Saturday, February 21, 2009
Thursday, February 19, 2009
motherhood - two weeks down
today is Dillan's two week birthday - what a ride its been so far. we've been home from teh hospital for a week now and have started to settle in to our new family life. dillan sleeps about 3-4 hours at a stretch, making it possible for us to sleep 2-3 hours at a time.
he is the sweetest little guy ever. i can spend hours and hours just watching him sleep or stare or play with his hands. we started tummy time yesterday - he seems to enjoy it quite a bit.
my mom, sister, ruth and dana have all been a huge help - especially after a sleepless night. we are truly blessed.
he is the sweetest little guy ever. i can spend hours and hours just watching him sleep or stare or play with his hands. we started tummy time yesterday - he seems to enjoy it quite a bit.
my mom, sister, ruth and dana have all been a huge help - especially after a sleepless night. we are truly blessed.
Thursday, February 12, 2009
Photo Journal
i made a photo journal of Dillan's first week. its on facebook, but you don't need an account. If it asks you to create one and you don't want to, simply look for the No Thanks or Maybe later button.
wrong link was up before. try this one:
http://www.facebook.com/p.php?i=507246500&k=56E42WQ6QV6MX1MGPJ33Y
wrong link was up before. try this one:
http://www.facebook.com/p.php?i=507246500&k=56E42WQ6QV6MX1MGPJ33Y
Wednesday, February 11, 2009
We're home!!!
We're home! its wonderful. All of the test came back negative. We will never know for sure what caused Dillan's episodes (apnea is really rare in term babies) but we know exactly what power healed him. Praise the Lord who was and is so faithful.
Dakota and her new best friend get along great!
This blog will now become a constant update on how cute his moans, groans and burps are and how many poopy diapers we changed. Watch for more pictures then you could ever possibly want to see.
If you automatically receive this blog and want to opt-out, now is a good time to let me know.
Dakota and her new best friend get along great!
This blog will now become a constant update on how cute his moans, groans and burps are and how many poopy diapers we changed. Watch for more pictures then you could ever possibly want to see.
If you automatically receive this blog and want to opt-out, now is a good time to let me know.
Tuesday, February 10, 2009
Tuesday morning update - All Praises!
Yesterday was such an unbelievably blessed day. Dillan continues to be a strong and healthy baby without any signs of having another episode or any other condition. He is truly a gift from God and so amazing to behold.
Yesterday we received a clean bill of health from the neurologist and they removed all of the probes on his head. Now we can pick up, swaddle, cuddle, bathe and otherwise perform basic parenting with our son. It is amazing to just be able to hold him skin to skin agian and see his little head (he had been wearing a skull cap of gauze for the last several days - pictures to comes when we get home).
They also determined that two of the suspected bacteria were not the cause of his episodes, allowing them to discontinue two of the antibiotics.
Luke and I were allowed to stay here in the hospital another night. Also, the couple next door departed and no one has replaced them yet. We now have a barrier of at least one empty room before we get evicted for a higher priority patient or family.
The most exciting news is that Dillan's medical team is working to transfer us back to our home hospital, CHOMP. With all of the progress Dillan has made and the fact that Dillan is now only in the hospital to complete a cycle of anti-viral medication, there are no apparent reasons for us to be at UCSF. The anti-viral can only be administered by IV, but it can be done anywhere. We don't know how long he will be on this round of medication, but are so encouraged and really hope they will be able to send us home to complete it. Most of the nurses speculate that we'll be home by the weekend one way or another.
Luke and I got to go on a lunch date where we enjoyed the absolute best sushi I have ever had (especially after 10 months without any!). We really were able to enjoy each others company and recharge and reconnect. During our date, my mom "babysat" Dillan for the first time. He was awake the whole time and she was able to really bond with him. Lucky grandma!
If you have called and not heard from us, please don't be offended. We only have about 30 minutes in the morning and in the evening to return calls and most of that time is spent on the phone with our parents. We really enjoy your messages, emails and comments on this blog - please keep it up.
We have so much to be thankful for and truly are experiencing an overwhelming response to prayers! God's hand is so obviously providing for and protecting us. We are anxious to get home but appreciate how careful and thorough the doctors are being. Your support and prayers means so much to us and it is truly awesome to experience how quickly, completely and gracoiusly the Lord answers us all.
Yesterday we received a clean bill of health from the neurologist and they removed all of the probes on his head. Now we can pick up, swaddle, cuddle, bathe and otherwise perform basic parenting with our son. It is amazing to just be able to hold him skin to skin agian and see his little head (he had been wearing a skull cap of gauze for the last several days - pictures to comes when we get home).
They also determined that two of the suspected bacteria were not the cause of his episodes, allowing them to discontinue two of the antibiotics.
Luke and I were allowed to stay here in the hospital another night. Also, the couple next door departed and no one has replaced them yet. We now have a barrier of at least one empty room before we get evicted for a higher priority patient or family.
The most exciting news is that Dillan's medical team is working to transfer us back to our home hospital, CHOMP. With all of the progress Dillan has made and the fact that Dillan is now only in the hospital to complete a cycle of anti-viral medication, there are no apparent reasons for us to be at UCSF. The anti-viral can only be administered by IV, but it can be done anywhere. We don't know how long he will be on this round of medication, but are so encouraged and really hope they will be able to send us home to complete it. Most of the nurses speculate that we'll be home by the weekend one way or another.
Luke and I got to go on a lunch date where we enjoyed the absolute best sushi I have ever had (especially after 10 months without any!). We really were able to enjoy each others company and recharge and reconnect. During our date, my mom "babysat" Dillan for the first time. He was awake the whole time and she was able to really bond with him. Lucky grandma!
If you have called and not heard from us, please don't be offended. We only have about 30 minutes in the morning and in the evening to return calls and most of that time is spent on the phone with our parents. We really enjoy your messages, emails and comments on this blog - please keep it up.
We have so much to be thankful for and truly are experiencing an overwhelming response to prayers! God's hand is so obviously providing for and protecting us. We are anxious to get home but appreciate how careful and thorough the doctors are being. Your support and prayers means so much to us and it is truly awesome to experience how quickly, completely and gracoiusly the Lord answers us all.
Monday, February 9, 2009
Monday morning update
its early monday morning. I was discharged from the hospital yesterday morning and mom and i made it up here about 5 PM last night. it is so wonderful to be back together with Luke and Dillan. My son is really so very precious and I never want to be seperated from him again. It is only by the grace of God that I was able to manage it so well the first time.
As I mentioned before, Luke has done an amazing job learning how to care for Dillan, especially under these circumstances. BUt he has also learned how to navigate the ends and outs of this medical center and has been a great teacher to me as I adjust to our temporary home.
Dillan is doing well. He really is so very beautiful and we enjoy losing hours watching him sleep, eat and take in his new world. I am able to breast feed him about every 3 hours. We are blessed that my milk supply came in early and plentiful but also that I produce enough to satisfy him at every feeding.
Luke and I have a room just down the hall from Dillan and are able to be by his side within 1 minute. The nurses call if he wakes up hungry before we get to him on our own.
yesterday a neurologist spent some time with Dillan and also receiving his EEG strips. At this point, it appears that Dillan was not having seizures and that his episodes were not caused by anything neurlogical. That leads us to conclude that his episodes were being caused by an infection or by somethign that will never been explained.
At this point, they cannot confirm an infection. Some of his cultures will come back today and more this week. BUt the msot important one, a test of his spinal fluids, may not happen at all. Three times they've attempted a Lumbar Puncture (LP), but have been unable to draw any fluid. They are debating whether to try a fourth time, but I don't want them to. They are already treating him as if the test had come back positive and really results will just confirm the diagnosis, not change his care.
At this point it looks like Dillan will be here through Thursday so they can finish his cycle of medicine and continue to monitor him. We look forward to going home but ae thankful for the wonderful care he is receiving.
Praise reports:
Room near Dillan
His coninuted ability to thrive and grow and eat
Rest for luke and I by virtue of this room
Free parking for our car
How close my sister lives to the hospital and her willingness to host our mom for round the clock support!
Prayer Request:
Deliverance from all of this and getting to take DIllan home soon
Being able to keep this room in the hospital the whole time
Wisdom on performing a 4th LP
Strength and guidance and wisdom for all of us
As I mentioned before, Luke has done an amazing job learning how to care for Dillan, especially under these circumstances. BUt he has also learned how to navigate the ends and outs of this medical center and has been a great teacher to me as I adjust to our temporary home.
Dillan is doing well. He really is so very beautiful and we enjoy losing hours watching him sleep, eat and take in his new world. I am able to breast feed him about every 3 hours. We are blessed that my milk supply came in early and plentiful but also that I produce enough to satisfy him at every feeding.
Luke and I have a room just down the hall from Dillan and are able to be by his side within 1 minute. The nurses call if he wakes up hungry before we get to him on our own.
yesterday a neurologist spent some time with Dillan and also receiving his EEG strips. At this point, it appears that Dillan was not having seizures and that his episodes were not caused by anything neurlogical. That leads us to conclude that his episodes were being caused by an infection or by somethign that will never been explained.
At this point, they cannot confirm an infection. Some of his cultures will come back today and more this week. BUt the msot important one, a test of his spinal fluids, may not happen at all. Three times they've attempted a Lumbar Puncture (LP), but have been unable to draw any fluid. They are debating whether to try a fourth time, but I don't want them to. They are already treating him as if the test had come back positive and really results will just confirm the diagnosis, not change his care.
At this point it looks like Dillan will be here through Thursday so they can finish his cycle of medicine and continue to monitor him. We look forward to going home but ae thankful for the wonderful care he is receiving.
Praise reports:
Room near Dillan
His coninuted ability to thrive and grow and eat
Rest for luke and I by virtue of this room
Free parking for our car
How close my sister lives to the hospital and her willingness to host our mom for round the clock support!
Prayer Request:
Deliverance from all of this and getting to take DIllan home soon
Being able to keep this room in the hospital the whole time
Wisdom on performing a 4th LP
Strength and guidance and wisdom for all of us
Saturday, February 7, 2009
update - no news is good news
first and foremost - thank you for the outpouring of love and support these past 24 hours. you have all helped tremendously to prop my family up and keep us going through all of this. God's power and mercy are evident and our prayers are being answered every minute of the day. HIs faithfulness is unwavering and so very reassuring.
Dillan's last episode was last night on the plane ride up to UCSF, which means it has been about 18 hours. He has a great appetite, strong reflexes and is interacting with his dad, grandpa, aunt and great-aunt just as any healthy new born would. We are very encouraged.
all of the test results have continued to come back normal and we can only speculate that the medicines they started him on are doing the trick and helping him do so well. no clear signs of an infection or seizures, but nothing has been completely ruled out at this point.
dillan is truly mine and lukes child as evident in his stubborn will and his love for warmth. in the baby warmer, he throws his head back, tucks his hands behind his head and kicks his legs out - just like mommy and daddy when we are working on our tans.
Luke is an amazing father - providing for Dillans every need and being the best advocate a baby could have. i am so proud of him and how well he has managed to take care of all of us through this crisis.
i continue to pump and prepare myself to be with my men again.
specific prayer requests
- wisdom and guidance for all the doctors and nurses and others providing care for dillan.
- strength, rest and grace for luke, me and our family to provide the best environment and care for dillan as possible.
- discernment on when and if i should travel to UCSF to be with my boys.
- delivery from this whole craziness and the complete healing of dillan without any relaspe ever ever ever!
love to all. thank you again for all your support.
Dillan's last episode was last night on the plane ride up to UCSF, which means it has been about 18 hours. He has a great appetite, strong reflexes and is interacting with his dad, grandpa, aunt and great-aunt just as any healthy new born would. We are very encouraged.
all of the test results have continued to come back normal and we can only speculate that the medicines they started him on are doing the trick and helping him do so well. no clear signs of an infection or seizures, but nothing has been completely ruled out at this point.
dillan is truly mine and lukes child as evident in his stubborn will and his love for warmth. in the baby warmer, he throws his head back, tucks his hands behind his head and kicks his legs out - just like mommy and daddy when we are working on our tans.
Luke is an amazing father - providing for Dillans every need and being the best advocate a baby could have. i am so proud of him and how well he has managed to take care of all of us through this crisis.
i continue to pump and prepare myself to be with my men again.
specific prayer requests
- wisdom and guidance for all the doctors and nurses and others providing care for dillan.
- strength, rest and grace for luke, me and our family to provide the best environment and care for dillan as possible.
- discernment on when and if i should travel to UCSF to be with my boys.
- delivery from this whole craziness and the complete healing of dillan without any relaspe ever ever ever!
love to all. thank you again for all your support.
Dillan's trip to UCSF - scariest day ever!
So the past 24 hours have been horrible and wonderful. Dillan is such a beautiful baby and there is nothing better then holding him in our arms and watching him make his old man faces, listen to his little noises. Except for what I explain below, he is absolutely perfect and just so handsome.
since dillan's birth, he has had about 8 "episodes" of stopping breathing. he'll turn pale, then blue and get very stiff and still. after anywhere from 5 to 30 seconds, he'll start to screech and turn very deep red/purple. after a few seconds of that, he returns to a completely beautiful color and falls blissfully asleep. as you can image, this is a scary thing to witness.
our wonderful Pediatrician, Dr. Dianna Diallo, took these episodes very seriously and had us bring Dillan to the nursery for monitoring around 2:30 pm yesterday. He has had at least episodes while in the nursery, the worst of which required oxygen to bring him out of. They started a round of testing (so far all test results have come back normal) to rule out some of the more serious possibilities.
our hospital is only able to provide level 1 NICU treatment and would not be able to maintain his breathing over a long period of time if he really stops breathing. So Dr. Diallo sent him up to UCSF. Dillan and Luke left by helicopter just after midnight. My dad followed them up. Jamie and Luke's aunt and uncle, John and Carol, will meet them at the hospital later this morning. Dillan will be there at least 48 hours.
At UCSF, Dillan will be treated by some of the best specialist in the world and have unlimited access to some of the best testing possible. at best, one of his systems (like this nervous system) is immature and he'll naturally grow out of it. Other possibilities include infection, seizures or God only knows what else.
we are so scared and completely exhausted and overwhelmed and stressed out. But we are so very grateful for how much support we have received and how plentiful God has been in providing for us all. We are truly blessed and for such a horrible situation, things couldn't be better.
Please continue to pray for us and share this prayer request with anyone you like. Until things settle down, we are still going to decline visitors and phone calls, mostly so we can conserve our energies for when Dillan needs us.
since dillan's birth, he has had about 8 "episodes" of stopping breathing. he'll turn pale, then blue and get very stiff and still. after anywhere from 5 to 30 seconds, he'll start to screech and turn very deep red/purple. after a few seconds of that, he returns to a completely beautiful color and falls blissfully asleep. as you can image, this is a scary thing to witness.
our wonderful Pediatrician, Dr. Dianna Diallo, took these episodes very seriously and had us bring Dillan to the nursery for monitoring around 2:30 pm yesterday. He has had at least episodes while in the nursery, the worst of which required oxygen to bring him out of. They started a round of testing (so far all test results have come back normal) to rule out some of the more serious possibilities.
our hospital is only able to provide level 1 NICU treatment and would not be able to maintain his breathing over a long period of time if he really stops breathing. So Dr. Diallo sent him up to UCSF. Dillan and Luke left by helicopter just after midnight. My dad followed them up. Jamie and Luke's aunt and uncle, John and Carol, will meet them at the hospital later this morning. Dillan will be there at least 48 hours.
At UCSF, Dillan will be treated by some of the best specialist in the world and have unlimited access to some of the best testing possible. at best, one of his systems (like this nervous system) is immature and he'll naturally grow out of it. Other possibilities include infection, seizures or God only knows what else.
we are so scared and completely exhausted and overwhelmed and stressed out. But we are so very grateful for how much support we have received and how plentiful God has been in providing for us all. We are truly blessed and for such a horrible situation, things couldn't be better.
Please continue to pray for us and share this prayer request with anyone you like. Until things settle down, we are still going to decline visitors and phone calls, mostly so we can conserve our energies for when Dillan needs us.
Thursday, February 5, 2009
Pictures of Dillan
Dillan Thomas Spence was born today at 0742! He's 8 lbs, 20.5 inches, and gorgeous! Lisa did so well during the labor part, I'm so proud of her. They ended up delivering Dillan by C-Section. Once they brought Lisa into the operating room, it went really fast. We really appreciate all your prayers. Lisa will be in the hospital until at least sunday to recover, but so far she's doing really well. (Community Hospital of the Monterey Peninsula - room 2202). Dillan is healthy and amazing. Pictures to follow, so prepare to be bowled over by his cuteness. Thank you all for your prayers, and 'thanks be to God for His indescribable gift'!
Luke
One more thing, because Lisa is recovering from what amounts to a major surgery, lets wait until we get home to have visitors. We'll be coming home on Sunday sometime. Lisa is really excited to see everyone, but I want her to rest.
Luke
One more thing, because Lisa is recovering from what amounts to a major surgery, lets wait until we get home to have visitors. We'll be coming home on Sunday sometime. Lisa is really excited to see everyone, but I want her to rest.
Wednesday, February 4, 2009
still waiting - patiently?
with just two days to go until our due date, we are feel all of the excitement, anxiety, fatigue and stress of this round the clock waiting game. so to that end and in trying to sort through some of my many and varied emotions, i did a bible study on childbirth and found the following verses to be really encouraging.
"With the LORD's help, I have brought forth (Dillan)!" Gen 4:1
Yes, you have been with me from birth; from my mother's womb you have cared for me. No wonder I am always praising you! Psa 71:6
May she who gave you birth be happy. Pro 23:25
baby being formed in a mother's womb. Ecc 11:5
I honestly do have to say i'm a bit discouraged at how often horrible pain and anguish is related to a woman giving birth (especially for the first time). i'm trying to be encouraged by the idea that they didn't have epidurals back in biblical times.
but i know He will call out Dillan when the time is right and my job is to rest and wait and do all i can to prepare for a healthy delivery and a healthy baby. man oh man, is that hard to remember all day and all night though.
soon enough we'll get to hold this beautiful baby boy in our arms!
"With the LORD's help, I have brought forth (Dillan)!" Gen 4:1
Yes, you have been with me from birth; from my mother's womb you have cared for me. No wonder I am always praising you! Psa 71:6
May she who gave you birth be happy. Pro 23:25
baby being formed in a mother's womb. Ecc 11:5
I honestly do have to say i'm a bit discouraged at how often horrible pain and anguish is related to a woman giving birth (especially for the first time). i'm trying to be encouraged by the idea that they didn't have epidurals back in biblical times.
but i know He will call out Dillan when the time is right and my job is to rest and wait and do all i can to prepare for a healthy delivery and a healthy baby. man oh man, is that hard to remember all day and all night though.
soon enough we'll get to hold this beautiful baby boy in our arms!
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