A view into the life of a family who encountered a different future than expected, but has become all the richer for it.

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Saturday, May 31, 2008

Corn

Mom and Dad (Mark's parents) came over today and we had such a good time with them. There were many fun things throughout the day, but one highlight sticks out to me.

Natalie has always been a great eater. After Mark and I came back from UAB, we looked at her and said, “What happened?” She looked like she had put on quite a few pounds while we were away. Talk about thighs!! Although she is a great eater, she is still picky about what she eats. Therefore, when she actually ate corn today and liked it, we were surprised. She loved the corn we had. It had come from Mom and Dad’s garden and had just been picked this morning. It was delicious. Natalie agreed and showed it in her consumption of it.

I had cut the corn off of the cob, originally, and she had been eating it that way. Then, Dad gave her what was left of his cob. She loved eating the corn directly off of the cob! She finished off the cob and kept trying to find kernels she could eat off of it. She would not give her cob up for anything. We finally had to distract her to get the cob away. We just had to take a picture of her enjoying her corn on the cob and share it with you.

I believe, however, we will be paying for Natalie’s huge consumption of corn. She’s already been crying and having, what seems to be like, a tummy-ache. Unfortunately, it looks like it might be a long night for the Messicks!

PS - I took a picture of Victoria today. She is looking even better. She had a great day and really wanted to eat a lot this afternoon. I believe that is a good sign. I’ve heard after heart surgery that most babies really put the weight on quickly. I’m hoping that will happen for Victoria also.

Kids Say The Darndest Things

This morning when Elyssa woke, she called for me to get her out of her crib (which is a normal occurrence). We are keeping her in that thing as long as we can! Freedom for her to get out of her bed is a fear of mine and Mark's. We don't look forward to the days when she can easily get out of bed and show up in our room all hours of the night. I believe, however, those days are fast approaching as Elyssa has started climbing out of her crib. The move to a big bed is not far away, I'm afraid.

Back to my story. After Elyssa woke, I took her to the bathroom. I pulled down her pants and sat her on her potty. As she sat and pee peed, she tooted. She looked at me and said, "Do you smell that?" I laughed and said, "No." She said, "That was me." I laughed again. Then she said, "No, that was you!" In response, I said, "No, that was you." Finally, she said, "No, that was Daddy!"

I had a good laugh to start my day! Thank you Lord, for my little girls!

Friday, May 30, 2008

Call Me Crazy

Have you ever felt so frazzled at the end of a day that you thought you would lose it? That's where I am today. My two older girls have really tested me this afternoon. Thankfully, I've been able to remain calm and discipline in the right frame of mind. That is my most un-favorite part of being a parent. Disciplining. You know it has to be done, but it is not pleasant (for either party).

Having two girls that are the ages of 2 1/2 and 16 months is challenging. They are both getting into everything. I almost wish I had two of me so I could split up and chase each one while they go their separate ways. That would be too easy, I suppose.




It's nice when their sweet sides show up during the day. That keeps me sane. And, I enjoy seeing how sweet they CAN be. They can really be cute when they want to be. "When they want to be" is the important part of that sentence. I wish they "wanted to be" sweet all the time. But, that is all a part of terrible two's and three's, right?

So, today I guess you can call me crazy. As I write in my blog, I'm pumping. Mark is watching the girls while I'm occupied. I can hear Elyssa now banging on my bedroom door. I know it's quite funny, but I can endure the pain of pumping for a few more minutes just to enjoy my alone time.

PS - Today wasn't all stressful. The stress came mostly around the later afternoon. There were many fun moments. One exciting moment was that Victoria nursed again. I only had time to try nursing her once in the early afternoon when the girls were napping. She did very well, although she is still dealing with some nasal congestion. I've moved a cool-midst humidifier close to her cradle in hopes that will help her.

Thursday, May 29, 2008

Remembering When

Today was a really nice day. The girls went to Mom's Day Out while I took Victoria to a few appointments.

We first stopped by USA Children's And Women's Hospital to meet with Ann, the lactation consultant. She has been such an encouragement to me during Victoria's breastfeeding challenges. I first met her when I delivered at the hospital. She also came to my rescue when Victoria was rushed to the hospital about four weeks ago. During all of the commotion of getting Victoria stable during that crazy time, she got a pump set up for me and got together what she called a "tittie bag" for me to take on my trip to Birmingham. Since it was such a rushed trip, I had others pack for me and I needed some pumping items. I remember asking Mark, did she say "goodie bag" or "tittie bag?" It was the latter. We laughed about that.

Ann told me that there is hope for Victoria and to keep trying with nursing although she still doesn't do well at times. In fact, today she cried bunches about it. But, her nose was also congested. That could be the culprit for her not wanting to cooperate. Hey(side note!)...I learned something new today! Ann said that you can put a few drops of breast milk in a baby's nose, massage it and then suck it out. It surely worked for Victoria! I've never seen so much junk come out of a baby's nose. No wonder she was getting mad during feedings. She couldn't breathe very well. Ann came to my rescue again!

After my meeting with Ann, I traveled over to Cardiology Associates. I took Victoria for a weight check. She is weighing 7 lbs 14 oz and is 21 inches long. Hopefully, over the next weeks I will really see an increase in her weight.

Kathy, a nurse at Cardiology Associates, has been so sweet to me. I've enjoyed getting to know her. She has such a calming personality. She really helped me through Victoria distress four weeks ago. When they were bringing in oxygen for Victoria and calling the ambulance, she was really understanding of my fears and comforted me in such a genuine way.

As I walked out of their office under the overhang, I remembered Victoria and I getting into the ambulance. It was strange to remember all of the feelings I was having back in those moments of craziness and chaos. It almost seems a world away, but still close all at the same time. I felt so thankful walking under that overhang today. I felt thankful that God had been and continues to be so faithful to us. I felt thankful that He ordered every step we took and brought so many wonderful people in our lives to help us through our trial. I felt thankful for the way He has taken care of us, even when we didn't really know what we needed at the time.

He has been so good!

Wednesday, May 28, 2008

Home Days

Being at home seems weird. Today was a good day, but now at the end of it I feel strange. Knowing that I still cannot get out with Victoria makes being home a little harder than I thought it would be. I would love to see family and friends and attend church, but I have been informed by the doctors to still keep her in for about four more weeks. Even after four weeks, I've been told to "be careful" with how much close contact she gets with people. For that reason, the doctors tell me to keep her at a distance from other children. Children are big "germ carriers" I've been told. I guess I know that to be true with two young children of my own. Mark and I were relatively a "well household" before children came along. Since kids, we've been exposed to viruses and such. I have to even be careful with how much I let Elyssa and Natalie around Victoria. We are kinda playing by the same rules as we did before Victoria's surgery for a little while longer. I'll be glad when this period of recovery is over.

Mark and I were told that Victoria's sternum is to be treated like a broken bone, since it was cut to perform her open-heart surgery. For that reason, we cannot lift her under her arms for a long time. We have to "scoop" her up. It's amazing the things you have to remind yourself of when handling her. When you've had two other kids that you cared for without these types of issues, you get use to doing things a certain way. I'm having to re-train myself in many things.

Life will continue to be interesting. As soon as Victoria is finished with her official "recovery" period, we should be able to begin in-home therapy for her. I look forward to being able to help train her in some things that will be useful to her development. I just pray that I can do a good job for her. I can't help but feel that her development rests in my hands. That is a lot of pressure, but I will do the best I can. I want her to have as many opportunities as possible to develop into a bright, young girl.

I was told by an occupational therapist at UAB that Victoria is pretty unorganized with her feeding patterns. The bad habits I mentioned in a few blogs earlier showed themselves when I tried feeding Victoria with the OT present yesterday before we left UAB. I'm planning on meeting with a lactation consultant tomorrow to get further help with nursing. It will be interesting to see if anything comes out of my meeting. Hopefully, she can coach me in some techniques that will help Victoria feed better and quicker.

Yes, interesting days lie ahead for the Messick family. I don't claim to think things will ever be "normal" again, but maybe in time I will find a more "comfortable" place than I'm in right now. Maybe I won't be so worried that Victoria's sisters won't hurt her by mistake. Maybe I won't worry about her health and her recovery. Maybe I'll feel "carefree" again. But, maybe I won't. Because, isn't that what being a parent is all about?

Tuesday, May 27, 2008

Finally Home

Home. It's where the heart is. Our home is where our other girls, Elyssa and Natalie, were waiting for us.

We pulled into the driveway close to 6pm tonight. Elyssa knew we were coming back home today, but she wasn't sure when we'd get here. She screamed in delight when she saw us. We heard, "Mommy" and "Daddy" first and then Elyssa ran right to Mark. I think it made him feel so great to get her first hug. Elyssa had just seen me the week before so I was hoping she would make a quick dart to him.

Natalie didn't know what to think about all of the commotion and frankly, it all kinda scared her. After about 30 minutes she was happier and taking to her mom and dad again.

Our parents were here to greet us, also. We could not have been away for so long without their help.

We are, also, so thankful for wonderful family and friends who were willing to help in our absence. We've had people cut our grass, cook meals for our girls, babysit our girls, send us cards and money, and many other thoughtful things. God has blessed us abundantly with a huge support system. Thanks to all of you!

PS - I had pictures to upload to the blog today, but we are on dial-up now that we are home and it was taking forever to upload them. I will try again tomorrow!

Hallways

As I think back on our time here at UAB, I have many emotions. I feel glad to be going home, but at the same time, I feel a little sadness. It's here that God stretched me beyond words. It's here that I saw the "family of God" really come to life. It's here that I saw so many miracles.

I pray that in our going home that God continues to challenge me to be "wide-eyed" in seeing His hand always at work. In the "everyday life" you get so busy that you miss what He's doing around you. You miss opportunities to minister to others. You miss seeking Him with all your heart. You get distracted from what is really important.

When a trial comes, it seems that you focus all of your attention on God. You know at that point that you need Him more than ever. It's sad that when things get back to "normal" that we put Him back on the shelf where He was before and go about our business. I pray that I don't do that.

I think maybe God gave me Victoria to help me always remember Him. She reminds me of His sovereign hand and how He guides all of our steps. She reminds me that He is in control even we feel total chaos all around us. She reminds me of His unconditional love. She will always remind me of Him and this special time.

The hallways of this hospital are interesting. That is one picture in my mind that will never go away. Rather, I don't want it to go away, so I took a picture. In the hallways of the hospital area that we are in now, there are toy cars, tricycles and things for the kids to play with. In one of my pictures, you can see a little boy riding a tricycle in his hospital gown. In the midst of these kids having difficult and painful times, they are given toys to play with. This helps them to remember who they are even though they are recovering from surgeries and sickness. It helps them to remember that they are just kids.

Do you ever think that our lives are like that? In the midst of our crazy circumstances, God wants to remind us that we are His children. He doesn't want us to get away from our identity. He doesn't want us to get so wrapped up in the stress of it all that we forget to be just ... His children. So, He gives us grace in the midst of difficult times to laugh and enjoy life even though life seems hard at the time.

As we go home today to Mobile, my prayer is that I never forget these hallways. My prayer is that I remember that little boy playing in the hallway. May I never forget to just be His child.

Monday, May 26, 2008

Signs Of The Times

Dr. Knott-Craig came in to see Victoria today and said that we might possibly get to go home at some point TOMORROW!!! He was going to look over her progress today and let us know in the morning if he thinks she is ready to head home. All of the blood work done today on Victoria looked good. We are only waiting to hear back from the x-ray taken today on her chest. They have been trying to keep a close eye on her lungs since she has had such a problem with them collapsing. We should know more tomorrow about the status of our departure.

Victoria did very well today without her supplemental oxygen. Everyone seemed rather pleased at her progress. I was, frankly, so thankful to have one less tube attached to her. It made holding her much easier. There are only a few more wires to be removed. There is a pacing wire and monitor wires that will probably be removed closer to the time that we leave. She also has one IV line remaining. It's been nice to see wires and tubes removed one at a time. With each removal, I remember what a miraculous work that God has done in Victoria's life.

The past few weeks have been very interesting. It's hard to even describe how I have felt stretched in my faith. To feel totally out of control is a horrible feeling at times. At other times, you just realize that God is way bigger than you give Him credit for. When you are put in a situation so huge, you know that you cannot do it alone. If you are smart, you call upon the One Who holds each moment in His hands.

As I held Victoria tonight, I looked at her sweet face. After the past two weeks, I don't notice her Down's as much. Don't get me wrong. I still notice it some, but it doesn't bother me anymore. What I see now is a baby I love with all my heart. I love every feature about her face, fingers, toes ... her whole body. She is a gift from God. I can see myself always wanting to protect her.

In a weird way, I thank God for this special time in Victoria's life. He has given us all a chance to see His miraculous works. He has let us get a glimpse of His hand at work in all of our lives through a special baby's life. He says in His Word that He chooses the simple things to confound the wise. He just happened to choose Victoria to blow our minds.
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Brave Girl

Victoria has been such a brave girl. She has endured a bunch for a 10-week-old little baby. She has the sweetest disposition and seems to quickly forgive those who stick and prod her. The unit that Victoria is in now has given her something called Bravery Beads. This necklace of beads has a lot of meaning. Each bead stands for something she has endured while being here at UAB, from flying up here on a plane to everything required for her surgery. One day when she gets older, I can explain to her how brave she was as a little, tiny baby. In the meantime, I'll enjoy wearing her necklace as a way of bragging on my brave, little Victoria.

PS - The doctor wanted to try Victoria off of oxygen today. So far, things have been going okay. It's nice to see her face without that tube on it. Hopefully, those little stickies will be removed soon, too.

Sunday, May 25, 2008

Special Nurses

Here is a post especially dedicated to the nurses that have cared for Victoria here at UAB.

Emily was one of Victoria's nurses in RNICU. That is the unit that Victoria was in when initially arriving at UAB. Emily was so sweet and caring. We always felt that Victoria was in good hands when we left RNICU each night. Emily actually wanted to walk Victoria and us over to the surgical unit the day of Victoria's heart surgery. We really felt that she went the extra mile and we appreciated her care for Victoria so much.

Lawana was one of Victoria's nurses in CICU. This was the unit Victoria was assigned to right after her heart surgery. We really had a great time getting to know her. Turns out that she lived in Mobile at one time! She was so sweet to our baby girl and also to us. If it would not have been for Lawana's advice, I would not have gone home to see my other two girls this past week. Lawana actually came to see us in our room yesterday and we really enjoyed our visit with her. It meant a lot to us that she wanted to see how Victoria and we were doing. She is a special lady.

We didn't get pictures of all of Victoria's nurses, but here are some of their names (there have been so many, that I'm sure I don't remember them all):

John, Brandi (who knows Chris & Allison Nelson from North Mobile), Roz, Turner, Ann, Erika, Joyce, Heather, Karen, TL, Peggy, Tim, Shelly, Wayne, Jeff, Janine, Winnie and Sarah

We are so thankful for all of the wonderful care that Victoria has received while here at UAB. God has truly sent spectacular people our way and we couldn't be more blessed!

Are We STILL Here??

This is day 19 of Victoria's "Heart Surgery Adventure." Now being in a hospital room, the days drag by. There isn't as much to do and we are developing a love-hate relationship with Victoria's monitor, minus the love. That thing beeped on and off all night. A few minutes ago, I grabbed that sucker off the high shelf it was on and put it on the bedside table so I could reach the mute button better. The nurse is now trying to find another monitor and toe probe to replace the ones we have in case something is defective. We are pretty sure that some of Victoria's dips in her SATS are correct, but some of them are probably not. Hopefully, the new machine will help us get a more accurate reading.

Dr. Knott-Craig stopped by today and said that "we are getting close." He wants to try taking Victoria off of oxygen soon. Right now she receives 1/4 liter of oxygen and her oxygen level usually stays in the 90's. They will probably begin testing her without oxygen a few minutes at the time to see if her level stays stable enough without it before removing it permanently.

Yesterday, Victoria didn't do so well nursing. I saw some of her old feeding habits surfacing (whether nursing or feeding via bottle) and I was disappointed. I thought I was about to be done with the pump, but it looks like I'm not! I've asked to meet with the lactation consultant tomorrow (if they are working in spite of the holiday) and also a therapist that can help me with Victoria's feeding challenges.

Thank you all for your continued prayers and notes of encouragement. We read every comment that is left on the blog each day, so know that we look forward to seeing all who respond.
PS - I've gotten to be a pro at wrapping Victoria up very tightly in her baby blankets. I call her my little burrito!
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PSS - Here is a cute recent video of Victoria.

Saturday, May 24, 2008

A Mush-Pot Of Things

I have some exciting news to share! I'm pregnant! JUST KIDDING!!! I am crazy, but not that crazy! Actually, my exciting news is that Victoria nursed yesterday afternoon! I had called the lactation consultant to come in and help me just in case Victoria didn't catch on right away. She didn't need any help after all! She latched on and did wonderfully. I was so excited. That is, again, another answered prayer. Before Victoria's surgery, she had such a weak suck. It didn't matter if she was nursing or feeding from a bottle, her suck was weak. I had pretty much given up on nursing pre-surgery and stuck to feeding Victoria with a bottle so she would gain weight. I've been able to tell since her surgery that she is stronger and I thought I'd give nursing a try again. She did such a great job and I praise the Lord for, yet, another blessing.

Yesterday afternoon we were visited by Ronnie Nelson. This is the father of Kris Nelson, who we attend church with at North Mobile. Mr. Ronnie has visited us several times and has been such a huge blessing. At his visit yesterday, he let us borrow his computer camera and headset so we could make some video phone calls via Skype. I was so excited and knew exactly who I wanted to call first. Last night Mark and I used this great technology to call a great friend of mine who lives on the other side of the world. Her name is Donna Havard. It was so wonderful to be able to call her and let her see Victoria. Since she doesn't live here or get to come home often, she was able to get in on a little bit of the hospital action. Mark took a picture of me laughing with Donna. I needed those laughs! Thanks, Mr. Ronnie, for blessing us with your high-tech gear! We wish we would've remembered to take a picture of you for the blog entry today!

Victoria, Mark and I all had a good night last night. Mark actually slept all night on the hard fold-out-chair. He must've been really sleepy because he didn't stir all night. Victoria woke at 4am to feed and then went back to sleep for a few more hours. I slept in the hospital bed with my covers over my head to avoid the constant blow of air in my face from the vent above my head. I actually slept pretty good and just pretended that I was in a tent!

Victoria's last x-ray still shows a small area of collapse in her right lung, but they are watching it closely. We are anxiously awaiting the visit from the doctor today to see how he thinks she is progressing. We will send you an update soon on the report we receive.

We have felt so blessed during our recent adventures with Victoria. She has changed our lives for the better. We cannot imagine life without her and we are so excited for the day that we get to take her home to see her big sisters.


Friday, May 23, 2008

Hospital Observations

As we have been in the hospital for so long now, I've observed a few things. I'd like to share them with you. I call this segment of my blog ... "What Is With ...."

1. What is with the towels they give you in a hospital? They are about the size of a hand towel and thinner than a sheet of paper. Who can expect you to dry your entire body off with a towel of that size? By the time you get done drying your body off with this little towel, it is actually as wet as the rag you just used in the shower. What's the point?



2. What is with the paging system in hospitals? The nursing station can make a page that every room hears through a speaker in their individual room. Mark and I must've heard the same woman paged on our speaker a million times the first night we were in our room. We kept waiting for the nursing station to send out a page like, "Where the heck is Sarah???"



3. What is with the cafeteria ladies and men that all say the word "dietary" the same way? There must be a mandatory rule that employees of the cafeteria have to stretch that word out as long as possible when they say it. It's a special treat for Mark and me to hear that word three times every day. For example: "die .... ah .... tarrrrr ... ie"

4. What is with the menu that they ask you to fill out with your meal choices for each day? The items you circle on the menu are never brought to you. Instead, you are brought completely different items that you never requested. You wonder when you receive your tray at each meal, "Did they give my tray to the person next door?", because none of the items you asked for are on your tray.



5. What is with the little shower nozzle that dangles down over the toilet in hospital room bathrooms? Enough said.







5. What is with the fold out chairs and couches in the hospital? When they fold out, they are not long or wide enough to fit a person comfortably. You might as well have brought a sleeping bag and slept on the hard floor during your stay. Mark would say that sleeping on the floor (or cramming in the twin bed with me) is better than all of your limps dangling off the sides and ends of the fold-out chair.



One last word to all ... "DIETARY!!!"

Burnin' The Midnight Oil

Our first night in a "real room" was an adventure. The last time I fed Victoria last night was at 11pm. Afterwards, I let her sleep for as long as she would before waking to feed again. She woke at 3am very hungry. From what the doctors tell me, she overate a little. She ate almost 4 ounces and never looked back! She definitely has a bigger appetite now. She never spit up anything she ate, but after eating so much we thought she did have a little tummy ache. From 3am on she didn't sleep much, which meant that I didn't sleep much.

Victoria's monitoring system kept alarming which was a pain. The nurse believes that some of the de-SAT readings (de-saturation or decrease of oxygen in the blood) were correct, but some probably were not. Regardless, every time that machine alarmed, we would have to hit a button (which was located high on a shelf) to turn the alarm off. Why couldn't someone be innovative enough to make a remote control for a machine like that? At least I could stay in bed and turn the thing off by remote! Wouldn't that be dreamy?

All morning has seemed to be a fight with the monitoring system. If Victoria gets too cool or moves too much, she alarms. I have been freaked out all morning and have had little sleep. You'll see what great condition I'm in by viewing my picture this morning. So far, it's almost noon and I've had no bath yet. The days of luxury are over. But, I'm thankful, because that means that although I look ugly, I'm able to care for my little Victoria!


Because of all the ups and downs this morning with Victoria's SATS, several of her doctors were paged. We were visited by Dr. Pierce, Dr. Alten and Dr. Borasino. Having all three men in the room was quite a gas. They were joking with us and we were thankful for the laughs. They looked Victoria over really well and all conversed. They believe she is doing well, but she does have some respiratory issues to overcome before going home. We continue to pray that she will make advancements in this area.

Now, let us all join hands and pray that tonight is a better night for Victoria. Let us pray for the monitors that are demonized to be exercised of their evil spirits. Let us pray for Mark to get sleep on the hardest fold-out-chair ever constructed. And finally, let us pray that God miraculously closes off the air conditioning vent that continuously blew directly in my face all night. Amen!

Thursday, May 22, 2008

The Value Of A Gift

Have you ever been given a gift and mistook the value of it? To the giver, it was a very valuable treasure, but you thought it to be something much less. I've done that before with Christmas and birthday gifts. Maybe, at times, I didn't value the gift as much as the giver of the gift might have wanted.

I think back to the first Christmas Mark and I spent together. Even though we had known each other for many years, Mark and I both got each other gifts that were not especially appreciated. After the exchanging of our gifts was over, there were a few uncomfortable moments, then we both asked each other "Why did you get me this or that?" We thought we knew each other's taste better. We thought we knew what each other might want or need in the selection of our gifts. We were wrong.

On March 10, 2008, God gave me a wonderful gift. He gave me a precious child named Victoria Jayne. But on May 7, 2008, God decided to give me an even greater gift. He gave me the chance to see how blessed I was to have Victoria in my life. I had the terrible opportunity of imagining what life would be like without her. If you remember the Christmas classic, "It's A Wonderful Life," well, I kinda felt like George Bailey. I'd been given a chance to see how great my life really is.

See, God knew what I needed in a gift. The gift He gave was highly treasured by Him. Even though I didn't realize it's value initially, I could never forget Victoria's priceless value now. As I fed Victoria this morning in CICU, gazing into her beautiful brown eyes, I realized I had fallen in love with her long before her birth. Even though I was frightened by all the "what if's" during my pregnancy, I know now that I loved Victoria even then. I know that we will have much to overcome together during her life, but I will always love her and accept her. I can say now without reservation that I love my gift!

Today we were given another gift from the Lord. We were able to finally see Victoria graduated to a real hospital room! From the way it looks, we will hopefully be able to take our little gift home on Sunday or Monday.





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Wednesday, May 21, 2008

On The Road Again

I left this morning around 8:40am, heading back to UAB. Leaving wasn't as traumatic as I had feared. Natalie was sleepy from some cold medication so I hugged her up and put her in the bed. Elyssa had just started watching "Super Why" on PBS, so I had to get her attention to give her my "good-bye" speech. I sat her in my lap and asked her where I had to go today. I had been telling her that I would have to go back to the hospital since I had gotten home in hopes that my leaving might be easier. She knew how to answer my question. She said, "You have to go back to Birmingham." I explained that I was going to get Daddy and Victoria and I hoped that I would be home in a few days." We hugged and I told her to be a good girl.

Next I hugged Mark's parents (they were staying with the girls this morning for my mom). When Elyssa saw me hug them, she knew I was really leaving at that moment. She immediately clung to my leg. She walked with me very closely out to the garage with Mark's mom following behind us. I hugged Elyssa once more and told her I loved her. I put my last few things in the van and went back for one more hug. It was then that Elyssa started crying and calling my name. It was so sweet. Thankfully, Mark's mom had brought bubbles for them to blow and distracted her with that. She cried a little more and then was okay. She and Grandmother left to blow bubbles. It was a peaceful departure for me. The Lord answered my prayers!

During my drive to UAB, I listened to a wonderful CD called "The Breath Of God." The music arrangements in the background are a little hokey, but the CD is great. It's a narration of tons of Bible verses that flow back-to-back. I was so encouraged by the verses being spoken. A verse that especially ministered to me was James 1:2-4. Here is that wonderful verse:

"2) Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. 3) For you know that when your faith is tested, your endurance has a chance to grow. 4) So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing."

God reminded me that Victoria's situation is an opportunity for Mark and me to grow. It seems weird to be joyful for this testing, but we can be joyful because we have seen God move in such mighty ways. God has worked and we have been amazed!

God continues to work in Victoria. This morning at 9:30am, the breathing tube was removed. So far, the doctors and nurses seem very pleased with how she was doing. They said she has done much better with the removal of the breathing tube this time.

Today, at 1pm, I was able to help give her a sponge bath. I also fed her 2 1/2 ounces of breast milk! She was very hungry and was satisfied after filling her little belly. The doctor feels 99% sure that she is "over the hump" and looks for her to be in a room in the next few days.

We continue to put our trust in God and remind ourselves that He is in control. He is a good God and we are thankful that He is on our side!

PS - We were surprised by an old college friend today. Brett Burleson drove over from Tuscaloosa to visit with us and Victoria at 1pm. We felt so blessed that he wanted to come see us! Brett serves as the Spiritual Maturity Pastor at Valleyview Baptist Church in Tuscaloosa. Thanks, Brett!! We love you and your sweet wife, April!

Tuesday, May 20, 2008

Going Home

I drove home yesterday afternoon to visit Elyssa and Natalie. It was about a 3 1/2 hour drive from Birmingham. Mark really had to convince me to leave, but I knew that I needed to see my other girls. I didn't realize how much I had missed them until I saw them.

First, there was Elyssa, my eldest. When I walked in the door, I heard my dad say, "Who's here? Who is it?" I couldn't see Elyssa at first because she was standing on the other side of the island in the kitchen. Then I could hear her little feet shuffling toward me. Then I saw her. She had this look of amazement on her face; like she couldn't believe it was really me. Her eyes were so bright and she had the cutest smile on her face. She just kept saying, "Mommy, mommy, mommy...," as she ran to me. I picked her up and hugged her so tight. We didn't let go of each other for a long time. And, yes ... I was sobbing. It was a "shoulder-shrug" cry. I told her how much I had missed her and how much I loved her. I tried to explain to her that Mama had been with Victoria in the hospital and that she is still really sick. I told her that I hope Victoria gets well really soon so she can come home and live with us again.

Natalie wasn't at the house when I initially got home. My mom had taken her to the doctor for cold symptoms. They arrived home around 7:40pm. When my mom and Natalie came in the door, Natalie looked pitiful. Her eyes looked "sick." I hugged her up and she actually reached for my mom again! I totally understand her doing that. She's only 16 months old and my mom has been there for her while she has been sick lately. My feelings were not hurt because I knew that she'd warm up to me soon. Actually, within about 10 minutes she was fine and jabbering about who-knows-what to me.

Today I'll be enjoying time with my girls and I'll either leave this afternoon or tomorrow morning to head back to Birmingham. I have already played outside with the girls and sang and played on the keyboard with Elyssa. We are having a great time!

My heart feels torn at times. I want to be here with my girls, but I also want to be with Victoria. I dread leaving Elyssa. I know it will be harder on her than Natalie. I've noticed today that if I walk off to do something, Elyssa will run toward me asking what I'm doing or where I'm going. She has a look of fear in her eyes like I'm going to leave her again. It makes me feel sad that she is dealing with that anxiety. I will just pray extra hard for her. I'll pray that God comforts her in an unexplainable way when I have to leave for UAB.



I didn't bring the camera with me, so the pictures you see are not recent of the girls. But, I couldn't help but put their faces up on the blog today. They are my heart!

Monday, May 19, 2008

Little Victoria

Little Victoria
Your body so small
Your hands and your feet
Mom and Dad love them all

Your heart now so strong
God has repaired and healed
He’s using your life
His glory revealed

We don’t understand
Why your life has been hard
Our hearts break when looking
Your chest is so scarred

We hurt when you hurt
Wish there’s more we could do
But the greatest of all
Is to keep praying for you

We thank God above
That He gave you to us
You’re such a great gift
In the Lord we will trust

We trust in His hand
We trust in His heart
We trust He knows best
Though we may fall apart

So now in surrender
We give you to Him
We open our hands
True worship begins

Little Victoria
May God use your days
To bring more to Him
And show them Your ways

May He do great works
Through all you endure
Our little Victoria
In His hands secure

Sunday, May 18, 2008

Two Steps Back

You’ll understand why I don’t have a picture of Victoria tonight when I explain what our afternoon has held.

Everything seemed great during our visit at 1pm, however, when we saw Victoria at 5pm we knew something was wrong. Her heart rate was nearing 220 and her little chest was working so hard and fast to get breaths. Mark and I were very concerned and voiced this to our nurse. She had been concerned also and let us know that she and the doctor had talked several times during the day. Apparently, Victoria had shown signs of this condition earlier in the day and we had not been there during those episodes. The nurse called the doctor and he immediately came to talk to us.

From Victoria’s x-ray, she still had a partially collapsed right lung. It had not gotten any worse, but had stayed much the same. The doctor also explained that babies with Down’s sometimes have some extra tissue (glottal flap) in their airway that can become swollen after surgery and after having a breathing tube. This could’ve happened in Victoria’s case. So, this possibly being an issue added onto her right lung being partially collapsed … Victoria was just tiring out.

The doctor initially tried to put into place a CPAP, but Victoria was so active that he knew it would be difficult to maintain the CPAP in its position. At that point he approached us about putting in a breathing tube again. We, of course, agreed because we saw the distress that Victoria was in. We left the unit so they could intubate Victoria. After about 20 minutes, the doctor called us back in to see Victoria. She had been paralyzed for the procedure so when we went in to see her, she was lying limp on her little bed. It broke our hearts to have seen Victoria in such distress tonight, but to also see her limp again … our hearts broke at that sight, too.

The doctor assures us that she is stable and says that some babies take a little longer to wean off of a ventilator. In 48 hours they will attempt to remove the breathing tube again. If she has problems with the second extubation, they will bring in an ENT to make sure that her glottal flap isn’t in need of some attention.

This road is turning into a longer road than we expected. However, the doctor assures us that this is not an abnormal turn of events for a baby with Down Syndrome. He explained that her heart looks great, so this is not a heart issue anymore. This is a respiratory issue.

Pray that the Lord gives Victoria’s doctors and nurses amazing wisdom concerning her current condition. Pray for healing for her little body and strength for Mark and me. This afternoon was very emotional for us. We continue to ask the Lord to help us be strong for our little one.

Window To Your Soul

Have you heard the expression, “your eyes are the window to your soul?” Well, today I’d say that little Victoria’s eyes were showing through to her sweet soul. It was the first time in a while that I’ve seen her focus on objects and look more like herself. Her eyes were bright and alert. She looked so cute!! I just kept telling Mark, “She’s so cute!!”

I held Victoria for a while. Normally, the visiting time allowed is 20 minutes. The nurse let us stay for about an hour. I fed Victoria a little bit by a bottle and changed a terribly poopie diaper. I was feeling more like a mom today for sure!

The only bad news today was that via x-ray, the doctor could tell that Victoria’s right lung had partially collapsed. Yes, yesterday her left lung completely collapsed! Her left lung is fine now, but the right lung is still partially collapsed. They are working on getting it back to full capacity today. The doctor tells us that lung issues are not abnormal for a baby after having such a serious surgery. Needless to say, Victoria will not be moving into a room today like we had hoped.

We sure miss our girls at home. I try to talk to Elyssa several times a day. She is so funny. Right when I get on the phone with her, she immediately becomes a tattle-tale. She either tells on herself or on someone else. Today she told me, after attending FBC Tillman’s Corner with my parents, that a girl named Mattie, in her class, hit her. Then, she went on to tell me that at home with my mom, she spit on the floor. So, everyday I have pretty interesting conversations with her.

Natalie just jibber-jabbers. She will listen to me talk but usually doesn’t talk back. My mom will hold the phone up close to her mouth when she is really talking it up so Mark and I can hear her. She talks up a storm although you cannot understand any of what she is saying. We get a kick out of it.

Our time here has been restful, even though the circumstances have been stressful at times. God has given us peace and has helped us sleep when we needed to. We feel confident in whose hands our little girl’s life rests. She is being held gently in the hands of her Father, who loves her very much.

PS - We are staying with a friend for the next few days. Her name is Erin and we are so thankful that she opened her home up to us!








PSS – We made a little video of Victoria this morning so you can see how much more “herself” she seems. She’s a cutie!


video

Saturday, May 17, 2008

Doing Better

We were pleasantly surprised this afternoon at 1pm, when we went to visit Victoria. She no longer had the CPAP on her face and looked like she was getting back to herself. Her saturation was at 100% without the CPAP so we were excited about that. I was able to hold Victoria and rocked her some. She was wide awake with no signs of going to sleep. In fact, we were told that she stayed awake from the time we saw her at 1pm until we went to visit her at 5pm! Finally, at 5pm, she seemed to get drowsy. I rocked her again then and she fell fast asleep. Needless to say…I loved every minute of it!










We were blessed, at 5pm, to have a couple visit us at the hospital. Their names are Seth and Beth Hamby. They are actually friends of Matt and Susanna Cole, a couple from our church. Susanna had told Beth about me and my blog because they just had a baby a few weeks ago with Down’s. Their baby is still in the hospital receiving oxygen, but doesn't have any heart defects. We had such a great time visiting with them in the hospital that we asked them to dinner. We went to Johnny Rockets at The Summit and had a great time. It was great to meet another couple with a newborn going through a similar situation. It turns out that Beth and I had sung together in Matt & Susanna's wedding. What a small world! I believe that we will continue to develop a neat friendship with Seth & Beth.

Tonight at 8:30pm, little Victoria was still fast asleep. She looked so peaceful. I didn’t even try to pick her up because I didn’t want to wake her. Mark and I just held her sweet hands and rubbed on them. The nurse told us that she had been doing well. She had been fed a few times this afternoon and has done well eating. They had even fed her several times with a bottle! If she continues to do well, it’s possible that she will be in a room sometime tomorrow afternoon.

We are thankful for how God has watched over us during this time. He has blessed us with so many encouraging moments on this journey. One moment that we happened to get a picture of occurred this afternoon. We saw the most beautiful sunset coming back from Johnny Rocket’s. Mark took a picture. It’s amazing the things God uses to remind you of what wonderful power and creativity He has. If He can make such a marvelous sunset, He can work miracles in our lives. He is a great, great God!

CPAP

This morning at the 9am visiting session, we walked in Victoria's room to see what looked like a ventilator back on her face. I felt my heart drop. But, come to find out it was not a ventilator. It is something called a CPAP. It gives Victoria oxygen and puts a little more pressure in her lungs.

The reason why they had to use this on her is because her left lung collapsed early this morning. Dr. Alten (see him in the photo to the left) believes this was due to all the secretions she has had in her lungs. They are constantly sucking stuff out of her lungs, nose and mouth. They believe that her lung has already inflated back to it's normal size so they will probably take the CPAP out in the next few hours.

Just continue to pray for our sweet baby. She is taking a little longer in her recovery than we thought she would. It may be a few more days before she is in a real room. We've told Dr. Alten that we want her to be in CICU until they are really ready for her to graduate to a room. We are not in a rush to get her out of there. He agrees and assures us that he will keep her as long as necessary. He's a great doctor and we have really enjoyed getting to know him.

Dr. Alten asked me today if Victoria is always so active. I told him that at home, even with a heart condition, she was pretty active. She always loved to lay in her cradle and just look all around. Her arms and legs would be going everywhere. She is just as active now in CICU, which can be a problem with some of the things hooked up to her. But, Mark and I love to see her wiggling around!

We are going to move out of the hotel we have been in and spend a night or two with a friend. We are not really sure how many more nights that Victoria will be in CICU, so we just play each day by ear. We are thankful, though, to have so many people offer their homes to us. We are blessed!

Thanks for your prayers and know that we thank God for all of you!

PS - Here is a little video of Victoria with her CPAP.

video

Friday, May 16, 2008

Trippin'











I was able to hold Victoria today for the first time since her surgery. I was afraid I would hurt her! The nurse helped me with knowing how to hold her. Victoria's little eyes were rolling around and she looked like she was "trippin'!" The drugs are still keeping her in la-la land, but they are weening her off. She was moving around quite a bit and kept licking her lips. There is no telling what she was thinking about! But, Mark and I have to say ... no matter how out of it she is right now, we are glad to see her awake and moving around!

B- (minus)

Today when we visited Victoria (at 9am) the doctor said he would give her a B- (minus). She was not exactly where he wanted her to be today. He did remove her chest tube, so that was one improvement. However, they are still in the process of weening her off of the drugs she has been administered. They were hoping to start bottle-feeding her today, but that will probably be put off another day. Actually, right now they decided to stop feeding her milk and just give her a drip until she levels out a little more. When we visited her this morning, she was sleeping. The doctor wants her to be more awake than she is but not as agitated as she has been while awake. They are trying to find a happy medium for her. Our hope was to be a room with Victoria today, but that looks to be put off until tomorrow unless she shows signs of needing to be held in CICU a little longer. In this picture, you can see where her incision was.

This morning we saw the surgeon again, Dr. Knott-Craig. Each time we've seen him he describes Victoria as his "difficult little baby" because of her delicate surgery. We took a picture with him so you can see what he looks like. He's a very nice man. You can see an interview with him on http://video.google.com/videoplay?docid=-3895075412000707339.





Marie Harbison dropped by today and treated us to lunch. She's been a great blessing to us. When we returned for our 1pm visit, we were surprised by some of Mark's family. Here is a photo of Mark with his cousin, Stella, and her children (Harrison, Caroline and Mallory). It was great to see them, even if it was for a short period of time.





Mark and I had a visit from one of his life-long friends, Lloyd White, yesterday. Lloyd was so sweet to take us out for dinner. We had a great time visiting with him.







I believe that the adrenaline from the past week is wearing off and I'm feeling tired and at times, a little down. It's been such an emotional week that it's worn me out. For this reason, it sure has been a blessing to receive all the visits from old friends and new friends that we have met during our stay here in Birmingham. I cannot say enough that God is good. He has sustained us during a crazy time. When we thought we were at the end of our rope, He would show us that either the rope was a little longer or that His hand was right under us when we couldn't hold onto the rope any longer. He has never let us fall and He has never left us alone. He has shown us His love through His Word, our circumstances and His children. He is a great God!

PS - Look at these claws! Mama needs to clip those nails!