It's like a weird cosmic joke. I suddenly find myself surrounded by 1. Twins. I swear twins are everywhere! It seems like every time I turn around I find myself thinking, "Seriously?" How can there possibly be so many twins in my general viscinity? At least none of them have been identical girls. I'm not sure I could handle that. And 2. Pregnant women talking about how much they want to have their babies early. Now, I must admit, that in my life I have joked a time or two about how I wouldn't have minded if Solana had come a bit early so I completely understand where they're coming from and don't begrudge them these silly comments one bit. But, if you can imagine, I'm kind of sensitive to this line of talk right now and don't understand why I'm suddenly surrounded by it. When and how did early delivery become something I hear about on a daily basis? Like I said - cosmic joke.
Now, to important matters. Chloe's heart valve reopened. This is not good but they can give her some medicine to try and close it. The problem is that a side affect of this medicine is that it stops her from peeing. If she stops peeing then fluids will build up in her body and they'll probably accumulate in her lungs. They noticed some fluid in her lungs today and we really don't want that to continue so they gave her another drug that's like a water pill to try and encourage urination.
And get this. These drugs are going into her new IV that she got this morning because the one they put in yesterday (in her head) came out on it's own. Yes, I'm serious. BUT - - - they tell me that they got this new one (also in her head) in on the first try. Thank you Jesus!
Overall, I think this was a pretty good day for Chloe. While some things aren't going exactly as we want, many things are getting better. Her blood gasses look good, she's no longer acidic, her O2 was only around 55%, she's tolerating the nurses bother her better, the new IV is in the middle of her head so they were able to lay her on her right side and she seemed to like that, etc. And she turned 2 weeks old today completing what would have been week 26 in utero! Let's keep praying.
Sunday, September 6, 2009
Saturday, September 5, 2009
Day 13 - Getting Better/IV drama
I'm sitting in Chloe's room right now while the third nurse tries to get an IV into her fragile little body. They had stuck her four times before I had to leave her side to make room for a third nurse to come in and try. I'm not sure how much good I was doing by her side, anyway. I was cupping her little head and humming to her but I was getting upset and had a hard time humming. Plus, my palms were getting sweaty and I kept having to lean back so that my tears wouldn't fall into her isolette.
I questioned the doctor and nurse practitioner, who happened to be coming by on rounds during these IV attempts, and they told me that they try to keep IV's in place until they go "bad." A bad IV means that it has come out of the vein and the fluid goes into the tissue around her vein instead of into it. Tiny baby veins are so delicate that IV's don't last super long. I was here for the first IV removal this week, though, and know that it had NOT gone bad. The nurse just took it out because she thought Chloe wouldn't need it again. We're on her third IV this week and I'm less than pleased. It's a difficult balance to express displeasure to the people caring for your baby, as well as, appreciation and respectfulness of all that they are doing. I think I pulled it off well, but come to think of it, I suppose I feel it.
We really are lucky to enjoy the wonderful quality of care that Chloe receives. And I'm thrilled that they are finally giving us good reports again. She seems to be improving quite a bit!
-The dopamine and hydrocortisone seem to be working well and they hope to start weaning her off the dopamine soon.
-She's urinating quite a bit.
-Blood pressure is up.
-O2 levels are up and so they're able to lower the O2 on her respirators.
-White blood cells are down so we think the antibiotics are working (even though we still haven't gotten a confirmation of infection).
Now we want to pray that:
-they can sucessfully wean her off the dopamine (they can try feedings again once she's weaned)
-her kidneys are getting adequate blood supplies to continue appropriate urine output
-her stomach gets adequate blood supply in preparation to digest my yummy milk that they will give her soon
-she is protected from pain and discomfort as the nurses do all they can to care for her
-the antibiotics continue to work and she is protected from future infections
Note: They finally got the IV in. It's in her head and looks pretty bad but they couldn't get it in anywhere else. I hope it hurt less going into her head, anyway. Let's also pray that this IV lasts a long time and they don't have to invade on her poor little arms and feet again any time soon!
Here's my little darling snoozing with her new IV in her little head. She's snuggled up with her snoodle doll. I wear it inside my shirt and then bring it to her so she can snuggle up next to it.
I questioned the doctor and nurse practitioner, who happened to be coming by on rounds during these IV attempts, and they told me that they try to keep IV's in place until they go "bad." A bad IV means that it has come out of the vein and the fluid goes into the tissue around her vein instead of into it. Tiny baby veins are so delicate that IV's don't last super long. I was here for the first IV removal this week, though, and know that it had NOT gone bad. The nurse just took it out because she thought Chloe wouldn't need it again. We're on her third IV this week and I'm less than pleased. It's a difficult balance to express displeasure to the people caring for your baby, as well as, appreciation and respectfulness of all that they are doing. I think I pulled it off well, but come to think of it, I suppose I feel it.
We really are lucky to enjoy the wonderful quality of care that Chloe receives. And I'm thrilled that they are finally giving us good reports again. She seems to be improving quite a bit!
-The dopamine and hydrocortisone seem to be working well and they hope to start weaning her off the dopamine soon.
-She's urinating quite a bit.
-Blood pressure is up.
-O2 levels are up and so they're able to lower the O2 on her respirators.
-White blood cells are down so we think the antibiotics are working (even though we still haven't gotten a confirmation of infection).
Now we want to pray that:
-they can sucessfully wean her off the dopamine (they can try feedings again once she's weaned)
-her kidneys are getting adequate blood supplies to continue appropriate urine output
-her stomach gets adequate blood supply in preparation to digest my yummy milk that they will give her soon
-she is protected from pain and discomfort as the nurses do all they can to care for her
-the antibiotics continue to work and she is protected from future infections
Note: They finally got the IV in. It's in her head and looks pretty bad but they couldn't get it in anywhere else. I hope it hurt less going into her head, anyway. Let's also pray that this IV lasts a long time and they don't have to invade on her poor little arms and feet again any time soon!
Here's my little darling snoozing with her new IV in her little head. She's snuggled up with her snoodle doll. I wear it inside my shirt and then bring it to her so she can snuggle up next to it.
Friday, September 4, 2009
We are Blessed
I have to take a moment to reflect on all the love and support we've received through this most difficult time in our lives. We are blessed to have an amazing family.
Dave's sister, Carol, is busy with three kiddos of her own and one on the way. Yet she always keeps in touch and is constantly sending little gifts for Solana and the twins. My sister, Leticia, is my ever vigilant prayer warrior and support person. I owe many days of sanity to her relentless phone calls. And my mother has put her life on hold to spend most of the last two months in Ohio helping us survive my bedrest and now the challenge of NICU. And Dave. I thank God every day for such a wonderful husband. He has been through all of this right along side me and yet, manages to take care of Solana and me physically and emotionally. Some people credit me with being "strong" through all of this but I am such a mess. I wouldn't be much more than a soggy blob without Dave. I couldn't be a luckier girl.
But I already knew I was blessed with family and, as much as they have come through for me in such amazing ways, I'm not terribly surprised.
What has surprised me is the amount of love and support we've received from strangers and new friends. Who knew that Facebook would be the vehicle to send hundreds (or possibly thousands) of prayers heaven-bound for our twins and now for Chloe? Many times I stared at Facebook in amazement at all the messages from friends and friends of Leticia. Beautiful, supportive, and loving messages. And who knew that there are so many other TTTS mothers out there on the TTTS Foundation website? Their stories and experience have been invaluable to me on this journey and I honestly would feel lost and alone without them. I'm so thankful for all of those wonderful prayers and blessings.
And then there are our new Ohio friends. Friends we've only known a few short months but who have treated us like family. How is it possible that we surrounded ourselves with such amazing people right before our time of need? I'll tell you what. I stopped asking myself "why" this happened to us because I don't believe that it was God's plan or hand that took our baby girl, Leila, away from us. And I don't think that God intended for Chloe to be born premature and struggle to survive in the NICU for months. I think sometimes bad things just happen to good people (there's actually a good book with this title). TTTS is a completely random biological phenomenon that can happen to anyone. We did nothing to bring this on ourselves nor were we chosen to hurt. What I DO believe, though, is that we are blessed by God to be surrounded by people whose hearts have been touched by Him. He saw our pain, heard our prayers, and filled their hearts with generosity.
Thank you to all of you who have prayed for Chloe and Leila. Thank you for reaching out and touching us with your kindess. Each prayer, message, and generous act of kindness has lifted my spirit and I will ever be grateful for that.
Dave's sister, Carol, is busy with three kiddos of her own and one on the way. Yet she always keeps in touch and is constantly sending little gifts for Solana and the twins. My sister, Leticia, is my ever vigilant prayer warrior and support person. I owe many days of sanity to her relentless phone calls. And my mother has put her life on hold to spend most of the last two months in Ohio helping us survive my bedrest and now the challenge of NICU. And Dave. I thank God every day for such a wonderful husband. He has been through all of this right along side me and yet, manages to take care of Solana and me physically and emotionally. Some people credit me with being "strong" through all of this but I am such a mess. I wouldn't be much more than a soggy blob without Dave. I couldn't be a luckier girl.
But I already knew I was blessed with family and, as much as they have come through for me in such amazing ways, I'm not terribly surprised.
What has surprised me is the amount of love and support we've received from strangers and new friends. Who knew that Facebook would be the vehicle to send hundreds (or possibly thousands) of prayers heaven-bound for our twins and now for Chloe? Many times I stared at Facebook in amazement at all the messages from friends and friends of Leticia. Beautiful, supportive, and loving messages. And who knew that there are so many other TTTS mothers out there on the TTTS Foundation website? Their stories and experience have been invaluable to me on this journey and I honestly would feel lost and alone without them. I'm so thankful for all of those wonderful prayers and blessings.
And then there are our new Ohio friends. Friends we've only known a few short months but who have treated us like family. How is it possible that we surrounded ourselves with such amazing people right before our time of need? I'll tell you what. I stopped asking myself "why" this happened to us because I don't believe that it was God's plan or hand that took our baby girl, Leila, away from us. And I don't think that God intended for Chloe to be born premature and struggle to survive in the NICU for months. I think sometimes bad things just happen to good people (there's actually a good book with this title). TTTS is a completely random biological phenomenon that can happen to anyone. We did nothing to bring this on ourselves nor were we chosen to hurt. What I DO believe, though, is that we are blessed by God to be surrounded by people whose hearts have been touched by Him. He saw our pain, heard our prayers, and filled their hearts with generosity.
Thank you to all of you who have prayed for Chloe and Leila. Thank you for reaching out and touching us with your kindess. Each prayer, message, and generous act of kindness has lifted my spirit and I will ever be grateful for that.
Day 12 - Hanging in There
We've been waiting for some good news since Chloe's first bad day. It's been a long few days but I think she's finally on the rebound. We got a good report from her nurse tonight. Her blood pressure seems to be up and stabalizing. The dopamine and cortisol are doing their jobs! We believe that her low blood pressure started a chain reaction of problems and that raising it will get her on the right track again.
Here's what we're praying for:
- Her blood pressure continues to stabalize and she can be weaned off the dopamine and cortisol in the next day or so.
- Her PDA (hole in the heart that closes for full-term babies) remains closed
- Kidneys get increased blood flow as her blood pressure rises so that she continues to increase and maintain an appropriate urine output.
- Stomach gets increased blood flow as her blood pressure rises so that she can digest mama's milk as soon as they begin feeds again.
Here's what we're praying for:
- Her blood pressure continues to stabalize and she can be weaned off the dopamine and cortisol in the next day or so.
- Her PDA (hole in the heart that closes for full-term babies) remains closed
- Kidneys get increased blood flow as her blood pressure rises so that she continues to increase and maintain an appropriate urine output.
- Stomach gets increased blood flow as her blood pressure rises so that she can digest mama's milk as soon as they begin feeds again.
Thursday, September 3, 2009
Chloe knows Mama and Daddy
Chloe's been leaning heavily on her respirators and the nurses can't seem to get her oxygen levels down without the O2 saturation in her body getting too low.
I spent some time humming to her today and decided that she really likes my singing. She must know I'm her Mama. Every time I hummed her O2 saturation would increase. It's nice to feel as though I'm actually doing something to help my little girl. The same thing happened for Dave when we went back this evening. He would talk and sing to her and she'd just eat it up. Of course, she used to react to his voice from inside my belly. It probably sounds the same from inside her isolette.
The doctor really wants Chloe to start getting some nutrituion so they started her back on milk feedings today. There's a little feeding tube that goes into her mouth and all the way down into her belly - that's how they get the milk in. Unfortunately, that's also how they're getting the milk out. They're trying 1cc feedings every four hours. Before putting in a new 1cc of milk they can actual suck out any remaining fluid from the last feeding and there seems to be plenty left. She's not digesting. Prayer for the night. "Dear Lord, Please make Chloe's little body digest the nourishing milk she is fed so that she can grow bigger, stronger, and closer to coming home to her loving family. In Your name I pray. Amen"
I spent some time humming to her today and decided that she really likes my singing. She must know I'm her Mama. Every time I hummed her O2 saturation would increase. It's nice to feel as though I'm actually doing something to help my little girl. The same thing happened for Dave when we went back this evening. He would talk and sing to her and she'd just eat it up. Of course, she used to react to his voice from inside my belly. It probably sounds the same from inside her isolette.
The doctor really wants Chloe to start getting some nutrituion so they started her back on milk feedings today. There's a little feeding tube that goes into her mouth and all the way down into her belly - that's how they get the milk in. Unfortunately, that's also how they're getting the milk out. They're trying 1cc feedings every four hours. Before putting in a new 1cc of milk they can actual suck out any remaining fluid from the last feeding and there seems to be plenty left. She's not digesting. Prayer for the night. "Dear Lord, Please make Chloe's little body digest the nourishing milk she is fed so that she can grow bigger, stronger, and closer to coming home to her loving family. In Your name I pray. Amen"
Wednesday, September 2, 2009
Randomness
Chloe had a pretty good day. Her blood gasses are looking better. The doctor wants to start feeding her milk again tomorrow if her blood draws continue to look good. Great! I spent about five hours with her and it was a fairly uneventful day. We like those days.
Unfortunately, they decided to give her more blood to raise her red blood cell count and so they had to put a new IV in because they already took yesterday's IV line out. I'm sure this won't be her last IV but I was pretty upset that they had to put in a new one. I wish they had anticipated needing it again and left it in. It hurts me to get an IV so I imagine it hurts her, as well. I feel guilty and embarrassed to admit this but I looked away - couldn't even watch them put it in.
Chloe opened her eyes for the first time a few days ago but she's had a little mask over them ever since because she's been under the billi lights. They took off the lights yesterday and covered the isolette to keep her in a dark calm environment. As I peeked in today she opened her eyes A LOT. That was probably the coolest thing I've ever seen. I thoroughly enjoyed watching her little face - it felt like I was looking at her for the first time. She looks so beautiful! That is the feeling of pure joy.
I walked to the cafeteria to grab some lunch and on the way back into the maternity building I saw a new mother being wheeled outside by her husband - new baby in her lap. I knew I shouldn't watch but I found myself drawn to the scene. They looked so happy. It put a smile on my face and I just stopped and watched - drawn like a moth to a flame. My mind raced. "What are you doing? You shouldn't watch this. But I'm not upset. They look so happy and sweet. What's wrong with watching?" Then it happened. My face cracked and I was suddenly race-walking (in my post C-section way) to the elevators to hide my face. I knew it would happen. I don't know why I torture myself. Stupid stupid stupid.
Dave picked me up from the hospital and we drove to the new house to pay the painter. He's completely finished now and the house looks fantastic! We really bought a fantastic house! I love it can't wait to move and be settled in it!
We attended a parent's meeting at our church, where Solana will begin Pre-K on Wednesday. On the way there I saw an airplane flying overhead. Dave has pointed out and told me about these planes that are based out of Wright Patterson AFB nearby. They're enormous! C-5's or something like that. They're so big, in fact, that it looks like they're barely moving across the sky and might fall out of the sky at any moment. For some reason, watching this plane move very very slowly across the horizon made me think about the fact that life goes on for the rest of the world. We're in this weird little holding pattern waiting for Chloe to get out of the hospital and it almost seems like it's not real life - like we're living some weird dream sequence that just isn't ending... But it is real life. It's our real life and I need to own it.
I LOVE Solana's school. She's going to be a St. Albert the Great "Stag" (get it?) Her teacher is awesome and I can't wait to get involved. I signed up to make play-doh for the class and Dave already wants to volunteer for the Christmas tree sale. We purchased a home in Centerville because of the great schools but Dave jokes that we might not use them because I love St. Albert so much. LOL! I guess we'll see!
Two packages arrived today. Is it possible for something to be ironic and appropriate at the same time? The first package was filled with super cute Hershey's candy bars called "HERESHEIS" bars. They're like little birth announcements and have all of Chloe's birth information on them. Just adorable! The second package was Leila's urn. It's so small and has an Italian Renaissance-style angel with huge wings embracing the urn. I think it's absolutely beautiful and I love the thought of angels embracing and caring for my Leila in heaven.
Unfortunately, they decided to give her more blood to raise her red blood cell count and so they had to put a new IV in because they already took yesterday's IV line out. I'm sure this won't be her last IV but I was pretty upset that they had to put in a new one. I wish they had anticipated needing it again and left it in. It hurts me to get an IV so I imagine it hurts her, as well. I feel guilty and embarrassed to admit this but I looked away - couldn't even watch them put it in.
Chloe opened her eyes for the first time a few days ago but she's had a little mask over them ever since because she's been under the billi lights. They took off the lights yesterday and covered the isolette to keep her in a dark calm environment. As I peeked in today she opened her eyes A LOT. That was probably the coolest thing I've ever seen. I thoroughly enjoyed watching her little face - it felt like I was looking at her for the first time. She looks so beautiful! That is the feeling of pure joy.
I walked to the cafeteria to grab some lunch and on the way back into the maternity building I saw a new mother being wheeled outside by her husband - new baby in her lap. I knew I shouldn't watch but I found myself drawn to the scene. They looked so happy. It put a smile on my face and I just stopped and watched - drawn like a moth to a flame. My mind raced. "What are you doing? You shouldn't watch this. But I'm not upset. They look so happy and sweet. What's wrong with watching?" Then it happened. My face cracked and I was suddenly race-walking (in my post C-section way) to the elevators to hide my face. I knew it would happen. I don't know why I torture myself. Stupid stupid stupid.
Dave picked me up from the hospital and we drove to the new house to pay the painter. He's completely finished now and the house looks fantastic! We really bought a fantastic house! I love it can't wait to move and be settled in it!
We attended a parent's meeting at our church, where Solana will begin Pre-K on Wednesday. On the way there I saw an airplane flying overhead. Dave has pointed out and told me about these planes that are based out of Wright Patterson AFB nearby. They're enormous! C-5's or something like that. They're so big, in fact, that it looks like they're barely moving across the sky and might fall out of the sky at any moment. For some reason, watching this plane move very very slowly across the horizon made me think about the fact that life goes on for the rest of the world. We're in this weird little holding pattern waiting for Chloe to get out of the hospital and it almost seems like it's not real life - like we're living some weird dream sequence that just isn't ending... But it is real life. It's our real life and I need to own it.
I LOVE Solana's school. She's going to be a St. Albert the Great "Stag" (get it?) Her teacher is awesome and I can't wait to get involved. I signed up to make play-doh for the class and Dave already wants to volunteer for the Christmas tree sale. We purchased a home in Centerville because of the great schools but Dave jokes that we might not use them because I love St. Albert so much. LOL! I guess we'll see!
Two packages arrived today. Is it possible for something to be ironic and appropriate at the same time? The first package was filled with super cute Hershey's candy bars called "HERESHEIS" bars. They're like little birth announcements and have all of Chloe's birth information on them. Just adorable! The second package was Leila's urn. It's so small and has an Italian Renaissance-style angel with huge wings embracing the urn. I think it's absolutely beautiful and I love the thought of angels embracing and caring for my Leila in heaven.
Tuesday, September 1, 2009
Bad Day
Chloe had her first bad day today. We had been spoiled. Everything seemed to be going right for her first nine days. I was becoming complacent and getting too used good news.
As soon as I walked into Chloe's room I knew something was wrong. There was a second respirator running and she had additional lines running into her little body. The nurse practitioner saw me arrive and followed me into the room. She began to explain everything that was happening and I had to work really hard to maintain enough composure to listen. The tears were already flowing.
Here's a summary of her first bad day:
- Her CO2 level was too high. Thus, the second (Jet) Respirator to help her get rid of some CO2
- Her blood was acidic. This happens with CO2 levels are too high.
- Her O2 level was too low. They raised the O2 level on her respirators to around 59% in order to keep the O2 in her body high enough. (Ideally, she would be at 21% - breathing the same air as us.)
- She stopped digesting milk so they stopped her feedings and put her back on an IV drip.
- Her white blood cells were high. They think she may have an infection.
- Her red blood cells are low. She had a new IV in her foot to give her some extra blood.
It's overwhelming to hear all these bad things at once but the nurses didn't seem too concerned. They are treating everything and the doctor said that these problems, while they hope not to see them, are common with babies as premature as Chloe. I couldn't help but think - she could die from an infection...
They do several blood draws a day and I got to put my hands over Chloe's head and legs to try and comfort her during one such draw. They have to poke her heel to make it bleed and she was pretty upset about the procedure. She has no voice because of the tubes down her throat but I could see her crying. It was that baby cry/scream where their face turns red. So painful to watch. Tears were pouring down my face as I tried to remain calm enough to support her. It really sucks to watch your baby get poked all day long.
I think I spent about 7 hours in her room today. This is emotionally and physically exhausting. Now I know why everyone keeps telling me the NICU is a hard hard place to be.
As soon as I walked into Chloe's room I knew something was wrong. There was a second respirator running and she had additional lines running into her little body. The nurse practitioner saw me arrive and followed me into the room. She began to explain everything that was happening and I had to work really hard to maintain enough composure to listen. The tears were already flowing.
Here's a summary of her first bad day:
- Her CO2 level was too high. Thus, the second (Jet) Respirator to help her get rid of some CO2
- Her blood was acidic. This happens with CO2 levels are too high.
- Her O2 level was too low. They raised the O2 level on her respirators to around 59% in order to keep the O2 in her body high enough. (Ideally, she would be at 21% - breathing the same air as us.)
- She stopped digesting milk so they stopped her feedings and put her back on an IV drip.
- Her white blood cells were high. They think she may have an infection.
- Her red blood cells are low. She had a new IV in her foot to give her some extra blood.
It's overwhelming to hear all these bad things at once but the nurses didn't seem too concerned. They are treating everything and the doctor said that these problems, while they hope not to see them, are common with babies as premature as Chloe. I couldn't help but think - she could die from an infection...
They do several blood draws a day and I got to put my hands over Chloe's head and legs to try and comfort her during one such draw. They have to poke her heel to make it bleed and she was pretty upset about the procedure. She has no voice because of the tubes down her throat but I could see her crying. It was that baby cry/scream where their face turns red. So painful to watch. Tears were pouring down my face as I tried to remain calm enough to support her. It really sucks to watch your baby get poked all day long.
I think I spent about 7 hours in her room today. This is emotionally and physically exhausting. Now I know why everyone keeps telling me the NICU is a hard hard place to be.
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