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.
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:
 |
| 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.
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.
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):
Steve visiting Evelyn Grace (Saturday afternoon):
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