Sunday, November 3, 2013

How is Emma Grace?

I have had many people ask me lately, how is that little miracle baby doing? Well, she is absolutely wonderful.

The Austin American Statesman contacted us to do a follow up article on Emma since her story has such a happy ending, but honestly, I am disappointed with the article. For whatever reason, the writer decided to leave out all of the answers I gave about what an incredibly difficult journey this has been, and how God has completely carried us through. You can draw your own conclusion as to why this was left out, maybe he ran out of space, but instead of dwelling on that, I just decided to write my own article.

Emma Grace is doing great. She is over 12 lbs now, making huge progress in physical therapy, holding her head up, rolling from tummy to back, smiling, laughing, and trying to talk. If it is possible, she is even happier than her big sister was at her age. But when you look at all that Emma has been through, why wouldn't she want to smile all the time?


 One of the questions I was asked from the writer was "What do you want people to take away from your story?" My answer is simple; for people to see the value in every life. I know that many people in our situation would have chosen to terminate the pregnancy, but what kind of parent would I be if I decided not to give Emma the chance to fight? She proved how strong she is, and made me a stronger mother and person in the process. I admit, this was not an easy journey at all, and the fact that I had a HUGE support system and many family members, friends, and strangers praying for all of us helped us tremendously. But the fact of the matter is, God is the only one who was with me every step of the way. During my darkest moments when I questioned why He would allow this to happen and why I had to watch our precious baby suffer, He showed me His grace. I begged Him to somehow let me take her place. I couldn't watch another family leaving the hospital with their new baby without breaking down into tears of anger and jealousy, while I went to the NICU everyday to visit Emma. Why couldn't my baby be "normal?" Looking back now, I understand why God chose us to be Emma's parents. He knew that we would choose life, and we would cheer her on during the fight. Going through something like this is a feeling that so few mothers know, and one of my biggest reasons in sharing this very personal story is to help other parents on their journeys. Surviving the very traumatic experience of the NICU is not easy, and for me, it was not possible without God. I have heard from many people how strong they think I am, but my strength comes only from the Lord. The hardest thing we had to pray was that if God was going to take Emma from us, that He would help us to see His purpose in that. Although this journey is the hardest thing we have ever been through, it is one that I will never forget, and I will never regret choosing life for Emma. Regardless of the situation you are in, I believe that every baby is God's creation, and everything He creates is for a purpose.

The other question I was asked was "When will you tell Emma the story of how she almost didn't make it?" We have already told her, and will continue to do so until she can tell it on her own. As parents, we tell each other just about everyday how blessed we are and how amazing both of our girls are. Laney Faith, our almost 18 month old, is a spunky little girl who we thought we would have trouble conceiving because of other complications, and we call her our first miracle baby. She projects so much joy, and it is impossible not to smile when she is around. Emma Grace, 4 1/2 months, is a miracle in a different way. She is a beautiful and happy little baby, with a very contagious smile. Holding a miracle in my arms everyday is a feeling that can't be duplicated. It is so very important for both of our miracle girls to know how special they are to us, our families, and especially to God. We will never be perfect parents to these girls, but one of our many goals is to tell them everyday how much they are loved, and what makes each of them so special.


Life at home couldn't be better. Laney absolutely adores her little sister, and she is anxiously awaiting the day when Emma can finally play with her. I have my hands full with these girls, but I wouldn't have it any other way. I cannot imagine being anymore blessed and I am so thankful that God has given me this life. My hardworking husband supports our family so I can stay home and raise our girls, how much better can it get? Once again, from the bottom of our hearts, thank you for praying for our family. We are enjoying the "happy ending" to our story.



Here is  a link to the article appearing in the Austin American Statesman today:

Corrections:
My husband's name is Justin, not Justice.
We found out about Emma's hydrops when I was 18 weeks pregnant, and fetal surgery was performed at 21 weeks.

http://www.mystatesman.com/news/news/local/what-ever-happened-to-the-schwartzes/nbfgD/

Thursday, September 5, 2013

Growing Girl

* Emma went to see the cardiologist last week for an ultrasound, and her lungs and heart are doing great! She still has the small hole or opening in the top septum of her heart, but that is normal for preemies and it should close on its own. If it hasn't closed by the time she is 5-6 years old she will have to have a procedure to fix it, but it is nothing to worry about now. We will go back to the cardiologist in 6 months.

* Emma also had an x-ray last week to monitor the fluid around her lungs. Good news, the amount of fluid has not increased! She will continue taking the Lasix diuretic everyday to keep the fluid out.

* Physical therapy is going great so far. Heather comes to our house once a week to work with Emma, and she has already made lots of improvements! Emma is doing great at tummy time, tracking with her eyes, reflexes, and rolling from side to tummy! Her fighting heart is very determined to succeed!

* Before Emma was discharged from the NICU, Justin and I were required to attend a discharge class. The most important thing we learned was infection and sickness prevention. Preemies are at a greater risk of catching the flu and RSV, and since the season has already started, we have to be really strict on who can hold Emma and of course washing our hands. Our parents, grandparents, and siblings are the only ones we are allowing to hold Emma right now. We really appreciate the understanding of extended family and friends. The nurses and doctors told us several times that nobody other than Justin and I should touch Emma's face or hands. Trust me, it is not easy telling our family not to touch this precious baby, but we have to do what is best for her. Bottom line, if Emma got sick, she goes straight to Dell children's, and nobody wants that to happen!

* Emma had thrush when she left the NICU but we gave her medicine and it went away quickly and her appetite returned. She is currently eating 4 oz every 4 hours. She eats at 10 pm and usually sleeps until 7 am, thank God!

After almost 8 weeks in the NICU, and only being held for an hour a day, Emma just wants to be held all the time! I can't complain, because holding one of God's miracles in my arms is an amazing feeling. Laney doesn't mind, and she loves to give her little sister hugs and kisses. Life at home with two girls is so great! Thank you for continuing to pray for Emma Grace. We are so incredibly blessed and honored that God chose us to be her parents. She is the perfect addition to our little family. Please continue to pray for her, and for Justin and I, as the emotions are still very fresh, and the medical bills are piling high. We are continuing to put our faith in God to carry us through.


Best Friends!

Thursday, August 22, 2013

Pictures

Here are a few pictures of our little miracle, Emma Grace. All pictures were taken by Adorn Photography. Please check out the website www.adornstudio.com and call Tiffany for your next photo session! Not only does Tiffany take beautiful pictures, but she is a beautiful person and has been such an encouragement to me through this journey with Emma, as she is going through a similar journey with her own little girl. Her photography is truly from the heart.






Friday, August 9, 2013

NICU Graduate!!!!

Emma Grace graduated from the NICU this afternoon! After 7 1/2 long weeks, many tears, many prayers, and many blessings, we brought our little miracle baby home! Driving away from the hospital with both of our girls in the backseat and tears in our eyes was such an incredible feeling. We cannot thank you enough for your support, encouragement, and prayers through this journey with Emma. We absolutely would not have made it through without all of you.

Emma will continue to take the diuretics daily until we follow up with the cardiologist in 3-4 weeks to see how she has progressed. She will start physical therapy in the next week or so. The main thing is, she is home, and she is healthy!

Here are a few pictures from Emma's homecoming. Her big sister Laney and our sweet dog Belle did not want to leave her side!


Ready to go home! Emma is wearing the same dress
I wore to go home from the hospital, and her big sister wore it too!
 
 
Precious girl.
 
Laney loves having a backseat buddy!
 
Belle and Laney are so excited!
 
Proud Big Sister!

Saturday, August 3, 2013

So Close!

* Emma was taken off her cannula this morning! She is breathing great and seems much happier!

* She is also bottle feeding every time starting today! Today is a big day for her, so it will take a little time to adjust and build stamina. Her feeding tube will stay in until she has been bottle feeding for 24 hours.

* Emma had another echocardiogram this week and while the hole in the top of her septum is the same size, the overall function of her heart has improved a lot so the diuretics have been helping! We will continue to give them to her until the cardiologist feels it isn't necessary anymore.

* If Emma continues on the road she is on, we are hoping to bring her home by next weekend! Words can't explain how excited we are for this news! Please pray that Emma stays strong, we are so ready to bring her home and start our lives as a family of 4!

No cannula!
 
We finally took Laney in the NICU to meet her little sister Emma for the first time!
She pet her head, then poked her in the eye. We'll have to work on that..
 
Sweet girl

Thursday, July 25, 2013

Moving Forward

* Emma has been breathing much better since taking the diuretics, which just flushed all of the fluid from her body. She is now on 1 liter of oxygen, and breathing 21%-25%. She will continue to get one dose daily of the diuretic.

* Emma had her swallow study and upper gastrointestinal study done on Tuesday, and everything came back normal! She was very close to aspirating the breast milk/formula during the swallow study, so that is something we will have to continue to monitor until she has developed more. The good news, is that she started bottle feeding again! She still has to learn the suck-swallow-breathe rhythm, but she is already pacing herself rather than me having to lean the bottle away to remind her to breathe. That is huge progress!

* They have not repeated the echo cardiogram to see if the hole in the top septum of her heart has closed yet.

* Emma is continuing to improve during her daily occupational therapy sessions. There is a wide range of "normal" muscle tone for babies Emma's age and weight, and Emma is on the lower end of that range. Because of this, she will need continued physical therapy after we come home.

At this point, the only thing keeping Emma in the NICU is learning how to feed from a bottle, and weaning from the oxygen. Come on Emma Grace, you can do it!

There are very few moms that can understand the heartache of carrying a baby in your body then being separated from them after birth for an extended amount of time. This has been a very difficult journey for Justin and I, and although we rely on God for our strength, that doesn't take away the pain of not having Emma at home with us. We are so thankful for all of the prayers, and ask that you continue to pray for Emma and our family.

Wednesday, July 17, 2013

1 Month Old

Emma is 1 month old today! It is hard to believe so much time has passed, but she has come so far! We can't wait for the day when we get to bring her home to join our family!

* Emma is done with her antibiotics, her IV is out, and her group B strep is gone! She seems to be feeling much better, but we are still not sure why her breathing is progressing so slowly. She is still on 3 liters of oxygen and receiving 25%-30% of air. There are quite a few theories as to why she is still needing oxygen support. She is receiving a diaretic to help flush out any fluid that may be around her lungs and heart. Emma has an opening in the wall between the top 2 chambers of her heart, which is normal for preemies, but it should be closing soon. If there is fluid around her heart it could be slowing down the closing process, so we are hoping the diaretic will help that. Another reason for her needing oxygen support could be that her reflux has forced some spit up into her lungs. When her oxygen support is lower, we will have a "swallow study" done and they will monitor where the formula goes into her belly and make sure everything is going to the right place.

* Emma was moved into an even bigger crib today so that she can have a mobile above her. The nurse said during her bath this morning she seemed bored so that is a great sign that she is maturing! The occupational therapist said that her muscle tone has also improved quite a bit, which is impressive since she has been so sick the past 2 weeks. Way to go, Emma!

* Emma is over 7 lbs now, and she has grown a few inches too! She is currently around the 50th percentile.

Sleeping beauty, one month old!

New crib!

Emma's battle scars: The two scars on her back are from the shunts that were put in to drain the fluid while she was still in my belly.



Tuesday, July 9, 2013

No Meningitis!

Emma Grace does NOT have meningitis! PRAISE GOD!

When I was at the hospital today Emma was awake and very alert! She has been sleepy the last week since she has been sick so it was wonderful to see her beautiful eyes again! She lost a little weight while she was sick so the doctor increased her feedings to a little over 2 ounces every 3 hours so she should start gaining weight again quickly! Hopefully in the next few days she will continue improving and they can start weaning down her oxygen again.

Thank you, everyone, from the bottom of our hearts for praying for Emma Grace and our family! God is so good!

Sunday, July 7, 2013

Fighter

It was confirmed yesterday that Emma does have Group B Strep, so she started receiving penicillin to treat it. She is already showing improvement, and the doctor was even able to turn down her oxygen support to 3 liters. This afternoon, the doctor performed the spinal tap procedure, and Emma did great during that. They gave her something called "sweeties" to make her comfortable so she wouldn't feel pain. When the doctor drew her spinal fluid out, he said it looked very clear. Usually if it has bacteria then it would be cloudy, so we have hope! We should get preliminary results back late tonight or tomorrow morning. These results will just give her white blood cell count, which are the cells that fight infections, so if it is in a normal range it should mean there is no meningitis. Justin and I got to hold Emma and love on her after the spinal tap, and she seemed very comfortable! Nothing phases this little girl, she is so strong!

If everything goes well from this point and Emma heals from her infection, the main thing keeping her in the NICU is learning how to feed from a bottle. Preemies are not physically able to grasp the rhythm of suck, swallow, breathe, so when we did try the bottle (we had to stop because her oxygen support went too high) Emma would just suck & swallow several times, then try to catch up on her breathing. I have no doubt she will be able to conquer the bottle quickly!

Thank you for your continued prayers. Even days when it is hard to find strength, I know God will provide it because all of you are praying for our family, and our precious little girl.

Friday, July 5, 2013

Prayers Needed

Prayer Warriors,
The past few days Emma's condition has been going downhill. She is needing even more oxygen support and her breathing and heart rate are dropping several times a day. The doctors believe this is due to an infection, so they drew blood and urine cultures yesterday to start testing. Her blood cultures grew bacteria within just 12 hours, confirming an infection, and the doctors believe it could be group B strep. We should have the results by Saturday. She has been on antibiotics since Thursday and is already showing improvement, but if it is group B strep, it could potentially be very dangerous, even fatal. If the bacteria is found in her spinal fluid, that means she has meningitis, and that is the most dangerous part. Nothing is certain right now, we are still waiting on the results, but please keep praying for our sweet Emma! Group B strep and meningitis can both lead to severe long term developmental disorders. Since she is showing improvement, it gives us hope that it is not serious, but there is no guarantee. Please pray for Emma, Justin and I. I am finding it hard to find strength right now. God has been so merciful throughout this journey, and we are praying this is just another little bump in the road. Thank you!

Monday, July 1, 2013

Still Cruising Along!

* Emma's feedings have increased everyday and she is now at the full amount of what babies her age and weight would eat! We try bottle feeding twice a day and last night she drank almost a full bottle! She is digesting everything and the fluid has not re-accumulated, so that is a great sign that the cause of her hydrops will not be lymphatic, which is very dangerous. We will probably never know the cause, but if the fluid never comes back that is ok! There is still a small chance it could come back and end up being lymphatic, but the chances at this point are pretty small. Praise God!!!!!

* Unfortunately, Emma was having trouble breathing the last few days so her nasal cannula is back in. Her stomach muscles are a little underdeveloped from all the fluid that was in there so the oxygen support really helps her be able to drink from the bottle. This is just a minor set back, and we are sure once she conquers the bottle she will be able to wean from the cannula and breathe on her own again.

* Emma is now in a big girl crib! She has maintained a normal temperature so she doesn't have to stay in her glass box anymore! It is so wonderful to see her in a normal bed!

That's about it for now! Emma has made HUGE progress in such a short amount of time! We are so proud of her and all that she has overcome! She is such a strong little girl already, we just know that God has BIG plans for her! Thank you for continuing to praying with us!

Emma in her big girl crib!
 
 Showing a little personality
 
 Daddy feeding Emma a bottle
 
 Snuggle time with Mommy!

Tuesday, June 25, 2013

Goodbye Oxygen Support!

* Emma is now breathing completely on her own! No more oxygen support! She seemed very happy to have the little tubes out of her nose, because she sure was smiling in her sleep a lot while I was holding her this afternoon!

Goodbye oxygen!
We will get those sticky things that held the tubes off her face during her next bath :)


* She had originally lost quite a bit of weight after the first day of draining all of the fluid in her belly, and now she is gaining it back! She weighs 5 lbs 11 oz now!

* She is now being fed 8 ml of breast milk during each feeding, and she is digesting almost all of it! They started off only giving her 2 ml, then 4 ml, so this is a big jump! 8 ml still isn't really enough to challenge her body and reveal if her feeding will cause her body to start accumulating fluid again, meaning the cause of her hydrops could be lymphatic (the dangerous diagnosis), but we are so proud of all that she has accomplished in such a short amount of time!

* Emma had an ultrasound of her head and abdomen yesterday and all results came back normal. The radiologist had originally found a spot in her brain where she might have had a bleed a few months back while still in my belly, but they are confident that it is nothing to worry about at this point. They also found a spot on her liver that may have been an enlarged blood vessel but again, nothing to worry about now!

We are so overwhelmed at all that God is doing through Emma Grace! Our hearts are overflowing with love for this precious little miracle, and of course for her big sister Laney Faith who has been such a trooper while hanging out at the hospital for hours at a time! Just about everyone who passes by comments on what a happy girl she is. She hasn't been able to meet Emma yet, but we know she will be such a great big sister!

In all of the chaos after Emma was born, I forgot to mention how God revealed himself to us just the day before I went in for my C-section. In my very first post on this blog I wrote how every time I drove to a doctor's appointment, I would hear the song "Whom Shall I Fear" by Chris Tomlin. Well, we were at church the day before Emma was born and guess what song they sang? That's right! Justin and I just smiled at each other and I couldn't help but let a few tears slip out knowing that God was speaking to us in that very moment, telling us that He was right by our side, and Emma Grace is in His mighty hands! He is so faithful!

Snuggling with mommy!

 

Sunday, June 23, 2013

More Progress, Praise God!

* Emma is off the CPAP breathing machine and only on the nasal cannula. This is just a small tube in her nose and right now she is at 3 liters and breathing 21% oxygen, same percentage that we all breathe. Once they move it down to 2 liters they will probably remove it! She hasn't had any problems breathing so far so it is only a matter of time until she is off the breathing machines completely!

* She is doing great at maintaining her body temperature so we started swaddling her today so hopefully soon she can be transferred out of her "glass box" to an open top bed!

* We started feeding Emma my breast milk through her feeding tube a few days ago but her stomach was having trouble digesting and there was a lot of yellow/green bile left in her stomach after feeding. The doctor ordered an upper gastrointestinal radiological exam to see if her stomach was rotating and flowing correctly. This was done yesterday at noon, and all of the results came back normal! Hopefully the answer to this is just that her digestive system hasn't fully matured. We started her back on feedings this morning, a smaller dosage, and she did great! There was barely any of the bile left in her stomach after a few hours. Once her body can start tolerating more and more feedings is when we will really be able to tell if her fluid starts re-accumulating, meaning the cause of her hydrops could be lymphatic, which is not good. There are ways of treating this, but of course we are continuing to pray that this is not the answer.

Justin and I are continuously overwhelmed at God's grace through this journey. We are in debt to Him, yet He is still pouring His blessings over us! We are praying that all of the glory of Emma's progress goes only to God, the ultimate healer! If you are reading this, know that we are praying for you too, and we are so thankful for you. Emma has no idea how big her fan club is!

Now that Emma is doing so great, we would like to share a few pictures with you of our little angel!

Meet Emma Grace!
 
 I can't stop staring at her sweet little face!

This was after bath time on Saturday night!
She loved when the nurse was massaging her head with shampoo!

 
During bath time, squeaky clean little girl!
 
 Daddy is already wrapped around her little finger :)

Friday, June 21, 2013

Cruising right along!

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!

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. 

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. 

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!

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"
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
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!

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.

Wednesday, March 27, 2013

Prayers Answered

Prayer is a powerful thing. I have been mocked before when sharing the good things that have happened in my heart and my life due to prayer, but until you can completely hand over your life and everything in it to God, you may not fully understand the power of prayer. My personality is the type to worry and try to control, but a few years ago I finally handed every last bit of control I was holding on to over to the Lord. It is the trials in life like this where, when we hand over everything to God and trust Him to take care of us regardless of the outcome, we see miracles performed and prayers answered. We have received hundreds of messages just letting us know that there are so many people praying for us. God heard every single one of our prayers and is continuing to answer them!

We went to see Dr. Haeri today, and he said Emma is looking as good as can be! The shunts are still in place, and we could barely see any fluid left in her belly. Her lungs have fully expanded, and her heart is still beating strong! The doctor believes it will turn out to be an issue with the lungs that was causing the hydrops, and that there shouldn't be any issues with the lungs after Emma is born. We just need to pray that the shunts stay in place for the next few weeks, because this is the most important time for lung development.

When I am 24 weeks along (after April 6), Dr. Haeri will inject me with steroids to speed up Emma's lung, brain, and intestine development. At this time, we will also meet with the head of the NICU at North Austin Medical Center so we can learn more and understand what to expect when Emma is born. Her delivery will be a scheduled C-Section around 36 weeks, because we want to make sure all of the doctors are there that need to be, and we don't want to risk me going into labor in the middle of the night.

Not only am I thankful for this miraculous turn of events, but I am also very thankful that God is continuing to carry us through this journey. Since Justin has been off work this week taking care of Laney and me, we have had some great quality time together. Also, right when our medical bills are starting to pile up, Justin was offered a better job with a pay increase. God knows exactly what is going on and what will happen in the future, and we have complete faith that He will continue to provide.

We appreciate your continued prayers for the shunts to stay in place and for Emma to stay put until she is strong enough to come out and meet us!

Friday, March 22, 2013

Home!

Emma Grace has proven she is a little fighter, and she is doing great! The nurse came in every few hours overnight to listen to her little heart beating strong! Dr. Haeri came in this morning to do an ultrasound, to make sure Emma's shunts are still in place, and to refresh my memory on the procedure last night.

Before the procedure, one nurse after another shared comments such as "You're in great hands! Dr. Haeri is the best there is." The ultrasound before the procedure showed that Emma's swallowing was being hindered by the extra fluid, so it became even more evident that we needed to do this now! We have received much confirmation that this was the right thing to do, and this was the doctor to do it.

When they got me into the operating room and looked at Emma on the ultrasound, she was in the perfect position, so the anesthesiologist quickly "drugged me" and I went right to sleep. As previously posted, it was most important to put the shunt in Emma's left side first, so it could drain the fluid from around her heart and lungs. Dr. Haeri said he was about a millimeter away from her heart (during which time everyone in the OR was holding their breaths), so once the shunt was in place he got out of there quickly and wasn't able to draw any fluid for testing. We would much rather him be safe than take an unnecessary risk. After the left shunt was in place he had to roll Emma over to do the right shunt. She is already proving to be a stubborn second born (just like her mommy!), because she didn't make it easy on the doctor, but he managed to roll her over and get the shunt in place. The next 15 minutes following the procedure were the most important, because they would be able to tell if her heart is staying strong enough and if the shunts are working and the fluid is draining properly. I was woken up with the most wonderful news: the fluid around Emma's lungs had drained, her lungs had already expanded, and her perfect little heart had moved to the correct spot. PRAISE GOD! I just laid there and wept tears of joy. Our God is SO mighty and powerful, and I am so grateful that He answered our prayers for Emma Grace. There is still fluid in her belly, but that should go away on its own, or if not, it can easily be drained after she is born. It is not anything to worry about now. We will continue to see Dr. Haeri weekly to check on Emma and to make sure she has not pulled out the shunts. By doing this procedure to insert the shunts, Emma's chances of surviving went from 15% to 70%. That is priceless!

Your continued prayers are much appreciated, as there are still complications that could arise. God has proven over and over again that He is in control, that He guided the doctor during the procedure, and that He is holding Emma in His mighty hands!

Psalm 139:13-16 

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Thursday, March 21, 2013

Emma's Procedure

PRAISE GOD! He is so faithful.

The procedure went great! Emma was in the perfect position so the doctor was able to put a shunt in both sides of her rib cage. The most important one was the left side, so the fluid could drain from around her heart. Before going to the operating room, the doctor and ultrasound technician told me they had been praying for me last night, how encouraging! After the procedure, the doctor told us that it went as well as it could have and that the fluid is already draining! He showed Justin on the ultrasound and he could tell that her belly is already smaller. They will continue to monitor Emma through the night and in the morning and if everything looks good we will go home Friday morning.

We have been overwhelmed by all of the encouraging messages and prayers. Thank you so much, from the bottom of our hearts, for storming heaven's gates with prayers for our family!

Monday, March 18, 2013

Our Next Step

We saw the doctor today and Emma's fluid levels are continuing to increase, so Justin and I have decided to move forward and have a shunt put in Emma to drain the fluid. Our doctor feels that it is better to do sooner rather than later, because this is a crucial time for Emma's lungs to form, and right now they are unable to grow because of all the fluid around the lungs. This procedure is scheduled for Thursday at 5:00 p.m. There is an overall 30% chance of something going wrong, such as breaking my water or this adding stress to Emma's heart causing her to pass away, but as parents, we want to do anything that can help  give Emma a stronger chance of surviving. If I had to deliver Emma without having a shunt put in prior, she would not survive because her lungs have not formed. The risks to me are very minimal, but they would still like to keep me in the hospital overnight to monitor me and Emma. I will also need to be on bed rest for a week after the procedure, so Justin will stay home with me and take care of Laney.

There are many hopeful things that can come from this procedure. While putting the shunt in, the doctor will also draw fluid from Emma to have tested. If any of the tests come back positive, we are closer to determining the cause to her hydrops, which means we could possibly treat her in other ways. As always, we are praying for a miracle, but if that is not in God's plan, we are praying that something would be revealed and we could find a way to treat Emma. This case is one of the most difficult for doctors, because they are unable to provide answers, but I know our answers come from God, so our job is to be patient and put all of our faith and trust in Him.

Justin and I feel so blessed to have such wonderful family, church family, and friends supporting us and praying for Emma. Our community group from Northpoint Church came to our house for 15 minutes Friday night just to lay hands on us and pray over us. These authentic relationships we have formed in the last few years have blessed our lives in so many ways, and we know God was present during that prayer time. I was also blessed this weekend to have my sister Lyndsey and one of my best friends Ashley drive down from Dallas just to be by my side and love on me during this difficult time. Justin has been such a rock for me to lean on, and I am so thankful to have such a loving and caring husband in good times and bad. God has been so faithful in our lives so trusting in Him to carry us through this comes as an easy task for us.

Thursday, March 14, 2013

A Day in Houston

The day started off with Justin and I sitting down for breakfast, reading my daily devotional, and prayer time together. It is amazing how many times and places God is speaking to us right now. The last 8 words of the devotional said exactly what we needed to hear; “Be still, and know that I am God.” Psalm 46:10

When we got to the Texas Children’s Fetal Center, we started with an anatomy ultrasound to take a look at Emma and the fluid in her belly, lungs, and face. I didn’t see much of a change since Monday, as I have gotten pretty good at reading ultrasounds at this point. It is easy to see how much fluid is in her belly right now, and the ultrasound technician said it was about 7 ounces. When you look at the ultrasound picture below of Emma's profile, her head is on the right, and all of the black space in her belly is the extra fluid. Justin and I laughed that all of the girls in our family have big bellies right now! Me, our 10-month old daughter Laney, and now little Emma. After that, we went straight to have the Fetal MRI done. Before going in, the nurse asked me what type of music I would like to listen to, and I requested Christian. I had a nice 30 minutes of praise and prayer time. For any of you that have had an MRI done, you know it is not a fun place to be if you suffer from anxiety or claustrophobia. As the machine moved me into the large tube, my prayer time started off by asking God to control my anxiety and not give me a panic attack. He answers even the smallest of prayers! After 30 minutes I was finally done and could move and breathe again. We had a short lunch break then we had a consultation with 2 doctors to go over the results of the ultrasound and the Fetal MRI. The doctors did another short ultrasound to look at Emma, and during that they shared with me that they are friends with my doctor in Austin, who had called them to make sure they took good care of me. I felt like God placed Emma and I in good hands. When we sat down to have the consultation, we didn’t quite get the answers we were hoping for, but we did get a little more hope. Unfortunately, the Fetal MRI didn’t show anything that we didn’t already know, so there are still a lot of unknown things about Emma’s case of hydrops. The doctor suggested that we stay the night and have a Fetal Echocardiogram done on Friday morning. After he called my doctor, he was reassured that the Fetal Echocardiogram I had in Austin was accurate, and all of the doctors involved were confident with the results, meaning there is absolutely nothing wrong with Emma’s heart right now. Now that we have ruled that out, our next option would be to have a shunt (just like a chest tube) put in Emma’s side to drain the fluid out. There are risks to this procedure, such as rupturing my membranes which could send me into early labor, but right now Justin and I feel that the benefits far out-weigh the risks. The doctor seemed very positive that the shunt would help out Emma’s hydrops, and even said by having this done her chance of surviving would jump up to 70%. Praise God! I have another appointment with my doctor on Monday here in Austin to check on Emma and discuss when we will have this done. There have been many cases of hydrops in the past where the fluid just disappears without any explanation, so it is never too late for a miracle!

Thank you so much for your thoughts, prayers, and encouraging messages. We are so blessed to have such wonderful family and friends to support us, and even all of the strangers who have read this blog and committed to pray. We know God has Emma in His hands, and He is so much bigger than any problems that come our way. Thank you from the bottom of our hearts, and keep praying!
 
 

Tuesday, March 12, 2013

Emma's Story

As many of you know, God is blessing us with another little girl, Emma Grace. I have created this page to keep all of our friends and family updated in one place. Here is her story.

On February 25th, the same day we found out we are having a girl, we also found out there is some extra fluid in Emma, and my doctor suggested we go to a specialist.

March 1st, we visited the specialist and they did a 45-minute ultrasound to determine what exactly was going on with Emma. The good news is, that all of her organs are working perfectly. However, the doctor found that there is extra fluid in Emma's lungs, stomach, and face, causing swelling. This is called Hydrops Fetalis. This can be very dangerous, so Justin and I decided to have an amniocentesis done to try and determine the cause. An amniocentesis is when the doctor puts a needle through my stomach to draw out some amniotic fluid, and it would determine whether it is a genetic disorder or an infection causing the hydrops. He used an ultrasound to watch Emma so he would not accidentally poke her with the needle, and she has already proved to be a fighter by kicking the needle that was invading her little home! It would take about a week to get the results back from the amniocentesis, but the doctor told us that her case was mild at this point, and gave her a 95% chance of surviving.

March 5th, the doctor wanted to do another ultrasound to see how Emma was doing, and to see if the fluid build up had progressed. The swelling in her face had gone down, but there was more  fluid around her lungs, which moved her case from mild to moderate. We received the preliminary results from the chromosome test, which meant that there were no initial signs of a chromosomal disorder, such as Down Syndrome. We were still waiting on the infectious disease results from the amniocentesis, but we were hopeful to find the cause of the hydrops, and that it would be something that could be treated.

March 11th, we got the final results from the amniocentesis, and unfortunately everything came back negative. This means there is no way to determine the cause of the hydrops, and therefore no way to fix it. There are two types of hydrops, immune and non-immune, and since there is no identifiable cause, Emma was diagnosed with non-immune hydrops. The doctor informed us that because there is no way to fix the fluid build up, the chance of Emma surviving is 10%-15%. He gave a few options that may be able to help, but not fix. He suggested that we have a Fetal MRI done, because they can see 20%-30% more than an ultrasound, and might be able to determine the cause of the hydrops. Austin does not have a specialist that does Fetal MRIs, so we will be traveling to Houston this Thursday, March 14, to have this done. If there is still no cause found, the doctor suggested that he put a chest tube in Emma. He would give me anesthesia, go in through my stomach, give Emma a shot in her arm to numb her, then insert a tube about the size of a straw between her ribs to drain the fluid. This would not fix the fluid problem, because Emma's body would still create more fluid, but it would keep draining the fluid that her body creates. The reason this would help, is that if the fluid around her lungs increases too much, it could start pressing on her heart and cause stress. It is also important because when she is born, there needs to be space for her lungs to expand so she can breathe. Another option the doctor gave, was that if her condition worsens, anytime after 24 weeks, he would admit me to the hospital and put me under intense monitoring, and when it was safe, he would deliver Emma early by C-section.

As you can imagine, our hearts are breaking. Receiving news like this is something we never expected. We walked to the car after the appointment and just sat and cried together. No words can take away the pain, but that is okay because neither of us could even find words to speak. I cannot imagine going through this without God, Justin, and our families and friends. Thankfully, God has given us both an overwhelming sense of peace. We are so incredibly blessed that we can completely rely on God to carry us through this journey. If I had to carry this heavy burden myself, I don't think I could even get out of bed every morning. I believe one of the most difficult things about being a parent is not being able to take away your child's pain, or take their place. There isn't anything we wouldn't do to heal Emma, but right now all we can do is pray and trust that God is holding our little girl in His mighty hands. Every time I have driven to and from the doctor, the song "Whom Shall I Fear (God of Angel Armies)" by Chris Tomlin has been on the radio. I have no doubt that God is using that song to constantly reassure me that He is by my side.

Our God is a big and powerful God. We know that regardless of the outcome, He will never leave our sides. We hope that you will join us in praying for a miracle for Emma Grace.


Whom Shall I Fear (God of Angel Armies)
by: Chris Tomlin

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light

Whom shall I fear
You crush the enemy
Underneath my feet
You are my Sword and Shield
Though trouble lingers still

Whom shall I fear

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side


My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory

Whom shall I fear
Whom shall I fear


And nothing formed against me shall stand
You hold the whole world in Your hands
I’m holding onto Your promises
You are faithful

Nothing formed against me shall stand
You hold the whole world in Your hands
I’m holding onto Your promises
You are faithful