June 29, 2018 - I'm trying to find a way to begin this post without using the words "I'm not sure where to begin..." but I truthfully don't know where to begin. Today was hard. That's all there is too it.
I woke up crying, honestly at the time I was unsure why...could be stress, anxiety, fear...I was feeling all of those emotions. When I walked into the closet where Drew was getting dressed I all but collapsed into his arms. He asked why I was upset and without thinking, the words "I think we are going to get bad news today" fell out of my mouth. (To preface this, I felt strongly that we were going to get more clarity at this appointment. I had told numerous people, within the past week, that I felt like this particular appointment would give us a better understanding of what was really going on, not for any reason in particular, I just had a feeling...) I never felt like it was going to be bad news until the words spilled out of my mouth. It was like the Lord was preparing my heart for the coming hours.
The doctors office was running behind today so unlike our previous appointments we were left waiting for 45 minutes past our appointment time. With every second that passed I could feel myself growing more and more angry. I wasn't really mad about the wait...I was mad that I had to be there at all. I was mad that this is our lot. That this nightmare isn't something I can just wake up from. By the time our turn rolled around I was in tears and mentally just trying to brace myself. For what, I wasn't sure...but I could feel that something was coming.
The ultrasound technician was thorough and took her time allowing us to soak up as much of our girl as we could. We got to hear her heartbeat, see her gorgeous face in 3D and even got a glimpse of her spunky personality by the way she kept kicking the scanner. Once the ultrasound was finished the tech submitted her report and told us that the doctor would need to look over it and would be in shortly to discuss the findings.
When the doctor came in she explained that Sadie's long bones (femur and humerus) were still measuring below the 5% percentile, so even though I am over 26 weeks, her leg and arm bones are measuring around 18 weeks (all of this we knew already from previous appointments). Then she began to speak a little softer and her whole demeanor just seemed to change as she explained that Sadie's chest wasn't growing at the rate they need it to...and they are afraid her form of Dysplasia will be lethal to her shortly after birth. The doctor showed us Sadie's heart and lungs (which are growing at a normal rate) in relation to her chest bones, and explained that her bones are dwarfed and eventually her organs will run out of room and without having the ability for her lungs to fully expanded, she will not be able to breathe on her own.
That was it. That was the information I was afraid of...yet I felt was coming...
My mind began racing and my heart became immensely heavy...how do I do this, Lord? I am not strong enough. I should be planning a nursery not a funeral... Jesus, please come soon. My thoughts have changed from thinking/planning weeks or months ahead to honestly just putting one foot in front of the other right now. I am not ready to face letting her go (if that is God's will), so for now, I am cherishing every kick or movement she makes because today, she is alive.
Please do not get me wrong, I absolutely believe and trust that God can snap His fingers and heal her in an instant. We are very much praying for a miracle, but if our miracle doesn't come in the way we would hope...He is still good and He is still God.
Even So Lord, It is Well.
Friday, June 29, 2018
Saturday, June 9, 2018
Daily Struggles 6-9-2018
I'm not sure where exactly to begin...I didn't feel like getting online and writing this today but if being 100% raw and sharing my heart through this blog can possibly help someone else going through the same thing, than it is worth it.
This week I am 24 weeks pregnant. Viability week. This week is a major milestone in pregnancy because it is the week that doctors say is the earliest a baby can be born and have a decent chance of survival. I remember the relief I felt when I hit 24 weeks pregnant with Grant. Virtually all fear had subsided and I was basking in the last few months of my pregnancy, very unlike what I am feeling currently.
As each week passes I am reminded that the day is coming...the day I will give birth to our girl. I wish I knew what that day was going to look like...right now everything is up in the air. Will she be still born? Will we get to spend a few minutes/hours/days with her? Will this end up being something she can live with? None of these things we know for sure yet...hopefully as our pregnancy progresses those answers will become more clear. As of now, the 3 types of Dysplasia they are most concerned about show a life expectancy of 24 hours...How do you prepare for that? How do you let you heart become okay with knowing this baby you've already fallen in love with will be stripped away from you? It makes each new week more painful than the last. I am trying so hard to enjoy her while I have her and not worry or stress about the future but I'm human. My mind wonders. FAR. Fear sets in and I allow Satan to beat me up. Satan loves that I'm mad...he loves that I am scared...he loves that I feel guilt and worry.
Trust me, I know all of these things are not from God, in His word He has promised me He won't ever leave me nor forsake me and that His plan is greater than mine. But y'all...this road wasn't in my plan...and I don't want to have to walk it. I have told Jesus that, I have yelled at Him with tears pouring down my face...WHY!!!! What good can come of this!! Don't you know my heart?! Haven't you heard my prayers, Lord?!
With tears in their eyes, each doctor we have seen has given us the option to induce labor early... to end her life because we know that the outlook isn't good. My human sin-nature side says that would make today easier...then no one would come up to me in the grocery store and ask how far along I am...if I'm excited to have a daughter...how we plan to decorate the nursery or if we are prepared to lose sleep again having a newborn in the house. I wouldn't have to fight back the tears long enough to nod my head and hurry down the isle before they saw me lose it because I didn't feel like explaining our situation with a complete stranger. This side of Heaven, it would be easier. But Christ never said our lives in Him would be easy...
I have to surrender her life (and mine) to the Lord every. single. day. because I cannot handle this on my own. It's too much...mentally, physically, emotionally, spiritually. Thankfully, there are some days that are easier than others; the busy days where we go-go-go all day and don't come up for air, those days are distracting and good, exhausting, but good. Then there are days where I've literally cried (on my knees bawling) over spilled milk because I just couldn't take one more thing going wrong. Thankfully, Drew is sensitive to my emotions right now and steps in with paper towels and hugs often. He is such an amazing support and so strong through all of this I sometimes forget he is going through it too. It's so easy to slip into a selfish "poor me" mindset right now. I have had so many people comment "you are so brave/strong/etc" but I promise, I'M NOT...I am so far from it. I share my struggles on this blog not so that you'll feel sorry for us (at all) but so that God can be glorified and people might come to Him for strength in their own times of hurt and need. I pray that the Lord uses Sadie is such a huge way. I pray her life will honor God and further the Kingdom of Heaven more than I can even imagine! I pray that as her mom I honor her and God by openly sharing our story.
This week I am 24 weeks pregnant. Viability week. This week is a major milestone in pregnancy because it is the week that doctors say is the earliest a baby can be born and have a decent chance of survival. I remember the relief I felt when I hit 24 weeks pregnant with Grant. Virtually all fear had subsided and I was basking in the last few months of my pregnancy, very unlike what I am feeling currently.
As each week passes I am reminded that the day is coming...the day I will give birth to our girl. I wish I knew what that day was going to look like...right now everything is up in the air. Will she be still born? Will we get to spend a few minutes/hours/days with her? Will this end up being something she can live with? None of these things we know for sure yet...hopefully as our pregnancy progresses those answers will become more clear. As of now, the 3 types of Dysplasia they are most concerned about show a life expectancy of 24 hours...How do you prepare for that? How do you let you heart become okay with knowing this baby you've already fallen in love with will be stripped away from you? It makes each new week more painful than the last. I am trying so hard to enjoy her while I have her and not worry or stress about the future but I'm human. My mind wonders. FAR. Fear sets in and I allow Satan to beat me up. Satan loves that I'm mad...he loves that I am scared...he loves that I feel guilt and worry.
Trust me, I know all of these things are not from God, in His word He has promised me He won't ever leave me nor forsake me and that His plan is greater than mine. But y'all...this road wasn't in my plan...and I don't want to have to walk it. I have told Jesus that, I have yelled at Him with tears pouring down my face...WHY!!!! What good can come of this!! Don't you know my heart?! Haven't you heard my prayers, Lord?!
With tears in their eyes, each doctor we have seen has given us the option to induce labor early... to end her life because we know that the outlook isn't good. My human sin-nature side says that would make today easier...then no one would come up to me in the grocery store and ask how far along I am...if I'm excited to have a daughter...how we plan to decorate the nursery or if we are prepared to lose sleep again having a newborn in the house. I wouldn't have to fight back the tears long enough to nod my head and hurry down the isle before they saw me lose it because I didn't feel like explaining our situation with a complete stranger. This side of Heaven, it would be easier. But Christ never said our lives in Him would be easy...
I have to surrender her life (and mine) to the Lord every. single. day. because I cannot handle this on my own. It's too much...mentally, physically, emotionally, spiritually. Thankfully, there are some days that are easier than others; the busy days where we go-go-go all day and don't come up for air, those days are distracting and good, exhausting, but good. Then there are days where I've literally cried (on my knees bawling) over spilled milk because I just couldn't take one more thing going wrong. Thankfully, Drew is sensitive to my emotions right now and steps in with paper towels and hugs often. He is such an amazing support and so strong through all of this I sometimes forget he is going through it too. It's so easy to slip into a selfish "poor me" mindset right now. I have had so many people comment "you are so brave/strong/etc" but I promise, I'M NOT...I am so far from it. I share my struggles on this blog not so that you'll feel sorry for us (at all) but so that God can be glorified and people might come to Him for strength in their own times of hurt and need. I pray that the Lord uses Sadie is such a huge way. I pray her life will honor God and further the Kingdom of Heaven more than I can even imagine! I pray that as her mom I honor her and God by openly sharing our story.
Friday, June 1, 2018
Follow Up Appointment & CT Results June 1, 2018
Hey There,
I wish I had better news to share...unfortunately, our follow up didn't give much new information. Our Maternal Fetal Medicine doctor brought in a specialist that has studied Skeletal Dysplasia cases for the past 30+ years to review the CT scan and our ultrasound today to hopefully give a firm diagnosis. The specialist explained that Sadie definitely has some type of Skeletal Dysplasia, that they know for certain, but they aren't able to pinpoint exactly which type she has because she is presenting symptoms for numerous forms.
They are still unable to tell us for sure whether she will survive outside of the womb, but from what they are seeing, if she does, she will not ever have normal leg or arm function and will be wheelchair bound. (This is due to the lack of calcification in the bones of her spine and hips; as well as club foot - the doctor explained that her club foot is so severe that the top of her foot actually touches her shin...y'all this BROKE my heart). As of today, her heart, brains and lungs look normal which is great news, but if her chest growth slows and doesn't form properly her chest will not have room to support her lungs which can be fatal to her.
We left feeling overwhelmed and confused... we were really hoping this CT would provide more clarity and at least allow us to mentally prepare for what we will be facing in the coming months. I will not lie to you and say this is easy y'all. I have cried all day... cried over my girl...cried over how this will affect Grant...cried over the things mean people will say about her. I'm human and I cannot comprehend why this is happening to us or how this could possibly be used for good, but I'm learning to trust without understanding.Drew and I are both mentally and emotionally EXHAUSTED but we are leaning on God, each other and your prayers for endurance.
~Jenny
I wish I had better news to share...unfortunately, our follow up didn't give much new information. Our Maternal Fetal Medicine doctor brought in a specialist that has studied Skeletal Dysplasia cases for the past 30+ years to review the CT scan and our ultrasound today to hopefully give a firm diagnosis. The specialist explained that Sadie definitely has some type of Skeletal Dysplasia, that they know for certain, but they aren't able to pinpoint exactly which type she has because she is presenting symptoms for numerous forms.
They are still unable to tell us for sure whether she will survive outside of the womb, but from what they are seeing, if she does, she will not ever have normal leg or arm function and will be wheelchair bound. (This is due to the lack of calcification in the bones of her spine and hips; as well as club foot - the doctor explained that her club foot is so severe that the top of her foot actually touches her shin...y'all this BROKE my heart). As of today, her heart, brains and lungs look normal which is great news, but if her chest growth slows and doesn't form properly her chest will not have room to support her lungs which can be fatal to her.
We left feeling overwhelmed and confused... we were really hoping this CT would provide more clarity and at least allow us to mentally prepare for what we will be facing in the coming months. I will not lie to you and say this is easy y'all. I have cried all day... cried over my girl...cried over how this will affect Grant...cried over the things mean people will say about her. I'm human and I cannot comprehend why this is happening to us or how this could possibly be used for good, but I'm learning to trust without understanding.Drew and I are both mentally and emotionally EXHAUSTED but we are leaning on God, each other and your prayers for endurance.
~Jenny
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