Photography of Leah
http://leahgracejarmer.shutterfly.com/
Many of you have asked us to share more photos from our journey over these past 13 days. Here is a link to see more photos. Leah's Aunt Charissa took all of these beautiful photos, and they capture the love and memories that we've been able to create with Leah.
Leah had her 2-week check up with her Pediatrician today, and she currently weights 5lbs. 14oz. She is still hanging on, and allowing us more time to love her and care for her. It does feel like she seems to honestly be declining, in terms of her strength and health. Her seizures are becoming much stronger and frequent, and we aren't sure how much longer her body will be able to handle such stress. Her body isn't able to get enough oxygen during these seizures, and that is very hard on her heart.
As you can imagine, watching your own child go through this is beyond hard. We love her so much, and of course do not want to have to say good-bye. Watching each seizure come and wondering if this breath will be her last causes such anxiety and concern. We need so many continued prayers for our family's peace and trust that God is in control, and that He is with us. We're fully accepting that the best place for a sick little girl is Heaven. Yet the reality is still so bittersweet as we want more time to hold her, but can see that her body is so weak.
Also prayers for Kyla, who loves her baby sister so very much. I couldn't have imagined how deeply a 3-year-old could care for a tiny baby, and watching it is simply beautifully touching. Whenever Kyla walks into a room the first thing she asks is, "Where's baby Leah?". She wants to make sure Leah is ok. At lunch today Kyla said that she thinks Leah wants Jesus to come and hug her. She knows that when Leah dies she will be with Jesus in Heaven, but her next comment was if we could drive and visit Leah in Heaven.
Yesterday we put the girls in matching Easter dresses, and it was simply lovely! I painted both their toenails, and yes, even Leah got purple sparkles. And this morning Leah got to go to Kyla's playgroup and meet all the other Mommies and kids.
God is teaching us to trust Him moment by moment. He is accomplishing His will through Leah's life, and we are so thankful to be her parents.
Thursday, April 2, 2009
Monday, March 30, 2009
Leah Comes Home
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!
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!
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!
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