Wow! We finally got a formula change for Janna and the result has been surprising, even better than expected. Not only has Janna not had any major reflux problems on this Formula; Nestle Compleat, she had the best night sleep that anyone can remember her having - ever! Previously we were lucky to get a straight 6 hours, this would be considered a "good night's sleep". Last night she slept for 9 and a half hours! I'm so happy about that I could track down the creator of that particular formula recipe and give him/her a big Thank You hug. Of course I still do not like the idea of only giving Janna the same formula for every meal day in and day out so we're going to try a home made blenderized diet in the mornings and see how it goes. One thing is for sure, we've moved on from Pediasure and will not be looking back.
Of course sleep is still a bit of a premium luxury with Baby Alexa thrown in the mix. She's still nursing frequently every 2-3 hours and growing like a little weed. At around 9 weeks old she's now out of the 3 month old clothing and into 3-6 or 6 month sizes. She's moved up a diaper size too, I'm a bit concerned that she'll be out of the small size G-diapers before we can use up the refills. (Which I had ordered back in December from a third party online vendor who will remain nameless, but still have not yet arrived.) We've been using disposables in the meantime and Alex is now in size two. When I opened the new package And put the first #2 diaper on her I noticed the Elmo on the waist band and felt a wave of disappointment..maybe even a little bit of depression and it took me a few seconds to realize why. These diapers were the very same that had been used on Janna when we were inpatient at BCCH in December of 2008. She was 5 months old and we were in the midst of our battle with the seizure monster that was slowly stealing her from us. It was surprising to me that the presence of one little illustrated Sesame St character could evoke such an emotional response. I guess I am a little PTSD after all.
A final thought, I've heard many instances where having a special needs child stresses a marriage to the breaking point. When I'd hear these stories I'd thank my lucky stars for the man I'd married thinking that could never happen to us. More recent events have brought me to realize that even the strongest relationships can be tested and that, no my marriage was not immune. Not that I'm under the illusion that we weren't susceptible to other challenges, but Janna was a huge game changer for us.
My husband and I used to thrive on adventure, getting out into the mountains and exploring new territory. Janna came as a surprise to both of us, we hadn't planned on a child together. After her birth and what followed, I saw the road ahead as one of the biggest mountains I'd ever climb, not sure if I'd be rewarded with a view or pummelled by storms. I've trod up this trail the past two a half years with my head down, determined to reach the top. I knew my husband was falling behind but thought he'd catch up eventually. It wasn't until I looked up one day and saw him climbing back down that I'd realized he was lost, and retreating to more hospitable terrain. Do I follow him back down? Memories of the warm sun, carefee days in the flower dappled meadows, traveling the majestic forests and drinking from cool clean streams fill my head with a sad yearning for what once was. Then I look at my daughter; my beautiful Janna, and know I'm right where she needs me to be. So with a heavy heart I take one last look downward. I say my goodbye and up I climb shouldering the harsh weather through that moonscape with her because she deserves above all else to get to the top of that mountain.
Goodbye Tim, I'm sorry for not being the wife you wanted me to be, sorry you couldn't be the husband I needed but I'll never be sorry for our daughter.
Monday, February 21, 2011
Monday, January 24, 2011
Janna's new toys and Alexa is getting bigger.
The new year has come and we've been busy with the new babe and Janna. Janna has some new light toys that she really likes:
And Alexa is discovering all of Janna's old baby toys:
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
Janna now has had her Peg Perego stroller adapted with a specialized headrest, foam lat support and proper harnesses to help make it more appropriate for her. We were so delighted to have this done as it makes that seating not only more appropriate but also SAFE to seat her in. She can't arch out when properly clipped in and she doesn't arch as much because the headrest supports her head yet still allows her some movement to each side. Janna has also had her Pony walker/stander adapted to help keep her in it without arching backwards. It does do the trick but the jury is still out on whether Janna will adapt to the adaptation. The only downfall in the way the back and head support in the Pony has been built is that it still will not allow her to bring her body up straight - it keeps her a bit leaning forward (prone) while standing so it's still not an optimal position. She's didn't mind it at first but now she's starting to show us she's not totally thrilled - perhaps we'll figure that one out yet - it may need some additional adjustment.
The best news ever is that Janna's long awaited "Cuddle Bug" adaptive stroller will be shipped to us on the 28th of this month. We really missed it after we had to return the loaner. My Insurer has said they will cover it under Janna's "lifetime maximum" for mobility equipment which leaves me with mixed feelings as this obviously isn't the last time we'll need to purchase mobility equipment for her. Truth be told I'd rather they have only covered the $2K for a regular wheelchair (not motorized) and let us go to my husband's health spending account to claim the remainder - that would have left us with more flexibility in leftover funding should we need to access insurance funds for more equipment in future. I guess maximizing our funding options isn't in the insurer's interest. :) (duh!)
Oh well - my motto lately is lets worry about today and let tomorrow's challenges be dealt with when the time comes.
Saturday, December 18, 2010
Janna's Sister is here.
She was born on December 8th at 7:17am. She weighed 7lbs 3oz and has been a vigorous healthy little monkey from the get-go.
Her manner of coming into the world was quite a different experience than what we'd had with Janna. While our biggest concern was of safety of delivery for baby and me - it was a bonus that we were able to have such a wonderful (I will not say easy because that wouldn't be correct.) natural labour and delivery.
What follows is Alexa's birth story because I felt I needed to write it out and share it but if you're squeamish about such things you may want to stop reading now. Okay you've been warned. :)
Contractions woke me at around 2:30 am. I stayed in bed trying to figure out if they were the real thing or just strong Braxons. By the Tim's 3am work alarm went off I was pretty sure they were the real thing and decided to get up and check for any other labour signs. Sure enough - I had some light pink streaking. Contractions were stronger once I'd gotten out of bed. I had Tim help me put on the TENs machine. I switched it on intending to lay back down and try and get some rest and thinking we were a long way off yet. I set Tim to work saying "nothing will likely happen until this evening".
I found myself restless and decided time would be better spent packing any last items into my hospital bag, emailing my Doula, posting for friends on Facebook "sitting on an exercise ball with the TENs machine on - and contracting. Hows that for a status update!" and leaving posts for friends on several other message boards of which I'm a part.
After that I went upstairs - still intending to rest - but still found myself restless, contractions were stronger now and I really needed to concentrate on breathing to get through them. Some were so strong they left my legs shaking uncontrollably. Started to feel some pressure and kept needing to move from the bed to the bathroom and on the second of one of these trips I felt a pop and gush. I remember saying "oh, I guess this is really happening." I sent a text message to Tim to let him know the situation and several strong contractions later I was able to gather myself up to call my Doula. After listening to me a little while she said "holy cow Jenn it sounds like things are really happening, I'm packing up my stuff and coming - if things get really crazy call me again."
My mother had woken by this time, Janna had been awake and complaining quietly. I let Mom know I was in Labour but it wasn't "too bad yet" and "don't worry until you start to hear me screaming." :S.
Things were indeed happening. 30 minutes later contractions were now so strong that I was vocalizing loudly between them - couldn't be helped it was all I could do to cope. The TENS machine was very helpful and when I'd forgotten to hit the toggle switch during a contraction I really knew it! By the time Cindy (Doula) arrived she found me still in the bathroom holding the counter and leaning into it. She took some time to coach me through a few "surges" - reminding me about breathing and helping me along. I remember her saying. "Um I think we need to get ready to go to the hospital and I don't think we're going to make it to Abbotsford." I of course was in complete denial but in my own defense contractions never became regular, I would have one then a longish break, then another coupled with another, then a break then another three together then a break... I still didn't think I was that close and based on my experience with Janna I couldn't be that close - not that quickly! I didn't feel that close. Of course to help back my position, at that point I had a break in contractions longer than one minute and I looked at Cindy and said, "whew I think I'm going to get a nice break here." She looked at me hesitantly and asked "did you want to try a warm shower?" "Um..sure" I said but "I've got the TENs on - I'll have to take it off - electro-shock hazard." At that she laughed and no sooner had she begun to relax than another contraction - a good intense one happened but it was short. "Okay I'm thinking we need to go to the hospital now" she said. I wasn't in the mood to argue any longer.
She went downstairs and started recruiting my mom to help her pack her jeep. While she was gone I started having another contraction, then another and another back to back and I felt the slightest push urge but it was gone quickly. After what seemed like awhile but was likely only minutes - Cindy returned and offered to help me dress but I really didn't care to get that complicated; it's funny how Labour is really good at making you lose all modesty and any sense of decorum. Instead I simply asked for my big fuzzy house robe and my slippers and we were off down the stairs - slowly. Before we made it out the front door I had another strong contraction and there it was again, a slight, fleeting pushing urge. Cindy helped me through it and then looked me in the eye. "Jenn" she said. "Tell me the truth, are you feeling pushy?" I looked at her and said "yes just a little" "Okay" she said, "I think we're going to need to go to Chilliwack"
This was really not part of what we'd wanted - we had chosen the Abbotsford Hospital and because of past experience and result with Janna; I really didn't want to go to Chilliwack again. "I think we might be okay - I don't think I'm that close." I maintained. "Okay" Cindy breathed "we'll see how things go but by the time we get close to the Hwy we need to make a decision either way."
She helped me get in the jeep, I found I couldn't lift my leg to step in and it was necessary for Cindy to help lift it for me. During which another strong contraction but I was in and we were on our way. I had another contraction with a small push urge just as we were a minute into the drive. "Jenn honey I think I heard a push?" I nodded, "yeah just a little one - it was quick and now it's gone." She was quiet a moment. "Jenn, we're going to Chilliwack" "um no..." I started and then there was another strong contraction and a push urge. "Okay!" I yelled through it, "Chilliwack... Chilliwack!"
The ride was quite uncomfortable and I know I'd had at least 4 more contractions on the way with another stronger, less controllable urge to push. We arrived at Emerg, Cindy parked in an Ambulance stall and tried as gently as possible to rush me across the Emerg driveway. "Come on hon, we have to get off the road." Another contraction for me as we made our way slowly across to the Emergency room doors. I remember a women leaving the hospital trying to make eye contact with me as asking if she could "help" me. I really couldn't respond to her at all, I was having contractions more and more quickly now. An emergency nurse appeared and asked "chair?" "Yes please" exclaimed Cindy, she returned quickly with the chair and they both helped me to lower my body onto the chair as contractions had made it almost impossible for me to manage sitting in the chair on my own.
"I guess I don't have to ask where you two want to go?" the nurse quipped with a smile. I had a quick smile myself in reply but it was fleeting as my body was really commanding all of my attention.
I was wheeled quickly though the hallways to the elevator. I found myself arching and lifting my body with my arms to keep the weight off my bottom in the chair and there it was another strong push urge - It was impossible not to give in a little. I felt a gush as I was wheeled right past a dumbfounded and then panicked Maternity ward desk. Cindy was barking out orders and snapped the nurses into action all while wheeling me into the first available delivery room.
A nurse and a resident met us there and the nurse said - "We'll need you up here" motioning to the gurney in the delivery room. Because of my general condition and the fact that the foot rests were still in place getting out of the chair was awkward if not impossible. I said "I'll need help" Cindy noticed my situation immediately said authoritatively; "can you move the footrest for her while I help her up." Once they had me up the next challenge was actually getting on the bed. Both the resident and the nurse were telling me I needed to "hop up into bed" again I had to say. "can't lift my leg, you'll have to lift it for me."
Once I was up in position I had another contraction and one of the hospital staff asked if I wanted to try the nitrous oxide "gas" I nodded yes and it was provided for me and I was instructed how to use it. After I'd had 2 puffs the nurse proceeded with an exam to chart the position of the baby.
Her exam prompted another strong contraction along with an extremely strong push urge - The nurse obviously noticed this and she looked at me "Dont push,..." I couldn't help a small push "DONT PUSH" barked both a paniced nurse and resident in unison. At this point Cindy leaned over and whispered into my ear. "It's okay Jenn, you're ready - do what your body is telling you to do." I felt a wave of relief as the urge to push was now overwhelming and I proceeded despite the loud protests of the hospital staff.
In less than 2 good pushes I felt Alexa's head emerge then another push and her shoulders came free and all 7lbs 3oz of our screaming baby daughter was in the hands of the nurse who had been conducting the exam. Looking back I have to laugh - I guess the baby's position on the chart should have read "nurse Barbra's hands".
Alexa was put on my tummy and a warm towel was draped over her and I looked at her in disbelief. I was shocked with the realization that I was very close to having had her in Cindy's jeep. In about 15 minutes more I was being assisted to breastfeed and Alexa was quite interested and latched like a little pro.
I felt a number of things, shock, relief, happiness and euphoria that everything had gone so well and this little person I'd managed to deliver into the world looked so health and vigorous. The experience was not only positive - after my experience with Janna in Labour and Delivery; Alexa's birth granted me peace, healing of old wounds that I hadn't been aware still lingered.
I'm more grateful for what Alexa's birth gave back to me than I can put to words.
Her manner of coming into the world was quite a different experience than what we'd had with Janna. While our biggest concern was of safety of delivery for baby and me - it was a bonus that we were able to have such a wonderful (I will not say easy because that wouldn't be correct.) natural labour and delivery.
What follows is Alexa's birth story because I felt I needed to write it out and share it but if you're squeamish about such things you may want to stop reading now. Okay you've been warned. :)
Contractions woke me at around 2:30 am. I stayed in bed trying to figure out if they were the real thing or just strong Braxons. By the Tim's 3am work alarm went off I was pretty sure they were the real thing and decided to get up and check for any other labour signs. Sure enough - I had some light pink streaking. Contractions were stronger once I'd gotten out of bed. I had Tim help me put on the TENs machine. I switched it on intending to lay back down and try and get some rest and thinking we were a long way off yet. I set Tim to work saying "nothing will likely happen until this evening".
I found myself restless and decided time would be better spent packing any last items into my hospital bag, emailing my Doula, posting for friends on Facebook "sitting on an exercise ball with the TENs machine on - and contracting. Hows that for a status update!" and leaving posts for friends on several other message boards of which I'm a part.
After that I went upstairs - still intending to rest - but still found myself restless, contractions were stronger now and I really needed to concentrate on breathing to get through them. Some were so strong they left my legs shaking uncontrollably. Started to feel some pressure and kept needing to move from the bed to the bathroom and on the second of one of these trips I felt a pop and gush. I remember saying "oh, I guess this is really happening." I sent a text message to Tim to let him know the situation and several strong contractions later I was able to gather myself up to call my Doula. After listening to me a little while she said "holy cow Jenn it sounds like things are really happening, I'm packing up my stuff and coming - if things get really crazy call me again."
My mother had woken by this time, Janna had been awake and complaining quietly. I let Mom know I was in Labour but it wasn't "too bad yet" and "don't worry until you start to hear me screaming." :S.
Things were indeed happening. 30 minutes later contractions were now so strong that I was vocalizing loudly between them - couldn't be helped it was all I could do to cope. The TENS machine was very helpful and when I'd forgotten to hit the toggle switch during a contraction I really knew it! By the time Cindy (Doula) arrived she found me still in the bathroom holding the counter and leaning into it. She took some time to coach me through a few "surges" - reminding me about breathing and helping me along. I remember her saying. "Um I think we need to get ready to go to the hospital and I don't think we're going to make it to Abbotsford." I of course was in complete denial but in my own defense contractions never became regular, I would have one then a longish break, then another coupled with another, then a break then another three together then a break... I still didn't think I was that close and based on my experience with Janna I couldn't be that close - not that quickly! I didn't feel that close. Of course to help back my position, at that point I had a break in contractions longer than one minute and I looked at Cindy and said, "whew I think I'm going to get a nice break here." She looked at me hesitantly and asked "did you want to try a warm shower?" "Um..sure" I said but "I've got the TENs on - I'll have to take it off - electro-shock hazard." At that she laughed and no sooner had she begun to relax than another contraction - a good intense one happened but it was short. "Okay I'm thinking we need to go to the hospital now" she said. I wasn't in the mood to argue any longer.
She went downstairs and started recruiting my mom to help her pack her jeep. While she was gone I started having another contraction, then another and another back to back and I felt the slightest push urge but it was gone quickly. After what seemed like awhile but was likely only minutes - Cindy returned and offered to help me dress but I really didn't care to get that complicated; it's funny how Labour is really good at making you lose all modesty and any sense of decorum. Instead I simply asked for my big fuzzy house robe and my slippers and we were off down the stairs - slowly. Before we made it out the front door I had another strong contraction and there it was again, a slight, fleeting pushing urge. Cindy helped me through it and then looked me in the eye. "Jenn" she said. "Tell me the truth, are you feeling pushy?" I looked at her and said "yes just a little" "Okay" she said, "I think we're going to need to go to Chilliwack"
This was really not part of what we'd wanted - we had chosen the Abbotsford Hospital and because of past experience and result with Janna; I really didn't want to go to Chilliwack again. "I think we might be okay - I don't think I'm that close." I maintained. "Okay" Cindy breathed "we'll see how things go but by the time we get close to the Hwy we need to make a decision either way."
She helped me get in the jeep, I found I couldn't lift my leg to step in and it was necessary for Cindy to help lift it for me. During which another strong contraction but I was in and we were on our way. I had another contraction with a small push urge just as we were a minute into the drive. "Jenn honey I think I heard a push?" I nodded, "yeah just a little one - it was quick and now it's gone." She was quiet a moment. "Jenn, we're going to Chilliwack" "um no..." I started and then there was another strong contraction and a push urge. "Okay!" I yelled through it, "Chilliwack... Chilliwack!"
The ride was quite uncomfortable and I know I'd had at least 4 more contractions on the way with another stronger, less controllable urge to push. We arrived at Emerg, Cindy parked in an Ambulance stall and tried as gently as possible to rush me across the Emerg driveway. "Come on hon, we have to get off the road." Another contraction for me as we made our way slowly across to the Emergency room doors. I remember a women leaving the hospital trying to make eye contact with me as asking if she could "help" me. I really couldn't respond to her at all, I was having contractions more and more quickly now. An emergency nurse appeared and asked "chair?" "Yes please" exclaimed Cindy, she returned quickly with the chair and they both helped me to lower my body onto the chair as contractions had made it almost impossible for me to manage sitting in the chair on my own.
"I guess I don't have to ask where you two want to go?" the nurse quipped with a smile. I had a quick smile myself in reply but it was fleeting as my body was really commanding all of my attention.
I was wheeled quickly though the hallways to the elevator. I found myself arching and lifting my body with my arms to keep the weight off my bottom in the chair and there it was another strong push urge - It was impossible not to give in a little. I felt a gush as I was wheeled right past a dumbfounded and then panicked Maternity ward desk. Cindy was barking out orders and snapped the nurses into action all while wheeling me into the first available delivery room.
A nurse and a resident met us there and the nurse said - "We'll need you up here" motioning to the gurney in the delivery room. Because of my general condition and the fact that the foot rests were still in place getting out of the chair was awkward if not impossible. I said "I'll need help" Cindy noticed my situation immediately said authoritatively; "can you move the footrest for her while I help her up." Once they had me up the next challenge was actually getting on the bed. Both the resident and the nurse were telling me I needed to "hop up into bed" again I had to say. "can't lift my leg, you'll have to lift it for me."
Once I was up in position I had another contraction and one of the hospital staff asked if I wanted to try the nitrous oxide "gas" I nodded yes and it was provided for me and I was instructed how to use it. After I'd had 2 puffs the nurse proceeded with an exam to chart the position of the baby.
Her exam prompted another strong contraction along with an extremely strong push urge - The nurse obviously noticed this and she looked at me "Dont push,..." I couldn't help a small push "DONT PUSH" barked both a paniced nurse and resident in unison. At this point Cindy leaned over and whispered into my ear. "It's okay Jenn, you're ready - do what your body is telling you to do." I felt a wave of relief as the urge to push was now overwhelming and I proceeded despite the loud protests of the hospital staff.
In less than 2 good pushes I felt Alexa's head emerge then another push and her shoulders came free and all 7lbs 3oz of our screaming baby daughter was in the hands of the nurse who had been conducting the exam. Looking back I have to laugh - I guess the baby's position on the chart should have read "nurse Barbra's hands".
Alexa was put on my tummy and a warm towel was draped over her and I looked at her in disbelief. I was shocked with the realization that I was very close to having had her in Cindy's jeep. In about 15 minutes more I was being assisted to breastfeed and Alexa was quite interested and latched like a little pro.
I felt a number of things, shock, relief, happiness and euphoria that everything had gone so well and this little person I'd managed to deliver into the world looked so health and vigorous. The experience was not only positive - after my experience with Janna in Labour and Delivery; Alexa's birth granted me peace, healing of old wounds that I hadn't been aware still lingered.
I'm more grateful for what Alexa's birth gave back to me than I can put to words.
Sunday, October 31, 2010
October 31st, 2010. Just a note regarding an awesome Janna toy.
Why wait for Christmas! Janna's taught me that it's just better not to wait for things.
We found this toy at Costco and I loved it the moment I saw it. Perfect for her and she really seems to like it. It made my day to see her actually PLAY with something!
We found this toy at Costco and I loved it the moment I saw it. Perfect for her and she really seems to like it. It made my day to see her actually PLAY with something!
Thursday, August 5, 2010
August 15th, 2010. AKA: Janna's Two and will be getting a baby sister for Christmas!
That's right, it's been ages again since I've posted but life and time has had a way of slipping by quickly.
Janna is stable and doing well from a health standpoint, no seizures that we can identify, she's gaining weight well, her eyesight has improved, she's moving a little more than she used to but she's still very delayed. No sitting up, rolling over, she's still floppy in her neck and trunk.
She is also learning to cry - yep no smiles but a discern-able cry is taking shape, with tears even! I feel a bit bad about being happy about that, what normal parent in the world is happy about hearing their child cry? Well we're not "normal" parents and we take joy in the strangest things around here. We're still learning to make our peace with that and move on.
Still no laughing yet - but Janna HATES it when she hears laughter, something about the sound seems to be quite grating to her, she tenses up, arches and sometimes makes her crying sound to accompany the laughing she hears. I hope someday she'll be able to get past that, as she's gotten past jumping at every sharp or loud sound that happens around or near her.
So we're about to embark upon a second adventure, with a baby sister due in December. I'm excited and frightened at the same time, under the circumstances I know that's to be expected but it doesn't make it any easier to deal with.
Time for some Janna pictures, they always make me feel better.
Janna is stable and doing well from a health standpoint, no seizures that we can identify, she's gaining weight well, her eyesight has improved, she's moving a little more than she used to but she's still very delayed. No sitting up, rolling over, she's still floppy in her neck and trunk.
She is also learning to cry - yep no smiles but a discern-able cry is taking shape, with tears even! I feel a bit bad about being happy about that, what normal parent in the world is happy about hearing their child cry? Well we're not "normal" parents and we take joy in the strangest things around here. We're still learning to make our peace with that and move on.
Still no laughing yet - but Janna HATES it when she hears laughter, something about the sound seems to be quite grating to her, she tenses up, arches and sometimes makes her crying sound to accompany the laughing she hears. I hope someday she'll be able to get past that, as she's gotten past jumping at every sharp or loud sound that happens around or near her.
So we're about to embark upon a second adventure, with a baby sister due in December. I'm excited and frightened at the same time, under the circumstances I know that's to be expected but it doesn't make it any easier to deal with.
Time for some Janna pictures, they always make me feel better.
Sunday, January 17, 2010
January 17th, 2010. AKA: Making Faces
Happily Janna's resolution for the New Year appears to be she's decided to sleep through the night on a more regular basis! Of course after our Neurology appointment in January we upped her Nitrazepam by .2 mls so perhaps she was having some seizure activity waking her up?
Another new thing for the New Year is she's learning to make faces. I'm not talking about her "poopy faces" or the "yuck I've got something in my mouth and I'm going to use my tongue to push it out" - face. I'm talking about profoundly sad/upset faces for almost no apparent reason or expressed when the smallest thing happens. (Like when mama blows hair out of her eyes, she seems not to like that at all.)
Another new thing for the New Year is she's learning to make faces. I'm not talking about her "poopy faces" or the "yuck I've got something in my mouth and I'm going to use my tongue to push it out" - face. I'm talking about profoundly sad/upset faces for almost no apparent reason or expressed when the smallest thing happens. (Like when mama blows hair out of her eyes, she seems not to like that at all.)
Saturday, May 30, 2009
May 30th, 2009 AKA: Happy 10 month old day Janna!
Janna is 10 months old today! And Mom was relentless with the PT therapy today. (poor Janna!). She finally seems healed enough from G-tube surgery to make more of a go at learning new ways to move so that's what we did today.
Our PT loaned us a very institutional looking chair. When I first saw it I was a bit unsure but after seeing Janna in it, I love it! We worked in the chair today and did some side to back rolling and some tummy time (which she hated)
Here is the video of our chair work. Janna is really working hard to keep her head up!
Our PT loaned us a very institutional looking chair. When I first saw it I was a bit unsure but after seeing Janna in it, I love it! We worked in the chair today and did some side to back rolling and some tummy time (which she hated)
Here is the video of our chair work. Janna is really working hard to keep her head up!
Friday, May 29, 2009
May 29th, 2009. Janna Inchstone: rolling from Side laying to Back.
Janna has made another inchstone this week. She's now able to roll from her side to her back. This is wonderful to see, we hope it progresses so she's able to do a full roll from her tummy to back.
(insert rolling video if I can find it.)
She also really enjoys the outside, just like her parents, but isn't tolerating bumps and jostling too well right now so although we'd like to be doing more walks and exploring we're pretty much just hanging out in the backyard and deck with her right now. Ah well, it gave me a good excuse to improve our backyard space :).
(insert rolling video if I can find it.)
She also really enjoys the outside, just like her parents, but isn't tolerating bumps and jostling too well right now so although we'd like to be doing more walks and exploring we're pretty much just hanging out in the backyard and deck with her right now. Ah well, it gave me a good excuse to improve our backyard space :).
Sunday, May 24, 2009
May 24th 2009. G-Tube Learning and Med Weaning
So now we're almost into June and I haven't updated at all. Yeah I can be a procrastinator.
Janna had G-tube surgery in mid April and did as well as could be expected. She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)
Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery. We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:
"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.
Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and Mepilex, so far my favourite absorbative/wicking dressing.
I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.
One thing that is troubling is her gagging episodes. She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them. She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.
I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all? We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.
Med weaning is going well. It's nice to be finished with the Prednisolone. The Amlodipine and Vigabatrin is slowly being weaned as well. Soon, if all goes well; we'll only have 2 meds to deal with. What a dream!
She's also shown some gains in her vision. The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).
Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old. We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.
So we trod on. Some days are better than others. We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot. Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit. I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.
Janna had G-tube surgery in mid April and did as well as could be expected. She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)
Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery. We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:
"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.
Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and Mepilex, so far my favourite absorbative/wicking dressing.
I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.
One thing that is troubling is her gagging episodes. She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them. She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.
I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all? We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.
Med weaning is going well. It's nice to be finished with the Prednisolone. The Amlodipine and Vigabatrin is slowly being weaned as well. Soon, if all goes well; we'll only have 2 meds to deal with. What a dream!
She's also shown some gains in her vision. The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).
Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old. We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.
So we trod on. Some days are better than others. We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot. Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit. I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.
Monday, May 11, 2009
November 5th, 2009. AKA 15 months old now.
Yes I'm a bad bad mom. I didn't do a Happy Birthday post for Janna (tsk tsk) I've been back at work the past 3 months and we are blessed to have Grandma taking care of Janna full time.
Some of the good news lately has been:
Overall she is doing well though. Still not sitting, still not smiling a whole lot or laughing, still doesn't have the ability to grasp and pick up toys, still doesn't have head control and is hypotonic through her neck and trunk but we do see small improvements in her during tummy time and in her ability to lift and maintain a head up position for short periods of time when being cuddled. We'll happily take that and keep encouraging, watching and hoping for more improvements as time wears on.
Some of the good news lately has been:
- her hips were given a pass by ortho
- she still seems seizure free
- she is developing slowly at her own pace, it's great to see the tiny improvements she's making.
- we should have her specialized seating and stroller in the next month along with a specialized therapy wedge designed by our PT
- we should be getting a stander for her within the next 4 months
- all and all her quality of life is good, we even see a rare glimmer of a smile from time to time.
- We've found a wonderful respite worker who Janna seems to respond well to.
Overall she is doing well though. Still not sitting, still not smiling a whole lot or laughing, still doesn't have the ability to grasp and pick up toys, still doesn't have head control and is hypotonic through her neck and trunk but we do see small improvements in her during tummy time and in her ability to lift and maintain a head up position for short periods of time when being cuddled. We'll happily take that and keep encouraging, watching and hoping for more improvements as time wears on.
Wednesday, March 4, 2009
March 4th, 2009 AKA SPASM Free!
You couldn't wipe the smile off my face after our last Neuro appt. Janna appears to be spasm free after we endured a 3 week hospitalization for ACTH treatment of her Spasms.
I knew that we were seeing good things result from the ACTH, she was making more noises, she was fixing her gaze on things again, she was trying to get her hands up to her mouth all good things but I wouldn't have dared to dream we'd be spasm free. Even our Neurologist was surprised, he didn't think we'd necessarily see that kind of benefit from the ACTH due to the extent of Janna's birth injury. I'm not sure we're completely seizure free but I can live with a few seizures as long as the spasms do not come back.
So now we're working on a very slow wean of the Steriod/Hormone and she's on a vast cocktail of meds still; Nitrazepam, Vigabatrin, Pregnisone, Amlodipine, Lansoprazole but we'll be slowly weaning the Pregnisone and then the Amlodipine and then the Vigabatrin. Hopefully she continues to do well and we can get away with only the Nitrazepam and Lansoprazole going forward.
Our next hospital visit will be for her G-tube in mid April and then at the same time we have clinic appointments with Neuro and Ortho. She's now in a Pavlik harness for Developmental Hip Dysplasia and we'll be stuck with it for 23 hrs per day until May (Although I'm sure it will be necessary to give her a break from it during her surgery and recovery. I'll be discussing this with our orthopedic surgeon when we have our clinic appointment.)
So we get to chill out at home for awhile with only pediatric appointments each week until mid April (Yeah!)
I knew that we were seeing good things result from the ACTH, she was making more noises, she was fixing her gaze on things again, she was trying to get her hands up to her mouth all good things but I wouldn't have dared to dream we'd be spasm free. Even our Neurologist was surprised, he didn't think we'd necessarily see that kind of benefit from the ACTH due to the extent of Janna's birth injury. I'm not sure we're completely seizure free but I can live with a few seizures as long as the spasms do not come back.
So now we're working on a very slow wean of the Steriod/Hormone and she's on a vast cocktail of meds still; Nitrazepam, Vigabatrin, Pregnisone, Amlodipine, Lansoprazole but we'll be slowly weaning the Pregnisone and then the Amlodipine and then the Vigabatrin. Hopefully she continues to do well and we can get away with only the Nitrazepam and Lansoprazole going forward.
Our next hospital visit will be for her G-tube in mid April and then at the same time we have clinic appointments with Neuro and Ortho. She's now in a Pavlik harness for Developmental Hip Dysplasia and we'll be stuck with it for 23 hrs per day until May (Although I'm sure it will be necessary to give her a break from it during her surgery and recovery. I'll be discussing this with our orthopedic surgeon when we have our clinic appointment.)
So we get to chill out at home for awhile with only pediatric appointments each week until mid April (Yeah!)
Thursday, January 15, 2009
January 15th, 2009 AKA ACTH Therapy
We didn't see an end to her seizures on the Nitrazepam, we saw a what seems like a reduction with the combination Nitraz/Vigabatrin but I can't say she's been seizure free.
It looks like ACTH is the next thing on the agenda. Janna will be admitted to BCCH next week. We're waiting on a phone call from Neurology to find out when we're to head in.
Because of the risk of some serious side effects I told them I'd rather be admitted with her so she can be monitored closely. This will be a "low dose" ACTH course and if she tolerates it after the first few doses we'll be released and continue with it to see if we see a break in seizure activity. If that doesn't work we'll go to regular dose ACTH and if that doesn't work, on to the next thing although I'm not sure what that will be.
On a positive note, she has gone back to lifting her head and she's much less floppy now than she was with the pheno/nitraz/vig combo so we're seeing more movement out of her.
I have this love/hate relationship with her NG tube. She coughs and gags on it quite a bit and I know it makes her uncomfortable but it's the only way to get nutrition into her at the moment. She has gained weight, she's now at 12lbs 8oz and on track for weight gain. Our G-tube surgery consult is on Feb 3rd and I still wince when I think of her with a G-tube and worry about how well she'll be able to tolerate it, after surgery pain etc. I know she needs it right now so I'll get over my own issues with it and move on.
I do find I'm giving her more belly tickles and kisses now that I know there is a countdown to the surgery. I know I'm going to miss that beautiful little tubeless belly.
And onward we trod. Waiting for that call back from Neuro.
It looks like ACTH is the next thing on the agenda. Janna will be admitted to BCCH next week. We're waiting on a phone call from Neurology to find out when we're to head in.
Because of the risk of some serious side effects I told them I'd rather be admitted with her so she can be monitored closely. This will be a "low dose" ACTH course and if she tolerates it after the first few doses we'll be released and continue with it to see if we see a break in seizure activity. If that doesn't work we'll go to regular dose ACTH and if that doesn't work, on to the next thing although I'm not sure what that will be.
On a positive note, she has gone back to lifting her head and she's much less floppy now than she was with the pheno/nitraz/vig combo so we're seeing more movement out of her.
I have this love/hate relationship with her NG tube. She coughs and gags on it quite a bit and I know it makes her uncomfortable but it's the only way to get nutrition into her at the moment. She has gained weight, she's now at 12lbs 8oz and on track for weight gain. Our G-tube surgery consult is on Feb 3rd and I still wince when I think of her with a G-tube and worry about how well she'll be able to tolerate it, after surgery pain etc. I know she needs it right now so I'll get over my own issues with it and move on.
I do find I'm giving her more belly tickles and kisses now that I know there is a countdown to the surgery. I know I'm going to miss that beautiful little tubeless belly.
And onward we trod. Waiting for that call back from Neuro.
Monday, January 12, 2009
January 12th, 2009. AKA Vigabatrin
There's alot to tell.
At our 3 month EEG Janna was diagnosed with Infantile Spasms and we started on Vigabatrin. I was not in the mood to update the blog, I wasn't in the mood to do much else but bury my head in a pillow but hey - no time for that really when you're caring for an infant with a serious chronic condition.
The medication seemed to be doing it's job, we were getting Janna back. Still no real smiles and she was very floppy but we were seeing her more focused which was a bit of a relief. But a few weeks later I noticed some strange, very subtle rhythmic movements she was making with her arms and legs. I called Neuro, we had an emergency EEG and It turned out Vigabatrin wasn't our wonder drug. Janna was still having a large number of seizures.
We were admitted to BCCH and a new drug was added to the regimine; Nitrazepam. The idea was to completely wean Phenobarb (which she's been on in low dose since NICU) and begin a wean of Vigabatrin and introduce nitrazepam.
At first she had a cocktail of all three. This basically turned her into a drooling rag doll. Another side effect of the Nitraz is incoordination of suck and swallow so it became impossible to bottle feed her. She was incredibly floppy and sleepy but we were seeing more focus from her when she was awake and we were not seeing as many seizure clusters from her. Once the levels for Pheno and Vig came down, she was fitted with an NG feeding tube I was shown how to manage it and we procured the necessary equipment for interal feedings; we were released with a plan for weaning two of her anti-convulsants and continuing on with the Nitrazepam.
The wean started well enough. We even began some vision therapy. (We'd discovered during our Ophamology referral in-hospital that she has a Cortical Vision Impairment) but when we stepped down to only 125mg of Vigabatrin per day, on the third day - we began seeing an increase in seizure clusters and the duration of each was longer than we'd seen since we'd started the Vigabatrin. I placed an emergency call to the resident Neuro on call at BCCH, chatted with him and it was decided that we'd step back in our Vig wean to 250mg per day and keep the Nitraz steady until our follow up EEG scheduled that week.
So fast forward to that EEG - we found she was still having seizures and many of them were very subtle with almost no outward signs. In total neuro counted 30 in a 30 minute EEG time span. That was last week.
Our next plan of attack is to up the nitrazepam and keep the Vig at the same dose. We were to try this for a week and follow-up report to neuro. If we are still seeing outward signs of seizure, we'll arrange to be admitted to BCCH again and start low-dose ACTH.
One positive thing that came out of last week is that we were introduced to Canuck Place. Janna is now officially a "Canuck kid" and we'll have access to that resource when we need it.
As of today, I'm starting to feel a bit cautiously optimistic that the Nitraz and Vigabatrin might just be helping. She's regaining some head control and I counted less seizures today.
Hopefully this trend continues.
At our 3 month EEG Janna was diagnosed with Infantile Spasms and we started on Vigabatrin. I was not in the mood to update the blog, I wasn't in the mood to do much else but bury my head in a pillow but hey - no time for that really when you're caring for an infant with a serious chronic condition.
The medication seemed to be doing it's job, we were getting Janna back. Still no real smiles and she was very floppy but we were seeing her more focused which was a bit of a relief. But a few weeks later I noticed some strange, very subtle rhythmic movements she was making with her arms and legs. I called Neuro, we had an emergency EEG and It turned out Vigabatrin wasn't our wonder drug. Janna was still having a large number of seizures.
We were admitted to BCCH and a new drug was added to the regimine; Nitrazepam. The idea was to completely wean Phenobarb (which she's been on in low dose since NICU) and begin a wean of Vigabatrin and introduce nitrazepam.
At first she had a cocktail of all three. This basically turned her into a drooling rag doll. Another side effect of the Nitraz is incoordination of suck and swallow so it became impossible to bottle feed her. She was incredibly floppy and sleepy but we were seeing more focus from her when she was awake and we were not seeing as many seizure clusters from her. Once the levels for Pheno and Vig came down, she was fitted with an NG feeding tube I was shown how to manage it and we procured the necessary equipment for interal feedings; we were released with a plan for weaning two of her anti-convulsants and continuing on with the Nitrazepam.
The wean started well enough. We even began some vision therapy. (We'd discovered during our Ophamology referral in-hospital that she has a Cortical Vision Impairment) but when we stepped down to only 125mg of Vigabatrin per day, on the third day - we began seeing an increase in seizure clusters and the duration of each was longer than we'd seen since we'd started the Vigabatrin. I placed an emergency call to the resident Neuro on call at BCCH, chatted with him and it was decided that we'd step back in our Vig wean to 250mg per day and keep the Nitraz steady until our follow up EEG scheduled that week.
So fast forward to that EEG - we found she was still having seizures and many of them were very subtle with almost no outward signs. In total neuro counted 30 in a 30 minute EEG time span. That was last week.
Our next plan of attack is to up the nitrazepam and keep the Vig at the same dose. We were to try this for a week and follow-up report to neuro. If we are still seeing outward signs of seizure, we'll arrange to be admitted to BCCH again and start low-dose ACTH.
One positive thing that came out of last week is that we were introduced to Canuck Place. Janna is now officially a "Canuck kid" and we'll have access to that resource when we need it.
As of today, I'm starting to feel a bit cautiously optimistic that the Nitraz and Vigabatrin might just be helping. She's regaining some head control and I counted less seizures today.
Hopefully this trend continues.
Wednesday, October 22, 2008
October 22, 2008 @ 7:18 pm AKA GERD Mania
My last post seems like ages ago. I can barely remember the last time I was able to lay Janna down flat for tummy time without her suffering from reflux and an aspiration attack. I’ve got a full out GERDling (gastroesophageal reflux disease).
The last month has seen many sleepless nights and many restless days with me trying to manage Jannas symptoms and researching strategies for managing GERD effectively.
I keep joking that Janna is the most expensive baby on our block. Here’s why:
Essential GERDling Gear:
- Dr. Browns Bottles
- Hypoallergenic formula (if not Breastfeeding)
- Breastpump with storage bottles (still attemping to feed some breastmilk even if she can’t take it directly from the source.
- Simply Thick™ to thicken feeds to help avoid asperation of vomit or excessive “spit-up” (commercial thickener for formula as intollerance of rice thickening only worsens symptoms for Janna)
- 30 deg angle for sleeping (RESQ wedge) *very good investment!
- 30 deg angle foam for chaning table *can get this cut at a foam shop
- 30 deg pillow for feeding (pollywog brastfeeding pillow works when Janna’s symptoms aren’t too horrible)
- babycarrier – one that doesn’t make me carry weight on my back for long (I own 4 different carriers now)
- Hug me Joey – Infant car seat adapter (most infant car seats are seated too deep to be tolerated by GERDlings.)
- Infacol (Simethicone to help with gas)
- A multitude of burp cloths/ receiving blankets
- 4 strain Probiotic (they need rebalance as the meds will put them off) we picked up a hypoallergenic formulation from Kirkland Labs in Oregon.
Meds
- Novo-Ranitidine (Zantac) an H2 blocker that works intially for immediate relief but often will eventually stop working because the stomach develops more receptors to compensate for the blocked receptors that signal when to produce acid. (Tachyphilaxis) *www.reflux.org/reflux/webdoc01.nsf
- Omeprazole/Lansoprazole. PPI or Proton Pump Inhibitors are the best for relief and chronically perscribed last because they are “off label” in Canada or not necessarily approved for use in infants. Studies at the university of Missouri have demonstrated the effectiveness and safety of PPIs for longer term therapy.
http://www.marci-kids.com/summaries.html As a result of what I assume is it’s off label status, dosing of these PPIs often appears too conservative to be effective. Take note that Prilosec suspensions are very unstable and will often begin to degrade after 5-7 days rendering the active ingredient Omeprazole useless. (Dr Jeffery Phillips) We tried Omeprazole and it had almost no effect for Janna after one week. I didn’t want to wait another to see if it would “kick in” as advised by our pediatrician. I switched her to Prevacid Capsules with “Bufferbabies” used as a suspension as per Jeffery Phillips recommendations. (Yes they do respond to email and take international “patients”. 
- Motility Drugs: Domperidone (Canada) designed to increase motility of the bowels through working on the nerves that control peristalsis, the wavelike contractions that push food and fluids through the gastrointestinal tract, much like squeezing a tube of toothpaste from the bottom up. *http://www.marci-kids.com/medications.html we were perscribed Domperidone but I took her off of it because I found it really wasn’t doing anything to help and I don’t like the possible side effects: as per http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/EPS-TD.htm?OpenDocument
It’s been a tough haul but we are getting there. With thickened feeds she no longer spits-up/vomits 30mls of her feeding. With the proper meds I hope to stave off feeding aversion (which we were beginning to see signs of before we started the Ranitidine and it actually worked well for a few days!) We start Janna on the Prevacid w/Bufferbabies as soon as the Bufferbabies carrier for the Prevacid arrives from MARCI.
Even with her change table at 30deg I still have to perform the “quick change” to avoid reflux episodes and we can only lay her down on a 30deg sleeping surface 1hr after a bottle. She arches almost constantly now unless she’s drinking from her bottle. We did see a cessation of this while the Ranitidine was working. We’re now back to the arching and her dose of Omeprazole (which we’ll keep her on until we have the Prevacid ready to go) still does not seem to help even after a week of being on it.
Again she was sleeping better in the first few days of Ranitidine dosing but she’s gone back to sleeping maybe 4-5 hours at night and usually being up most of the day with the exception of a 1 hour nap and a small handful of cat naps during and right after feeding for the past few days. Today has seen her have more sleep during the day than usual but it’s hard to tell if it’s due to omeprazole finally beginning to take effect or plain exhaustion. She fell asleep this afternoon twice during her bottle, once after the first 20mls and dozed for 15 minutes and then again after the next 20mls and stayed asleep for an hour and 20min. Falling asleep during her bottle is something we see quite often, and often after only the 20mls. I think this is because the liquid goes down her throat and gives her temporary relief and then the exhaustion kicks in and she falls asleep.
We’re still working on solutions, every week sees us trying something different or new.
These sites were very helpful:
www.pollywogbaby.com (for essential gear)
www.marci-kids.com the online home of the Midwest Acid Reflux Children’s Institute
www.reflux.org the PAGER site a non profit group dedicated to the provision of information and support to parents, patients and doctors about Gastroesophageal Reflux (GER).
www.infantreflux.org a forum for parents managing GERD symptoms in their children.
So to close, we’re not out of the woods yet. Not even close but at least I feel like we’ve found a marked trail.
Thursday, October 2, 2008
October 2, 2008 @ 12:45 am
After being negligent in updating the blog for over a month and receiving several inquires after little J I figured I’d better get to it. She’s napping so I’ll take the opportunity.
Little Janna is keeping me on my toes. She doesn’t cry and everyone says I should be grateful for that but I have mixed feelings about it. We’ve had some friends share stories of their children as babes and I’ve discovered that not crying isn’t completely abnormal but it still bothers me a bit. She’s very quiet for the most part and will let out the occasional sigh or vocalization and she does make a quiet “ahh ahh” sound when she wakes. I hope to hear more of her little voice as the next month passes.
She’s pushing herself up at a 45deg angle during tummy time and almost able to roll herself over onto her back. That makes me smile. She does rarely give me a little glimmer of a smile herself from time to time but not often.
We’ve been working through some wicked acid reflux. I can’t lay her on her back for long without having her spit-up which makes changing poopy diapers an interesting challenge. Along with the reflux she has episodes where her eyes open wide, her face red and she pushes her chest upward and arches her back with her mouth agape. She looks like she’s trying her best to breathe and not choke. The first time I saw this it scared me quite a bit. When this happens I hold her upright and still and just talk her through it making sure she’s able to breathe. We do this until the episode subsides. I’d purchased several crib wedges to help keep her slightly upright while on her back they seemed to help a bit in the beginning but her symptoms only got worse and now they do not help. As a result and to what I’m sure would be the horror of public health nurses and doctors everywhere; we’ve abandoned the normal “back to sleep” policy and she sleeps on her tummy or side with me always close by and my ears tuned into any sounds she makes. I’ve gotten quite good at knowing what sounds could mean trouble. After doing some research I discovered GER and found that she’s not alone in her symptoms. We have a doctor’s appointment later this week and I look forward to discussing this and exploring strategies with her GP.
The breastfeeding never caught on. Soon after we came home from the hospital she developed a bad case of thrush and was having difficulty feeding on a bottle so trying to BF was really not appropriate for her at the time. It took several weeks for her to get over it and once she did we tried a bit again but in the end I decided it wasn’t worth pushing her to change from the bottle when I’d be going back to work in two months so I’ve kept the sessions relaxed and typically give up trying after 20 min. She has nursed 3 times - but she is very difficult to get latched. I’m still pumping. Surprised? I am. Although I’m not as concerned about supply as we’ve got her on formula as well as expressed breast milk. With her spit-ups and gas we’re still trying to find one that works well for her. Her gassiness is worst overnight with her sleeping in 30-90 minute snatches between bouts of writhing, burping and spitting up before and after her bottle. Our most recent choice has been Enfamil Gentlease. I’m not sure it’s an improvement over anything else we’ve tried (we’re on our third formula switch) but it does have less lactose and the milk proteins are partially broken down so from a composition perspective it should be better for her. I want to avoid giving her soy because from what I’ve read it can increase the risk of peanut allergy later on.
What else can I say - for the most part she seems like a “normal” if quite work intensive baby. Here’s some photos to keep everyone an opportunity to say “aaaawe”.
Little Janna is keeping me on my toes. She doesn’t cry and everyone says I should be grateful for that but I have mixed feelings about it. We’ve had some friends share stories of their children as babes and I’ve discovered that not crying isn’t completely abnormal but it still bothers me a bit. She’s very quiet for the most part and will let out the occasional sigh or vocalization and she does make a quiet “ahh ahh” sound when she wakes. I hope to hear more of her little voice as the next month passes.
She’s pushing herself up at a 45deg angle during tummy time and almost able to roll herself over onto her back. That makes me smile. She does rarely give me a little glimmer of a smile herself from time to time but not often.
We’ve been working through some wicked acid reflux. I can’t lay her on her back for long without having her spit-up which makes changing poopy diapers an interesting challenge. Along with the reflux she has episodes where her eyes open wide, her face red and she pushes her chest upward and arches her back with her mouth agape. She looks like she’s trying her best to breathe and not choke. The first time I saw this it scared me quite a bit. When this happens I hold her upright and still and just talk her through it making sure she’s able to breathe. We do this until the episode subsides. I’d purchased several crib wedges to help keep her slightly upright while on her back they seemed to help a bit in the beginning but her symptoms only got worse and now they do not help. As a result and to what I’m sure would be the horror of public health nurses and doctors everywhere; we’ve abandoned the normal “back to sleep” policy and she sleeps on her tummy or side with me always close by and my ears tuned into any sounds she makes. I’ve gotten quite good at knowing what sounds could mean trouble. After doing some research I discovered GER and found that she’s not alone in her symptoms. We have a doctor’s appointment later this week and I look forward to discussing this and exploring strategies with her GP.
The breastfeeding never caught on. Soon after we came home from the hospital she developed a bad case of thrush and was having difficulty feeding on a bottle so trying to BF was really not appropriate for her at the time. It took several weeks for her to get over it and once she did we tried a bit again but in the end I decided it wasn’t worth pushing her to change from the bottle when I’d be going back to work in two months so I’ve kept the sessions relaxed and typically give up trying after 20 min. She has nursed 3 times - but she is very difficult to get latched. I’m still pumping. Surprised? I am. Although I’m not as concerned about supply as we’ve got her on formula as well as expressed breast milk. With her spit-ups and gas we’re still trying to find one that works well for her. Her gassiness is worst overnight with her sleeping in 30-90 minute snatches between bouts of writhing, burping and spitting up before and after her bottle. Our most recent choice has been Enfamil Gentlease. I’m not sure it’s an improvement over anything else we’ve tried (we’re on our third formula switch) but it does have less lactose and the milk proteins are partially broken down so from a composition perspective it should be better for her. I want to avoid giving her soy because from what I’ve read it can increase the risk of peanut allergy later on.
What else can I say - for the most part she seems like a “normal” if quite work intensive baby. Here’s some photos to keep everyone an opportunity to say “aaaawe”.
Wednesday, August 13, 2008
August 13, 2008 @ 7:54 pm
On the morning of day 13 during rounds I heard the news we’d been waiting for, for awhile. The lead resident talked about transition to home and “rooming-in” for the evening.
You couldn’t have wiped the smile off my face. That afternoon we went back to my Aunts to make sure I had a nap to prepare for my first night as mom with Janna by my beside.
The night went extremely well. I found Janna to be easy, just requiring patience and persistence during feeds, our nurse for the night hadn’t ever had Janna in her care before and she seemed more nervous than I felt while preparing both of us for our night together but by the end of the night and her last check-up with us in the early morning she was giving me the “thumbs up” sign and she seemed quite satisfied with my ability to care for little J outside of the hospital.
That morning during rounds the resident signed the last bit of paperwork for release and we were given our referral numbers for a pediatrician and occupational therapist in Chilliwack, her RX for meds and one last bedside visit by the Neurologist that will be following up with Janna in 3-6 months time and we were on our way.
Janna’s first day at home was very nice. I couldn’t get used to how quiet it was after all the hospital noises were both subjected to over the last week or so. I imagine “little J” felt much the same. So far so good. I’m slowly trying to work in some B-feeding attempts during her more awake feeds and while she has latched and given a few sucks I think we’re a little ways from success yet. I’m hoping we’ll both be able to figure it out by the end of the month with the help of the public health nurse.
It’s so great to treat Janna like a regular baby for a change. We’ll be monitoring her development carefully with the help of her Occupational Therapist to insure that she receives any help she may need quickly.
I’ll post pictures once I have the chance to upload. Taking care of a newborn while still expressing doesn’t leave a lot of time do manage things like blogs but we’ll do our best. Thanks to everyone for their prayers and well wishes. I’m sure they helped tremendously.
You couldn’t have wiped the smile off my face. That afternoon we went back to my Aunts to make sure I had a nap to prepare for my first night as mom with Janna by my beside.
The night went extremely well. I found Janna to be easy, just requiring patience and persistence during feeds, our nurse for the night hadn’t ever had Janna in her care before and she seemed more nervous than I felt while preparing both of us for our night together but by the end of the night and her last check-up with us in the early morning she was giving me the “thumbs up” sign and she seemed quite satisfied with my ability to care for little J outside of the hospital.
That morning during rounds the resident signed the last bit of paperwork for release and we were given our referral numbers for a pediatrician and occupational therapist in Chilliwack, her RX for meds and one last bedside visit by the Neurologist that will be following up with Janna in 3-6 months time and we were on our way.
Janna’s first day at home was very nice. I couldn’t get used to how quiet it was after all the hospital noises were both subjected to over the last week or so. I imagine “little J” felt much the same. So far so good. I’m slowly trying to work in some B-feeding attempts during her more awake feeds and while she has latched and given a few sucks I think we’re a little ways from success yet. I’m hoping we’ll both be able to figure it out by the end of the month with the help of the public health nurse.
It’s so great to treat Janna like a regular baby for a change. We’ll be monitoring her development carefully with the help of her Occupational Therapist to insure that she receives any help she may need quickly.
I’ll post pictures once I have the chance to upload. Taking care of a newborn while still expressing doesn’t leave a lot of time do manage things like blogs but we’ll do our best. Thanks to everyone for their prayers and well wishes. I’m sure they helped tremendously.
10 Comments »
August 13, 2008 @ 8:14 pm
Great news.
So happy Janna finally got to come home.
Sounds like she is doing wonderfully, you too.
Looking forward to seeing the 3 of you again soon.
Si
So happy Janna finally got to come home.
Sounds like she is doing wonderfully, you too.
Looking forward to seeing the 3 of you again soon.
Si
August 13, 2008 @ 10:21 pm
Oh Jenn, what a fabulous update! I’m so happy for you.
((HUG)) (so hard without smileys!)
Pam
August 13, 2008 @ 10:38 pm
FANTASTIC NEWS Jenn!!!! Hope “little J” has an excellent first couple days home!
August 13, 2008 @ 11:08 pm
I’m SO glad to hear she’s home, Jenn!
August 14, 2008 @ 8:55 am
Welcome home little one!!! This is fantastic news! Sounds like Little MIss J is heading in the right direction. That is awesome. Wishing you all the best,
Kathy
August 14, 2008 @ 12:40 pm
wonderful news! continued prayers and good thoughts SO happy to hear little Janna is at home
SO happy to hear little Janna is at homeAugust 14, 2008 @ 5:31 pm
How wonderful to hear Janna’s home with Mom and Dad where she belongs. The body was made to heal and love accomplishes much! I’m looking forward to meeting you Janna. Good work Jenn, you’re already a great MOM!
August 15, 2008 @ 1:09 am
Great news to hear that your night together went well… and good that you are still trying the B-feeding… We did that when everyone else was doing bottles… B-feeding was so handy, always the right temp… and we never ran out…. and it’s such a special thing that you can do for Janna and for yourself. Have fun!!!
August 15, 2008 @ 6:14 pm
WHOOHOO! Getting back from a successful bomber trip to such fantastic news makes everything even better! Up for a visit in a day or two? I will be heading out of town either tomorrow or the next day.
September 17, 2008 @ 5:29 pm
So glad to hear she finally went home and things improved through those first two weeks. Any updates? I’ve been meaning the whole time to post a comment here to tell you that my thoughts and hopes are with you and baby Janna, and haven’t remembered to, so I hope this late comment will make up for it.
Hoping for the best,
Jeremy
Hoping for the best,
Jeremy
Monday, August 11, 2008
August 11, 2008 @ 9:40 am
Little Janna continues to show us signs that she’s improving. The nurses have changed her feeding from a scheduled every three hours to more “on demand feeding” leaving up to 4 hours between feedings to give her a chance to tell us she’s hungry.
She seems to be able to do this well enough on her own in the late morning to early afternoon before and after that time she still seems to need help to wake-up.
Her pheno dose is gradually being moved back to her last evening feeding (11pm-12pm) so that we can let her sleep a little longer overnight and not have to struggle with feeding a sleepy baby. We’ll need to wake her at 4-5am for the first morning feeding.
She has a definite ”wake and play” time between late morning and early afternoon. She’s making noises and actually crying in her little way. She’s looking around and will look straight at mom or dad or the nurse during a cuddle and feed and seems to also like staring at the overhead lights. The nurses think she’s ready to try breastfeeding today during her more awake feeding times. It will be great if she and I manage to move to that method of feeding as expression of breast milk via pumping isn’t all that fun and takes quite a bit of time and effort. Perhaps one of these days I’ll find the time to add an “Adventures in Lactation” diary page to give everyone a glimpse of the little absurdities that are involved in “expressing myself”.
So we’re getting there, the only thing holding us up from release is the monitoring of her SP02 readings. Back around 6 days ago when the pheno was still quite high in her system she had a dip in her readings just after dylantin dose which the doctors think could have been attributed to the dylantin but the policy is when this happens with a newborn or small baby they have an observation period of 7 days to insure it doesn’t happen again before releasing from hospital.
She seems to be able to do this well enough on her own in the late morning to early afternoon before and after that time she still seems to need help to wake-up.
Her pheno dose is gradually being moved back to her last evening feeding (11pm-12pm) so that we can let her sleep a little longer overnight and not have to struggle with feeding a sleepy baby. We’ll need to wake her at 4-5am for the first morning feeding.
She has a definite ”wake and play” time between late morning and early afternoon. She’s making noises and actually crying in her little way. She’s looking around and will look straight at mom or dad or the nurse during a cuddle and feed and seems to also like staring at the overhead lights. The nurses think she’s ready to try breastfeeding today during her more awake feeding times. It will be great if she and I manage to move to that method of feeding as expression of breast milk via pumping isn’t all that fun and takes quite a bit of time and effort. Perhaps one of these days I’ll find the time to add an “Adventures in Lactation” diary page to give everyone a glimpse of the little absurdities that are involved in “expressing myself”.
So we’re getting there, the only thing holding us up from release is the monitoring of her SP02 readings. Back around 6 days ago when the pheno was still quite high in her system she had a dip in her readings just after dylantin dose which the doctors think could have been attributed to the dylantin but the policy is when this happens with a newborn or small baby they have an observation period of 7 days to insure it doesn’t happen again before releasing from hospital.
6 Comments »
August 11, 2008 @ 10:37 am
She’s so beautiful! Hopefully she’ll be breast feeding soon Jenn. You’re giving her the best by “expressing yourself”. Thinking of you daily.
August 11, 2008 @ 2:05 pm
Sounds like she’s making lots of progress! I can’t wait to hear that you’re heading home with her.
Saturday, August 9, 2008
August 9, 2008 @ 12:42 am
Today saw more improvements in Janna’s level of alertness. She’s now looking around with those deep blue-gray newborn eyes of hers, staring at faces and at light sources overhead. She’s also finding her voice more and more and actually had some fussy moments today. I didn’t mind them one bit.
She had her day “10″ MRI today - they squeezed her in early as this time of year the MRI is closed for maintenence. Wendy the specialized nurse for the Neurology team said little J was also a little fussy for her before the MRI so she took the time to feed her and settle her in a bit.
I gave Janna two feedings today and she went through them even better for me than she had in the past. It was no longer necessary to support her chin and encourage her to latch. She’s now seemed to figure that out on her own. She was alert enough today to have a bit of a “playtime” consisting of just making noises with her, looking into her eyes when she stared up at me, holding her hand and giving her lots of love and cuddles.
One of the Neurologists expressed interest in following Janna’s progress after we are discharged. He wanted to insure we have access to all of the support we require and basically said his door is always open to us.
So things look good for a discharge soon. There are a few metabolic test results to come in and it sounds like they want to continue to observe little J a few days longer just to make sure she’s on the right dosage of anti-seizure meds (Pheno) before they send us on our way.
She had her day “10″ MRI today - they squeezed her in early as this time of year the MRI is closed for maintenence. Wendy the specialized nurse for the Neurology team said little J was also a little fussy for her before the MRI so she took the time to feed her and settle her in a bit.
I gave Janna two feedings today and she went through them even better for me than she had in the past. It was no longer necessary to support her chin and encourage her to latch. She’s now seemed to figure that out on her own. She was alert enough today to have a bit of a “playtime” consisting of just making noises with her, looking into her eyes when she stared up at me, holding her hand and giving her lots of love and cuddles.
One of the Neurologists expressed interest in following Janna’s progress after we are discharged. He wanted to insure we have access to all of the support we require and basically said his door is always open to us.
So things look good for a discharge soon. There are a few metabolic test results to come in and it sounds like they want to continue to observe little J a few days longer just to make sure she’s on the right dosage of anti-seizure meds (Pheno) before they send us on our way.
5 Comments »
August 9, 2008 @ 1:11 am
I appreciate this blog so much, thank you for keeping us informed Jenn and Tim. Janna looks so wonderful in your arms!
August 9, 2008 @ 5:01 pm
I’m glad she’s showing so much progress! It would be great to have access to the neurologist - if any problems do develop you’ll be able to get help immediately!
I’m looking forward to hearing that Janna’s on her way home.
August 9, 2008 @ 6:43 pm
Janna! You look so cute and sweet and it was so lovely to meet you. I will be through Vancouver, and then Chilliwack on around the 15th and would be so tickled to see you and your ma n’ pa.
xoxoxoxoxoxooooo
August 9, 2008 @ 8:28 pm
It is wonderful to see that there are some improvments in Janna’s level of alertness. This sounds to me like it is a good sign of things to come. I hope that things continue to go well and your sweet baby is home where she belongs.
Our thoughts and prayers are with you all.
Cathy
Thursday, August 7, 2008
August 7, 2008 @ 11:43 pm
Yesterday was a tough day for the both of us. It’s not easy to hear that your newborn child has suffered damage to her brain via an apoxic (or lack of oxygen) event. Something you’d never think could happen in todays world but we appear to be proof that it still sometimes does.
Today was a GOOD day and we’re focussing on that and little Janna as we take time now to get to know our daughter without her IVs, brain monitoring and feeding tube. She’s still fairly sedated. They stopped the Dylantin but it will take awhile to have it leave her system. Her Pheno levels are now dropping to a theraputic level and eventually when her little liver is able to metabolize it better it will not have as much of a sedative affect on her throughout the day.
I had a wonderful cuddle time with her this morning after her nurse gave her an early bottle feeding. She is getting more and more alert and I love to see those eyes open if only half-way during a feed. During our cuddle I had her laying down on my chest with her head resting on my shoulder positioned to see Tim in the chair opposite me so he could share in the joy of just loving her. While we were chatting she, in that jerky newborn way, picked up her head and turned it inwards to me. This both delighted and surprised me. It seemed she was turing towards the sounds of her mother and that left me beaming, it’s an excellent sign and these days every “normal” newborn infant behaviour she exhibits makes my heart soar.
She finished her two o’clock bottle feed in 15 minutes which is more excellent news. She is also an easy burper and her gag reflex is good which is more “normal” good news. I had a feeding time with her around 5 this evening and while she was able to get through most of it fairly quickly she stalled out on the last 5mls. This was her Med feeding so we had to get as much into her as possible so we continued trying for another half hour and did get a bit more down before deciding to let it go.
Janna has wonderful nurses and I’m taking the time to learn to care for her and work with her little quirks, they are very patient and I appreciate them immensely.
Today was a GOOD day and we’re focussing on that and little Janna as we take time now to get to know our daughter without her IVs, brain monitoring and feeding tube. She’s still fairly sedated. They stopped the Dylantin but it will take awhile to have it leave her system. Her Pheno levels are now dropping to a theraputic level and eventually when her little liver is able to metabolize it better it will not have as much of a sedative affect on her throughout the day.
I had a wonderful cuddle time with her this morning after her nurse gave her an early bottle feeding. She is getting more and more alert and I love to see those eyes open if only half-way during a feed. During our cuddle I had her laying down on my chest with her head resting on my shoulder positioned to see Tim in the chair opposite me so he could share in the joy of just loving her. While we were chatting she, in that jerky newborn way, picked up her head and turned it inwards to me. This both delighted and surprised me. It seemed she was turing towards the sounds of her mother and that left me beaming, it’s an excellent sign and these days every “normal” newborn infant behaviour she exhibits makes my heart soar.
She finished her two o’clock bottle feed in 15 minutes which is more excellent news. She is also an easy burper and her gag reflex is good which is more “normal” good news. I had a feeding time with her around 5 this evening and while she was able to get through most of it fairly quickly she stalled out on the last 5mls. This was her Med feeding so we had to get as much into her as possible so we continued trying for another half hour and did get a bit more down before deciding to let it go.
Janna has wonderful nurses and I’m taking the time to learn to care for her and work with her little quirks, they are very patient and I appreciate them immensely.
7 Comments »
August 8, 2008 @ 2:31 am
Aaawww I love this post… So wonderful to read about the special bond between a mom and her new baby Jenn!! Baby Janna is doing so well, she’s an inspiration to us all
Beautiful photos, keep them coming… I’ve been checking this blog daily, wanting to know how Janna is doing, but even moreso the photos are a real bonus!
Awesome parents, Im sure Janna already knows that
August 8, 2008 @ 10:30 am
Hi Tim & Jen:
So good to hear that Janna is feeding well and doing normal baby things. So good that you got to cuddle with her. I pray that she will be well enough to go home with you this week-end and that you will continue to see signs that she is a normal baby girl. I loe to see the photos too. Love to all of you!
So good to hear that Janna is feeding well and doing normal baby things. So good that you got to cuddle with her. I pray that she will be well enough to go home with you this week-end and that you will continue to see signs that she is a normal baby girl. I loe to see the photos too. Love to all of you!
August 8, 2008 @ 3:48 pm
I was away for two days and just catching up on your Janna Blog. I am still positive that Janna will surprise all the Doctors. So much love and prayers surround your family and these positive energies are bound to accomplish much. Take care Jenn and Tim, I hope Janna gets to come home soon.
August 8, 2008 @ 3:49 pm
Things are looking up! Like was mentioned earlier, the brain’s very resilient at that age, so hopefully there are no lasting effects. In any event, Janna couldn’t do better for parents. Thinkin’ of you all.
Like was mentioned earlier, the brain’s very resilient at that age, so hopefully there are no lasting effects. In any event, Janna couldn’t do better for parents. Thinkin’ of you all.Jim
August 8, 2008 @ 10:20 pm
The pictures are adorable…she’s absolutely beautiful! I am so thrilled to hear some of the normal developmental things happening too. I’ve been waiting to hear some of that mentioned. So glad things are looking up for you guys!!! Thanks for keeping us updated…you all continue to be in my thoughts and prayers.
August 8, 2008 @ 11:23 pm
What a little sweetheart! really good to hear Janna is feeding well and responding to her mom’s voice too. Hoping you get to take her home soon and that she continues to improve. Best wishes as always.
August 8, 2008 @ 11:44 pm
Yeah!! Go little Janna! She’s just as tough as her mum & dad . Thinking of you guys daily. Keep up the smiles - you’re both such positive people.
. Thinking of you guys daily. Keep up the smiles - you’re both such positive people.August 7th, 2008
August 7th, 2008 POST #1
I’m not quite sure how to go about writing this post, but I’ll give it a go. Jenn and I met with the neurologist team late this afternoon for discussion on their findings with the day one and three MRI’s. We knew that the day one MRI didn’t look as good as they had hoped. Turns out the results from the day three MRI were even worse, which suggests that the brain trauma happened either in labour, delivery, or shortly thereafter.
Had the day three MRI seen an improvement, evidence would then suggest that the trauma happened late in pregnancy. The bloodwork shows no sign of infection, so all anti-biotic treatments have ceased. Dylantin dosage has also stopped and the feeding tube has been removed since she is now able to drink milk on her own; which is around 75ml per feeding, so all those tubes and IV’s are now gone.
With regard to the brain trauma, the doctors cannot pinpoint a cause, nor are they willing to pin down what kind of effect this may have on Janna’s future. So in short, they tell us there is some extent of brain trauma, but we don’t know how it will play out in the coming months and years of her life. So the wait and see thing is much longer now. Who knows, there may be minimal outward effects; we just don’t know.
In looking at her and her behaviour, you’d never know there was any sort of trauma that took place. The doctors could have told us that the MRI’s showed no signs of distress and we would have believed them. I think the doctors are even surprised that, she’s able to feed on her own. We have a truly wonderful nursing staff tending to Janna. They also affirm that Janna really doesn’t show any significant signs of brain trauma, so we just have to go with what we see in her, which is actually at this time alot to go on.
Hopefully Janna will be able to go home with us this weekend or at the latest early next week.
Permalink
I’m not quite sure how to go about writing this post, but I’ll give it a go. Jenn and I met with the neurologist team late this afternoon for discussion on their findings with the day one and three MRI’s. We knew that the day one MRI didn’t look as good as they had hoped. Turns out the results from the day three MRI were even worse, which suggests that the brain trauma happened either in labour, delivery, or shortly thereafter.
Had the day three MRI seen an improvement, evidence would then suggest that the trauma happened late in pregnancy. The bloodwork shows no sign of infection, so all anti-biotic treatments have ceased. Dylantin dosage has also stopped and the feeding tube has been removed since she is now able to drink milk on her own; which is around 75ml per feeding, so all those tubes and IV’s are now gone.
With regard to the brain trauma, the doctors cannot pinpoint a cause, nor are they willing to pin down what kind of effect this may have on Janna’s future. So in short, they tell us there is some extent of brain trauma, but we don’t know how it will play out in the coming months and years of her life. So the wait and see thing is much longer now. Who knows, there may be minimal outward effects; we just don’t know.
In looking at her and her behaviour, you’d never know there was any sort of trauma that took place. The doctors could have told us that the MRI’s showed no signs of distress and we would have believed them. I think the doctors are even surprised that, she’s able to feed on her own. We have a truly wonderful nursing staff tending to Janna. They also affirm that Janna really doesn’t show any significant signs of brain trauma, so we just have to go with what we see in her, which is actually at this time alot to go on.
Hopefully Janna will be able to go home with us this weekend or at the latest early next week.
Permalink
14 Comments »
August 7, 2008 @ 2:31 am
Sweet little Janna looks fantastic for a “sick” baby. I think she has already surprised the Dr.’s with how strong she is turning out to be, must be getting that from her strong momma. Our thoughts are with the Epp family. I will see you soon, you need anything and you just say the word.
August 7, 2008 @ 2:41 am
Well she sure looks like a beautiful baby! Thinking of you, and keeping my fingers crossed that she can go home with you soon.
August 7, 2008 @ 6:08 am
((Hug)) Just take one day at a time. Janna’s a beautiful, strong baby who’s already shown she’s a fighter. Hopefully the effects will be minimal (if anything!)
August 7, 2008 @ 6:49 am
Janna is beautiful, and I will continue to keep all of you in my thoughts and prayers.
August 7, 2008 @ 7:59 am
My thoughts are with you all of you during this time. Janna is a beautiful baby girl and is a strong fighter. All the best.
August 7, 2008 @ 8:03 am
I hope Janna comes home very soon. The brain is very resilent at this age. I hope she continues to surprise all of her doctors. Our thoughts and prayers are with your family.
August 7, 2008 @ 9:35 am
She is so beautiful! My thoughts and prayers will be with you all in the weeks ahead.
August 7, 2008 @ 9:44 am
What a beautiful baby. I wish you the best and hope that she will be home and well soon. Hang in there, we are all there with you !
August 7, 2008 @ 10:02 am
You guys continue to be in my thoughts and prayers. I hope your beautiful girl just continues to prove her strength and surprise everyone, and is home with you very soon!
August 7, 2008 @ 11:02 am
Our thoughts and prayers are with you and baby Janna. She is a beautiful little girl! Hope you guys can take her home soon! (hugs)
August 7, 2008 @ 1:53 pm
Good to hear she may be able to be home with you on the weekend! She’s beautiful!
I have been thinking what an incredible fighter she is and so I searched the web for the origin and meaning of the name Janna as I believe these things are all connected…what we name children, the day on which they were born etc….
The overall concensus is that Janna means flourishing, fruitful, garden….so something that that starts out small and sometimes under difficult circumstances but some encouragement and will of its own becomes something strong, healthy, beautiful and giving.
Looks like Janna’s got it figured out and is heading in that direction already. Sounds like she’s got a great team of support at the hospital and at home to give her the encouragement she needs to flourish.
Jane
August 7, 2008 @ 2:10 pm
Wishing you guys all the best and keeping little Janna in my thoughts.
Shayne
August 7, 2008 @ 2:43 pm
She’s just lovely! You are all in my thoughts. Hope you will all be home soon! Sending you the patented Lab Board Vibes!
August 7, 2008 @ 11:46 pm
Shes a doll….!!! Ive thought about you all every day since I first heard about this. I will continue to send my “cyber” strength and thoughts….stay strong little one!
Take care of you guys too and update when you can - I will be watching for your updates!! (hugs)
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