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!

 

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 :)

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!

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. 

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.