We've had a pretty uneventful couple of days, which is a huge
blessing! Lydia is essentially on a feed and grow plan. She's having
some minor digestive slow downs but the nurse last night discovered that
the feeding order was for 6ccs over 3 hours then off for one hour. Lydia has been
getting 6ccs EACH hour for 3 hours then off an hour. No wonder she
hasn't been digesting all of it! Yesterday I did have the mother's joy
of cleaning up spit up though...so that was fun. We'll see what the
doctor says this morning since she seems to be able to tolerate more
than 2ccs an hour, but maybe not quite 6 an hour.
Penny is
doing pretty well too. She's still on the oscillator but is steadily
getting weaned down. I'm hoping she can go to the vent today or
tomorrow and then to the high flow canula (the little tube under her
nose rather than big tube down her throat) soon. I'm really looking
forward to hearing her little voice again. Because she gets really
angry when she wakes up with the tube down her throat, she tends to grab
at it and throw "silent fits". When she can't calm herself or be
calmed down with touch, she has to get some medicine to calm her down.
Even though I'm grateful that she's getting rest and that the medicine
is available, it's hard for me to see my little girl in a drug induced
sleep. I want to see her little personality again...in more ways than
just in her fits. There is a lot of personality in there, I can tell.
Finally
I'd like to ask for specific prayer for our friends the Doyle family.
We met them when we got to LeBonheur and they are just the sweetest
people. Their little girl Faith was born with some medically
insurmountable challenges. I don't quite understand all of them, but
one is "Brittle Bone Disease" along with blindness, and a few others.
The doctors have told the Doyles that if she goes home it will be with
hospice care. They've prepared themselves for saying goodbye to their
little girl and signed DNR papers to keep from prolonging a life for her
that is far from comfortable, but that has to be the absolute hardest
thing I can imagine.
Today they are having a
dedication service in their room with family, friends, and some of their
new hospital friends. It should be a really sweet time, and my prayer
is that the people who don't know the Lord (or who don't know the
strength, power, and love of the God we serve) would not be able to miss
His presence there today. I pray that it's not a sad time for the
family, but a time of celebration of Faith's life. And finally, as the
parents have expressed to us, I pray that sweet little Faith would be
taken to her eternal home before they take her to her earthly home.
What
a wonderful time without broken bones, tracheotomies and painful
medical tests she's going to have when she gets to heaven. The song by Todd
Agnew called "Martyr's Song" keeps running through my mind. What a
precious picture of how God can't wait to show us all the wonderful
things He has for us when we get there. To this world, little Faith may
seem like some kind of cruel joke. To put a baby and a family through
so much heartache and pain doesn't seem loving. To me, her life
represents a perfect picture of how we're all broken. We are all
brittle, blind, weak people who need the help of our loving father to
feed us, clean us off, protect us from harm...just like Faith can't do
anything on her own, neither can we. And when this life is over, be it
weeks, months, or years, those who have allowed Him to walk with them
through life, will be taken to this place of freedom and peace and
ultimate healing and perfect sight. Phew! I'm almost jealous of little
Faith.
Ok, now I have to go wake Jonathan up so we
can make it to this service on time! We hope you all have a wonderful
day and we appreciate you more than you'll ever know. We don't feel
alone on this journey and it's because God has given us you!
Monday, January 23, 2012
1-what day is it again?
Everybody's favorite Chus (Lydia and Penelope of course) would like
to thank everyone from the bottom of their tiny and surgically repaired
hearts for the prayers and support they've received. If they were able
to type they would say so I'm sure. For now you'll have to trust me.
Penelope is still on the road to recovery after her surgery. It's been a little tougher for her than it was for Lydia as she's had to have a few doses of pain medicine to keep her calm. She's still on the oscillator and slowly but steadily being weaned and tolerating it pretty well. She was started back on small feeds that will be increased over the next few days which should make her a happier camper. Her third blood transfusion went in yesterday so that should make her feel a bit better too. Her little cheeks are starting to fill out a little more everyday and she's still not afraid to use her arms as weapons at any nurse/respiratory therapist/lab tech who dares to disturb her. She's starting to get a reputation! The best news of all is that the endocrinology team here put her on once a day blood sugar checks because she's been holding so steady without any insulin. This is a HUGE praise! That transient congenital diabetes never knew what hit it! I must have been Penny's arm!
Lydia.......drum roll please.......pooped! Twice! She's an over-achiever. Her feeds were increased and she's had very little or no residual (another word for aspirate or left over milk in her tummy from the last feed when it's time for the next one) so it looks like her little system figured things out. There's something very intimate about thanking the Lord for poop. So join me in doing just that. She's also been off of her oxygen for almost 2 days now. I didn't want to say anything before for fear of jinxing it...we were even referring to it being O-F-F around her so she wouldn't "know". Her canula's been completely taken off and the only tube she has left on her pretty little face is her feeding tube which goes in her nose. We're really very excited about this milestone being reached, mostly because I personally didn't expect it to come so soon!
On a more personal note, I plan to return to work on Friday (not full time, probably 1-2 times a week) in order to keep from going on official maternity leave until the girls come home. I'm already finding it difficult to juggle in my heart all of the things that come with having preemie twins in the hospital and I'm not sure if going back to work will be a welcome distraction or if it will be just way more than I can handle. I've already been jumping on the "grumpy train" more times that I'd prefer and would like to figure out how to manage this stress without it turning me into a basket case. Today's plan of attack (POA) was church, food, nap, then go to the hospital. It worked pretty well. Yesterday's POA was chocolate ice-cream and crying. That worked too. It seems the theme here is flexibility....and food.
Briefly about food...we have TONS. Don't worry about us not eating. We have almost as many leftovers as we have adorable pink outfits! We'll let you know if we start to run low :)
Specific Prayer:
Penelope is still on the road to recovery after her surgery. It's been a little tougher for her than it was for Lydia as she's had to have a few doses of pain medicine to keep her calm. She's still on the oscillator and slowly but steadily being weaned and tolerating it pretty well. She was started back on small feeds that will be increased over the next few days which should make her a happier camper. Her third blood transfusion went in yesterday so that should make her feel a bit better too. Her little cheeks are starting to fill out a little more everyday and she's still not afraid to use her arms as weapons at any nurse/respiratory therapist/lab tech who dares to disturb her. She's starting to get a reputation! The best news of all is that the endocrinology team here put her on once a day blood sugar checks because she's been holding so steady without any insulin. This is a HUGE praise! That transient congenital diabetes never knew what hit it! I must have been Penny's arm!
Lydia.......drum roll please.......pooped! Twice! She's an over-achiever. Her feeds were increased and she's had very little or no residual (another word for aspirate or left over milk in her tummy from the last feed when it's time for the next one) so it looks like her little system figured things out. There's something very intimate about thanking the Lord for poop. So join me in doing just that. She's also been off of her oxygen for almost 2 days now. I didn't want to say anything before for fear of jinxing it...we were even referring to it being O-F-F around her so she wouldn't "know". Her canula's been completely taken off and the only tube she has left on her pretty little face is her feeding tube which goes in her nose. We're really very excited about this milestone being reached, mostly because I personally didn't expect it to come so soon!
On a more personal note, I plan to return to work on Friday (not full time, probably 1-2 times a week) in order to keep from going on official maternity leave until the girls come home. I'm already finding it difficult to juggle in my heart all of the things that come with having preemie twins in the hospital and I'm not sure if going back to work will be a welcome distraction or if it will be just way more than I can handle. I've already been jumping on the "grumpy train" more times that I'd prefer and would like to figure out how to manage this stress without it turning me into a basket case. Today's plan of attack (POA) was church, food, nap, then go to the hospital. It worked pretty well. Yesterday's POA was chocolate ice-cream and crying. That worked too. It seems the theme here is flexibility....and food.
Briefly about food...we have TONS. Don't worry about us not eating. We have almost as many leftovers as we have adorable pink outfits! We'll let you know if we start to run low :)
Specific Prayer:
- Penny's comfort and peace as she's healing
- Penny weaning off of the oscillator
- Penny tolerating more feeds
- Penny's bloodsugars to stay stable
- Lydia tolerating feeds better
- Lydia to remain off her oxygen
- Both protection from NEC
- Both strength and growth
- Bethany staying off the "grumpy train"
- Jonathan protection from Bethany and the aforementioned train
1-14-15 Update
(by Jonathan from http://jonathan-chu.blogspot.com)
Since Penelope got a whole day to herself yesterday, I'll start with Lydia's update.
Since Penelope got a whole day to herself yesterday, I'll start with Lydia's update.
Lydia - 1.210g (2lbs 7.50oz)
Lydia's
day yesterday was focused on the most notorious thing about babies.
Poopy diapers. For Lydia though, it was the lack of one. Since you've
chosen to follow us on this journey, some things that you don't really
want to discuss have to be discussed. Since her surgery she hadn't
produced a nice poop yet, which the doctors really do care about! She
was having some aspirate (left over milk in her tummy when it was time to eat again) that was all milk so it was a sign that she
wasn't digesting anything and it was just sitting in her stomach. The
nurses look at weight, how much, what color all of that is the same as
when you bring a new baby home, they watch as well. So that was the
goal for Lydia yesterday. But near the end of the first shift
she hadn't really produced a deuce yet so she had to have a bit of
"encouragement" from the nurses. She was given some medicine that,
within due time helped the situation to pass. She looked much happier
after that and had little to no aspirate. Today she hasn't had any
saggy britches yet but she's eating well with only small amounts of aspirate
again. Our continued concern is that she will develop NEC and obviously a well working
digestive system to help her produce waste normally. Aside from that,
Bethany has been kangaroo caring with her every day for at least an hour
to two which has been a wonderful experience for both of them! We're
praying for continued stability and growth.
Penny - 860g (1 lb 7.90oz)
After
the eventful day of surgery yesterday, Penny had a relatively
uneventful evening. There have been a small number of speed bumps in
the road to recovery that we're praying she will quickly be over. This morning her culture
from a few days ago revealed that she did in fact have an infection.
Gram positive cocci that was identified as the common staph that they
see here. The antibiotics that she is on is a broad spectrum one
that takes care of 99% of all bugs here in the NICU. It's so difficult
to stay completely sterile here in the NICU. We scrub a good two
minutes before coming in, we use foam alcohol between touching each baby,
to keep from cross contaminating, as well as after touching anything at
all. Nurses use all new everything, gloves, masks, tubing, syringes and
bedding when working with the girls. But even with all of that, there
are germs everywhere that can get in to the body, especially since they
have so many foreign objects running in to them. The doctors will
continue to watch the cultures to see if they continue to
grow anything more.
Penny
was moved from a traditional vent machine to an oscillator. It's really easy to see
this as being a step back from the vent but the nurses feel it's more of
a lateral step. Not worse, not better. The oscillator is a machine
that continuously puffs air in to her lungs, causing the alveoli to stay
inflated. With the traditional vent machine, imagine a balloon being
blown up and released over and over. With time the balloon loses
its flexibility and begins to look flabby and no longer taut. This is
what the vent can do to the lungs as well as irritate the alveoli over
longer periods of time which is not what they want! The hope is to
wean her off the oscillator over the next few days so it's really up to
her to start using her lungs again and working to keep her saturation
levels up. The edema around her lungs is still there and they are still
administering the Lasix (a diuretic) to help work that out.
01.15
Today, so far, has been relatively quiet.
Lydia
has had a few apnea sessions which is more normal for her case but she is
still not digesting properly. The nurse just drew back around ten cc's
worth of milk from her tummy so they will be holding feeds for three
hours.
Penny is being weaned off of the oscillator bit by bit and is now getting a tiny bit of milk to start her back on feeds.
Specific prayer requests for:
- Penny to have less edema around her lungs and to start working her lungs more so she can be taken off of the vent all together.
- Penny to fight off this infection.
- Penny to start adjusting to feeds again and to start gaining more weight.
- Penny to not have any issues with NEC.
- Lydia to start digesting properly and to start making poops (weird but necessary!)
- Lydia to be fully weaned off of O2 and to not need her nasal canula anymore.
- Lydia to also not have any issues with NEC.
We're thankful for this calm day and are trying to catch up on some rest!
Thank you for continuing on this journey with us!
Penny's out of surgery
Thank you for praying! Penny's PDA surgery went well and she's not
having the second surgery today! There is a slight coarct but not one
that is causing any complications right now. She'll be monitored
closely over the next months and years, but for today, she's doing
great!
The surgeon said that her ductus was twice the size of her aorta...that's HUGE! She should feel much better now with that blood flowing the right way. Praise the Lord from whom ALL blessings flow. Even if that means the blessing of spending a morning trusting Him. Thank you for trusting Him with us!
Very gratefully - The Chus
The surgeon said that her ductus was twice the size of her aorta...that's HUGE! She should feel much better now with that blood flowing the right way. Praise the Lord from whom ALL blessings flow. Even if that means the blessing of spending a morning trusting Him. Thank you for trusting Him with us!
Very gratefully - The Chus
Penny holding her daddy's hand this morning
Lydia saying "I love you" to her sister
The surgeon explaining things to us post-op
The whole team...including our favorite neonatalogist on the far right (Dr. Goodwin Samson)
Penny's in surgery
Penelope's surgery started and is close to being finished. Please pray
that the coarctation doesn't show at all! Thank you so much.
1-12 Surgery Tomorrow
We've got a plan! The cardio team here met and decided that Penelope
needs to have her PDA closed tomorrow morning at 7:30. It will be the
same bedside surgery that Lydia had, the only difference is that they
will have an OR waiting just in case the closing of the PDA causes
complications with her possible coarctation. If they close the PDA and
see that her aorta is narrowing (by checking bloodpressures in her arms
and legs as well as an immediate echo) they will whisk her away to the
OR and do the coarct repair surgery despite her size. Right now, the
complications she's having because of the PDA are such that they cannot
wait until she reaches the ideal size for the coarct surgery. The risks
are higher for such a small baby but the risks of not doing the surgery
are even greater than that. So, this is the plan.
Jonathan and I are, understandably, pretty nervous about this. It will be a loooong hour's wait while they do the PDA surgery to see if she'll need the coarct repair or not. They say that time flies when you're having fun, maybe time will fly while we're praying our booties off! We would like to ask you to be praying your booties off too! Please pray for Drs Goldberg and Knott-Craig (the surgeons), Andrea (his nurse), and the rest of the OR team that will be doing the surgery. Also, pray for Robin and Amy (the girl's nurses), the neonatalogist, and the NICU staff that will be caring for her after the surgery. Finally, pray for our sweet Penny to have comfort and strength, to only have the PDA and no coarctation, and if she does have to have the coarct repaired pray that the Lord would protect her from any complications of the surgery.
On a personal note, she's been put on NPO (no food in her tummy) until a few days after the surgery. This means she'll be hungry and MAD about it like Lydia was. Please pray that I'll handle it well. It's actually a good sign if she gets hungry and mad, rather than lethargic. It just makes it very difficult for us to watch her and not be able to help.
Thank you so much for your prayers as we face this next section of the NICU roller coaster.
Love, The Chus
Jonathan and I are, understandably, pretty nervous about this. It will be a loooong hour's wait while they do the PDA surgery to see if she'll need the coarct repair or not. They say that time flies when you're having fun, maybe time will fly while we're praying our booties off! We would like to ask you to be praying your booties off too! Please pray for Drs Goldberg and Knott-Craig (the surgeons), Andrea (his nurse), and the rest of the OR team that will be doing the surgery. Also, pray for Robin and Amy (the girl's nurses), the neonatalogist, and the NICU staff that will be caring for her after the surgery. Finally, pray for our sweet Penny to have comfort and strength, to only have the PDA and no coarctation, and if she does have to have the coarct repaired pray that the Lord would protect her from any complications of the surgery.
On a personal note, she's been put on NPO (no food in her tummy) until a few days after the surgery. This means she'll be hungry and MAD about it like Lydia was. Please pray that I'll handle it well. It's actually a good sign if she gets hungry and mad, rather than lethargic. It just makes it very difficult for us to watch her and not be able to help.
Thank you so much for your prayers as we face this next section of the NICU roller coaster.
Love, The Chus
1-11
We got some fantastic news and some not so fantastic news today about
our sweet Penelope. We'll start with the positive! Her Turners
Syndrome test (as well as the rest of her chromosomes) was negative!!!
We were beyond thrilled about this and so grateful to the Lord for
protecting her from that particular hurdle in life. The less than
fantastic news was that she is having some pulmonary edema (fluid in her
lungs) which has been causing her more frequent de-sats (low
oxygenation in the blood) and also her heart is "generous" which sounds
like good news but it really means that it's enlarged. These are very
common side effects of the open ductus and were expected eventually. We
were just hoping to postpone them a bit more.
This is the part we're still a little confused on so if you're confused after reading it then you're in good company. Well, our company...but I think we're pretty fun! OK, back to business. The Aortic Coarctation that we had thought was completely gone, seems to still be a concern. She has a slight narrowing in the top part of her aorta, as well as a "shelf" near the opening of the PDA but it's not in the place that they normally see a "shelf" (it's not a contraductal shelf for those of you who know what that means). The cardiologist (Dr Chinn) came and drew us a picture to explain it for the very reason that I'm having trouble explaining it now. The point is, if they do the PDA surgery just like they did Lydia's it could cause problems with the flow of blood around that narrowing and this "shelf". If this happens, she would need the more invasive surgery to repair it, but she's not anywhere close to the right size to be able to handle that kind of surgery. The side effects include heart failure, but the side effects of leaving the PDA open at this point include heart failure too. This is when I'm very very glad that we have the best doctors and medical team possible to help guide us in this decision. Tomorrow there is a meeting of all the cardiologists and cardiovascular surgeons to discuss all the cases they are treating right now. Penelope's case will be discussed and they'll come up with the best plan of action.
In the mean time, Penny's been intubated to help her breath around the pulmonary edema. The silver lining on that is that her big 'ole CPAP apparatus is gone and we can see her pretty little face! I don't have any pictures to post right now but we'll get some a little later and post them.
Lydia is holding pretty steady. She's still seemingly unexplainably angry and throws fits often, but if I were in her situation I'd be pretty mad about it too. Today she was throwing a fit that she was having trouble calming down from so we went ahead and did kangaroo time and she calmed down immediately. That did wonders for me feeling like a mama, and for both of our stress levels!
Something we haven't mentioned before but should go ahead and start praying against is the possibility of them developing Necrotizing Entercolitis (NEC). Very simply, it's a pretty dangerous complication of prematurity that effects their intestines and requires invasive surgery to repair. It normally happens around this time a couple of weeks into life when feedings are doing well. We just need to pray that this is an obstacle they won't have to overcome.
Specific Prayer
This is the part we're still a little confused on so if you're confused after reading it then you're in good company. Well, our company...but I think we're pretty fun! OK, back to business. The Aortic Coarctation that we had thought was completely gone, seems to still be a concern. She has a slight narrowing in the top part of her aorta, as well as a "shelf" near the opening of the PDA but it's not in the place that they normally see a "shelf" (it's not a contraductal shelf for those of you who know what that means). The cardiologist (Dr Chinn) came and drew us a picture to explain it for the very reason that I'm having trouble explaining it now. The point is, if they do the PDA surgery just like they did Lydia's it could cause problems with the flow of blood around that narrowing and this "shelf". If this happens, she would need the more invasive surgery to repair it, but she's not anywhere close to the right size to be able to handle that kind of surgery. The side effects include heart failure, but the side effects of leaving the PDA open at this point include heart failure too. This is when I'm very very glad that we have the best doctors and medical team possible to help guide us in this decision. Tomorrow there is a meeting of all the cardiologists and cardiovascular surgeons to discuss all the cases they are treating right now. Penelope's case will be discussed and they'll come up with the best plan of action.
In the mean time, Penny's been intubated to help her breath around the pulmonary edema. The silver lining on that is that her big 'ole CPAP apparatus is gone and we can see her pretty little face! I don't have any pictures to post right now but we'll get some a little later and post them.
Lydia is holding pretty steady. She's still seemingly unexplainably angry and throws fits often, but if I were in her situation I'd be pretty mad about it too. Today she was throwing a fit that she was having trouble calming down from so we went ahead and did kangaroo time and she calmed down immediately. That did wonders for me feeling like a mama, and for both of our stress levels!
Something we haven't mentioned before but should go ahead and start praying against is the possibility of them developing Necrotizing Entercolitis (NEC). Very simply, it's a pretty dangerous complication of prematurity that effects their intestines and requires invasive surgery to repair. It normally happens around this time a couple of weeks into life when feedings are doing well. We just need to pray that this is an obstacle they won't have to overcome.
Specific Prayer
- Penelope's pending surgery and wisdom for the doctors making that decision
- Lydia's discontent
- Penny's toleration of the ventilator
- Lydia's toleration of feed (she needs to have a stool...go ahead and pray for her poop...God knows about poop, He invented it!)
- Protection from NEC for both girls
- Praise for the Turner's result and every other miracle we've had so far!
1-10
Penelope - 830g (1 lb 13 oz) Lydia- 1160g (2 lbs 8 oz)
Good news all around for rounds this morning. Penelope's blood sugars are staying even more stable than they were on the insulin, she's going off her IV nutrition (TPN) and going to fortified breastmilk with some additional IV fluids, and she's slowly needing her CPAP less and less!
Lydia seems much more calm, although she still throws a fit occasionally. I really think she's just hungry because she was on 9cc/3hr before her surgery and she hasn't had any food in her tummy for days now! They're starting her back on feeds as soon as the orders get written so she should be a happier camper soon.
About their weights, it's a funny thing. It takes quite a bit of doing to get Penelope's CPAP off and all her dressings to get an accurate weight, so they don't do it every night. And with Lydia she was so volatile with her fits that if she was calm we didn't dare wake her up! So it doesn't get done everyday. Also, with the fluctuation of fluids and stopping feeds and starting feeds...etc...it's not at a steady climb of weight yet, but Dr Goodwin Sampson told us not to worry about that. They're doing well.
For today, we're all doing well! Praise the Lord!!! Here are a few treats for you :) All I did was step out to take a shower and missed this moment! At least Jonathan is quick with the camera.
Good news all around for rounds this morning. Penelope's blood sugars are staying even more stable than they were on the insulin, she's going off her IV nutrition (TPN) and going to fortified breastmilk with some additional IV fluids, and she's slowly needing her CPAP less and less!
Lydia seems much more calm, although she still throws a fit occasionally. I really think she's just hungry because she was on 9cc/3hr before her surgery and she hasn't had any food in her tummy for days now! They're starting her back on feeds as soon as the orders get written so she should be a happier camper soon.
About their weights, it's a funny thing. It takes quite a bit of doing to get Penelope's CPAP off and all her dressings to get an accurate weight, so they don't do it every night. And with Lydia she was so volatile with her fits that if she was calm we didn't dare wake her up! So it doesn't get done everyday. Also, with the fluctuation of fluids and stopping feeds and starting feeds...etc...it's not at a steady climb of weight yet, but Dr Goodwin Sampson told us not to worry about that. They're doing well.
For today, we're all doing well! Praise the Lord!!! Here are a few treats for you :) All I did was step out to take a shower and missed this moment! At least Jonathan is quick with the camera.
 |
| Lydia having a fit with Jonathan trying to calm her down |
 |
| Penny in a rare CPAP adjustment moment when we get a glimpse of her face (no, she doesn't have rabies) |
Yay Penny (and Lydia)
Penny's Endocrinologist decided to try taking her off her insulin today
and see how she handles it. So far she's 5 hours after her skipped dose
and she's keeping her blood sugar steady! That's my girl!!! Well, one
of them! The other one is doing a bit better tonight and is resting
quietly at the moment. Lets hope this keeps up!
1-9
Precious little Lydia had a rough night and has been having a not
so easy day. We're pretty sure that her throat is just inflamed from being
extubated and that the crying fits she's having with her hoarse little
voice are not helping to relieve the irritation. She's taking in enough
oxygen and her air exchange within her lungs sounds really good. It's
just a sad little sound she makes when she breaths and an especially sad
sound she makes when she's crying...that is if you can hear her while
she's closed up in her giraffe bed. She was given Ativan last night to
help her rest and it helped a good bit. It helped me rest too knowing
that she would be able to sleep. When she woke up she still sounded bad
but not as bad as before her rest. She has gotten 2 breathing
treatments and may be getting another one soon. they seem to be helping
a little bit too. If she has to have too many more they'll put her on
some steroids to take care of the inflammation. Dr Goodwin-Sampson also
brought in a CPAP machine just in case...she said it was to intimidate
Lydia into breathing right so she wouldn't have to be put on it....so
far it's working!
Penny is doing relatively well. She's still having de-sat episodes but the doctor says it's not at an abnormal rate. She also just finished up her second blood transfusion which should make her feel much better. Being that she can't make more blood (for a few more weeks anyway) to replace what's being taken to test blood sugars....she was starting to look a little pale. She looks better in a nice rosy pink! Penelope also has been following a pattern since she started on her insulin of having blood sugar drops at the second hour after her shot. Today the endocrinologist suggested that we skip a dose and see how she handles it. This could be the first step in weaning her from the insulin. This would be a HUGE answered prayer. And we know we have had no shortage of those!
On a non-medical note, Jonathan and I had a realization moment as we sat and ate our lunch today. Our lunch was not the not-disgusting cafeteria food. It wasn't even peanut butter and jelly. It was delicious salads from Panera brought by some precious friends. To my left there sat a bag with the extra food brought by them and an adorable bucket full of all kinds of goodies. Movies, gum, candy, popcorn, lotion, stamps, dental floss, nail polish...anything we could want! To my right were two beautiful gift bags full of adorable clothes and precious bath towels for the girls from another friend. The entire table was covered in very tangible representations of the love and support that has been poured out on us. Of course there are many other ways that people have been loving and supporting, namely through prayer. But seeing this table covered up, was a visual reminder of all of the prayers and thoughts and website checks and calls and texts and facebook messages, and meals, and offered meals, and many other ways that God is showing us His love through the hands and feet of other people. It's a very humbling thing. It's something I hope I never forget. Thank you all for being willing to come alongside us on this crazy journey. Thank you for caring for us and our daughters. Thank you most of all for your prayers that are being answered everyday with every breath that Lydia and Penelope take. Even if it does irritate their throats!
Penny is doing relatively well. She's still having de-sat episodes but the doctor says it's not at an abnormal rate. She also just finished up her second blood transfusion which should make her feel much better. Being that she can't make more blood (for a few more weeks anyway) to replace what's being taken to test blood sugars....she was starting to look a little pale. She looks better in a nice rosy pink! Penelope also has been following a pattern since she started on her insulin of having blood sugar drops at the second hour after her shot. Today the endocrinologist suggested that we skip a dose and see how she handles it. This could be the first step in weaning her from the insulin. This would be a HUGE answered prayer. And we know we have had no shortage of those!
On a non-medical note, Jonathan and I had a realization moment as we sat and ate our lunch today. Our lunch was not the not-disgusting cafeteria food. It wasn't even peanut butter and jelly. It was delicious salads from Panera brought by some precious friends. To my left there sat a bag with the extra food brought by them and an adorable bucket full of all kinds of goodies. Movies, gum, candy, popcorn, lotion, stamps, dental floss, nail polish...anything we could want! To my right were two beautiful gift bags full of adorable clothes and precious bath towels for the girls from another friend. The entire table was covered in very tangible representations of the love and support that has been poured out on us. Of course there are many other ways that people have been loving and supporting, namely through prayer. But seeing this table covered up, was a visual reminder of all of the prayers and thoughts and website checks and calls and texts and facebook messages, and meals, and offered meals, and many other ways that God is showing us His love through the hands and feet of other people. It's a very humbling thing. It's something I hope I never forget. Thank you all for being willing to come alongside us on this crazy journey. Thank you for caring for us and our daughters. Thank you most of all for your prayers that are being answered everyday with every breath that Lydia and Penelope take. Even if it does irritate their throats!
As the Dust Settles
(post by Jonathan http://jonathan-chu.blogspot.com)
(01.07.08)
(01.07.08)
Wow.
What a whirldwind this morning was. I can't believe everything that
has happened today! We woke up around 7:00am this morning to the charge
nurse coming in saying, slightly frantically, "Mom, we're moving you
now, next door to the sisters room and they are also prepping sister for
surgery." We rubbed our eyes and said... "what? Ok." and started our
day of trying to wrap our head around all that would come.
Last
night we spoke to the cardiovascular surgeon, Dr. Goldburg, who said
that she was definitely eligible for the surgery and explained to us a
bit more why he believed it would probably be best to do it tomorrow
(today.) He explained that her echo's were showing a bit of strain on
the left side of the heart from all the work that it was having to do.
He also assured us how quick the surgery would be, how
the procedure would go and that it was something that was done often.
The surgery to fix her PDA would be using either a small surgical tie
around the PDA to close it or using a small metal clamp to pinch it off.
As with all surgeries, there are risks he had to warn us of and these
are things that are hard to hear but that are a reality nonetheless.
The last thing he told us was that he was taking her name down to put
on the scheduling board, that she should feel a lot better after the
surgery and that if we needed anything just to page him, even at 2am!
We joked about paging him at 2am to ask about something dumb but we
didn't do that for the sake of him not falling asleep during Lydia's
surgery. We went to bed with the thoughts of surgery plumb fairies
dancing in our head... ok. not really. Just apnea and brady alarms going
off at Penny's bed.
That
brings us back to paragraph one. After we started pulling ourselves
out of sleepyland, trying to grasp a bit of togetherness, we threw our
things in our bags and started walking it all down the long three rooms
away. While we were moving things to the room, we began seeing all the
prep work done next door to Penny's new room. Lydia's room was being
prepped for surgery, carts, drapes, surgical tools were all out and
being sorted. Doctors and nurses in their surgical attire, darting
around for the work that was about to be done. We knew they had planned
on having it soon but we didn't realize it was going to be THAT soon!
We spoke with the anesthesiologist, again giving us the run through on
the surgery process and what the expected positive outcomes would be
along with the unexpected negatives. We've learned that in medical
world that the saying about medicine being a "practice" seems to be
true. They practice what they know and have studied with hopes that the
outcomes are the same, but sometimes there are variables. The surgery
was to last about an hour and after putting away Penny's things and
taking a moment to reflect on what was about to happen, we decided to
leave from next door because straining our ears to hear every little
thing would not be helpful for anyone.
We corralled ourselves to the cafeteria and had a bit of breakfast, chatted a bit about learning to deal with these stress inducing moments, especially if both of them have something because we tend to worry more for the first one than we do the second one, then took ourselves back upstairs to Penny's room. By the time we sat down to reply to some comments about the surgery, Dr. Goldburg was back in the room saying he was done. WOW! That was fast!! We were told that everything went smoothly and that they chose to clamp the PDA with the clip. Along with the clamp, a small incision on her left side under her arm and towards her back, will be her battle scar. They said it won't grow with her and will stay small her whole life. It's incredible, these surgeries. The whole surgical team was amazing as well as kind and we probably will be seeing them again soon since Penelope requires the same thing. All of that took place between 7am - 11:30am. We let the nurses clean things up a bit and then went in to sit with Lydia. It was strange to see her so still and not moving because she was still intubated and sedated but we sat with her, holding her little hands.
We corralled ourselves to the cafeteria and had a bit of breakfast, chatted a bit about learning to deal with these stress inducing moments, especially if both of them have something because we tend to worry more for the first one than we do the second one, then took ourselves back upstairs to Penny's room. By the time we sat down to reply to some comments about the surgery, Dr. Goldburg was back in the room saying he was done. WOW! That was fast!! We were told that everything went smoothly and that they chose to clamp the PDA with the clip. Along with the clamp, a small incision on her left side under her arm and towards her back, will be her battle scar. They said it won't grow with her and will stay small her whole life. It's incredible, these surgeries. The whole surgical team was amazing as well as kind and we probably will be seeing them again soon since Penelope requires the same thing. All of that took place between 7am - 11:30am. We let the nurses clean things up a bit and then went in to sit with Lydia. It was strange to see her so still and not moving because she was still intubated and sedated but we sat with her, holding her little hands.
As
the day continued, Penny decided that she wanted some attention of her
own and started having some A's and B's. It's still so unnerving
walking up to the bed with all the alarms sounding and seeing her just
laying there not really breathing and her color changing to more of a
purple than a pink. We've both started learning the little tricks to
help bring her out of the spells and help her remember that she needs to
breath. Her glucose numbers are starting to settle with the new
insulin and the doctors balancing the amount of sugars to give to her so
that she doesn't drop too low. That's the current issue. At around two
hours her glucose levels drop, varying from 50s to only going down to
100's. She hasn't had any massive highs yet but we spoke with an
endocrinologist yesterday that said that things might start changing
once the dosage of food she is getting starts to increase as well as the
transition to eating more like a baby rather than continuous feeding.
Her numbers might begin to spike at the times that she gets the big
push of food as if she were eating from mom. As for her PDA, the
doctors aren't seeing the physical signs that she needs to be showing
that warrant the surgery, though with all the A's and B's she has been
having, they will be monitoring her closely.
(01.08.11)
Today
was a good day of sitting with the girls and enjoying being together.
As you'll see in a pic, we're nice and close, not quite as close as
before but significantly closer than driving across Memphis. Lydia is
recovering in the twin room while in an adjoining room, Penny is being
and monitored. There is a sliding door that can be modified to swing
wide to open the two rooms up in to each other and so I've made it as
wide open as possible. It's about as large as a nice downtown flat, all
we're missing is the stove! There had been talk about me being a
violinist and so a couple of doctors and nurses had been saying that I
should bring it up to play for the girls. Well, I didn't realize it had
been set already but a number of people said that they can't wait to
hear me play on Sat. I realized that somewhere along the way someone
had set up a time for me to play and I didn't realize it! And so, this
evening a few hours before shift change, while things were nice and
calm, I played a little show for the girls, sitting in swivel chair
between the two rooms, enjoying the time that I was getting to have with
them. I'm thankful that I was set up for a time to play because it was
like medicine for my soul and my heart to share some music with my
children out in the open air for the first time. To see their stats
hold steady and calm while I played and to see them react the same way
as they did in-utero was quite amazing. I will definitely be bringing
more music to play for them as time goes along... I've got to brush up
on some pieces!
This
evening has brought some interesting changes for Lydia. Bethany and I
had gone out to dinner and around 8:30pm, we came back to find that
Lydia was extubated and all the breathing equipment changed again to her
low flow nasal canula. She looked great and was responding great which
was so encouraging for us! It was nice to see her face again without
all the tubes down her throat. We watched her for a while, intrigued by
every little twitch that she made because of the anesthetic continuing
to leave her body. We put her little bean bag nesting pillow on her and
she slept nicely and less fidgety. About two hours passed when Bethany
and I noticed that Lydia had begun to flail some. It's normal for
preemies to do this because they're nervous system isn't fully developed
and they're supposed to be still encased in fluid, they have a sense of
falling and so they flail around. We went up to her to try and comfort
her some by putting her hands on her face and head and tucking her feet
up. That did nothing. She just keep moving her mouth open and making
wheezing sounds. We figured out that she was trying to scream but
nothing was really coming out but that wheeze. For the next hour or so
she had these fits. The doctor came in and check on her about half way
through and said that it was probably irritation from extubation. She
was showing signs of pain along with the flailing so he ordered a
breathing treatment and some pain medication to try and help her rest.
He also had an x-ray done just in case that there wasn't something else
wrong that was inside. The x-ray confirmed everything was normal so we
continued to watch her attempt to scream and flail for a bit and then
as the meds began to kick in, she started to calm. It was difficult not
being able to do anything to calm her down, we tried and tried but one
of the nurses said that even though it might be trying to calm her down,
it might be also irritating her. That was hard being told that what we
were doing was probably bothering her more. We just wanted to try and
comfort her.
Things
are finally quiet with the occasional alarms from the monitors.
Bethany's asleep in the other room with Lydia while I'm in the room
with Penny. Listening to the bubble CPAP. Knowing my daughter is
breathing is comforting. It will be weird being at home with these two
with no bells ringing to let us know that their breathing has slowed
some. For now, I'll enjoy every single noise that is made.
Lights out from LeBonheur NICU.
A couple of photos from the past two days
A rare glimpse at Ms Penelope's face
Everyone getting prepped for surgery
In the middle of the process
Post surgery
Super Deluxe Condo rooms
Playing for the girls (photos by Sarah our nurse)
Enjoying some music.
Free Therapy
Lydia's surgery went off without a hitch. This team of medical professionals is amazing! Children at Lebonheur also get a little toy for every procedure they have. Because Lydia couldn't go down to pick one for herself, the nurse brought one up for her. It was a tiger! The girls were born in the year of the Tiger on the Chinese Lunar calendar. Coincidence?...yea....cool?...totally.
Ok, as I sit here after Lydia's ligation surgery....uh..."indisposed"...or as I call it "grocery shopping for the babies"...I figure it's about time for less of an update and more of some free therapy. A little blog about the feelings and less about the findings. Hopefully I don't embarrass myself, but even if I do it won't be anything new. You do always have the option of going to another site rather than reading this whole thing...so feel free to exercise that right.
As Lydia was being prepped for surgery, Jonathan and I were just next door in Penelope's temporary new room. After Penny has her surgery she'll be moved over to the twin room with her sister. Anyway, as I was sitting there I was fine! Peaceful, even excited! Then just as we were about to head downstairs for some breakfast, I had an uncontrollable wave of emotion. Maybe it was the leaving that triggered it, but I literally had to call Jonathan back in from the hall because I didn't want to blubber my way down to the cafeteria! I knew that Lydia would be fine and that the doctor's know exactly what they're doing. There wasn't any fear of something bad happening. Just emotion. This is really nothing new to me, but usually it's a feeling rather than a flood of tears.
This whole experience has been very bathed in tears. Considering the circumstances, I'm pretty sure the majority of them are warranted and even healthy. There's something to be said for releasing those stress hormones through tears, but also the fact that holding all of this in would just tear a person up. I'm grateful that I'm not afraid to cry and extremely grateful that I have a husband who's not afraid of me crying too. In fact, about half of the time he starts up before I do! Mostly when we're reading our favorite book to the girls.
A dear friend who brought us dinner one night also brought a care package that included some very thoughtful gifts and one of those was a book called "How do I love you?" Let me see if I can recall the words (didn't bring the book to the lactation room)
Of course I bawled like a baby when I read it the first time, and every time since, whenever we leave one of the girls or we tell them goodnight, we read this book and say a prayer. Usually both induce crying. Just thinking about the feeling of holding my precious girls makes me feel like a cat in a sunny sill. Thinking about how this time is hard and uncomfortable but it will make their story all the more beautiful, makes me think of the snowflakes in the winter's chill. The feeling of being a better person because I'm able to be with them and be their guiding light through life, makes me feel like the sun loving my sweet bright blue days. This of course is the reason why I don't love the line about the ancient world and the dinosaurs...because I can't relate to how the world would love the dinosaurs...other than the fact that the dinosaurs populated the world and therefore the world loved them....that's a stretch. Anyway, the point is, there are so many unexplainable ways that we love our children as parents and sometimes the only way to even get close to a description is to say something that sounds as crazy as "I love you as the sea loves the sandy shore" because I'll always be there for you. We may have to part for a short time but I will always be back. We just don't make sense apart.
Ok, I've got myself crying now....therapy session over.
Ok, as I sit here after Lydia's ligation surgery....uh..."indisposed"...or as I call it "grocery shopping for the babies"...I figure it's about time for less of an update and more of some free therapy. A little blog about the feelings and less about the findings. Hopefully I don't embarrass myself, but even if I do it won't be anything new. You do always have the option of going to another site rather than reading this whole thing...so feel free to exercise that right.
As Lydia was being prepped for surgery, Jonathan and I were just next door in Penelope's temporary new room. After Penny has her surgery she'll be moved over to the twin room with her sister. Anyway, as I was sitting there I was fine! Peaceful, even excited! Then just as we were about to head downstairs for some breakfast, I had an uncontrollable wave of emotion. Maybe it was the leaving that triggered it, but I literally had to call Jonathan back in from the hall because I didn't want to blubber my way down to the cafeteria! I knew that Lydia would be fine and that the doctor's know exactly what they're doing. There wasn't any fear of something bad happening. Just emotion. This is really nothing new to me, but usually it's a feeling rather than a flood of tears.
This whole experience has been very bathed in tears. Considering the circumstances, I'm pretty sure the majority of them are warranted and even healthy. There's something to be said for releasing those stress hormones through tears, but also the fact that holding all of this in would just tear a person up. I'm grateful that I'm not afraid to cry and extremely grateful that I have a husband who's not afraid of me crying too. In fact, about half of the time he starts up before I do! Mostly when we're reading our favorite book to the girls.
A dear friend who brought us dinner one night also brought a care package that included some very thoughtful gifts and one of those was a book called "How do I love you?" Let me see if I can recall the words (didn't bring the book to the lactation room)
How do I love you? Let me count the ways.
I love you as the sun loves the bright blue days.
I love you as the bee loves the fragrant flower
I love you as a thirsty duck loves a sudden shower
I love you as a bird loves a song to sing
I love you as the waking bear loves the smell of spring
How to I love you? Let me tell you how
I love you as the nest loves the sturdy bough
I love you as a cat loves a sunny sill
I love you as a cat loves a sunny sill
and as the dancing snowflakes love the winters chill
I love you as the sea loves the sandy shore
And as the ancient world loves the dinosaurs (but we say And as the violin loves it's notes that soar)
I love you as the wind loves it's own sweet sound
and as our friendly earth loves to spin around
I love you as the moon loves each shining star
I love all that you will be and everything you are.
Of course I bawled like a baby when I read it the first time, and every time since, whenever we leave one of the girls or we tell them goodnight, we read this book and say a prayer. Usually both induce crying. Just thinking about the feeling of holding my precious girls makes me feel like a cat in a sunny sill. Thinking about how this time is hard and uncomfortable but it will make their story all the more beautiful, makes me think of the snowflakes in the winter's chill. The feeling of being a better person because I'm able to be with them and be their guiding light through life, makes me feel like the sun loving my sweet bright blue days. This of course is the reason why I don't love the line about the ancient world and the dinosaurs...because I can't relate to how the world would love the dinosaurs...other than the fact that the dinosaurs populated the world and therefore the world loved them....that's a stretch. Anyway, the point is, there are so many unexplainable ways that we love our children as parents and sometimes the only way to even get close to a description is to say something that sounds as crazy as "I love you as the sea loves the sandy shore" because I'll always be there for you. We may have to part for a short time but I will always be back. We just don't make sense apart.
Ok, I've got myself crying now....therapy session over.
1-6
Penelope = 780 g (1 lbs 11 oz) Lydia = 1170g (2 lbs 9 oz)
Success! Kind of. We've got both girls at Lebonheur! But they're in different rooms. The reasoning is that Lydia will be having her ductul ligation surgery tomorrow and because it will be done in her room they want to reduce the risk of infection by keeping Penny in her original room until after the surgery. So, Jonathan and I are enjoying being able to walk down the hall to see our other girl rather than drive across town to do so! We'll just have to figure out which room we'll sleep in for the night. They call this twin room the "penthouse" for good reason! it's HUGE! Still has the same number of chairs and things, but we could practice our cartwheels in here if we wanted to (although it's not advisable for me for a few more weeks).
Both girls are doing well. Penelope's blood sugars are acting more stable. They did take a little dip last night about 2 hours after getting her shot, so they're watching closely to make sure it doesn't take any larger dips. We asked whether that meant that she didn't need the insulin and Dr. Goodwin-Sampson said that if her levels continue to stay stable they will start to cut back slowly on the insulin and see how she responds and maybe, just maybe, she won't be on it by the time we leave. Maybe. Today she had her arm IVs removed so the armboards were taken off too so her little hands are free!!! It's so wonderful to feel her little hands squeeze our fingers again. She seems much happier. Although a nurse that was doing something with her this morning said that Penny slapped her hand away....so we may have to employ the armboards again to protect the nurses!
Lydia has been having fewer but more severe desats which is completely normal with her HUGE ductus. Dr Goodwin Samson says its "rip roarin!" Hopefully her surgery tomorrow will correct that. Other than that she's doing wonderfully. She tolerated the transport well and is hanging out in her fancy new bed that matches Penny's. It's a really nice bed and you can look straight through the top of it so no matter which way they're turned we can see them. There's something very therapeutic about being able to see your baby.
They just told me I get to kangaroo with Penny so I'm gonna go!!!
Specific Prayers :
Love,
The Chus
Success! Kind of. We've got both girls at Lebonheur! But they're in different rooms. The reasoning is that Lydia will be having her ductul ligation surgery tomorrow and because it will be done in her room they want to reduce the risk of infection by keeping Penny in her original room until after the surgery. So, Jonathan and I are enjoying being able to walk down the hall to see our other girl rather than drive across town to do so! We'll just have to figure out which room we'll sleep in for the night. They call this twin room the "penthouse" for good reason! it's HUGE! Still has the same number of chairs and things, but we could practice our cartwheels in here if we wanted to (although it's not advisable for me for a few more weeks).
Both girls are doing well. Penelope's blood sugars are acting more stable. They did take a little dip last night about 2 hours after getting her shot, so they're watching closely to make sure it doesn't take any larger dips. We asked whether that meant that she didn't need the insulin and Dr. Goodwin-Sampson said that if her levels continue to stay stable they will start to cut back slowly on the insulin and see how she responds and maybe, just maybe, she won't be on it by the time we leave. Maybe. Today she had her arm IVs removed so the armboards were taken off too so her little hands are free!!! It's so wonderful to feel her little hands squeeze our fingers again. She seems much happier. Although a nurse that was doing something with her this morning said that Penny slapped her hand away....so we may have to employ the armboards again to protect the nurses!
Lydia has been having fewer but more severe desats which is completely normal with her HUGE ductus. Dr Goodwin Samson says its "rip roarin!" Hopefully her surgery tomorrow will correct that. Other than that she's doing wonderfully. She tolerated the transport well and is hanging out in her fancy new bed that matches Penny's. It's a really nice bed and you can look straight through the top of it so no matter which way they're turned we can see them. There's something very therapeutic about being able to see your baby.
They just told me I get to kangaroo with Penny so I'm gonna go!!!
Specific Prayers :
- Praise for the Lord's continued miracles
- Safety for Lydia's surgery tomorrow
- Stability for Penny's blood sugars
- Wisdom for the doctors
- Rest, Peace and Faith for us
Love,
The Chus
1-5
This is a day to praise the Lord for more miracles! Just this
morning a sweet friend said specifically that she was going to pray
that our girls would be reunited soon. Well she got her prayer
answered! Dr Jenkins at Methodist Germantown decided that Lydia needed
to be together with her sister and made a call to Dr Goodwin-Sampson
at Lebonheur and they made it happen! Lydia and Penny will be together
tomorrow at Lebonheur! We're very sad to be leaving Methodist
Germantown and all of the wonderful nurses and staff here, but we are
OVERJOYED to have our girls together!
Penny's blood sugars continued to be stable all day with only a few minor desats. Lydia, on the other hand, had a few major desats that had her nurse very worried! It's most likely caused by her still open ductus arteriosis but they will address that at Lebhoneur. Most likely, one or both of the girls will need a ductus ligation surgery which apparently is relatively minor when it comes to heart surgeries. I'm not sure how a heart surgery can be minor...but apparently it is.
On a more emotional note, I got an email from another friend who tends to get hymns stuck in her head. The one that was stuck for the past few days has been "Leaning on the Everlasting Arms." I was reading the e-mail as Jonathan and I drove to Lydia this evening and read the lyrics out loud. By the time I got through the first verse we were both crying. Just so grateful to have His everlasting arms to lean on. I know how much of a comfort it is to me to just put my head on Jonathan's shoulder when things are looking gloomy and they all seem a little less gloomy. As wonderful as Jonathan's arms are for me, sometimes they fall asleep and I have to move. Or sometimes they're miles and miles away. This sweet song reminds me that there are always arms that will never fall asleep and will never leave. They're always there. What a precious gift. Here are the lyrics.
Please join us in celebrating more and more of the miracles we're seeing everyday. It's such a blessing to us to share this with you.
OH! How could I forget?!?! I got to do kangaroo care with Penny today! I really didn't expect to but when we got back from having from breakfast our nurse asked if we wanted to hold her and I think my head almost popped off my head I was nodding it so hard! Our nurse was male (still is) so he had to round up some female support (to avoid any awkward exposure incidents) and they got us all set up. It was so sweet. She was a little fussy during the moving and transition time, but once she was on my chest she settled right down and her numbers got even and stayed even form the whole time. We were only able to do 30 minutes to see how she would do, but she did so well that I'm hoping we can increase the time soon! Again, what a precious gift.
Penny's blood sugars continued to be stable all day with only a few minor desats. Lydia, on the other hand, had a few major desats that had her nurse very worried! It's most likely caused by her still open ductus arteriosis but they will address that at Lebhoneur. Most likely, one or both of the girls will need a ductus ligation surgery which apparently is relatively minor when it comes to heart surgeries. I'm not sure how a heart surgery can be minor...but apparently it is.
On a more emotional note, I got an email from another friend who tends to get hymns stuck in her head. The one that was stuck for the past few days has been "Leaning on the Everlasting Arms." I was reading the e-mail as Jonathan and I drove to Lydia this evening and read the lyrics out loud. By the time I got through the first verse we were both crying. Just so grateful to have His everlasting arms to lean on. I know how much of a comfort it is to me to just put my head on Jonathan's shoulder when things are looking gloomy and they all seem a little less gloomy. As wonderful as Jonathan's arms are for me, sometimes they fall asleep and I have to move. Or sometimes they're miles and miles away. This sweet song reminds me that there are always arms that will never fall asleep and will never leave. They're always there. What a precious gift. Here are the lyrics.
- What a fellowship, what a joy divine,
Leaning on the everlasting arms;
What a blessedness, what a peace is mine,
Leaning on the everlasting arms.- Refrain:
Leaning, leaning, safe and secure from all alarms;
Leaning, leaning, leaning on the everlasting arms.
- Refrain:
- Oh, how sweet to walk in this pilgrim way,
Leaning on the everlasting arms;
Oh, how bright the path grows from day to day,
Leaning on the everlasting arms. - What have I to dread, what have I to fear,
Leaning on the everlasting arms?
I have blessed peace with my Lord so near,
Leaning on the everlasting arms.
Please join us in celebrating more and more of the miracles we're seeing everyday. It's such a blessing to us to share this with you.
OH! How could I forget?!?! I got to do kangaroo care with Penny today! I really didn't expect to but when we got back from having from breakfast our nurse asked if we wanted to hold her and I think my head almost popped off my head I was nodding it so hard! Our nurse was male (still is) so he had to round up some female support (to avoid any awkward exposure incidents) and they got us all set up. It was so sweet. She was a little fussy during the moving and transition time, but once she was on my chest she settled right down and her numbers got even and stayed even form the whole time. We were only able to do 30 minutes to see how she would do, but she did so well that I'm hoping we can increase the time soon! Again, what a precious gift.
Saturday, January 14, 2012
1-4 Photobomb
This a a
"photo bomb" that Jonathan posted and I just stole it....it takes longer
than you think to pick the perfect picture of your children!
Our living accommodations at LeBonheur. It's like sleeping on a bunk in the bus but a little more open!
Penny's Giraffe Bed (this is why it's called a giraffe bed! The lid pops straight up)
Penny right before her getting her CPAP. our first time to see her without a assisted breathing device.
Penny getting her CPAP
It was tough going back to The Pavilion not seeing Penny there.
Lydia's hand
Penny's empty bed.
the first night Bethany got to Kangaroo care with Lydia. Lydia in transport from bed to Bethany
Tears of joy for finally getting to hold one our girls for the first time.
Psalms 22:9-10
Jonathan's first time to get to hold Lydia
Sweet Penny hates that CPAP
Spunky girl keeps trying to pull it off
Kangaroo day 2
Lydia being angelic
Note the propped up elephant feet
Happy New Year with Penelope!
Lydia giving us some big eye time for the new year.
our
poor Penny is all wrapped up in so many things, it's hard to believe
there's a tiny person under all of that equipment. We love our little
Penny.
1-4
It's been requested that we put each girl's weight in each post....sooo.....
P-800g (1.7 lbs) L- 1121g (2.4 lbs)
So I think the exhaustion is setting in. We even stayed home this morning and rested longer and still have been fighting to keep our eyes open today. The best news of the day is that Penelope was switched to a lower dose, twice a day insulin shot and is doing really well on it. She's been in a healthy range of blood sugar for almost 24 hours now! Victory!! She's still on her "blue light special" light but her bilirubin counts were down so hopefully she'll be off it it soon. We should also be getting really close to being able to do kangaroo care with her which would be great for the both of us!
Lydia was started on a second round of endocin to help close her ductus. Both girls' ductuses are wide open and could end up needing a surgery to close them. The good news, and yet more proof that we are at an amazing hospital, is that this surgery can be done at the bedside! They wouldn't have to go through the stress of being taken down to the OR. This could also possibly be Lydia's ticket to Lebonheur. Although the last thing I want is for her to need surgery, maybe she just needs to come for monitoring! For now she's steadily gaining weight and doing well. Still having regular preemie "desats" but nothing out of the ordinary.
Jonathan and I are doing alright. His digestive issues have subsided and my ankles have made a reappearance. We're trying our best to rest as much as we can. It's a little more difficult for me to rest while keeping up my "grocery shopping" (pumping) schedule, but I'm learning how to balance.
Ok, specific prayer
P-800g (1.7 lbs) L- 1121g (2.4 lbs)
So I think the exhaustion is setting in. We even stayed home this morning and rested longer and still have been fighting to keep our eyes open today. The best news of the day is that Penelope was switched to a lower dose, twice a day insulin shot and is doing really well on it. She's been in a healthy range of blood sugar for almost 24 hours now! Victory!! She's still on her "blue light special" light but her bilirubin counts were down so hopefully she'll be off it it soon. We should also be getting really close to being able to do kangaroo care with her which would be great for the both of us!
Lydia was started on a second round of endocin to help close her ductus. Both girls' ductuses are wide open and could end up needing a surgery to close them. The good news, and yet more proof that we are at an amazing hospital, is that this surgery can be done at the bedside! They wouldn't have to go through the stress of being taken down to the OR. This could also possibly be Lydia's ticket to Lebonheur. Although the last thing I want is for her to need surgery, maybe she just needs to come for monitoring! For now she's steadily gaining weight and doing well. Still having regular preemie "desats" but nothing out of the ordinary.
Jonathan and I are doing alright. His digestive issues have subsided and my ankles have made a reappearance. We're trying our best to rest as much as we can. It's a little more difficult for me to rest while keeping up my "grocery shopping" (pumping) schedule, but I'm learning how to balance.
Ok, specific prayer
- Penny's blood sugar to remain stable (or just pray that the diabetes just goes away!)
- Penny's ductus to close without complication
- Lydia's ductus to close without complication
- For the girls to be able to be together one way or another
- Comfort and peace for Penelope
- Lydia to continue to do well
- Rest for Jonathan and for me
- Wisdom for the doctors and nurses
01-03 Evening Update
(from jonathan-chu.blogspot.com)
(sorry this wasn't really posted in the evening... i fell asleep before posting this!)
Our current plan of attack, is one night at home, day with Lydia, night at LeBonheur, day with Penny, back home to sleep. So far, we're surviving ok on this schedule but we're still praying that either Penny gets moved back to The Pavilion or Lydia gets moved to LeBonheur. We're praying desperately that Penny's the one that gets moved mostly because that means that she will have downgraded on the severity of her case. Whichever way this continues, we are still so deeply grateful for these two hospitals and the amazing NICU's and NICU teams that both of them have.
Update
Penny
Today, thankfully, was uneventful in the grand scheme of things. Last night with Penny was an uninterrupted, bells and whistle free evening, no bradys, no apneas, the bed didn't even get thirsty! (the Giraffe beds have a water tank for the built in humidifier and makes a loud sound when it needs to be refilled aka "thirsty"). The work that she was having done wasn't as pain inducing as the nights past, so that allowed for parents and child alike to have some decent rest. The poor little Penny, though, was quite worn out from the massive swing of amazingly high to frightening low glucose levels, so she was much quieter than any of her recent days. It was sad not hearing her little cries when the nurses would come in and rearrange things or take blood. Her little heels look like strawberries, the little needle holes from all of her blood drawings looking like the seeds. All day today was a balancing game for the attending doctor. The only fluids she was getting today was a IV bag of d10 (dextrose) and the good ole momma's milk. The IV was giving her a balanced amount of sugar to help counter the insulin shot she had been given. Her bilirubin count was high again so she had to go back on a Billibed as well as a "bluelight special." lamp above her. We also got a visit from a third cardiologist, Dr. Alpert, who concurred with the other two doctors that the road signs for a coarct were not there. They were specifically looking for an aortic shelf in part of the aorta (the descending part, i believe?!) which would look like the waist of an hour glass. They are not seeing this currently but there is still the closing of the PDA which they are concerned about. If this does not begin to work itself out and the PDA, being wide open, continues to have the diastolic runoff it will get worse and they will need to do surgery to correct it. (http://www.nlm.nih.gov/medlineplus/ency/presentations/100012_1.htm) We just made a call in to check on her and the nurse said that she had two relatively severe SAT drops (O2 levels) and her glucose levels were around the 50's. Balancing act!
Lydia
We are continuing to enjoy the time we get in Kangaroo care with Lydia. It's been amazing to get to hold one of the girls finally and it helps make this whole process really feel like we have two children! Lydia just recently has started to show certain signs that her body is being affected by her PDA still being open. (i.e. unusual bradys and O2 sat drops) We are praying that her PDA will close on it's own and that another dose of the medicine or surgery won't be necessary. If she doesn't close the PDA on her own then she might have bought herself a trip to LeBonheur because it will require the same surgery that Penny might have to have. That would be a sad but happy day because we do love the team at The Pavilion, but would love for the two of them to be together. She's continuing to take her feedings well and has been increased to 9cc's every three hours and increasing her weight nicely. Yay for eating!
It's hard to believe that we're quickly approaching the TWO WEEK mark!! We feel like it's been longer than that so far and can't imagine what it's going to feel like at the end of this process and actually bringing them home.
We hope you all have a wonderful day tomorrow(today)!
(sorry this wasn't really posted in the evening... i fell asleep before posting this!)
Our current plan of attack, is one night at home, day with Lydia, night at LeBonheur, day with Penny, back home to sleep. So far, we're surviving ok on this schedule but we're still praying that either Penny gets moved back to The Pavilion or Lydia gets moved to LeBonheur. We're praying desperately that Penny's the one that gets moved mostly because that means that she will have downgraded on the severity of her case. Whichever way this continues, we are still so deeply grateful for these two hospitals and the amazing NICU's and NICU teams that both of them have.
Update
Penny
Today, thankfully, was uneventful in the grand scheme of things. Last night with Penny was an uninterrupted, bells and whistle free evening, no bradys, no apneas, the bed didn't even get thirsty! (the Giraffe beds have a water tank for the built in humidifier and makes a loud sound when it needs to be refilled aka "thirsty"). The work that she was having done wasn't as pain inducing as the nights past, so that allowed for parents and child alike to have some decent rest. The poor little Penny, though, was quite worn out from the massive swing of amazingly high to frightening low glucose levels, so she was much quieter than any of her recent days. It was sad not hearing her little cries when the nurses would come in and rearrange things or take blood. Her little heels look like strawberries, the little needle holes from all of her blood drawings looking like the seeds. All day today was a balancing game for the attending doctor. The only fluids she was getting today was a IV bag of d10 (dextrose) and the good ole momma's milk. The IV was giving her a balanced amount of sugar to help counter the insulin shot she had been given. Her bilirubin count was high again so she had to go back on a Billibed as well as a "bluelight special." lamp above her. We also got a visit from a third cardiologist, Dr. Alpert, who concurred with the other two doctors that the road signs for a coarct were not there. They were specifically looking for an aortic shelf in part of the aorta (the descending part, i believe?!) which would look like the waist of an hour glass. They are not seeing this currently but there is still the closing of the PDA which they are concerned about. If this does not begin to work itself out and the PDA, being wide open, continues to have the diastolic runoff it will get worse and they will need to do surgery to correct it. (http://www.nlm.nih.gov/medlineplus/ency/presentations/100012_1.htm) We just made a call in to check on her and the nurse said that she had two relatively severe SAT drops (O2 levels) and her glucose levels were around the 50's. Balancing act!
Lydia
We are continuing to enjoy the time we get in Kangaroo care with Lydia. It's been amazing to get to hold one of the girls finally and it helps make this whole process really feel like we have two children! Lydia just recently has started to show certain signs that her body is being affected by her PDA still being open. (i.e. unusual bradys and O2 sat drops) We are praying that her PDA will close on it's own and that another dose of the medicine or surgery won't be necessary. If she doesn't close the PDA on her own then she might have bought herself a trip to LeBonheur because it will require the same surgery that Penny might have to have. That would be a sad but happy day because we do love the team at The Pavilion, but would love for the two of them to be together. She's continuing to take her feedings well and has been increased to 9cc's every three hours and increasing her weight nicely. Yay for eating!
It's hard to believe that we're quickly approaching the TWO WEEK mark!! We feel like it's been longer than that so far and can't imagine what it's going to feel like at the end of this process and actually bringing them home.
We hope you all have a wonderful day tomorrow(today)!
01-02 Evening Update
(from http://jonathan-chu.blogspot.com)
Bethany and I had been missing our church family so we decided to go and be a part of church this morning. It was wonderful to be together with our family, worshiping together! It was tough to be there and not with our girls so we did take off pretty quick after church was over to get to lunch with our biological family and then to Lydia first at The Pavilion.
Update
After Penny's crazy episode of high blood glucose levels on New Year's Eve, she spent the day yesterday recouping and getting rebalanced. Her numbers continued to stay around the mid 200's and finally hit the low 200's and dipped under that by the evening.
This morning while we were sitting in church, the phone vibrated. It was the hospital so I jumped up and ran out and answered it. I was the doctor and she said that they would be starting Penny on her subcutaneous (subcu) insulin shot (detemir) to get her off of the IV insulin. At least it was good news! A few hours ago, I called to check on Penny's stats and they said that her glucose levels were low, so low that the meter was now saying "too low" and so the lab work began again to see what her numbers really were. She got to a low of 21 so they cut off all of her fluids and started to give her glucose again. (go figure!) The numbers game has been and is currently being played out as she gets different levels of glucose or dextrose IV's to balance out her subcu insulin shot. She's back up to about 241 on glucose levels. Tomorrow the gamut of doctors come in again to talk about her situation and see what they can do to get her numbers stabilized. This yo yo game is wearing on all of us and we're definitely ready for her to get stable.
As for Lydia, the past few days, she's been like a stinkin little clock. Ticking away, movin those little arms around and around, steady as can be. Her food intake continues to increase (which makes for some good meconium diapers) and her weight gain continues to tip the scales, as much as a preemie can rock a scale. Our continued concerns are for her PDA to close and for there to be no complications within her gut, (NEC) esp. if she were to take on another course of indocin.
And so this is where we stand tonight. Thank you all for your prayers, comments and for your continued journeying with us down this path!
Goodnight from LeBonheur NICU - The Chus
Bethany and I had been missing our church family so we decided to go and be a part of church this morning. It was wonderful to be together with our family, worshiping together! It was tough to be there and not with our girls so we did take off pretty quick after church was over to get to lunch with our biological family and then to Lydia first at The Pavilion.
Update
After Penny's crazy episode of high blood glucose levels on New Year's Eve, she spent the day yesterday recouping and getting rebalanced. Her numbers continued to stay around the mid 200's and finally hit the low 200's and dipped under that by the evening.
This morning while we were sitting in church, the phone vibrated. It was the hospital so I jumped up and ran out and answered it. I was the doctor and she said that they would be starting Penny on her subcutaneous (subcu) insulin shot (detemir) to get her off of the IV insulin. At least it was good news! A few hours ago, I called to check on Penny's stats and they said that her glucose levels were low, so low that the meter was now saying "too low" and so the lab work began again to see what her numbers really were. She got to a low of 21 so they cut off all of her fluids and started to give her glucose again. (go figure!) The numbers game has been and is currently being played out as she gets different levels of glucose or dextrose IV's to balance out her subcu insulin shot. She's back up to about 241 on glucose levels. Tomorrow the gamut of doctors come in again to talk about her situation and see what they can do to get her numbers stabilized. This yo yo game is wearing on all of us and we're definitely ready for her to get stable.
As for Lydia, the past few days, she's been like a stinkin little clock. Ticking away, movin those little arms around and around, steady as can be. Her food intake continues to increase (which makes for some good meconium diapers) and her weight gain continues to tip the scales, as much as a preemie can rock a scale. Our continued concerns are for her PDA to close and for there to be no complications within her gut, (NEC) esp. if she were to take on another course of indocin.
And so this is where we stand tonight. Thank you all for your prayers, comments and for your continued journeying with us down this path!
Goodnight from LeBonheur NICU - The Chus
01-01 #2
It's like
the rainbow after a storm today! Dr Chin the cardiologist just came in
and told us that according to her echos and the reports, it doesn't
look like Penny has the Aortic Coarctation! Her aorta does narrow but
it is most likely because of her size and not something that will need
surgery! Miracle #867 I guess! He is still a little concerned with
her PDA not closing but she's not showing distress from it so we'll
continue to watch it with weekly echos and see where to go from there.
(insert big sigh of relief here)
Her blood sugars are going to be checked every 2 hours with the AccuCheck bedside machine rather than having the lab come up and take a vile of blood to check it every hour like we did last night. There was a lot of crying done by all the Chus present last night and not much sleep. This morning the nurse hasn't had to stick her at all because she's found that if you alcohol swab where she was pricked last time it starts to bleed again with much less pain. I love that nurse!
It is the hardest thing in my life so far to watch my baby hurting and be able to do absolutely nothing about it. It hurts in a part of my heart that has not been touched until now. This pain that love brings is the price I have to pay for the abundant joy that loving these girls has brought and will bring. The more we learn day by day about being parents, the more deeply I understand God and His love for us. While leaving Lydia at Methodist (also extremely difficult) we were walking out past/with a little family of a mom, dad, and 2 little boys. One boy was doing what all little boys do and that is run around without paying attention to who or what was around him. As we neared the parking garage, and the cars leaving it, the dad very calmly and firmly said "be careful Caleb. stay close to me Caleb". At that moment I heard God say the same thing to me (even though my name isn't Caleb). I wondered what He could mean by telling me to be careful. Then I realized that the thing that is most dangerous for us right now is despair. And the way to avoid that is to stay close to Him. Of course when He said that I had no idea that I would be faced with a very sick baby when I got to Lebonheur. But He knew. He's so good to us.
Jonathan and Penelope are both resting quietly right now and I think I'll join them soon. We'll be going to see Lydia a little later this afternoon.
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| Penelope holding Daddy's hand |
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| Penelope Anne partying it up for New Years Eve |
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| Lydia kangarooing with mama |
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