Almost one year later....
Showing posts with label Hydrops. Show all posts
Showing posts with label Hydrops. Show all posts
Thursday, April 10, 2014
Evelyn Grace Baby Dedication
In June 2013 we dedicated Evelyn Grace to the Lord at our Church, Songtan Central Baptist Church. I am posting the video of the dedication for those who were not able to attend. It brought back sweet memories to re-watch it tonight, just a few months short of one year later. We continue to praise God for Evelyn's life and don't take it for granted that she is here with us. Multiple times a day, we lift our prayers of thanksgiving to the Lord for this precious blessing who is here to enjoy life with us today. And enjoy it she most certainly does!
Wednesday, September 11, 2013
8 Months!
Dear Baby Evelyn Grace,
My how time flies! You are 8 months old this week. The Lord has blessed you with 8 months of life that have filled our hearts to overflowing and brought a new level of joy to our family.
You have an infectious smile that beams from ear to ear and scrunches up your precious cheeks and little nose. You are healthy and full of chunks that we love to squish with kisses. Your precious little hands and feet are reaching to touch everything these days. Your hair has started really growing. You are a very inquisitive little girl, observant and noticing everything. You take it all in, you notice the little things and see the changes - new earrings, a different necklace, a new crumb fallen to the floor, the ways the little balls are attached to the toy, when someone new walks into the room or if someone walks out, if there is a tag on something you will find it.....
Your favorite person in the whole entire world is your brother. Oh how your eyes light up when he comes bounding in. He can get smiles through your tears, he makes you giggle harder than anyone (except maybe your Daddy), and you watch him intently. Now that you are more and more mobile, you like to scoot over to him and play with whatever he is playing with....You just can't get enough of your "bra bra." We refer to him as "Brother" often and recently you have started very obviously calling him. He is overjoyed that, "She knows my name!!!!"
You have 2 little bottom teeth now and have started taking some bites of "real" food these past weeks - avocado, a little apple and sweet potatoes. You love your sweet potatoes, promptly reminding me to give you "more please." You love to drink out of real cups (and can do it fairly well on your own, surprisingly).
You love your bath time, your stacking cups, and splash splash splashing. Your favorite toy is our Little People barn and farm animals. You seem to enjoy "planking" and "doing push ups" or at least you find yourself doing them often....
Today I met someone who I didn't know and she introduced herself as having prayed for you back in January. It brought immediate tears to my eyes. I love that. So many people have prayed for you - and here you are! Enjoying your 8th month of life BECAUSE OF THOSE VERY PRAYERS and because God answered. Enjoy it sweet Baby Girl. Enjoy every moment. We sure are and we soak it up - soak you up - every last smooshy beautiful smiley second we can breathe in.
We love you.
Always and Forever, Mama, Dada and BraBra
My how time flies! You are 8 months old this week. The Lord has blessed you with 8 months of life that have filled our hearts to overflowing and brought a new level of joy to our family.
You have an infectious smile that beams from ear to ear and scrunches up your precious cheeks and little nose. You are healthy and full of chunks that we love to squish with kisses. Your precious little hands and feet are reaching to touch everything these days. Your hair has started really growing. You are a very inquisitive little girl, observant and noticing everything. You take it all in, you notice the little things and see the changes - new earrings, a different necklace, a new crumb fallen to the floor, the ways the little balls are attached to the toy, when someone new walks into the room or if someone walks out, if there is a tag on something you will find it.....
Your favorite person in the whole entire world is your brother. Oh how your eyes light up when he comes bounding in. He can get smiles through your tears, he makes you giggle harder than anyone (except maybe your Daddy), and you watch him intently. Now that you are more and more mobile, you like to scoot over to him and play with whatever he is playing with....You just can't get enough of your "bra bra." We refer to him as "Brother" often and recently you have started very obviously calling him. He is overjoyed that, "She knows my name!!!!"
You have 2 little bottom teeth now and have started taking some bites of "real" food these past weeks - avocado, a little apple and sweet potatoes. You love your sweet potatoes, promptly reminding me to give you "more please." You love to drink out of real cups (and can do it fairly well on your own, surprisingly).
You love your bath time, your stacking cups, and splash splash splashing. Your favorite toy is our Little People barn and farm animals. You seem to enjoy "planking" and "doing push ups" or at least you find yourself doing them often....
Today I met someone who I didn't know and she introduced herself as having prayed for you back in January. It brought immediate tears to my eyes. I love that. So many people have prayed for you - and here you are! Enjoying your 8th month of life BECAUSE OF THOSE VERY PRAYERS and because God answered. Enjoy it sweet Baby Girl. Enjoy every moment. We sure are and we soak it up - soak you up - every last smooshy beautiful smiley second we can breathe in.
We love you.
Always and Forever, Mama, Dada and BraBra
Wednesday, August 28, 2013
What's in a name?
One thing about me: I love names. I like to ask people's middle names, I love finding out what a new baby's name is and I find the process of naming children to be a hugely important, fun and a little bit stressful too! I have found most parents have some type of "guidelines" they go by when naming their babies....some like uncommon names, some like family names, some like to make up their own names, others like Biblical names and so forth. For us, we like traditional/"older" names, we really love the meaning behind names and we prefer names that are less common without being too "out there."
When we found out we were pregnant with our second, we immediately started talking names but waited until we found out she was a girl before really pursuing it. When we were pregnant with Caleb we had a long list of girl names we liked and struggled with finding boy names....but now that we were pregnant with a girl we decided we didn't like most of those names anymore! There were a few we still really liked but for some reason they just didn't feel "right" this time. They were names we might very well use again but neither of us felt like they were "it" for this baby. We had the distinct feeling that she needed a special name.
One day (I remember very clearly), I was riding the Nambu bus up to Mediflower Birthing Center (where we were planning to have a beautiful water birth) and I was thinking of what her name would be.....I realized that we hadn't prayed about it so I prayed and asked the Lord to help us figure out what the "right" name was supposed to be. Literally as soon as I finished praying, the name "Evelyn" came to my mind. At the time, I didn't connect it with the prayer, just thought - "hm. That's a really pretty name! I've never thought of that before. I wonder what it means?" Evelyn was not a name that either of us had ever talked about or thought about before that prayer.
When I got home, I looked it up and found it meant "Life" or "Life giving." I really liked that. It was a beautiful, very girly name, it had a meaning I really liked....now what would Steve think? I decided to wait and see if he would come across it on his own. I didn't want him to just go with it because I liked it. So I played cool. Several weeks later, I casually added it to the growing list of "maybe" names we had started. He didn't say anything or seem very "wow-ed." So I let it go. I waited and secretly kind of hoped he would decide he really liked it too. We kept adding to our list and talking about it.
Fast forward to end of November (I was "due" in February) and we were getting ready to head to the States for my sister-in-love's wedding. Still no name. We both hoped to table the discussion and maybe come to a conclusion later. While I was gone, Steve told me "I think I've decided on a name" I was curious because Evelyn was still my top choice. He wanted to wait to tell me until he got to the States. And I made him go first because I didn't want him to change his mind based on my answer.
His top name choice? Evelyn. :)
Now to find a middle name!
Fast forward again. We arrived back in Korea January 1, 2013 (almost one month before her guess date). Two days later I was in the hospital and we were facing one of the scariest times of our lives. We had learned a new vocab word: Hydrops. And our baby's life was in danger. Then my health began to also deteriorate from her condition.
And then she sat in the NICU, fighting for her LIFE. The whole experience was the hardest thing we have faced as a married couple, possibly the hardest thing we have ever faced, period.
It meant "life" and as we prayed and cried and sat in suspense, awaiting doctor reports and more testing, we clung to her name like a promise from the Lord. The story of how that name came about offered us some measure of hope. Months before, the Lord had known and I believe had answered that prayer: This child will have life.
We didn't know at the time if that meant eternal life with her Maker or if that included physical life here on Earth with us, but it gave us hope. And we clung to it in those frightening days and weeks. The Lord had named her Evelyn and He had a plan and held her in His Hands.
There were several middle names we had thought about but Steve decided in the hospital that Grace would be fitting - knowing that any outcome would be "God's Grace", and praying that He would grant her grace as she fought for her life.
And now that she is healthy and the Lord has graciously granted her 7 months of LIFE, we pray that she will grow to be a gracious woman, marked by His grace and that one day she will be given new life, as a new creation in the Lord. As my favorite blogger frequently reminds us, "All's Grace"
When we found out we were pregnant with our second, we immediately started talking names but waited until we found out she was a girl before really pursuing it. When we were pregnant with Caleb we had a long list of girl names we liked and struggled with finding boy names....but now that we were pregnant with a girl we decided we didn't like most of those names anymore! There were a few we still really liked but for some reason they just didn't feel "right" this time. They were names we might very well use again but neither of us felt like they were "it" for this baby. We had the distinct feeling that she needed a special name.
One day (I remember very clearly), I was riding the Nambu bus up to Mediflower Birthing Center (where we were planning to have a beautiful water birth) and I was thinking of what her name would be.....I realized that we hadn't prayed about it so I prayed and asked the Lord to help us figure out what the "right" name was supposed to be. Literally as soon as I finished praying, the name "Evelyn" came to my mind. At the time, I didn't connect it with the prayer, just thought - "hm. That's a really pretty name! I've never thought of that before. I wonder what it means?" Evelyn was not a name that either of us had ever talked about or thought about before that prayer.
When I got home, I looked it up and found it meant "Life" or "Life giving." I really liked that. It was a beautiful, very girly name, it had a meaning I really liked....now what would Steve think? I decided to wait and see if he would come across it on his own. I didn't want him to just go with it because I liked it. So I played cool. Several weeks later, I casually added it to the growing list of "maybe" names we had started. He didn't say anything or seem very "wow-ed." So I let it go. I waited and secretly kind of hoped he would decide he really liked it too. We kept adding to our list and talking about it.
Fast forward to end of November (I was "due" in February) and we were getting ready to head to the States for my sister-in-love's wedding. Still no name. We both hoped to table the discussion and maybe come to a conclusion later. While I was gone, Steve told me "I think I've decided on a name" I was curious because Evelyn was still my top choice. He wanted to wait to tell me until he got to the States. And I made him go first because I didn't want him to change his mind based on my answer.
His top name choice? Evelyn. :)
Now to find a middle name!
Fast forward again. We arrived back in Korea January 1, 2013 (almost one month before her guess date). Two days later I was in the hospital and we were facing one of the scariest times of our lives. We had learned a new vocab word: Hydrops. And our baby's life was in danger. Then my health began to also deteriorate from her condition.
And we had to get her out. Fast.
And Evelyn was the perfect name.
It meant "life" and as we prayed and cried and sat in suspense, awaiting doctor reports and more testing, we clung to her name like a promise from the Lord. The story of how that name came about offered us some measure of hope. Months before, the Lord had known and I believe had answered that prayer: This child will have life.
We didn't know at the time if that meant eternal life with her Maker or if that included physical life here on Earth with us, but it gave us hope. And we clung to it in those frightening days and weeks. The Lord had named her Evelyn and He had a plan and held her in His Hands.
There were several middle names we had thought about but Steve decided in the hospital that Grace would be fitting - knowing that any outcome would be "God's Grace", and praying that He would grant her grace as she fought for her life.
Evelyn Grace.
It was perfect. Fitting. Her name.
And now that she is healthy and the Lord has graciously granted her 7 months of LIFE, we pray that she will grow to be a gracious woman, marked by His grace and that one day she will be given new life, as a new creation in the Lord. As my favorite blogger frequently reminds us, "All's Grace"
*************
For those of you asking, yes, I do like calling her "Evelyn Grace." I love the tradition in the South to frequently use both first and middle names and I think it is a beautiful testimony to her story. Do I always refer to her as "Evelyn Grace"? No. Do you have to? Not if you don't want to! Do I love it and will we continue to use it and would we love for you to join us in that? Yes!
Monday, February 25, 2013
Sending Spring
I don't know about you, but around these parts (Songtan, South Korea) I am getting good and ready for SPRING! We are longing for days to run outside {unbundled} and enjoy the parks, trails and our rooftop. We miss taking walks and enjoying the sunshine.
In the midst of longing for warmer days....
Sending some spring your way.
Sunday, February 10, 2013
Our little "Miracle Baby"
Evelyn Grace turned 1 month old this week (I can't wait to post pics soon of her beautiful baby shower that several good friends threw to celebrate her life)! We are overwhelmed with gratitude as we snuggle, kiss, hold or see her little chest moving up and down.
We have had several follow up doctor appointments since leaving the hospital and so far, she continues to amaze the doctors and seems to be healthy and doing well. We praise God.
Her chest xrays keep coming back clear, her breathing is strong, her heart is good, her blood work is normal. She tested negative on all the genetic testing we got back, outruling any genetic or chromosomal abnormalities as being the "cause" of the Hydrops. She tested negative for GBS and negative for any viruses. It doesn't appear at this time that she has any long term condition or effects from this condition. We will continue to monitor her at home and she will go in for monthly follow up doctor visits in the upcoming months to continue to check her and monitoring her. We won't know until she begins to develop if there are any ramifications from the lack of oxygen or treatment of the Hydrops but the doctor doesn't seem to think that will be an issue (although he says we should watch for signs of it) and she gives no indications at the moment of anything. She continues to struggle with nursing, some days being better and then other days being worse again. She is growing though (and is fitting her newborn clothes a littel better!) so that is great news and we continue patiently (or sometimes not so patiently) plugging away at it. Thank you to those praying for this specifically, please continue!
We are adjusting well to being a family of 4....Caleb ignores her for the most part, worries about her if she cries, asks about her whereabouts if he doesn't see her in my arms, wants her to sleep in his bed and be his teddy bear, and several times a day will run over to us and shower her with kisses and "I love you Baby Sister!!!" He doesn't seem to be very jealous or affected by the change. His life of imagination and energy just keeps on going! I'm continuing to heal from surgery and find a ryhthm of life and ministry with two kiddos. I'm enjoying this newborn stage much more the second time around, and soaking it up knowing it doesn't last very long! She is an excellent sleeper (unlike her brother!) and sleeps through the night most nights, takes long 3 hour naps throughout the day and seems generally content for the most part. She has started to "wake up" a little more now that she is "full term" and we've heard some sweet little cries that are just way too precious and enjoy seeing her eyes during her quiet alert state. We are totally in love and so happy to be home, as a family, all together. Thank you again for your many many prayers and continued prayers and love through this time. We feel very blessed.
 |
| 1 Month old! |
Her chest xrays keep coming back clear, her breathing is strong, her heart is good, her blood work is normal. She tested negative on all the genetic testing we got back, outruling any genetic or chromosomal abnormalities as being the "cause" of the Hydrops. She tested negative for GBS and negative for any viruses. It doesn't appear at this time that she has any long term condition or effects from this condition. We will continue to monitor her at home and she will go in for monthly follow up doctor visits in the upcoming months to continue to check her and monitoring her. We won't know until she begins to develop if there are any ramifications from the lack of oxygen or treatment of the Hydrops but the doctor doesn't seem to think that will be an issue (although he says we should watch for signs of it) and she gives no indications at the moment of anything. She continues to struggle with nursing, some days being better and then other days being worse again. She is growing though (and is fitting her newborn clothes a littel better!) so that is great news and we continue patiently (or sometimes not so patiently) plugging away at it. Thank you to those praying for this specifically, please continue!
We are adjusting well to being a family of 4....Caleb ignores her for the most part, worries about her if she cries, asks about her whereabouts if he doesn't see her in my arms, wants her to sleep in his bed and be his teddy bear, and several times a day will run over to us and shower her with kisses and "I love you Baby Sister!!!" He doesn't seem to be very jealous or affected by the change. His life of imagination and energy just keeps on going! I'm continuing to heal from surgery and find a ryhthm of life and ministry with two kiddos. I'm enjoying this newborn stage much more the second time around, and soaking it up knowing it doesn't last very long! She is an excellent sleeper (unlike her brother!) and sleeps through the night most nights, takes long 3 hour naps throughout the day and seems generally content for the most part. She has started to "wake up" a little more now that she is "full term" and we've heard some sweet little cries that are just way too precious and enjoy seeing her eyes during her quiet alert state. We are totally in love and so happy to be home, as a family, all together. Thank you again for your many many prayers and continued prayers and love through this time. We feel very blessed.
Thursday, January 31, 2013
My Arms Are Full!
I have to apologize for my lack of posts and updates but really I'm not apologizing at all. The reason for my week-long absence is that EVELYN GRACE CAME HOME!! As in, to our house and we get to keep her for always. I'm so happy.
It all came about very suddenly. She had been moved to the "normal nursery" and her doctors told us they were talking about when to release her but nothing had been determined and they were continuing to observe her. I "happened" to call the nursery Thursday morning (she's been home for one week today!!) and they said "oh, she discharge-y (that's Konglish for discharge) today, now!" I couldn't believe what I was hearing! Caleb started running around jumping up and down and chanting "Baby sister's coming home - yay yay yay!" and I called Steve at work to tell him we needed to leave and pick up our baby girl! We scrambled around gathering clothes, carseat, etc and had to run to the bank to wire transfer money to pay her bill (in Korea they don't offer payment plans, you have to pay your entire bill before you leave. Thankfully, Korean National Insurance covers NICU stays fairly well....the actual birth was not covered much but her stay in the NICU was well covered) and we got up there as fast as we possibly could!
It all came about very suddenly. She had been moved to the "normal nursery" and her doctors told us they were talking about when to release her but nothing had been determined and they were continuing to observe her. I "happened" to call the nursery Thursday morning (she's been home for one week today!!) and they said "oh, she discharge-y (that's Konglish for discharge) today, now!" I couldn't believe what I was hearing! Caleb started running around jumping up and down and chanting "Baby sister's coming home - yay yay yay!" and I called Steve at work to tell him we needed to leave and pick up our baby girl! We scrambled around gathering clothes, carseat, etc and had to run to the bank to wire transfer money to pay her bill (in Korea they don't offer payment plans, you have to pay your entire bill before you leave. Thankfully, Korean National Insurance covers NICU stays fairly well....the actual birth was not covered much but her stay in the NICU was well covered) and we got up there as fast as we possibly could!
We met with one of Evelyn Grace's doctors (Dr. Choi) and he reveiwed her case with us and told us what to watch for at home and how to care for her holes on the side of her chest where her tubes were while they heal. In the end, our case is one like many other Hydrops cases - despite extensive testing they were unable to find a "cause" for the Hydrops but it appears to have self-healed and now that she is breathing, her lungs matured and her fluid has been drained, she seems like a healthy preemie. Although we can expect her to be slightly delayed developmentally for the first yea or so due to being early and spending time in NICU, at this time they can't detect any long term issues as a result of the Hydrops. They will continue to monitor her but for now, things look really really good. Praise the Lord! We are so thankful to Him and also to the doctors and nurses who cared for her at Asan Medical Center.
When I unzipped Baby Girl's carseat, I found this fun surprise: Steve and Caleb bought us girls a matching mommy and baby girl bunny set - one for me and one for her (her special "lovie"). It was a really fun little surprise :) Thanks, Guys!
Bustin' her outta there!!!! Oh happy day!!
************************************
I have hardly let her out of my arms since we arrived home and have been soaking up every second with her - even now I'm typing with her sweet little self snuggled up with me. Poor Steve hardly gets to hold her! Steve recently blogged about getting back to "life as usual."
We had a follow up visit with her doctor on Monday - 4 hours spent in the hospital doing blood draws, xrays and meeting with him to review everything and then waiting for a copy of her records to be made etc. Her blood work again came back looking really good, her infection level is way down and back to normal range. Her breathing checked out well, her chest sounded clear, her holes are healing up nicely and not infected, her chest xrays were too blurry so we'll redo them again next week. Her weight is very low and she isn't gaining very well (or having the level of output he would like to see) so prayers for her eating to improve and weight to begin going up would be great. Also, continued prayer for full recovery and no relapse. So far things seem to look really really good.
She struggles a lot to eat. Nursing is very, very hard for her (and me!). Her sucking reflex seems to be very weak, as is her latch and she has trouble swollowing (both when she nurses and with the bottle). She is also very, very sleepy and has trouble staying awake at all to eat. We try stripping her down, tickling her, using a wet wash cloth etc and she sleeps, sleeps, sleeps. Baby Girl, you need to EAT!!!
In the meantime, we are eating up and savoring every minute with her - so thankful and humbled to have her with us, to have her alive and to have her as part of our family. As I watch her chest move up and down (which I do A LOT - my new favorite past time), I can't help but be filled with awe and thanksgiving - knowing Who sustains each one and thankful for every. single. breath.
Caleb meets Evelyn Grace!
Evelyn Grace spent a few days in the "normal nursery" after her stay in the NICU. They wanted her to remain in the hospital for observation but they needed her bed in the NICU for sicker babies AND they wanted to "transition her" before sending her home. This meant we were able to see her 4 hours a day instead of 2 (SO FRUSTRATING!!!), I was allowed to try to nurse her (during visiting hours) and best of all, it meant Caleb got to meet her for the first time.
By now, Caleb had heard us talk about "baby sister" for weeks. He knew she wasn't in my tummy anymore and that she was sick so she had to stay in a special bed so the doctors could help her get better. He drove up with us countless times so we could visit but he wasn't old enough to go into the NICU which meant he sat outside in the hallway while we went to visit her (good thing his Opa bought him a Leapster for Christmas! Definitely came in very handy!).
Over the days and weeks he became increasingly frustrated that he couldn't go in and visit her and that she wasn't coming home with us. He began begging to see her, asking more and more questions and even tried demanding that she "come home right now." He just didn't undersand it all. Well, needless to say, the day we told him he was able to meet "baby sister" was a very happy day indeed. For us, and for him too. I'm not sure who was more excited. This was such a sweet moment for our family, to all be together FINALLY. Not something I will ever forget.
The pictures capture it beautifully.
Wednesday, January 23, 2013
Better and Better!
We are feeling weary so just a brief update but had to share our exciting news - it seems every day just gets better and better!
The NICU needed room and Evelyn Grace was the most stable baby there so she was moved this morning to the regular nursery (!!!) They are continuing to monitor her for the next few days to see how she does. So far, so good - Praise the Lord!
I was able to try nursing her today (it went "okay" for being seperated over 2 weeks- we'll have a steep learning curve) and I enjoyed every minute of snuggling! We thought the regular nursery would have more flexible visiting hours but were disappointed to find we are only allowed to see her from 12-2pm and 6-8pm (at least there is no more leaving the house at 3:40am to make the 5-5:30am visit time!).
The best part of the day was that CALEB GOT TO MEET HIS SISTER FOR THE FIRST TIME!! He LOVED it and had the biggest grin ever. He was all over talking to her, touching her, kissing her, holding her, blessing her....it was one of the sweetest things I've ever seen. Until it came time to leave and he was really, really uspet that "baby sister needs to come WITH us." We couldn't agree more. When we were finally driving away (with him all upset that she wasn't with us), he finally said "WAIT, we need to go back! I forgot one little detail." What's that, Bud? Caleb: "I forgot to tell the nurse not to let her cry!"
We are overjoyed and humbled by the speedy recovery our little Evelyn Grace has been making. We are overwhelmed and filled with gratitude for all your many prayers on her behalf - the Lord has been answering and Evelyn Grace is our true little miracle baby. All babies are miracles (and after this experience we even more so realize what a true miracle a healthy birth and baby is!) but Evelyn Grace's healing and speedy recovery from what is a very serious (and often fatal) condition is a miracle and we praise the Lord for His gift of life to our baby girl. We continue to pray for complete recovery and no relapse or build up of fluid in the lungs over the next days, weeks and months (something that can happen and put her back in the NICU) and we continue to lean heavily on the Lord to keep her safe and sustain her going forward. We aren't *quite* out of thewoods hospital yet but we are seeing what seems to be the light at the end of the tunnel and anticipating having our daughter home and in our arms (where she belongs!) soon.
Please continue to pray for complete healing and a clean bill of health, for no return of fluid or complications, for no breathing complications, for healing and no infection of the holes where her chest tubes were, for peace forus me when we bring her home (I'm really worried about something happening to her or a complication coming up and us not noticing it), and for the transition home (as she learns to be loved on, to be held and touched, to be nursed and as we learn to balance life as a family of 4 and heal from this whole experience). Thank you again for upholding us in prayer - we are so thankful for your outpouring on our behalf and also for the outpouring of love and care we have received (your notes, emails, cards, care packages, gifts of money to help pay for medical bills and travel, checking in on us, offerring resources, meals, cleaning, groceries etc). We feel very blessed by you. Thank you really doesn't say enough.
The NICU needed room and Evelyn Grace was the most stable baby there so she was moved this morning to the regular nursery (!!!) They are continuing to monitor her for the next few days to see how she does. So far, so good - Praise the Lord!
I was able to try nursing her today (it went "okay" for being seperated over 2 weeks- we'll have a steep learning curve) and I enjoyed every minute of snuggling! We thought the regular nursery would have more flexible visiting hours but were disappointed to find we are only allowed to see her from 12-2pm and 6-8pm (at least there is no more leaving the house at 3:40am to make the 5-5:30am visit time!).
The best part of the day was that CALEB GOT TO MEET HIS SISTER FOR THE FIRST TIME!! He LOVED it and had the biggest grin ever. He was all over talking to her, touching her, kissing her, holding her, blessing her....it was one of the sweetest things I've ever seen. Until it came time to leave and he was really, really uspet that "baby sister needs to come WITH us." We couldn't agree more. When we were finally driving away (with him all upset that she wasn't with us), he finally said "WAIT, we need to go back! I forgot one little detail." What's that, Bud? Caleb: "I forgot to tell the nurse not to let her cry!"
We are overjoyed and humbled by the speedy recovery our little Evelyn Grace has been making. We are overwhelmed and filled with gratitude for all your many prayers on her behalf - the Lord has been answering and Evelyn Grace is our true little miracle baby. All babies are miracles (and after this experience we even more so realize what a true miracle a healthy birth and baby is!) but Evelyn Grace's healing and speedy recovery from what is a very serious (and often fatal) condition is a miracle and we praise the Lord for His gift of life to our baby girl. We continue to pray for complete recovery and no relapse or build up of fluid in the lungs over the next days, weeks and months (something that can happen and put her back in the NICU) and we continue to lean heavily on the Lord to keep her safe and sustain her going forward. We aren't *quite* out of the
Please continue to pray for complete healing and a clean bill of health, for no return of fluid or complications, for no breathing complications, for healing and no infection of the holes where her chest tubes were, for peace for
Tuesday, January 22, 2013
Day 14
Happy 2 weeks of life Evelyn Grace!
In 2 weeks you have made some huge accomplishments, most notably:
~ Breathing on your own
~ Peeing and Pooping on your own
~ Eating without a feeding tube, mama's milk from a bottle
~ No longer needing oxygen
~ Successfully coming out of your sedation
~ losing almost half your birth weight (just over 9lbs at birth, just above 5.5 lbs now)
~ No more fluid draining from your chest
~ DOCTORS REMOVED YOUR CHEST TUBES COMPLETELY!!!
~ You were moved from the "intense" NICU room to the "more stable" NICU room
~ You are only being monitored at this point, you are not receiving any help!
And my personal favorite:
~ Doing well enough that mommy got to hold you today for the first time ever!!
****
The doctors have started talking about a timeline for sending Evelyn Grace home...one of them wants to send her home soon and the other wants to keep her a little longer for observation. I'm torn because we would LOVE to have her home but I'm also quite frankly TERRIFIED to bring her home! It is hard because they have never been able to give us what exactly was wrong with her - they just know that the fluid has stopped and she seems stable....it seems hard to know if she is "healed" if we don't know what was wrong in the first place but it seems that might be how it goes with Hydrops cases - even many autopsies come back inconclusive. Our prayer requests at this point would be continued wisdom for the doctors, the fluid to stay away, continued health for Evelyn Grace and peace for us when the time comes to bring her home. We need to continue toremember and trust that the Lord will care for her and has a plan for her; that He has numbered her days and He will watch over them.
Friday, January 18, 2013
Go away fluid!
This is what is draining out of Evelyn's chest:
She has two holes, one on each side of her small chest and two big tubes running into her chest, draining this yuckie fluid. We are thankful that it has decreased and today they said it was down even more but it isn't good that more continues to come - where is it coming from? What is causing it? How to get it to stop? These are questions that remain unanswered. Thankfully, so far no milk has drained out and that is a really good thing, but baffles them further. They are continuing to increase the amount of milk she receives and are now feeding her 8 times a day (!!!!) and increasing to 30cc's each feed. They plan to increase that to 50-80cc's over the next few days. This is great news! But I need prayers for my milk supply which is quite low and I'm not sure I'll be able to keep up with the growing amount of feedings. Exclusively pumping with no baby around is hard on milk supply. Please join us in praying for fluid to stop, for some kind of answers, for complete healing and for milk to feed her growing appetite.
Wednesday, January 16, 2013
Prayers from our Youth Group
One thing we say over and over to each other multiple times a day is how tangibly we feel the prayers of everyone enveloping us and bringing us constantly before our Heavenly Father. I have never felt so deeply covered in prayer as I have this past week. It is such a huge encouragement and blessing to us and it means absolutely so much as we receive note after note telling us "I'm praying" and "I've shared your prayer request with my Church" and "You don't know me but I heard your story and I want you to know I'm praying for you." It has been overwhelming (in the very best kind of way!) and has given us so much hope and encouragement. I know our Heavenly Father hears every prayer and I know He is at work in and through this.
One extremely special thing that happened while we were up in the hospital was that Jason (one of Steve's good friends and also a youth group volunteer) helped some of the students from the youth group put together this video of verses and prayers for our family. We watched it one evening while we were up in the hospital and it was a huge blessing to us. These are students we love and pour into, turning around to pour into and encourage US. This video is a special part of this road we are on so I wanted to include it here - I hope it blesses you as it did us and gives you a little flavor of some of the students we have the joy of working with here in Songtan.
To any of the students reading: this was such a blessing to us, thank you for your love, support, and encouragement to us during this time. Thank you for your prayers - I know God is listening and hearing and answering. We love you guys!
One extremely special thing that happened while we were up in the hospital was that Jason (one of Steve's good friends and also a youth group volunteer) helped some of the students from the youth group put together this video of verses and prayers for our family. We watched it one evening while we were up in the hospital and it was a huge blessing to us. These are students we love and pour into, turning around to pour into and encourage US. This video is a special part of this road we are on so I wanted to include it here - I hope it blesses you as it did us and gives you a little flavor of some of the students we have the joy of working with here in Songtan.
To any of the students reading: this was such a blessing to us, thank you for your love, support, and encouragement to us during this time. Thank you for your prayers - I know God is listening and hearing and answering. We love you guys!
Tuesday, January 15, 2013
*Jealous!*
Steve went back to work this morning (don't worry, I had some great friends come over to keep me company this morning, help take care of C and clean up the house!) - he had some meetings in the morning and then headed up for the hospital, bringing his "desk" with him. He saw Evelyn Grace at her 1-2pm visiting time and then he set up in the hospital and knocked some work out until her 7:30 visit time. At 8pm I received this picture in a text:
Not sure I've ever been so jealous!
Steve was able to give Evelyn Grace her first taste of "food" tonight. Thankfully I have been pumping and getting a little milk (praying for more) and he was able to feed her that at her first feeding. We are so glad he was there for it (at least one of us was) but seriously, this should be reserved for mamas!!!
And now please PRAY PRAY PRAY PRAY PRAY!!!
We are praying the Lord would graciously allow this feeding to go okay with no complications and no leaking out of her chest tubes. They will be closely monitoring her chest tube fluid for breastmilk...If milk comes through they will confirm a problem with her lymphatic system and the chylothorax diagnosis. This will mean she will not be abel to feed for about another 3 weeks in which time we will pray and they will hope that her body will self correct. They will try again in several weeks and see the results. It could potentially go on like that for some time OR her body will self correct and begin to heal. It's our prayer that the feed will go well and there will be no complications with it...will you join us?
Enjoy your milk coma baby girl - may there be many more to come!
Monday, January 14, 2013
One Week Old!
Praise the Lord for one week of LIFE.
He has brought our Evelyn Grace through her first 7 days and we have seen remarkable changes and progress in just those seven long short days.
Hours before birth, last pregnancy picture!
 |
| Terrified. |
Day 1:
 |
| Alive! |
Day 2:
Day 3:
 |
| Mama's first visit |
Day 4:
 |
| Saying good bye before we discharge |
Day 5:
 |
| More alert |
Day 6:
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| No more ventilator!!! |
Day 7:
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| First pacifier, no oxygen |
At one week old Evelyn Grace's biggest life accomplishment has been breathing on her own! For many babies we take that for granted but not this time....Prasie the Lord for her lungs beginning to function and her sweet little breaths of life. Today she is completely off of oxygen, no assistance at all. They said her blood oxygenation levels look good but her breathing is quite rapid so they will possibly put her back on the oxygen later today to help with that.
Happy One Week Evelyn Grace!
We love you more than words can say.
Got to see my Baby!!
I got to see my baby today. What a huge and special blessing. I just couldn't stand it any longer. Steve drove us all up there for the 1-2pm appointment; I didn't care that I had to do the 4 flights of stairs all over again (down and up).....it was totally worth it. I just miss her so much.
She is perfect and my heart melted into a giant puddle all over again the moment I saw her. She looks really good! She is even tinier today - weighing in at 6.4 pounds on day 6 and is starting to look more "preemie."
Her ventilator was gone!!! SHE IS BREATHING ON HER OWN! What a huge answer to prayer! They have her on oxygen through her nose but she is doing the actual breathing part herself, without the use of the machine. This means she has less tubes too!! I could see more of her face and one of her hands and one of her feet was completely FREE.
She was moving around a little more too, I caught a few leg stretches (she's got skinny little chicken legs now) and she moved her hands around some too. I got to adore her sweet little foot and all 5 precious toes since it was free. I just held it and held it.
The doctor was pleased that she was breathing; a big milestone for her. Unfortunately though her fluid has not continued to decrease at this point and actually went up slightly. This was a disappointment to them but they are hoping over the next few days maybe it will diminish further. This would be a prayer request - less and less fluid each day! They can't move forward with trying to give her breastmilk until this fluid greatly diminishes...they can't confirm or reject their hypothesis about Chylothorax until they can feed her.
Her swelling continues to reduce which is a good thing. She continues to have great urine output, another good good sign (better get some good heavy-wetter cloth diapers ready and find my bamboo inserts!).
The doctor mentioned that one really important thing at this point is to pray that no infections set in. Evelyn Grace is full of tubes and holes which greatly increases her risk of infection. Every time they need to change out a tube or move it or any time they are putting holes in her etc there is chance of infection setting in. This could be devestating to her. We need to pray protection over her that she would remain infection-free and all the things they are doing will stay clean, sterile and not bring infections. Please be in prayer for her health in this way.
I told the doctor we are praying for her a lot and that many people are praying and the doctor looked at me and told me we need to pray for THEM. They need wisdom on how to treat her and for her case. Will you also be in prayer for her doctors? Her main doctor is Dr. Kim (he is a kind, gentle, older man that has been extremely sweet to us). Her secondary doctor is Dr. Choi (we don't see him as much and he doesn't talk quite as much...he is younger and also very nice). There is a third doctor that is the "on call doctor" and I'm not sure what her name is but that is who I talked to today and she speaks the best English and is also very kind. She is the head doctor for the other Hydrops baby in the NICU unit so she knows a lot about Hydrops as well. The other Hydrops baby has Chylothorax (which is what they suspect Evelyn Grace might have). Please be in prayer for this team of doctors and also the nurses who come in contact with Evelyn Grace. Please pray they have wisdom, that they think of everything that is relevent for her case, that they stay healthy and keep her healthy and for understanding. I know the Lord already knows her diagnosis and I pray He grants wisdom to those who are caring for her in the NICU.
I'm not sure if I'm happier that I got to see her today or that she is off her ventilator...? But either way, what a happy day! Thank you Lord for some wonderful blessings today and everyone who continues to pray for us, encourage us and care for us.
She is perfect and my heart melted into a giant puddle all over again the moment I saw her. She looks really good! She is even tinier today - weighing in at 6.4 pounds on day 6 and is starting to look more "preemie."
Her ventilator was gone!!! SHE IS BREATHING ON HER OWN! What a huge answer to prayer! They have her on oxygen through her nose but she is doing the actual breathing part herself, without the use of the machine. This means she has less tubes too!! I could see more of her face and one of her hands and one of her feet was completely FREE.
She was moving around a little more too, I caught a few leg stretches (she's got skinny little chicken legs now) and she moved her hands around some too. I got to adore her sweet little foot and all 5 precious toes since it was free. I just held it and held it.
The doctor was pleased that she was breathing; a big milestone for her. Unfortunately though her fluid has not continued to decrease at this point and actually went up slightly. This was a disappointment to them but they are hoping over the next few days maybe it will diminish further. This would be a prayer request - less and less fluid each day! They can't move forward with trying to give her breastmilk until this fluid greatly diminishes...they can't confirm or reject their hypothesis about Chylothorax until they can feed her.
Her swelling continues to reduce which is a good thing. She continues to have great urine output, another good good sign (better get some good heavy-wetter cloth diapers ready and find my bamboo inserts!).
The doctor mentioned that one really important thing at this point is to pray that no infections set in. Evelyn Grace is full of tubes and holes which greatly increases her risk of infection. Every time they need to change out a tube or move it or any time they are putting holes in her etc there is chance of infection setting in. This could be devestating to her. We need to pray protection over her that she would remain infection-free and all the things they are doing will stay clean, sterile and not bring infections. Please be in prayer for her health in this way.
I told the doctor we are praying for her a lot and that many people are praying and the doctor looked at me and told me we need to pray for THEM. They need wisdom on how to treat her and for her case. Will you also be in prayer for her doctors? Her main doctor is Dr. Kim (he is a kind, gentle, older man that has been extremely sweet to us). Her secondary doctor is Dr. Choi (we don't see him as much and he doesn't talk quite as much...he is younger and also very nice). There is a third doctor that is the "on call doctor" and I'm not sure what her name is but that is who I talked to today and she speaks the best English and is also very kind. She is the head doctor for the other Hydrops baby in the NICU unit so she knows a lot about Hydrops as well. The other Hydrops baby has Chylothorax (which is what they suspect Evelyn Grace might have). Please be in prayer for this team of doctors and also the nurses who come in contact with Evelyn Grace. Please pray they have wisdom, that they think of everything that is relevent for her case, that they stay healthy and keep her healthy and for understanding. I know the Lord already knows her diagnosis and I pray He grants wisdom to those who are caring for her in the NICU.
I'm not sure if I'm happier that I got to see her today or that she is off her ventilator...? But either way, what a happy day! Thank you Lord for some wonderful blessings today and everyone who continues to pray for us, encourage us and care for us.
Sunday, January 13, 2013
Lil Sweet Pea
The last time I saw Evelyn Grace (Friday afternoon):
Steve visiting Evelyn Grace (Saturday afternoon):
Missing our Baby
Leaving the hospital without our new baby was one of the harder things I've ever done. I kept trying to remind myself that at least we are leaving the hospital with a baby who is alive and improving. We truly have much to be thankful for.
But I still feel like grieving. My heart is heavy and I miss my baby. It feels strange and lonely to be home, not be pregnant, but not have a baby in our arms. I know in my head she is being well cared for and is much better off in the NICU in Seoul than here in our home right now but it doesn't comfort my heart or my empty arms and it doesn't stop the tears.
Everything about this past week feels so intuitively wrong - having her 5 weeks early, having a c- section, not seeing my baby for the first 2 days of her life, not nursing her, not holding her, not kissing her, not cuddling her, not taking care of her or changing her diapers or wrapping her in her blanket. Seeing my baby full of tubes and holes and monitors, sedated and on pain killers. Only being allowed to see her briefly 3 times a day and then walking away, leaving her behind at the hospital and returning back to life without her.
Yet I know we are experiencing peace despite the heartbreak. I know the Lord is watching over us and her. I know this is all in His hands and absolutely did not come as a surprise to Him. I know this has been in His plans and is ordained for a reason. I know He is in control.
"He is the image of the invisible God, the firstborn of all creation. For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities--all things were created through him and for him. And he is before all things and in him all things hold together. And he is the head of the body the Church. He is the beginning, the firstborn of creation that in everything he might be preeminent. For in him all the fullness of God was pleased to dwell and through him to reconcile to himself all things whether on earth or in heaven, making peace by the blood of his cross."
For by him Evelyn Grace was created - she was created through him and for him. He is before her and in him she holds together...He is the beginning that in everything He might be preeminent.
Her life is His, created for him and by him...It is only in Him that she (we all) hold together. He holds all things and He holds her (and us...and you...) in His Hands. We grieve. And we cling to Him, knowing He goes before and He has a plan in this.
Sleep well sweet Evelyn Grace. We miss you tonght and every night. We are praying for you - along with so many others - and we trust you to Jesus' care as you sleep tonight. May you feel His presence and His sweet peace and healing hands. We love you Baby Girl.
But I still feel like grieving. My heart is heavy and I miss my baby. It feels strange and lonely to be home, not be pregnant, but not have a baby in our arms. I know in my head she is being well cared for and is much better off in the NICU in Seoul than here in our home right now but it doesn't comfort my heart or my empty arms and it doesn't stop the tears.
Everything about this past week feels so intuitively wrong - having her 5 weeks early, having a c- section, not seeing my baby for the first 2 days of her life, not nursing her, not holding her, not kissing her, not cuddling her, not taking care of her or changing her diapers or wrapping her in her blanket. Seeing my baby full of tubes and holes and monitors, sedated and on pain killers. Only being allowed to see her briefly 3 times a day and then walking away, leaving her behind at the hospital and returning back to life without her.
Yet I know we are experiencing peace despite the heartbreak. I know the Lord is watching over us and her. I know this is all in His hands and absolutely did not come as a surprise to Him. I know this has been in His plans and is ordained for a reason. I know He is in control.
This whole week Colossians has been a huge comfort.
"He is the image of the invisible God, the firstborn of all creation. For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities--all things were created through him and for him. And he is before all things and in him all things hold together. And he is the head of the body the Church. He is the beginning, the firstborn of creation that in everything he might be preeminent. For in him all the fullness of God was pleased to dwell and through him to reconcile to himself all things whether on earth or in heaven, making peace by the blood of his cross."
For by him Evelyn Grace was created - she was created through him and for him. He is before her and in him she holds together...He is the beginning that in everything He might be preeminent.
Her life is His, created for him and by him...It is only in Him that she (we all) hold together. He holds all things and He holds her (and us...and you...) in His Hands. We grieve. And we cling to Him, knowing He goes before and He has a plan in this.
Sleep well sweet Evelyn Grace. We miss you tonght and every night. We are praying for you - along with so many others - and we trust you to Jesus' care as you sleep tonight. May you feel His presence and His sweet peace and healing hands. We love you Baby Girl.
Thursday, January 10, 2013
Evelyn Day 4
It's hard to believe she is only 4 days old! It feels like she has already been here for so long and she already feels like so much a part of our family. It is encouraging to think "it's only been 4 days" instead of the eternity it has felt like...she is doing really well for only being on day 4!
Yesterday we had some dear friends come up to visit and they brought Caleb with them. It was such a blessing to see him after being away for 8 days (the longest we've ever been apart is one night)! We missed our little chatter box.
We tried to make the evening special for him. He was a little weirded out by the hospital, by mommy being in bed and moving so slow and by the equipment. He kept asking to please go home. He also asked about his baby sister and kept trying to talk to my belly. We explained as best we could and showed him some pictures of her for the first time (he is too young to go into the NICU and see her). He asked a few questions about the tubes in her mouth and her special bed and then promptly told us he was "sick and needed us to put a tube in his mouth to make him feel better." He also told me not to worry, he would get me one of his animal vitamins and it would make me feel better. It was good to be able to show him some pictures and try to explain some to him, His conclusion after we talked about the NICU and her special bed was, "Oh that's the place where all the girl babies go after they are born." He brings us smiles.
He slept better here than I had imagined and him and daddy left early to go back to Songtan and get a van to drive me home later today. One "random" prayer request: When we arrived back from our trip to the States we had no running water...we've tried all week to get it fixed and working again but so far as we have heard it is still not working (sounds like maybe all the pipes froze in our building?). Really hoping to have running water by the time we get back (or soon after). They have not let me shower all week and they said I need to wait 2 more days (!!!) - really looking forward to a shower! Also, we live on the 4th floor with no elevator and I've been told 4 days after c-section this will be difficult/painful to do. We have had several kind offers to stay with friends who have elevators and running water but we just really long to be home by ourselves in our own environment and settle Caleb to some kind of "normal." It would be great to have running water and to be able to make it up those stairs today! Warning, however, once I make it up I might not come down for a while!
We have had a huge outpouring of support from many, many people. We currently have 2 people who might have friends in the area near the hospital that we could stay with! This would be a HUGE HUGE blessing and such a relief. Our plan (for now) is to try to go home and give me some days to heal and recover. During that time, Steve will try to commute up as much as he can for visits with Evelyn. Hopefully after a few days to a week, I will be able to be more up and around and able to better care for Caleb and myself. At that time, we may try to come stay up closer to the hospital for as long as we are able (and Steve will still need to commute as he can). At this time it would be too hard for me to stay by myself and get to the hospital via public transportation so I think we need a few days to heal and rest first. We have also had some hugely generous offers to pay for a few nights at a hotel if we need it (which would also be a huge blessing as hotels in Seoul are pretty expensive...apparently hotels near the hospital give a 40% discount if your child is in the hospital but even discounted it can be around $100/night). So that is our plan for now, subject to change always and to how she is doing.
And now for HER update:
- I was able to get up at 5 this morning and go visit her for half hour, each visit feels like a blessing and a relief that she is still "ok." Here is what she looks like this morning:
- I was able to talk to the on-call neonatal specialist this morning (Evelyn Grace's normal doctor is Dr. Kim but this morning he wasn't there so the on call doctor came over and introduced herself). One thing I have really appreciated about this NICU is every visit time one of the doctors or several of the nurses come over and spend a good 10 minutes talking to us and sharing updates and answering any questions we may have (although we really don't even know what to ask!).
- Evelyn gave a lot of urine output last night, which they take as a good sign and are really happy about. Go Baby Girl!
- They had hoped that once they drained all the fluid from her lungs, it would end (that would be best possible case scenario) but the fluid has started returning and continues to drain more. The good news in this is that the first few days her fluid output was about 300cc per day and yesterday it was down to 150cc, which means it is decreasing in amount. The doctor said many Hydrops babies need medication to try to stop the draining but since she is reducing on her own (and it isn't increasing which is huge too), they are going to try to let her body continue to reduce and see if it will self heal/correct without needing medication. She seemed hopeful since it had already reduced. This would be really good and we hope to continue to see reduction in fluid levels every day.
- For now she is estimating minimum stay to be 3-4 weeks for Evelyn (that would be best case).
- Her weight today is 3300grams, about 7.2 pounds, which is down quite a bit from her birth weight of 9.02 pounds! This is a great sign of fluid reduction and swelling decrease.
- She continues to be sedated and on high pain medications. I hate seeing her need to be sedated but it is really imortant for her care right now. It is so sad that she needs high pain meds but I'm so glad she isn't feeling all the pain she is in. She does occcasionally open her eyes though for brief periods before they roll back in her head and she also startles or shows reflexes (like curling her toes or fingers or grimacing) sometimes too. She tries to cry sometimes and scrunches up her whole face but no sounds come out, I'm assuming because of all the tubing in her throat? I have also caught her sucking on her tubes some...maybe she'll end up being a good breastfeeder after all of this? She did like to suck her thumb on ultrasound pictures!
- Right now they are not feeding her "real food" but she has IV nutrition. They need to wait for more of a fluid reduction before they try milk but the doctor sounded hopeful about starting in about a week. They are very pro-breastfeeding in this NICU and every time I come they encourage me to pump and bring milk. Now I just need my milk to come in! Once they try some milk with her, they can further test to see possible diagnosis/treatment depending on how her body responds to the feeding. This will be another milestone to look for.
- They did a sonogram of her brain last night and it looked good. They said they can not tell if everything will function correctly, if anything was damaged or if she will have any issues that way but they can tell from it that her entire brain is there and formed (nothing missing structurally) and that there is no hemmoraging on the brain. Another positive report.
- I asked her about Evelyn's chances of leading a "normal" life at some point and she said that IF a hydrops baby survives, they usually go on to living a fairly "normal" life. The biggest thing is getting her out of NICU and functioning on her own. Time will tell and she said the longer she is in NICU, the less chances she has of leaving (but we're only on Day 4 so we've got time!).
- We have had several people write to let us know "a friend of a friend" or "someone from Church" had a baby with Hydrops and we have heard several really positive and happy endings, with the babies leaving and going on to live great lives. These stories have been so encouraging and uplifting to dwell on. We know it rests in the Lord's hands and it is great to hear of His faithfulness in healing other babies with similar conditions. I know His hand is on her, He is holding her, He is sustaining her and He already knows the number of her days. It's in His hands and she is in His hands, which is the safest, best possible hands to be in!
- If you are interested, here are a few blogs of similar conditions....It helps us to read because we are still trying to figure out what we are dealing with and make sense of some of the conversations we have been having with the NICU doctors (language is a big barrier for us, some times they just write a few words on a post it note and we go "research" - aka Google it). Click Here and Here and Here. Of course from what we are told each Hydrops case is different and can vary quite a bit but maybe some of the ways these blogs explain it will help clarify it for you better than I can. They are hopeful at the very least.
- They wrote down the words "Chylothorax" "thracic duct leak" and "lymphatic" - not a for sure diagnosis but one of their suspicions at this time....still unconfirmed. We haven't been able to find a lot on what exactly this means but are working on it...If you know more than we do, feel free to share!
- The neonatal specialist this morning told me that Hydrops is a condition that neonatal specialists hate coming accross because it can be very frustrating - often they do many tests and nothing is ever confirmed or diagnosed. Some times the body heals itself and baby is okay but they never truly knew what the cause was. Sometimes they are able to find a cause. Sometimes they run every test imaginable and are still inconclusive. It sounds like a very unknown condition and they are doing their best. From everything I read, it sounds like the care she is receiving is the same care she would receive back in the States.
That's all for now! I hope it helps by way of update and information. It is all we really know at this point, as we continue to wait and pray.
Prayers for figuring out how to maximize time seeing her and also recover would be greatly appreciated as well as continued prayers that her doctors would be wise in their treatment plans and that the Lord would sustain her and us during this time.
Thank you again for our prayers and outpouring of support to us during this time. It really means so much more than you will ever know.
Yesterday we had some dear friends come up to visit and they brought Caleb with them. It was such a blessing to see him after being away for 8 days (the longest we've ever been apart is one night)! We missed our little chatter box.
 |
| Sortores visiting (Sadie and family) |
 |
| Dinner together |
We have had a huge outpouring of support from many, many people. We currently have 2 people who might have friends in the area near the hospital that we could stay with! This would be a HUGE HUGE blessing and such a relief. Our plan (for now) is to try to go home and give me some days to heal and recover. During that time, Steve will try to commute up as much as he can for visits with Evelyn. Hopefully after a few days to a week, I will be able to be more up and around and able to better care for Caleb and myself. At that time, we may try to come stay up closer to the hospital for as long as we are able (and Steve will still need to commute as he can). At this time it would be too hard for me to stay by myself and get to the hospital via public transportation so I think we need a few days to heal and rest first. We have also had some hugely generous offers to pay for a few nights at a hotel if we need it (which would also be a huge blessing as hotels in Seoul are pretty expensive...apparently hotels near the hospital give a 40% discount if your child is in the hospital but even discounted it can be around $100/night). So that is our plan for now, subject to change always and to how she is doing.
And now for HER update:
- I was able to get up at 5 this morning and go visit her for half hour, each visit feels like a blessing and a relief that she is still "ok." Here is what she looks like this morning:
- I was able to talk to the on-call neonatal specialist this morning (Evelyn Grace's normal doctor is Dr. Kim but this morning he wasn't there so the on call doctor came over and introduced herself). One thing I have really appreciated about this NICU is every visit time one of the doctors or several of the nurses come over and spend a good 10 minutes talking to us and sharing updates and answering any questions we may have (although we really don't even know what to ask!).
- Evelyn gave a lot of urine output last night, which they take as a good sign and are really happy about. Go Baby Girl!
- They had hoped that once they drained all the fluid from her lungs, it would end (that would be best possible case scenario) but the fluid has started returning and continues to drain more. The good news in this is that the first few days her fluid output was about 300cc per day and yesterday it was down to 150cc, which means it is decreasing in amount. The doctor said many Hydrops babies need medication to try to stop the draining but since she is reducing on her own (and it isn't increasing which is huge too), they are going to try to let her body continue to reduce and see if it will self heal/correct without needing medication. She seemed hopeful since it had already reduced. This would be really good and we hope to continue to see reduction in fluid levels every day.
- For now she is estimating minimum stay to be 3-4 weeks for Evelyn (that would be best case).
- Her weight today is 3300grams, about 7.2 pounds, which is down quite a bit from her birth weight of 9.02 pounds! This is a great sign of fluid reduction and swelling decrease.
- She continues to be sedated and on high pain medications. I hate seeing her need to be sedated but it is really imortant for her care right now. It is so sad that she needs high pain meds but I'm so glad she isn't feeling all the pain she is in. She does occcasionally open her eyes though for brief periods before they roll back in her head and she also startles or shows reflexes (like curling her toes or fingers or grimacing) sometimes too. She tries to cry sometimes and scrunches up her whole face but no sounds come out, I'm assuming because of all the tubing in her throat? I have also caught her sucking on her tubes some...maybe she'll end up being a good breastfeeder after all of this? She did like to suck her thumb on ultrasound pictures!
- Right now they are not feeding her "real food" but she has IV nutrition. They need to wait for more of a fluid reduction before they try milk but the doctor sounded hopeful about starting in about a week. They are very pro-breastfeeding in this NICU and every time I come they encourage me to pump and bring milk. Now I just need my milk to come in! Once they try some milk with her, they can further test to see possible diagnosis/treatment depending on how her body responds to the feeding. This will be another milestone to look for.
- They did a sonogram of her brain last night and it looked good. They said they can not tell if everything will function correctly, if anything was damaged or if she will have any issues that way but they can tell from it that her entire brain is there and formed (nothing missing structurally) and that there is no hemmoraging on the brain. Another positive report.
- I asked her about Evelyn's chances of leading a "normal" life at some point and she said that IF a hydrops baby survives, they usually go on to living a fairly "normal" life. The biggest thing is getting her out of NICU and functioning on her own. Time will tell and she said the longer she is in NICU, the less chances she has of leaving (but we're only on Day 4 so we've got time!).
- We have had several people write to let us know "a friend of a friend" or "someone from Church" had a baby with Hydrops and we have heard several really positive and happy endings, with the babies leaving and going on to live great lives. These stories have been so encouraging and uplifting to dwell on. We know it rests in the Lord's hands and it is great to hear of His faithfulness in healing other babies with similar conditions. I know His hand is on her, He is holding her, He is sustaining her and He already knows the number of her days. It's in His hands and she is in His hands, which is the safest, best possible hands to be in!
- If you are interested, here are a few blogs of similar conditions....It helps us to read because we are still trying to figure out what we are dealing with and make sense of some of the conversations we have been having with the NICU doctors (language is a big barrier for us, some times they just write a few words on a post it note and we go "research" - aka Google it). Click Here and Here and Here. Of course from what we are told each Hydrops case is different and can vary quite a bit but maybe some of the ways these blogs explain it will help clarify it for you better than I can. They are hopeful at the very least.
- They wrote down the words "Chylothorax" "thracic duct leak" and "lymphatic" - not a for sure diagnosis but one of their suspicions at this time....still unconfirmed. We haven't been able to find a lot on what exactly this means but are working on it...If you know more than we do, feel free to share!
- The neonatal specialist this morning told me that Hydrops is a condition that neonatal specialists hate coming accross because it can be very frustrating - often they do many tests and nothing is ever confirmed or diagnosed. Some times the body heals itself and baby is okay but they never truly knew what the cause was. Sometimes they are able to find a cause. Sometimes they run every test imaginable and are still inconclusive. It sounds like a very unknown condition and they are doing their best. From everything I read, it sounds like the care she is receiving is the same care she would receive back in the States.
That's all for now! I hope it helps by way of update and information. It is all we really know at this point, as we continue to wait and pray.
Prayers for figuring out how to maximize time seeing her and also recover would be greatly appreciated as well as continued prayers that her doctors would be wise in their treatment plans and that the Lord would sustain her and us during this time.
Thank you again for our prayers and outpouring of support to us during this time. It really means so much more than you will ever know.
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