36 Week Appointment

Heart Rate: 138 bpm Weight: 4lbs. 13oz.
Yesterday's ultrasound revealed that Leah is still growing, but at a much slower rate this past month. Previously she was measuring at the 25% and currently that had declined greatly to just under the 10%. Our Perinatologist said that this growth decline is expected with trisomy 13 babies, and that it typically occurs much earlier.....thus many babies simply stop growing before birth and pass away in utero. However, the fact that Leah's been able to grow longer than most, and we will have reached "Full Term - 37 weeks" on Monday.....we still are looking at a possibility of heading into a live delivery. But on the flipside, there is a chance that her growth will just continue to decline in the coming days, which could cause her to pass away before we deliver. We will have another ultrasound next Wednesday, where her heartrate and other vitals will be monitored more closely to help assess how she is doing. In the event of observable distress, it may be possible to induce labor early. This would be done, with the hopes of meeting her before she goes to Heaven.
So, news of her growth slowing down brings much saddness, even though it's exactly what the doctor's told us to expect back in November. We are so thankful for carrying Leah these past 36 weeks. She has given us the gift of kicks, flips, rolls and hiccups to us in such amazing abundance....far more than we ever could have asked for. When a friend shared back in November that she was praying for "many strong kicks", I never could have imagined the importance of such a prayer. God has been so gracious in allowing me to feel Leah move EVERY SINGLE DAY since our diagnosis, and her movements have begun before I even get out of bed in the morning. I've been able to start each of the past 114 days knowing that Leah was still with us....and able to praise God for the gift of one more day!
We also had a "Team Meeting", which included our Perinatologist, a Neonatologist, and a Nurse from our hospital who will help make sure our wishes for Leah's arrival are carried out. We learned a great deal from the Neonatologist, that will be helpful should Leah survive birth and require breathing and other assistance. We learned that for the majority of Trisomy 13 babies who survive birth, and beyond for minutes, hours or even days, it is quite often with medical assistance within the NICU. Understanding the role the NICU may play in our time with Leah was honestly hard for me to hear, as it required greatly adjusting my prior expectations of our possible time together as a family. Also knowing that I could not immediately hold Leah, should she require NICU care is much harder to grasp than I'd expected. Since she isn't expected to survive very long, my desire to hold her while she is alive is the strongest longing I've ever experienced! God knows I want to get this chance....and how badly I want to have the opportunity to express my love to her...face to face.
In light of our appointments yesterday, we have the following list of prayer requets:
* God's comfort and peace upon our family as we are experiencing the increased intensity of emotions as Leah's arrival draws near.
* Strength for Leah to survive delivery and be able to breathe on her own.
* The opportunity for us to hold Leah while she's alive.
* That God would make all the Life/Death type decisions in His sovereignity. (These are not the types of decisions ANY parent should have to make!!!)
I find comfort in scripture....for in Roman's 8:16 it says, " I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. The creation waits in eager expectation for the sons of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God.
We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. "
********************************************
I've often had dreams (nightmeres) about tidal waves. Even though I don't live near the coast, I guess it's always been one of my greatest fears. Lately, the analogy of my dream and our current situation keep coming to mind.
I feel like our family is standing on an island. We've been told that a deadly tsunami is headed directly towards our island. With all the modern technology, it is known how strong this storm is and the damage it will cause. It is also known that the tsunami safe zone where wer'e are all gathered and waiting, simply isn't high enough to protect us. Weather models are predicting that the tidal waves will be so large that they will completely cover even this highest location on the island.
We know what we are bracing for, and we can do nothing to change our circumstances. But we do know that God is with us. "Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? In neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. " - Romans 8:35, 38-39


Keeping Memories of Leah Alive -

I have decided to pick out some special things that correspond with my senses, to help make Leah’s life more tangible and leave me with these keepsakes as a way of remembering and celebrating her life. I wanted to share some of them with you:
*********************************************
Leah's:
Color: Lavender
Animal: Lamb
Nickname: God's Little Princess
Flower: Daisy
Song: Jesus Loves Me
Book: The Little Lamb by Judy Dunn
Scent: Sweet Pea (from Bath & Body Works)