Aimee and Grace are 24 weeks along now. This always used to be a major milestone in my head; as a PICU/NICU nurse I know that a baby at 24 weeks can survive out of the uterus (requiring medical support, of course). At 24 weeks my baby would have developed all of the organs and systems that we have as adults. If my pregnancy made it to 24 weeks I would most likely get to take a beautiful baby home. I wish with all my heart that this was the case now.
I know I've been rather silent but honestly there's not a whole lot to say or update you on. A couple weeks ago the final amniocentesis results came back as conclusive for the diagnosis they gave us at the very beginning: thanataphoric dysplasia This wasn't a shock, really, as every specialist we have seen has prepared us for this diagnosis. It was just another reminder of the reality at hand.
The doctors continue to check in on the babies and myself every two weeks. If it weren't for those silly numbers on the bottom of the ultrasound screen that scream that their bones aren't long enough, my babies look perfect. (p.s. Giving out ultrasound photos or videos at the public hospital isn't very routine so I haven't asked them for that special favor again yet...)
Annelise continues to be the energetic, wonderful girl that she is. With a rapidly expanding belly, chasing her around decidedly uses up all my energy. That said, I have started doing a few shifts as a Casual RN at Sydney Children's Hospital on days that Jeff is home. I have found it to be a welcome change of routine. It would serve as a better 'distraction' if the oversized basketball called my belly didnt greet everyone I meet. :) For the most part I have decided to pretend to be a normal pregnant woman in my conversation with people at work, particularly patients' parents. Every child in Sydney Children's Hospital is so sick that their parents are already dealing with enough grief and sadness. Sometimes the pretending is fun: laughing about how busy three kids under 18 months will make me or how amazing it is to be a mom or how much fun my husband will have with a house full of women. :) And sometimes it makes me sob my eyes out on my drive home.
We want to thank you, our friends and family, for your love and support. I have tried to put myself in your shoes....how would I encourage you? Love you? Check in on you? What would you need? I too would have NO idea what to do or say. There is nothing, really, so thank you for just loving us as we get through this together. You could pray for us. Pray for patience for me personally in this pregnancy. I honestly don't know how it is humanly possible for my skin to stretch any further...but it still has 3 months of growing to do. Yikes. Pray for both Jeffrey and I in our responses to people's reactions and thoughts on our situation: pray that we might not be hurt if they don't agree with our decision but be loving and strong enough to share our Hope with them.
24 Weeks
May 21, 2014
Dear Aimee and Grace
Good morning my beautiful girls. I'm sitting here drinking coffee as your sister tears apart her room in "quiet time." :) I think about you both all day long but especially now because this always seems to be "me and you" time. You are moving around in there...maybe stretching or pushing each other, taking advantage of the fact that I am finally sitting and resting. :)
We found out many weeks ago that you won't be with us for long. It was the worst day of my life.
I love you. I miss you already. I miss you because I won't get the chance to see you smile or crawl or try food or take your first steps. I don't get to hear about your first dates or your dreams of what you will become or to cry tears of joy on your wedding days. I wish you got to experience love from a good man like your daddy or the depth of love you didnt know possible when you have babies of your own. I need to remember, though, that you will go be with Love Himself. Someday, when I come join you, you'll say "Mom, see? This is better than anything! Why were you so sad?!"
Your daddy adores you. When he lays his head on my tummy to talk to you and waits patiently for you to move in response, I can tell that everything else fades away. He is smitten with his girls. :)
You both seem to get very excited by a bit of adrenaline (like your sister :)). You went crazy on the back of daddy's motorcycle! You also really like ice cream right now which is a sign of good taste.
I wish I got to know both of you. I'm sure you are very different...maybe one of you would rather read and create over running and swimming? Maybe one of you would love the surf like daddy or love to bake like mom.
You both have a lot of relatives around the world I wish you could meet. They all love you deeply.
Well my sweet princesses, quiet time is over. On with a busy day. Let's have fun with your sister!
I hope you know how much your mama loves you. I always will. xoxo
Video of Annelise a couple weeks ago :)
I know I've been rather silent but honestly there's not a whole lot to say or update you on. A couple weeks ago the final amniocentesis results came back as conclusive for the diagnosis they gave us at the very beginning: thanataphoric dysplasia This wasn't a shock, really, as every specialist we have seen has prepared us for this diagnosis. It was just another reminder of the reality at hand.
The doctors continue to check in on the babies and myself every two weeks. If it weren't for those silly numbers on the bottom of the ultrasound screen that scream that their bones aren't long enough, my babies look perfect. (p.s. Giving out ultrasound photos or videos at the public hospital isn't very routine so I haven't asked them for that special favor again yet...)
Annelise continues to be the energetic, wonderful girl that she is. With a rapidly expanding belly, chasing her around decidedly uses up all my energy. That said, I have started doing a few shifts as a Casual RN at Sydney Children's Hospital on days that Jeff is home. I have found it to be a welcome change of routine. It would serve as a better 'distraction' if the oversized basketball called my belly didnt greet everyone I meet. :) For the most part I have decided to pretend to be a normal pregnant woman in my conversation with people at work, particularly patients' parents. Every child in Sydney Children's Hospital is so sick that their parents are already dealing with enough grief and sadness. Sometimes the pretending is fun: laughing about how busy three kids under 18 months will make me or how amazing it is to be a mom or how much fun my husband will have with a house full of women. :) And sometimes it makes me sob my eyes out on my drive home.
We want to thank you, our friends and family, for your love and support. I have tried to put myself in your shoes....how would I encourage you? Love you? Check in on you? What would you need? I too would have NO idea what to do or say. There is nothing, really, so thank you for just loving us as we get through this together. You could pray for us. Pray for patience for me personally in this pregnancy. I honestly don't know how it is humanly possible for my skin to stretch any further...but it still has 3 months of growing to do. Yikes. Pray for both Jeffrey and I in our responses to people's reactions and thoughts on our situation: pray that we might not be hurt if they don't agree with our decision but be loving and strong enough to share our Hope with them.
24 Weeks
May 21, 2014
Dear Aimee and Grace
Good morning my beautiful girls. I'm sitting here drinking coffee as your sister tears apart her room in "quiet time." :) I think about you both all day long but especially now because this always seems to be "me and you" time. You are moving around in there...maybe stretching or pushing each other, taking advantage of the fact that I am finally sitting and resting. :)
We found out many weeks ago that you won't be with us for long. It was the worst day of my life.
I love you. I miss you already. I miss you because I won't get the chance to see you smile or crawl or try food or take your first steps. I don't get to hear about your first dates or your dreams of what you will become or to cry tears of joy on your wedding days. I wish you got to experience love from a good man like your daddy or the depth of love you didnt know possible when you have babies of your own. I need to remember, though, that you will go be with Love Himself. Someday, when I come join you, you'll say "Mom, see? This is better than anything! Why were you so sad?!"
Your daddy adores you. When he lays his head on my tummy to talk to you and waits patiently for you to move in response, I can tell that everything else fades away. He is smitten with his girls. :)
You both seem to get very excited by a bit of adrenaline (like your sister :)). You went crazy on the back of daddy's motorcycle! You also really like ice cream right now which is a sign of good taste.
I wish I got to know both of you. I'm sure you are very different...maybe one of you would rather read and create over running and swimming? Maybe one of you would love the surf like daddy or love to bake like mom.
You both have a lot of relatives around the world I wish you could meet. They all love you deeply.
Well my sweet princesses, quiet time is over. On with a busy day. Let's have fun with your sister!
I hope you know how much your mama loves you. I always will. xoxo
Video of Annelise a couple weeks ago :)
Dear sweet Angela Kristine, Our hearts go out to you and your precious family, and are so touched by your words here. God sees all and knows all; His heart is towards you; He has not forgotten you, and we continue to pray for a miracle, because He tells us to ask. Drs could be right in their diagnosis but we can always leave room for Him to do anything. So that is what we do, and we still pray for His immeasurable grace for you each day to carry Aimee and Grace for as long as He sees it best for them and you. We send our love and prayers many times daily~~~ mom and dad
ReplyDeleteand your bestemor says she prays for the same~~~ God is big! Gud er stor!!!!!!
My beautiful sister, we love you and your gorgeous family so very much...Thank you for sharing your heart. God holds those precious little girls, and they are already experiencing a taste of His love through amazing parents, and yes, the big sister love taps and tummy kisses!
ReplyDeleteWe continue to pray for you and Jeffrey everyday... for strength, for comfort, for your marriage, for Jesus to be what you want and pursue and see through all of this.
Love you sister. Wish I could drain the ocean.
Awe, that video was precious! And I love seeing pics of your pregnancy, sweet friend. This blog entry, as all your other ones, made me cry! What a strong woman you are, and a wonderful man Jeffrey is too. Wish we were there to distract you and love on you guys!! Hugs from Co.
ReplyDeleteloving on you guys across the sea and praying for your hearts!
ReplyDeleteSending you hugs from Hillsboro! We will continue to lift your family up in prayer.
ReplyDeletelove love love. and Annelise is one smart cookie. ;) HUGS, dearest.
ReplyDeleteOh my goodness, that's EXACTLY what Zoe does! She must always go straight to the source when she's hanging out with her brother, no matter how many shirts i'm wearing. :) Annelise is such a little sweetie, and I love that you'll have videos like these to treasure in the days to come.
ReplyDeleteDear Angela and Jeffrey,
ReplyDeleteYesterday, I attended the Bible Study group at our congregation. We are studying the Word of God as written in the first letter to the Thessalonians (4:13-5:11). In preparation, I had been thinking about the significance of the resurrection for me. It seems to me that as we think about ‘our Christian hope’ our thoughts are more focussed on being with Jesus after our death than about our resurrection together to be with the Lord in the new heaven and the new earth. We all are ‘living beings’ but we are also individuals known by God and loved by God. Because Christ died for us, we may be as certain as Job was that “after our skin has been destroyed, yet in our flesh we will see God” (Job 19:26).
As you wrote Angela, Aimee and Grace will not experience life as we know it. They will miss out on new experiences like the pleasure of strawberries and cream and the horrible taste of Brussels sprouts or the terrors and joys of skiing. But they will not miss out on the joy of being with Jesus immediately after their brief(?) time with us, but also with Jesus and us in the resurrection. Then we will all rejoice with them and you both and with so many others from this valley of tears and sorrow as they say:-
"Mom, see? This is better than anything! Why were you so sad?!"
Jesus (Luke 20:34) said, “The people of this age marry and are given in marriage. But those who are considered worthy of taking part in the age to come and in the resurrection from the dead will neither marry nor be given in marriage and they can no longer die; for they are like the angels. They are God's children, since they are children of the resurrection”.
Angela and Jeffrey, we grieve with you for the loss of all that you anticipated in the lives of your little ones, but we and you “do not grieve like the rest of mankind, who have no hope”. (I Thes 4:13)
Uncle Nick
Hi Angela,
ReplyDeleteJust wanted to say that I enjoyed reading your blog. I don't know you (I attend PBC pm) but I'm inspired by your bravery and strength. I am praying for you and your family of five. May God bless you in ways that surprise you, and thank you, Jesus, for the hope we have in heaven.
Love from Abby