37 Week Appointment

Leah seems to be doing well according to Wednesday's appointment. She received great scores on her ultrasound test called a Biophysical Profile. It checked her heartrate, breathing movement, body movement, muscle tone, and amniotic fluid levels. Even with her growth dropping off, she is currently not in "distress". Our doctor feels confident that with such positive ultrasound results, she should still be with us at next week's appointment. They didn't measure her, so we don't have any updates on her size. The next measurements will be taken at 39 weeks (spring break).
We felt so supported and encouraged by a prayer time we held on Monday. Many of our friends came together to intercede on Leah's behalf, and we know many more lifted our family up in prayer from your homes. Our network of support, including YOU....is one of our greatest gifts from the Lord. We began realizing this 5 years ago when our wedding guest list topped 500 people. God has surrounded our family with people who care, and will walk besides us through life's journey.
At my weekly bible study this week, Beth Moore wrote the following lines:
"Those who are faithful in the midst of immense suffering somehow allowed their fiery trials to purify rather than destroy them. If we've never suffered like some of the saints we kno or have read about, we tend to indict ourselves with failure before our trials ever come. We must remember that God grants us grace and mercy according to our need. No, I don't have the strength or character to be faithful under such heartshattering conditions, but the Holy Spirit will impart a power and grace I've never experienced when my time comes. The challenge is whether or not to accept them."
This speaks so clearly to my heart right now, since within 18 days....Leah will arrive! And I am absolutely positive that I am NOT strong enough to face our reality, which is how sick our daughter is, and the fact that the doctors are telling us she will die, they just cannot predict when. My confidence in the Lord allows me to pray, EXPECTING Him to impart the power and grace that I'll need. These past 5 months have definately already felt like a period of testing/trial. According to 1 Peter, it is this testing that shows us the depth of our own faith. God inherently knows where each one of us is spiritually. However, it is through trials, that He reveals His faithfulness and our ability to trust Him, to ourselves.
"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls." 1 Peter 1:6-9
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Prayer Requests (very similar to last weeks)
* For Leah to survive birth, and to be able to breathe on her own, so that Mom and Dad can hold her immediately upon her arrival
* For Leah's healing, and strength to beat the medical statistics for her condition (50% chance of living a week, 10% chance of living a year).
* For Leah to stabalize enough to be able to come home.
* For our family to experience God's comfort, peace and joy in the coming days, upon Leah's arrival, and beyond


 Thursday, March 19, 2009 7:23 PM, CDT
The time has finally come. We checked into St. Vincent's at about 6:00 PM on Thursday. After our appointment, the doctor was concerned about low fluid around the baby and higher blood preassure in Kristine. We decided with the doctor that it would be best to induce right away. Please be praying for us and check back in a few days for more updates. Luke


Friday, March 20, 2009 6:23 PM, CDT
Leah Grace has arrived!!! She weighs 5lbs 11 oz and measures 18 inches long. She's breathing on her own and is housed in the NICU she she can get a little extra oxygen. Kristine and Luke are spending time holding her and loving her. They will post more very soon. Thank you for your continued prayers.

Sunday, March 22, 2009 9:03 PM, CDT
We are praising God for the gift of Leah’s life, and having already been blessed with 2 FULL DAYS together! We have spent this time getting to know her better and better, and love her deeper and deeper. We are getting to live out our "BEST CASE SCENARIO", in terms of God answering so specifically our many, many prayers.
So here is a brief medical update for everyone, as of where she stands as of Sunday evening. She is breathing COMPLETELY on her own! She hasn’t had a seizure since beginning Saturday on a daily dose of a very common anti-seizure medication. This medication does make her extra sleepy, but we’ve been able to attempt nursing due to the fact that her cleft is only on her lip and gumline – NOT her palate. Currently she is being fed both through IV liquids as well as through a feeding tube that goes in her mouth and puts it directly into her tummy. Luke and I have gotten to take part in several of these feedings. She now can maintain her own body temperature without a heat lamp, as she is just using warm clothes and blankets wrapping her up like a little burrito. 
In terms of tests and assessments, the first ultrasound scan of her brain was performed Thursday evening. The images were not good enough for the radiologist to make any interpretation from, so she will have an MRI done in the next 24 hours. This is the clearest way to assess her exact brain malformation and get a prognosis for legnth of her survival. Currently, our neonatologist does not agree with our prenatal diagnosis of Trisomy 13. He says that from the neck down he sees nothing that he feels points to a chromosonal disorder. He will send off for a very comprehensive test to determine exactly what her condition is, however it could take up to 2 weeks to get any results.
Her brain malformation is called Holoprosencephaly. (we knew this from the prenatal ultrasound, and this often occurs in babies with Trisomy 13 - 60% of them in fact, hence our prenatal diagnosis). This condtion of Holoprosencephaly alone…is very rare…only 2 babies in Oregon are born each year with it. This condition can range from mild to very severe. It is only with the MRI along with Leah’s progress that they will be able to determine how severely she may be affected….and how long they’d predict she could survive.
Leah’s progress - the doctors are saying that they are working with her being able to come home in the coming weeks. 3 main things must occur…and thus become our prayer focus.
1. She must be able to breath on her own. (the seizures were causing her vitals to drop)
2. She must be able to be fed and no longer require an IV with fluids. (currently she is half on formula, half on IV fluids, and they are working on weening her off the IV. Her blood sugars were VERY low, so they introduced fluids with the IV to help them stabalize)
3. She must be able to maintain her body temperature.
We’d LOVE to bring her home to spend as much time with her as possible. Our reality is that Leah will be able to do, only what Leah is able to do. We cannot expect any more, any less. She won’t have to follow or fit any textbook defination of any condition. God will allow her to have the life that He has planned for her. We are just blessed to be her parents and to get the opportunity to love and care for her while she is with us!
We would not be sitting here able to hold our daughter, listen to her cries, kiss her cheeks if it were not for all of the millions of prayers that have been offered up on her behalf! We are certain that God has heard our prayers…..the continuous intercessions for the life of our precious Leah! With the expectation that we would not necessarily get to meet her alive, and now we have been changing her diapers, practicing nursing, holding and rocking her for 2 days….we are so greatful to the Lord! There is relief from the months of grief, and joy over the memories our family has been able to create with Leah. God is holding us all through this, as we take Leah’s life one moment at a time…..and as we are creating new memories with each moment together!
We are now home and will plan on spending as much time as possible up at the NICU learning how to care for Leah. We’ll be very busy and hard to get ahold of, and we’re not sure if we’ll be able to have visitors with all the instructional time we’ll be having (PT/OT, Feeding support, Assessments, meetings with various doctors).
We are praising God for giving us time with our precious daughter, Leah!


Monday, March 23, 2009 8:15 PM, CDT
Leah is 3 days old, and such a joy to our family! However, things with her have definitely been up, and then followed by many downs. She’s made progress, only to have new symptoms arise, or to fall back behind on the progress she’s made. She is in need of continuous prayer still, as her life truly hangs in the balance, depending upon what her brain will and won’t be able to do for her tiny body.
Her MRI results came back, and we only have gotten a very preliminary update on her brain. It has been diagnosed as having ALOBAR Holoprosencephaly, which unfortunately is the MOST SEVERE of the different types. Here’s a medical definition for those who are interested:
Alobar (most severe)--where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).
We have not yet gotten any explanation of what our expectations for Leah’s survival should be based upon this diagnosis. From a few internet searches, it seems that we might get a bit more time, and by God’s hand could even surpass that…we’ll just have to wait and see what things her body can handle, and what things just won’t be able to function properly.
Our emotions are truly at both ends of the spectrum right now. We are so saddened to hear the severity of her brain malformation finally diagnosed, yet at the same time truly feeling that this is our "best case scenario still". A scenario that brings us much joy, as we’ve gotten time to love Leah. The reality of getting to care for a baby with very special needs is something we’d found ourselves actually hoping to have the opportunity to do, as we processed everything these past few months. Compared to not having her with us, we’re thrilled to care for her needs, whatever they might be, for as long as God allows.
Our current prayer requests are that we could bring her home soon, and have the chance to love her around the clock. As trying to make it up to the NICU has already proven to be a very hard task for a mom recovering from delivery, and a dad who’s trying to make sure that mom gets some rest in between a vigorous breast pumping schedule. However, compared to our expectations, the joy of being able to feed our daughter is worth the slightest inconvenience. Kyla is the most anxious to have Leah come home so she can get more than a mere glance at her new baby sister.
Leah’s body temps have been hard for her to regulate once again, and her blood sugars are not staying high enough without help from her IV, which was removed this morning. She's also been having more seizures even with the anti-seizure medication. All of these things would prevent her from coming home any time soon.
We are also in need of much rest, both physically and emotionally.
Thank you all for your continued prayers and support. I know I won’t ever be able to write the "Thank You Cards" for all the flowers, gifts, meals and financial assistance at Leah’s WaMu Benevolence account. Which is hard for me, since I’ve always been the Thank You Card queen, with a record turn around time of 1 day upon receiving a gift. It’s always been that way, since I feel so appreciative whenever someone is generous.
We are looking to the Lord to continue to provide abundant blessings to our family. We truly feel that Leah’s life is the biggest blessing yet, along with the bittersweet reality that she is one very sick little girl.
We are overwhelmed with the love from all of you, who have yet to be able to meet her or hold her yet. But your love is so present and obvious from your messages and postings. We’ve read each and every one and are so encouraged by how our little Leah is impacting your life in a positive way!