I was at the hospital for rounds this morning and listened to the Resident running down Chloe's status to the Neonatologist. It was reassuring to hear her tell him what she wanted to do and have him approve or correct her plans. Whew. Thanks for your work 27 year-old. Glad you're not the final approver on Chloe's care.
The neonatologist asked if Chloe is receiving milk with fortification and the Resident informed him that she's just on milk because of previous problems with the fortifier. I chimed in, "It's Hindmilk." Chloe's nurse then pointed out that my hindmilk was tested yesterday at 24 calories to which I quickly corrected - 24POINT EIGHT calories. At which, I expected to see his mouth drop open and hear him exclaim, "WOW! THAT'S GREAT!" To my annoyance, that didn't happen. He simultaneously tilted his head to one side and shrugged as if to say, "Well, that's great and all BUT..." Then pointed out that it's not just the calories that Chloe needs. It's the calcium and minerals for bone growth. Come on man! Give me just a little something here. Aren't you just slightly impressed? Oh well...
He agreed to leave her on milk alone for another day or so and then try to fortify again but even slower than last time. Sigh. We'll see about that. I certainly don't want to deny Chloe's bones the calcium and minerals they need but...you know. We also talked about how lactose intolerance runs in my family (Solana absolutely must have two big cups of warm milk every day and we had to buy the lactose free stuff until very recently.) Plus, my mom and sister can't even look at the stuff. I'm now on a low lactose and no raw or gas-causing vegetables for the time being. We want to make sure that, if Chloe responds negatively again, it's not due to any bad stuff in my milk.
Oh, and Chloe's daytime primary passed her observations with all "Meets" or "Exceeds" expectations. :-) She's also had 33+ years as a NICU nurse and is great so far. I think we'll work well together. If only I can get her to stop calling me Mrs. Hendrickson... ;-)
Saturday, October 31, 2009
Pump Pump Pumping
We have a really nice lady who comes to our house for two hours every Friday morning to clean the bathrooms and carpets/floors. Solana loves to chat with her (even though I try to stop her - I mean, I only get her for two hours for pete's sake)! Anyway, I was pumping yesterday during her visit and Solana kept coming in to talk to me and leaving the door open so I kept reminding her to shut the door. Finally, she asked, "Why do you want the door shut?" In my annoyance at having to remind her so many times I blurted out, "Because I'm pumping and I don't want Miss Karen to see my boobies!" Of course, I walked into the kitchen 5 minutes later and heard Solana saying, "My Mommy's Pump-Pump-Pumping and she doesn't want you to see her boobies!" I couldn't help but crack up, along with Karen....
Trying not to freak out
People have recently asked me, "Do you have any other children?" I always answer, "Yes, we have identical twins. One is in heaven and the other is in the hospital." I usually end up answering some questions and giving a brief explanation of TTTS and update on Chloe's status. Solana has heard this many times and now gives her own version of the story when asked if she has brothers and sisters.
Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day.
Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away.
My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart.
I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me.
I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really.
Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day.
Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away.
My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart.
I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me.
I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really.
Day 68 - Full feeds...again!
I don't have too much time to write. It's 7:30am and I need to get going to catch part of Chloe's 8am care. I get to help with diapers, thermometers, etc. these days if I'm around. Plus, I finally get to see her primary day nurse in action. I didn't request this woman. She just signed up for Chloe, which makes me nervous. I guess I'm going to "observe" her (for all you teacher-types).
She's up to full feeds. They tested my hindmilk again yesterday. Get this. 24.8 calories! Just call me Bessie. I only put out the premium stuff! They assume milk to be 20 calories and wanted to add fortifier to get her up to 24 or 25. Hmmmm.
The only other change is they reduced her breaths per min. to 28 to "test" her. All her blood gases have remained steady. CO2 is JUST under the max acceptable levels so they want to see if she can maintain. Prayers for her!
Love ya! Gotta run!
She's up to full feeds. They tested my hindmilk again yesterday. Get this. 24.8 calories! Just call me Bessie. I only put out the premium stuff! They assume milk to be 20 calories and wanted to add fortifier to get her up to 24 or 25. Hmmmm.
The only other change is they reduced her breaths per min. to 28 to "test" her. All her blood gases have remained steady. CO2 is JUST under the max acceptable levels so they want to see if she can maintain. Prayers for her!
Love ya! Gotta run!
Friday, October 30, 2009
Day 67 - Stable at 6cc's
Chloe had a pretty uneventful day 67. They increased her feeds to 6cc's per hour instead of the 8cc's planned (because her belly had increased in girth a bit) but her belly remains soft and she has good bowel sounds. These are both good things.
Respiratory-wise she remains stable and at the same place she's been for several days. We're still waiting for her to grow, mature those lungs, and get stronger so that they can start weaning her. She's still not ready, though.
Dave and I were present during the opthamologist's visit and he explained to us that Chloe's not actually showing signs of ROP. It's just that the blood vessels on her retina are still growing and he needs to watch her eyes until they finish growing. Here's how he explained ROP to me: Imagine the retina as a disc shape in the back of the eye. Blood vessels need to grow out from the center of the disc to the edges. The blood vessels need to remain in/on the disc. If they get "confused" and start growing out from/up off of the disc and toward the front of the eye that is ROP. Chloe's vessels are still growing correctly. It's just that they haven't finished growing, yet, so he needs to keep watching them. Why the nurse told Dave that she was headed in the direction of laser surgery, I don't know. It could happen but it's not the case as of now.
Here's another lovely shot of Chloe's beautiful eyes to brighten up your day:
As I mentioned, Dave and I got to go to the hospital at the same time yesterday. You may have wondered how we managed that one... My friend, Angela (who lives up to her name), picked up Solana and took her to their house for a little halloween party for her girls and Solana. Dave and I joined later for some yummy chili and cornbread. (Do you ever want a recipe for something because it's so good but don't because you know you'll pig out on it if you can make it? A pan of that cornbread would NOT help me toward that "last 12 pounds" goal! :-P )
Here's a picture of our Little Bo Peep on her way out the door:
Respiratory-wise she remains stable and at the same place she's been for several days. We're still waiting for her to grow, mature those lungs, and get stronger so that they can start weaning her. She's still not ready, though.
Dave and I were present during the opthamologist's visit and he explained to us that Chloe's not actually showing signs of ROP. It's just that the blood vessels on her retina are still growing and he needs to watch her eyes until they finish growing. Here's how he explained ROP to me: Imagine the retina as a disc shape in the back of the eye. Blood vessels need to grow out from the center of the disc to the edges. The blood vessels need to remain in/on the disc. If they get "confused" and start growing out from/up off of the disc and toward the front of the eye that is ROP. Chloe's vessels are still growing correctly. It's just that they haven't finished growing, yet, so he needs to keep watching them. Why the nurse told Dave that she was headed in the direction of laser surgery, I don't know. It could happen but it's not the case as of now.
Here's another lovely shot of Chloe's beautiful eyes to brighten up your day:
As I mentioned, Dave and I got to go to the hospital at the same time yesterday. You may have wondered how we managed that one... My friend, Angela (who lives up to her name), picked up Solana and took her to their house for a little halloween party for her girls and Solana. Dave and I joined later for some yummy chili and cornbread. (Do you ever want a recipe for something because it's so good but don't because you know you'll pig out on it if you can make it? A pan of that cornbread would NOT help me toward that "last 12 pounds" goal! :-P )
Here's a picture of our Little Bo Peep on her way out the door:
Wednesday, October 28, 2009
Day 66 - Half Feeds Again
Chloe's intestines looked less dilated (full of gas/bloated) in her x-ray this morning so they decided to go ahead and start her on half feeds again. That was a big relief because her nurse last night said they usually keep them off feeds for 7 days when they have problems. "7 days?!?" I thought, "Are you kidding me?"
(This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU...
As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby.
This picture was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!?
This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
(This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU...
As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby.
The plan is to increase her feeds as she tolerates them and then leave her on milk alone for a couple of days once she's on full feeds. I was very happy to hear that. Prior to this conversation I had decided to insist on milk only for at least three days before even considering fortifier again. So very reassuring they were already on that wavelength! I would tell them to forget the fortifier but they say she needs extra calcium and minerals for her bones because, due to the extended TPN nutrition, she's behind the curve on bone growth. We'll see how it goes. I think I'm going to be extremely active in he decision-making process on fortifier from now on. We'll be moving forward much more slowly than I think they anticipate. Fortunately, she's at least getting some extra calories from my hind milk. Which is, by the way, an extremely huge pain in the butt to gather! But soooo worth it if it helps my sweetness grow!
In other news, the opthamologist paid a visit yesterday. With all the belly troubles I had forgotten to ask for the results but also thought we were in the clear. Apparently, they saw something and think she might be on her way to needing laser surgery. I didn't think she would develop eye troubles now but it seems she can. The report was via a nurse, of course, and they can't ever seem to make out the opthamologist's notes, so we'll need to wait until he returns tomorrow to get more info. Fingers crossed that it goes well tomorrow!
This picture was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!?
This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
Tuesday, October 27, 2009
Day 65 - Problems with fortifier. Ugh
Well, it looks like Chloe's having problems with the fortifier they're adding to my milk, afterall. I'm not terribly surprised but definitely disappointed. Poor baby's belly is huge and distended. She has gas trapped in her belly and throughout her intestines. She also appears to have stopped digesting the milk based on the amount they pulled off her belly this afternoon. They stopped her feeds for tonight to give her a rest. I'll be on the phone tomorrow morning to see what their plan is. Fortunately, they hadn't removed her pic line because she's back on TPN for now.
Otherwise, she's about the same. Her oxygen setting is a bit lower, which is good.
More tomorrow...
Otherwise, she's about the same. Her oxygen setting is a bit lower, which is good.
More tomorrow...
Monday, October 26, 2009
Day 64 - 2 calories
They are now fortifying my milk with two extra calories. I think I have a better understanding of the calories. They're only increasing my milk by a few calories *per ounce.* My regular milk is 20 calories and they're currently increaseing it to 22 calories. They hope to get up to 24 or 25. She's handling the two extra calories so far. I'm not sure what they'll do when they start using my hindmilk (I think that'll actually be tomorrow). It's naturally at 22 calories, so that'll throw it up another couple.
We're floating on happy clouds this week enjoying Chloe's progress. So thankful...
We're floating on happy clouds this week enjoying Chloe's progress. So thankful...
Sunday, October 25, 2009
Day - 63
2pounds 13ounces! Can you believe it? She's putting on weight like a champ! They started adding calories to her milk today. Fingers crossed that she does well with that! I'm still a bit nervous because of her bowel history but looking forward to 1800grams (almost 4 pounds). That's when she can wear clothes. The nurse told me to check out WalMart and BabiesRUs. I think I'll have to do that because I just spent an hour on the internet and bought nothing. I swear I'm the worst internet shopper ever!
Ventilator settings are holding. Still not much improvement. Any day now. Any day...
Chloe turned two months old on Friday.
She's 9 weeks old today.
Tomorrow she's 34 weeks (gestational)!
Ventilator settings are holding. Still not much improvement. Any day now. Any day...
Chloe turned two months old on Friday.
She's 9 weeks old today.
Tomorrow she's 34 weeks (gestational)!
Saturday, October 24, 2009
Day 62 - Full Feeds
Well, Chloe's been doing so well with feedings that she's now getting her full feeds. In addition, her full feeds have increased form 7.5 to 8cc's per hour because she's gained weight. Chloe's now 1250 grams or 2pounds 12ounces. She's getting big!
We're having kangaroo care with her every day now and she seems to enjoy it. I'll do kangaroo care every day that I can and am soooo thankful to our friends Matt and Dana for watching Solana today. I couldn't have given Chloe her daily dose of Mommy medicine without them! Mmmmwah to the best former neighbors ever! :-)
Chloe's still having some electrolyte issues but they've started her on some medication for that. In addition, they've stopped the lasix and started her on two diuretic medications in hopes of helping her lungs. We're still at 30bpm and a pressure setting of 17 on her ventilator. I'm sure she'll have a huge improvement any day now!
Our NICU neighbor was sorting her little boy's clothes yesterday and upon chatting with her she was shocked that I hadn't yet stocked up on premie clothes. In all honesty, I think I was too scared of losing Chloe to go clothing shopping for her. After speaking with this mom, though, I realized I'm not of that frame of mind anymore. I think now we're just focused on getting her growing and healthy. What a wonderful feeling! Praise God for this gift. Now, if you'll excuse me I have some internet shopping to do!
Love to you all.
We're having kangaroo care with her every day now and she seems to enjoy it. I'll do kangaroo care every day that I can and am soooo thankful to our friends Matt and Dana for watching Solana today. I couldn't have given Chloe her daily dose of Mommy medicine without them! Mmmmwah to the best former neighbors ever! :-)
Chloe's still having some electrolyte issues but they've started her on some medication for that. In addition, they've stopped the lasix and started her on two diuretic medications in hopes of helping her lungs. We're still at 30bpm and a pressure setting of 17 on her ventilator. I'm sure she'll have a huge improvement any day now!
Our NICU neighbor was sorting her little boy's clothes yesterday and upon chatting with her she was shocked that I hadn't yet stocked up on premie clothes. In all honesty, I think I was too scared of losing Chloe to go clothing shopping for her. After speaking with this mom, though, I realized I'm not of that frame of mind anymore. I think now we're just focused on getting her growing and healthy. What a wonderful feeling! Praise God for this gift. Now, if you'll excuse me I have some internet shopping to do!
Love to you all.
Friday, October 23, 2009
Day 60 - DC the TPN
Well, not too much to report. Chloe was increased to 6cc's per hour on day 60 and her TPN (IV nutrition) was discontinued! They're using a heparin lock flush on her pic line to keep it from clotting but might take it out in a couple of days or so. It'll be weird to have Chloe IV/Pic free!
She's holding steady on her ventilator settings. They tried to decrease her breaths from 30 to 28 bpm but had to go back up because she had too much CO2 on her latest blood gas. She'll get there, though. We just need to be patient with her.
Regarding her extra calories, they decided on the following plan:
-Continue to feed Chloe from my first 50 pumpings (this is the milk that contains the colostrum and other important antibodies that babies need in the beginning of their lives).
-Once she's up to full feeds (7cc's per hour and probably on day 61) they'll start adding the breast milk fortifier.
-They'll add the fortifier only 1 calorie at a time to make sure she's not overwhelmed with a sudden change.
-Once they finish the first 50 pumpings they'll start feeding her the hindmilk I've started pumping. It sure feels good to have her actually drinking my milk! I feel like we're finally harvesting the fruits of my pumping labor!
She's holding steady on her ventilator settings. They tried to decrease her breaths from 30 to 28 bpm but had to go back up because she had too much CO2 on her latest blood gas. She'll get there, though. We just need to be patient with her.
Regarding her extra calories, they decided on the following plan:
-Continue to feed Chloe from my first 50 pumpings (this is the milk that contains the colostrum and other important antibodies that babies need in the beginning of their lives).
-Once she's up to full feeds (7cc's per hour and probably on day 61) they'll start adding the breast milk fortifier.
-They'll add the fortifier only 1 calorie at a time to make sure she's not overwhelmed with a sudden change.
-Once they finish the first 50 pumpings they'll start feeding her the hindmilk I've started pumping. It sure feels good to have her actually drinking my milk! I feel like we're finally harvesting the fruits of my pumping labor!
Thursday, October 22, 2009
Day 59 - Fortifier
Chloe had a really good day yesterday. She's up to 5cc's milk per hour and handling it. Based on her weight, 7cc's per hour is a full feeding so she's getting really close to that! They're talking about fortifying my milk with extra calories. Unfortunately, the fortifier is derived from cow's milk and that makes me nervous. I wanted to use hind milk to increase the calories but they're talking about increasing the milk to 120 kcal! My 22kcal hind milk can't even touch that! She's doing so well, though, that I don't want to introduce anything weird to her belly that could set her back. I asked if they could at least introduce the fortifier slowly. Any advise from you premie moms?
A few other things going on with Chloe:
-Lungs are looking a bit wet so they're giving her some lasix to get her to pee more and, if those improve her lungs, they'll put her on diuretics for a few days to improve them further. Still trying to move closer to get her off the ventilator.
-Red blood cells are still looking low after a blood transfusion earlier this week. This is typical for preemies. They're constantly drawing blood and it's hard for them to replenish. She'll probably get a second transfusion later today.
-Direct Bilirubin is high so she's on some medication for that.
A few other things going on with Chloe:
-Lungs are looking a bit wet so they're giving her some lasix to get her to pee more and, if those improve her lungs, they'll put her on diuretics for a few days to improve them further. Still trying to move closer to get her off the ventilator.
-Red blood cells are still looking low after a blood transfusion earlier this week. This is typical for preemies. They're constantly drawing blood and it's hard for them to replenish. She'll probably get a second transfusion later today.
-Direct Bilirubin is high so she's on some medication for that.
Wednesday, October 21, 2009
Day 58 - Good Kangaroo - Bad Piggie
Well, Chloe had another good milk day yesterday. They increased her feedings to 4cc's every hour on the continuous feed. She stooled in every diaper for the day nurse. Not much at night so I imagine I'll be hearing about a big one early today. Both of these things seem pretty darn miraculous to me! Definitely Praise-worthy! Just a couple of weeks ago we waited for days and days to get the barium enema through her system and held our breath when they had her feedings to 1cc every three hours (which was not successful, by the way)! Thank You Thank You Thank You God! And the milk seems to be doing its job, as well. Chloe's up to 2lb 7oz. That's right - a whole pound heavier than when she was born! If her lungs can grow/mature as well as her weight then her vent settings should start getting better. Can't wait to get those tubes out!
Last night was a wonderful kangaroo care. Her O2 saturation improved significantly. I feel so cool when her alarm goes off at 100% saturation and they keep coming back to lower her settings... After a few minutes of wide-eyed wonderment she conked out - hard! She was like a sack of cherry tomatoes when they put her back into the isolette. I had to leave before I turned into a pumpkin at 10pm so I only got to hold her for 90 minutes but they sure were luxurious (to borrow a word from my friend Megan).
Chloe does wonders for my Mommy ego, which needed a boost after Monday's kangaroo care. As soon as they gave her to me on Monday she desatted and had bradycardia (her heart rate plummeted). I know it's a normal thing for a premie to brady but it's another thing for it to happen on your chest. Her heart rate dropped to like 39 and her saturation to 4osomething. They bagged her (disconnected the ventilator and manually pumped oxygen into her breathing tube) and the respiratory therapist adjusted her tubes. Talk about scary! Fortunately, I seem to have developed the ability to stay supremely calm and still during stressful moments so they were all able to do their work around me like I was just another isolette or other inanimate object. (I think I learned this ability during my plethora of stressful pregnancy ultrasounds). Fortunately, the event only lasted a couple of minutes before she was back up to normal. (And I managed to keep my breasts covered the whole time - lol!) It definitely gave me a complex for the rest of the night, though! I wanted to put her back to recover. "Surely, she doesn't need extra work right now." I said. But they insisted that every moment with me is a good one for her so I kept her. As much of a proponent and believer in skin-to-skin as I am I was suddenly convinced that I was hurting her and making her work harder. She did...o..k...well...fine but her sats never sky rocketed the way they usually do. I think she was just having a rough night. Hopefully, I helped a bit...
Anyway, last night was great! And she seems to keep getting better. Here are some pictures of our lovely girl. Don't be fooled by the uber-chubby-looking one. She's not really that chunky - her face was just smushed forward or something. I like the idea, though, and I think she's going to have mega cheeks like her big sis'!
Speaking of big sis, Solana gets her H1N1 vaccination at school today! We talked about it for about 10 minutes this morning and I think she's ready! She agrees that piggy flu is bad and the shot will only hurt a little bit. Plus, I promised her an ice cream cone if she does a good job... I debated whether or not I should go since she tends to up the drama setting by several notches when I'm within hearing distance but finally decided my support is more important than drama. (Plus, I've quickly learned that I'm the overbearing type of school mom. Imagine that!) Wish us luck!
Last night was a wonderful kangaroo care. Her O2 saturation improved significantly. I feel so cool when her alarm goes off at 100% saturation and they keep coming back to lower her settings... After a few minutes of wide-eyed wonderment she conked out - hard! She was like a sack of cherry tomatoes when they put her back into the isolette. I had to leave before I turned into a pumpkin at 10pm so I only got to hold her for 90 minutes but they sure were luxurious (to borrow a word from my friend Megan).
Chloe does wonders for my Mommy ego, which needed a boost after Monday's kangaroo care. As soon as they gave her to me on Monday she desatted and had bradycardia (her heart rate plummeted). I know it's a normal thing for a premie to brady but it's another thing for it to happen on your chest. Her heart rate dropped to like 39 and her saturation to 4osomething. They bagged her (disconnected the ventilator and manually pumped oxygen into her breathing tube) and the respiratory therapist adjusted her tubes. Talk about scary! Fortunately, I seem to have developed the ability to stay supremely calm and still during stressful moments so they were all able to do their work around me like I was just another isolette or other inanimate object. (I think I learned this ability during my plethora of stressful pregnancy ultrasounds). Fortunately, the event only lasted a couple of minutes before she was back up to normal. (And I managed to keep my breasts covered the whole time - lol!) It definitely gave me a complex for the rest of the night, though! I wanted to put her back to recover. "Surely, she doesn't need extra work right now." I said. But they insisted that every moment with me is a good one for her so I kept her. As much of a proponent and believer in skin-to-skin as I am I was suddenly convinced that I was hurting her and making her work harder. She did...o..k...well...fine but her sats never sky rocketed the way they usually do. I think she was just having a rough night. Hopefully, I helped a bit...
Anyway, last night was great! And she seems to keep getting better. Here are some pictures of our lovely girl. Don't be fooled by the uber-chubby-looking one. She's not really that chunky - her face was just smushed forward or something. I like the idea, though, and I think she's going to have mega cheeks like her big sis'!
Speaking of big sis, Solana gets her H1N1 vaccination at school today! We talked about it for about 10 minutes this morning and I think she's ready! She agrees that piggy flu is bad and the shot will only hurt a little bit. Plus, I promised her an ice cream cone if she does a good job... I debated whether or not I should go since she tends to up the drama setting by several notches when I'm within hearing distance but finally decided my support is more important than drama. (Plus, I've quickly learned that I'm the overbearing type of school mom. Imagine that!) Wish us luck!
She's going to get cheeks like Solana!
I think the bow's kind of cheesy but the nurses seemed to like it so I let it stay. For a bit...
Tuesday, October 20, 2009
Day 57 - Milk's Going Down
So sorry for the belated update! I just realized last night how much of a slacker I was this weekend when it came to posting! Then I was at the hospital until after 11:30 or so last night and had just enough energy to pump and stumble to bed some time around 12:30. This whole no-kids-at-the-hospital thing is really putting crimp in my sleep schedule! We've figured out how to visit Chloe every day without putting Solana in daycare (I considered it but just can't bring myself to put her through another new situation or exposing her to more germs.) Dave will go straight from work and then come home to have dinner with us. I'll then go after getting Solana ready for bed. I think my new blogging time will have to be morning since I don't have time when I get home... Ok - now that I've sufficiently crafted my excuse.... ;-)
Chloe. She seems to be doing well with feedings. She's fed with a tube that goes into her mouth and all the way down to her stomach. That way they can drip milk directly into her stomach. Right now they have the milk on a continuous drip. Instead of dumping an entire feeding into her stomach at one time it's slowly dripping in there throughout the day. She's up to 3cc's per hour and seems to be tolerating it. Praying that this will continue and thank God she's getting some milk nutrution!
They finally completely stopped her steroids on Saturday and, not surprisingly, her lungs are feeling it. She's struggled a bit with respiration and they've had to turn up some settings on her respirator. She's up from 18 breaths per minute to 30. Her oxygen settings are up to 35ish. I think I'm getting used to this NICU thing because I'm not terribly worried about these steps backward on her ventillator. It makes sense to me that her body's working harder and bound to struggle a bit without her steroids. Plus, she's spending some new energy on digestion so we can only expect her to excel at so many things at once. (I haven't slowed my prayers, though!) We were blessed the past couple of weeks with some ridiculously good respiration days and I have faith those days will be back soon.
Chloe is 8 weeks old.
Adjusted 33 weeks gestation.
1120 grams (2lb 7oz)
Chloe. She seems to be doing well with feedings. She's fed with a tube that goes into her mouth and all the way down to her stomach. That way they can drip milk directly into her stomach. Right now they have the milk on a continuous drip. Instead of dumping an entire feeding into her stomach at one time it's slowly dripping in there throughout the day. She's up to 3cc's per hour and seems to be tolerating it. Praying that this will continue and thank God she's getting some milk nutrution!
They finally completely stopped her steroids on Saturday and, not surprisingly, her lungs are feeling it. She's struggled a bit with respiration and they've had to turn up some settings on her respirator. She's up from 18 breaths per minute to 30. Her oxygen settings are up to 35ish. I think I'm getting used to this NICU thing because I'm not terribly worried about these steps backward on her ventillator. It makes sense to me that her body's working harder and bound to struggle a bit without her steroids. Plus, she's spending some new energy on digestion so we can only expect her to excel at so many things at once. (I haven't slowed my prayers, though!) We were blessed the past couple of weeks with some ridiculously good respiration days and I have faith those days will be back soon.
Chloe is 8 weeks old.
Adjusted 33 weeks gestation.
1120 grams (2lb 7oz)
Saturday, October 17, 2009
Cynthia dealing with TTTS
Today started out pretty well. I went for my first jog since June (before my bedrest began). I'm pathetically out of shape but that is expected after two months of laying on my butt followed by another month healing from surgery and finally, a third month of procrastinating. Bluebell, our Australian Shepherd, is thrilled to have me jogging again. Poor thing was out of work for four months and now has a mission again! After a whopping 30 minute jog (read: sarcasm) I practically crawled into the house and collapsed onto the floor to "stretch." Even so, it sure felt good to get out! Afterwards, we all got ready to head out for some morning errands. We stopped at Saxby's and I ordered my most favorite Cinnamon Tchai Tea Latte. Non-fat, of course. Then we went to Target for Halloween decorations and decided to get flu shots while we were there. (I was glad to see the flu shots because I thought everyone was already out!) We loaded up on candy and a super-cute squirrel costume for Bluebell. Solana's dressing as Little Bo Peep this year so we were really hoping for a sheep costume but no luck - the squirrel will have to do.
Things were going great until... Identical twin girls. You know, you'd think I was over it by now. Not the part about missing Leila, of course. I still think about her constantly. Every time I drive our new minivan that we bought when we found out about the twins. Every time I go into the garage and see the double stroller that Dave tried to hide in the back corner. Every time I look at the two closet doors in Solana's room that were going to be so perfect for the twins when we bought this house. And every time I visit Chloe and know that Leila would look just like her. It's the part about seeing other people's twins that I'd expect to be over by now. Those other people have nothing to do with us. Why does it bother me so much to see their twins? We saw them on the way out of the store and walked behind them on the way to the car. As I tried to hide my tears in the car all I could think was, "It's just not fair. Why do so many other people get to have perfectly healthy twin pregnancies? I swear I did everything I was supposed to do. I was probably more healthy, prepared, self-conscious, by-the-book ready for a healthy pregnancy than 95% of pregnant people out there dammit!" I feel kind of guilty. Like this is just ugliness that I can't let go of (and am subsequently sharing with all of you...please don't hate me now). Shoudn't I just be happy for all the identical twin parents who didn't suffer TTTS by now? On the one hand I know I should give myself a break but on the other hand I'm not the kind of person who's normally jealous of other people's happiness.
Okay, I just needed to get that off my chest. I feel kind of weird about putting that out there but maybe it'll help me... I certainly can't spend the rest of my life getting upset and then guilty every time I see twins...
Things were going great until... Identical twin girls. You know, you'd think I was over it by now. Not the part about missing Leila, of course. I still think about her constantly. Every time I drive our new minivan that we bought when we found out about the twins. Every time I go into the garage and see the double stroller that Dave tried to hide in the back corner. Every time I look at the two closet doors in Solana's room that were going to be so perfect for the twins when we bought this house. And every time I visit Chloe and know that Leila would look just like her. It's the part about seeing other people's twins that I'd expect to be over by now. Those other people have nothing to do with us. Why does it bother me so much to see their twins? We saw them on the way out of the store and walked behind them on the way to the car. As I tried to hide my tears in the car all I could think was, "It's just not fair. Why do so many other people get to have perfectly healthy twin pregnancies? I swear I did everything I was supposed to do. I was probably more healthy, prepared, self-conscious, by-the-book ready for a healthy pregnancy than 95% of pregnant people out there dammit!" I feel kind of guilty. Like this is just ugliness that I can't let go of (and am subsequently sharing with all of you...please don't hate me now). Shoudn't I just be happy for all the identical twin parents who didn't suffer TTTS by now? On the one hand I know I should give myself a break but on the other hand I'm not the kind of person who's normally jealous of other people's happiness.
Okay, I just needed to get that off my chest. I feel kind of weird about putting that out there but maybe it'll help me... I certainly can't spend the rest of my life getting upset and then guilty every time I see twins...
Friday, October 16, 2009
Day 54 - Good news
Look at how freakin' cute I am!!!!
Good new abounds in Chloeland!!! The opthamologist examined Chloe's eyes yesterday and said they look perfectly normal. There's no scar tissue and no abnormalties! Plus, her upper GI contrast has ALREADY made it through her small intestines and is in her colon. Go Chloe! Go Chloe! Get busy! Get to it! No surgery! They're starting her on a pedialyte drip today to get her belly working on something easy first (the surgeons like to do this for babies who have had belly problems) and will start milk tomorrow.
Thanks be to God. I have faith she's going to do much better digesting this time. I know I've said this before but I want to thank you all again for your wonderful prayers and words of encouragement. And thanks to all of your premie parents out there who posted your own blogs. It's great to read your blogs and see that your babies once struggled with some of the same problems as Chloe and are doing well now. I only wish I had more time to read!
Chloe got a new neighbor. She's an identical twin named (get this)...Chloe. She's a little bigger and her twin is already home (thank goodness). Weird, though, huh? I didn't know Chloe was THAT popular!
Thursday, October 15, 2009
Day 53 - Upper GI Barium
Dear God,
Please watch over Chloe tonight and make that barium pass through her intestines unobstructed and efficiently so that her feedings can successfully begin tomorrow.
Thank you,
Cynthia
P.S. Please tell Leila that I love and miss her very very much.
Please watch over Chloe tonight and make that barium pass through her intestines unobstructed and efficiently so that her feedings can successfully begin tomorrow.
Thank you,
Cynthia
P.S. Please tell Leila that I love and miss her very very much.
Wednesday, October 14, 2009
Day 52 - They tried, anyway
Chloe will just not pass that tiny bit of contrast that's left in her rectum. Fortunately, it's a small enough amount that they decided to go ahead and do her upper GI contrast tomorrow. They'll put some barium in her belly and watch it travel through her intestines to make sure there are no strictures or narrowing of her intestines. I can't even say how anxious we are for Chloe to begin eating. It was extremely important to her doctor two weeks ago that we get her eating and we still haven't managed to get to that point. Her liver and bones are suffering from the IV nutrition she's been receiving. We've been praying day and night that they can get her eating and the days just continue passing without reaching that point. Praying so hard that the test goes well tomorrow and that subsequent feedings are processed by her tiny and underutilized digestive system! In the meantime, I read something about hind milk that I'm going to start working on. Apparently, the milk toward the end of a "pumping session" is higher in calories than the milk pumped at the beginning. Who knew? Anyway, I talked to the lactation consultant at the hospital and she said I could try to switch bottles toward the end of pumping to collect the hind milk separately. They'll give this milk to Chloe since it's higher in calories so maybe it will help her grow more quickly. Any little bit helps, right?
On a respiration note: Chloe's doing really well with her respirator and steroid weanings. So well, in fact, that they decided to try and take her off of it today and let her breathe on her own. I was on the way home from the grocery store when the nurse told me and I almost started crying. I was excited, nervous, anxious, hopeful, scared... Well, they took her off and extabated her (took the tube out of her throat) but she only lasted about 30 minutes. Poor little thing just couldn't handle all the work required to breathe on her own. They tried, anyway. It's definitely encouraging, though, that they thought she was doing well enough to try. As soon as she's strong enough I'm sure they'll try again. And once she gets some of this hind milk in her she'll be much much stronger.
Thank you God for our precious little blessing. She is amazing!
On a respiration note: Chloe's doing really well with her respirator and steroid weanings. So well, in fact, that they decided to try and take her off of it today and let her breathe on her own. I was on the way home from the grocery store when the nurse told me and I almost started crying. I was excited, nervous, anxious, hopeful, scared... Well, they took her off and extabated her (took the tube out of her throat) but she only lasted about 30 minutes. Poor little thing just couldn't handle all the work required to breathe on her own. They tried, anyway. It's definitely encouraging, though, that they thought she was doing well enough to try. As soon as she's strong enough I'm sure they'll try again. And once she gets some of this hind milk in her she'll be much much stronger.
Thank you God for our precious little blessing. She is amazing!
Tuesday, October 13, 2009
Day 51 - Another Quiet Day
Not much to report today. Chloe's still doing well with her ventilator settings. They lowered her pressure yet again to 17. Three different people mentioned how her settings are pretty low - close to what they'll be when they remove her tubes. On the one hand - I CAN'T WAIT to get those tubes out of her throat! On the other hand - the thought of pending self-ventilation is actually kind of scary. I won't get ahead of myself, though. We still have the upper GI contrast to worry about. She still had some of the barium left today so they gave her yet another glycerin suppository. The last suppository had immediate results but nothing so far today. Please send Chloe some good pooping energy. I think she needs the help...
Day 50 - Quiet Day
Yet another quiet day in Chloeland. She's getting Zantac for some possible stomach stress (they were pulling really dark liquid out of her stomach). Things seem to be clearing up there. She's handling her ventilator weanings really well. She's down to 18 breaths per minute and 18 pressure. It seems like both those settings are getting fairly close to minimum settings on the ventilator. If she keeps this up they'll finally be able to take that tube out of her throat and I KNOW she'll LOVE that! She gags on it and fights with it pretty regularly - I can't imagine having a big ol' tube down my throat for 7 weeks! Go Chloe Go! Go Chloe Go! Let's get that tube outta there! The only thing "new" going on are her eye exams. The opthamologist saw some "irregularities" in her eye but rated her a "Stage 0" for retinopothy. I think this is good since stage 1 is the mildest form of ROP (a disease of the eye common to premies) but the Resident assigned to Chloe couldn't really tell me much more. She needs to talk to the opthamologist to get more details for me. Hopefully, this will be one place where Chloe doesn't have to undergo any more procedures. She's at high risk for retinopothy so it's unlikely but we can hope, right?
Dave spent around 3 or 4 hours working in the yard yesterday and, as a result, ended up with gasoline smell all over his hands from the lawnmower. I felt kind of bad because he decided he was too stinky to go visit Chloe in the evening. So, after some long and thoughtful consideration (yeah right), I decided to take his evening kangaroo time for him. :-) They're letting us hold her once a day. I couldn't let it go to waste, right? Anyway, she spent another wonderful hour and 45 minutes on my chest last night. COMPLETELY konked out! Chloe loves some kangaroo time, that's for sure! Maybe as much as I do?
They finally decided to give her a glycerin suppository yesterday and had some quick results. Hopefully, she finally pooped out the last of that contrast so they can do the upper GI contrast today. Let's keep praying for a clear pathway so we can finally get some food into this baby!
I don't have any new pictures of Chloe, so I thought I'd share her sister with you. She's a doll, too. Here's Solana enjoying some of her daddy's work yesterday.
Sunday, October 11, 2009
Day 49 - Rock Star
Chloe's still doing really well after surgery - thank God for these days! She's still getting some narcotics to take the edge off but they're really small doses and she doesn't seem to need it too often. She turned 7 weeks old today and tomorrow will mark 32 weeks gestation for her. She weighs 2lb 3oz. (She was up to 2lb 5oz about a week ago but seems to have lost a bit.) The contrast is still in the bottom part of her intestines. All she needs to do is pass it so they can do the upper GI contrast and then feed her! Seriously, though, our deep freezer is filling up with milk. We need some of it to start going into Chloe! Then she'll really start growing.
Yesterday was my kangaroo time with Chloe. I was nervous about how she would tolerate it but, of course, she did awesome. She was at 30% on her oxygen settings when I got there but then they gave her to me and her saturation rose to 100%. They finally had to lower her O2 settings to 21%! Yes, that's room air thank you very much. AND she was satting at 95% at that! Made me feel like a total rock star. Yes, she knows I'm her Mommy.
Today is Dave's turn at kangaroo care. As a matter of fact, he's there as I type. Chloe had her pressure setting reduced today but I'm sure she's showing off for her Daddy the same way she did yesterday for me!
Dave and I think that her PDA surgery will help Chloe turn a corner. She should have improved blood flow to her lungs and digestive system. We just know we'll start seeing improvement from all directions now. Let's pray that her intestines prove clear of obstruction so she can begin showing off her growing skills, as soon as possible!
Yesterday was my kangaroo time with Chloe. I was nervous about how she would tolerate it but, of course, she did awesome. She was at 30% on her oxygen settings when I got there but then they gave her to me and her saturation rose to 100%. They finally had to lower her O2 settings to 21%! Yes, that's room air thank you very much. AND she was satting at 95% at that! Made me feel like a total rock star. Yes, she knows I'm her Mommy.
Today is Dave's turn at kangaroo care. As a matter of fact, he's there as I type. Chloe had her pressure setting reduced today but I'm sure she's showing off for her Daddy the same way she did yesterday for me!
Dave and I think that her PDA surgery will help Chloe turn a corner. She should have improved blood flow to her lungs and digestive system. We just know we'll start seeing improvement from all directions now. Let's pray that her intestines prove clear of obstruction so she can begin showing off her growing skills, as soon as possible!
Friday, October 9, 2009
Day 47 - Recovering from Surgery
Chloe had a pretty quiet day today. They didn't make any changes on her respirator. She's resting and recovering from her surgery. Her contrast is still making its way out. It seems like it should have been passed by now but nobody seems worried about it. I'm told they'll probably do the upper GI contrast study at the beginning of next week. Until then - healing time...
Solana picked an interesting book for bedtime tonight. Here's a passage that really hit home. I'll try to keep this in mind when I feel particularly whiny:
When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!
Just tell yourself, Duckie,
you're really quite lucky!
Some people are much more...
oh, ever so much more...
oh, muchly much-much more
unlucky than you!
From "Did I Ever Tell You How Lucky You Are?" by Dr. Seuss
Solana picked an interesting book for bedtime tonight. Here's a passage that really hit home. I'll try to keep this in mind when I feel particularly whiny:
When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!
Just tell yourself, Duckie,
you're really quite lucky!
Some people are much more...
oh, ever so much more...
oh, muchly much-much more
unlucky than you!
From "Did I Ever Tell You How Lucky You Are?" by Dr. Seuss
Thursday, October 8, 2009
Day 46 - Surgery Update
The surgery went really well this morning. From the time they made the incision to the time the surgeon came out to see us was only 25 minutes! I'm pretty sure I wasn't holding my breath when he spoke to us but as soon as he walked away I exhaled a huge sigh of relief (figuratively AND literally)!
There were no complications, no blood loss, etc. and he put two clamps in her to close the PDA. She's been pretty sleepy all day. They're giving her some narcotic pain medicine to keep her comfortable. Her respiration seems good. Now we need to wait for her to recover and finish moving the contrast out of her body so they can do the next contrast study and get those feedings started.
Thank you all for your prayers and messages. Your love and support really does help me get through the day and means a lot! And I know Chloe can feel all your love flowing straight into her isolette each and every time you think of her!
Love to you all,
Cyndi
P.S. Dave and I are really missing our private room at Miami Valley. Maybe it wouldn't be so bad if the couple right next to us wasn't caughing all the time! The nurse said it had been addressed and they've been screened. It's only "smoker's cough" but geez people! (Sorry - I just had to vent...)
There were no complications, no blood loss, etc. and he put two clamps in her to close the PDA. She's been pretty sleepy all day. They're giving her some narcotic pain medicine to keep her comfortable. Her respiration seems good. Now we need to wait for her to recover and finish moving the contrast out of her body so they can do the next contrast study and get those feedings started.
Thank you all for your prayers and messages. Your love and support really does help me get through the day and means a lot! And I know Chloe can feel all your love flowing straight into her isolette each and every time you think of her!
Love to you all,
Cyndi
P.S. Dave and I are really missing our private room at Miami Valley. Maybe it wouldn't be so bad if the couple right next to us wasn't caughing all the time! The nurse said it had been addressed and they've been screened. It's only "smoker's cough" but geez people! (Sorry - I just had to vent...)
Wednesday, October 7, 2009
Day 45 - PDA
I don't even know what to write. I feel like I've been emotionally beat up like an old punching bag. They said the NICU would be a hard ride, a roller coaster, a long and difficult road. They really weren't exaggerating. Yesterday felt so good. Today feels just as bad.
Out of the blue...Chloe's PDA is "huge." She needs surgery on her heart. It will be tomorrow or the day after. Want to explain it...can't now.
Out of the blue...Chloe's PDA is "huge." She needs surgery on her heart. It will be tomorrow or the day after. Want to explain it...can't now.
Tuesday, October 6, 2009
Update - Kangaroo Time!
The update from this morning is: although I wasn't completely accurate this morning in my statement about "no surgery" things are still looking good.
The "study" they did on Chloe this morning involved a barium enema being forced up her rear and monitored using x-rays. The radiologist did not see a blockage caused by a narrowing of the intestines or by scar tissue from her earlier rupture. What she saw was some compacted poop that appeared to be blocking her intestines.
Upon speaking with the neonatologist early this afternoon I learned that we need to wait for Chloe to "move" her bowels and poop out all the barium from this morning's study so that they could proceed with the next study - another barium study but this time it will be placed in her stomach and watched on it's way down the intestines. It is possible that there may be a stricture in her small intestines that they couldn't see this morning but that they might see with the second study. Chloe needed to poop before they could do that and, fortunately, she had a big diaper full of poop when I changed her!
They did another x-ray after the poop and this time the surgeon took a look. And what he saw was probably the most encouraging thing today. He saw that the original barium enema went all the way up to her stomach! That's a great sign that could mean there is no blockage at all! Please keep praying that this is the case. They will move forward with the next barium study tomorrow and we want it to move from her stomach and all the way down her small and large intestines!
Once they verify the absence of blockage they can begin feedings. We really need Chloe to start eating so her poor liver can start healing and so she can start growing. Once she gets stronger and grows perhaps her lungs will get better. They're doing amazingly well right now because she's on steroids but they'll take her off of steroids pretty soon.
Picture of Chloe's ambulance on the way to Children's Medical Center this morning.
During her barium study this morning. Thank God for the steady and sure hands of the pediatric radiologist. I can't imagine the kind of control necessary to force fluid up and through the intestines of a 2lb 3oz baby without damaging them.
Walking quickly from radiology to the NICU - Chloe's new home.
The hospitals all have a new policy for the flu season. Only parents/grandparents are allowed to visit. No children. While this makes it more difficult for us to visit Chloe we're glad for the extra precautions against germs. Unfortunately, I couldn't be there this morning but my friend, Angela, watched Solana for several hours this afternoon, though, so I could stop by for a visit. Thank you Angela!
This visit turned out to be ridiculously exciting for me! The nurse let me have kangaroo time with Chloe for the first time! I almost cried when she offered. I ended up spending over an hour with my precious little miracle on my chest and she's already such a good little girl. She did just great for her Mommy! I can't even begin to describe how special that was. Instead, I'll share a picture.
The "study" they did on Chloe this morning involved a barium enema being forced up her rear and monitored using x-rays. The radiologist did not see a blockage caused by a narrowing of the intestines or by scar tissue from her earlier rupture. What she saw was some compacted poop that appeared to be blocking her intestines.
Upon speaking with the neonatologist early this afternoon I learned that we need to wait for Chloe to "move" her bowels and poop out all the barium from this morning's study so that they could proceed with the next study - another barium study but this time it will be placed in her stomach and watched on it's way down the intestines. It is possible that there may be a stricture in her small intestines that they couldn't see this morning but that they might see with the second study. Chloe needed to poop before they could do that and, fortunately, she had a big diaper full of poop when I changed her!
They did another x-ray after the poop and this time the surgeon took a look. And what he saw was probably the most encouraging thing today. He saw that the original barium enema went all the way up to her stomach! That's a great sign that could mean there is no blockage at all! Please keep praying that this is the case. They will move forward with the next barium study tomorrow and we want it to move from her stomach and all the way down her small and large intestines!
Once they verify the absence of blockage they can begin feedings. We really need Chloe to start eating so her poor liver can start healing and so she can start growing. Once she gets stronger and grows perhaps her lungs will get better. They're doing amazingly well right now because she's on steroids but they'll take her off of steroids pretty soon.
Picture of Chloe's ambulance on the way to Children's Medical Center this morning.
During her barium study this morning. Thank God for the steady and sure hands of the pediatric radiologist. I can't imagine the kind of control necessary to force fluid up and through the intestines of a 2lb 3oz baby without damaging them.
Walking quickly from radiology to the NICU - Chloe's new home.
The hospitals all have a new policy for the flu season. Only parents/grandparents are allowed to visit. No children. While this makes it more difficult for us to visit Chloe we're glad for the extra precautions against germs. Unfortunately, I couldn't be there this morning but my friend, Angela, watched Solana for several hours this afternoon, though, so I could stop by for a visit. Thank you Angela!
This visit turned out to be ridiculously exciting for me! The nurse let me have kangaroo time with Chloe for the first time! I almost cried when she offered. I ended up spending over an hour with my precious little miracle on my chest and she's already such a good little girl. She did just great for her Mommy! I can't even begin to describe how special that was. Instead, I'll share a picture.
Day 44 - No blockage or surgery
I usually post at night but this is just too good to wait. I want to let all of you praying geniuses out there that this morning went really well! They transported Chloe to Dayton Children's Hospital. The radiologist did the barium enema and watched it move through her intestines. She did NOT - I repeat - did NOT find scar tissue or a stricture in her intestines causing a blockage. What she found was some compacted poop. She was so certain that Chloe does NOT need surgery, in fact, that she was about to send her back to Miami Valley Hospital!
Dave had the head doctor over there get in touch with Chloe's doctor at Miami Valley, though, and they decided to keep her at Children's for the time being. They said that Chloe needs to poop and she's done that. They'll do another x-ray to see how things look and then the plan is to try feeding her again. I'll try to post again tonight!
Dave had the head doctor over there get in touch with Chloe's doctor at Miami Valley, though, and they decided to keep her at Children's for the time being. They said that Chloe needs to poop and she's done that. They'll do another x-ray to see how things look and then the plan is to try feeding her again. I'll try to post again tonight!
Monday, October 5, 2009
Day 43 - New Vent and...Pacifier!
The steroids seem to have worked for Chloe. They were able to wean her off the oscillator and put her on the conventional respirator today. She's been on the conventional for about two hours now and her O2 saturation is currently at 95% with her settings only in the 30's. This is pretty darn good. If she can maintain this then she'll be able to stay on the conventional. I've heard that some babies become "steroid dependant" but the doctor will wean her off the steroids instead of stopping cold turkey. Hopefully, this will prevent that.
Children's Hospital will pick her up for transport to some time after 7am tomorrow and take her straight to her barium enema - scheduled for 8am in the morning. Let's hope for the best possible outcome tomorrow.
In addition, Chloe is on medication for a yeast infection under her neck. This is common with premies. They live in a warm humid environment that's just perfect for yeast to take hold. She's receiving cream treatment to the site and medication. The combination of this medicine and steroids can be rough on her stomach so the doctor is giving her 1cc "feedings" just to coat and protect her stomach.
Finally, the doctor talked to me about Chloe's eyes today. She had her first scheduled eye exam this morning and they discovered some scar tissue in her eyes. They don't yet know what this will do to her vision, if anything, but want to do some tests and watch it.
Whew! Seems like there's a lot going on today. Just visiting with Chloe was eventful. When I got there she was laying on her back with a pacifier in her mouth and I could see her little tongue working to move it up and down. So cute! I had just barely put my hands in the isolette when my phone rang and I answered it so I was drying my hands from a "rewash" when Chloe's O2 saturation just plumeted from 95% to 50%. The nurse and I both jumped to look in the isolette and saw that Chloe was just fit to be tied. Her face was purple and all squinched up from crying and all four limbs were flailing like I'd never seen before. The nurse tried to tuck her arms and legs back in but that did no good what-so-ever so she ran out to get the respiratory therapist. I went to put my hands on Chloe and noticed the pacifier laying by her head. I quickly put it in her mouth and - VOILA! It was like magic! I could hardly believe it. She was actually throwing a fit because she'd lost her pacifier!
Now, this has ocurred to me before but never did I KNOW. At that moment I KNEWthat Chloe will be the most spoiled child this planet has ever seen. Making her happy by giving her the pacifier was probably the most gratifying thing I've ever done for her. How could I EVER tell her "no?" Solana's pacifiers went in the trash can the day she turned 2. Come back in two years to find out if I can do the same for Chloe...
By the way, most of you realize this but I should have explained something about the commercial I mentioned in yesterday's post.... Chloe's twin sister's name: Leila.
Children's Hospital will pick her up for transport to some time after 7am tomorrow and take her straight to her barium enema - scheduled for 8am in the morning. Let's hope for the best possible outcome tomorrow.
In addition, Chloe is on medication for a yeast infection under her neck. This is common with premies. They live in a warm humid environment that's just perfect for yeast to take hold. She's receiving cream treatment to the site and medication. The combination of this medicine and steroids can be rough on her stomach so the doctor is giving her 1cc "feedings" just to coat and protect her stomach.
Finally, the doctor talked to me about Chloe's eyes today. She had her first scheduled eye exam this morning and they discovered some scar tissue in her eyes. They don't yet know what this will do to her vision, if anything, but want to do some tests and watch it.
Whew! Seems like there's a lot going on today. Just visiting with Chloe was eventful. When I got there she was laying on her back with a pacifier in her mouth and I could see her little tongue working to move it up and down. So cute! I had just barely put my hands in the isolette when my phone rang and I answered it so I was drying my hands from a "rewash" when Chloe's O2 saturation just plumeted from 95% to 50%. The nurse and I both jumped to look in the isolette and saw that Chloe was just fit to be tied. Her face was purple and all squinched up from crying and all four limbs were flailing like I'd never seen before. The nurse tried to tuck her arms and legs back in but that did no good what-so-ever so she ran out to get the respiratory therapist. I went to put my hands on Chloe and noticed the pacifier laying by her head. I quickly put it in her mouth and - VOILA! It was like magic! I could hardly believe it. She was actually throwing a fit because she'd lost her pacifier!
Now, this has ocurred to me before but never did I KNOW. At that moment I KNEWthat Chloe will be the most spoiled child this planet has ever seen. Making her happy by giving her the pacifier was probably the most gratifying thing I've ever done for her. How could I EVER tell her "no?" Solana's pacifiers went in the trash can the day she turned 2. Come back in two years to find out if I can do the same for Chloe...
By the way, most of you realize this but I should have explained something about the commercial I mentioned in yesterday's post.... Chloe's twin sister's name: Leila.
Sunday, October 4, 2009
Day 42 - Milk Didn't Take
Well, they gave Chloe a chance to show us that she doesn't have an obstruction or narrowing. She gave a valiant effort but just couldn't do it.
They took her off milk again on Friday night and started her on some steroids Saturday. The hope is that the steroids improve her lungs enough to take her off the oscillator. Once she's off the oscillator and stable enough for transport she will be moved to Dayton Children's Hospital. We think that may happen Monday evening. There they will use pressure to move some fluid through her intestines backward (ie. from the rear) in an attempt to locate an obstruction or narrowing. Hopefully, it's something as simple as a bit of meconium blockage that is removed/corrected with the procedure. If it's a blockage created by scar tissue (from her original rupture) then they'll need to do surgery to remove the section of blocked intestine. I trust you can guess which one we're hoping and praying for.
As we're preparing for this move we saw our first commercial for Dayton Children's Hospital. The commercial began with the name "Layla" scripted on the screen and then shows a baby and her mother. The mother spoke emotionally about how Layla was born very early and spend 101 days in the NICU. If it weren't for the amazing care they offered and the fact that surgeons were on hand and prepared to give Layla the care she needed she wouldn't be here today. Weird, huh? It almost seemed like a sign for us to feel good about this move...
They took her off milk again on Friday night and started her on some steroids Saturday. The hope is that the steroids improve her lungs enough to take her off the oscillator. Once she's off the oscillator and stable enough for transport she will be moved to Dayton Children's Hospital. We think that may happen Monday evening. There they will use pressure to move some fluid through her intestines backward (ie. from the rear) in an attempt to locate an obstruction or narrowing. Hopefully, it's something as simple as a bit of meconium blockage that is removed/corrected with the procedure. If it's a blockage created by scar tissue (from her original rupture) then they'll need to do surgery to remove the section of blocked intestine. I trust you can guess which one we're hoping and praying for.
As we're preparing for this move we saw our first commercial for Dayton Children's Hospital. The commercial began with the name "Layla" scripted on the screen and then shows a baby and her mother. The mother spoke emotionally about how Layla was born very early and spend 101 days in the NICU. If it weren't for the amazing care they offered and the fact that surgeons were on hand and prepared to give Layla the care she needed she wouldn't be here today. Weird, huh? It almost seemed like a sign for us to feel good about this move...
Friday, October 2, 2009
Day 40 - Still trying waiting trying
I usually lay with Solana for a few minutes each night before she falls asleep and, apparently, fell asleep in her bed last night. I woke up at 2am and my throbbing chest told me I'd missed an appointment with the pump. That was my first stop on the way back to bed.
You can see that her belly looks really distended here. This is partially because of her dilated bowels but also because of her enlarged liver - enlarged because of the IV nutrition she's been on for 5 weeks. She's up to 2lbs 5oz now. And look at those beautiful eyes. This picture was taken right after a sponge bath.
My second stop was to call to check up on Chloe and this is what I found: Feedings every three hours were too much for her system because they started pulling up milk and decided to stop feedings. Yikes! Needless to say I didn't get right back to sleep. I had a bit of worrying and praying to do...
But during rounds today the doctor decided to start feedings every six hours again and administer a glycerine enema. The hope is that, if her system is just slow, the enema will get her system "moving." It produced a big meconium movement right away and another smaller one at 6pm. We're really hoping that this helps because they also pulled up some milk during her 6pm feeding. We still don't know if there's an obstruction in her intestines. If only this milk will get digesting so that we can determine there isn't one...
Please pray for Chloe.
You can see that her belly looks really distended here. This is partially because of her dilated bowels but also because of her enlarged liver - enlarged because of the IV nutrition she's been on for 5 weeks. She's up to 2lbs 5oz now. And look at those beautiful eyes. This picture was taken right after a sponge bath.
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