Thirteen Things About Ivey

Thirteen Things about Ivey 1…. She has a sweet personality with a little bit of sass! 2... She has a beautiful smile. 3... As of this morning, she weighs in at 8 lbs. 6 oz. (4 months 1 week old) 4... She loves her pacifier. 5... She can rub her conformers from her eyes. (Not so much a good thing.) 6... She has a sweet cooo when she talks. She is loud when she cries. 7... Her reflux has improved since she switched to Prevacid. 8...She looks beautiful in pink, also in green. (mint green) 9... She actually prefers to were her mouthpiece (aka = NAM) 10.. She Loves to wear bows in her hair. 11.. She has blonde hair. 12.. Her first surgery is scheduled for Friday, October 27. (Georgia/Florida Weekend!) 13..She has met some new friends with similar disabilities via the world wide web and ICAN. Links to other Thursday Thirteens!

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Control

Many of my friends are in the same boat I am in right this very moment, for the most part. Life with small children. There are several modes needed to survive life with small children, or probably children in general. - I do think that survival is the appropriate term for the moment. - I will go out on a limb and speak for the majority of my friends, all based on any given conversation, and say that we feel like we have everything under 'control' at all times.

It is all a delusion.

Today, I am functioning in the most detrimental mode of them all. I have lost 'control', which I probably never had it to start with. But, I think that I am still in 'control'. Havoc is running rampid throughout our household, but hey, it is all okay. Why you ask? Easy, I have it ALL under 'control'.

To start with, my friend Sarah rode with me to our 7:10 AM, that's right 7:10 AM, appointment at Scottish Rite this morning. After encouraging her that we should be on the rode BY 5:30 AM, that's right again, 5:30 AM, I slept until 5 minutes before she arrived at my house. Where at that point, I heard our nurse call my name down the hallway. I was out of the bed like lightning with my heart jumping out of my chest. Needless to say, we were not on the rode at our 'Gwen appointed time'. Thanks to crafty driving, Sarah had us there on time.

As we were pulling back into Rome a little past 9:00 am, Matt called the cell phone. The boys were not going to preschool today. Quick arrangements were implemented. Long story short, I made my weekly visit to our pediatrician by 10:20 am, except this time with the boys. We love our pediatrician, but he will probably be able to retire off of our family alone. I returned the boys home, made lunch, jetted back out to the grocery store, and now have managed to survive until naptime. All the while, still in 'control'.

Now naptime is upon us. (1:oo pm)

I just managed to peek around the boys bedroom door without getting caught. This is a very risky attempt. I have to step on the right sequence of boards on the hardwood floor so that the squeak does not catch their attention. Right now, Knox is asleep. Walker is sitting on Knox's bed playing with some loud toy giving an all-out effort to wake Knox. All I hear is Walker saying,"Knossssh get up, I wake". The question here is this,"Do I attempt to go into their room and place Walker back in his new big boy bed, or do I wait it out and let him pass out from sheer exhaustion"? Ivey is starting to rouse from her sleep. (Dr. Rogers does not have the answers to these sleep issues in his notes. I've looked!) The phone is ringing. My cell phone just stopped ringing. I am just sitting here listening and taking a moment to share the humor of everything that is going on around me. Sometimes you just have to laugh. Right?

Really, it's okay to laugh. I am still in 'control' over here.

And with my glass half-full I will say, tomorrow is another day. Oh yeah, we will be back at Scottish Rite by a more reasonable 9:30 am. Ahhh, there will be Thursday. Oh, but I almost forgot, I will make my second visit to our pediatrician, this time with Ivey. I refer to visits with the pediatrician with 'I' because I am not sure if he is really monitoring the children or me. Later on Thursday, Ivey will visit the dermatologist to address this nasty rash on her face from her ng tube and tape. Have no fear, I am still going to be in 'control'.

Here I will say, I would not have things any other way. Eventually, I will look back, remember, and laugh about these days. And you guessed it, I will still be in 'control'.

Signed,
The One In 'Control' - Gwen

St. Peter's

Sunday Ivey attended her first service at our church, St. Peter's Epsicopal. I do believe it was one of our more magical moments. She made it through the service with minimal fussing. (Or from the parents of three, Matt and I thought it was minimal.) She seemed to enjoy the music and Father Ard's voice. Ivey cooed through them both. At moments, it seemed like she was sending out her acknowledgement of what was being said. It was almost impossible to hold back tears as I held her and she accepted her first communion in St. Peter's. It was even more overwhelming to pray aloud for her during the service along with the other members of our congregation. I think she knew her name was being spoken. This was Ivey's first time out, with the exception of hospitals and a few lunches or dinners with friends. Ivey has been held so closely in the hearts of our church, we wanted her first time out to be in the confidence of St. Peter's.

Happy Birthday Ivey - 4 Months and Counting......Blessings

In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9
As an individual I had a plan for my life. So far things have worked out according to my plan. The general outline was as follows, high school, college, and career, find right man, get married, have children, raise children, and grow old with husband. Along this path, the threads have weaved themselves into a fabric that has become the canvas for my life. Looking closer, the detail in the canvas is exquisite. A true masterpiece.

Today Ivey is 4 months old. I can’t help but wonder what her plans are in her own heart. And yet, what plan does the Lord have for Ivey?

Each one should use whatever gift he has received to serve others, faithfully administering God’s grace in its various forms. 1 Peter 4:10
Ivey is full of wonder. She is a Gift from God, given a very special skill. She has the unique ability to touch the heart and soul of every person who whispers her name. She can unlock hearts that would never open under any other circumstance. She has the power to humble the most prideful of individuals. Ivey unlike others will be able to use the gifts God has given her for their divine purpose.

Every good and perfect gift is from above. James 1:17
Ivey is perfect. She is my baby girl. This week she weighed in at a whopping 7lb. 12oz. She is diligently pacing herself in all that she does. She is teaching me the joy in patience. In this past week alone, she has met a couple of her own milestone. We knew that Ivey’s milestones would be unique to her, not necessarily those of the average baby. This has been a topic of complete apprehension. Little did I know, her milestones would cause sheer joy throughout our household, they revel with the sight of seeing your first born take his first steps.

(At this point we have tossed all the books, What to Expect the First Year, etc. You know the books I’m talking about. We don’t even mention the comical “Growth Chart” that all children are plotted on and then scrutinized at Mother Outings.)

Ivey has been sleeping, lying on her back, with her hands thrown over her head in sheer comfort. Up until this point, her contractures and stiffness would not allow her arms to rest comfortably out-side the center of her body. She sucks on her fingers for comfort. Ivey is smiling full-size grins. She smiles when I say her name; sing to her, or when she hears her brothers. Ivey loves when Knox and Walker lay in the crib with her. She loves to play Pat-a-Cake and Row-Row-Your-Boat when we do physical therapy, more smiles. Ivey is tolerating a bottle in her mouth now. However, she will only take around 5cc from a bottle in one feeding. But it is all PROGRESS! My favorite milestone that she has finally met in the past few weeks, she stops crying when I pick her up. She and I have known one another since she was just a thought in my mind. Finally, she is letting me know she feels safe with me and that she knows I am her mom. In spite of her physical hardships, she is a very happy baby.

Ivey is a good and perfect gift from above. She is often labeled as a Special Needs Baby, and will probably have this label for the rest of her life. I think that is Great! She is special and she has needs not much different from any of ours. The difference between Ivey and me, she has the very SPECIAL ability to show all of us exactly what we NEED.

We know that In all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

Happy Birthday Ivey….4 Months and Counting….Blessings

The Blessings of a Small Town

Let me preface this Thank You letter by telling you of a decision Matt and I made the first day Ivey was born. With the uncertainty of Ivey's condition, we were given the choice by our neonatologist to transport Ivey to Atlanta or stay here in Rome. She listed the pro's and con's for being in each location. She also pointed out that our family and friends were here. Our decision was clear, we stayed. Unbeknownst to us, outside the hospital walls our family and friends were already gathering for our rescue.

Matt and I quickly discovered how fortunate we were to live in a close-knit community like Rome. For me personally, I discovered myself finding comfort in having so many people from Cedartown employed at the hospital, people who knew me. Neither town is exceptionally large; however, Rome is a substantial town compared to Cedartown. Thank heavens they are in such close proximity to one another. Thus, the blessing of small towns.

I never did appreciate the safeguard of growing up in a small town. It was the typical "Jack and Diane" song. I had many great times, most with the same group of girls that I knew before we were old enough to begin school. When I think back, I remember freezing nights cheering at football games, endless basketball seasons, and an abundance of time just trying to find something to do. Thus, the cruelty of a small town. We also found it cruel that our parents knew what we were doing - even before we did. Word gets around fast. In the end, we all went our separate ways. Now we are all in a different chapter of our lives, but we have all, for the most part, settled somewhere close to "home". As a result of Ivey's birth, I now have a new relationship with my small town. A small town never forgets who you are and it takes care of its own.

My Thank You:

While in the hospital, I received an unexpected gift of flowers from girls whom I spent most of my time growing-up. Christy, Becky, Anna, Jennifer,Tamara and I have lost touch, rarely seeing one another, but we were all bound together many years ago.

Molly was one of the first on the telephone the day Ivey was born. Lisa was there. Stacey and Brandy made their way here after years of little communication. Monica has offered her time to help whenever she is needed. Carrie has extended herself for whatever is needed.

My basketball coach, Coach Jolly, was one of the first in the hospital room. He always said we were equals with his own daughters.

Konda's son was my sister's friend - that was our connection. She held Ivey at times in the hospital when I could not physically be there. When Ivey returned to the hospital, she was the first there. Ivey still knows her voice and touch.

Kelly was Ivey's nurse this past trip to FMC. She was always "Cristen's little sister". Our years of knowing one another converged in her care for Ivey.

Haley and Robert have reached out to pull us through this, in the midst of their own family crisis.

I can't begin to express my gratitude to Asa Peek and his family. Their connection is to both Matt and I; however, his roots grow deep in Cedartown.

Steve and Nicki go without saying. They are now my neighbors, just two doors down. They have trecked across the lawns at all hours, day and night, to watch the boys, help with Ivey and just be good friends.

Thank you all from the bottom of my heart.

Christa has her own place niched in my heart. We met before grade school and have been friends since. She is present in almost every memory I have. Memories from childhood, grade school, middle school, high school, college. She stood beside me as I married Matt. She loves my children as I love hers. She knows just when to call, eventhough she is now two hours away. She knows me, skeletons and all, and loves me just the same. She is a true Friend. Thank you.

Tami stands alone. She is my living hero. She is both family and friend. I would say that I owe her the biggest thank you, but that would not be enough. For the sacred moments she and I have endured over our lifetime and especially in the past few months, I owe her my life.

I have received numerous phone calls, sweet cards and letters from "home". Each card I have put in a special place in hopes that one day I will read them to Ivey and she will understand the love that she has enveloping her. Over the course of the past few months, I have grown to appreciate my original "home", as it has embraced our family. Thank you.

I write this Thank You after I was prompted by a note I received from "home" last week. The the note is a true treasure. Thank you Nancy for your note. It has meant more to me than you will ever know.

Thus, the blessings of a small town!

Gwen

This has been a week where you sit back on Friday and think "Thank the Lord it's OVER"! Instead, I have taken a moment, (boys are at grandparents, baby asleep, and husband still at work) reflected and decided "I must be a stronger person today than I was on Monday because I am alive to tell you about it, everyone is healthy, and life is still interesting"! Here I will say,"Thank you God for giving me a life full of living!" Contrary to the previous post, I may be a little more on the insane side too!

I will give you a little overview.

Ivey

Sunday, admitted to hospital. Tooth pulled. Other small complications. Don't worry things turned out okay. Monday evening, released from hospital. Tuesday morning, appointment with orthodontist at Scottish Rite. Tuesday evening, heart monitor alarming. Again, things are okay, just a scare, but never has happened before. Wednesday, she rested. Thursday, appointment with Feeding Clinic at Scottish Rite. Friday, visit with pediatrician to summarize weeks events. Lunch with brothers, mom, Grandmother. Now sleeping peacefully.

Gwen and Matt

Let me just say this week sleep deprivation is taking over. Please do not hold us liable for things we may do or say. (or forget)

Walker and Knox

Monday, tea party for preschool. Tuesday and Wednesday, both at preschool. (Skipped naps.) Thursday, Knox at preschool, Walker had individual time with Grandad. (Walker is now spoiled!) Knox also had a play date with Cappie. (Skipped naps again.) Thursday night, spent night with grandparents.....Friday morning, back here to "help" take Ivey to pediatrician with mom and grandmother.

--Let me interrupt here to say that Knox wanted to make sure Ivey went to Dr.Rogers and not back to the hospital. Knox and Walker found this excrutiatingly boring. Walker also found out he needed a round of his vaccinations...did get shots. He will probably find "helping" with Ivey sometimes does not work to his advantage.--

Lunch. Grandmother returned to Cedartown with boys in-tow.

I could go on and on, but I won't scare you with all of the details. Let me end this by summing up all the events of the week by this one samll dialogue we had today as the boys were getting in the car to travel back to Grandmother's house.

Setting

Knox and Walker are standing in the grass and waiting to climb into Grandmother's car parked next to the curb in front of our house.

Grandmother is opening back door of car so boys can get into car seats.

Gwen: "Mom, watch your step as you turn around. A dog has pooped in the yard behind you."

Grandmother: "Okay."

Knox: "Where Mommy?"

Gwen: pointing. "Right there."

Walker: Turns. Looks. Takes a BIG step. Smiles.......................

OK, I admit this blog has turned out to be a place to go to let out some frustration, which was not its original purpose. It has also been great to meet other moms in similar circumstances. And yes, I have forgotten on occasion that there are people reading this who know Matt and I as a couple, know Matt and I as separate people, some we have not seen in years, some are family, others are friends, many are here reading because they heard of our situation, and still others are our friends that we do not see often enough. All are reading my ramblings here on the world wide web. I promise I'm not crazy....Yet.

In the beginning Tasha updated you, then it became easier for me to make postings due to the sheer fact there was so much information to sift through. At first, I wanted things sweet and to the point - no emotion involved. Somewhere in the midst of it, my emotions got the best of me. (Not to mention hormones and the three babies, all under the age of three, swarming around my feet!)

Have I mentioned that I have my own little army? Just after Ivey was born a group of friends made their way to the hospital. God sent out a battle call and the troops came for battle. My mom always said, "people will judge you by the company you keep".

-Amazing, I am actually "quoting" my mom.-

I think it may be the other way around. It's the company that keeps me.

My point is this, there is a lighter side to things around here. For example:

• Ivey has her first tooth. That's right, a tooth at three months. I have felt so guilty that nursing her didn't work out like it did with the boys, now there is a reason....Guilt is fading.
• Walker learned his ABC's.
• Walker also learned to carry his stool from the potty around the house to reach virtually anything, including the latch to open the front door (Even if I lock the wood door, Knox unlocks it for him)...If you see a cute blonde in the neighborhood, please return him.
• (Walker's new favorite toy is the cord to the vacuum cleaner....Or hair drier.
• Knox taught Walker the freedom of pee-peeing in the front yard. Sorry Mrs. Bagby.
• Knox has learned how to turn on the suction machine and suction Ivey's mouth everytime I turn my head.....He's such a great helper (do you since the sarcasm yet?)
• Knox has mastered the tool of compromise....So he thinks. For example, he told me, "Mommy, I'm going to throw my rope and hit Walker. You don't say 'NO', okay. "
• Knox loves horses. If you own a horse, have looked at a horse or ever mentioned the subject to him, you have made it to his special prayer list...You are being blessed often.
• Walker, on-the-other-hand, does not have a special prayer list. He's too busy eating. However, he will repeat Knox's prayer list at bedtime. You are blessed even more.
• When Ivey's feeding pump beeps, Knox and Walker don't even look up, they just say, "Mommy, go turn Ivey off".
• "Mom, watch this..." always ends in tears. (Dare devil boys.)
• Why do boys (of all ages) find humor in bodily functions? It's a boy thing.
• I may not be able to speak a coherent sentence if you call and I actually answer the phone, but I can repeat every line to the movie Spirit and The Man Who Shot Liberty Valance.
• And the best thing this week, Matt got his Georgia tickets in the mail yesterday....It's like Christmas around here....Go Dawgs!
• And better still, The new house may be ready in time for Walker's birthday....Maybe.

Gwen

Gwen and I spent the weekend looking for “house items” for the new house. It was nice to give Gwen a break and we certainly appreciate her mother for staying with Ivey so we could get away. We hope to move into the new house the first of next month. I have always told people I have the best family and friends any person could ever dream of having. Thank you to everyone who has helped with Ivey. While you may think that a note, prayer, phone call, or posting on the blog is a small gesture, it means a great deal to us. The support has been overwhelming and we appreciate it. The load is a lot lighter due to everyone being so generous. Thank you to all of our friends, your support has proven that we do have the best friends imaginable.

People ask me all the time how they can help. Until now, we were not sure how to respond because each day was so different. Now that Ivey has seen all of the specialist and is starting round two with most of them, we now know what to expect. Here are some things that can help us out tremendously. Most of you know that Gwen is not allowed to drive alone with Ivey. Someone else must also be in the car to help watch Ivey. So if anyone has some spare time that they could ride to the store or run errands with Gwen, it would allow her to get out of the house a little bit.

We still can not leave Ivey unless she is with a nurse or someone trained on how to take care of her. That affects Gwen much more than me because I get to go to work each day. Dropping by just to say “hello” or a phone call to give Gwen a chance to have a conversation with another adult is also a big help.

The meals have been a life saver. Not only has it helped make life easier, the food has been fantastic. While growing up, we always heard it takes a village to raise a child. Our children have already started to learn that lesson. We are just extremely fortunate to have so many great people in our village to help take care of Knox, Walker, and Ivey. Thank you for everything!!!

Matt

Thank you for taking a moment to say a prayer for Addison.

Her mom says she made it through the surgery just fine.....

I wanted to take a moment to update you on Ivey's progress. The past two weeks have been very eventful for her. In nine days she has been to the Opthamologist, Orthopedics, Feeding Clinic, Ocularist twice, Dr. Rogers three times, the cardiologist once and somewhere in there she had therapy, not to mention time keeping up with her brothers. Whew!

Her eyes are adapting to the new conformers. She also has a new addition to her mouthpiece that will begin to raise the flat side of her nose. After x-rays with orthopedics, her physician explained that her spine and hips look good. She does have some "oddities" to her sacrum bone. We will have to wait to see how her sacrum will affect her long term....crawling, walking. Ivey also received good news from her cardiologist. The heart is working well; eventhough there is a defect in her aortic valve, it does not seem to be disrupting the function of her heart. We will see him again in one year... Yeah! Ivey's latest weight, as of Wednesday, is 7 lbs 8.3 oz. Yes, she is small for a three month old, but she is slowly gaining weight. All-in-all, the past few days have been physically and mentally grueling, and there will be more to come, but she will presevere.

Ivey also received the long awaited call from the neurologist. There were several areas of concern about the structure of her brain; however, the brain LOOKS normal. He even believes that the corpus collosum is present...this is great news. Let me stress that the brain has the parts, but the FUNCTION IS STILL UNKNOWN. Ivey will be mentally challenged; the question of how severe can only be answered by patience and time. As we have said in the past, her genetic syndrome is very very rare. All other documented children with this syndrome have malformations of the brain and as a result are severly mentally retarded. The miracle here is that Ivey does not have the deformities of her brain. Endless patience, unknown increments of time, lots of love, and Prayer will be her determining factors.

Ivey is a gift from God. Every day she overwhelms and amazes me.

Thank you Dad, Miranda, Mandy and Stacy.

Much Love, Gwen

Ivey would ask that you say a special prayer for her kindred spirit, Addison and her family. Addison is twelve weeks old and will undergo open-heart surgery today. www.inthemidstofit.blogspot.com