Chubby Cheeks

When Victoria was born, probably the most visible sign of Down Syndrome, to me, was her thick neck and chubby cheeks. She didn’t have a “normal” slim neck like most babies. I have to admit that her looks bothered me. My other two girls were relatively “pretty” (or so everyone said) when they were born and Victoria definitely looked “different” to me.

I remember the hospital photographer coming into our hospital room on the third day of our stay at Women And Children’s Hospital asking if we would like a picture taken of Victoria. I always told Mark during my pregnancy that I never wanted us to treat this baby any different than our other girls. I planned on us having her photo taken in the hospital and I also wanted to purchase a “baby plan” with our regular photographer to document her first year of life like we did with Elyssa and Natalie. I wanted her to know that we were proud of how she looked and who she was. But, as I sat in the hospital room still stunned about her having Downs and feeling in shock about her looks, I questioned if I’d want those hospital pictures after all.

We, of course, agreed to have the photos taken and Mark and I both thought they turned out horrible. (I’ve attached her hospital photo for you to see it.) From the proof we couldn’t tell a whole lot, but we knew that was as good as it would get with the amateur quality of the picture and photographer. We decided to purchase a package and were totally dissatisfied with the pictures once we saw them in full size. I remember crying when I saw the pictures. I could barely look at them.

We debated giving the pictures to family once we got home and spent more time looking at them. We eventually took a picture of Victoria with our own camera and sent that out with our announcements. We thought we did a much better job of getting her photo than the hospital photographer.

As I look at Victoria now, I see a beautiful child. As I fed her today and held her over my shoulder to burp her, I couldn’t help but snuggle up to her chubby cheek. The cheeks that I once could barely look at, I now love. I receive comfort as I feel my skin next to hers. I feel ashamed that at her birth I didn’t initially feel love for her and judged her by her looks and disability. My prayer for her is that as she grows up, people will take time to know her. I want them to see what a sweet and beautiful girl she is in the inside and get past what they see on the outside. There is a lot to love in this special gift. May others not make the mistake I made and judge too quickly what life will be like with her.

I think as she grows, I will always love snuggling and kissing on her chubby cheeks. I think God gave her those cheeks to remind me that no matter how “ugly” and “unattractive” I look in my sin, He still wants to snuggle His face against mine and let me know He loves me no matter what, too.

Thank You, Lord, for chubby cheeks!

Twins???

Ever since I was in high school, I remember telling my family members and friends that when I got married one day I would probably have twins. I was convinced that I would be the one in our family to have twins. See, someone in my family should have twins in my generation because my mom and aunt are twins. We were told in our family that is something that usually occurs every other generation. I think the reason I was so convinced of this back then was because I was as skinny as a bean pole. I knew I’d probably be the one to have to endure that pain since it would be almost impossible to squeeze two babies out of my tiny little body, much less one baby!

Okay, maybe that was part of the reason. The other part of the reason was that God had put something inside me that made me really feel like I’d have an unusual pregnancy. I assumed that meant twins were in my future, but looking back now I was mistaken. However, God was preparing me back then for something different and I just thought I knew what it was.

I remember an incident that occurred one particular night at my church while I was in rehearsal with our praise team. Two of my friends (Amy & Alicia) were sitting on the front row of the church and I could tell they were talking about me. I asked them what they were talking about. They said that they thought that I’d have twins one day. Keep in mind that this was before I’d had any children. We laughed about it and I told them about my always feeling like I’d have twins. They thought I had the laid-back personality required for having twins.

Looking back now … isn’t it funny that other people knew I’d have something unique in my life concerning the birth of my children, too? We all thought we knew what God’s plan would be, but He sure surprised us, huh? But, the thing we all knew was that He had already equipped me to handle the extra stress that would come along with a special pregnancy and birth.

Thank you, Lord, that You place in us the ability to handle whatever You send our way. And, You allow just enough stretching to cause us to run to You for help.

Trust You Lord

It’s interesting to see how God prepares you for the future when you look back on your past. I say that because today I was listening to some old cassettes of songs I had written several years back. Most of them are worship songs to be sung in a church worship setting. And, keep in mind I’m a simple writer. I don’t claim to be the best songwriter or even a good one. I just write. Anyway, as I was driving in my van to an appointment today I came across a song of mine called “Trust You Lord.” I wrote this song during my “single years” of more than six years ago. You’ll see why I was brought to tears hearing myself sing these lyrics in light of my present circumstances.

TRUST YOU LORD
VERSE 1
I will lay my hurting heart at Your altar
And trust You Lord
Trust You Lord
I will trust You with my faith that falters
I will trust You Lord

I will lift my empty hands to Your altar
And trust You Lord
Trust You Lord
I give my life a token of surrender
I will trust You Lord

CHORUS
I will trust You Lord
After all look at all the miracles You do
I will trust You Lord
I give You my mustard seed of faith
And I will trust You Lord

VERSE 2
I will lay my joy and dreams at Your altar
And trust You Lord
Trust You Lord
I will trust You when the time is uncertain
I will trust You Lord

TAG
Handing my heart over to You
Putting my faith in all that You do
Knowing that You love me
I will trust You Lord
I will trust You Lord
I will trust You Lord

The Beginning: Part 2

This is an email I sent out on Wednesday, March 19th. The name of the email was called "Life With Victoria." Hope you enjoy the read!

LIFE WITH VICTORIA

Well, it's been a little over a week now that Victoria's been with us in this crazy world and we are loving her so much already. She is a sweet baby and I find myself hugging and kissing on her every chance I get. Elyssa would like to be doing the same, but she has been sick so I try to keep her at a distance. So far all Natalie has done is pull Victoria's hair once. I try to keep her at a distance too, since she doesn't know how to be gentle yet! Ha!

Last week was very overwhelming to say the least. To go to my doctor appointment Monday morning (the 10th) and then to be delivering Victoria at 7:14pm that night was not what I expected that day. I was so unprepared for all that would happen in the hours ahead.

I knew what the doctor's were telling me all along about Victoria's health conditions, but I was still praying for God to work some kind of miracle that would prevent her from having Downs or any heart problems. I know God could've done that, but he chose to bless us in an extra-special way. I don't know that I looked at Victoria as an extra-special blessing last week. All I could think of were things way out in the future. I was so overwhelmed with all that might lie ahead for us and for her. I felt like my life may be over somehow.

The best thing that could've happened for me is to actually bring Victoria home. Living life with her this past week at home has been a blessing to me. I have learned to focus on today. What does Victoria need today? She needs me to change her diapers, feed her, burp her, love on her ... just like I did with Elyssa and Natalie. The worst thing I can do is worry about the future.

I admit that I have had hard moments when I break down, like when I bought a baby book for Victoria the other day and I cried when I thought ... will she be able to read what I write about her in this book? Will she understand everything I jot down in here? These are just a few things that I've thought over that cause me to feel sadness or experience a "grieving" over the life she may not have that I hoped for her. But, God reminds me that before Mark and I ever met, He knew what my future held. He knew that He would give Mark and I Victoria to raise for His glory. I never pictured myself to be the mother of a special-needs child, but it's weird to me that God did. He knew that He equipped me for this job when He formed me in my mother's womb. So, I just have to trust that He knows what He is doing in giving me this sweet little girl.

The most precious thing that I've seen since being home with Victoria is how Elyssa wants to love on her. Elyssa doesn't know that Victoria has any problems. She just sees this sweet baby and wants to love on her. I know that Elyssa and Natalie will always love their sister and will probably not even realize for a very long time that she is "different." What a wonderful love! I sense that same love from our families and also from our church family. Everyone has been so sweet to us and we truly feel an unconditional love for Victoria already.

Please continue to keep Victoria in your prayers. We meet with the Pediatric Cardiologist on March 28th. I'm sure we will begin talking over a plan for Victoria's heart surgery and when that might be. Pray that God continues to work in her body and that He provides healing as only He can.

Pray for my sanity in raising three girls under the age of three! It's been a little hairy at times and I'm so thankful for all the help we have had from family and friends. I'm sure as I get into a routine with Victoria that things will settle down some.

PS - Some of you might not know that Victoria was born on the 10th and my birthday is on the 13th of March! Interesting story ... the morning of my birthday (2am), Mark had to rush me to the emergency room because I was having an allergic reaction to the pain pill I took the night before at 10pm. Interesting birthday present, huh? The hospital doctor and nurses hooked me up to an IV and gave me a large dose of Benadryl to relieve my swelling throat!!!

Thanks for all your prayers, friendship and love. They have meant the world to us during such a time of transition. All I can say is ... to God be the glory!

The Beginning

My mind was flooded with a million questions and my heart with a million emotions as my baby was born at 7:14pm on March 10, 2008, and thought to have a strange, genetic disorder called Down Syndrome. She was what you also call a "blue baby" when she was born. She had been thought to have heart defects from ultrasounds done by my specialist and also a pediatric cardiologist prior to her birth. These defects were confirmed shortly after her birth. Our lives were to be changed forever.

I could tell immediately after her birth that her cheeks were especially chubby, her neck seemed to be thicker and her fingers even looked different than her sisters did at their birth. I did notice that her eyes seemed to be set further apart, but that could've been an illusion created by her flatter nasal bridge. I wasn't sure if I thought she was a pretty baby or not. She was just different.

You would think that being told of her possible problems before her birth would've prepared me for the event, but I still wasn't. In my whole life I've never sobbed with such despair as when the social worker came into my hospital room two days later to tell me of early intervention programs available to my husband and I for our little baby. She told us of mental and physical problems that our little girl may encounter as she grows. I know she meant to help by giving us this information, but I was not in a place to be able to handle it. I had never imagined myself to be the mother of a special-needs child. Never in a million years had I dreamed this would happen to Mark or me.

We are both intelligent people. Mark graduated first in his high school class and was Valedictorian. He went on to earn a Master's degree from seminary. I was a college graduate in music and was teaching in a college. It just doesn't seem logical that we could have a child that will have trouble learning, speaking, walking, eating, etc. There must be some mistake. Maybe this was meant for another couple. But, all throughout my pregnancy God kept bringing me to a passage in the Bible ... a passage I must cling to so Victoria's life makes sense to me ... "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God!" (Psalm 139:13-17)

Victoria was no surprise to God. In fact, He formed her to be just the way she is. He knew and recorded all her days before any of them came to be. He knows the lives she will touch, the laughs and smiles she will bring to people and how she will change her parent's and sister's lives in such a wonderful way. We did not ask to be given her nor did she ask to be given to us. But, God somehow knew that we needed each other. He knew that we would be good for each other and that Mark and I could handle being her parents. Just like He knew I could handle my 2 1/2-year-old and the crazy behavior she is having at times right now or how her 15-month-old sister eats like a cow and swings her right arm so cute when she walks ... He knew I could handle Victoria and her challenges.

No matter what emotions I experience on this journey, I can rest in knowing that God is for me. I wrote a song several years ago called "Your Bottle" and it really hit home with me during my pregnancy and even now when I shed tears about this new life I have. The following verses were the inspiration for my song (Click on the title of this post, "The Beginning", or the link http://www.box.net/shared/ajk3ouask4, to hear the song "Your Bottle"):

Psalm 56:8,9 (Amplified Bible)
"You number and record my wanderings; put my tears into Your bottle ... are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me!"

Thank you, God, that you have planned out my days and that You saw fit to bless me with three sweet girls. They are all blessings from You, no matter what the future holds. You are for me!

Heather

Victoria Jayne Is Here

I just wanted to let you know that Victoria Jayne was born today, March 10th, at 7:14pm. Just three days before her mother's birthday (March 13th). She weighed 6 lbs 15 oz and we are not sure of her length quite yet.

I'm doing great and just had to push about 3 times. I was induced at 12pm today per my specialists suggestions to my regular obgyn. The specialist was concerned about my amniotic fluid being low at my visit with her today. So, yes ... I went to my specialist without any packed bags and the next thing I know she is sending me to labor and delivery to get an induction!!!! It was a little crazy!

Victoria seems to be doing well and is in the regular nursery. She does appear to have Down's Syndrome by her facial features and neck, etc. They will do testing tomorrow on her heart to see what defects might be there. Her color was a nice pink so they think that maybe the defects might be smaller than anticipated. We will not know for sure until the testing is done, though.

God has really given Mark and I a peace about Victoria and the special girl that she already is. We've been told by several people that God only entrusts such special babies to such special parents. That might be true, but we are blessed to be surrounded and supported by an incredible family, church family, and wonderful friends.

Thank you so much for praying for us! Please continue to lift Victoria up to the Lord!

35 Weeks

I'm 35 weeks along now and Baby Victoria Jayne will be here soon! I just wanted to give you an update so you can know how to continue praying for her.

Each week I go to my OBGYN and do a Biophysical Profile. They score Victoria in 5 categories. The highest she can score in each category is 2 points making a total score of the test a 10 (that is the best score she can get). The 5 categories they score her in is:

1. Her heart rate
2. Muscle tone
3. Movement
4. Breathing
5. Measuring the amniotic fluid around the baby

For the past 6 weeks, she has scored a 10 out of 10, which is great. That tells the doctors that she is thriving in the womb and that there is no need to induce me earlier. So, continue praying that she does well in these weekly tests so I can carry her full-term. I only have about 4 or 5 weeks to go, so we are in the home stretch.

Continue to pray for the healing of her heart. The doctors still see problems there, and they are also concerned that she might have Downs or some other genetic disorders. They are not certain about any of that, and won't be, until she is born. So, pray for healing in the rest of her body also, if there is anything else going on with her.

Pray for Mark and I as we are uncertain about how the delivery of this baby will play out and if there might be any extended hospital stay for Victoria. I am already thinking about what arrangements I might need to make for my other 2 sweet girls at home. So, just pray for a smooth delivery and God's direction in how we need to care for our other 2 girls in this process.

I go to my specialist again on March 10th. At that point, we should start looking at induction dates, etc. So, I'll make sure to let you know what my specialist says about how the baby is looking and what the induction date will be.

Thanks so much for all of your support and prayers. They mean more than you can imagine!

31 Weeks

Thanks for your continued prayers for Victoria Jayne. They are still very much needed. Just so you know, I'm 31 weeks now. We are nearing the end of this pregnancy!

Mark and I went to my specialist yesterday, Kathy Porter. She said that Victoria had grown more, which was good, but she said that her femur measurement was still a little short. But, she did seem encouraged by her growth. In all this, they suspect the heart issue or a possible genetic problem to be the cause of the lack of growth they are seeing. That will not be known for sure until Victoria is born, however. They estimate Victoria's present weight at 3 lbs 7 oz, which is typical for her gestational age.

We could see an ear and some fuzzy stuff on her head, which the tech said was hair! We NEVER saw hair on an ultrasound with our other two children! So, that tells you how much better these ultrasounds are! Victoria was head down (vertex) and facing my back so we never could get a profile or front view of her face. She was hiding yesterday!

They are still seeing a large atrium-ventricular septal defect (AVSD) and large ventricular septum defect (VSD). However, this visit, Dr. Porter said it looked like the right ventricle wall was thickening (decrease in chamber size). She said that the heart may be really having to work hard. She did mention "heart failure" and "hydrops" in a sentence but I cannot remember her exact words. I guess they are looking for signs of these things but are not seeing them yet. Here were her exact comments in her report that I give to my regular OBGYN:

AVCD with large ASD and VSD and decrease chamber size right ventricle with right wall thickening. No sign hydrops. Dopplers across valves limited today.

So, although she said that the ultrasound views were limited today, she thought she was seeing that decrease in the chamber size of the right ventricle. I guess we will know better on Thursday when I go to see the pediatric cardiologist. They will repeat a heart echo there to verify these possible findings.

Please continue to pray for Victoria's heart and body. We know that God can do anything and we are asking still for a miracle.

Also, just say a prayer for me. These past three days have been really rough for me. Mark is doing better this time around. I'm the one seeming to fall apart. I am beginning to feel overwhelmed knowing that the time is growing closer for Victoria to be here. I want to be happy at her coming, but it's hard not to feel worried about her or wonder what our lives will be like after she arrives. So, more than anything ... we just covet your prayers for strength for her and for us. We know that God is walking through this with us, but honestly, the past few days I've feel a little alone with my emotions going crazy. Thanks for your prayers for peace.

Thank you all for remembering our family. We love you and pray blessings on you as well!

Getting Close

Today Mark and I went to see Dr. Porter (my specialist). She said they are still seeing the heart problems they had seen in the past. Something that was different today, however, was that the head and femur had not grown in proportion with the rest of the body. This is something they say is a sign of a chromosome abnormality (such as Downs or Trisomy 13/18). She wants me to come back in 3 weeks and she said don't be surprised if she says that there is still a lag in growth. She suspects this will happen. She said if this continues, there is concern for still-birth at some point. So, to prevent that from happening, she'd want to do an amnio if the growth continues to lag to see if the lungs are developed enough to induce labor. At this point, she said doing an amnio would fulfill the purpose of trying to save the baby's life (by making sure the lungs were ready for delivery).

It's kinda crazy ... the heart doctor recently said that he wants me to carry full term (so the baby will gain as much weight as possible to prepare for the heart surgery), but now we might be presented with a situation in which the baby has to be induced early to prevent still-birth.

We just don't know what the future will hold for us or baby Victoria. All seems so very uncertain and nerve-racking at times, but we always have to remember that God is with us every moment.

Please continue to pray for healing for Victoria's body and wisdom for us and the doctors. I am now 27 weeks and it is seeming we may have to make some decisions earlier than we anticipated.

The Cardiologist Visit

I just wanted to let you know the latest on Victoria Jayne (the baby I'm expecting April 3rd).

Mark and I met with a pediatric cardiologist a few weeks ago. He said that he is seeing two problems with Victoria's heart right now. He said the septum (the wall that separates the left and right side of the heart) does not run completely across the heart vertically as it should. It is missing in the middle of the heart, which would allow the oxygenated and non-oxygenated blood to mix. Also, there should be two valves and he is seeing only one big valve.

He reminded us that he is looking at a sonogram that is trying to get a good image though my body and the baby's body ... trying to look at Victoria's little heart. So, he said that there is a chance he is wrong and we surely pray that way ... but, he is 95% sure he is right. But, after Victoria is born, he'd do another heart echo to see exactly what is going on.

He said that most babies having these types of defects are Downs babies, although the girl he saw right before in his office had the same two defects and she was not Downs or didn't have any other genetic disorders. So, he said we will have to wait until the baby is born to also find out about that.

When Victoria is 2 1/2 months old, he'd want her to have open heart surgery at UAB in Birmingham (if she actually does have these defects after she is born). He'd want me to carry her as long as I can to get her as fat as possible. Then, during those 2 1/2 months, he'd want me to try and continue to plump her up to prepare for her surgery. I'm sure she'd have some weight loss, but he didn't say how much.

Anyway, please continue to pray for Victoria's heart and also the looming genetic questions (Downs or Trisomy 13/18). I pray that she is born completely healthy, but also know that I have to accept whatever the Lord's will is. Thanks for your prayers. We will see our specialist again on January 7th, so the visits will start up again ... JOY!!! (I'm saying that very sarcastically!!!)

Take care and I'll make sure we keep you updated on everything. Happy holidays and New Year!