Lucy's Light
Our story of life with our little girl, Lucia, aka "Lucy", who was diagnosed at 20 weeks with Mosaic Trisomy 16, a congenital diaphragmatic hernia, tetralogy of fallot, and IUGR.
Friday, June 29, 2012
Three months
It's been over three months since Lucy went home and I can honestly say that I am feeling much better. I thank God for the people who have helped us through this. It really has been a time of testing and I know I haven't passed all of the tests with flying colors, but I feel like the fact that I am able to make it through the day without crying is great! I know that Lucy is with God and that is the best place she could be. We appreciate your continued prayers as we try to live lives that will allow us to be with Lucy again someday in Heaven.
Saturday, April 14, 2012
Saying Goodbye
I know that as soon as Lucy's heart stopped and she stopped breathing that God took her home, but there is a part of me that was horrified thinking of her little body laying in a cold, dark place somewhere in a funeral home waiting on paperwork, of all things, to be dealt with. Last week we finally got all the paperwork together and they cremated her remains. I picked them up yesterday. It was horrible. I almost couldn't go in, but I did. Now the little box is sitting on top of our new to us piano (thanks to my aunt Suzy!), and I really have no idea what to do with them. I wish I would have spent more time with her before we gave her back. My husband wanted to give her back before she had even passed and I refused, but I didn't want to hurt him any more than he was already hurting, so I spent 5 little minutes with just the two of us and prayed over her and then everyone came in and I let them take her. I also think maybe we did the wrong thing in having the c-section. I could have insisted on monitoring or I could have just waited for her to pass in utero. Maybe that would have been the best thing for her. I really don't know. I suppose this is the hard part they were talking about.
I know things will be ok eventually, but I guess I'm just hurting worse than I thought I would. Please keep praying for us. Thank you to everyone who has sent us cards, sent emails, brought food, and reached out to us. We see God in you and it is keeping us sane. I thank God for my mother who insisted on coming and surprised us both by her physical and emotional strength. I sent her home today and I think that's why it's been such a rough day. I didn't think I needed my Mama anymore, but I have needed her and I really appreciate her spending the time and money and energy to come out here and love us and cook and clean and play with Isaac. I also thank my cousin, Sarah, for checking on us so often and helping with Isaac, and my aunt Marilyn who came the first two days and wore Isaac out entertaining him so well. All of this love has made me realize how lazy I have always been about helping those around me who are hurting. I plan on doing a better job from now on, because the help we've received has meant so much to us.
I know things will be ok eventually, but I guess I'm just hurting worse than I thought I would. Please keep praying for us. Thank you to everyone who has sent us cards, sent emails, brought food, and reached out to us. We see God in you and it is keeping us sane. I thank God for my mother who insisted on coming and surprised us both by her physical and emotional strength. I sent her home today and I think that's why it's been such a rough day. I didn't think I needed my Mama anymore, but I have needed her and I really appreciate her spending the time and money and energy to come out here and love us and cook and clean and play with Isaac. I also thank my cousin, Sarah, for checking on us so often and helping with Isaac, and my aunt Marilyn who came the first two days and wore Isaac out entertaining him so well. All of this love has made me realize how lazy I have always been about helping those around me who are hurting. I plan on doing a better job from now on, because the help we've received has meant so much to us.
Tuesday, March 27, 2012
Lucy's Heaven Day
Lucia America "Lucy" was born yesterday via repeat c-section at 2:10. She weighed 1 lb 1 oz and was 11 inches long. She was examined, cleaned up, wrapped up, and passed to my husband. On the outside, she was perfect except for a tiny skin tag in the middle of her little chest. She was so tiny and so skinny still, but she was absolutely beautiful to me. It's amazing to me that human beings can be such tiny, but well formed creatures. She had tiny hands and feet and even fingernails and toenails. She had a little bit of dark hair, but she had blondish red eyebrows and very blonde eyelashes. Her eyes were big, just like Isaac's and she had her big toe and second toe spread apart on one foot like he liked to do when he was a newborn. Her little ears were just perfect, every little crease and detail so exact. After they sewed me up, the took me back to the room with Lucy in my arms. We got to spend just a little over an hour with her before she went home to be with God. We had a chance to take some pictures, and a very nice lady named Sharon from Now I Lay Me Down to Sleep was there in the OR and the room to take pictures for us. We dressed her up in one of the beautiful outfits from www.jaquispreemiepride.com. I highly recommend this website for anyone who has a preemie or micropreemie. The clothes came super fast and they were just absolutely beautiful and handmade. She spent her last moments with her precious little head resting on my chest, exactly where I wanted her to be. It was the most beautiful and saddest moment of my life, but I will always treasure the chance I had to spend with my little girl. I feel peace that we made the correct decision in deciding on comfort care. I was terrified that she would be stressed or in distress, but she was quite peaceful. The best part is knowing for sure that she is with God now, free from any pain, suffering, illness, worries, heartache, guilt, sin, and separation from God. My selfish side wishes she were still here with me in my arms, but my heart and soul know that she couldn't be in a better place right now.
My husband and I would like to thank everyone who has sent us cards, emails, text messages, comments, facebook messages, flowers, candy, food, and more than anything love and prayers to heaven for us. I woke up early this morning thinking about what a strange and amazing experience this has been. We have truly seen God working through other people to show His love to us. We have seen Him answer prayers asking for wisdom about what to do with Lucy after birth. Despite something that could possibly be the saddest thing I will ever have to experience in this life, I have been filled with amazing joy at the same time by the outpouring of love we have been shown and by all that Lucy has taught us about God and others and ourselves.
Some verses came to mind this morning that I think I never truly understood until now.
Here are a few:
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Oh, and He has filled us with joy and peace in this difficult time!
Philippians 4:7
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
God is guarding our hearts and minds from depression, desperation, and darkness.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
One thing about being in the hospital and being helpless (i.e. legs are totally numb) is that you have to just trust that others will take care of you and give up any sense of guilt or fear that you will be embarrassed by your weakness. Once you just let other take over for a while, it is such a relief to rest and be taken care of when you are not able to do it for yourself. I think that God wants us to be like this ALL of the time with Him, but it is so easy to think we are self-sufficient when things are going well. Therefore, when we are weak with sadness, grief, loss, and helplessness, God can finally take over and show us how great is His power and love for us. I pray that I don't forget this feeling of how wonderful it us to be carried, or that I also need to carry those around me in times of need. And, I thank all of you who are helping to carry our burdens at this time. You are God's hands and feet and arms!
I am so grateful, once again, for all the help we have received, for the kind staff here at the hospital, for our family and friends, and especially our spiritual family. I am grateful for new friends who live far away and have been praying and hoping along with us. I am grateful for my sweet husband who has been very strong for both of us throughout this whole ordeal and has been a rock for our family. I am grateful for my little boy, who reminds me to thank God every day for the blessings I already have and who reminds me to laugh and look at the world with wonder and amazement.
I don't know if I will be posting on the blog anymore, but if I think of something I really need to share, I will.
God bless you all and keep walking with Him. He is the only light and hope in this world, and the only One who can keep us from destruction and spiritual death.
Love,
Becky
My husband and I would like to thank everyone who has sent us cards, emails, text messages, comments, facebook messages, flowers, candy, food, and more than anything love and prayers to heaven for us. I woke up early this morning thinking about what a strange and amazing experience this has been. We have truly seen God working through other people to show His love to us. We have seen Him answer prayers asking for wisdom about what to do with Lucy after birth. Despite something that could possibly be the saddest thing I will ever have to experience in this life, I have been filled with amazing joy at the same time by the outpouring of love we have been shown and by all that Lucy has taught us about God and others and ourselves.
Some verses came to mind this morning that I think I never truly understood until now.
Here are a few:
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Oh, and He has filled us with joy and peace in this difficult time!
Philippians 4:7
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
God is guarding our hearts and minds from depression, desperation, and darkness.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
One thing about being in the hospital and being helpless (i.e. legs are totally numb) is that you have to just trust that others will take care of you and give up any sense of guilt or fear that you will be embarrassed by your weakness. Once you just let other take over for a while, it is such a relief to rest and be taken care of when you are not able to do it for yourself. I think that God wants us to be like this ALL of the time with Him, but it is so easy to think we are self-sufficient when things are going well. Therefore, when we are weak with sadness, grief, loss, and helplessness, God can finally take over and show us how great is His power and love for us. I pray that I don't forget this feeling of how wonderful it us to be carried, or that I also need to carry those around me in times of need. And, I thank all of you who are helping to carry our burdens at this time. You are God's hands and feet and arms!
I am so grateful, once again, for all the help we have received, for the kind staff here at the hospital, for our family and friends, and especially our spiritual family. I am grateful for new friends who live far away and have been praying and hoping along with us. I am grateful for my sweet husband who has been very strong for both of us throughout this whole ordeal and has been a rock for our family. I am grateful for my little boy, who reminds me to thank God every day for the blessings I already have and who reminds me to laugh and look at the world with wonder and amazement.
I don't know if I will be posting on the blog anymore, but if I think of something I really need to share, I will.
God bless you all and keep walking with Him. He is the only light and hope in this world, and the only One who can keep us from destruction and spiritual death.
Love,
Becky
Sunday, March 25, 2012
Last night with Lucy
Tonight is my last night with Lucy in my belly. I feel sad, but I also feel happy for her. I know that she will soon be in the arms of the only other being who can possibly love her more than we do, and I know that He actually has the power to keep her safe and at peace forever. We are sad that we will not be able to enjoy getting to see her grow up, but I know that she will also never have to experience heartache, illness, fear, guilt, or sin. She will never be separated from her God. It's probably the best I could wish for any person. And yet, it just hurts so much. I know that it will and that's normal. And I know that there are so many people praying for us that we are covered in love and support. We really appreciate that. We know that God will heal our hurt in time and that there is no telling what good will come from this, in addition to the fact that there will be one more little soul in heaven tomorrow.
I will try to write tomorrow or Tuesday about how things are going.
Please pray that Lucy's time with us will be peaceful. That's really the only thing that I'm scared of --that she will be in distress or pain. Thank you all for your love and prayers!
I will try to write tomorrow or Tuesday about how things are going.
Please pray that Lucy's time with us will be peaceful. That's really the only thing that I'm scared of --that she will be in distress or pain. Thank you all for your love and prayers!
Thursday, March 22, 2012
Delivering on Monday
The sonogram today showed that the resistance in the umbilical cord was worse, despite a round of steroids yesterday. The doctor wanted to admit me today for monitoring, but I asked to wait until Monday to put things in order at work and home.
So, the plan is I will be delivering on Monday afternoon at Medical City via c-section. He said I could labor if I wanted, but the added stress on the placenta could likely cause stillbirth, so we're opting for a c-section to possibly be able to spend at least a few minutes with her before she goes home to be with God. We have decided not to intervene since she will only be about a 1 pound and no where near big enough to be eligible for surgery. My husband and I feel like the kindest thing we can do is let her go as peacefully as possible without a bunch of tubes and wires that really won't be able to help anyway. We would appreciate no visitors for our first day so we can spend time saying goodbye and mourning as a family. We are planning on cremating her and not having any sort of memorial or funeral service since she will not be spending much time on earth.
Thank you all for your thoughts, prayers, advice, cards, everything that you have done for us. We have definitely felt the love of God through all of your kindness.
We will be taking pictures and will have a photographer on hand to help us make some memories that we will share later with everyone. Thank you for understanding.
So, the plan is I will be delivering on Monday afternoon at Medical City via c-section. He said I could labor if I wanted, but the added stress on the placenta could likely cause stillbirth, so we're opting for a c-section to possibly be able to spend at least a few minutes with her before she goes home to be with God. We have decided not to intervene since she will only be about a 1 pound and no where near big enough to be eligible for surgery. My husband and I feel like the kindest thing we can do is let her go as peacefully as possible without a bunch of tubes and wires that really won't be able to help anyway. We would appreciate no visitors for our first day so we can spend time saying goodbye and mourning as a family. We are planning on cremating her and not having any sort of memorial or funeral service since she will not be spending much time on earth.
Thank you all for your thoughts, prayers, advice, cards, everything that you have done for us. We have definitely felt the love of God through all of your kindness.
We will be taking pictures and will have a photographer on hand to help us make some memories that we will share later with everyone. Thank you for understanding.
Tuesday, March 20, 2012
Mayflies in February and Junebugs in April
Well, everything seems to be coming early this year. The mayflies came around in February, and the pear trees bloomed, too. And it seems my little Junebug will most likely be born in April. The perinatologist told me today that he's seeing high resistance in the umbilical cord and some blood flowing backwards, which means that labor could be as early as 2-3 weeks away. He prescribed me a round of steroids to take tomorrow to mature her lungs and other organs and/or help decrease the pressure in the umbilical cord. Since she only weighs just over a pound, and is only gaining an eighth of a pound a week, this means that she will likely weigh less than a pound and a half a birth. This most likely excludes the possibility of being a candidate for the hernia repair or heart surgery.
After that appointment I met a wonderful lady, Karen, who showed me around the NICU, labor and delivery, and walked me to my cardiologist appointment. It's so nice to have kind people working with you in a time like this.
The new cardiologist, Dr. Laird, was very nice also. He himself spent at least 30 minutes taking images of Lucy's heart after the 20 minutes with the tech, and he talked to me for another 20 minutes or so afterward. He was very thorough and very kind. On the way out of the office I noticed they had a picture on the wall with Isaiah 40:31 and I felt like I had found the right place to be.
After the cardiologist, I saw a geneticist, who was not hopeful at all for Lucy, but she did reassure me that there was very little chance we would ever have a baby with chromosomal abnormalities again if we choose to try again.
I have to go back to Dallas on Thursday (and I have a glucose tolerance test tomorrow, which seems really silly at this point, but I suppose I should go). They will do another ultrasound there and I'll meet my new high risk OB, Dr. Farley. I'm hoping they will say that things don't look as serious as they did today, but no matter what, I know it will be ok.
It's really easy to say that I believe that everything belongs to God, but when it comes right down to it, I realize I haven't really believed it. I have believed that everything is mine, especially my children, but the truth is that none of it is mine. I don't deserve anything. Everything I have is a gift. I have said it many times, but now I need to believe it. The slogan for the Susan G. Komen 3 day walk really irks me: "Because everyone deserves a lifetime." Says who? No one deserves anything. We're given so much that we, that I, forget all the time that God has richly blessed me with too many things to count, especially considering how faithless I have been for periods of time in my life. I'm reminded of what God told the Israelites in Deuteronomy 8, telling them to be careful to remember Him after they had eaten and were satisfied, otherwise they might become proud and start to say that their own effort had brought them riches. And of course, God was right. The Israelites got to the promised land and had everything they could ever want and totally forgot about God and started to believe in themselves and in idols. And I have done the same. But I am nothing but a tiny speck in the scheme of things. The fact that I have a husband, a healthy child, a job, a car, a family, friends, a church family, a roof over my head, more than enough food to eat and clothes to wear is not proof that I have done something right, but rather that God has been extremely merciful and patient with me. And even if I didn't have any of these things, God would still be faithful and merciful.
So, I am thankful for Lucy, though I am pretty certain that she won't be with us for long. But she has reminded me to humble myself before God and remember that I am nothing and deserve nothing.
Here are a couple of verses for today:
Isaiah 40:31
"but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall run and not be faint."
Job 1: 20-21
"Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped9
. And he said, 'Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away. Blessed be the name of the Lord.'"
Friday, March 16, 2012
More things coming together!
Since I last posted, I have officially scheduled my new cardiologist appointment and an appointment with the geneticist for next Tuesday. I will also see the perinatologist on Tuesday if he has time that morning to see me, since he has offices at Medical City and here in Arlington. I also spoke with a nice lady named Leonore (I think!) right when we woke up this morning about how she was planning my visit to the new OB, my tour of the NICU, my meeting with the surgeons, and my meeting with the neonatologists who will be working in the NICU. This will probably all take place Monday of the week after next. Hallelujah! I feel like things are really getting organized, finally. They did tell me I will most likely be going to the OB once a week from now on, but they said they would try to work it out so that I could go see Dr. Trimmer one week and the Dallas OB the next and not have to drive to Dallas every week just yet. Please continue to pray for us! We appreciate all of your support and prayers immensely!
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