good about it and decide that Veiyah will just live with shunts the rest of her life, then that's a different story. EITHER WAY is bittersweet. With a new heart and the risks of her anatomy, rejecting the new heart, and many more, the risk of her NOT having the transplant is just as high or higher for us. Veiyah's heart is not well. She not only doesn't get good blood flow, but her heart muscle, like Jeremy explained last post, is like finger strands of muscle vs. a full ball of muscle. I think of putting my hand print into something like...dough or a foam mattress and looking at those finger prints to compare them to her heart muscle. Make a ball out of that dough, and there is a strong muscle. Put your fingers on that ball and press down and you get V's heart.
So the other choice besides a Transplant is to do surgery after surgery her whole life that will help her blood flow ....for as long as her heart functions off of that muscle. Period.
Do you get me? Transplant, although extremely risky, if successful she LIVES with a NEW and HEALTHY heart. Without, we give her what we can, to give her the fullest life for as long as she's here with us. Ouch. Did you feel that? I sure did. My stomach is on the floor with my heart.
I've also been expressing my doubts of V even getting a heart to those who have asked. I know a heart Mommy that has been waiting for a heart for her baby boy since last Christmas. Heart Failure till he found one. Do you know how many kids/people die just waiting for a heart? Do you know WHY? You think, well people die everyday...why aren't they getting hearts!? I thought the same thing. Organs are getting harder and harder to come by these days. Especially for babies and kids. Now, is that the most bittersweet thing you've ever heard or what?! Babies have to DIE to donate an organ. A family has to lose the most precious thing to them to donate their son/daughters organs. Not just anyone can donate either. This has to be some freak accident. These kids can't be sick and donate their organs. So basically, my friend Shari has been waiting since Christmas, for a family to get into some terrible accident or for something terrifying to happen to this small baby so that her dying son has a chance at life. Also, how bittersweet is it as well, that organs aren't easy to come by anymore because we as people are being more SAFE. We are putting our kids in car seats. Our kids are LIVING. That's AWESOME. ....but a sad sad thing for those who die waiting for an accident. Can you feel that emotion?
It overwhelms me.
Yesterday, August 13th, 2009, Shari's baby boy, Alex who is just 3 weeks older than Veiyah, received his heart. I woke up around 8am and got my email up and going to read that they got a call at 6:30am reporting that there is a heart available for Alex and to please come NOW. WOW! I can ONLY, for now anyway, Imagine what that phone call felt like. You anticipate for this day, for this phone call. Do you anticipate another family's loss? No way! So where there is JOY in this, there is sorrow as well. How incredible to feel such STRONG emotions at once. How confusing!!
Alex boy, we love you! We are SO happy that you got your heart and that everything is going SO well for you. You are a miracle!! An angel gave you his/her heart. Embrace it buddy!! Shari, I am so absolutely overcome with joy for you and your family. Your son has a NEW and HEALTHY heart! Praise God!! We pray for the family that has no feelings of joy today, but are at a complete loss. That don't understand "Why Me"?? I know those feelings. They hurt. I do know, though, that if Aderah was able to give something to give life to another beautiful soul, then I'd be SO grateful and blessed.
So you see, these emotions are quite huge. I had to ask my nurse if we went to the hospital last week or the week before. I know, it sounds to you that I am losing it. Well, you are wrong, cuz I'm not losing it. I lost it a LONG time ago. ;)
I'll leave you with this cute picture of Selah, sitting in the girls new chair that a neighbor so graciously gave to them. Thank you so much, Suzie! They LOVE it. She's so small with this laptop on her, but she's precious.
God has been showing me pictures of birds lately. So, while Selah represents a child like heart that Jesus is seeking in us, I'm trying to focus on what God wants to show me through ...well, birds. Sounds silly, but I do know that God will give us rest and to do that, He will use what's around us to teach us how to do so.
I found this verse, and I really believe it spoke to me. I believe that God showed me pictures of birds, so that I'd be curious, and I went to His word and studied it, and now I believe He has given me some insight.
6 Blessed be the LORD, who hath not given us as a prey to their teeth. 7 Our soul is escaped as a bird out of the snare of the fowlers: the snare is broken, and we are escaped. 8 Our help is in the name of the LORD, who made heaven and earth.
Maybe it's JUST for me. Meaning that if you don't see how it fits for me, just know that I do. I believe one day our souls will be escaped like a bird out of the snare of the fowlers. For our help is in the name of the Lord. He is watching over us, I have to remind myself of this constantly...and many times I fall short.
Thanks for reminding me, Lord...
Wednesday, August 5, 2009
Today Ani and I took Veiyah down to the University hospital due to her breathing issues. The problem was that she was retracting, which means that she is having difficulty breathing and so her chest muscles are working extra hard in order to get enough oxygen to the body. She has had this happen before and an increase to her heart and diuretic medications took care of the issue at that time. Her medications were increased last Friday and we have been waiting and watching since then to see if
they would help. Today Veiyah’s home nurse came and the retractions were not getting better and did seem a bit worse. She recommended we see our local pediatrician, but we opted to go to the University instead as they have the ability to perform a wider range of tests.
At the hospital Veiyah had a chest x-ray, EKG, and an echo. The chest x-ray was clear and she did not have a fever, so that ruled out any type of respiratory issues such as pneumonia or RSV. The doctors compared her EKG and echo to the last ones they had on her, and did not notice any significant differences. All of this was good to hear except for 2 things. First, it is frustrating to see Veiyah struggle with her breathing and notice her color being more “blue” then it should and not be able to determine a reason. The only thing the doctors could suggest was to change the timing of when we give her the diuretic medicine. The thought being that this may help any excess fluid from building up around her lungs which could help with her breathing. But this was just a suggestion and not a real answer to the problem. So we are going to try this for a couple of days and see how things go.
The second piece of discouraging/frustrating news was our discussion with the cardiologist regarding the echo. Although he did say her heart function and blood flow through the shunts was good and had not changed since the last one, he also let us in on a concern he had with Veiyah’s long term prognosis. He told us that he had concerns with how her heart muscle looked. He had been waiting for several months after her last surgery to see how the muscle would react and grow. He said that her heart muscle was not consistently strong throughout, but rather had finger like strands of muscle. This means there are parts of the heart muscle that are stronger and thicker then other parts. This may complicate or negate any of the structural surgeries that had initially been planned for Veiyah. If the heart muscle is not strong and consistent, then making structural changes may not be possible or beneficial. So the logical next step in this thought process would be a transplant. Talk about a kick to the gut. This path was something Ani and I knew was always a possibility, but when it becomes more of a reality it really hits home. The doctors couldn’t tell us much more then that. In two weeks that are going to discuss Veiyah’s situation with the rest of their team, which includes surgeons and transplant doctors. Until then we will not have an idea of what we face and what our options are.
I would first ask for you to join our family in prayer for complete healing for Veiyah. If God chooses not to heal her, I would ask for you to pray for Veiyah’s health, her peace, and for God’s perfect plan for her life to be manifested in the face of fear and uncertainty. Also pray for our family over the next couple of weeks, that we would feel God’s peace and find His understanding in the midst of the trials we face.
Ani here~ Can't let an update go by without some V love~ She is getting so big! She is 17lbs 1/2 oz. She loves to talk and smile and roll to her sides...G-tube gets in the way of rolling to her tummy. We will go mid-August to get her tube changed to a small button that will sit right on top of her belly. This should be soo much easier.
Veiyah is teething! She has 2 little scratchy bumps on her bottom gums that are THANKFULLY coming in now. She has been hurtin' but is quite the trooper. LOOOVES her finger. Must.Get.Video.Uploaded.
The Linn County Heart Walk is this Saturday. I was hoping to go and still hope to if V is feeling okay. This of course depends on her breathing that day. We hope to become more and more a part of making people aware of CHD.
Thank you all for your patience with us on updates. I will say that No News WAS Good News. It will continue to be too...but we have a hunch it won't be long. It's all in His time.
Enjoy my beautiful girls. ...Oh and my handsome husband...isn't he amazing? :) <3
Veiyah looking WAY too cute in her little hat she received from Katy. Thank you so much. I love putting this hat on her. SO cute. So sweet.
There's that finger!
She's about to rub her nose. How perfect is this?
V LOVES being outside on the Hammock with Daddy. We have been spending quite a bit of time out in our own little back yard. It's safe, it's close...it's home.
No really, she DOES love it outside. Promise. ...;)
Daddy and his girl~
Today waiting for her chest Xray. She didn't make a peep through the xray. It was hilarious. She smiled the whole time. Techs were amazed! hehe Love doing that to people with V! :)
Madi and Selah had to get some shots last month. They didn't know it till the way there! Mean Mommy!!! But I turned into Best Mommy EVA when we pulled into Chuck E. Cheese afterwards with their cousin.