Some quick stats since our last update:
Loie weight: 10.6 pounds!
Home nurse visits: every other week
Home occupational therapy: once per week
Referral for Physical therapy to start at once every other week
Referral for head shaping helmet to correct positional plagiocephaly :( - we just can't seem to get her head shape back to normal!!
Oxygen: Weaning!! in a few weeks, she should be able to be off the O2 during the day, and back on it for over night sleeping!
Loie can: Lift head and shoulders and look left/right during tummy time
Hold and control head with supported sitting
Get both hands to midline and into her mouth! (and onto her canula... )
Track objects left to right, usually pretty smoothly
Coo, smile, nearly laugh
Roll to right side with ease
roll to left side...... begrudgingly lol
Grasp toy and bring to mouth
Starting to grab feet/toes
Pout like no other! She's got the pouty face down
Lennon weight: 30.8 pounds!
Speech therapy: once per week
Infant toddler program: one per month? lost track
Referral to audiology to rule out hearing loss (Infant toddler program did an in home assessment, possible hearing loss in the left ear, but could have also been excessive wax build up)
Lennon can say: Apple, Elmo, Wags, Doo-Wee (Dorothy), Baby, Blue, Go, Out, Ow,Wow,
Dod-er (Dodgers??) and Happy :)
The total eclipse was this last week, and it was madness in Idaho. I just finished a 70 hour work week, and am now back at work on another overtime shift, but it's time for an update!
Loie just had her 6 month NICU follow up clinic! A very big appointment where multiple specialists see her and do an assessment as to how she is meeting milestones, any big red flags for development, etc. We were NERVOUS to get any bad news, but also confident because we know she is a rock star and is doing so well, we jut wanted to show her off!
She did great!!! She showed off all her skills like a champ, and wowed everybody there!
Overall, her development is right on par with that of a 3 month, 10 day old, which is basically her corrected age, so she is right on track for "normal" development.. what!?!?!?! yes!!! This can change, and we are not out of the woods so to speak, but it is a very good sign that miss Loie is proving everyone wrong already. This is the baby that our doctor looked at and told us to let her die because she would not have a quality life. This baby that smiles and coos, and already recognizes us when we pick her up or enter the room. Difficult to let that sink in sometimes. If we had listened, we would be sitting here, with only just a memory of having 2 sweet baby girls.
Loie does have some increased tone in her legs, mainly in her ankles, but the doctor we saw said that it is mild right now. So this tightness could always get worse, but something we can work on in physical therapy. It's also something that if it continues, will likely mean leg braces or AFO's as they are called. Much later down the road, right now we are focusing on her victories today! They were very impressed with her quality of movement and how coordinated she is already. Go Loie!
Afterwards, while she was exhausted (oh well) we visited the NICU to drop off some gifts and to visit with a few of our favorite people over there. They were excited to see Loie and how "big" she is! Big is relative, she is still soooooo very tiny, but these people saw her when she was even tinier, so they totally understand! Actually, she is very low on the growth curve and we are going to be working hard to get her weight gain up. She is gaining consistently, but not catching up at all and remains at the less than 1 percentile for most everything. A major goal we are working towards, is better weight gain.
While we were at the hospital, we ran into the pediatric surgeon who was working with Pearl and her Omphalocele. She was going to do her repair surgery once she was big and strong enough. She is a very kind wonderful woman. Justin flagged her down to say hi. At first, our faces weren't ringing a bell for her, and she had to ask how she knew us (totally understandable) so we said, "oh, our daughter Pearl had an Omphalocele." and she said, "ohhhh okay, did I fix her?" that crushed me a little bit.... I had to tell her, no, unfortunately she passed away. Then she remembered us. She was very sweet, but man, that hurt.
"Did I fix her?"
no. No one could fix her.... :(
I wonder if I will have this feeling forever or if it will gradually subside, but I always have this feeling like I've forgotten something. When I am with Loie, and looking right at her, I feel this strong urge to "go check the baby" like there is another baby to check... When we are all in a room together, I feel like I've left the baby in the other room and I am uneasy knowing that no one is with her. It's not anything that I'm consciously thinking of Pearl, but just a general feeling that I do sub consciously, and it stabs me in the heart each time I do it because I have to remind myself, no, there isn't another baby, this is it. Everyone is here and everyone is okay. Gets me choked up even writing about it. Maternal instincts are strong, that's all I can say.
Lennon is our sweet little Ray of sunshine, as usual! He makes us laugh so hard everyday with his antics and his cute little voice yelling "WOW!" all day long. He is so smart! He loves his Doo-Wee, aka Dorothy the dinosaur. A gift from Big Aunt Debbie and Auntie cousin Kristy. While at speech therapy, he opened up a cupboard and began pointing to random pictures and games so the therapist could list off what each thing was. When he had pointed to the same tub of plastic dinosaurs about 3 or 4 times, he looked at her and said "Doo-wee!!" She looked confused, so I told her that Dorothy is his dinosaur that he loves! We were pretty impressed that he figured that one out! He has much more going on inside than we even realize.. what a smart kid! He also points to the Triceratops on Loies mittens and says "Doo_wee!" he must love dinosaurs!
Summer went by so quickly. We are hoping to get some time to enjoy the last bit before fall comes along and inevitable, the winter... ughhhh. Hoping everyone is enjoying their summers too.
We'll keep you updated
Loie weight: 10.6 pounds!
Home nurse visits: every other week
Home occupational therapy: once per week
Referral for Physical therapy to start at once every other week
Referral for head shaping helmet to correct positional plagiocephaly :( - we just can't seem to get her head shape back to normal!!
Oxygen: Weaning!! in a few weeks, she should be able to be off the O2 during the day, and back on it for over night sleeping!
Loie can: Lift head and shoulders and look left/right during tummy time
Hold and control head with supported sitting
Get both hands to midline and into her mouth! (and onto her canula... )
Track objects left to right, usually pretty smoothly
Coo, smile, nearly laugh
Roll to right side with ease
roll to left side...... begrudgingly lol
Grasp toy and bring to mouth
Starting to grab feet/toes
Pout like no other! She's got the pouty face down
Lennon weight: 30.8 pounds!
Speech therapy: once per week
Infant toddler program: one per month? lost track
Referral to audiology to rule out hearing loss (Infant toddler program did an in home assessment, possible hearing loss in the left ear, but could have also been excessive wax build up)
Lennon can say: Apple, Elmo, Wags, Doo-Wee (Dorothy), Baby, Blue, Go, Out, Ow,Wow,
Dod-er (Dodgers??) and Happy :)
The total eclipse was this last week, and it was madness in Idaho. I just finished a 70 hour work week, and am now back at work on another overtime shift, but it's time for an update!
Loie just had her 6 month NICU follow up clinic! A very big appointment where multiple specialists see her and do an assessment as to how she is meeting milestones, any big red flags for development, etc. We were NERVOUS to get any bad news, but also confident because we know she is a rock star and is doing so well, we jut wanted to show her off!
She did great!!! She showed off all her skills like a champ, and wowed everybody there!
Overall, her development is right on par with that of a 3 month, 10 day old, which is basically her corrected age, so she is right on track for "normal" development.. what!?!?!?! yes!!! This can change, and we are not out of the woods so to speak, but it is a very good sign that miss Loie is proving everyone wrong already. This is the baby that our doctor looked at and told us to let her die because she would not have a quality life. This baby that smiles and coos, and already recognizes us when we pick her up or enter the room. Difficult to let that sink in sometimes. If we had listened, we would be sitting here, with only just a memory of having 2 sweet baby girls.
Loie does have some increased tone in her legs, mainly in her ankles, but the doctor we saw said that it is mild right now. So this tightness could always get worse, but something we can work on in physical therapy. It's also something that if it continues, will likely mean leg braces or AFO's as they are called. Much later down the road, right now we are focusing on her victories today! They were very impressed with her quality of movement and how coordinated she is already. Go Loie!
Afterwards, while she was exhausted (oh well) we visited the NICU to drop off some gifts and to visit with a few of our favorite people over there. They were excited to see Loie and how "big" she is! Big is relative, she is still soooooo very tiny, but these people saw her when she was even tinier, so they totally understand! Actually, she is very low on the growth curve and we are going to be working hard to get her weight gain up. She is gaining consistently, but not catching up at all and remains at the less than 1 percentile for most everything. A major goal we are working towards, is better weight gain.
While we were at the hospital, we ran into the pediatric surgeon who was working with Pearl and her Omphalocele. She was going to do her repair surgery once she was big and strong enough. She is a very kind wonderful woman. Justin flagged her down to say hi. At first, our faces weren't ringing a bell for her, and she had to ask how she knew us (totally understandable) so we said, "oh, our daughter Pearl had an Omphalocele." and she said, "ohhhh okay, did I fix her?" that crushed me a little bit.... I had to tell her, no, unfortunately she passed away. Then she remembered us. She was very sweet, but man, that hurt.
"Did I fix her?"
no. No one could fix her.... :(
I wonder if I will have this feeling forever or if it will gradually subside, but I always have this feeling like I've forgotten something. When I am with Loie, and looking right at her, I feel this strong urge to "go check the baby" like there is another baby to check... When we are all in a room together, I feel like I've left the baby in the other room and I am uneasy knowing that no one is with her. It's not anything that I'm consciously thinking of Pearl, but just a general feeling that I do sub consciously, and it stabs me in the heart each time I do it because I have to remind myself, no, there isn't another baby, this is it. Everyone is here and everyone is okay. Gets me choked up even writing about it. Maternal instincts are strong, that's all I can say.
Lennon is our sweet little Ray of sunshine, as usual! He makes us laugh so hard everyday with his antics and his cute little voice yelling "WOW!" all day long. He is so smart! He loves his Doo-Wee, aka Dorothy the dinosaur. A gift from Big Aunt Debbie and Auntie cousin Kristy. While at speech therapy, he opened up a cupboard and began pointing to random pictures and games so the therapist could list off what each thing was. When he had pointed to the same tub of plastic dinosaurs about 3 or 4 times, he looked at her and said "Doo-wee!!" She looked confused, so I told her that Dorothy is his dinosaur that he loves! We were pretty impressed that he figured that one out! He has much more going on inside than we even realize.. what a smart kid! He also points to the Triceratops on Loies mittens and says "Doo_wee!" he must love dinosaurs!
Summer went by so quickly. We are hoping to get some time to enjoy the last bit before fall comes along and inevitable, the winter... ughhhh. Hoping everyone is enjoying their summers too.
We'll keep you updated
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