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!

 
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 the woods 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 for us 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.

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.
 
 
 
 
 
 

Blessed.


Can't get enough of you!


Monday, January 21, 2013

Sunday's Sermon

Yesterday was a really hard day.  My arms felt very empty.  I distinctly remember the first Sunday after Caleb was born and bringing him to Church for the first time. It was just really special to me - our whole little family of 3 all together for Church for the first time.  And getting to show him off to everyone.  And just the milestone of "his first Church service."  It was just really special.  This Sunday was my first Sunday back and I wasn't pregnant but neither did I have a baby with me.  I knew in my head that I have a million reasons to rejoice and be thankful (and I AM thankful!!) but my heart hurt nonetheless and my arms felt their emptiness.

Steve was called upon this Sunday to preach and even though he didn't have a lot of time to prepare, he felt like the Lord had a message on his heart to give.  He shares a lot of our story and the hope we have looked to and clung to these past 3 weeks...He shares the only real comfort we felt and the only way we have survived the nightmare that January brought.  If you are interested in listening, you can listen to it here.

It was really neat how the Lord worked the whole morning out.  The worship leader did not know Steve was going to be preaching or what he was preaching on but every song fit perfectly with the message.  Also, a friend of ours did the song during offerring and asked everyone to meditate on Psalm 18 while he played....Psalm 18 was a chapter I read frequently the week we were in the hospital.  He didn't know that either.  It was just overall a neat service and it felt so good to be back together with our church family.  Looking forward to the Sunday we can introduce our baby girl.

 

Friday, January 18, 2013

Love her!

 
 
Got to see her sweet face with NO TUBES and NO OXYGEN, just sweet baby face.

Big Brother





Milk Boy doing "his job"
Tired out

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.

Thursday, January 17, 2013

Day 9

And the days go on....not much of an update for day 9 but I know a lot of people are wondering so I don't want to NOT post.  Steve got to see Evelyn Grace this morning but we have not been able to talk to any doctors the past two days.

one of my all time favorite pictures!

 He fed her another bottle (we are assuming it is a good thing they keep feeding her) and he said her sucking reflex was better today.  The first day she wasn't able to finish her bottle herself (they ended up finishing it in her food line) and the second day she finished by herself but it took her a long, long time and needed a lot of help. Today she finished fairly quickly and didn't need as much coaxing.

mama's milk


Her weight is down to 5 pounds 13 ounces today, slightly lower than yesterday.  She continues to drain fluid out of her lungs (about 60 cc's a day) which is still confusing and concerning.  So far, so good with the feedings though - as far as we know, they have not found breastmilk in the fluid.  This is HUGE and an answer to prayer.

We hope to go up tomorrow for the mid-day visitint time (this is the time that we can talk to the doctors and the longest visit time), which means I will hopefully be able to go and see her. I long to see her and hold her close and have her home.  I miss her so much and feel so empty not being pregnant but also not having her in my arms.

Caleb has been a trooper through all of this and it continues to be very confusing to him.

Driving to Seoul to see Baby Sister

He talks about baby sister a lot and asks about her. He keeps asking to SEE her and he doesn't understand why we go see her but he can't.  Two days ago when we went up to the hospital together, we gave him the "very special job of carrying mama's milk to the NICU for baby sister."  He absolutely loved his "special job" and beamed with pride carrying the milk to her.  He was thrilled when I came out with a picture of her drinking "the milk he brought" from a bottle.  He keeps talking about how he brings his sister her milk.  Love him!!!


He is starting to adjust better and it has been so good for him to be home, in his own home, with his own things, with us.  It was a very rough few days at first of him being very clingy and very teary and very upset and acting out a lot but he is getting back to "normal" and we are enjoying our time with him. 

This whole thing has made me realize just HOW very blessed we were to have a healthy baby and delivery and now a healthy little boy.  It's always a joy and a blessing when babies are born and we thank the Lord for safe and healthy deliveries but we just don't realize what a huge blessing and miracle it truly is when babies are born healthy and whole and safe. It is so easy to take life and health and breath for granted.  These days we have been thanking the Lord for all of our breathes of life that He gives and sustains daily, hourly, second by second. 

Wednesday, January 16, 2013

Brief Update Day 8

I'm exhausted so heading to bed but I know so many people are wondering how the feeding went and what the update is....so far, so good.  As of earlier today Evelyn Grace still has fluid draining from her lungs (bad thing) but so far the have not seen any breastmilk from her feeding show up (great thing).  They allowed her to have another 10cc of breastmilk today (AND GUESS WHO GOT TO FEED IT TO HER THIS TIME?!?!? THAT'S RIGHT, HER MAMA!!! 'BOUT TIME).  They remain cautiously optimistic but say it could be as late as Friday or this weekend before we would see anything conclusive with the feedings. For now, they will continue to feed her a little each day unless something shows up.  Praise the Lord! May He allow it to continue!

Her catheter has been removed and she is now in diapers.  She has a new IV in her arm that wasn't there before (not sure why or what it is)  and she is slightly less sedated than before which means we've heard a few little whimpers of her sweet voice and had a few movements too. She is back on oxygen because it was too much of a strain for her to breath without it. She is still doing the breathing herself (yay!) but she has an oxygen tube in her nose to help.  She is down to 5lbs 14 ounces today and the doctor thinks today or tomorrow *should be* her lowest weight and then she might start gaining since she has been allowed to eat.  Can not believe that in 8 days she has dropped so much (fluid) weight from her original 9.02lbs! Or that she was that swollen/inflated to start with -wow.

Thank you for upholding her (and us) in your prayers.  I know the Lord is listening to the prayers of His people and answering. I know He is sustaining her and giving her breath and life.  We praise Him for 8 days and ask for many, many more.  We are amazed at His healing already and the quick progress she is making (her story is not typical of a Hydrops baby) and pray for continued progress.  Thank you for joining us on this journey.

Also a special, special thank you to so many here in our local community who have POURED OUT love upon love upon love to us in the form of organizing, cleaning, coming over to help me with Caleb during the days, bringing meals, bringing groceries, coming over to talk and comfort and caring for us in such tangible and helpful ways. You have no idea how helpful this has been/is - we literally could not have done this without you.  Thank you just doesn't say it.

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!


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:
 

No more ventilator!!!
 
Day 7:
 
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.

More Links on Hydrops and Chylothorax

I'm not sure about you but I still feel unclear about so much of what is going on with Evelyn Grace!  The doctors do their best to explain but I still don't fully understand.  It sounds like they don't either.  It sounds like Hydrops is a frustrating case for that very reason. But I'm trying hard to research and learn as much as I can about it and about what is going on with our Baby Girl.

I found this fantastic support group on facebook for Hydrops families.  Everyone on there is really supportive and informative.  I've been able to see pictures of healthy 1 and 2 and 3 year olds who are Hydrops survivors.  I've been able to read other's journeys and I've been able to glean more information and articles.

I wanted to post some of what I've been reading in case you are interested in learning more or maybe it can explain better than I am able to right now.

Non Immune Hydrops Fetalis Article

Congenital Chylothorax (this is the doctor's best guess as to what he thinks may be going on with Evelyn Grace - it is unconfirmed right now but once they start her feeding they will be able to confirm if they are correct or not)

Micah's blog - This is a blog of a women on the support group that I've been talking with.  She had a daughter pass away from Hydrops/ Chylothorax and she now has a 7 week old son in the NICU who is fighting it.  She does her best of explaining in lay terms what Chylothorax is.

If you find anything helpful that you want to pass along, feel free to leave a comment!  We are learning as we go, trying to learn as much as we can as fast as we can.

Sunday, January 13, 2013

Lil Sweet Pea

The last time I saw Evelyn Grace (Friday afternoon):
 
video
 
 
 
 
Steve visiting Evelyn Grace (Saturday afternoon):
 
video


 


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 improvingWe 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.

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.

Saturday, January 12, 2013

Two Videos

This is somewhat out of order but I just found some clips Steve took on two different days this week! I thought they were fun and I know some family will enjoy watching, so I thought I would share here.  You can really see a difference from the first to the second with her swelling, she looks so much better already!


video


  video
 
We are praising the Lord for the small strides we see her gain every day, most encouraging is how much the fluid is reducing daily and how much weight she is losing (the only time you would want your preemie to LOSE weight!).  She continues to look better and better every day which is such a huge encouragement and such an answer to prayer.  We feel your prayers covering us and her and we feel the Lord so tangibly in control and holding our baby girl when we can't.
 
Another comparison picture:
 
Day 1:
 
 
Today:
 
 
 
Wow Baby Girl!!
 
Thank you, Lord!!

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. 

Sortores visiting (Sadie and family)
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.

Dinner together
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.

Evelyn's Medical Update

It has been a roller coaster of emotions this past week, from first finding out something was wrong with our baby girl to the unfolding story of what is going on with her.



It is frustrating to a point because we really don't know that much.  There are a lot of unknowns still and they still don't know for sure what has caused the Hydrops or how exactly they need to treat it.  I'm sure there is also an added barrier with language too.  Although we have been very thankful that the doctors here all speak English very well, it still is not their first language and the topics we are talking about are highly specialized so it makes communication and understanding more difficult. 

Mama meeting Evelyn for the first time
This is what we know:

- At our 35 week ultrasound Baby Evelyn was diagnosed with a rare condition called Hydrops.  She had fluid surrounding her lungs and heart, excess amniotic fluid and her body was beginning to swell.

- Her previous ultrasounds were all "normal" and showed no signs of Hydrops so it appears to be a late onset, which bodes in her favor.

- She has really cute little hands and feet and lots of dark hair



- She was born at 35 weeks, which is later than most Hydrops babies and this also is a really positive thing.

- She is responding well to everything they have done to her and remains in "stable" condition.  She can not breath on her own (her lungs are very immature) so she is on a breathing machine.  She is also constantly having fluid drain out of her lungs.  She has lost about 1.5lbs already as the fluid has drained and the swelling is going down.  This is really good news - just about the only time you would want your infant to LOSE weight.

- She started urinating on her own yesterday - this was really good news as it shows her body is starting to function on it's own.  She has a cathetar and her body is making a good level of output, which makes the doctors happy (and us of course!).

- They have been able to reduce her oxygen levels slightly because she is trying to take breaths on her own. 

- Because of her poor oxygenation and because her lungs are not functioning on their own, it has caused her to have Persistent Pulminary Hypertension which could turn serious so they are monitoring this heavily.

- She is not able to eat and won't for a while...They have her on IV nutrition for now.

- One negative thing is they were really hoping once the fluid was drained, it would be gone but today they are seeing that more fluid is being replaced in the lungs as they are draining which is not the best case scenario.  They will continue trying to figure out "why."  It's hard to see our sweet baby girl with holes in her chest, draining dark fluid. 


- Her heart continues to beat strongly, which is another good sign.  We love watching her little chest move up and down as she lays in her special bed. We love the times we get to spend with her, praying over her, singing to her and telling her all about our God, our family and our friends.

3 of the 4 of us!

Evelyn Grace joins our family

Returning from our trip to the States last week, I couldn't wait to have some time to blog about our trip and all the fun pictures that went along with it.  It was an exhausting trip but we had a great time and enjoyed every minute of seeing our families, watching Renee and Chris get married and being all together for Christmas.  But all the fun memories will need to wait; our week was turned upside down.

On the flight back I told Steve that the entire month of January all I wanted to do was sit at home and do nothing.  I said I would go to Church, go to our MOMS group and other than that I just wanted to be home, get settled and prepare for Baby Girl's birth.  I think Caleb felt the same way - as soon as we got home he kept saying "I'm just so glad to be home, I'm just so glad to be home, I love our house and my own bed!" We had about two days to enjoy it.

Although I was really tired and didn't really feel like making a trip up to Seoul on Thursday, I was glad to remember I had a doctor appointment - I felt like I really needed to go in and had been increasingly uncomfortable the past 2 weeks.  Part of me wondered if I could be in early labor and another part of me wondered why I was being such a wimp this pregnancy!  Although I was uncomfortable with Caleb at the end, I didn't remember it being so bad.

Steve had a meeting come up that morning so he wasn't able to go with me to my 35 week appointment like he had for my others.  I made arrangements for Caleb to spend the morning with Michelle and planned to head up on my own.  My friend Hannah heard about it and insisted on coming up with me. I felt bad having her drag her 8 month old all the way up to Seoul for my doctor appointment but she insisted and we thought we could get some much needed "catch up" time in on the bus and maybe have coffee or lunch after.  I am so glad she came along!

At the appointment my doctor wanted to do an ultrasound to see baby's position.  I didn't really want another ultrasond and didn't feel like it was needed just to determine position but I'd also had this nagging worry that something wasn't right so I thought the ultrasound would help me feel more at easse and reassure me everthing was okay.  I'm so glad for that ultrasound!

It took longer than I had thought it would for a quick position check but I enjoyed seeing Baby Girl and didn't think much of it.  When I went in to see the doctor after the scan I could tell he seemed upset.  I sat down and he told me he was very concerned about what the ultrasound picked up  - that I had an over abudnance of amniotic fluid (causing all that pressure and discomfort I'd been having for weeks) and that baby had fluid and swelling, a condition he referred to as Hydrops.  He told me I needed to go immediately to a bigger hospital for more testing and possibly an emergency c-section.  He was fantastic and gave me a referral to what he called "the best hospital for this in the country." He also called ahead to a friend of his at the hospital to personally tell her we were coming and ask her to care for us.  He also sent one of his English speaking staff wtih us to show us how to get to the hospital and help me get settled there. We called Steve to come up immediately and I was again so glad Hannah was there with me.

Everything from there has been a blur all week.  It has been a roller coaster, up and down, full of good moments and terrible moments, full of optimism one minute and despair the next.  Upon further testing, they confirmed the condition to be Hydrops and instead of immediate c-section they decided to try to first remove some of the amniotic fluid and also remove the fluid from Baby's lungs to see if that could help buy her some time (the longer she could stay inside the womb the better and her lungs were develomentally behind for her age because they had been compressed by the fluid and unable to grow.  The proceedure was successful in reducing the amniotic fluid (they removed 1700cc's of fluid from my womb!) and they were also able to reach baby and reduce the fluid in her lungs as well.  My amniotic fluid index was 46 before the proceedure (normal is 15 and high end is 20). Afer the procedure it was reduced to an index of 34 and I could feel the relief almost immediately.  I also started having contractions (which is a common reponse to the procedure) so I was put on Magnesium Sulfate to try to stop labor and closely monitored around the clock.  The doctor was hopeful about the procedure.

The next day, however, the ultrasond showed more fluid had built up in Baby Girl and her swelling was increasing.  They started steroid injections to increase her lung development in preparation for birth.  The next two days felt like blow after blow.  One thing after another seemed to come up or happen and it got to the point we literally cringed every time a staff person came into our room, wondernig "what now?!"  It felt like we were living a nightmare that kept getting worse.  We tried hard to stay positive and not focus on the "what if's" and worst case scenarios.  We felt huge comfort knowing none of this came as a suprirse to the Lord, that He holds all life together and that He had created this little baby girl and that her life is His. He loves her more than we do and He has plans for her. 

We had to wait for a spot in the NICU to open up - there are 38 beds available in the NICU and all were full.  We also wanted to give her as much time as we could before being born.  They continued to monitor her closely to make sure she was okay and Monday decided she really needed to be born the next day.  They could only do so much for her in the womb and once she was born, they could begin to figure out what all was wrong and try to help her. They removed fluid one last time from her lungs right before surgery to try to give her the easiest start possible with the least amount of pressure on her lungs.  The proceedure was successful and we went immediately to surgery after.

Originally they had told us Steve could not be present for the surgery and this was really hard for me.  They ended up compromising, saying Steve could be in until the birth of the baby and then he would need to leave - which still terrified me.  At the last minute we asked again and the doctor said she would allow for Steve to stay the whole time which was a huge relief and answer to prayer!

Having a c-section was a surreal expereience.  I didn't realize how much you can actually feel but just without any pain.  Evelyn Grace Houser was born at 11am on January 8, 2013.  She weighed 9.02lbs at birth (at 35 weeks!), mostly due to how swollen she was and how much fluid she was retaining.  Sadly, I wasn't able to see Evelyn Grace after she was born (it was an emergency so no time for holding her up or bringing her over to meet me). I did catch a glimpse of her little purple foot and Steve did his best to describe her to me, most importantly that "she has lots of dark hair!"  I kept picturing her all pregnancy being born with lots of dark hair so that was really fun. 

Because of my post-surgery condition I wasn't able to go see Evelyn until last night but Steve visited at every chance we were given (visiting hours are strict and only are from 5-5:30am, 1-2pm and 7:30-8pm).  She is in stable condition, which we are praising the Lord for.  She seems to improve a little bit every day and the doctors are all very hopeful and optimistic.  A typical Hydrops baby is not given a great outlook but due to how late she was born, her size at birth, and the fact that there was no indication of Hydrops at her 20 week ultrasound or at the ultrasound we had right before traveling to the States (30 week). 

Tomorrow I am being discharged.  Sweet Baby Evelyn Grace needs to continue her care here at the NICU (about an hour and fifteen minutes from our home in Songtan).  The thought of leaving the hospital and leaving her here has been really hard to come to terms with...we are so thankful that she is stable and alive and able to get the care she needs but it will be really hard to return home without our baby girl and know she is so far away without us.  Please continue to pray with us for healing and that the Lord would sustain her and give her life. Please pray the doctors are able to determine a cause and that they would have wisdom in their care plan for her.  Please also pray for us as we return home, leaving the 4th member of our family here and as we try to figure out how we can get up to see her as often as possible. 

Every time we see Evelyn Grace we tell her about all the people praying for her around the world (literally).  It is great to comfort her with all your prayers, and it comforts our hearts too.  She is already one loved and prayed for little girl!  We have felt so blessed by the outpouring of love, support, concern, care and prayers that we have received.  Thank you to each of you.  If you've written us a note or email, please know it has meant SO much to us.  We haven't had time/ability to respond to each one but please know that they mean absolutely so much to us.