Friday, March 20, 2009
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.
Thursday, March 19, 2009
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
Luke
Thursday, March 12, 2009
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
********************************************
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!
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
********************************************
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!
Friday, March 6, 2009
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)
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)
Thursday, February 19, 2009
34 Week Appointment
(heartrate-152 bpm)
I had another OB appointment this morning, and the doctor seems "cautiously optimistic" that Leah fits the profile of babies that could potentially survive birth and beyond for a bit longer than merely minutes. Of course, babies in her profile don't ALWAYS live, but she could possibly be one of the ones who do. It just depends on so many factors that no doctor could yet know. At least he's being positive and hopeful rather than stricly medically realistic, and pessamistic, I guess. :)
At today's appointment, he revised his guess to being like 50%-75% sure Leah does have Trisomy 13, rather than the less severe diagnosis of purly genetic causes for her issues.
Our doctor also fully supports our plans to use medical intervention to address any/all of Leah's symptoms upon her arrival, until a point where it's clear that it's just not going to keep working. I think that compared to doing nothing (comfort care), there would be a lot less guilt/regret as a parent, knowing you did everything possible to try and help your baby make it....instead of being left to wonder...."If only we'd tried...."
We had a tour of St. Vincent Hospital's maternity ward on Sunday, which made our due date feel all to close, and Leah's condition all too real. I've hardly let myself think about the whole Labor/delivery part. It will be so different from last time, with all the added anxiety and uncertainty attached.
It's definately a plus for a trisomy baby to have a short and fast labor, so their body doesn't have to endure the stress from the contractions too long. We have decided to request a C-section if Leah is in distress during labor. The standard procedure for a baby with a trisomy diagnosis seems to be not to pursue/allow a c-section, since the baby isn't exptected to live very long. They consider it an undue risk to mom to go through labor. Many trisomy babies may not even be monitored at all during their delivery for this same reason.
Part of our decision against having amniocentesis done, is that without a complete diagnosis, we have more options available to us in terms of helping Leah fight for her life. Since the doctors are not positive as to Leah's condition, they will more easiely honor our wishes for medical intervention, rather than encouraging us to pursue "comfort care only" upon her arrival. Once she arrives, a simple blood test, taking 48 hours for results, will be able to tell of if she has Trisomy 13, and which form of it as well.
In response to my question regarding most common cause of death in Trisomy babies, my doctor shared today that it's usually one of two things. First, that these babies are very prone to sleep apnea, and with the wrong blueprints in each cell of their bodies....they simply don't get the message from their brain to breath. And secondly, with cleft lip/palate, there isn't division between the mouth, nasal and ear cavities. In addition to feeding probably, this means fluid can easily get down into the baby's lungs, develop into pnemonia, which their weak body cannot survive.
Having appointments like today, where our doctor says Leah could live even a few days puts such a glimmer of hope back into my painfully responsible plans of "trying to be prepared for the inevitable". Calling funeral homes the same week as filling out my hospital delivery room pre-registration forms is beyond hard! We're preparing to say both Hello and Good-Bye at the same time. The usual plans of decorating a nursery have been replaced by plans full of so much sorrow and grief.
However, simply knowing that God chose me to be Leah's mother brings me so much joy. He chose me to carry this very special child of God.....and carry her I will. Full of love and prayer, able to fully dedicate her life to the Lord. I definately praise the One, who's chosen me to carry Leah! It's such a short while, but also such a long road at the same time. The emotions that go along with such a task are deeper and more intense than I've every before experienced. I just bounce back and forth between trying to prepare for the reality that she might pass away during delivery, to the possibility of her living several weeks/months (which would be a miracle). Of course my desire is for more time! My most hearfelt cry to the Lord is simply for "More Time Lord." It would definately be better, in terms of feeling like I got at least some time to express my immense love face to face with Leah. Also, I pray that Luke and Kyla would get the opportunity to bond and form memories with Leah.
But how long we get with Leah is entirely out of our hands....and fully in the Lord's. It has been giving me such a deeper sense of the reality of how to live moment by moment...as well as how to give our worries and fears over to the Lord. Since I know that I really can't carry them myself, it is easier for me to not even attempt to try. He will be with us each step of the way. He will either bring healing to Leah's tiny earthly body, or she will be eternally healed as her soul, perfectly strong and healthy, enters Heaven. I also have such a deep confidence that He will bring joy, comfort and healing to our family in the event of her loss.
Here are some specific prayer requests:
** Healing for Leah's Body** and also....
1. Leah would continue growing and I would feel the reassurance of her kicks and movements daily
2. Leah would be strong enough to survive delivery (no c-section needed) and even get to come home
3.Wisdom as we meet March 5th with a Neonatologist (the doctor who'll care for Leah after delivery). She'll help us understand and become more familar with the medical terms and practices that may be necessary upon Leah's arrival
4. That Leah could natually arrive a week early, during Spring Break, as my Mom and Sister are both teachers off school and this would allow them the extra time to spend with Leah. Also, Luke's sister Callie and her hubby are planning to come down from Spokane then, and Luke's other sister Charissa has plans to leave for spring term in Hawaii on April 7th. We'd sure love to be able to have all our family be a part of Leah's arrival and celebrations of her life.
******************************************
I feel like I am trying to make plans not having any idea of which exact scenario I am truly even planning for. It's like I'm on an airplane, and I'm told I'll be moving to a foreign county permanetly, but I won't discover the location until we land. I cannot prepare as I would like by learning the language, researching the customs, food or climate. I've brought my suitcase along, but without knowing where I'm going, I was forced to bring it empty. I simply did not know what to pack! I have to trust God to provide everything I'll need!
I know that God will continue to be with us each step of our journey with Leah. Nothing is uncharted territory for my God! He knows and will supply all that I need!
I had another OB appointment this morning, and the doctor seems "cautiously optimistic" that Leah fits the profile of babies that could potentially survive birth and beyond for a bit longer than merely minutes. Of course, babies in her profile don't ALWAYS live, but she could possibly be one of the ones who do. It just depends on so many factors that no doctor could yet know. At least he's being positive and hopeful rather than stricly medically realistic, and pessamistic, I guess. :)
At today's appointment, he revised his guess to being like 50%-75% sure Leah does have Trisomy 13, rather than the less severe diagnosis of purly genetic causes for her issues.
Our doctor also fully supports our plans to use medical intervention to address any/all of Leah's symptoms upon her arrival, until a point where it's clear that it's just not going to keep working. I think that compared to doing nothing (comfort care), there would be a lot less guilt/regret as a parent, knowing you did everything possible to try and help your baby make it....instead of being left to wonder...."If only we'd tried...."
We had a tour of St. Vincent Hospital's maternity ward on Sunday, which made our due date feel all to close, and Leah's condition all too real. I've hardly let myself think about the whole Labor/delivery part. It will be so different from last time, with all the added anxiety and uncertainty attached.
It's definately a plus for a trisomy baby to have a short and fast labor, so their body doesn't have to endure the stress from the contractions too long. We have decided to request a C-section if Leah is in distress during labor. The standard procedure for a baby with a trisomy diagnosis seems to be not to pursue/allow a c-section, since the baby isn't exptected to live very long. They consider it an undue risk to mom to go through labor. Many trisomy babies may not even be monitored at all during their delivery for this same reason.
Part of our decision against having amniocentesis done, is that without a complete diagnosis, we have more options available to us in terms of helping Leah fight for her life. Since the doctors are not positive as to Leah's condition, they will more easiely honor our wishes for medical intervention, rather than encouraging us to pursue "comfort care only" upon her arrival. Once she arrives, a simple blood test, taking 48 hours for results, will be able to tell of if she has Trisomy 13, and which form of it as well.
In response to my question regarding most common cause of death in Trisomy babies, my doctor shared today that it's usually one of two things. First, that these babies are very prone to sleep apnea, and with the wrong blueprints in each cell of their bodies....they simply don't get the message from their brain to breath. And secondly, with cleft lip/palate, there isn't division between the mouth, nasal and ear cavities. In addition to feeding probably, this means fluid can easily get down into the baby's lungs, develop into pnemonia, which their weak body cannot survive.
Having appointments like today, where our doctor says Leah could live even a few days puts such a glimmer of hope back into my painfully responsible plans of "trying to be prepared for the inevitable". Calling funeral homes the same week as filling out my hospital delivery room pre-registration forms is beyond hard! We're preparing to say both Hello and Good-Bye at the same time. The usual plans of decorating a nursery have been replaced by plans full of so much sorrow and grief.
However, simply knowing that God chose me to be Leah's mother brings me so much joy. He chose me to carry this very special child of God.....and carry her I will. Full of love and prayer, able to fully dedicate her life to the Lord. I definately praise the One, who's chosen me to carry Leah! It's such a short while, but also such a long road at the same time. The emotions that go along with such a task are deeper and more intense than I've every before experienced. I just bounce back and forth between trying to prepare for the reality that she might pass away during delivery, to the possibility of her living several weeks/months (which would be a miracle). Of course my desire is for more time! My most hearfelt cry to the Lord is simply for "More Time Lord." It would definately be better, in terms of feeling like I got at least some time to express my immense love face to face with Leah. Also, I pray that Luke and Kyla would get the opportunity to bond and form memories with Leah.
But how long we get with Leah is entirely out of our hands....and fully in the Lord's. It has been giving me such a deeper sense of the reality of how to live moment by moment...as well as how to give our worries and fears over to the Lord. Since I know that I really can't carry them myself, it is easier for me to not even attempt to try. He will be with us each step of the way. He will either bring healing to Leah's tiny earthly body, or she will be eternally healed as her soul, perfectly strong and healthy, enters Heaven. I also have such a deep confidence that He will bring joy, comfort and healing to our family in the event of her loss.
Here are some specific prayer requests:
** Healing for Leah's Body** and also....
1. Leah would continue growing and I would feel the reassurance of her kicks and movements daily
2. Leah would be strong enough to survive delivery (no c-section needed) and even get to come home
3.Wisdom as we meet March 5th with a Neonatologist (the doctor who'll care for Leah after delivery). She'll help us understand and become more familar with the medical terms and practices that may be necessary upon Leah's arrival
4. That Leah could natually arrive a week early, during Spring Break, as my Mom and Sister are both teachers off school and this would allow them the extra time to spend with Leah. Also, Luke's sister Callie and her hubby are planning to come down from Spokane then, and Luke's other sister Charissa has plans to leave for spring term in Hawaii on April 7th. We'd sure love to be able to have all our family be a part of Leah's arrival and celebrations of her life.
******************************************
I feel like I am trying to make plans not having any idea of which exact scenario I am truly even planning for. It's like I'm on an airplane, and I'm told I'll be moving to a foreign county permanetly, but I won't discover the location until we land. I cannot prepare as I would like by learning the language, researching the customs, food or climate. I've brought my suitcase along, but without knowing where I'm going, I was forced to bring it empty. I simply did not know what to pack! I have to trust God to provide everything I'll need!
I know that God will continue to be with us each step of our journey with Leah. Nothing is uncharted territory for my God! He knows and will supply all that I need!
Introducing Leah Grace Jarmer
We finally had another appointment back at the Perinatal Clinic on Thursday. Even with everything being the "same" as before, we felt like it was a very positive appointment. Leah is still growing - she's at the 25% in terms of size. She is now 32 weeks along (8 months) and is estimated to weigh around 3lbs. 8 oz. Her heart is still beating strong - 138 bpm, and it is so amazing to be able to see her actual heart on the ultrasound and watch it beating!
When we asked the Perinatologist to go back over with us a list of Leah's ultrasound markers that indicated Trisomy 13 - he mentioned the following things:
1. Cleft Lip/Palate
2. Brain Malformation (possibly Holoprocencephaly - he sees that the Corpus Collosum is not fully formed, and there is a gap present that is filled with fluid)
3. Leah's eyes are slightly closer together
4. Leah's feet are misshapen (often called Rocker Bottom Feet)
When these things appear together it points strongly to a chromosonal disorder - Trisomy 13 in particular. However, without having an absolute test result from amniocentesis, our doctor says it's still possible these markers are not due to Trisomy 13, but rather other causes. He shared that in his opinion it wasn't necessary to have amnio done, since we can test Leah's blood once she arrives to determine her exact condition.
Our doctor also said, that since Leah is still growing, and VERY active at 8 months - she's already beaten a good number of the odds for babies with Trisomy 13. In light of that, he is slighly less sure that it is Trisomy 13, he said maybe a 50% chance at this point. Irregardless of the diagnosis, her brain malformation is severe, and it is hard for him to predict the length of time she may be able to survive in light of it.
It is a good sign that Leah's already turned and is positioned head down for our upcoming delivery. It is still very possible that Leah will go to Heaven prior to her birth, but we are praying that God would give her the strength to survive birth so we can meet her and love her (even for just a short time).
When we asked the Perinatologist to go back over with us a list of Leah's ultrasound markers that indicated Trisomy 13 - he mentioned the following things:
1. Cleft Lip/Palate
2. Brain Malformation (possibly Holoprocencephaly - he sees that the Corpus Collosum is not fully formed, and there is a gap present that is filled with fluid)
3. Leah's eyes are slightly closer together
4. Leah's feet are misshapen (often called Rocker Bottom Feet)
When these things appear together it points strongly to a chromosonal disorder - Trisomy 13 in particular. However, without having an absolute test result from amniocentesis, our doctor says it's still possible these markers are not due to Trisomy 13, but rather other causes. He shared that in his opinion it wasn't necessary to have amnio done, since we can test Leah's blood once she arrives to determine her exact condition.
Our doctor also said, that since Leah is still growing, and VERY active at 8 months - she's already beaten a good number of the odds for babies with Trisomy 13. In light of that, he is slighly less sure that it is Trisomy 13, he said maybe a 50% chance at this point. Irregardless of the diagnosis, her brain malformation is severe, and it is hard for him to predict the length of time she may be able to survive in light of it.
It is a good sign that Leah's already turned and is positioned head down for our upcoming delivery. It is still very possible that Leah will go to Heaven prior to her birth, but we are praying that God would give her the strength to survive birth so we can meet her and love her (even for just a short time).
Subscribe to:
Posts (Atom)
