Sunday, February 8, 2015

Aleah Bug

I just wanted to post an update on Aleah. There has been a lot happen in this past year. Aleah turned 7 years old! We celebrated her 7th birthday on September 10th! She also got a brand new pink wheel chair in April of 2014. She had her Scoliosis surgery in September of 2014. Since then it has been a long road to recovery but she is finally healthy and thriving. She seems to be a lot healthier since this back surgery. We are thankful and blessed that the Lord saw her through yet another surgery. The time just seems to fly by! Here are some of her 7th Birthday Pictures and a few other cute ones of her! Here are a few family pictures we had made in May 2014 and Aleah in her new wheelchair for the first time!

Sunday, May 18, 2014

A Fresh Update

Hi Everyone. I know we do not have many followers on this blog but I am hoping to change that soon. Aleah is doing well. She has had her normal run ins with being sick this winter and spring as she does every winter, spring and fall. She is doing well and therapy and continues to impress them each week with her strength. She is currently attending speech, ot and pt once every week, and we are going to start aquatic therapy with her sometime this summer. We have had a lot of appointments recently because we are transferring most of her care to doctors at Cincinnati Children's Hospital. We hear nothing but great things about the doctors in all areas there and we are getting most of her specialists switched there with the exception of cardiology and neurosurgery. Neurosurgery will most likely be switched as well to Cincy but we will keep cardiology in at Dayton Children's because we love and trust her cardiologist. This could be a very long update but to keep it short and sweet I will give the condensed version of the last few months. Aleah has been followed by an orthopedic specialist since birth. When she was three she was diagnosed with Scoliosis and we were told they would want to eventually do surgery. Last year they wanted to do surgery on her back for her scoliosis and I felt like we should give it more time. So we decided to go see an Ortho doctor at Cincy Children's and he recommended it was time to go ahead to fix her back. She is at about an 80% curvature which at this time is fully correctable. If we continue to wait it will not be fully correctable and will start to affect her lung and heart function. This is not something we want to do give the fact that she already has heart issues. We went to see her cardiologist at the beginning of May to check her heart out and get ok from him for surgery. He said her heart looked stable at this time and he felt her heart is strong enough to proceed with surgery on her back. This is the first of many pre op doctor's appointments and testing that we will have to have before she has her surgery. Her surgery will be placing the growing rods in her back along each side of her spine to help to correct the curvature. Every six months or so they will go in and place a magnet against the to grow the rods as she grows. The surgery will be a very painful and it will be a long recovery for our girl. We are trying to see the bright side of things and know that this will help her sit up and keep her from the danger of the curvature affecting her heart and lung function. Her Surgery is scheduled for August 21st so please start saying some prayers that all will go well for her. Until then we are going to go out and do as much fun stuff as we can with her this summer. We are taking a trip to the zoo next week and I will make sure to have a post all about it! Thank you in advance for all of the prayers and support for Aleah. Here are some pictures of our girl that have been taken in the last few months!

Thursday, August 15, 2013

Its been almost two years!

Well its been almost two years since my last post. Aleah will be 6 years old in a few weeks!! Its hard to believe the time has flown by and its a miracle she is here with us!! We are very thankful to God he has watched over and kept our precious Aleah and us! We are having her a hello kitty birthday party and we are so very excited to be celebrating another year with our big girl!! I got married to a wonderful man of God, Branden on December 22nd 2012 and he is so wonderful to me and wonderful with Aleah. Aleah loves him just about as much as I do!! I plan on keeping up with the blog and posting updates on a regular basis about Aleah and posting pix. here are a few pix from our wedding day enjoy!

~Love the Jones Family

Wednesday, August 17, 2011

Aleah's Mended Heart

I was a young first time mother to be, very naive about things that could go wrong with my developing baby. All I knew is how badly I wanted a baby girl. Five out of the six grand kids were boys, so I was convinced I was having a boy. I wanted a girl even more knowing this. I did everything right, took prenatal vitamins, avoided caffeine, exercised and would have never have done anything that may have harmed my baby girl. At about 13 weeks I felt her first movements and from then on I thought as along as she was moving and kicking she was ok. I was so wrong. I was 22 weeks along when my doctor scheduled my 20 week ultra sound. I thought we were going to find out the gender not knowing that this ultra sound was to diagnose possible heart defects and other anomalies that were detectable by ultrasound by the 20th week of pregnancy. We went in for the ultrasound and I asked the tech to please tell me if she could see the gender of our baby. She looked for a few minutes and then said you see those three lines there, those are girl parts. I was elated; I was having my baby girl!!! I couldn’t wait to dress her up in all the bows and frills that baby girl’s wear, but my joy would soon end. The tech looked for a few minutes more, and had me move from side to side. She said she could not get the views she needed to see the babies heart and that she was going to get the doctor to come look, being the naive person I was I didn’t even catch that hint that something terrible was wrong, but Aleah's dad did. The doctor came in and looked for a few minutes and then he said words that will haunt me for the rest of my life. Your baby has birth defects, she has “The baby has water on the brain and her heart has not developed normally”. My heart was instantly crushed and I began sobbing. My dreams of having a healthy baby girl had been shattered into pieces. How could this have happened to me, I did everything I thought I could do, I thought I had done everything right, never taken drugs or alcohol, I did everything I was supposed to do. I didn’t even have time to take in the awful news we had just received before the doctors was asking if I would consent to an amniocentesis to check for the possible cause of her defects and I agreed. I squeezed her dad’s hand and sobbed tears of sorrow as they performed this procedure. Instead of walking out with pictures of our baby girl and making happy phone calls with the happy news, we walked out with our hearts crushed and tears streaming down our faces. I will never forget the phone calls I had to make on the car ride home. Telling my family the awful news about our baby girl was almost as heart breaking as hearing it for the first time. In the weeks and months ahead were a whirlwind of doctors appointments, and fetal echo’s to access her heart. We had many meetings with doctors to develop the best plan of care for her. We were told she would die before she was born, or she would most likely die after she was born, we were told she would be a vegetable and that termination was an option we should look into. My heart was broken, I didn’t know what to expect for my baby girl. I had ultrasounds every month to see if her heart was failing and every time I tried to prepare myself for them to tell me her heart had stopped and she was gone. I was so scared as the date for my C-section approached; I had tried in every way to prepare myself to never see my baby girl alive. We didn’t even prepare a nursery it would have been too painful to have it all ready and never bring her home with us. September 10th 2007 was the day I had tried so hard to prepare myself for but just never could. My baby girl Aleah Nicole came into the world at 4:09pm. I heard no sweet first cry, and didn’t even get to see her, I heard the nurse call out it’s a girl and the time she was born and that was it. They took her away, I didnt even get to see her. The plan was to put her in the NICU in the hospital where she was born to keep her close to me, but 30 minutes after she was born the nurse came in and told me that she has stopped breathing several times and they were going to take her to the nearest children’s hospital. I never got even hold her in my arms, they brought her in the room in her little clear incubator and I got to touch her little hand for a few minutes and then they rushed her quickly out the doors. A few days later I was released so I could go be with her before she was transferred to another hospital to prepare for her first heart surgery. I will never forget the first time I got to see her. She was all covered in wires and tubes, but I thought she was so beautiful, she was my baby girl and I loved her so much. It was so bittersweet, I was so happy to see her but so heartbroken seeing my baby girl with lines going in and out of her little body and machine breathing for her. No parent should have to see their tiny newborn child like this. I didn’t get to wrap her up in a little pink blanket all warm and safe and put her in the precious little pink new born clothes, I had to see her laying there covered in wires and tubes and watch as a machine breathed for her. My heart ached for her and I wanted to just heal her little body. At three days old she was transferred to another hospital and which was two hours away from our home. We drove back and forth for a few days but then we had to find a place to stay that was close by and prepare for our baby girl to have her first open heart surgery. Over the next few days we were overwhelmed with information about our baby girls heart defects and what could be done to try and fix her little broken heart. I would sit and just cry watching my tiny new baby girl fight so hard for life. She was on a ventilator to help her breathe and had many lines and wires coming from her tiny little arms and legs. She was four days old before I was able to hold her, and I was in tears when they handed her to me for the very first time.

The first time holding her was one of the happiest moments of my life. She was so sweet and tiny and all I wanted for her was to be healthy. We relied heavily on prayer to get us through each day and prayed to God that he would keep her with us. We had an overwhelming out pour of support from our families, church families and friends. It was overwhelming to see how one baby girl could make so many get on their knees; I joked and called her a prayer celebrity. We were devastated to find out that she would have to have surgery to survive in just a few short days following her birth. She would have to have a temporary surgery to sustain her life until she was big and strong enough to undergo a full repair of her heart defects. Aleah was born with two heart defects ventricular septal defect and pulmonary atresia. Pulmonary atresia is a form of congenital heart disease in which the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs. In pulmonary atresia, a solid sheet of tissue forms where the valve opening should be, and the valve remains closed. Because of this defect, blood from the right side of the heart cannot go to the lungs to pick up oxygen. She was also born with ventricular septal defect which is a hole in between the two ventricles of the heart. At just nine days old Aleah had her very first heart surgery; I remember waking up early that day to go spend time with her before she has to go to the OR. I knew with each hour we were getting closer to handing our tiny fragile baby girl over to those surgeons and maybe never seeing her alive again. I wanted to hold her there in that rocking chair and stare at her precious little face and never let her go, the dreaded awful time came and we followed the surgical nurses to the OR to give what could be our last hugs and kisses to our precious Aleah. It seems like hours go by when you know your child is having major surgery. You jump every time someone comes through the door to give you an update not knowing if they are coming to tell you your child is gone. It agonizing to wait like that, but finally we got word she was finished and that we would be able to see her in an hour or so. Nothing I mean nothing can prepare you to see your child after having a major heart surgery. When we first walked in I was shocked at how bad she looked, it graphic terms she looked dead, lifeless, with a tons of machines pushing all types of medications into the many lines that were coming and going from her little arms, legs, feet and hands. The nurse started from her head and worked all the way down to her toes explaining all the lines and tubes she was covered in. The surgeon spoke with us and explained the surgery went well but that some babies will pass the first 72 hours after major heart operation and so we prayed this is all we could do after all our Aleah had been in God’s hand from the very start of all of this. It was very hard leaving her every night, and waiting to get that phone call that no parent wants to get, every time the phone rang my heart sank thinking this is the phone call telling us she’s gone. Our baby girl fought so hard and was so strong she overcame the odds and she made it through those first three days. Each day she continued to improve until she was able to come back to our local children’s hospital where she stayed in the NICU for another four weeks. When she came home after spending six weeks in the hospital and having a major heart operation at nine days old we were so thankful and happy to finally having her sleeping under the same roof that we were. Wow did we have a hard time adjusting to having a baby girl with so many medical needs. She had at least three doctor appointments every week and because she was so week and fragile she struggled to eat and gain weight. When she had her first heart operation we were told that she would need another heart operation between the ages of 9 months to a 1 year old to do her full repair of her heart. The day loomed in my mind, the thought of having to hand her over again not knowing if she would make it through, it weighed so heavy on my shoulders. The days and weeks passed by and when she was just seven months old it was decided that her health was deteriorating too quickly and she needed her second operation sooner than we had expected. Now I knew of some what to expect with the second surgery but that did make it any easier handing her over once again. I knew what she had been through before with her first heart operation and my heart ached at the thought of her having to recover from a second more severe heart surgery. The day came and I had to carry her to the OR doors, I wanted to turn and run away with her and keep her safe but I knew that this had to be done. It was one of the hardest things I have ever had to do. Hand over my baby girl to the surgical nurses once again and pray the surgeons would save her life. I handed her and her little frog pacifier over, gave her hugs and kisses and said goodbye. I just about collapsed there in the hallway; it was heart breaking thinking maybe she wouldn’t make it through. After several hours in surgery and the final word things went well we were able to see her. We walked in and it was the same picture, our little girl being sustained but so many machines and so many lines coming to and from her little body. We were in there about 10 minutes when alarms starting going off and the nurse went over and starting bagging her, she told the other nurse to get the doctor; my little girl was turning blue. My heart sank as I stood by her bed and just watched in horror. I prayed to God please don’t take her. They were able to get her stable and the alarms stopped and her color came back. I thought right then and there I had lost my baby girl. Once again she fought so hard and God intervened. Aleah had a much rougher time this time around. The kept her intubated for longer than normal waiting for a surgery date for her feeding tube. Many children born with congenital heart defects cannot sustain themselves by just bottle feeding because of their heart defects. Most kids have nasal gastric tubes but my Aleah could not tolerate them so they decided to put in a feeding tube in her tummy called a G-tube. She fought the vent so they had to keep her sedated with morphine until her g-tube surgery. She had her g-tube surgery four days after her heart surgery. She had been on the morphine for so long that when they tried getting her off of it she was having withdrawals; this was awful she would just scream and cry no matter what we did for her. Finally she overcame yet another of so many obstacles placed before her and with each day she became stronger. After two months in the hospital we were finally able to bring her home once again. We have been on this roller coaster ride for almost four years now, as Aleah will turn 4 years old on September 10th 2011. This life is one we would never want other parents to have to live but we are so thankful to have our little girl here with us. Aleah has taught us all to never give up hope, hope in God and hope in our prayers. Prayers of loved ones and the mercy of God is what got our little girl through all she has been through and us for that matter. God got us through the darkest of times, even when things looked hopeless. She has taught us what is most important in life and to cherish the little moments in life, appreciate each day you’re given and to never take for granted the ones you love. She makes all of us smile each day and we thank God and appreciate the simple things in life. Each day is a blessing to us and having her here is nothing short of a miracle.

Our precious Aleah now at four years old

Wednesday, October 6, 2010

A Wonderful Blessing!!!

I havent posted since Aleah's third birthday but since then I applied for Aleah to get a special wish from the make a wish foundation. I asked that she would get to go to Disney World. I just know she would love all the singing, music, disney characters and colors. I recieved a phone call on monday that Aleah got her wish!!!!! I couldnt believe what I was hearing when they were telling me on the other end.... that I would get to take my little girl to disney world!!!!! I got off the phone and said out loud thank you God!!! She has been through so much in her short three years here and she deserves this wish so much!! We havent decided yet when we will be going for sure, but we are thinking sometime in february so its not so hot in florida. It is still surreal that we get to go to disney and I cant not wait to capture all the wonderful memories we will be making there!! I dont know if I had mentioned in the last update that Aleah was getting fitted for her ankle braces and we did get to pick them up a few weeks ago. Aleah is loving school and making us smile everyday, here are some recent pictures of our little angel......

In her pretty jammies mommy got for her, they even have angel wings on the back!

Smiles for the camera!

Aleah with her new ankle braces!

Her girly ankle braces ;)

Monday, September 13, 2010

Aleah's Third Birthday!

We had a great time with Aleah on her third birthday on friday. She had a Dora party and her mammy even got her a special dress complete with a custom bow made by mommy. She got lots of toys and pretty clothes, spoiled as usual :) She even got a dog named violet for auntie Amber that talks to her while using her name, spells her name says I love you Aleah, its so neat! Heres the best news of all.....Aleah said her first word the morning of her third birthday!!! At school they were working with her on thursday, teaching her to make the mmmm sound and sign for more. Well all morning she was doing just that, making the mmm sound and signing more, and her nurse and I were sitting with her and we were talking and just like that we heard Aleah, clear as a bell speak the word MORE!!! We were both instantly crying tears of joy because we heard her speak her first word. Aleah is such a miracle and continues to inspire so many people. She loves school and is doing very well, she loves to swing and loves circle time when they sing songs. It is hard to believe she is three and I am sad that I cant technically call her my baby anymore, she is a big girl now. She is so beautiful and we are all so proud of her!!! Here are some pix of her from her birthday, Enjoy!

Her Pretty Birthday Dress!

Mommy and Me, Look how big!!!

Dora Cake

some of her presents

Aleahs cupcake ;)

Aleah and her new pal Violet

Mommy's Card to Aleah

opening the present mommy and auntie amber got her

Looking back.......I thought since Aleah was three now it would be neat to look back on how much she has changed over the last three years, here is a picture of her when she was born and a picture of her now!! Wow how much she has changed in three years!! Aleah we love you so much and you have taught us all the true meaning of love and to cherish every moment!!! Love you forever!! ~your mommy

Our Precious Baby Girl!

Im three now, I am living proof of Gods Miracles!!

Wednesday, September 1, 2010

First Day of Preschool

Well Aleah's first day went very well! To my surprise I didnt cry, she has a great teacher and her class room was very nice and clean and her nurse will be going to school with her so that gives me piece of mind. I didnt stay long but when I picked her up her teacher and her nurse said she just loved it, and had a ball! They had circle time where they sang songs and she loved hearing everyone sing, they read a book, went to gym glass and got under the big parachute, rolled the ball to eachother. Someone held Aleah while they rolled the ball to her, when they color they will even do hand over hand so that she gets to color too! She went outside and got to swing, and they found her some light up music toys, which we all know how she loves those! She even had a boyfriend already on the first day!! I guess he gave her a kiss on the arm, uh oh we are in trouble, its already starting in preschool! We will have to keep an eye on those little boys. I will be taking her tomorrow and she has no school on monday because of labor day so she will start riding the bus on tuesday. I took a few pix of her before I left so here they are, she was so happy I think she new she was going to school! More pix to come! Enjoy!

Getting ready to go to my first day of preschool!

Me on my first day of preschool! September 1st 2010