Saturday, July 25, 2009

Now that's a Saturday Morning!!

Our Saturday mornings have let a lot to be desired for the last few months. They consisted of me shushing the kids so Daniel could sleep or tip-toeing around the house to get them breakfast or trying to get a few zzz's myself.

Well, we have finally fulfilled a worthwhile Saturday morning! Complete with a baby who slept until 8 ish and an 8 year old who slept until 9 ish, a few minutes of lounging around in bed laughing at Presley, then we ALL got up to fix our Saturday morning breakfast!!

How long has it been since we have had a good ol' breakfast on Saturday morning....I can't recall the last time (possibly Christmas!). Yummy pancakes (with the help of my flipper, Triston), some crispy bacon, and eggs! And of course after we had our scrumptous meal Presley needed her's too. She ate some apple sauce and went immediately down for a nap.

So, to complete my unbelievable nothing!! Well, if you think nothing is laundry and cleaning and grocery storing and finishing Daniel's birthday shopping! Hey, for me that is nothing.

Wednesday, July 22, 2009

I Am Supposed to Feel Better Now

I got the call. Carolyn. I have a feeling she and I will be talking quite often. She is Dr. Christian's (Presley's surgeon) scheduler. She called me yesterday to schedule our appointments. I have been awaiting her call in hopes that I would have some relief from this anxiety. Well, boy was I wrong. I do not feel relief. I do not feel a bit of peace. If anything I feel more scared now than I did before. I remember feeling the butterflies in my stomach as she talked with me.

Presley's pre-op appointment is set for August 10th. From what I understand this will be a consultation with the surgeon, lots of paperwork, and a visit with good ol' Dr. M. Surgery is scheduled for September 9th. However, on September 8th we will be going to the hospital for pre-op tests. We will do another echo, get all her vitals, and another chest x-ray as well. We will come home that night and return to the hospital the next morning for surgery. That is about how far I have gotten.

Maybe this new found fear is coming from knowing that now there is no turning back. It is in the books. There is no more wait and see. We have moved past that. I know it is what is best. And I know that God is in control. I just have to realize that there are going to be days like this. There will be inevitable emotions that come along on this journey.

Tuesday, July 21, 2009

Smiles, Hyper-activity, Obsessing, and Waiting

I am starting to think that maybe I should not post today as I am soooo annoyed. I don't know if I woke up on the wrong side of the bed or just feeling overwhelmed or what but I am not very pleasant today. Sorry if it overflows into blogger world!!

I didn't get to spend much time with my baby yesterday. She was napping when I got home from work and slept until about 6:30. Then I was off to run the greenway with friends at 7:00. By the time I got home she was already sound asleep! I got to spend a few minutes with her this morning before work. I love that just looking at her mommy and daddy makes her smile! She was a bundle of smiles this morning.

Triston was a bundle of energy. I think the summer sun is getting to him!! He is so rambunctious but I suppose it is better than him being a lump on a log!! I just wish I had enough energy to keep up with him. He and I are going shopping today after work for Daniel's birthday present. He said that we should get him two football jerseys. One UT one and one Titans one. I told him that may be out of our price range. He was quick to inform me that the price of a jersey is a RIP OFF! He said if he had a store he would only make people $40!! I guess he is always looking out for the people!!!

Okay, so remember the post about the tattoo that Daniel got? Well, if we could erase that post and for that matter his tattoo then I would be happy. Not that I think that his tattoo was a mistake. You just have to understand my husband. He is somewhat obsessive. And when I say somewhat, I mean completely. He is an absolute perfectionist. And I cannot tell you how many hours he has spent in front of the mirror looking for errors or looking for ways to upgrade his tattoo. He is driving me crazy!!! I mean that in the nicest way possible!! He will, I hope, eventually get it the way he wants it but for now it is still a work in progress. Pray for me:)

And just in case you wondered there has not been a call from the surgeon to schedule the pre-op appointment. That is also driving me crazy! I need to know when to anticipate these things and I need them to call me ASAP!! I have a call into Dr. M's nurse so hopefully she has some insight for me.

Friday, July 17, 2009

Surgery, after all

In the hospital for 7 to 14 days.................................................................

In Intensive Care Unit for 3 to 4 days...........................................................

On medication to control the PAIN...................................................................

The above statements continue to ring in my head as I try to wrap my thoughts around the fact that my precious 5-month-old baby girl will be under-going open heart surgery in the next month to correct her VSD. Here is the weird thing, I knew the news was coming. I was given fair warning at our last appointment. And when Dr. M called last night I had no idea why he was calling. The thought of the conference had not even entered my mind. The news I was about to receive did not cross my mind. Why didn't I try to mentally prepare myself? Maybe I couldn't.

But I sat, mouth opened, listening to him inform me that sugery was the next step. Then hearing each next step got harder and harder.

We will hear from the surgeon in the next two days. At that time we will schedule a pre-op appointment to get all the details that we DON'T want to know but must find out. At that time, we will see our sweet Dr. M and shortly thereafter schedule Presley's operation. (Operation is supposed to be a fun game you play as a child...not an actual event!) Prepare yourselves, the next part is the hard part to swallow (refer to preface).

He goes on to inform me that after surgery she will be in the hospital anywhere from 7 to 14 days. The first 3 to 4 days she will be in Intensive Care. After that she will go to a room to begin a normal feeding routine and be on medication to control her pain.

PAIN? Wait a second. Why is she going to be in pain? This is supposed to fix her heart not make her hurt. Surgery=pain. I know this. I was not born yesterday. But my mind had not processed that specific bit of information yet. The dots had not connected in that aspect. But it has since become absolute reality.

I could hardly form words at that point. My silence spoke volumes when I called Daniel. He didn't want to believe it. "It is hard to swallow" were his words to me. Ha, you are not kidding about that. I know that each of you will have some feeling of sadness when you read about this. But let me promise you something (unless, of course, you have experienced the same) you will not know the amount of sadness and hurt you feel when you are informed something like this. But I do appreciate the empathy and support!

Not too long after informing all who were most interested in this news my sweet baby girl woke up from her nap. I went in to pick her up out of her bed and just paused for a moment. I held her a little tighter. I prayed for her an extra time. She looked at me and gave me that perfect smile. Presley has no idea of what she is about to endure. She does not know that her heart (and life) will soon be in the hands of skilled surgeons but overall in the hands of God. She does not know of the soreness she will have or the scar that will forever be portrayed on her tiny little chest. All she knows is that she is loved. That when she is hungry we feed her and when she is sleepy we rock her to sleep. She is so aware that we entertain her and enjoy her company as much as she enjoys ours! She knows that her Bubba loves her to death!

God must have big things planned for this little girl.

Tuesday, July 14, 2009

I Give it a Ten!!!

So, Presley's cardiologist likes for us to have her weighed between our visits with him. He likes to know what progress, if any, she makes while she is not in his direct care.

I took off work today to stay home with Presley because her sitter is out of town. So, today we headed to the ped's office to lay on the scales! Each time we have done this in the past the nurse has moved the "thingy" on the scale to the 10 mark and has always had to move it back down to the 0 because she had not reached the 10. Well, TODAY we were able to stay at the 10!! She officially weighs 10 pounds on the dot! 3.5 pounds and 4.5 months later she has finally reached the 10 pound mark (maybe it's the cereal!!). Progress!! Slow progress but progress none-the-less! I am so thankful she is gaining and not losing or staying where she is. However, that does not mean we are in the clear. That hole still has to get smaller and so far that is not happening. But we can rejoice in the small steps!

I had a friend message me one time after a weigh-in and she said, "Way to grow!" I thought that was so cute...I must recycle it. WAY TO GROW, PRESLEY!

Monday, July 13, 2009

The Craziest Lull

I was thinking about how things have been kind of slow lately. No major doctor's appointments or tragic events or dramatic occurences in the last week or so. Now, with that being said, I think back and realize it has been a crazy slow period. I guess crazy isn't always a bad thing. In this case, it has not been so bad. I guess I am just realizing how tiresome it is to have two kids, a job outside the home, and a husband who works two jobs. (Props to all moms!!)

What made me realize this today? As I was running out of the house (yelling at my babysitter, my dad!) all I could see was how high the dishes were stacked in the sink and how the trash had not been taken out in two days and how the ants were making there way back into my house. Triston's breakfast has become a breakfast on the run, as he eats it he car on the way to camp! I think he actually enjoys that! But I don't. Presley has been waking up about the time I need to get in the shower each morning. So, I am usually dressing with one hand while Daniel tries to catch up on his sleep. I am counting down the days for him to be finished with that paper route!

So, Friday night we met some friends and took the kids to the drive-in movie. Ice Age 3 was playing and it was pretty cute. It was a little difficult to focus on the movie with all the chaos around but it was a fun time. Everyone in my house (except Presley and I of course) slept late on Saturday. So, Andrea and I met up (and ran into another friend to run with) for a second week in a row to run. We attempt running anyway. The first time we ran we made it about half a mile running and walked the rest of the way. But Saturday we made it a quarter of a mile longer running. We are making a little bit of progress. It is amazing to us that at one point we ran 4 miles and in the snow!! We will get back to that status soon, Andrea!

So, the rest of Saturday was a cluster of events that all seem to run together in my mind. I had to go to the store after running. Then, we were having friends over Saturday night for the UFC fights. I had to get home and prepare food for that night and get the house clean. Which as you can tell from the first paragraph did not last very long! So, Paul and his kids came over and we ate some yummy chicken wings, thanks Daniel, and cookies while we watched a series of two men beat up on each other. Believe it or not it is pretty entertaining!

Sunday was a drag after staying up late watching the fights. We let Daniel sleep and me and the kids headed to church. That was a chore in itself. Two kids, two bags, a bible and a baby in a carrier. That was my work out for the day. Triston stayed in service with me and he was so well-behaved. A far cry from what happened about a month ago (the last time he was in service with me). So, as soon as Daniel woke up I traded places with him and napped for two hours. I got woke up abruptly so that we could leave and go eat at Daniel's parents' . This was a surprise to me. I guess Daniel forgot to tell me about these plans! Best thing about that is that I did not have to cook, yay!! We came home and endured a nice thunderstorm and headed off to bed. It was a tiring but fun weekend. Luckily, I am off tomorrow to stay home with my baby! Then Wednesday it is back to Ms. Vickie's house!!

Monday, July 6, 2009

Meeting of the Minds

Well, as I am writing this five days after our last cardiologist visit, most of you already know the update and the news from the appointment. But I would be doing an injustice to my daughter if I did not write about our visit. I have not written about her condition in a while anyway so here goes!

As you know, we found out at Presley's two month check that she had a heart murmur which was caused by a defect in her heart...essentially, a hole in her heart. Medically known as ventricular septal defect. I have written about this in the past so this is just an update!

We have been several times to see her wonderul cardiologist. Each time we go I have a feeling in my gut that that will be the day he says it's time for surgery. Presley has, overall, gained about one pound during the whole process. The doctor has her on three different medications, seven doses a day. He has gone up on her caloric intake three times. We are at the highest he will go...10 calories per ounce. He has taken three chest x-rays. He has done two echocardiograms. He has drawn blood. He has evaluated and re-evaluated. He (and I) are getting very impatient. We are not seeing the improvements we would like to see. For instance, he wanted her to have gained a pound in the first stretch of our appointments. Four appointments later...she has gained a pound.

On a positive note, her symptoms have gotten better. The amount of time it takes her to take a bottle has been cut in half. She does not seem to be working as hard to take her bottles and is not very sweaty when she eats. Because of this he says it will not be necessary to put her on a feeding tube. YAY!

However, as he described, just skimming by. The echo that was done Thursday showed that her hole is not any smaller than what it was on day 1. Though we are doing a lot of "wait and see" she is not getting worse. She is not getting better either though. She is not doing as well as he hoped for. Therefore, he is beginning the process needed to schedule surgery.

A week from this Thursday our cardiologist will be presenting Presley's case to a panel of ten cardiologist and threee surgeons. They will then have a meeting of the minds to determine the best treament plan for Presley. This is the initial step in the surger process.

We will return to our cardiologist on July 30th to hear what their results are. In the meantime, I will take her to the pediatrician for a weight check.

It is almost amusing to me to watch Presley at our appointments. She is so oblivious to what exactly is going on. She laughs when we talk about how big the hole is. She never fusses about having her blood pressure taken or anything. Her mother on the other hand, has more knowledge than she wants to have about the whole situation. I know the inside and out of her defect. I know that she will have to have OPEN-HEART-SURGERY. Those are very scary words for my 18 week old baby. Her mother also knows that God has His healing hands all over this baby girl; whether she is healing from a surgery or her hole is healing naturally, one way or the other she is in the best hands she can be.

*Note to self...come back and read this when you are fretting this procedure!!!

Thursday, July 2, 2009

All in God's Time

Last night was our third session of our new ladie's bible study, The Sacred Echo. I have really enjoyed this study. We get very deep in learning about our prayer life and how God feels about us praying. Last night our video was about waiting on God to answer our prayers. There were several questions she mentioned that really hit home for me. And before we got far in the video God started speaking to me. You know what happens when God better listen. So, I turned my attention off the video and listened to God's wisdom for some time.

God began showing me answers to questions I have had for the past five or so years. As some of you may know (and probably figured out) when Daniel and I started dating it was not your ideal situation. Daniel was a bit of a wild child. He was into some pretty "evil" things. He never put me in danger and always looked out for me when we were together. But he could not get himself out of the lifestyle he had created for himself. I worried constantly for him and his well-being. I prayed continuously for him to let go of it and let God change him.

I remember praying each time he would walk out the door..."God give him strength tonight. Please help him to not fall into temptation." Almost everytime those prayers were returned to me unanswered. 90% of the time he had let us down.

I don't remember the time or the place or how it happened but, I remember that God made me a promise. He assured me that He would work on this man (who was acting quite childish). He was going to get a hold of him and change his life remarkably. I heard God loud and clear and I trusted that He would do that. I did not know when or how. I know I doubted Him from time to time. I know I had friends and family that thought I was crazy. But God didn't promise my friends and family. He promised me that He would work and not to give up. So, I didn't give up. I listened. I stayed. I wondered where God was after about five years of waiting. How could God make me a promise and not fulfill. He had not shown up yet when was He going to?

Again, I don't remember the time or place or the exact day but I know now that God came through. He turned that "child" into a man. He broke down those walls and Daniel allowed Him to work. He allowed God to take control and help him realize his mistakes. God had His own timing. He didn't do it on my timing. I had to wait for Him. It was not a fun wait but it was worth the wait.

Thank you, God for answering my prayers. Thank you for taking your time. I know the trials and turmoil that Daniel and I went through (and survived) were all for a reason. Thank you for not letting me give up on him. Thank you for continuing to work on both of us.