Sorry I was so negative yesterday...I am getting quite discouraged about this whole thing and I expressed it poorly. We keep describing this as a roller coaster but lately, instead of ups and downs, it seems to me that things are just steadily getting worse. I called in last night to talk to the night nurse (the only one who has been with her from the beginning) to voice my concerns and I got a lot of straight answers.
I told her that at this point (working on week 6), I was starting to get worried since things just really aren't improving and she told me that she agreed that a little worry is appropriate...she has been feeling the same way. We just can't seem to get her to any of the milestones we are looking for. Last night when they tried to adjust her oxygen, she was so intolerant that they had to put her back up to 100% for several hours (she hasn't been that high since she was first born). Everything they try with the ventilator and her gases pretty much backfires. They continue the morphine and blood transfusions and the like and we just aren't seeing any improvement. The longer we go without SOMETHING working, the worse it gets.
BUT, the nurse was also quick to point out that she is 'quite a fighter'...I don't know why she keeps saying that so I have to assume some babies must just quit at this point or something. Her heart is strong and she hasn't had a brain bleed yet. She likes my breast milk and even tries to suck on the q-tip when they put it in her mouth (they swab her mouth a couple times a day). She thinks that if her bowel heals and we can feed her, she will be a good eater and start putting on the weight she needs. We have to wait for Monday's x-ray before they decide when they will try food again. And, well, she's still here and still fighting.
As you pray for us, pray against discouragement and fear. There is a paradox in the situation: at any moment, she may die, and yet she is still here and still living. In an attempt to wrap your mind around it and cope emotionally, you go through phases of 'accepting' her death and then 'denying' or fighting it with all your might. It just seems like we cycle through all the emtions of dealing with the death of our child and yet there is no death and therefore no closure and no way to begin moving on. I am realizing once again how fragile I am...I survive only because God sustains me. When I look at God, I am fearfully rested. He is in control. But when I lose my focus and look at myself, I just wonder when I am going to get crushed under the weight of this.
Thanks for listening. Thanks for your prayers and your constant support. When this 'time' is over and we all get to look back, my prayers are that we watch a precious little girl run and play and thank our God for the life he spared. God bless you all on this day. Look at your children and praise the Lord for every one of them!!
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.
8 comments:
Thanks for sharing your heart. We are lifting you up. I know that God is in the rollercoaster right next to you. He knows what ups and downs are ahead, and He will keep holding your hand through it. Your faith and trust is an encouragement to ME. Love you guys.
We prayed for you and Emily in Sunday school class this am plus others asked about you at church saying they were remembering you each day in prayer. In the service Pastor Todd spoke about "Mary, Did you know?" from Luke 1:26-38. She not only had Jesus in her heart (a common statement of Christians it seems) but she actually CARRIED Him (in her womb) for 9 months!! I was struck again when I read verse 37.."For nothing is impossible with God." He knows and loves Emily Grace and what/how much you can take. Our SS teacher is a retired NICU nurse so I ask questions. She has seen how these little ones can be this way and then one day it's like they have had enough and there is a big turn around and they do just fine. They want to live and get on with life!-- fighters! Also she reminded me how many prayers her caregivers have prayed for EG too as they care for her.
Thanks for your honesty in your sharing of your thoughts and concerns. My heart goes out to you praying God to give you the grace to trust Him believing in His healing of EG. "Nothing is impossible with God." Hugs to you.
What a heartfelt sharing of "just the way it is" when you have a child fighting for life. We can understand your heartache, and also know how real is the comfort of our Saviour. Isaiah 41:10 remains a favorite verse for our family: "So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Praying,
Our kids know of Emily and ask to pray for her often. We continue thinking about all of you. With love,
Aaron, Mariela, Kobin and Melany.
Dear Micah and Becky,
In reading the comments others have left, I'm encouraged by their wisdom and grasp of how to encourage you.
I just want you to know that an entire church here in Pacifica asked about EG once again today. They haven't forgotten their concern or ceased to pray.
We love you, and will pray just as you have asked, believing Him to answer.
Love,
Dad
Brave little Emily, it hurts to see you out there struggling already and almost single-handed with all the hard parts of being human, not like those lucky big comfortable babies who don’t yet have a clue that they’re broken creatures in a broken world and all flesh is as grass here today and withered tomorrow and all the rest of it. Looking at your little body makes me think about what’s the bottom line on being alive, why are you fighting so hard, why are we all born just to suffer and die sooner or later, what’s the purpose, what makes it worthwhile? I hope you were born to wrestle with your sister and take care of your grandchildren; I know that at minimum, as the catechism says, you were born to glorify God and enjoy him forever. I hope that you will come quickly through this awful stage and go on to a long happy life followed by a joyous eternity; I know that at minimum you will experience the goodness of the Lord, not only in the future or in heaven but now. Psalm 27:13 keeps coming to my mind for you, not a prayer so much as a battle cry or a cheer. Here it is, in several translations:
Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.
I would have despaired unless I had believed that I would see the goodness of the LORD in the land of the living.
I had fainted, unless I had believed to see the goodness of the LORD in the land of the living.
But I know I will live to see how kind you are.
I am certain that I will see the LORD's goodness in the land of the living.
Here is something I am still sure of. I will see the Lord's goodness while I'm still alive.
I believe that I will see the goodness of the Lord in the land of the living. Be strong, take heart, wait for the Lord.
Love, Suzy Lazicki
Beautifully written my sister and friend. I sit here aching for you and wishing God could give me some of your pain so I could carry it for you and take some of the burden from your shoulders. My constant prayer is that Emily Grace rests in the hands of God and that He and HE alone decides her future. I will be praying even more this week for you that your heart will guarded with the peace of Jesus. Remember we are up and awake by 3:30 your time if you ever want to talk.
Oh dear ones,
we love you four and we are praying. Seems like that's all I ever have to post for you guys but it is so true. May you be fearfully rested, and graciously strengthened beyond what you can even think of....
trusting his grace for you all-
Matt and Jill
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