Leah is HOME! We are definately feeling the joy of being new parents today, as we have had a wonderful day all together as a family of 4. Kyla could not be more excited to finally get to be Leah's big sister and she has been doting on Leah nonstop. It is so beautiful and loving to watch the affection that Kyla has been pouring forth onto Leah just over these past few hours.
God has allowed Leah to come home with us, and for that we lift our hands in praise and worship for His answer to our prayers. How wonderful it is to be able to hold her non stop, love and kiss her. Even with all the realities that we've been facing since November, it's funny that it actually keeps slipping my mind that she is so sick. I just feel the joy of holding my sweet daughter. We gave both our girls bathtime together tonight and it was so sweet. Kyla kept pointing out all of Leah's "tiny little parts", and reminding us that SHE is a big girl, who's 3 years old.
Leah's care will require tube feedings every 3 hours around the clock, which take nearly an hour from start to finish. We'll give her 4 different perscriptions, some once, others twice, and another 3 times a day to help with the seizures, blood sugar and thyroid. We feel very up to the challange of learning how to best care for Leah. Please pray that we'd be able to get enough sleep to take care of our two little girls for as long as they both need.
We might not update too often now that we're home, as we're likely to be very busy. However if things should change or we have new prayer requests we will definately post that for all of you.
We are praying for God's peace to just fill our home as we know that Leah's condition is terminal, and we don't know when or under what circumstances she'll go to Heaven. We are asking the Lord to allow those circumstances to be very peaceful, and for many days like today before it's time. We are asking Him for enough time to create a lifetime of memories together with Leah ~ and all of it to be for His glory!
Monday, March 30, 2009
Sunday, March 29, 2009
We are home this evening (Saturday) preparing to bring Leah home tomorrow. Her seizures have increased rapidly, to the point that they are occuring one after another, after another. They have given her the highest dose that is recommeded safely for her body, and yet the seizures keep coming. Last night it caused her to need breathing assistance and we didn't know if she'd still be with us this morning.
Due to the severity of Leah's condition and the obvious distress that she is under, the staff at the NICU gave our family a private room today and allowed everyone, even Kyla to come be together and visit with Leah this morning. I got to hold her practically all day long, and it was simply wonderful! This is what I've been wanting to do for 8 days now, simply be able to hold and love my little baby girl. She's off all monitors now, and we are leaving her life in God's hands yet another night.
Lord willing, Leah will come home by lunchtime tomorrow, and we will be providing the same level of care at home that she's recieving in the NICU. All meds and feedings will continue as long as she can be with us. Watching her decline over the past 2 days so rapidly has brought us to the place of knowing that the NICU has done everything possible to help our sweet Leah, and there is simply nothing additional that they'd be able to offer her there.
We spent a beautiful day together with all of our family, then Luke and I took turns resting with Leah on our chests....she looked the most peaceful and happy that we'd seen her yet. While she slept she didn't have any seizures, and it was so wonderful to feel her heart beating right next to ours! We read her a bedtime story, took turns giving kisses and wound up her musical lamb.
We don't know what this night will hold, or tomorrow for that matter. But God has already written that part of our story, and we need not be afraid of what we will face. Our God is good, and we are praising Him for a wonderful day with Leah! She is His perfect gift to our family!
Thank you for praying, and continuing to support us. We look forward to having Leah at home with us, and being able to love her for the rest of her life!
Due to the severity of Leah's condition and the obvious distress that she is under, the staff at the NICU gave our family a private room today and allowed everyone, even Kyla to come be together and visit with Leah this morning. I got to hold her practically all day long, and it was simply wonderful! This is what I've been wanting to do for 8 days now, simply be able to hold and love my little baby girl. She's off all monitors now, and we are leaving her life in God's hands yet another night.
Lord willing, Leah will come home by lunchtime tomorrow, and we will be providing the same level of care at home that she's recieving in the NICU. All meds and feedings will continue as long as she can be with us. Watching her decline over the past 2 days so rapidly has brought us to the place of knowing that the NICU has done everything possible to help our sweet Leah, and there is simply nothing additional that they'd be able to offer her there.
We spent a beautiful day together with all of our family, then Luke and I took turns resting with Leah on our chests....she looked the most peaceful and happy that we'd seen her yet. While she slept she didn't have any seizures, and it was so wonderful to feel her heart beating right next to ours! We read her a bedtime story, took turns giving kisses and wound up her musical lamb.
We don't know what this night will hold, or tomorrow for that matter. But God has already written that part of our story, and we need not be afraid of what we will face. Our God is good, and we are praising Him for a wonderful day with Leah! She is His perfect gift to our family!
Thank you for praying, and continuing to support us. We look forward to having Leah at home with us, and being able to love her for the rest of her life!
Friday, March 27, 2009
1 Week Old
Leah is 1 week old today – by God’s hand alone we can celebrate this milestone. She has the cutest litte hiccups, cries when she leaves Mommy's arms, looks adorable when she stretches and yawn and is simply the easiest baby in the world to love! She passed her hearing screening, so we've been reading books to hear, praying with her and just loving on her as much as possible!
Currently Leah’s condition has been evaluated by our Neonatologist, an Endocrinologist, and a Nurologist, who have categoized her challenges as being in the VERY SEVERE range. They are using the MRI, Brain Waves studies, along with many blood tests, and most importantly Leah’s actual symptoms. Her current symptoms include: No Pituitary Function (lack of ability to produce Thyroid, Corisol, Growth Hormones, and all other basic hormones required for survival. She is unable to regulate her body temperature or blood sugar levels (they have been VERY low). The challenge is that low blood sugar can cause even more seizures, which brings us to another of Leah’s huge challenges. Her brain is not properly formed in the front, a nearly fused single hemisphere, rather than two separate hemispheres which should be connected by three ventricles. Her brain does have a lot of matter, meaning that it is trying to sent electrical messages back and forth but there is not the means to do so. This is causing VERY frequent seizure activity in the brain, however she is being given the two types of anti-seizure medications at the same time to help control these seizures from being manifested in her body. She is still having noticeable seizures, but the neurologist said without the medications, she would be having them very often. It is unknown how well or how long these medications will continue to suppress her body’s seizures. As of now, this is the highest level of treatment for her seizures, and the most that is able to be done to help control them. To treat her low blood sugar levels, the Endocronologist is giving her daily doses of Cortisol replacement therapy. This alone hasn’t helped to stabalize her sugars, so they are starting to put sugar into the milk she is receiving through her feeding tube.
The doctors say they have done all the assessments and tests that they are able to do. They are treating each symptom to the best of their ability. The results of each treatment have not been perfectly successful due to the severity of Leah’s condition.
To come home this next week, Leah needs to stabilize blood sugars so she can come off the IV – we’re trying the Cortisol replacements and adding sugars to her milk to help accomplish this goal.
We would be providing the same level of care at home that she is receiving in the NICU, including feeding her with a feeding tube through her nose, dispensing her daily doses of Cortisol replacements, thyroid replacement and anti seizure medications. (we’ve also been trained to give Leah intramuscular injections in the event that she vomits and cannot receive her meds through the feeding tube).
The doctors have been honest with us that due to the severity of Leah’s condition her expected lifespan is very brief…however they cannot predict if that means days, weeks or possibly longer. Thus our desire to have her home with us where we can hold her while caring for her around the clock becomes so strong. As we’ve now spent a week up at the hospital, most of our 8 hour days have only allowed us to be by Leah’s side for a few hours, and we’ve only been able to hold her for minutes a day. She needs our love in addition to all her treatments, and so we’ve set a VERY tenative date of Tuesday to bring her home. She cannot come home with an IV, so her sugars will need to be better than they’ve been. We’ll get to monitor them every three hours with a diabetes monitor (see there was a reason I got gestational diabetes, as this little blood draw is no big deal to me now), monitor her body temperature every 3 hours, feed her every three hours and Love her every minute.
Your prayers are truly sustaining us during this time. God has been so gracious in answering so many of our prayers and in such specific ways. To Him be the Glory for Leah’s life, and our family’s ability to care for Leah. This road ahead will be possible as our Lord leads us along!
Currently Leah’s condition has been evaluated by our Neonatologist, an Endocrinologist, and a Nurologist, who have categoized her challenges as being in the VERY SEVERE range. They are using the MRI, Brain Waves studies, along with many blood tests, and most importantly Leah’s actual symptoms. Her current symptoms include: No Pituitary Function (lack of ability to produce Thyroid, Corisol, Growth Hormones, and all other basic hormones required for survival. She is unable to regulate her body temperature or blood sugar levels (they have been VERY low). The challenge is that low blood sugar can cause even more seizures, which brings us to another of Leah’s huge challenges. Her brain is not properly formed in the front, a nearly fused single hemisphere, rather than two separate hemispheres which should be connected by three ventricles. Her brain does have a lot of matter, meaning that it is trying to sent electrical messages back and forth but there is not the means to do so. This is causing VERY frequent seizure activity in the brain, however she is being given the two types of anti-seizure medications at the same time to help control these seizures from being manifested in her body. She is still having noticeable seizures, but the neurologist said without the medications, she would be having them very often. It is unknown how well or how long these medications will continue to suppress her body’s seizures. As of now, this is the highest level of treatment for her seizures, and the most that is able to be done to help control them. To treat her low blood sugar levels, the Endocronologist is giving her daily doses of Cortisol replacement therapy. This alone hasn’t helped to stabalize her sugars, so they are starting to put sugar into the milk she is receiving through her feeding tube.
The doctors say they have done all the assessments and tests that they are able to do. They are treating each symptom to the best of their ability. The results of each treatment have not been perfectly successful due to the severity of Leah’s condition.
To come home this next week, Leah needs to stabilize blood sugars so she can come off the IV – we’re trying the Cortisol replacements and adding sugars to her milk to help accomplish this goal.
We would be providing the same level of care at home that she is receiving in the NICU, including feeding her with a feeding tube through her nose, dispensing her daily doses of Cortisol replacements, thyroid replacement and anti seizure medications. (we’ve also been trained to give Leah intramuscular injections in the event that she vomits and cannot receive her meds through the feeding tube).
The doctors have been honest with us that due to the severity of Leah’s condition her expected lifespan is very brief…however they cannot predict if that means days, weeks or possibly longer. Thus our desire to have her home with us where we can hold her while caring for her around the clock becomes so strong. As we’ve now spent a week up at the hospital, most of our 8 hour days have only allowed us to be by Leah’s side for a few hours, and we’ve only been able to hold her for minutes a day. She needs our love in addition to all her treatments, and so we’ve set a VERY tenative date of Tuesday to bring her home. She cannot come home with an IV, so her sugars will need to be better than they’ve been. We’ll get to monitor them every three hours with a diabetes monitor (see there was a reason I got gestational diabetes, as this little blood draw is no big deal to me now), monitor her body temperature every 3 hours, feed her every three hours and Love her every minute.
Your prayers are truly sustaining us during this time. God has been so gracious in answering so many of our prayers and in such specific ways. To Him be the Glory for Leah’s life, and our family’s ability to care for Leah. This road ahead will be possible as our Lord leads us along!
Tuesday, March 24, 2009
Leah is 4 days old!!
Our goals for Leah is to see if it will be possible to work towards bringing her home to care for her whatever length of time she can survive. In order to do this, her needs have to drop down to a level of care, that we too can provide at home. So, different from hospice care, our goal is to continue to provide medical interventions from home (hormone therapies, if they help, to replace those missing since it was discovered today that she does not have pituitary function.) This is the "master gland" that controls endrocrine function....however some hormones can be given through her feeding tube that could help her to stabalize enough to come home, but ONLY if her body can respond appropriately to them.) So we meet with the Endocronologist on Thursday to learn how to test her blood sugars, etc. We'll learn to use her NG tube for feedings....it goes through her nose...so we'd have to be able to insert, clean, maintain it. They think that she "should" still be with us for at least the present few days, as nothing seems immediately unstable that they are not able to treat within the NICU through IV, Photo Therapy for Jaunice, etc.
Sorry this update is so brief! It's been an incredibly busy day, and I'm off here at 8pm to go back up to visit Leah. We were unable to hold her today due to her being inside a "box" today receiving the Photo Therapy, as well as an EEG scan of her brain waves that took several hours. But they said I could come back in the evening and possibly get to hold her.
We love her more and more each day! Everything she does is so cute to both Luke and I. Her noises, movements, face, hair, etc. We are definately adoring parents! Kyla got to peek at Leah through the NICU window again, which was very sweet!
Thank you for your continued prayers, that Leah could become stable enough to come home. We understand that her bain malformation is very severe, and that her stabalizing may or may not be possible for Leah. We are waiting to see what God has in store for her life!
Sorry this update is so brief! It's been an incredibly busy day, and I'm off here at 8pm to go back up to visit Leah. We were unable to hold her today due to her being inside a "box" today receiving the Photo Therapy, as well as an EEG scan of her brain waves that took several hours. But they said I could come back in the evening and possibly get to hold her.
We love her more and more each day! Everything she does is so cute to both Luke and I. Her noises, movements, face, hair, etc. We are definately adoring parents! Kyla got to peek at Leah through the NICU window again, which was very sweet!
Thank you for your continued prayers, that Leah could become stable enough to come home. We understand that her bain malformation is very severe, and that her stabalizing may or may not be possible for Leah. We are waiting to see what God has in store for her life!
Monday, March 23, 2009
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!
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!
Sunday, March 22, 2009
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!
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!
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:
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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)
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