The last 5 days have been great. The girls have been doing really well. Ben, of course, held both girls this past weekend. I was able to hold Abby for the first time yesterday as well. It was wonderful. Abby is so sweet and seems to just love being held. Her sats and heart rate were great the whole time. She made the cutest little cries when she was being prepared to come out of her glass mansion. It's somewhat sad when she cried, but it's also adorable at the same time. She really does sound like a little kitten. Now that they seem more stable we should be able to hold them more often. The rule is every other day to give them time to recover in between.
The girls are both being feed and seem to be tolerating it well. They are both still on CPAP's at good oxygen levels - between room air and 30%. Abby even had a little "bath" today - mostly a sponge bath. They both desat occassionally and Natalie has a few episodes of apnea, but otherwise is doing well.
Their weight as of last night:
Abby - 848g
Natalie - 459g
Wednesday, June 20, 2007
Sunday, June 17, 2007
A Father's Day Ode to Ben
I've taken care of a number of kids over the past few years. Often, I've brought them over to play and even had them spend the night. Poor Ben was very tolerant - even when they woke us up in the middle of the night. Even so, they were always "my kids" - under my care and my responsibility. Ben always said he'd get excited when the kids were his own. He was so right.
I will never forget the look on his face when I showed him the positive sign on the little stick. He was unbelieving but ecstatically hopeful when he asked, "really?!" Ben was so excited and happy.
He was absolutely the best husband any pregnant women could ever have. He tried to do everything for me and even rubbed lotion on my feet. I once asked him what was the best part of me being pregnant. He replied, "getting to pamper you". And he really did. I've never felt so special and taken care of.
When we found out something was wrong with the girls, he was incredible. During all the hours at the hospital while I was having ultrasounds and procedures, he rarely left my side - not even to eat. At night, he would lay his hands on my belly and pray for our little girls. When I was hospitalized for the long haul (which only lasted a day), he packed his bag and moved in too. When Natalie was born, he said, "she's so small". His hands were shaking and his voice was full of love and awe. I'll never forget how he sounded.
As I've watched him with Natalie and Abigail, he is everything I knew he would be. The way he speaks to his daughters is hard to describe. His voice has more love, tenderness, softness, and joy than I can describe. I love to hear him tell them how much he loves them and how proud he is of them.
When I look at my girls, I can't wait for them to experience what a great father they have. Ben has already planned a secret tea party for their first birthdays. (I don't seem to be invited:-)) What makes me most happy is knowing that from Ben, Natalie and Abigail will learn what to look for in a partner. They will learn that real men treat their wives with respect and love. He is kind and loving, selfless and forgiving. He treats his wife like a queen and his daughters like princesses.
I know that Natalie and Abigail will love every minute they spend with their daddy. I can't wait to watch them grow up together.
I thank God for the incredible person Ben is. He is the most kind person I've ever met. It is an honor to be loved by him, and together with Natalie and Abigail, I have a family more perfect than I could have ever dreamed. I love you so much, Ben. Thank you for being who you are. Happy Father's Day:-)
I will never forget the look on his face when I showed him the positive sign on the little stick. He was unbelieving but ecstatically hopeful when he asked, "really?!" Ben was so excited and happy.
He was absolutely the best husband any pregnant women could ever have. He tried to do everything for me and even rubbed lotion on my feet. I once asked him what was the best part of me being pregnant. He replied, "getting to pamper you". And he really did. I've never felt so special and taken care of.
When we found out something was wrong with the girls, he was incredible. During all the hours at the hospital while I was having ultrasounds and procedures, he rarely left my side - not even to eat. At night, he would lay his hands on my belly and pray for our little girls. When I was hospitalized for the long haul (which only lasted a day), he packed his bag and moved in too. When Natalie was born, he said, "she's so small". His hands were shaking and his voice was full of love and awe. I'll never forget how he sounded.
As I've watched him with Natalie and Abigail, he is everything I knew he would be. The way he speaks to his daughters is hard to describe. His voice has more love, tenderness, softness, and joy than I can describe. I love to hear him tell them how much he loves them and how proud he is of them.
When I look at my girls, I can't wait for them to experience what a great father they have. Ben has already planned a secret tea party for their first birthdays. (I don't seem to be invited:-)) What makes me most happy is knowing that from Ben, Natalie and Abigail will learn what to look for in a partner. They will learn that real men treat their wives with respect and love. He is kind and loving, selfless and forgiving. He treats his wife like a queen and his daughters like princesses.
I know that Natalie and Abigail will love every minute they spend with their daddy. I can't wait to watch them grow up together.
I thank God for the incredible person Ben is. He is the most kind person I've ever met. It is an honor to be loved by him, and together with Natalie and Abigail, I have a family more perfect than I could have ever dreamed. I love you so much, Ben. Thank you for being who you are. Happy Father's Day:-)
Wow!
So yeah Johelen was right, today and yesterday were great days for me. Yesterday I got to hold Abigail for the first time. It was amazing! It's called Kangaroo Care. They basically put her against my bare chest so there skin-to-skin contact. It's supposed to help the child to bond with the parent, not to mention being a very cool thing to get to do with your child.
She's so small and light, yet so warm. She started out crying a little bit at first. Her little cries are like a baby kitten and it melts your heart. At that moment you realize, you'd do anything for her.
When the nurse placed her on my chest, I was a little nervous about holding her wrong. But I quickly figured out that it didn't really matter that much. It's hard to hold something wrong that fits into the palm of your hand. Speaking of hands, both girls need to get a manicure. Their little fingernails hurt when they scratch as they open and close their hands. Abby seemed to do very well with the kangaroo care and her heart-rate went down and her blood oxygen went up.
Natalie reacted in pretty much the same way, although she didn't tolerate it as long. She was also making a little vibrating sound, almost as if she were snoring. It was a little disconcerting at first, but then I realized she was just taking after her old man. Natalie is so small and more delicate than Abby, but she is a strong one. She kept trying to move her head and squirm around, more so than her sister. But she got some quiet time with me which was good.
All in all, it was a great Fathers Day. If I'm half the dad my Dad was to Jeff and I, I'm doing good. I can't wait to hold my girls again, to take them home, to love on them, and to give them all I can. They are so precious to me.
Happy Father's Day Ben!
Today is Ben's first Father's Day. I think it was a pretty good day for him. Yesterday he held Abby for the first time. Today, he held Natalie for the first time. I could tell you all about it, but I'll let him explain what it was really like. I'll give the facts, just the facts, ma'am.
NICU check at 9:30pm
Natalie -
Natalie is doing great. She's on about 26% O2 which is quite good. Her weight was 747g. She is having her usual desats, so they did a chest x-ray and a caffeine level just to check things. At press time, the results weren't back yet.
Abigail
Abby has done better on CPAP than on the vent! She is currently on room air - 21% O2. She is up to 921g!!! That's just over 2 lbs if anyone is checking!!! Woo hoo. I'm actually a little skeptical of this weight, however. Yesterday she was about 840ish. Don't be surprised if she's back down again tomorrow. In either case, she's doing quite well. She tolerated Ben holding her so well yesterday. In fact she seemed to love it. She heart rate lowered and her sats were up. He held her almost an hour and a half. She loves her Daddy!
The NICU made the most precious little gifts for Father's Day. Each one has their little footprints as if walking. Underneath is a poem - ""Please walk slower, Daddy", said a child so small. "I'm walking in your footsteps, and I don't want to fall."" It's absolutely precious. I'll post a picture on the picture site.
Check the picture sit in the next few days - we will be putting up new pictures and videos.
NICU check at 9:30pm
Natalie -
Natalie is doing great. She's on about 26% O2 which is quite good. Her weight was 747g. She is having her usual desats, so they did a chest x-ray and a caffeine level just to check things. At press time, the results weren't back yet.
Abigail
Abby has done better on CPAP than on the vent! She is currently on room air - 21% O2. She is up to 921g!!! That's just over 2 lbs if anyone is checking!!! Woo hoo. I'm actually a little skeptical of this weight, however. Yesterday she was about 840ish. Don't be surprised if she's back down again tomorrow. In either case, she's doing quite well. She tolerated Ben holding her so well yesterday. In fact she seemed to love it. She heart rate lowered and her sats were up. He held her almost an hour and a half. She loves her Daddy!
The NICU made the most precious little gifts for Father's Day. Each one has their little footprints as if walking. Underneath is a poem - ""Please walk slower, Daddy", said a child so small. "I'm walking in your footsteps, and I don't want to fall."" It's absolutely precious. I'll post a picture on the picture site.
Check the picture sit in the next few days - we will be putting up new pictures and videos.
Friday, June 15, 2007
Friday, Day 24
Today is their "official" 1 month birthday. I'm not sure at what point you stop counting weeks (from Tuesday to Tuesday) and start using the date (15th) of the month. If anyone knows,let me know:-)
*big sigh* Yesterday was a rough day and I was very discouraged. I arrived back at the beach Wednesday earlier afternoon. Thursday morning, I checked on the girls and they just weren't getting better. Natalie's dopamine was up to 11 mics and her gas exchange wasn't good. Abby was still yo-yoing with her sats and blood pressure. I was just so sad and discouraged. I watched the children of my family playing on the beach. They were splashing in the water and anxiously fortifying sandcastles against the rising tide. I wondered if my little girls would ever splash in the water and play on the beach. My mind was full of maybes...Maybe they will need oxygen all the time. I couldn't see them running on the beach with oxygen tanks behind them. I thought of all the trips we wanted to take them on that we couldn't because you can't fly with oxygen. It was one of my worst "catastrophisizing" episodes. Anyway, I was quite upset and decided I just needed to see my babies. My sister was leaving around 1pm to drive back to Durham to fly back, so at 12:59ish, I decided to go with her,.
Sister and I met Ben at the hospital about 6ish. We didn't have much time because of the shift change at 6:30, but we spoke with the nurse practitioner. In general, the girls are not doing as well as expected. They would have expected them to be off the vents more and be more stable in their blood pressures and breathing. Unfortunately, they don't know why they aren't. Some of the various causes have been ruled out - brain bleeds or kidney or adrenal gland malfunction. The most likely culprit is an infection - which they can't isolate. They are both on antibiotics "just in case". The one bright spot was that the NP we spoke with was shocked to hear we'd only held Natalie once and Abby not at all. She said they needed to be held more and even if they were on dopamine (at low doses) we could. So, we planned to come back after the shift change so Ben could hold Abby.
We returned to the hospital after Sister left and we had dinner. Unfortunately, things weren't so good. Abby's heart rate soared to 230 and her O2 was up and down. Holding her was out. Natalie had several episodes of dropping her sats and apnea spells where she quit breathing completely. Her dopamine was also up to 18 mics. The only good thing about the dopamine is that there aren't any real side effects. So, it wasn't the best evening. We were both exhausted and went to bed soon after we got home.
The good news is that today is a better day. My dad and Peggy were here last night and left early to go to the hospital. A message from them later said the girls were better. My mom had checked in before I did and she said the same thing. When I called the nurse said they'd had a pretty good night (obviously after we left!). Abby was off her dopamine and had been put on CPAP about 4:30am. She was doing well aside from her usual yo-yo act. Natalie was down to 4 mics of dopamine and had no further apnea issues. She's also still on the CPAP. If they continue to do well, maybe we can hold them this weekend. It would be a great Father's Day gift for Ben.
Thanks for all your concern. I'll try to make the next entry shorter!
*big sigh* Yesterday was a rough day and I was very discouraged. I arrived back at the beach Wednesday earlier afternoon. Thursday morning, I checked on the girls and they just weren't getting better. Natalie's dopamine was up to 11 mics and her gas exchange wasn't good. Abby was still yo-yoing with her sats and blood pressure. I was just so sad and discouraged. I watched the children of my family playing on the beach. They were splashing in the water and anxiously fortifying sandcastles against the rising tide. I wondered if my little girls would ever splash in the water and play on the beach. My mind was full of maybes...Maybe they will need oxygen all the time. I couldn't see them running on the beach with oxygen tanks behind them. I thought of all the trips we wanted to take them on that we couldn't because you can't fly with oxygen. It was one of my worst "catastrophisizing" episodes. Anyway, I was quite upset and decided I just needed to see my babies. My sister was leaving around 1pm to drive back to Durham to fly back, so at 12:59ish, I decided to go with her,.
Sister and I met Ben at the hospital about 6ish. We didn't have much time because of the shift change at 6:30, but we spoke with the nurse practitioner. In general, the girls are not doing as well as expected. They would have expected them to be off the vents more and be more stable in their blood pressures and breathing. Unfortunately, they don't know why they aren't. Some of the various causes have been ruled out - brain bleeds or kidney or adrenal gland malfunction. The most likely culprit is an infection - which they can't isolate. They are both on antibiotics "just in case". The one bright spot was that the NP we spoke with was shocked to hear we'd only held Natalie once and Abby not at all. She said they needed to be held more and even if they were on dopamine (at low doses) we could. So, we planned to come back after the shift change so Ben could hold Abby.
We returned to the hospital after Sister left and we had dinner. Unfortunately, things weren't so good. Abby's heart rate soared to 230 and her O2 was up and down. Holding her was out. Natalie had several episodes of dropping her sats and apnea spells where she quit breathing completely. Her dopamine was also up to 18 mics. The only good thing about the dopamine is that there aren't any real side effects. So, it wasn't the best evening. We were both exhausted and went to bed soon after we got home.
The good news is that today is a better day. My dad and Peggy were here last night and left early to go to the hospital. A message from them later said the girls were better. My mom had checked in before I did and she said the same thing. When I called the nurse said they'd had a pretty good night (obviously after we left!). Abby was off her dopamine and had been put on CPAP about 4:30am. She was doing well aside from her usual yo-yo act. Natalie was down to 4 mics of dopamine and had no further apnea issues. She's also still on the CPAP. If they continue to do well, maybe we can hold them this weekend. It would be a great Father's Day gift for Ben.
Thanks for all your concern. I'll try to make the next entry shorter!
Wednesday, June 13, 2007
still Wednesday...
Well, I am back at the beach and Ben is still at home. He saw the girls this evening and gave me a brief report.
Natalie - Nat's gases showed her O2/Co2 exchange to be less than perfect. There is talk of putting her back on the vent, but it hasn't happened yet. Honestly, this is quite expected. She's so little, she usually only lasts a few days on her own. It's been almost 3 days which is quite good for her. Her X-rays also showed "cloudy" (word used by Ben) lungs. I'm not sure if this is the same as "wet" or something different happening. I'm thinking it's the same since they are increasing her laxis to make her pee more.
Abby - Abby is about the same. They continue to try to decrease her vent setting and O2. Ben said her O2 was 25% when he was there which is great. Hopefully she will off the vent soon.
It can be really frustrating to have them go back and forth on the vent/CPAP. As the days go by and we get closer to "long-term vent use", my worry increases. I want so much for them to be healthy, normal children and I ache to think of the problems they may have. Mostly I hate to think of any pain or discomfort they might have. Please pray their lungs will strengthen and stay on the CPAP.
I checked the care page for our hospital friends - the surgery was actually today and Buddy came through it okay so far. Please continue to pray for them.
Natalie - Nat's gases showed her O2/Co2 exchange to be less than perfect. There is talk of putting her back on the vent, but it hasn't happened yet. Honestly, this is quite expected. She's so little, she usually only lasts a few days on her own. It's been almost 3 days which is quite good for her. Her X-rays also showed "cloudy" (word used by Ben) lungs. I'm not sure if this is the same as "wet" or something different happening. I'm thinking it's the same since they are increasing her laxis to make her pee more.
Abby - Abby is about the same. They continue to try to decrease her vent setting and O2. Ben said her O2 was 25% when he was there which is great. Hopefully she will off the vent soon.
It can be really frustrating to have them go back and forth on the vent/CPAP. As the days go by and we get closer to "long-term vent use", my worry increases. I want so much for them to be healthy, normal children and I ache to think of the problems they may have. Mostly I hate to think of any pain or discomfort they might have. Please pray their lungs will strengthen and stay on the CPAP.
I checked the care page for our hospital friends - the surgery was actually today and Buddy came through it okay so far. Please continue to pray for them.
Wednesday, Day 29
We saw our girls last night. We missed them while we were at the beach. They've been doing pretty well. Natalie was taken off the vent, of course, and was holding her own with the CPAP. The nurses gave the go ahead to hold her, but we decided it was best if she rested and concentrated on breathing. She usually only lasts 24-48 hours on the CPAP and we want her to stay on it as long as possible.
This morning's report: checked in at 9:18am
Natalie:
- Doing well on CPAP at about 27% O2- going on 48 hours!! Yeah Natalie!
- She did have to go back on her dopamine - she just can't stabilize her BP. This means her feeds will stop again.
- She is receiving a transfusion this morning.
- Her weight last night was 705g.
- Nat did have another LP done yesterday, just to rule out any infections.
Abigail:
While we were there last night, her heart rate and sats were squirely. This has become her MO. She's up and down, up and down. Apparently, she thinks she's a yo-yo. Her heart rate was over 200 at times, which is not preferred. Later she calmed down and had a good night. The nurse said she did the exact same thing the night before.
- Abby had a blood transfusion about midnight last night. It seemed to help her a lot.
- Her pees had been quite low the day before, but started picking up Tuesday evening. Now she is peeing well. (If you haven't already, go back a few days and read the paragraph on how the world revolves around baby pee.)
- They are increasing her fluids.
- Her BP has also been up and down, but the nurse said her MAP's (mean arterial pressure) is looking more stable. They are leaving her on about 3 mics of dopamins.
- the plan for the day is to continue to try to wean the vent settings so she can go on the CPAP as soon as possible.
I will be returning to the beach as soon as I get my mess together. Please continue to pray for strong little lungs!
ps - little Buddy (our hospital friends) is having his surgery tomorrow.
This morning's report: checked in at 9:18am
Natalie:
- Doing well on CPAP at about 27% O2- going on 48 hours!! Yeah Natalie!
- She did have to go back on her dopamine - she just can't stabilize her BP. This means her feeds will stop again.
- She is receiving a transfusion this morning.
- Her weight last night was 705g.
- Nat did have another LP done yesterday, just to rule out any infections.
Abigail:
While we were there last night, her heart rate and sats were squirely. This has become her MO. She's up and down, up and down. Apparently, she thinks she's a yo-yo. Her heart rate was over 200 at times, which is not preferred. Later she calmed down and had a good night. The nurse said she did the exact same thing the night before.
- Abby had a blood transfusion about midnight last night. It seemed to help her a lot.
- Her pees had been quite low the day before, but started picking up Tuesday evening. Now she is peeing well. (If you haven't already, go back a few days and read the paragraph on how the world revolves around baby pee.)
- They are increasing her fluids.
- Her BP has also been up and down, but the nurse said her MAP's (mean arterial pressure) is looking more stable. They are leaving her on about 3 mics of dopamins.
- the plan for the day is to continue to try to wean the vent settings so she can go on the CPAP as soon as possible.
I will be returning to the beach as soon as I get my mess together. Please continue to pray for strong little lungs!
ps - little Buddy (our hospital friends) is having his surgery tomorrow.
Tuesday, June 12, 2007
4 weeks today!!
Okay - so we've been bad about the updates - we know. We've been beach bums! We had a lovely time at the beach, and I will be returning late tonight or tomorrow. Poor Ben has to work:-(
While at the beach, my incredible family threw a surprise baby shower for me - complete with games, decorations and gifts! They also had the most beautiful baby cake I've ever seen - I'll post a picture on the picture site. It was brought all the way from Georgia by my cousin Amye - organizer extradanaire! It was so wonderful and many thanks to my wonderful family!!
Now to the updates...
Abby
Abby is doing quite well. They have taken her off the rapid vent and put her back on the regular vent. Her settings are about 30ish % which is great. She's still on a little dopamine. She had a good night and we are hopeful for a good day and continued success on the vent.
Natalie
Natalie is a big girl now! She has been taken off her vent and put on the CPAP. (I'll define that for everyone later.) She is off her dopamine and probably starting feeds again today. I think her CPAP O2 levels are between 30-40%. She's bigger now than the last time she tried the CPAP so hopefully she can hold out and continue to breathe on her own.
We will be at the hospital later, so look for another update tonight.
One more thing...we have met a family at the hospital who has a little boy in the PICU. They are from Burlington/Caswell County - my dad's old stomping grounds. I've mentioned them in passing before. Their little boy was born with a combination of problems, including one one malfunctioning kidney and a heart issue. The kidney is doing better and he will be having risky heart surgery today or tomorrow. Please keep Buddy and his parents in your prayers.
While at the beach, my incredible family threw a surprise baby shower for me - complete with games, decorations and gifts! They also had the most beautiful baby cake I've ever seen - I'll post a picture on the picture site. It was brought all the way from Georgia by my cousin Amye - organizer extradanaire! It was so wonderful and many thanks to my wonderful family!!
Now to the updates...
Abby
Abby is doing quite well. They have taken her off the rapid vent and put her back on the regular vent. Her settings are about 30ish % which is great. She's still on a little dopamine. She had a good night and we are hopeful for a good day and continued success on the vent.
Natalie
Natalie is a big girl now! She has been taken off her vent and put on the CPAP. (I'll define that for everyone later.) She is off her dopamine and probably starting feeds again today. I think her CPAP O2 levels are between 30-40%. She's bigger now than the last time she tried the CPAP so hopefully she can hold out and continue to breathe on her own.
We will be at the hospital later, so look for another update tonight.
One more thing...we have met a family at the hospital who has a little boy in the PICU. They are from Burlington/Caswell County - my dad's old stomping grounds. I've mentioned them in passing before. Their little boy was born with a combination of problems, including one one malfunctioning kidney and a heart issue. The kidney is doing better and he will be having risky heart surgery today or tomorrow. Please keep Buddy and his parents in your prayers.
Saturday, June 9, 2007
Saturday, Day 25
Checked in with the NICU at 10:45pm...
Abigail
vent settings - O2 - up and down - currently 48%
Good gas at 10pm
Dopamine - at 3 mics - keeping to help with peeing output
Morophine at 20mics
weight - 906g (nurse says not to put too much stock in this weight - it is likely lower - it's hard to lift the hoses enough to get an accurate reading) But she is gaining something, so that's good.
Abby also received another dose of serphatan today. Her lungs x-rays continue to show improvement.
Natalie -
back on dopamine - 5 mics - blood pressure went down earlier in the day so they had to restart it - that also means the feeds must stop
weight 771g
O2 - currently at 28%
Well, I'm writing from the beach right now. We are here with Jo's family - lots of family - about 24 people - maybe more - I lost count. We will be back Monday night, then Jo may return on Wednesday. It will be hard not seeing our girls for 2 whole days!!! We did see them earlier today. I actually went twice - once with Nana, Mema, Uncle Wayne, and Aunt Joyce. Then again with Aunt Kimmy, Aunt Jessie and Ben. Grandpa stopped by as well. Poppy was down from VA again Friday night and early this morning. Nanny and Auntie Loren from CA also drove down on Friday. The weekend has been quite busy, so they are probably glad to have a break.
Today we spoke with the nurse practitioner about the possible ramifications of being on the vent too long. "Too long" is defined as 4-6 weeks. The main concern is chronic lung disease which can be anything from asthma to needing a trach to breathe. There is also the possibly of brain damage since the pressure of the vents increases the overall pressure in the body - including the brain. Abby has actually been off the vent more than Natalie, but on the vent straight for about 2 weeks. Natalie was on and off and on and off, but has probably been on it at least as long as Abby. So, the sooner they are off the vents the better. There is a possibility that they will try Nat off the vent in the next day or two.
It's very scary to hear all the things that can go wrong. I try to imagine one or both of my girls on oxygen or with a trach for the rest of their lives, and it breaks my heart. Of course, with chronic lung disease comes a severe sensitivity to colds which can turn into pnuenomia or worse. Those illnesses could be deadly for someone who can barely breathe in the first place.
It's awful to think about the may-be's, so honestly, we operate in a calming state of semi-denial. We assume everything will be okay - until someone tells us otherwise. Otherwise, we'll drive ourselves crazy with worry.
We continue to pray and are, as always, so thankful for your continued prayers.
Abigail
vent settings - O2 - up and down - currently 48%
Good gas at 10pm
Dopamine - at 3 mics - keeping to help with peeing output
Morophine at 20mics
weight - 906g (nurse says not to put too much stock in this weight - it is likely lower - it's hard to lift the hoses enough to get an accurate reading) But she is gaining something, so that's good.
Abby also received another dose of serphatan today. Her lungs x-rays continue to show improvement.
Natalie -
back on dopamine - 5 mics - blood pressure went down earlier in the day so they had to restart it - that also means the feeds must stop
weight 771g
O2 - currently at 28%
Well, I'm writing from the beach right now. We are here with Jo's family - lots of family - about 24 people - maybe more - I lost count. We will be back Monday night, then Jo may return on Wednesday. It will be hard not seeing our girls for 2 whole days!!! We did see them earlier today. I actually went twice - once with Nana, Mema, Uncle Wayne, and Aunt Joyce. Then again with Aunt Kimmy, Aunt Jessie and Ben. Grandpa stopped by as well. Poppy was down from VA again Friday night and early this morning. Nanny and Auntie Loren from CA also drove down on Friday. The weekend has been quite busy, so they are probably glad to have a break.
Today we spoke with the nurse practitioner about the possible ramifications of being on the vent too long. "Too long" is defined as 4-6 weeks. The main concern is chronic lung disease which can be anything from asthma to needing a trach to breathe. There is also the possibly of brain damage since the pressure of the vents increases the overall pressure in the body - including the brain. Abby has actually been off the vent more than Natalie, but on the vent straight for about 2 weeks. Natalie was on and off and on and off, but has probably been on it at least as long as Abby. So, the sooner they are off the vents the better. There is a possibility that they will try Nat off the vent in the next day or two.
It's very scary to hear all the things that can go wrong. I try to imagine one or both of my girls on oxygen or with a trach for the rest of their lives, and it breaks my heart. Of course, with chronic lung disease comes a severe sensitivity to colds which can turn into pnuenomia or worse. Those illnesses could be deadly for someone who can barely breathe in the first place.
It's awful to think about the may-be's, so honestly, we operate in a calming state of semi-denial. We assume everything will be okay - until someone tells us otherwise. Otherwise, we'll drive ourselves crazy with worry.
We continue to pray and are, as always, so thankful for your continued prayers.
Friday, June 8, 2007
If we were boys...
Since I shared the stories behind the girls' names, I thought I'd share who they would have been had they been boys. I know I'm always interested in what might have been - especially when I was pregnant since I was always on the hunt for good names.
So, if they'd been boys...
We actually had quite a debate. I was desperate for a little boy named Walker. Of course it's my maiden name, and when I babysat for a little boy named Walker I fell in love with the name (and the boy!). However, Ben was less than enthusiastic. He finally agreed that if we had a second boy at any time, he could be Walker. So, when we found out we were having twins, I thought I might get my Walker after all.
But we had to pick a first boy name first. We settled on Joshua. Actually, it was pretty much the only name we both liked. The middle name was easy - as with a girl, we were using sibling's names. So, thanks to Ben's brother, we had Joshua Jeffrey. Since the two boys was a possibility, we needed a middle name for Walker. As with the girls, we wanted something with meaning. After much consideration, we settled on Walker Rickman. Okay, it sounds a little weird, but Rickman is the maiden name of my great-grandmother, Pallie Rickman Winstead, my mema's mother. The Rickman's are from the mountains of Franklin, NC, where my mom and mema now live. Every August there is a Rickman family reunion. I've attended these reunions off and on my whole life. The Rickmans are a very special family. They've lived on the mountain for generations and are loving, God-centered and family oriented and being apart of their family is an honor for me. Bearing the Rickman name would have been a badge of honor.
So, Joshua Jeffrey and Walker Rickman it would have been. If we ever have another child and it's a boy, I will fight once again for Walker, only then it would be Walker Jeffrey. And once again, I'll probably lose:-)
Have a great day everyone!
So, if they'd been boys...
We actually had quite a debate. I was desperate for a little boy named Walker. Of course it's my maiden name, and when I babysat for a little boy named Walker I fell in love with the name (and the boy!). However, Ben was less than enthusiastic. He finally agreed that if we had a second boy at any time, he could be Walker. So, when we found out we were having twins, I thought I might get my Walker after all.
But we had to pick a first boy name first. We settled on Joshua. Actually, it was pretty much the only name we both liked. The middle name was easy - as with a girl, we were using sibling's names. So, thanks to Ben's brother, we had Joshua Jeffrey. Since the two boys was a possibility, we needed a middle name for Walker. As with the girls, we wanted something with meaning. After much consideration, we settled on Walker Rickman. Okay, it sounds a little weird, but Rickman is the maiden name of my great-grandmother, Pallie Rickman Winstead, my mema's mother. The Rickman's are from the mountains of Franklin, NC, where my mom and mema now live. Every August there is a Rickman family reunion. I've attended these reunions off and on my whole life. The Rickmans are a very special family. They've lived on the mountain for generations and are loving, God-centered and family oriented and being apart of their family is an honor for me. Bearing the Rickman name would have been a badge of honor.
So, Joshua Jeffrey and Walker Rickman it would have been. If we ever have another child and it's a boy, I will fight once again for Walker, only then it would be Walker Jeffrey. And once again, I'll probably lose:-)
Have a great day everyone!
Friday, Day 24
This is actually a report from Thursday - it just happens to be after midnight. The news is good.
Natalie
Little Natalie continues to do well. She is still off her dopamine. Her lungs looked a little expanded on her chest x-ray which only means she doesn't need as much pressure on her vent. So, they turned it down. Because of it though, they decided to rest her another day before starting her feeds. She is still having episodes of desating, but generally is doing well.
Abigail
Abby has had us worried - even me, and I'm not really a worrier. I prayed and prayed last night (Wednesday night) that God would touch and heal her little lungs and blow into them His breath of healing. I know so many other people are praying too, and He must have heard, because she's doing better.
Instead of the steroids, they decided to give her serphatan (I think this is naturally produced in the lungs, but her was assumed low). She then began doing much better. Her oxygen has been between 25% - 40% which is a significant improvement. Her chest x-ray looked better than it had in weeks. She's also peeing well.
We are so grateful for this improvement. Keep on praying!
Natalie
Little Natalie continues to do well. She is still off her dopamine. Her lungs looked a little expanded on her chest x-ray which only means she doesn't need as much pressure on her vent. So, they turned it down. Because of it though, they decided to rest her another day before starting her feeds. She is still having episodes of desating, but generally is doing well.
Abigail
Abby has had us worried - even me, and I'm not really a worrier. I prayed and prayed last night (Wednesday night) that God would touch and heal her little lungs and blow into them His breath of healing. I know so many other people are praying too, and He must have heard, because she's doing better.
Instead of the steroids, they decided to give her serphatan (I think this is naturally produced in the lungs, but her was assumed low). She then began doing much better. Her oxygen has been between 25% - 40% which is a significant improvement. Her chest x-ray looked better than it had in weeks. She's also peeing well.
We are so grateful for this improvement. Keep on praying!
Wednesday, June 6, 2007
What's In a Name?
I though you might be interested in how the girls came by their names.
We trying to decide on names while I was pregnant, we decided that we would use our siblings names as middle names. When we found out we were having twins, we had to think harder, especially if we had same sex twins. First names were always a challenge.
After much discussing, internet searches, haggling and rejection, we settled on Abigail and Natalie as potential first names. There was nothing special about them, we just liked them. Abigail was our favorite and first choice. We actually waffled on Natalie quite a bit, mostly because it was more difficult to "cutify". In other words, it didn't have great nicknames. Nat is okay, but not as cute as Abby. But in the end, we decided we liked it (and we ran out of time to debate anything else!!!)
Their middle names are where the stories are. Kimberly is Jo's sister's name. It's also a beautiful name, and not too common now days. Mostly we wanted to honor our siblings. Elianna is the name of a special little friend of Johelen's who she started babysitting when Elianna was about 2 1/2. Actually, Kimberly started babysitting for her older brothers a few months before Elianna was even born. When Kimberly moved away, Jo began babysitting for the family. Elianna was Jo's flower girl at our wedding and has always been very special. We have had sleepovers, special time, and a few years ago we started a NC Fair tradition. Jo has attended school events, cheerleading competitions, ballet recitals, and birthday parties. In fact, Thursday night, Jo will attend Elianna's graduation from her elementary school. This November, she will be 11 years old! It has been nearly a decade of special time, events, and lots of love. We also thought Elianna was simply a beautiful name and very unusual. Elianna has been a dear about the babies. For years she would ask me when I was having a baby. She started giving me lists of potential names years ago. She was one of the first people I told I was pregnant, and she offered even more names - every time I spoke to her! She also started knitting a hat for the baby. She even purchased a gift for them with her very own money - adorable socks that are made to look like Mary Jane shoes. She is such a sweetheart and has brought so much joy and happiness to me. We are honored to have one of the girls share her name.
The combination of the names was mostly a matter of what sounded best together. Natalie Kimberly was chosen as the name for whoever came out first (to honor Sister). Abigail Elianna would be her sister.
So - that's the story of how the girls got their names. Now you know...
We trying to decide on names while I was pregnant, we decided that we would use our siblings names as middle names. When we found out we were having twins, we had to think harder, especially if we had same sex twins. First names were always a challenge.
After much discussing, internet searches, haggling and rejection, we settled on Abigail and Natalie as potential first names. There was nothing special about them, we just liked them. Abigail was our favorite and first choice. We actually waffled on Natalie quite a bit, mostly because it was more difficult to "cutify". In other words, it didn't have great nicknames. Nat is okay, but not as cute as Abby. But in the end, we decided we liked it (and we ran out of time to debate anything else!!!)
Their middle names are where the stories are. Kimberly is Jo's sister's name. It's also a beautiful name, and not too common now days. Mostly we wanted to honor our siblings. Elianna is the name of a special little friend of Johelen's who she started babysitting when Elianna was about 2 1/2. Actually, Kimberly started babysitting for her older brothers a few months before Elianna was even born. When Kimberly moved away, Jo began babysitting for the family. Elianna was Jo's flower girl at our wedding and has always been very special. We have had sleepovers, special time, and a few years ago we started a NC Fair tradition. Jo has attended school events, cheerleading competitions, ballet recitals, and birthday parties. In fact, Thursday night, Jo will attend Elianna's graduation from her elementary school. This November, she will be 11 years old! It has been nearly a decade of special time, events, and lots of love. We also thought Elianna was simply a beautiful name and very unusual. Elianna has been a dear about the babies. For years she would ask me when I was having a baby. She started giving me lists of potential names years ago. She was one of the first people I told I was pregnant, and she offered even more names - every time I spoke to her! She also started knitting a hat for the baby. She even purchased a gift for them with her very own money - adorable socks that are made to look like Mary Jane shoes. She is such a sweetheart and has brought so much joy and happiness to me. We are honored to have one of the girls share her name.
The combination of the names was mostly a matter of what sounded best together. Natalie Kimberly was chosen as the name for whoever came out first (to honor Sister). Abigail Elianna would be her sister.
So - that's the story of how the girls got their names. Now you know...
Special prayers for little lungs
Well, Abby continues to struggle with her breathing and vent. She is on the rapid-breathing vent which is more gentle on her lungs. But she still is needing oxygen support between 50% and 70%. This is much higher than we'd like to see. Her lungs are still quite wet and she doesn't seem to be able to pee enough to get rid of the fluid. Today the doctor spoke to us about putting her on a round of anti-inflammatory steroids to help the assumed inflammation in her lungs. It would be a minimum dose for 2-3 weeks. There are potential side effects. Some studies (although with higher doses for a longer period of time) showed increased risk of developing Cerebral Palsy and other neurological issues. On the other hand, remaining on a vent for so long also has effects. It can cause long term lung damage leading to chronic lung disease or respiratory issues. Plus, needing such high levels of oxygen support can affect her eyesight.
It's a rock and a hard place. The doctor we spoke to believes the steroids are the best course for now. He was going to consult again with the other attendings to make a final decision. If they go with the steroids, we should see results in 48 hours. We should know more tomorrow.
On the other hand, Natalie is doing quite well. Her vents setting are low - mostly between 23% and 30%. She is completely off her dopamine and we are hoping they can begin feeds tomorrow. She is doing well and we've been telling her to send her sister vibes to get better.
We will likely call the NICU later tonight, and may post again late tonight. If not, look for an update tomorrow.
Please pray for God to heal Abby's little lungs, and give praise that Natalie is doing well.
It's a rock and a hard place. The doctor we spoke to believes the steroids are the best course for now. He was going to consult again with the other attendings to make a final decision. If they go with the steroids, we should see results in 48 hours. We should know more tomorrow.
On the other hand, Natalie is doing quite well. Her vents setting are low - mostly between 23% and 30%. She is completely off her dopamine and we are hoping they can begin feeds tomorrow. She is doing well and we've been telling her to send her sister vibes to get better.
We will likely call the NICU later tonight, and may post again late tonight. If not, look for an update tomorrow.
Please pray for God to heal Abby's little lungs, and give praise that Natalie is doing well.
Tuesday, June 5, 2007
Happy 3 Week Birthday
Today is the girls' 3 week birthday. Seems like yesterday...seems like forever. Here are today's reports:
Abigail:
Abby continues to have lung and breathing issues. She was up on her oxygen, at one point 100%, so they switched her to the rapid breathing vent which does less damage to the lungs. The vent rates have fluctuated all day. At 9:30pm, they were about 70%. Her lungs continue to appear wet and she just can't seem to get rid of the fluid in them. Her platelets were low earlier today as well so she received a blood transfusion. The blood seemed to help her blood pressure a bit so they were able to bring down the dopamine a little bit. They continue to monitor her blood gases to check the O2 level and the CO2 exchange. She did come off two of her three antibiotics and will come off the other tomorrow.
Natalie:
Natalie was off her dopamine about 24 hours and received several feedings. But, her BP dropped again and she had to go back on it. While on dopamine, feeding stop. The nurses explained that if the BP is low, then it means that al the organs and tissues are not receiving an adequate amount of blood (profusing). It make sit difficult for the stomach to digest the milk and can cause problems. So, the mil continues to pile up in my freezer and we wait for them to be feed again. Natalie came of her two antibiotics today as well. Other than her BP, she is doing pretty well.
Today was a harder day as it is hard to see them lying there so little and be unable to do anything to help them. Even touching them causes a moral conflict. They are both so sensitive to touch it generally cause them to desat and get agitated. So, do we risk making them worse, or do we lay our hands on them so they will know their mommy and daddy are there and loving them? Do they need the rest, or do they need the bonding of their mom and dad? It is such a helpless feeling to be able to do nothing that can help. Ben told me I know know how men feel when something is wrong and they can't fix it. I told him it really sucks to be a guy. It's also very hard to be a mommy without any children.
A word about milk: Since my children aren't eating, and when they are it's literally droplets at a time, the milk is piling up. My freezer is now full, and we'd started on the fridge. We are considering purchasing a freezer, but until then, if any nearby friends and family have unused freezer space you'd like to offer, we'd be very grateful. At 4 bottles a pumping and at least 5 pumping a day - you can see our dileama. Soon, we will be overrun...
ps - I posted a few more pictures yesterday. Be sure to check them out.
Abigail:
Abby continues to have lung and breathing issues. She was up on her oxygen, at one point 100%, so they switched her to the rapid breathing vent which does less damage to the lungs. The vent rates have fluctuated all day. At 9:30pm, they were about 70%. Her lungs continue to appear wet and she just can't seem to get rid of the fluid in them. Her platelets were low earlier today as well so she received a blood transfusion. The blood seemed to help her blood pressure a bit so they were able to bring down the dopamine a little bit. They continue to monitor her blood gases to check the O2 level and the CO2 exchange. She did come off two of her three antibiotics and will come off the other tomorrow.
Natalie:
Natalie was off her dopamine about 24 hours and received several feedings. But, her BP dropped again and she had to go back on it. While on dopamine, feeding stop. The nurses explained that if the BP is low, then it means that al the organs and tissues are not receiving an adequate amount of blood (profusing). It make sit difficult for the stomach to digest the milk and can cause problems. So, the mil continues to pile up in my freezer and we wait for them to be feed again. Natalie came of her two antibiotics today as well. Other than her BP, she is doing pretty well.
Today was a harder day as it is hard to see them lying there so little and be unable to do anything to help them. Even touching them causes a moral conflict. They are both so sensitive to touch it generally cause them to desat and get agitated. So, do we risk making them worse, or do we lay our hands on them so they will know their mommy and daddy are there and loving them? Do they need the rest, or do they need the bonding of their mom and dad? It is such a helpless feeling to be able to do nothing that can help. Ben told me I know know how men feel when something is wrong and they can't fix it. I told him it really sucks to be a guy. It's also very hard to be a mommy without any children.
A word about milk: Since my children aren't eating, and when they are it's literally droplets at a time, the milk is piling up. My freezer is now full, and we'd started on the fridge. We are considering purchasing a freezer, but until then, if any nearby friends and family have unused freezer space you'd like to offer, we'd be very grateful. At 4 bottles a pumping and at least 5 pumping a day - you can see our dileama. Soon, we will be overrun...
ps - I posted a few more pictures yesterday. Be sure to check them out.
Sunday, June 3, 2007
Sunday - Day 19
The girls are holding pretty steady. They enjoyed a nice visit from one of Mommy's oldest friends, Amy. Oldest as in known since 10th grade - not oldest in age!
Abigail:
Abby continues to keep the nurses busy by being fickle with her sats. Her heart rate and blood ox go up and down, up and down. She's also still on the dopamine although at a minimum amount. An x-ray earlier today showed her lungs to still be wet so a blood gas was drawn about 6pm to check it.
Natalie:
Natalie is the good girl today. She's been relatively quiet today. She is also still on dopamine.
Thanks to Paula and Tamara who brought dinner for us last week. It was yummy!! We are so grateful to all for everything.
Abigail:
Abby continues to keep the nurses busy by being fickle with her sats. Her heart rate and blood ox go up and down, up and down. She's also still on the dopamine although at a minimum amount. An x-ray earlier today showed her lungs to still be wet so a blood gas was drawn about 6pm to check it.
Natalie:
Natalie is the good girl today. She's been relatively quiet today. She is also still on dopamine.
Thanks to Paula and Tamara who brought dinner for us last week. It was yummy!! We are so grateful to all for everything.
Saturday, June 2, 2007
PS
I just noticed that the entries I transfered from the care page are cut off mid sentence. If you are just joining us and need the whole story visit www.carepages.com and register. The site name is NatalieandAbigail. You can read everything there, then pick up back on this site.
10:30 pm - NICU check in
The latest check is good.
Abby weighed in at 851g - woo hoo - she's now back above her birth weight and gained 2 oz since yesterday! I think she was worried Natalie was catching up. She has been having a few desat's (drops in oxygen levels or heart rate) so they've been playing with her vent rates to find what will make her happy. Her sodium level was a little low as well, so they are given her sodium. I'm not sure I mentioned before, but she also had a blood transfusion earlier today as well. But in general, she's fine.
Natalie - Nat didn't gain much - she's now at 658g, but she's still above her birth weight. Her oxygen rate is down at 21% - room air (the lowest setting) so that's great. She's resting well and doing great.
A word about baby pee: Never in my life did I think baby pee would become so important. However, the recent drama of the last month has taught me more about baby pee than I ever wanted to know. In the beginning, we learned that amniotic fluid is entirely baby pee. With the Twin to Twin Transfusion Syndrome, life became all about how much or how little pee each baby had. Now that they are born, their little diapers are carefully weighed to determine exactly how much they pee. Tests are done to determine all sorts of peeing related conditions. If the electrolytes are low, it means they are peeing too much. If their lungs are "wet" it means they have fluid on them and they aren't peeing enough. If the sodium is low, it could mean they peed too much. For each problem, there is a solution to counteract the condition in hopes of causing the correct amount of baby pee. Of course, sometimes there is the problem of over-correcting and then the cycle starts again. Who knew that baby pee rules the world??
Abby weighed in at 851g - woo hoo - she's now back above her birth weight and gained 2 oz since yesterday! I think she was worried Natalie was catching up. She has been having a few desat's (drops in oxygen levels or heart rate) so they've been playing with her vent rates to find what will make her happy. Her sodium level was a little low as well, so they are given her sodium. I'm not sure I mentioned before, but she also had a blood transfusion earlier today as well. But in general, she's fine.
Natalie - Nat didn't gain much - she's now at 658g, but she's still above her birth weight. Her oxygen rate is down at 21% - room air (the lowest setting) so that's great. She's resting well and doing great.
A word about baby pee: Never in my life did I think baby pee would become so important. However, the recent drama of the last month has taught me more about baby pee than I ever wanted to know. In the beginning, we learned that amniotic fluid is entirely baby pee. With the Twin to Twin Transfusion Syndrome, life became all about how much or how little pee each baby had. Now that they are born, their little diapers are carefully weighed to determine exactly how much they pee. Tests are done to determine all sorts of peeing related conditions. If the electrolytes are low, it means they are peeing too much. If their lungs are "wet" it means they have fluid on them and they aren't peeing enough. If the sodium is low, it could mean they peed too much. For each problem, there is a solution to counteract the condition in hopes of causing the correct amount of baby pee. Of course, sometimes there is the problem of over-correcting and then the cycle starts again. Who knew that baby pee rules the world??
Who's Who in Natalie and Abigail's world
Many of you are close friends and family members, but some of you may not know all the characters (and I do mean characters!) in our family. I thought a little Who's Who was in order. This would be better if I could put pictures next to the names, but you'll just have to refer to the pictures on the picture page.
The Cast:
Mommy and Daddy aka Johelen and Ben
married 6 years this August 26
Mommy - former nanny, stay at home mom
Daddy - computer programmer
Natalie and Abigail - 1st children
Nana and Mema aka Brenda and Daphne
Jo's mom and grandmother - Franklin, NC
1st grandchildren/great-grandchildren
Poppy and Nanny aka Eddie and Peggy
Jo's dad and step-mom - Luray, VA
1st grandchildren
Grandma and Grandpa aka Doy and Richard
Ben's mom and dad - Goldsboro, NC
1st grandchildren
Grandma C aka Wilda
Ben's grandmother - Caro, MI
two of many great-grandchildren
Aunt Kimmy aka Kimberly or Sister
Jo's sister - Brooklyn, NY
girls' personal dresser and stylist
Uncle Jeffie and Aunt Reagan aka Jeff and Reagan
Ben's brother and his darling wife - Cary, NC
Reagan - cook extraordinaire
Aunt Jan aka Jan
Ben's sister - FL
Others:
Aunt Loren - Jo's step-sister - CA
Aunt Jessica - Jo's "other" special little sister - Kimberly's best friend since childhood - VA
There are also a host of great aunts and uncles, but we don't have all day! Maybe I'll try to clarify those on the actual pictures!
Hope this helps everyone keep track of everyone!
The Cast:
Mommy and Daddy aka Johelen and Ben
married 6 years this August 26
Mommy - former nanny, stay at home mom
Daddy - computer programmer
Natalie and Abigail - 1st children
Nana and Mema aka Brenda and Daphne
Jo's mom and grandmother - Franklin, NC
1st grandchildren/great-grandchildren
Poppy and Nanny aka Eddie and Peggy
Jo's dad and step-mom - Luray, VA
1st grandchildren
Grandma and Grandpa aka Doy and Richard
Ben's mom and dad - Goldsboro, NC
1st grandchildren
Grandma C aka Wilda
Ben's grandmother - Caro, MI
two of many great-grandchildren
Aunt Kimmy aka Kimberly or Sister
Jo's sister - Brooklyn, NY
girls' personal dresser and stylist
Uncle Jeffie and Aunt Reagan aka Jeff and Reagan
Ben's brother and his darling wife - Cary, NC
Reagan - cook extraordinaire
Aunt Jan aka Jan
Ben's sister - FL
Others:
Aunt Loren - Jo's step-sister - CA
Aunt Jessica - Jo's "other" special little sister - Kimberly's best friend since childhood - VA
There are also a host of great aunts and uncles, but we don't have all day! Maybe I'll try to clarify those on the actual pictures!
Hope this helps everyone keep track of everyone!
June 2, 2007 - Day 18
The last few days have been quiet. The girls are doing quite well. Over the past few days they have had several tests and all have turned out well. They had EEG's to measure brain activity and look for seizures. This was the one I was a little worried about - especially with Natalie - but they looked perfect. Follow-up EKG's (electrocardiograms) on their hearts showed that Natalie PDA had closed again and Abigail's was still closed. The only results that are a little off are the belly X-rays. Their belly's do not show infection, but they aren't quite normal either. It's nothing really to worry about though. The one wrinkle today has been that they both have dropped their blood pressures a little and are back on minimal doses of dopamine. All in all, they are doing fine and this weekend is far superior than last weekend.
Natalie and Abigail were quite pleased to see their Poppy and Nanny again this weekend. Next weekend will also be full of visitors. We are expecting Nana and Mema, Aunt Loren, Nanny, and Poppy, Aunt Kimmy, special Aunt Jessica, cousin Mary Beth and maybe even Grandpa and Grandma. We can't wait!!
Natalie and Abigail were quite pleased to see their Poppy and Nanny again this weekend. Next weekend will also be full of visitors. We are expecting Nana and Mema, Aunt Loren, Nanny, and Poppy, Aunt Kimmy, special Aunt Jessica, cousin Mary Beth and maybe even Grandpa and Grandma. We can't wait!!
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