Last Sunday I was in the nursery when a woman walked in and started talking to the nursery worker, “You know that baby, Emily? She is three pounds now! And that was a few days ago, she is probably bigger…isn’t that great news?” At that point, she looked up and saw me. I smiled and we talked about Emily for a little while. This experience blessed me and as I worshiped in the service, I started crying and thanking the Lord for that woman. But, I didn’t understand why I was crying and if you know me, you know it bothered me.
Over the past week, I have found some words to describe it: there is something very humbling about being in a place where you NEED other people. A place where you know the only reason you are surviving is because others are lifting you up in prayer. A place where you know the very life and future of your child is in other’s hands. And personally, it is a little scary. Why? I guess because I am faced with my own frailty and the reality that I’m not self-sufficient. I normally live in the comfort of the control I get from being self-reliant. I cannot lie, I really like to think I can do it all on my own. It’s a humbling spot to be forced to swallow my pride and admit I need others.
And as if needing people isn’t humbling enough, there is another level to it..something that is even more humbling: when the reality that others are willing to do that for me and my family hits me, I get overwhelmed with gratitude. I can’t really describe it, but other people (you) are vesting their time and energy to make sure MY little girl is always before the Lord. They are concerned about my daughter and mourn with me when she is doing poorly and rejoice with me when she is doing well. I cannot be in prayer for my baby 24 hours a day but I know the Lord is reminded of her that often. I love the fact that he is being ‘pestered’ about her constantly.
But why does that goodness make me cry? Have you ever seen the Lord of the Rings movies? At the end of the journey, there is a point when Frodo and Samwise are climbing up the side of the volcano and they have both decided it is too hard and they quit. Then suddenly, Sam gets up and looks at Frodo and he says, ”I can’t carry it (the ring), Mr. Frodo, but I can carry you.” And he picks him up and starts carrying him to the top of the mountain. That is how I feel. I have been picked up and I am being carried up the side of the mountain. I would much rather be Sam, but I find I am Frodo. I KNOW I can’t climb this hill on my own and it humbles me and my gratitude for all of you overwhelms me to the point that my only response is tears. I wish there were stronger words to thank you for holding our baby and us up in your prayers, but we haven’t invented them yet. So thank you – for your prayers, for meals, for cleaning my house, for babysitting my kid, and for never giving God a moment to forget my little girl – thank you.
The life and adventures of two former MK's...and their new additions. Our first daughter was born full-term on Jan 19, 2009 and 10 short months later, our micro-preemie was born Nov 6, 2009 at 24w3d and 1 pound 6 ounces. Read her story and our journey below.
Saturday, January 09, 2010
Friday, January 08, 2010
No Lines
My baby is 34 weeks old today and for the first time in her 9 weeks, she is needle free!! Yes, they took her IVs out today. She even lost an ounce once they removed all the tape and lines running into her! It is not a guarantee since they switched all of her meds except one to oral. The one they couldn't switch is the one that helps her to pee. If she can't do it on her own, they will have to put the line back in, but we are giving it a shot.
Today I held her for almost two hours and she even spit up a little on me after she ate...awwww, I'm a mom of an infant...I smell like throw up. They are adding some fat and calories to my breast milk to help her gain weight faster but she is eating about an ounce every three hours. I even have to take milk INTO the hospital tomorrow for the first time in two months. She also has to continue eating or she will need the nutrients from the IV again.
Remember how I said I am trying to live every day in the moment? Well, this moment is good. I know that my child could have a ton of problems when she comes home, but right now, she is eating, pooping, breathing, gaining weight and generally doing well. She is too young to know what her problems may be, so for this brief interval, I am holding my baby and she is a healthy, normal infant. And I am cherishing these feelings and really enjoying it. I am going to stay here as long as I can before reality comes knocking.
My milk is working its way back up for those praying about that. Thank you!
Today I held her for almost two hours and she even spit up a little on me after she ate...awwww, I'm a mom of an infant...I smell like throw up. They are adding some fat and calories to my breast milk to help her gain weight faster but she is eating about an ounce every three hours. I even have to take milk INTO the hospital tomorrow for the first time in two months. She also has to continue eating or she will need the nutrients from the IV again.
Remember how I said I am trying to live every day in the moment? Well, this moment is good. I know that my child could have a ton of problems when she comes home, but right now, she is eating, pooping, breathing, gaining weight and generally doing well. She is too young to know what her problems may be, so for this brief interval, I am holding my baby and she is a healthy, normal infant. And I am cherishing these feelings and really enjoying it. I am going to stay here as long as I can before reality comes knocking.
My milk is working its way back up for those praying about that. Thank you!
Thursday, January 07, 2010
Prayer Requests
I have been asked by several family members to give an update on the ways to best pray for EG. So, I have narrowed them down to the top 4. The reason for 4 is because there are 4 requirements for her to get out of the hospital and oddly enough, they correspond quite well. :) She is not anywhere near close to coming home so don't think I am saying that...
1) She has to be able to regulate her own temperature. She is still in the incubator for this reason...to keep her environment stable.
2) She has to be able to breathe on her own. The vent she is currently on is called a CPAP and is nasal, so she is not intebated anymore but she is definitely still being assisted. She also has to stop forgetting to breathe.
Emily has a chronic lung disease called BPD. It is a result of her undeveloped lungs being placed on a ventilator (and the necessary oxygen) for such a long time. Her lung tissue has formed incorrectly and is scarred. The drs can see this on her chest x-rays and she will have this damage and scarring for the rest of her life. HOWEVER, her lungs will continue to develop for the next 5 years and no one knows if the new tissue will grow in healthy or damaged. The extent to which this affects her can vary from needing inhalers (and monthly shots during flu season)to needing oxygen assistance for the rest of her life.
We can't yet predict what kind of kid she will be and there are a lot of factors that will determine that (like how often she gets sick in the next few years, how well she functions using less of her lungs than everyone else, and how soon she can begin breathing on her own). As the dr said, "She's not going to be an olympic marathoner, but the rest we just don't know yet". It is a "wait and see", imagine that!
3) She has to be able to nipple all her feedings. That means she has to learn how to suck. The best description I have heard yet is a comparison to someone who has had a stroke. We have to teach them to swallow and eat and do everything all over again. The brain of a baby born this early hasn't had the chance to develop that far and so developmentally, we have to teach them everything...including how to suck, swallow, and breathe. Then, she has to be able to eat everything she needs without throwing it up...reflux is a big problem with these babies. This is likely to be the last thing that comes together for her.
4) Her heart has to stop stopping. She doesn't do this real often anymore but apparently it can come and go as they learn to eat.
In other news, we will find out about her eyes this week...she has her third eye exam to determine if she needs laser surgery. Oh yeah, those aren't developed either (there is a reason they are supposed to stay in there for so long...there is a lot to develop). If you want to look this one up, it is called ROP and the damage to the eye can range from needing glasses to complete retinal detachment (blindness).
Now, if any of you are feeling overwhelmed, it is okay...I have had two months to absorb all this. And as I told my Bible study ladies today, I have to choose to live ONE DAY at a time or it just gets too big. So, TODAY, Emily is still doing really well. She is 3 pounds 10 ounces and is eating 20cc (2/3 ounce) of milk every three hours. She isn't desatting as much and her blood gases are looking good (she is breathing well).
Last but not least, after I spend time thinking about her future, I have to remind myself and all of you about the statement that always comes to my mind, "BUT...and this is ONE BIG BUT, we still have the x-factor. He is my x-factor and He is our x-factor and He is most definitely EG's. He is bigger than all this and everything that is said about my little girl has to be taken with a grain of salt because ultimately, whatever is going to happen and whatever comes of this, it has to pass across God's desk first. He has to approve it and at any moment, He can decide to heal and reverse anything He wants. So, the above is what is true in our world, but don't forget whose got our back. And just in case He wants to change any of this, remember, it is not set in stone. Let's know this, let's pray against it, and let's wait and watch what he is going to do."
Thank you for your prayers! And keep me in mind too as I head back in to get a second opinion on my health on monday (I am feeling good, just still having issues related to the surgery).
1) She has to be able to regulate her own temperature. She is still in the incubator for this reason...to keep her environment stable.
2) She has to be able to breathe on her own. The vent she is currently on is called a CPAP and is nasal, so she is not intebated anymore but she is definitely still being assisted. She also has to stop forgetting to breathe.
Emily has a chronic lung disease called BPD. It is a result of her undeveloped lungs being placed on a ventilator (and the necessary oxygen) for such a long time. Her lung tissue has formed incorrectly and is scarred. The drs can see this on her chest x-rays and she will have this damage and scarring for the rest of her life. HOWEVER, her lungs will continue to develop for the next 5 years and no one knows if the new tissue will grow in healthy or damaged. The extent to which this affects her can vary from needing inhalers (and monthly shots during flu season)to needing oxygen assistance for the rest of her life.
We can't yet predict what kind of kid she will be and there are a lot of factors that will determine that (like how often she gets sick in the next few years, how well she functions using less of her lungs than everyone else, and how soon she can begin breathing on her own). As the dr said, "She's not going to be an olympic marathoner, but the rest we just don't know yet". It is a "wait and see", imagine that!
3) She has to be able to nipple all her feedings. That means she has to learn how to suck. The best description I have heard yet is a comparison to someone who has had a stroke. We have to teach them to swallow and eat and do everything all over again. The brain of a baby born this early hasn't had the chance to develop that far and so developmentally, we have to teach them everything...including how to suck, swallow, and breathe. Then, she has to be able to eat everything she needs without throwing it up...reflux is a big problem with these babies. This is likely to be the last thing that comes together for her.
4) Her heart has to stop stopping. She doesn't do this real often anymore but apparently it can come and go as they learn to eat.
In other news, we will find out about her eyes this week...she has her third eye exam to determine if she needs laser surgery. Oh yeah, those aren't developed either (there is a reason they are supposed to stay in there for so long...there is a lot to develop). If you want to look this one up, it is called ROP and the damage to the eye can range from needing glasses to complete retinal detachment (blindness).
Now, if any of you are feeling overwhelmed, it is okay...I have had two months to absorb all this. And as I told my Bible study ladies today, I have to choose to live ONE DAY at a time or it just gets too big. So, TODAY, Emily is still doing really well. She is 3 pounds 10 ounces and is eating 20cc (2/3 ounce) of milk every three hours. She isn't desatting as much and her blood gases are looking good (she is breathing well).
Last but not least, after I spend time thinking about her future, I have to remind myself and all of you about the statement that always comes to my mind, "BUT...and this is ONE BIG BUT, we still have the x-factor. He is my x-factor and He is our x-factor and He is most definitely EG's. He is bigger than all this and everything that is said about my little girl has to be taken with a grain of salt because ultimately, whatever is going to happen and whatever comes of this, it has to pass across God's desk first. He has to approve it and at any moment, He can decide to heal and reverse anything He wants. So, the above is what is true in our world, but don't forget whose got our back. And just in case He wants to change any of this, remember, it is not set in stone. Let's know this, let's pray against it, and let's wait and watch what he is going to do."
Thank you for your prayers! And keep me in mind too as I head back in to get a second opinion on my health on monday (I am feeling good, just still having issues related to the surgery).
Tuesday, January 05, 2010
She's SO big!!
M got to see EG for the first time in two weeks! His only comment for the first several minutes was, "I can't believe how big she has gotten!" Then he got to hold her! :)
"Hey Dad! What's up?"
This is really what it looks like when we hold her...covered faces and snuggled under blankets while looking at her through a mirror.
She is eating 10cc every 3hrs and until she says no, they are increasing by one cc every 12 hours. She weighs 3 pounds, 9 ounces and other than the rattle that is her lungs, is doing well.
"Hey Dad! What's up?"
This is really what it looks like when we hold her...covered faces and snuggled under blankets while looking at her through a mirror.
She is eating 10cc every 3hrs and until she says no, they are increasing by one cc every 12 hours. She weighs 3 pounds, 9 ounces and other than the rattle that is her lungs, is doing well.
Monday, January 04, 2010
Lactation
Em is doing really well. She is up to 8cc/3hrs of milk and they are increasing to 9cc tonight. This is great, not just cause it means she is eating and growing, but because my freezer is FULL of breast milk. Literally, we bought a chest freezer just to put breast milk in it and it is about two weeks from overflowing. This HUGE blessing is also why I am writing today too. My daily production has started falling off in the last 10 days and I am getting quite concerned. We are so close to her starting to try latching on and all that, we just need more time.
The lactation consultant told me I needed to get back in to see the dr as it may be linked to some lingering issues I am having from the surgery so I will do that ASAP. But in the mean time, we have access to the God of the Universe, the God of miracles and I was wondering if we could all just ask Him for a little more milk. I want to have a serious storage problem! :)
The lactation consultant told me I needed to get back in to see the dr as it may be linked to some lingering issues I am having from the surgery so I will do that ASAP. But in the mean time, we have access to the God of the Universe, the God of miracles and I was wondering if we could all just ask Him for a little more milk. I want to have a serious storage problem! :)
Walking!!
It's official...K is walking all over the living room!! Such a big girl! They say late crawlers are early walkers...she definitely held up to that billing! Two months ago (9.5mo), K started crawling...now at 11.5mo, she is toddling all over. 
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