In Memory of Jaxlee Adele Souza
During the first routine ultrasound their Family Doctor stated that "something didn't look quite right" and referred them to a specialist.
It took two stressful weeks, but Karah and Kyle were able to see the specialist and get a better look at what was happening with their unborn child. The technician took several photos, each showing that there was a large amount of fluid surrounding the baby. They were informed by the Pediatric Specialist that their child most likely has what is called "Turner Syndrome."
Turner's is caused by a chromosomal issue known as a monosomy - where only one of the sex chromosomes forms (only an X instead of XX or XY). The baby only has a single X chromosome. This is very rare.
They were referred to another specialist for more testing. It is confirmed that the baby has Turner's. Now the biggest concern is for the child's life. Your donation will enable Karah to receive all the medical testing and care that she and the baby need. It will facilitate the healthiest outcome for mother and child.
Our son and his wife are seeking as many prayers for their family as they can get. Here are Karah's own eloquent words about this experience on Kyle's blog. http://thetalkinggeek.com/whats-wrong-with-my-baby-turners-syndrome/
They also need financial blessings. It is critical to monitor this situation closely. The many medical tests and time off work have created unexpected medical expenses. Expenses which will only increase the longer the pregnancy continues. Still they hope for a live birth.
Thank you for your prayers for Baby Souza and her mother Karah. Your financial assistance can help this young family by relieving some of the tremendous stress in their lives. Even a small donation is greatly appreciated. Can you spare $10 for this urgent casuse? Or $100?
One week ago today our lives changed drastically. How can life be taken before a first breath? Why the life of my precious Jaxlee? Why my family? Why do we have to go through this tragedy?
222… the number of steps from the car to the check in at labor and delivery. Why did I count? Maybe it was a way to keep myself distracted from what was to come? I still don’t know. But with each and every step my worries and fears only grew larger and larger. What was to come of the next few days before, during, and after delivering my sweet and beautiful Jaxlee? Where would I stand in my faith? Would I still be strong or allow the many emotions that I know will flood my body consume me? I was going to count my steps on the way out, but I was to distracted. I wanted to make sure that I didn’t see any new mommies carrying out their perfectly healthy new babies. I just didn’t want to be made more aware of the fact that I was going home and leaving something so beautiful and precious to me behind.
She was here, and the time had with her was quick; really no amount of time would ever have been enough. We said our goodbyes to her tiny 10.5 in. 1 lbs. 5.3 oz. self, and I am surprised to say I was able to be joyful. Through all the pain and tears I was given a peace that surpasses all understanding. A peace that only my God could have allowed. I was able to look at her and smile because I know God has allowed her to be free of pain and suffering. I know she is the happiest she will ever be, and although that tears me up inside, because I want her here with me, it is what the Lord knew to be best for her.
If it weren’t for our faith, the many prayers, thoughts, and sweet words of encouragement I do believe things would have been different. I believe in the power of prayer, and I believe that because so many who love, care for and supported us in this journey have been praying for comfort and piece the Lord has granted it.
I am still sad, scared, and at times struggle with anger, and I know the coming days, weeks, months… maybe even years, will be incredibly hard for our family. Because Jaxlee is not here in the flesh does not mean that we will not carry her with us for all of the days of our lives. She is a part of our family, a part of me, and that will never change.
Dear Sweet Jaxlee,
I hope you know that even though our time together was short I have been grateful for every moment God has given me with you. You are my perfect tiny baby love and I love you beyond measure. You have made me reach out to our Lord in ways I never have before. You have made me desire Him and trust Him above all other things. I was so worried that your tiny body fighting for over 24 weeks in my womb would be in vain but you have allowed me to break out of my comfort zone and share your story and for that God has allowed my journey with you to be a testament of my faith in Him. But just because My faith in Him is stronger than it was before you does not mean it comes without fighting for. I will always find new areas of weakness but I will definitely lean more on and depend more on God because of you.
I feel like I am not allowed to cry, no one said I couldn’t in fact everyone is understanding of my grief but I find it hard to let my tears free. When I am alone I cry for you. After I got my IV removed I was excited to finally shower and have a little more freedom but that freedom came with a price. Another moment to recognize I have suffered a great loss. I got in the shower and I cried, I cried because it was not the same. You had been with me growing for 24 weeks and I miss you. My showers have always given me a moment to think, and talk to you. It was our only “time alone” together. And now I was having to say goodbye, no amount of time to say goodbye would have ever be enough. I could have held you forever in my arms but unfortunately that was not and is not possible. But you will forever be held in my heart and I will never let go of my memories of you.
I feel guilty letting my hurt get the best of me because I know I am supposed to be strong. You gave and still give me strength, and if I get upset it shows a weakness that I feel like distances me from you and our time together. As much as I would have loved for every second to be joyful with you it pains me to say that was not the case. I struggled, am struggling and will continue to struggle. I will always wonder why? Why you? These are questions I know only God knows the answer to and I will keep telling myself you were to perfect for this place. You never have to taste the temptations of this world. You never have to struggle with desires of the flesh, you never have to know sin and the struggles that come with the decisions you make. You have been made clean and get to be in the presence of the one who died for the sins of the lost, a God who saved me and will bring us together again. I look forward to the day I get to see you again. I look forward to dancing with you in the presence of the King. I love you more than any cluster of words or actions could ever express. I will forever hold you in my heart.
With all my love,
July 12, 2016
A post from Karah about Jaxlee.
Yesterday was one of the most difficult days of my life, and the sadness and fear from my appointment hangs over me like a rain cloud on the darkest of days. I feel that from this moment forward things will only get harder, but I find comfort in the Lord’s favor upon me and am so grateful He has chosen me to be a part of His eternal family. I would not be who I am today if it were not for my salvation and I would not be where I am today apart from His grace.
We stepped on the elevator headed to the second floor for an 8:30am appointment with Dr. Earhart. Kyle looked at me and asked if I was nervous and for the first time going to an ultrasound appointment I wasn’t, because I told myself the last appointment was difficult to handle and it couldn’t get much harder than that one. After sitting in the waiting room for over 30 minutes we were finally called back. We got into the room and the ultrasound tech started the scan. He took normal measurements and when he got to her heart I knew something was not right. Where I had seen her sweet heart beating before there was now no movement. The ultrasound tech kept measuring and tried to find a heartbeat three separate times with no luck. The room was quiet as I laid there in denial, surely the doctor will come in and we will see her beating and fighting heart. I turned and looked at Kyle to see if his face reflected the fear that was setting in inside of me and he remained composed which helped me to do the same. About 5 minutes after the tech said he would get Dr. Earhart she came in. She re-scanned for a forth time and verified our techs findings. Our sweet Jaxlee has passed away.
I am not ready, I am unprepared, and my heart is broken into a million pieces. I cried when I heard the words come out of our doctor’s mouth because they verified my biggest fear through this entire journey. How can this be I just felt her tiny body move while we were sitting in the waiting room? Her body is still here with me, and she doesn’t feel lifeless? The doctor informed me that because she is less than a pound and there is fluid surrounding her, it allows her body to move. I am still feeling her body today and in those movements I struggle the most. In those moments I have to reassure myself of yesterday’s findings and every time is like hearing it again for the first time.
When Dr. Earhart left the room Kyle held me and told me he was sorry for the loss of our beautiful Jaxlee. In a moment when things seemed to calm down a bit he asked me if I knew before the doctor came in the room and I said yes, he said he did as well. In those moments I can’t even express all of the thoughts and emotions that ran through my mind. I have been protecting her, I was keeping her safe in my tummy, but now she was gone and it was completely out of my control.
I have moments of selfishness where I wish I just had a minute to see her and hold her, and see her getting to have life in her little body, to get to see her live even if it was briefly because she has fought so hard. But then I think, “she is now in the hands of our savior,” He is holding her ever so tightly for me. If she were here with me, every second, minute, hour that the Lord had allowed would have been a struggle for her tiny body. The Lord has taken away her pain and suffering and that is where I need to set my focus. That is what I need to be grateful for. No suffering and no pain for my sweet girl.
the whole family
Last night we captured this moment, before I have to say goodbye on Wednesday. Yesterday I had two amazing friends graciously offer their time, energy, and talents to not only make me feel special, but to capture this pregnancy and just how beautiful it has been despite it being painful physically and emotionally. Maternity pictures were planned for the 17th, we didn’t make it. It sounded trivial and selfish but I wanted this moment, it was important to me. I needed a photo with all three of my babies and our family of 5. I can not begin to express my deepest gratitude for what Jessica and Melissa have given me. Jessica made me look and feel beautiful when I was struggling the most and Melissa captured the love, intimacy, and bond I have with my little family, Kyle, Jovi, Jaspyn and Jaxlee. These are two things I will never be able to express how thankful I am. These two women went above and beyond to accommodate a last minute photoshoot. From my hair, makeup, even getting me a dress it was exactly what I needed. Getting to see those pictures posted on my Facebook page turned a light on in my soul. The moment was captured and I believe the Lord allowed for the amazing timing to get these priceless images that I will cherish forever.
mommy and jaxlee It amazes me the peace that God has granted me in my suffering. It comes in moments, but I am praying for those moments to be more and more frequent. The Lord has granted me an amazing support system. A ton of friends and family who have and will continue to be by my side picking me up when I fall down.
I have been scheduled to deliver Jaxlee tomorrow, Wednesday at Memorial Hermann The Woodlands. And even though this day brings fear and great sadness I know it is not the end for my beautiful warrior. She has already seen the face of God and for that my grief can be replaced with relief and gratitude to our Heavenly Father.
I can not express the love I have for my sweet Jaxlee and am anxiously awaiting the day we get to see her sweet face in the presence of our Lord and Savior.
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”
“Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.”
James 1:2-4 & 12
Below is a post from my wife, Karah. As with the other recent posts from her, this has to do with our daughter Jaxlee, but unlike the other posts this one is not about a doctor’s appointment. Enjoy…
A sweet friend sent me this song and I was too busy to watch when I had received the link, but finally had a moment on my way home from Jovi’s dance class yesterday. Let me just say I am so glad that I waited until the drive home, and not on the drive to. I was an emotional mess. This song is absolutely beautiful and perfectly describes how I am feeling, seriously brings me to tears every time I hit play.
As I was listening to this song I started to cry and Jovi, in the most sincerely sweet and concerned voice said “Mommy are you starting to cry again?” That moment made me so very proud of her and her heart. I have not really ever been an emotional person (as far as letting people see that I am hurting), but this journey with Jaxlee has completely changed that. I told Jovi that I was crying, but it was ok that I was crying.
I think that it has been a lesson to me to allow my girls to see that it is ok to let people see your hurt, to let people know when you are struggling. I don’t want them to grow up thinking it’s not ok to have emotional moments when they are necessary. I don’t want them to think that they need to only work within themselves to figure things out. Talking about and expressing my feelings has been an outlet, and an opportunity to show that you can still love and serve an amazing God while going through an extremely difficult situation. I know that the Lord is growing me and my family through all of this, but I can not deny that is has been an incredible struggle.
Through all of this I have questioned, begged, pleaded, and praised God. I have a lot to be grateful for, but that does not make things any easier, unfortunately. God allows real hurt to His children, the goal is for us to trust and rely on Him EVEN in the toughest of trials. I will continue to do the best I can for my own faith, and for the faith and potential faith of those who are around me and following along in this journey with us.
Please if you have a chance listen to this song, it is nothing short of amazing.
Today has been the most devastating day during this entire pregnancy. I am trying to remind myself to be grateful for the little blessings I am able to witness and experience when it comes to Jaxlee, because they will most likely be the only things I will have to hold onto.
Today we got to see our sweet Jaxlee again, and we were told survival after she arrives is highly unlikely. Her fluid levels are not only continuing to rise but she has a large amount of fluid surrounding her heart and lungs and the pressure from this fluid will prevent her lungs from developing completely. She is a very sick baby but her heart is still fighting as hard as ever. Without lung development it will just be a matter of time when the Lord will take her after she is here, if she makes it to delivery.
Jaxlee is only measuring about 17 weeks and 5 days gestation ((length wise) which is small considering I am going on my 21st week, but this is normal with Turner Syndrome. I was also curious why I am so much larger this pregnancy than my second, and today I got that answer. The doctor told me I look about 32 weeks pregnant and just as she had predicted the massive amount of fluid surrounding Jaxlee was making her measure 32 weeks – 12 weeks larger than she actually is supposed to be. My heart breaks for her, and my heart is so heavy.
At this point as her levels continue to rise I am looking at having to have a c-section (Cesarean Section) when the time comes to deliver her. My biggest fear all along has been having to go through this pregnancy, delivering her, and dealing with everything that comes with birth and having to leave the hospital without her. Each and every appointment makes this day seem more and more real. I kept telling myself “just get her here and she will be ok.” If she can survive this pregnancy and birth she will be perfect… but without her tiny little lungs functioning properly reality is setting in. God has planned every single part of our being and there is very little our bodies can function without, this is reality. She NEEDS her lungs.
Why is it so easy, so quick to lose hope when you have worked so hard to restore it? I trust God, I trust His power, I trust his ability and I know He is a god of miracles, BUT I also know that not all prayers are answered in the way we believe is best for us. Today I am struggling with selfishness, and questioning God who I know is in control, who has not only the plans for me laid out before Him but the plans for Jaxlee as well, but it is hard to always know it. As the end result becomes more and more clear as to what will come of her life, I don’t know how to prepare myself. I know I need to be prepared, more than I am… more than I thought I was. I have known since the beginning that she only had a 1% chance of survival, but she proved to be a fighter beating the odds that were so clearly set against her. I hung on so tightly to hope, I hung on to her ability to fight and trusted that God was allowing her to fight for a purpose. A purpose that put Jaxlee in my arms and gave her a playful and full life with her sisters who love her so very much. I feel that grip I have on this hope loosening, slipping away against my will. I am allowing the stench of doubt to creep in and it is consuming me much quicker than I would ever have anticipated. I am to the point where I am begging God please…FIX me, remove my doubt, re-restore my hope! I know better, I know your word has proven to be true, and you’re capable of the healing and restoration that I am so desperate for.
This is by far the hardest post I have made. I can not even begin to express the emotions that I am experiencing, I feel like an earthquake has gone off inside of me and I don’t know where to even begin to pick up the pieces. I feel like they are all so out of control I can’t even maintain any kind of emotional normalcy. I know after getting the news we did today I should not be expected to be “normal,” but for the sake of everyone around me, maintaining some sort of “emotional stability” is important to me.
Please, please pray for my family, Jaxlee, and her health. We are forever in debt to those who have reached out to us and prayed for us and over us. We are so very grateful for each and every single one of you. Keep praying because I need those prayers today and now more than I have ever before.
For those inclined to help with the medical and other expenses related to Jaxlee and this pregnancy: https://www.gofundme.com/babysouza
It has been a long night for Karah with 12 hours induced labor. Karah as been given an epidural now. There is no way to prepare for Jaxlee to be born yet already be gone. The next moments, hours and days are going to be the hardest... Karah and Kyle have striven to be loving and supportive of each other through out this journey. A true demonstration of Grace under pressure. Thank you for continued prayer for my son's wife Karah, my son Kyle, our whole family and the medical team at Memorial Hermann. I am grateful to the team keeping Karah safe and all the donations.
I am very grateful for the outpouring of kindness from Family, Friends, Friends of Family, Friends of Friends and complete strangers. Thank you and abundant Blessings to you all.