Update on our baby girl :
I write this so family and our friends can be up to date on how baby Aurora is doing and what it is we are facing. I also write because honestly it feels good to write about her. Though it's not the best thing to hear or read she's still our little miracle and we have hope regardless of the doctors prognosis.
So on Sunday we flew into Florida to see our 3 doctors. One is our Obgyn, high risk ob, and heart specialist. First appointment with the heart doctor wasn't bad news but wasn't great news. When looking at her heart he saw everything pretty much looked the same but since she was a month older he could see a little more than last time. Still same diagnosis HLHS where her left ventricle did not form at all and she has only one pump (right) working double time to provide blood/oxygen to the entire body. The upside to that is it looks as if she has a very strong right pump and for now it is doing its job properly. He also didn't see any fluid build up around her heart which is a positve. The more concerning things seen were her left and right atrium (upper chambers of heart)where there is what is in common terms is a swinging door between the two allowing blood to flow looks like it's getting tight. He said looks like the pressure is building in the left atrium (upper left) and causing that swinging door to close what looks like it could be causing blood to back flow into her lungs with every pump. This is what he saw and really want know if or how bad it is until she's born.
The high risk ob appointment went about as good as expected. We were once again reminded how serious her condition is and chances of success from heart surgery get slimmer with many factors. Having a gentic abnormality such as turners syndrome, low birth weight, premature birth can all lower the chances of the heart surgery taking. According to the doctors and non invasive blood results are showing Aurora does seem to have Turner syndrome. The only way to be sure would be to perform a more risky test where they stick a needled through my stomach and remove amniotic fluid and have it tested. The chance of a miscarriage is 1 in 200 to 1 in 400 but doctor warned having a gentic abnormality the chances are increased. Doctor warned it may cause my water to break and have premature labor or cause an infection. Justin and I have already discussed and we can't see how the test benefits outweigh the risks so we declined.
Now at this appointment we were sat down and the doctor discussed the findings. He did see a cystic hygroma on the back of her neck which is a gathering of fluid behind her neck, he described it as not being large but it's normally seen in Turner babies and is a cause for concern. He did make the comment as it looks like a receding cystic hygroma so by his medical opinion he thinks it is going away or at least not growing. Aurora also has extra amniotic fluid she is swimming around in. Also noted and was clearly seen she has fluid behind her forehead and face as well as fluid behind the skin on her lower legs and her little feet are swollen. The doctor didn't seemed suprised by any of this because he stated this is all normal in Turner babies. The fluid can get worse which in most times is what causes fetal death or it can get better all of that is out of our control but if she's born with the fluid it is just one more obstacle for doctors as their main concern right now is her heart. We were told normally these types of pregnancies don't seem to make it full term and tend to cause preclampsia and labor may be induced if life threatening for baby and mom. The heart doctor wants a scheduled c section to have the team in place ready to operate immediately by placing a balloon in that area that looks like it's getting tight (heart catheter placed in through her leg) and then within a few days perform the open heart reconstruction surgery. The high risk ob made his opinion and doesn't think the preganacy will make it to a scheduled c section she may not survive until then or she may try to come early and the teams will just have to be ready and don't he best they can. So like I said nothing we wanted to hear but all the doctors can come to the same positve conclusion we have an active daughter. Constantly moving during each ultrasound and it's clear she's a little fighter!!!!
Now to wrap up all we know and learned from this appointment. We need to have the most ideal preganacy for her to stay in there for as long as safely possible. We need her heart to keep up with only one working pump (which right now she's doing great) we need the flow between the upper right chambers to remain open and it would be great if it would open up miraculously larger and stop what looks like blood pushing back into her lungs. We would love for her extra fluid sacs to dissappear all over and not cause any complications. Nothing the doctors said is what we want to hear and doesn't change how we feel. If anything it strengthens our faith in God to keep her strong and he will protect her. Doctors tend to lay it out there quite frankly saying most of these type cases won't make it to delivery as the body continues to try to abort naturally when there is something wrong.
I have to trust God in this and not so much the doctors words. Yes I hear them and I know her chances but outside of their medical opinions I know how awesome our God is that we all serve and he has been with Justin and us this far and he has a plan for aurora and us. What ..why?! Who knows? we continue to pray for her and our strength and we get confirmation that God's with us in the peace we have in ourselves knowing he's watching over us and above all else keep the faith he will see this through. As always we ask is prayers from everyone to pray we all keep the strength and faith. It's not easy and believe me set backs are common with me but luckily they are brief and I get right back on track after I pray and really give my worries right back over to God. Another thing is Justin he has been so strong through this and supportive of my ups and downs but he is my strength here and my shoulder to cry on and my best friend to unload the other half of my worries onto. I know God chose us to be her parents and we are blessed by that and I'm so grateful I have Justin a wonderful strong man who is helping me so much. Thanks to everyone in advance for prayers and support you'll never know what it means to us to have prayers pouring out for our daughter!
Below are the links to the 2 things I'm most talking about HLHS and Turner Syndrome for those who'd like a better insight.
http://www.cdc.gov/ncbddd/heartdefects/hlhs.html?mobile=nocontent
https://www.genome.gov/19519119
Thursday, July 16, 2015
Wednesday, June 17, 2015
Baby Lovett news
So as everyone should know we are expecting our first child. Currently I am 21 weeks along in this pregancy.
At 16 weeks we took a early gender scan to reveal we are expecting a baby girl due October 24th. She was measuring perfect and we were told she had long legs measuring about a week early.
Justin and I were both thrilled and had already chosen a name for her, Aurora Rain Lovett. We chose to keep her gender a secret until our 20 week scan just to confirm she was still a girl lol. Then have a gender reveal for everyone.
Unfortunately our 20 week appointment did not give us any good news. We were asked if we had the early testing for down syndrome and we told them no we declined because either way we'd love our child and didn't want to worry. After the nurse performed all her measurements and photos the doctor came In and said she needed to take more photos because the nurse couldn't get a good look at her heart.. after a few minutes we were told aurora had fluid behind her neck and under her skin in some areas and her femur was measuring small. They said with these indicators and not being able to get a good view of the heart that something didn't seem right to them and said aurora is showing signs of gentic abnormalities and the most likely two are turners syndrome and down syndrome. The most heart breaking was being told that with turners there was a 10% chance of survival for her.
We were sent to another specialist immediately leaving the ultrasound appointment so her heart could be viewed better and determine the issue.
Meanwhile during all these viewings of laying there looking at our baby girl on the monitor it's clear to see she is alive and has full control of her limbs. She was kicking squirming and even sucking her thumb while we peeked in on her. Her heartbeat was 152 bpm.
The cardiologist finally came in took a few more up close looks at her heart and sat us down and gave us the heartbreaking news.
Aurora was diagnosed with HLSL (Hypoplastic Left Heart Sydrome). Basically when her heart was forming her left ventricle wasn't receiving enough blood so it just didn't completely form . She has her right ventricle working but that means she has one side of her heart trying to pump blood to her entire body. For now she seems to be okay but looks as if her chamber has a lot of pressure and they are worried about a valve closing and in turn will stop pumping the blood compleltely.
There is hope that if our baby girl can hold on and stay strong and make it to delivery the doctors have a temporary fix for her. They would operate on her heart 3 times by the time she is 3-4 years of age. The first operation immediately after birth.This is very scary and super dangerous for her and the success rate for these surgeries vary 70 to 90 percent. There is no permanent fix and most people who do survive require a heart transplant later in life while some do fine with there surgeries from a young age.
I don't know what God has in his plans for our little girl and our lives but I know he has a plan for sure. It's difficult to believe anything can be wrong with your baby when you see her with a strong heartbeat and moving all around. I was crying happy tears watching the monitor seeing her move but sad to hear what her fate could be. Both doctors of course gave us the "abortion" speech and told us at this stage it's an option. However, we can't choose to end any life, if God saw fit to create this beautiful blessing then it is up to him to decide what he chooses for her. Justin nor myself will allow any doctor to take her precious life no matter how bad the odds are for her. I can't seem to grasp or understand though why she would be created to just be taken away but again that is not my call and for all I know she can be that percentage of those who survive and go on to live healthy lives. I have prayed for her in the womb since i found out we were expecting that i need God to give me the strength and everything I need to support this child while she grows inside of me and I vowed to God that she would know the Lord and we would raise her to our best abilities to have a child who loves the Lord.
Right now we are trying to cope and deal with the information as it has been given to us. Of course it's not easy on us or our families. I have prayed and cried with Justin and have had a million questions of why.. what if.. what's the future hold??.. I don't know and neither does he, everyday I'm struggling with my thoughts and emotions but I keep reminding myself and so does Justin, this is not in our control and it's out of our hands. God will get us through this. Its easy for me to give the advice to others "let go and let God" but its hard to actually do it myself during a time like this.. Hope and faith are the only things keeping us going right now but I can ask for everyone reading this please pray! Pray for strength, for our family and for little Aurora. I feel so helpless that I can't help her physically and make it all better. There are no words that will make us feel any better but we will get comfort in knowing everyone is praying and that's simply all we ask. Thank you from our family!
Tealah, Justin and Aurora ..
At 16 weeks we took a early gender scan to reveal we are expecting a baby girl due October 24th. She was measuring perfect and we were told she had long legs measuring about a week early.
Justin and I were both thrilled and had already chosen a name for her, Aurora Rain Lovett. We chose to keep her gender a secret until our 20 week scan just to confirm she was still a girl lol. Then have a gender reveal for everyone.
Unfortunately our 20 week appointment did not give us any good news. We were asked if we had the early testing for down syndrome and we told them no we declined because either way we'd love our child and didn't want to worry. After the nurse performed all her measurements and photos the doctor came In and said she needed to take more photos because the nurse couldn't get a good look at her heart.. after a few minutes we were told aurora had fluid behind her neck and under her skin in some areas and her femur was measuring small. They said with these indicators and not being able to get a good view of the heart that something didn't seem right to them and said aurora is showing signs of gentic abnormalities and the most likely two are turners syndrome and down syndrome. The most heart breaking was being told that with turners there was a 10% chance of survival for her.
We were sent to another specialist immediately leaving the ultrasound appointment so her heart could be viewed better and determine the issue.
Meanwhile during all these viewings of laying there looking at our baby girl on the monitor it's clear to see she is alive and has full control of her limbs. She was kicking squirming and even sucking her thumb while we peeked in on her. Her heartbeat was 152 bpm.
The cardiologist finally came in took a few more up close looks at her heart and sat us down and gave us the heartbreaking news.
Aurora was diagnosed with HLSL (Hypoplastic Left Heart Sydrome). Basically when her heart was forming her left ventricle wasn't receiving enough blood so it just didn't completely form . She has her right ventricle working but that means she has one side of her heart trying to pump blood to her entire body. For now she seems to be okay but looks as if her chamber has a lot of pressure and they are worried about a valve closing and in turn will stop pumping the blood compleltely.
There is hope that if our baby girl can hold on and stay strong and make it to delivery the doctors have a temporary fix for her. They would operate on her heart 3 times by the time she is 3-4 years of age. The first operation immediately after birth.This is very scary and super dangerous for her and the success rate for these surgeries vary 70 to 90 percent. There is no permanent fix and most people who do survive require a heart transplant later in life while some do fine with there surgeries from a young age.
I don't know what God has in his plans for our little girl and our lives but I know he has a plan for sure. It's difficult to believe anything can be wrong with your baby when you see her with a strong heartbeat and moving all around. I was crying happy tears watching the monitor seeing her move but sad to hear what her fate could be. Both doctors of course gave us the "abortion" speech and told us at this stage it's an option. However, we can't choose to end any life, if God saw fit to create this beautiful blessing then it is up to him to decide what he chooses for her. Justin nor myself will allow any doctor to take her precious life no matter how bad the odds are for her. I can't seem to grasp or understand though why she would be created to just be taken away but again that is not my call and for all I know she can be that percentage of those who survive and go on to live healthy lives. I have prayed for her in the womb since i found out we were expecting that i need God to give me the strength and everything I need to support this child while she grows inside of me and I vowed to God that she would know the Lord and we would raise her to our best abilities to have a child who loves the Lord.
Right now we are trying to cope and deal with the information as it has been given to us. Of course it's not easy on us or our families. I have prayed and cried with Justin and have had a million questions of why.. what if.. what's the future hold??.. I don't know and neither does he, everyday I'm struggling with my thoughts and emotions but I keep reminding myself and so does Justin, this is not in our control and it's out of our hands. God will get us through this. Its easy for me to give the advice to others "let go and let God" but its hard to actually do it myself during a time like this.. Hope and faith are the only things keeping us going right now but I can ask for everyone reading this please pray! Pray for strength, for our family and for little Aurora. I feel so helpless that I can't help her physically and make it all better. There are no words that will make us feel any better but we will get comfort in knowing everyone is praying and that's simply all we ask. Thank you from our family!
Tealah, Justin and Aurora ..
Subscribe to:
Posts (Atom)