Saturday, January 31, 2009

Prayers appreciated

As many of you know our sweet Gracie goes in Monday morning at 7:30am for her open heart surgery. Though we feel scared we know she is going to pull through and hopefully be better off. Tomorrow we will be fasting for our sweetheart and if any of you would like to do so too, we would greatly appreciate it and I know that it will benefit Gracie.

We will update the blog regularly on Monday.

Thanks for your thoughts and prayer in our behalf and especially for Gracie.

Thursday, January 29, 2009

Taking a "load" off

Sometimes Jason can drive me nuts, like most husbands, but he can also be the most sweetness and giving man at times. Today he volunteered to watch the girls while I went out for an indefinite amount of time for some much needed me time.
I debated what to do for some time, I actually thought it would be nice to go to a movie but then decided on getting my hair cut. I've been wanting something different and even thinking about adding highlights--something I've never done before. So, because we were having family pictures taken anyways and I wanted to feel like I could just let go of something...I chopped it all off!!! Well almost....

Tuesday, January 27, 2009


To say that I am terrified is an understatement...every time I think about Grace's surgery on Monday I get sick to my stomach. Logically I know she will be ok, she is so strong and determined but what if...? I'm not even going to entertain the what ifs here because heaven knows I have them running through my head nonstop everyday.

But I can't help but allow my house to be messier than normal so I can play and spend as much time as I can with Gracie. I take every opportunity to take pictures and videos of her these days because.....I am in love with my sweet baby and I pray and yearn that everything goes well on Monday and that Grace recovers and she will continue to improve and be better off than she is now.

Today I was playing with Gracie and I heard a glimmer of a giggle and wanted to cry because I immediately prayed that I will be able to hear many more giggles and laughs come from my baby's lips. That I will be able to see her big, beautiful eyes sparkle as she catches a glimpse of her sister coming towards her.

I know it isn't her time, it can't be. Gracie has so much to do and experience. She is too determined and stubborn to be beat. When Grace had her first round of surgeries and complications one of Jason's old neighbor's had a son spend a couple of nights in the PICU room next to Gracie and after taking some time in the middle of the night to sit with Gracie she made the statement that she thinks many times, an individual has to decide if they will give up and return Home or if they are going to continue to fight and stay here. This neighbor believed that Grace made her decision and wasn't going to give in, she wanted to be here too much. I have often thought of this and of my sweet little one and believe and know this is true. Gracie wants to be here, she wants to grow up with her sister and experience this mortal life---I only hope that it is Heavenly Father's will as well.

Please keep her in your prayers and thoughts, I know that the only way we are going to make it through all of this is with the strength, power and grace of Heavenly Father and our Dear Redeemer.

Sunday, January 25, 2009

Gracie's Glenn has moved up

Last week Linda the nurse practitioner to the cardiac surgeons called to inform me that Gracie's surgery would now be on Monday February 2nd as opposed to Wednesday February 4th. The reason being some type of conference that the surgeons have later that week. As of right now she is the first case of the morning unless something else comes up--We'll know for sure when we take her up on Sunday for her pre-ops.

For those of you wondering what exactly this surgery entails---here you go.

The bidirectional shunt is performed by connecting the superior vena cava (SVC) to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle.

Friday, January 23, 2009

Week of firsts

(Morgan and Gracie kneeling on the floor against a couch cushion.)

The past week and a half has been filled with some major accomplishments for Gracie. It is so fun to watch her begin to start hitting some major milestones and have her little personality begin to show even more.

Last Thursday night, Jason and I were getting ready to go out, we left the room where Gracie was laying on her back on the floor just as happy as can be. All of a sudden she started screaming, Jason checked on her and called me to come--I came in running, worried something had happened, Grace was now on her tummy!!! We were so thrilled that we didn't roll her back soon enough for her liking and she proceeded to scream bloody murder.

Gracie has gained great trunk control, she will roll over to her side and stay there to watch Morgan play and then roll back to her back. But if she gets too upset, she starts screaming and as she rolls to her side she has so much frustration she rolls all the way to her tummy and then since she hates her tummy she screams so loud. It is quite funny and kind of pitiful at the same time.

Another major milestone is that Gracie has started eating solids. We started her on super thin rice cereal made with apple juice, the first few tastes she did great but she quickly learned that she wasn't a fan of the spoon. Her response was that she would gag on it, even though she really wasn't having a hard time swallowing and then she locked her lips shut and would turn her head every time we tried to give her a bite. So I tried putting the cereal in a bottle with the nipple cut and she loves it!! Gracie chugs it down and now knows that first thing in the morning she gets a bottle with apple juice and cereal and she really enjoys it. This morning I tried thickening it to a milkshake consistency and she did pretty well--Grace didn't drink it too fast and was a little confused but she did great.

Yesterday we tried bananas and she liked them. I know you should start veggies before fruit but I figured she would like bananas better than beans or squash and I didn't want her first experience be associated with a taste she didn't like. Grace didn't gag but she still locked her lips, but would allow me to sneak in some small bites anyway, so since she wasn't fighting and/or crying I continued forcing the spoon in her mouth and only a little would come back out. This is such a big accomplishment and though I know we still have a long way to go, but the very fact she is letting food touch her lips and go into her mouth is a big step.

Since I last posted about Grace's tubes in her ears, she has improved even more. She now smiles and loves having us talk to her. Gracie especially loves when I say mama over and over again--I must make a funny face or something.

Grace has become very much a mama's girl, if I have been out for awhile when I come home and she sees me she cries until I hold her. She knows when a stranger is holding her and turns to me and whines until I take her in my arms. Gracie loves to be held and one of her favorite past times is sitting on daddy's lap and watching football or basketball.

I can't wait to witness so many more firsts in my sweet girl's life!!!

Thursday, January 15, 2009

Miracles of Miracles

Do you know what song I'm thinking of? Yes it is from Fiddler on the Roof---I've been singing it to myself for the past two days because we have seen yet another miracle in our sweet Gracie's life!!

As you know Gracie had tubes placed in her ears on Tuesday and then they gave her another ABR (hearing test) and her hearing improved! The first test she had she scored 50 and 60, but the test after the tubes she scored 30 and 40, 30 is considered the high end of normal. The hope is that as she continues to lose more of the fluid in her ear she will improve on her hearing score.

Gracie now turns to the sound of a rattle or the sound of our voices. Oh how wonderful it is to watch that she is able to hear things in ways she hasn't been able to in quite some time---she is so alert and attentive. She truly is a miracle!!!

Tuesday, January 13, 2009

Cath day in review

First of all let me apologize for my delay in posting about Gracie's cath---Friday was quite the day, we left the apartment at 6:30am and didn't get home till 9pm.

On our way up to Primary's we got stuck on the interstate, there was a jackknife semi that made traffic literally be at a standstill. It took us an hour just to get from Thanksgiving Point to the point of the mountain! Needless to say we were an hour late to registration, causing us to be rushed through the whole check-in process---before we knew it we were walking Gracie down to the Cath Lab and saying goodbye. Oh, how hard it was, but luckily the nurses in the lab remembered us and we remembered them, so I was at ease knowing Grace was in good hands.

The whole procedure took about three hours and Gracie did great. She did lose more blood than anticipated, requiring another blood transfusion, but we are use to those---she's seriously had at least 50. The other major complication was that Dr. Day tried to go up her left groin, but met resistance so had to go up the right groin--meaning she would be extremely sore on both sides, poor baby.

We met with Dr. Day and went over the pictures from the cath, things looked ok, not great. Her right mammary gland is still enlarged and pushing on the sano, but not so much that it is blocking blood flow. Gracie's heart's squeeze isn't as strong as they would like, but apparently it never has been---something I've never been told before. But the major information that they found was the strong possibility of a blood clot in between the two stints in her sano. If the clot continues to grow, Grace's blood flow and thus oxygenation could seriously suffer. At this point they aren't even concerned if it were to break off, Dr. Day said that it would actually be better off if it was in her lungs than in her sano----don't ask me to explain why because frankly it puzzled me.

We went up to PACU and Dr. Jou her cardiologist was already there assessing Grace. Once he found out about her blood clot her, he left and literally returned within 5 minutes with a date for Gracie's Glenn (the 2nd open heart surgery she will need)!!! He had said we needed to get it done sooner than later, so she is now scheduled for February 4th. Talk about being hit by a truck! That is just three weeks away! It makes me sick just thinking about it, how am I going to be able to hand my baby over to them after all we been through? Will she come out of this ok? Will I be able to handle another round?

Being home for three months we have been able to put Gracie's delicate heart out of our minds, sort of, and focus on her and now we are forced back to reality and facing more high risk surgeries and possible set backs. But we know that this is what is best for our sweet girl. She has proven that she is a fighter and she is not ready to call it quits. I know that through the skilled hands of the surgeons, faith, and Heavenly Father's help and blessings she will overcome and be even stronger.

We came home that night---the hospital was just going to manager her pain with Tylenol and Motrin so we decided to take Gracie home since she was doing ok. The next day she was miserable, she still isn't eating orally like she was before the cath, but it will come. And just as she started feeling better and more like herself, I had to take her in today for ear tubes, an AVR (hearing test) and a sedated echo. But more on that later.

Thursday, January 8, 2009

Heart Cath tomorrow

All day long we have been preparing for Gracie's cath tomorrow. We have to be at the hospital at 8am, for a 9:30am procedure. She will be staying the night, we just don't know where yet---she is scheduled for the third floor, but I don't really feel comfortable with that. I hoping that there is a possibility for her to go to the PICU--with Gracie you can never be too careful!!

I wasn't extremely scared or nervous until today, I realized that for her two previous caths she was in the PICU and our favorite nurse went with her. Knowing she was with Gracie there watching her made me feel so much more at ease. But tomorrow she will be on her own, I wish that I could request a personal nurse to sit there and be my eyes....but I can't.

We took Morgan up to my in-laws house to spend the night so we wouldn't have to wake her up in the morning and on my drive back I started bawling. Tomorrow is so hard...we have been home for three months and going in for a surgery just makes it seem like everything is going to go down hill from here and she will be on rocky ground again. I know she is always going to be fragile but having her home we are able to focus on Gracie and not her medical condition.

On a different note--Kids on the Move came by again yesterday and were amazed at the progress she has made. Gracie is now drinking an ounce every feed consistently and half the time will drink an ounce and a half to two ounces!! Way to go Gracie!! If we weren't preparing for surgery and needing to keep her weight up I would try feeding her just orally every two hours like you would a newborn.

Grace is also holding her head up well and building her arm strength slowly. When on her tummy she can hold up her head for 10-15 minutes without dropping it. She certainly is a fighter and so determined. I know with all my heart we are going to have her with us for a long long time--she is too stubborn and driven to give up and be beaten. Does she sound like someone else you may know?

She hates it and looks like she is telling us--keep me in her one more minute and....

We will keep you all posted as to how Gracie does after the cath and the results. Please keep her in your prayers, I know we can't do it without you all.

Friday, January 2, 2009

My Two girls

Just wanted to post some cute pictures of my girls. I especially love the ones of them "playing together" lets hope there are many more pictures and experiences of them playing together.
These are from New Year's Day:
These were taken today. Morgan wanted to push Grace around the room in her baby doll stroller but I was too afraid that she would trip or accidentally flip the stroller.
Doesn't Grace look so big? She actually loved being in the stroller and is doing great holding her head up!!