We will be heading to MN for the wedding of M's last brother this week...this will be the last one on both sides of the family and I am actually excited about it (if you know me, this is VERY unusual). Anyway, I wanted to update before we left.
So far, Emily seems to be responding really well to the changes we made. I think she likes the taste of the new formula as she is eating again. This is a HUGE relief to me since it is incredibly hard to force feed your baby when she is crying, screaming and arching her back and all you are trying to do is give her milk. Honestly, it is heartbreaking. She has done this on an off since she came home, but after a solid week of it, today she ate all her feedings and it was like a breath of fresh air. I hope it sticks but I've been at this game long enough to not get too excited...just hopeful. The prevacid REALLY seems to be helping as her spit up is dramatically less and she even burps without throwing up most of her milk with it. We even got some pears into her and she pooped all on her own. All this and my happy little baby is back. Yipee!
Thank you for your prayers and I hope to soon have some lovely pics of the GREEN midwest, with TREES!! Man, I miss color!
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, July 10, 2010
Friday, July 09, 2010
Negative is Good!
Emily Grace does NOT have cystic fibrosis. Praise the Lord!!
That means that all of her problems do not fall under a single disease and we will attack them individually. SO, her weight gain is the biggest issue right now. She is in the 20% for length but continues to not be on the charts for her weight (although she is eleven pounds now!!). We are switching the formula that we add to my breast milk to see if she will absorb a different brand better and we are attacking the reflux with prevacid as well as attempting to start her on solids. She is quite young to start solids but if she will eat them, hopefully, we can eliminate the juice from her diet (for constipation) and replace it with milk (which is obviously higher in calories)...and the fruits should help with the constipation as well. Besides the fact that solids should simply be easier to keep down. The only one I don't like is that I am also supposed to start waking her up at night to get one more feeding in each day...SAD, I know. It was nice sleeping for several hours a night. Oh well, it's not like a lack of sleep is unusual in this house.
Thank you for your prayers! Please keep them coming as we pray Emily to healthy toddlerhood.
That means that all of her problems do not fall under a single disease and we will attack them individually. SO, her weight gain is the biggest issue right now. She is in the 20% for length but continues to not be on the charts for her weight (although she is eleven pounds now!!). We are switching the formula that we add to my breast milk to see if she will absorb a different brand better and we are attacking the reflux with prevacid as well as attempting to start her on solids. She is quite young to start solids but if she will eat them, hopefully, we can eliminate the juice from her diet (for constipation) and replace it with milk (which is obviously higher in calories)...and the fruits should help with the constipation as well. Besides the fact that solids should simply be easier to keep down. The only one I don't like is that I am also supposed to start waking her up at night to get one more feeding in each day...SAD, I know. It was nice sleeping for several hours a night. Oh well, it's not like a lack of sleep is unusual in this house.
Thank you for your prayers! Please keep them coming as we pray Emily to healthy toddlerhood.
Wednesday, July 07, 2010
Life
So I got K some doll toys so she can imitate more with a doll instead of her sister...she went crazy this morning. She walked out and saw her stroller, pointed and said, "WOW!!". Then she skipped breakfast so she could push her stuffed bear all around the house...for a while, and then hunger took over. Anyway, when I gave Em a bath, K gave her doll a bath...until she found the potty that came with it. First she tried to sit on it herself and then I told her it was for her doll so she tried that too.
Just some pics
A very serious conversation between sisters.
They must have come to an agreement K was happy with.
Em laughing at mom.
Just some pics
A very serious conversation between sisters.
They must have come to an agreement K was happy with.
Em laughing at mom.
Tuesday, July 06, 2010
B and K have a girls day (Dad watches Em)
Getting ready to leave. K waving "bye diddy!"
Fun times at the park with Zoe.
These two thought it was great fun, stomping their feet on the dirt.
No more pics cause Mom and K went to Toys R Us and played with all the toys for a while and then ate out together...since Mom was alone, only mental pics and great memories were taken. Amongst them, K put a stuffed monkey in a stroller and pushed it all over the store until she saw the basketballs. At which point she stopped, pointed, and said 'that' until Mom got every one down so she could throw them. She is obsessed with balls.
Fun times at the park with Zoe.
These two thought it was great fun, stomping their feet on the dirt.
No more pics cause Mom and K went to Toys R Us and played with all the toys for a while and then ate out together...since Mom was alone, only mental pics and great memories were taken. Amongst them, K put a stuffed monkey in a stroller and pushed it all over the store until she saw the basketballs. At which point she stopped, pointed, and said 'that' until Mom got every one down so she could throw them. She is obsessed with balls.
4th of July
Yesterday Mom, Dad, and Jamie came over for a (5th) of July BBQ. The girls had fun playing with grandpa...
Attempt at a family portrait...
Attempt at a family portrait...
Sunday, July 04, 2010
A Little Fun, A Little Serious
I know that normally preemies have a lower IQ than normal babies, so I decided to start early. :) Such a little smartie pants - reading at 4 months old!
Em rolled over twice from her back to her tummy today. She is doing so well!
This sequence makes me laugh and cringe all at the same time. K is so helpful that she has decided that teaching Em to roll over need not be done only by Mommy and her teacher...she did this yesterday and I freaked out because it looks so harsh, but when I got over to the girls, Emily was smiling and giggling so I supervised and let it go. Today, when she did it again, I got the camera out. Yes, she is rolling her over from side to side and then putting her on her tummy and talking to her so she will lift her head up. What a crazy girl!!
They are going to test Emily for cystic fibrosis this coming week. It's just another test, right? I thought so, but it's killing me. CF is a terrible disease that would take Emily's life way too early.
I watched my baby for weeks, wondering each day if she was going to die or not...wondering if she had a future and if I was going to plan her first birthday or her funeral. The incredible sorrow and heartbreak that I felt for so long nearly broke me. But for the grace of God, it would have. Over the last several months of having her home, I have let it sink in that she has a future and even if she can't do all the things that kids with sight can, everything else is open to her...and that's a LOT in my estimation.
As the reality of this test sinks in, I find myself crying, scared and frustrated. I know I can't handle this again. My heart will fail, I am sure of it. My head hurts from fighting the battle of doubt and frustration. Did we really come through all of that just to turn around and watch her die early from a genetic disease that has no cure? It seems cruel.
And yet God continues to challenge me, "Do you trust me? Do you STILL believe?". I have to say yes, although it is through tears I speak the word. I can't believe how hard it is after all we have been through and to watch God come through over and over and over again, you would think I would be able to say 'of course I do, Father'. I feel like a traitor and it grieves my heart that He even has to ask me again. Didn't I win this battle a million times? Shouldn't it be over? I guess not, so I go back to fundamentals. I declare what I believe and tell Satan to get behind me.
No matter what comes of this test on Thursday, I still believe that what He has for us is the best for all of us. That He planned it out long before I was around and it will bring glory to His name. I still believe He is enough for me and He will give me more and more grace. I still believe He is our healer. I still believe there is hope in the name of the Lord. I still believe nothing is impossible for Him. I still believe He loves my little girl more than I ever could.
And I pray my little heart out every day between now and then that even if she has it now, He will remove it and cure her before that day. David prayed for his son (with Bathsheba) day and night until he died, and then he got up and moved on. I will pray day and night for my little girl until I know for sure and then no matter the outcome, I will move on. Pray with me please. And pray for my failing heart.
I love those girls! Look at those photos again! :)
Em rolled over twice from her back to her tummy today. She is doing so well!
This sequence makes me laugh and cringe all at the same time. K is so helpful that she has decided that teaching Em to roll over need not be done only by Mommy and her teacher...she did this yesterday and I freaked out because it looks so harsh, but when I got over to the girls, Emily was smiling and giggling so I supervised and let it go. Today, when she did it again, I got the camera out. Yes, she is rolling her over from side to side and then putting her on her tummy and talking to her so she will lift her head up. What a crazy girl!!
They are going to test Emily for cystic fibrosis this coming week. It's just another test, right? I thought so, but it's killing me. CF is a terrible disease that would take Emily's life way too early.
I watched my baby for weeks, wondering each day if she was going to die or not...wondering if she had a future and if I was going to plan her first birthday or her funeral. The incredible sorrow and heartbreak that I felt for so long nearly broke me. But for the grace of God, it would have. Over the last several months of having her home, I have let it sink in that she has a future and even if she can't do all the things that kids with sight can, everything else is open to her...and that's a LOT in my estimation.
As the reality of this test sinks in, I find myself crying, scared and frustrated. I know I can't handle this again. My heart will fail, I am sure of it. My head hurts from fighting the battle of doubt and frustration. Did we really come through all of that just to turn around and watch her die early from a genetic disease that has no cure? It seems cruel.
And yet God continues to challenge me, "Do you trust me? Do you STILL believe?". I have to say yes, although it is through tears I speak the word. I can't believe how hard it is after all we have been through and to watch God come through over and over and over again, you would think I would be able to say 'of course I do, Father'. I feel like a traitor and it grieves my heart that He even has to ask me again. Didn't I win this battle a million times? Shouldn't it be over? I guess not, so I go back to fundamentals. I declare what I believe and tell Satan to get behind me.
No matter what comes of this test on Thursday, I still believe that what He has for us is the best for all of us. That He planned it out long before I was around and it will bring glory to His name. I still believe He is enough for me and He will give me more and more grace. I still believe He is our healer. I still believe there is hope in the name of the Lord. I still believe nothing is impossible for Him. I still believe He loves my little girl more than I ever could.
And I pray my little heart out every day between now and then that even if she has it now, He will remove it and cure her before that day. David prayed for his son (with Bathsheba) day and night until he died, and then he got up and moved on. I will pray day and night for my little girl until I know for sure and then no matter the outcome, I will move on. Pray with me please. And pray for my failing heart.
I love those girls! Look at those photos again! :)
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