Just a quick update on Emma's progress the last few days:
* Her breathing tube is out! They removed it Thursday morning and put her on a Nasal CPAP machine and she is doing great! The nurses are slowly weening her from that and she will probably be on a Nasal Cannula within the next few days. The CPAP is just like an oxygen mask over her nose that provides the air pressure but she breathes all on her own, and the Cannula will be just 2 little prongs in her nose so that will be much more comfortable! She is using 21% oxygen, which is the same amount that we breathe so we don't think it will be too much longer until she is off any oxygen support!
* The fluid in her belly has not re-accumulated! It could come back at anytime with no warning, so keep praying that it wont!
* We started feeding her small amounts of breast milk through her feeding tube. Last night it did not agree with her tummy and she spit it all up. The nurse has been suctioning a lot of air and mucus from her belly so that may have been the cause. They fed her a smaller portion this morning and she seemed to do much better, no spit up!
* They removed her arterial line through her umbilical cord this morning so we got to hold her for the first time! What a magical moment for both of us! She seemed very comfortable in both of our arms.
* She has been pooping a lot so that is a great sign that things are flowing correctly!
We still have a long journey ahead of us but Emma Grace is doing amazingly well! All of the doctors and nurses are surprised and excited about how well she is doing and the progress she has made in such a short amount of time! Thank you so much for praying with us!
Friday, June 21, 2013
Wednesday, June 19, 2013
Our Miracle is Here!
Emma Grace Schwartz was born at 10:28 a.m. on Monday June 17, 2013. She weighed in at 6 lbs 14 oz, and was 19 1/2 inches long. Justin and I were both crying tears of joy when we heard her first cry. That cry signified that God has answered our prayers and performed a miracle on Emma, and that we finally got to meet this little "fighter" that had been defying all the odds along this crazy journey.
After Emma's initial assessment by the doctors and nurses in the delivery room, they brought her to see me for about 10 seconds, then she was moved to the NICU where Justin got to follow and watch them get her settled. Originally, she was breathing pretty well on her own, but that afternoon the doctors decided to put a breathing tube in so her little body didn't have to work so hard to breathe. She still has the breathing tube in but they just changed her to a different machine that breathes with her instead of for her. The new machine is so much more natural so we are very excited to see how well she does. If she continues to improve, they will take the breathing tube out in the next few days and she will just be on an oxygen mask. Once the breathing tube is out and the IV line going through her umbilical cord is out, we will be able to hold her!
Overall, Emma is doing very good. It is a scary sight to see our precious girl with all of the tubes and machines, but she looks very comfortable and content. There are designated times during the day called "touch times", where Justin and I can help take her temperature, change her diaper, and hold her hands. She responds well when she hears our voices and even looks around to find our faces, and she squeezes our fingers when we put them in her tiny hands. Justin and I both feel very confident that she will be just fine. God is taking care of her and we are so thankful that he is keeping us both calm and worry-free! Not only is Emma in God's mighty hands, she is also in great hands with the wonderful nurses. We are very impressed that Emma is her nurse's only patient so she gets 24 hours of full attention and care.
Right now, our biggest concern is that Emma's body is still accumulating fluid. The neonatologist removed her shunts and drained the fluid from her belly on Monday, but it is coming back. Emma has been going through a lot of tests to find the initial cause of her hydrops, and while we haven't found the cause yet, we have been able to cross quite a few possibilities off the list. There is a chance that the cause could be idiopathic, which means there is no identifiable cause, and she could live a perfectly normal life, or she may have different effects from this down the road. There is also a very rare chance that the cause could be lymphatic, which basically means when she starts her actual feedings (she just has a feeding tube now), her body may start accumulating fluid making it very hard to breathe, and the results from this are most likely fatal. Disclaimer-I haven't had much sleep so my definitions may not be completely accurate or make much sense, but just pray that the cause is not lymphatic.
The good news, is that there is very little fluid around Emma's lungs and her heart is still very strong. The doctor started giving her protein today along with a medicine that will (hopefully) push a lot of her fluid out into her blood vessels so the fluid will end up coming out in her urine. We think this is already working because she had her biggest diaper yet full of urine!
The doctors have told us that Emma is doing much better than expected. This is great to hear, and we still have a long journey ahead of us, but we are celebrating every little victory along the way and giving all the glory to God! We aren't quite ready to share pictures of Emma publicly, as this is a very personal time for us. Thank you to every single person who has prayed for/with us, sent us encouraging messages, and shared Emma's story for others to pray. We are so blessed to have an army of prayer warriors behind us. A special thank you to both of our families who have been by our sides from the beginning, and have been such a huge encouragement and support system for us. We love you and are so thankful for you.
After Emma's initial assessment by the doctors and nurses in the delivery room, they brought her to see me for about 10 seconds, then she was moved to the NICU where Justin got to follow and watch them get her settled. Originally, she was breathing pretty well on her own, but that afternoon the doctors decided to put a breathing tube in so her little body didn't have to work so hard to breathe. She still has the breathing tube in but they just changed her to a different machine that breathes with her instead of for her. The new machine is so much more natural so we are very excited to see how well she does. If she continues to improve, they will take the breathing tube out in the next few days and she will just be on an oxygen mask. Once the breathing tube is out and the IV line going through her umbilical cord is out, we will be able to hold her!
Overall, Emma is doing very good. It is a scary sight to see our precious girl with all of the tubes and machines, but she looks very comfortable and content. There are designated times during the day called "touch times", where Justin and I can help take her temperature, change her diaper, and hold her hands. She responds well when she hears our voices and even looks around to find our faces, and she squeezes our fingers when we put them in her tiny hands. Justin and I both feel very confident that she will be just fine. God is taking care of her and we are so thankful that he is keeping us both calm and worry-free! Not only is Emma in God's mighty hands, she is also in great hands with the wonderful nurses. We are very impressed that Emma is her nurse's only patient so she gets 24 hours of full attention and care.
Right now, our biggest concern is that Emma's body is still accumulating fluid. The neonatologist removed her shunts and drained the fluid from her belly on Monday, but it is coming back. Emma has been going through a lot of tests to find the initial cause of her hydrops, and while we haven't found the cause yet, we have been able to cross quite a few possibilities off the list. There is a chance that the cause could be idiopathic, which means there is no identifiable cause, and she could live a perfectly normal life, or she may have different effects from this down the road. There is also a very rare chance that the cause could be lymphatic, which basically means when she starts her actual feedings (she just has a feeding tube now), her body may start accumulating fluid making it very hard to breathe, and the results from this are most likely fatal. Disclaimer-I haven't had much sleep so my definitions may not be completely accurate or make much sense, but just pray that the cause is not lymphatic.
The good news, is that there is very little fluid around Emma's lungs and her heart is still very strong. The doctor started giving her protein today along with a medicine that will (hopefully) push a lot of her fluid out into her blood vessels so the fluid will end up coming out in her urine. We think this is already working because she had her biggest diaper yet full of urine!
The doctors have told us that Emma is doing much better than expected. This is great to hear, and we still have a long journey ahead of us, but we are celebrating every little victory along the way and giving all the glory to God! We aren't quite ready to share pictures of Emma publicly, as this is a very personal time for us. Thank you to every single person who has prayed for/with us, sent us encouraging messages, and shared Emma's story for others to pray. We are so blessed to have an army of prayer warriors behind us. A special thank you to both of our families who have been by our sides from the beginning, and have been such a huge encouragement and support system for us. We love you and are so thankful for you.
Tuesday, June 11, 2013
Time to Meet Emma Grace!
We went to see Dr. Haeri today and there is a little more fluid in Emma's belly each week. He believes this means her shunts are reaching their end point. To avoid Emma's case becoming hydropic again with the excess fluid, swollen skin, and fluid around her lungs and heart, we all agree that it is time for Emma to make her debut! I will be 34 weeks on Saturday, so we have scheduled the C-section for next Monday June 17th, at 10 a.m. The ultrasound today measured her to be approximately 6 lbs 14 oz, which isn't completely accurate because of the small amount of fluid in her stomach, but it is close enough to know that she is a big girl!
After she is born, the neonatologists have decided to remove her shunts right away and monitor her. If the fluid returns, they will put a chest tube in her. She will be in the NICU regardless of how well she is doing, simply because they want to run tests and try to determine the initial cause of the hydrops. We all have positive feelings that she won't be in NICU very long, and she will be able to join our family at home very quickly. She has already proven to be a fighter!
The hardest part about this is there is so much unknown. We have faith that God will take care of us no matter what, but as parents, we can't help but worry a little when we have no idea what will happen with our sweet Emma Grace. We appreciate your continued prayers, and ask that you will be praying extra hard for us on Monday morning.
After she is born, the neonatologists have decided to remove her shunts right away and monitor her. If the fluid returns, they will put a chest tube in her. She will be in the NICU regardless of how well she is doing, simply because they want to run tests and try to determine the initial cause of the hydrops. We all have positive feelings that she won't be in NICU very long, and she will be able to join our family at home very quickly. She has already proven to be a fighter!
The hardest part about this is there is so much unknown. We have faith that God will take care of us no matter what, but as parents, we can't help but worry a little when we have no idea what will happen with our sweet Emma Grace. We appreciate your continued prayers, and ask that you will be praying extra hard for us on Monday morning.
Wednesday, May 15, 2013
In case you missed it, here is an article about Emma's surgery in the Austin American Statesman! We are hoping that by sharing our story it will bring awareness to all of the advances in medicine that are able to help and even save unborn children! God created every baby for a purpose, and every baby deserves the chance to fight! We know He has big plans for Emma Grace!
http://www.mystatesman.com/news/news/opinion/fetal-surgery-becoming-more-common/nXcH3/
We had another appointment yesterday to check on Emma, and no surprise, she is still doing great! Her shunts are still in place, keeping the fluid out of her chest and belly. The fluid around her has gone down a lot, which is making my breathing a little easier too. They measured her during the ultrasound and she weighs approximately 3 lbs. 15 oz., which is in the 95th percentile! She is a big girl, just like her big sister! We are still praying that she stays put until I am at least 36 weeks along, so we will schedule the C-Section for end of June or early July.
A lot of you have been asking about the shots I have to give myself daily to prevent blood clots. They are not fun by any means, but the pain only lasts a little while so it is just one more little thing I have to do to keep myself and Emma healthy!
Here is a picture of our little angel:
Thank you for continuing to pray for Emma Grace and our family. God has given us so much strength and comfort through this journey, and we are so blessed by the support and constant encouragement of our friends and family!
http://www.mystatesman.com/news/news/opinion/fetal-surgery-becoming-more-common/nXcH3/
We had another appointment yesterday to check on Emma, and no surprise, she is still doing great! Her shunts are still in place, keeping the fluid out of her chest and belly. The fluid around her has gone down a lot, which is making my breathing a little easier too. They measured her during the ultrasound and she weighs approximately 3 lbs. 15 oz., which is in the 95th percentile! She is a big girl, just like her big sister! We are still praying that she stays put until I am at least 36 weeks along, so we will schedule the C-Section for end of June or early July.
A lot of you have been asking about the shots I have to give myself daily to prevent blood clots. They are not fun by any means, but the pain only lasts a little while so it is just one more little thing I have to do to keep myself and Emma healthy!
Here is a picture of our little angel:
Thank you for continuing to pray for Emma Grace and our family. God has given us so much strength and comfort through this journey, and we are so blessed by the support and constant encouragement of our friends and family!
Monday, April 29, 2013
There Is Always Room For Hope
We had another check up today, and Emma is still doing wonderful. Her fluid levels are a little lower and the fluid around her is about the same. Dr. Haeri said that it is amazing how well my uterus is holding in all the extra fluid, and even said we can thank Laney for being such a big baby and stretching it out! The good news, is that Emma is measuring in the 97th percentile right now, so she is growing big just like her sister! There are no signs right now of pre-term labor, however, after I am 28 weeks along this weekend, the chances of my going into labor at any minute are high. I have minor contractions on a daily basis, so I still have to take it easy and not over-exert myself. It is also becoming harder to breathe with all the extra fluid. Please pray that Emma will stay put until she is healthy and strong enough to come meet us!
I wrote a few weeks ago about the "lumps" in my right foot and thigh that were believed to be clots in an artificial vein, so I had blood drawn to test and see if I am prone to get blood clots. Unfortunately, one of the genetic tests came back positive. The only reason this hasn't been caught before, is because I have always been active, but I've had to limit myself, especially while I was on bed rest. The only way for me to prevent blood clots, is for me to give myself a shot in my belly everyday with a blood thinner, at least until I recover from my C-section after Emma is born. The nurse showed me how to inject my belly today, and while I'm not too thrilled about having to do this, it is just another little bump in the road.
Yesterday at church, our awesome Pastor Buck spoke about hope, and how much it can effect our daily lives. The service ended with the song "Never Once" by Matt Redman, and I couldn't fight back the tears listening to the truth of the lyrics. It is overwhelming how much God has comforted us through this journey, and how He constantly reassures us that He is always by our sides.
"Never Once"
I wrote a few weeks ago about the "lumps" in my right foot and thigh that were believed to be clots in an artificial vein, so I had blood drawn to test and see if I am prone to get blood clots. Unfortunately, one of the genetic tests came back positive. The only reason this hasn't been caught before, is because I have always been active, but I've had to limit myself, especially while I was on bed rest. The only way for me to prevent blood clots, is for me to give myself a shot in my belly everyday with a blood thinner, at least until I recover from my C-section after Emma is born. The nurse showed me how to inject my belly today, and while I'm not too thrilled about having to do this, it is just another little bump in the road.
Yesterday at church, our awesome Pastor Buck spoke about hope, and how much it can effect our daily lives. The service ended with the song "Never Once" by Matt Redman, and I couldn't fight back the tears listening to the truth of the lyrics. It is overwhelming how much God has comforted us through this journey, and how He constantly reassures us that He is always by our sides.
"Never Once"
Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Carried by Your constant grace
Held within Your perfect peace
Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
Looking just how far we’ve come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Carried by Your constant grace
Held within Your perfect peace
Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
Wednesday, April 24, 2013
We saw Dr. Haeri again today, and Emma is still thriving like the little fighter she is! Her lungs and heart are still strong, and the shunts are still in place so there is very little fluid in her. Our main concern right now, is that the fluid around her has increased, so that raises the possibility of me going into pre-term labor. To give you an idea of how much extra fluid is around her, I am almost 27 weeks along, and my belly is measuring to be the size of 33 weeks. Because of this, I had my first steroid shot today to help Emma's organs develop faster and stronger. I will have another shot tomorrow, then the second round of shots in a few weeks. There are no risks to Emma, only benefits! After the 2nd round of steroid shots, Dr. Haeri will discuss with us the possibility of using a needle to remove some of the fluid, just like when I had the amniocentesis done. Our next big milestone is 28 weeks, because the chances of premature babies surviving goes up to 90%!
We can't put into words how much we appreciate all of your continued prayers. We have so much to be thankful for, and it all starts with my OBGYN, Dr. Michel, finding the extra fluid and referring us to Dr. Haeri. Unfortunately, there are many cases where the OB doesn't give their patient any hope, but instead just tells them the baby is going to pass away. Hydrops is a very rare disease, and the statistics show that 50% of unborn babies with hydrops do not survive. God placed us in the hands of a wonderful doctor who believes that every baby deserves a chance, and every parent deserves hope. Looking back 2 months ago when we found out there was extra fluid, and seeing how far Emma has come, defying all the odds along the way, there is no doubt that God has a very special plan for her. Sadly, there are many people that would choose to terminate their pregnancy if they were in my situation. I am thankful that my husband and I both agree that God creates every baby for a purpose, and regardless of any complications, we are going to fight for Emma's life. She proves every single day what a miracle she is!
We can't put into words how much we appreciate all of your continued prayers. We have so much to be thankful for, and it all starts with my OBGYN, Dr. Michel, finding the extra fluid and referring us to Dr. Haeri. Unfortunately, there are many cases where the OB doesn't give their patient any hope, but instead just tells them the baby is going to pass away. Hydrops is a very rare disease, and the statistics show that 50% of unborn babies with hydrops do not survive. God placed us in the hands of a wonderful doctor who believes that every baby deserves a chance, and every parent deserves hope. Looking back 2 months ago when we found out there was extra fluid, and seeing how far Emma has come, defying all the odds along the way, there is no doubt that God has a very special plan for her. Sadly, there are many people that would choose to terminate their pregnancy if they were in my situation. I am thankful that my husband and I both agree that God creates every baby for a purpose, and regardless of any complications, we are going to fight for Emma's life. She proves every single day what a miracle she is!
Tuesday, April 9, 2013
Staying Strong
We had our weekly appointment with Dr. Haeri today and Emma is doing just fabulous! Her heart and other organs are still very strong, and the shunts are still working great. The fluid around her has gone down as well, which means I am finally off bed rest! I still have to "take it easy", but I am very excited that I can hold my 11-month old daughter, Laney! Because Emma is in such great shape, there isn't a need to rush the steroid shot yet. We are going to let Emma's lungs continue to grow on their own and in a few weeks we will discuss the shot again. While I was on bed rest, I developed a lump in my right foot and thigh. Dr. Haeri is only concerned about the one in my foot, and he believes it is a clot in one of my artificial veins, so he had me get my blood drawn for testing. The main thing they want to see is if my body is prone to blood clots, and if so, I will have to start taking blood thinners. This is a pretty minor thing, but please just pray that it doesn't turn into anything else.
I know a lot of our friends and family have shared Emma's story, so if you are reading this and you don't believe in God or even miracles, you have many reasons to believe now! The fact that Emma is doing so well is a miracle in itself. God has given us peace from the moment we learned about Emma's hydrops, and He has been so faithful in answering our prayers. Thank you again, from the bottom of our hearts, for praying for our family! I wish I could thank each of you in person, but please know I have thanked God many times for all of you that are praying for us.
I know a lot of our friends and family have shared Emma's story, so if you are reading this and you don't believe in God or even miracles, you have many reasons to believe now! The fact that Emma is doing so well is a miracle in itself. God has given us peace from the moment we learned about Emma's hydrops, and He has been so faithful in answering our prayers. Thank you again, from the bottom of our hearts, for praying for our family! I wish I could thank each of you in person, but please know I have thanked God many times for all of you that are praying for us.
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