Today was one giant bag full of mixed emotions for me.
Chloe went down for her eye exam under anesthesia this morning. Same drill as last week. They rolled her down to the OR. Surgeon came out to tell me he'd take a look and then return to tell me his findings before proceeding with any surgery. He went in. After 10-15 minutes he returned to tell me that Chloe does not need surgery today. The blood in her left is has pretty much cleared away and neither retina has detached. We can go home. Yeah! Then he starts talking about about some pigment discoloration he found and Chloe's future vision impairments. We can't know for another few years what her vision impairment will be so I will choose not to worry about that right now. There's nothing we can do about it, anyway. Chloe is still at risk for retinal detachment for another 11 weeks so she'll get weekly eye exams. Fortunately, those can take place at home.
Last week the anesthesiologist also spoke to us before Chloe's eye exam. That didn't happen this week but I wasn't too concerned since she was undergoing the same procedure. They would just give her some gas to calm her. They wouldn't put her under or intubate her unless they decided to do surgery.
So how surprised was I to arrive upstairs at the NICU to find Chloe intubated and breathing on a ventillator after her 15 minute eye exam? Very. In fact, I was pretty horrified and scared. I started having flashbacks to her oh-so-recent life on the ventillator and the tears started flowing. I ask the nurse the obvious, "They intubated her? I thought they were just giving her gas." The nurse saw my obvious distress and kindly explained that they gave Chloe the same stuff that Michael Jackson took. You know, the stuff that killed him? People have varied reactions to it so that's why anesthesiologists have to be on hand to monitor the situation. Chloe Brady'd and Desatted so they had to intubate her. "Oh." Poor lady. I'm pretty sure she was actually trying to comfort me. (I laugh now.)
She assured me that she'd take Chloe off the vent soon. Like, as soon as she wakes up. Great! I'm thinking that's within the next hour. This is 8:30am. I then proceeded to stand and/or sit staring at Chloe for the next 5 hours (with one 30 min. break to pump) before I finally had to go get my first meal of the day. I came back, pumped again, and they finally extubated her at 3:30. Oh my gosh that felt like forever! Apparently, Chloe has a very strong reaction to anesthesia. During this time I managed to complain to a couple of people.
An hour or so after she's extubated I'm pretty much over the whole thing. Chloe is in my arms breathing like a champ and finally getting some milk. My world is at peace once again. That's when the surgeon comes in because they told him I was upset. I was glad to have the opportunity to talk to him - even if it was after I'd calmed down and had Chloe in my arms. At least I was heard (even if he didn't "hear" me). He's the big cheese and actually feel lucky that a world renowned surgeon looked at Chloe's eyes. Then the charge nurse gave me $15 in gift shop coupons because she felt bad. That was totally unnecessary but I didn't turn them down :-)
I chatted with the super nice lactation nurse about nippling and am getting excited about starting that. And ended the evening holding Chloe for another two hours. We're both so spoiled now! I finally said "goodbye" to Chloe's night nurse who she had for (count 'em) 6 nights straight! Yes, that's on 12 hour shifts. What a freak streak of luck we had on that one! We've NEVER had the same nurse for 6 straight days! And, on top of that, I liked her a lot. We're in a strange hospital. We don't know anyone. It was such a comfort to have the same nurse (and a good one at that) watching over her for almost a week straight.
Now I'm off to bed in my little apartment. This week went well, I think. No bad taste left in my mouth from this place. But Michigan oh Michigan. I will miss thee not.
Monday, November 30, 2009
Sunday, November 29, 2009
Day 98 - OR tomorrow
Chloe heads down to the OR tomorrow (Monday) morning at 7:30am ET. They'll stop her feedings at 1:30am this morning so she'll be really hungry and grumpy by the time they get her down there. They'll give her an IV and fluids. Hopefully, that'll help her feel a little more comfortable but I'm sure not enough - poor baby.
Please pray for her. We want them to see improvement on her eyes. Maybe they'll send us home (back to Dayton Children's, that is)...
Please pray for her. We want them to see improvement on her eyes. Maybe they'll send us home (back to Dayton Children's, that is)...
Saturday, November 28, 2009
Thanksgiving Pictures
Chillaxin'. This picture was actually taken Monday or Tuesday, before they put her back into an isolette.
At the parade. We were pretty bundled up. It's COLD in Detroit!
Cheryl Burke from DWTS.
Evan from SYTYCD Season 5. He was totally waving to me.
Dave, My Dad, and Solana are waving to Santa at the end of the parade. We actually started heading back early so we caught him while his float was still parked and getting ready to go.
Our classy Thanksgiving table settings. Yes, that's wine in my tumbler. :-)
Showing of my uber-cheesy smile-for-the-camera skills...
I learned it from my dad! :-D
Ready to eat!
Chloe likes to be swaddled.
She's supposed to be laying on the little pillow in the foreground (with the colorful hearts) but insists on rolling off of it. Her nurse rolled up that diaper to act like a bumper but it didn't work. Chloe makes herself comfortable.
Chloe cracked us up immediately after kangaroo care tonight. Her nurse and I worked really hard to get her back into her isolette without disturbing her. Based on the amount of drool I think we succeeded!
Day 97 - Doing Well at Beaumont
Chloe had a pretty quiet day today. I spoke to the neonatologists during rounds last night because it seemed like she was getting hungry right before her feedings. Maybe she needs more food? They must have agreed with me because they increased her feedings just a bit. I really think it helped. She wasn't nearly as fussy today as yesterday. She really is becoming a big girl, though. She needs her food to feed her big growing body. Guess how big she is.
3 pounds 10 ounces! Haha! She seems to be having a growth spurt this week! And I think it's especially shocking because she was weaned (pretty dramatically, I think) on her canula support.
Speaking of canula support...I think I mentioned that I've been a bit worried about her breathing over the past couple of days. It appears as though she's working harder. The neonatologist last night seemed comfortable with her effort. (And although he seemed slightly pompass to me, Chloe's nurse says he's her favorite. I really like her nurse so that gives him some street cred.) He also pointed out that 40% O2 setting on a 1.5 liter canula (what she's on now) is actually LESS O2 support than she was needing on her high flow! (It's a bit counterintuitive since her O2 was set at 25-30% but if you think about it - the "high flow" is giving her more air, thus, more O2). She actually looked a little more comfortable today than she did yesterday, too, so I hope she's just getting stronger.
So far I've held Chloe for 4 hours a day two days in a row! It's heaven! Two hours bundled up and two hours kangaroo. She had a hard time during kanga care last night. I think she was tired. Her oxengen setting was way up. But she did great tonight!
I took a dinner break around 4pm and went for a jog around the hospital. I figured 10 hours a day at Chloe's bedside isn't doing any favors to my rear end. I STILL can't fit into my regular pants! Bad, I know. Maybe I need to set a goal for myself and announce it to all my blog friends. So here I go. I will fit into my skinny jeans by the time Chloe comes home. It'll be like my pre-New Year's resolution! So back to my jog. Picture this. Michigan in November. It's cold. Me in black stretch pants, T-shirt, black ski cap, and sunglasses. I'm feeling really cool - like a real runner! It's 4pm so the sun is on its way down and I'm casting a shadow. I look over and see my jogging shadow. Is that me?!? My gait looks like an old lady speed walking! Not feeling so cool anymore! ;-) But at least I try, right? Hehe.
3 pounds 10 ounces! Haha! She seems to be having a growth spurt this week! And I think it's especially shocking because she was weaned (pretty dramatically, I think) on her canula support.
Speaking of canula support...I think I mentioned that I've been a bit worried about her breathing over the past couple of days. It appears as though she's working harder. The neonatologist last night seemed comfortable with her effort. (And although he seemed slightly pompass to me, Chloe's nurse says he's her favorite. I really like her nurse so that gives him some street cred.) He also pointed out that 40% O2 setting on a 1.5 liter canula (what she's on now) is actually LESS O2 support than she was needing on her high flow! (It's a bit counterintuitive since her O2 was set at 25-30% but if you think about it - the "high flow" is giving her more air, thus, more O2). She actually looked a little more comfortable today than she did yesterday, too, so I hope she's just getting stronger.
So far I've held Chloe for 4 hours a day two days in a row! It's heaven! Two hours bundled up and two hours kangaroo. She had a hard time during kanga care last night. I think she was tired. Her oxengen setting was way up. But she did great tonight!
I took a dinner break around 4pm and went for a jog around the hospital. I figured 10 hours a day at Chloe's bedside isn't doing any favors to my rear end. I STILL can't fit into my regular pants! Bad, I know. Maybe I need to set a goal for myself and announce it to all my blog friends. So here I go. I will fit into my skinny jeans by the time Chloe comes home. It'll be like my pre-New Year's resolution! So back to my jog. Picture this. Michigan in November. It's cold. Me in black stretch pants, T-shirt, black ski cap, and sunglasses. I'm feeling really cool - like a real runner! It's 4pm so the sun is on its way down and I'm casting a shadow. I look over and see my jogging shadow. Is that me?!? My gait looks like an old lady speed walking! Not feeling so cool anymore! ;-) But at least I try, right? Hehe.
Hospital Differences
Chloe is currently at her third (and hopefully last) new hospital. I have been amazed to learn how controversial the science of neonatology is! The philosophies from one hospital to another, I believe, are basically the same but many of the practical things are quite different. It takes some getting used to. Here are just a few differences I've noted between Dayton and Beaumont:
D: Snoodles are given to the parents to wear inside their shirt. Once they smell like us we can put them in the bed to comfort the babies. (Note: I have not worn perfume since before Chloe was born.)
B: Plush "dolls" are not allowed inside the bed because they might have germs.
D: Chloe spends a lot of time on her belly because she breathes better that way. The nurses make sure to rotate her, though, to give her a nice shaped head.
B: All babies of 32week gestation go-on-their-backs! No exceptions! (Except for Chloe because she's not from around these parts...) The thought is that the babies need to sleep on their backs when they get home so let's get them used to it now (while they're being monitored.)
D: I heard a lot more reference to Chloe's weight as her milestone guideline. For example, she can wear clothes and begin weaning from her isolette when she's 1800grams.
B: They put her in clothes and started weaning her from her isolette immediately upon arrival because she's "old."
D: Chloe is treated like a fragile micro-premie. The nurses do most of her handling and care (with exception of the ocasional diaper change/temperature getting by me).
B: Chloe is already 38 weeks? She's a "big girl." Mommy (that's me) is strongly encouraged to do stuff for her like: dress her, diapers, temperature, suction her mouth, weigh her (unassisted), take her out of and put her back alone, etc. And I could see Chloe's nurse laughing at me (on the inside) when I put up her "Bone Fracture Risk" sign on her isolette. She didn't say anything, though, so I'm thankful that she humors me.
D: Chloe's isolette was always covered so she slept in a dark quiet environment.
B: The lights are always bright and we can't cover her isolette (for safety - they can get a visual of her more quickly).
D: The panic alarm on her monitor seemed to be set at more extreme levels. It would only go off if she was really bad off. If the panic alarm went off nurses would come running (literally) from all directions.
B: The panic alarm goes off much more quickly (for less drastic reasons) and, consequently, the nurses don't come running.
D: We're all in one big room. There are probably about 20 babies and 10 nurses buzzing around at all times.
B: We're in a pod. There are only six babies and two nurses (unless one goes to lunch and then there's one).
D: Chloe was on the high flow canula.
B: They don't believe in the high flow because they can't tell the exact pressure she's getting from it. (This is probably the main philosophical difference I've observed.)
There are some things I prefer at each hospital. For example, the forcing of Mommy (ie. me) to do more for Chloe is really empowering. I feel more like an actual Mommy and less like an observer. Of course, it may just be the forceful (in a good way) nature of the nurses we got. Our Dayton nurses are way too nice so they may have just been unwittingly enabling me and my paranoid fearful self. And I love that I can cradle her in my arms and stare at her face for hours on end. The part about the panic alarm freaks me out, though. I know that she's just fine but it still freaks me out. Anyway, there's no particular reason for this post. These are just some interesting observations I thought I'd share...
D: Snoodles are given to the parents to wear inside their shirt. Once they smell like us we can put them in the bed to comfort the babies. (Note: I have not worn perfume since before Chloe was born.)
B: Plush "dolls" are not allowed inside the bed because they might have germs.
D: Chloe spends a lot of time on her belly because she breathes better that way. The nurses make sure to rotate her, though, to give her a nice shaped head.
B: All babies of 32week gestation go-on-their-backs! No exceptions! (Except for Chloe because she's not from around these parts...) The thought is that the babies need to sleep on their backs when they get home so let's get them used to it now (while they're being monitored.)
D: I heard a lot more reference to Chloe's weight as her milestone guideline. For example, she can wear clothes and begin weaning from her isolette when she's 1800grams.
B: They put her in clothes and started weaning her from her isolette immediately upon arrival because she's "old."
D: Chloe is treated like a fragile micro-premie. The nurses do most of her handling and care (with exception of the ocasional diaper change/temperature getting by me).
B: Chloe is already 38 weeks? She's a "big girl." Mommy (that's me) is strongly encouraged to do stuff for her like: dress her, diapers, temperature, suction her mouth, weigh her (unassisted), take her out of and put her back alone, etc. And I could see Chloe's nurse laughing at me (on the inside) when I put up her "Bone Fracture Risk" sign on her isolette. She didn't say anything, though, so I'm thankful that she humors me.
D: Chloe's isolette was always covered so she slept in a dark quiet environment.
B: The lights are always bright and we can't cover her isolette (for safety - they can get a visual of her more quickly).
D: The panic alarm on her monitor seemed to be set at more extreme levels. It would only go off if she was really bad off. If the panic alarm went off nurses would come running (literally) from all directions.
B: The panic alarm goes off much more quickly (for less drastic reasons) and, consequently, the nurses don't come running.
D: We're all in one big room. There are probably about 20 babies and 10 nurses buzzing around at all times.
B: We're in a pod. There are only six babies and two nurses (unless one goes to lunch and then there's one).
D: Chloe was on the high flow canula.
B: They don't believe in the high flow because they can't tell the exact pressure she's getting from it. (This is probably the main philosophical difference I've observed.)
There are some things I prefer at each hospital. For example, the forcing of Mommy (ie. me) to do more for Chloe is really empowering. I feel more like an actual Mommy and less like an observer. Of course, it may just be the forceful (in a good way) nature of the nurses we got. Our Dayton nurses are way too nice so they may have just been unwittingly enabling me and my paranoid fearful self. And I love that I can cradle her in my arms and stare at her face for hours on end. The part about the panic alarm freaks me out, though. I know that she's just fine but it still freaks me out. Anyway, there's no particular reason for this post. These are just some interesting observations I thought I'd share...
Friday, November 27, 2009
Day 96 - Thanksgiving Update
So much has happened the last few days I'm not sure I know where to start! I imagine that I should be writing a post declaring all the things I'm grateful for but I'm not going to. I did a bit of that at Thanksgiving dinner and started crying so I think my heartfelt Thanksgiving speech is already out of my system. Fortunately, for everyone else, only my parents, Dave, and Solana had to endure it ;-)
I think I'll just give the usual update. Tuesday through today (Friday) have been fairly uneventful. Chloe's been doing pretty well on her 1.5liter canula. She was working harder to breathe last night so they did a blood gas (this is a test that has been done on her at least a hundred times and involves a heel prick so they can get a small amount of blood to test levels of gasses [like CO2] in her blood) and a chest x-ray. They had talked about putting her back on CPAP but decided to just keep an eye on her. She's still working a bit harder today than she was before last night but not enough for them to make any changes, yet. Praying that her breathing gets easier for her...
Chloe has a big belly. It always looks like a poochy puppy belly and we've been keeping a close eye on it since her little event on Monday. Dave and I keep asking for poop reports when we're not at her bedside and all the nurses know that we worry about her her digestion. I discovered that Chloe has her own personal baby-style sense of humor about this, which makes me really happy. Twice, we've gone to change her diaper and it's turned into a four diaper extravaganza! Each time we pull the dirty one away she immediately dirties up the new one! Fortunately for me, I make sure to have a new diaper under the dirty one before pulling the dirty one away. If not, I'd have had to change a lot of linens lately! And the whole time Chloe seems as pleased as can be, like she's saying, "You wanted poop Mommy. Here it is!"
Chloe's eyes are still doing well. She's had two bedside examinations since Monday and they tell us that her eyes look, "not too bad." There's still a little blood but definitely less. We want the blood to go away because it can supposedly feed scar tissue and scar tissue pulls at the retina. Both retinas are still attached, though, and that's great! She's still scheduled for her exam under anesthesia in the OR. Monday is our big day. Oh, and I learned today that we're not in the clear from retinal detachment until 10 weeks after her due date - that means 12 more weeks of regular eye exams before we can really breathe a sigh of relief. Poor baby. Those eye exams are brutal.
I also learned that Chloe has had one and possibly two rib fractures in her life. I don't think I knew that but the nurse practitioner pointed it/them out to me last night on her x-rays. We had a whole conversation about how thin Chloe's bones are and how that is really common for micro-premies. (It was really kind of scary to see the thin whispy white lines, that are her ribs, on the x-ray.) I honestly can't remember if I knew about her old rib fracture. Suddenly, it occurs to me that never in my life could I have anticipated a time when my child would be so sick that a rib fracture would be a minor thing that I quickly filed away and forgot about. How crazy my frame of reference has become... Soon enough this will all be a memory and Chloe will be home with us. And I'll be so consumed with her new antics that I'll have to consult my nifty thrifty journal to remember everything from her NICU days...
That's about it for Chloe's update.
My parents and Solana drove up here from Dayton on Wednesday and my mom got to hold Chloe again. She loved it and was terrified at the same time. Chloe kept gagging on her feeding tube and spitting up bits of milk while he held her so I'm sure that didn't help her nerves. I was pumping and my dad fell asleep in his chair, tired after driving from Dayton. My poor mom. She survived, though, and was happy that Chloe kept smiling at her. Chloe LOVES when we baby talk and sing to her. My mom's good at that.
We got up early Thursday morning and attended the America's Thanks giving Day parade in Detroit. (We'll likely never be in Detroit for another Thanksgiving so we decided to check it out.) Solana wasn't sure about it at first but then got into it when they started throwing candy from the floats. It was lots of fun but COLD! After the parade we split up. My mom and I were dropped off at the hospital while Dave, my Dad, and Solana checked out of their hotel and picked up our food from Kroger. We ordered a fancy schmancy "Fully Cooked" Thanksgiving feast from Kroger. We scheduled our pickup for noon and timed it just perfectly so that Dave could pick up the food right at noon. After getting the food he swung by the hospital to pick us up. We were huuungry! But as we got in the car I noticed there wasn't a food smell... Dave pointed out that the food was in the back. Hmmm. Ok. We got home and opened our big box to find our fully cooked meal to be a fully...REFRIGERATED meal! What?!? The turkey was wrapped up like they are when they're raw and had to be baked for two hours! Seriously, though, how lame is that? We all thought it would be hot from the deli. It was all pre-packaged stuff. We could have just bought all that stuff off the shelves. Oh well. We pigged out on pistachios while we waited and my mom and I ran back to the store for green bean casserole ingredients since there were no veggies in the meal. Fortunately, we were in the apartment so we actually had a kitchen and utensils, cookware, etc. In the end we had a really nice Thanksgiving dinner, all things considered. Certainly not the Thanksgiving we intended but we were together and that made it good.
They all left back to Dayton a few hours later. Chloe and I are on our own in Michigan. We snuggled for a few hours last night and again today. She's going to be so spoiled after this week! In fact, I'm about to get my clothes out of the dryer and head back to the hospital for another snuggle with my girl.
Wishing you a Happy Thanksgiving weekend!
I think I'll just give the usual update. Tuesday through today (Friday) have been fairly uneventful. Chloe's been doing pretty well on her 1.5liter canula. She was working harder to breathe last night so they did a blood gas (this is a test that has been done on her at least a hundred times and involves a heel prick so they can get a small amount of blood to test levels of gasses [like CO2] in her blood) and a chest x-ray. They had talked about putting her back on CPAP but decided to just keep an eye on her. She's still working a bit harder today than she was before last night but not enough for them to make any changes, yet. Praying that her breathing gets easier for her...
Chloe has a big belly. It always looks like a poochy puppy belly and we've been keeping a close eye on it since her little event on Monday. Dave and I keep asking for poop reports when we're not at her bedside and all the nurses know that we worry about her her digestion. I discovered that Chloe has her own personal baby-style sense of humor about this, which makes me really happy. Twice, we've gone to change her diaper and it's turned into a four diaper extravaganza! Each time we pull the dirty one away she immediately dirties up the new one! Fortunately for me, I make sure to have a new diaper under the dirty one before pulling the dirty one away. If not, I'd have had to change a lot of linens lately! And the whole time Chloe seems as pleased as can be, like she's saying, "You wanted poop Mommy. Here it is!"
Chloe's eyes are still doing well. She's had two bedside examinations since Monday and they tell us that her eyes look, "not too bad." There's still a little blood but definitely less. We want the blood to go away because it can supposedly feed scar tissue and scar tissue pulls at the retina. Both retinas are still attached, though, and that's great! She's still scheduled for her exam under anesthesia in the OR. Monday is our big day. Oh, and I learned today that we're not in the clear from retinal detachment until 10 weeks after her due date - that means 12 more weeks of regular eye exams before we can really breathe a sigh of relief. Poor baby. Those eye exams are brutal.
I also learned that Chloe has had one and possibly two rib fractures in her life. I don't think I knew that but the nurse practitioner pointed it/them out to me last night on her x-rays. We had a whole conversation about how thin Chloe's bones are and how that is really common for micro-premies. (It was really kind of scary to see the thin whispy white lines, that are her ribs, on the x-ray.) I honestly can't remember if I knew about her old rib fracture. Suddenly, it occurs to me that never in my life could I have anticipated a time when my child would be so sick that a rib fracture would be a minor thing that I quickly filed away and forgot about. How crazy my frame of reference has become... Soon enough this will all be a memory and Chloe will be home with us. And I'll be so consumed with her new antics that I'll have to consult my nifty thrifty journal to remember everything from her NICU days...
That's about it for Chloe's update.
My parents and Solana drove up here from Dayton on Wednesday and my mom got to hold Chloe again. She loved it and was terrified at the same time. Chloe kept gagging on her feeding tube and spitting up bits of milk while he held her so I'm sure that didn't help her nerves. I was pumping and my dad fell asleep in his chair, tired after driving from Dayton. My poor mom. She survived, though, and was happy that Chloe kept smiling at her. Chloe LOVES when we baby talk and sing to her. My mom's good at that.
We got up early Thursday morning and attended the America's Thanks giving Day parade in Detroit. (We'll likely never be in Detroit for another Thanksgiving so we decided to check it out.) Solana wasn't sure about it at first but then got into it when they started throwing candy from the floats. It was lots of fun but COLD! After the parade we split up. My mom and I were dropped off at the hospital while Dave, my Dad, and Solana checked out of their hotel and picked up our food from Kroger. We ordered a fancy schmancy "Fully Cooked" Thanksgiving feast from Kroger. We scheduled our pickup for noon and timed it just perfectly so that Dave could pick up the food right at noon. After getting the food he swung by the hospital to pick us up. We were huuungry! But as we got in the car I noticed there wasn't a food smell... Dave pointed out that the food was in the back. Hmmm. Ok. We got home and opened our big box to find our fully cooked meal to be a fully...REFRIGERATED meal! What?!? The turkey was wrapped up like they are when they're raw and had to be baked for two hours! Seriously, though, how lame is that? We all thought it would be hot from the deli. It was all pre-packaged stuff. We could have just bought all that stuff off the shelves. Oh well. We pigged out on pistachios while we waited and my mom and I ran back to the store for green bean casserole ingredients since there were no veggies in the meal. Fortunately, we were in the apartment so we actually had a kitchen and utensils, cookware, etc. In the end we had a really nice Thanksgiving dinner, all things considered. Certainly not the Thanksgiving we intended but we were together and that made it good.
They all left back to Dayton a few hours later. Chloe and I are on our own in Michigan. We snuggled for a few hours last night and again today. She's going to be so spoiled after this week! In fact, I'm about to get my clothes out of the dryer and head back to the hospital for another snuggle with my girl.
Wishing you a Happy Thanksgiving weekend!
Monday, November 23, 2009
Michigan Pictures
Chloe with her CPAP.
Her new diggs. The bed is heated because she still needs help maintaining her temperature.
Getting ready to head down to surgery.
We raced to the hospital because they wanted to get her down to surgery earlier than originally planned and then we ended up standing around waiting for the surgeons to call us down. This photograph is my attempt at creativity while we waited. Don't laugh. I'm actually proud of myself! :-)
Chloe burrito.
I love burritos...
Girl Talk.
Notice the absence of her CPAP. Yes!
Wooing Daddy and simultaneously throwing her first Hook'Em.
I think Dave was a little nervous because he couldn't see the monitor from his seat.
Day 92 - Happy 3 Month Birthday, Chloe!
Sorry for the belated post. As you all probably assumed, this has been a crazy couple of days. Dave and I got to Dayton Children's just after 6am Sunday morning and waited around while Chloe and all of her assorted paraphernalia was arranged and loaded into the ambulance. I was less than thrilled with the start to the morning when Chloe's NG (feeding) tube was accidentally yanked out of her nose. Not cool. ANYWAY, the tube was reinserted and we were soon on our way. Chloe rode in style in her mobile isolette. She was upset for about the first hour of transport until the nurse turned her on her belly. Then she finally fell asleep.
We arrived at William Beaumont Medical Center and went straight to the NICU to get Chloe all set up. Our first impressions of the hospital were: -It's a HUGE campus! and -Fancy :-) This place is really really nice. After traveling 3 1/2 hours to a new hospital it sure is nice to end up at a beautiful one. Then we see Chloe's space and are quickly reminded that all hospitals are very different. Chloe's not in her giraffe isolette. She's in an open bed. WEIRD to see her so exposed! Plus, they don't use high flow cannulas here. They have her on another machine called "CPAP." I don't particularly care for it because it's a much larger apparatus and really restricts her movement. But it's supposed to be a gentle form of breathing assistance that blows humidified air in through her nose and just helps her keep her little lung pockets open. Chloe had a hard time staying still and the longer/wider prongs kept getting shoved too far up her nose with her movement. :-(
Around 4pm, an eye doctor came to do an ultrasound on Chloe's left eye (the bad/bloody one) and told us that the retina was flat and attached! Great news! He would study the ultrasound pictures with the surgeon in preparation for Monday morning. He also prescribed some pressure-relieving eye drops for Chloe because she had some pressure in her right eye that would make it difficult (or impossible) to do the vatrectomy. Hopefully, the drops would start working before the morning.
We were very relieved after the ultrasound but it was sort of a difficult evening for Chloe because of all the changes. One of the nurses helped me swaddle her and she seemed to like that - finally calming down to rest. After four hours of sleep the night before and an early morning I called it a night around 9pm and went to our little apartment to pump and get some sleep.
I woke up about 5 times last night (scared of missing the alarm and Chloe's 7:30am procedure time) but luckily was able to get back to sleep each time. I got up early, pumped, and showered. While I was in the shower Dave called and was told that they would take Chloe down to surgery at 7am, instead of 7:30! Yikes! That was in 35 minutes! Fortunately, I have completely forsaken all beautification rituals over the past month and can get ready in 10 minutes flat! We arrived at the hospital just before 7am and Chloe was, once again, placed in a mobile isolette. She was taken down to surgery and we met with the surgeon and anesthesiologist. They both seemed really nice and explained everything. They didn't even seem annoyed at my million questions :-) The surgeon would first do an examination of Chloe's eyes and then report to us before beginning any procedures. Just as Dave and I were settling into the family waiting room the surgeon came out.
He reported the following:
Right Eye (the good one): The "bad" blood vessels in the front and back of the eye had dissipated thanks to the original surgery. The retina is in good shape. He said that he could see the lasering from her surgery and that it was a job well done.
Left Eye (the bad one): The "bad" blood vessels in the front of the eye had dissipated thanks to the original surgery. The retina is flat and NOT detached. In addition, the pressure-relieving drops given overnight helped. He would NOT do a vatrectomy to clear out the blood because he thinks that, with a little more time, the blood will all clear out on its own. He will watch her eyes bedside this week and do another big examination next Monday. But based on everything else he saw, he expects to see that the back of the left eye will look good, too! Bottom line: NO SURGERY TODAY AND (HE EXPECTS) NO SURGERY NEXT WEEK!!!!
This is way better news than we expected! I feel like I just had a year's worth of blessings in one day. :-) We definitely have a lot to be thankful for this year! And what a great 3 month birthday present for Chloe!
Today she is:
3 months old
38 weeks gestation
approx. 3 pounds 5 ounces
After lunch and some grocery shopping to stock up my new little kitchen we returned for a little scare. We walked in to see Chloe's HUGE distended belly! They had restarted her IV fluids and stopped her feeds because she didn't seem to tolerate her first feeding. After all the feeding problems she had in the past this was slightly frightening. They skipped her next feeding but then decided to start her again as we arrived. The neonatologist thinks she was swallowing a lot of air because of the CPAP and decided to try her on the cannula. This is not the "high flow" cannula. It's just "off the wall," which means less pressure/support. I sure hope she does well on it. It's so much more comfortable for her and it's a step in the right direction. The next step after this is completely breathing on her own! (Theoretically)
Dave and I both got to hold her during this feeding, which I think made her really happy. She's getting 30cc's over two hours with an hour break before her next feeding. They checked her belly after her hour break and it was empty. Whew! (Plus, she farted a lot while we held her - getting some of that excess gas out!)
If all goes well we might leave here in a week or so! Fingers crossed!!!
We arrived at William Beaumont Medical Center and went straight to the NICU to get Chloe all set up. Our first impressions of the hospital were: -It's a HUGE campus! and -Fancy :-) This place is really really nice. After traveling 3 1/2 hours to a new hospital it sure is nice to end up at a beautiful one. Then we see Chloe's space and are quickly reminded that all hospitals are very different. Chloe's not in her giraffe isolette. She's in an open bed. WEIRD to see her so exposed! Plus, they don't use high flow cannulas here. They have her on another machine called "CPAP." I don't particularly care for it because it's a much larger apparatus and really restricts her movement. But it's supposed to be a gentle form of breathing assistance that blows humidified air in through her nose and just helps her keep her little lung pockets open. Chloe had a hard time staying still and the longer/wider prongs kept getting shoved too far up her nose with her movement. :-(
Around 4pm, an eye doctor came to do an ultrasound on Chloe's left eye (the bad/bloody one) and told us that the retina was flat and attached! Great news! He would study the ultrasound pictures with the surgeon in preparation for Monday morning. He also prescribed some pressure-relieving eye drops for Chloe because she had some pressure in her right eye that would make it difficult (or impossible) to do the vatrectomy. Hopefully, the drops would start working before the morning.
We were very relieved after the ultrasound but it was sort of a difficult evening for Chloe because of all the changes. One of the nurses helped me swaddle her and she seemed to like that - finally calming down to rest. After four hours of sleep the night before and an early morning I called it a night around 9pm and went to our little apartment to pump and get some sleep.
I woke up about 5 times last night (scared of missing the alarm and Chloe's 7:30am procedure time) but luckily was able to get back to sleep each time. I got up early, pumped, and showered. While I was in the shower Dave called and was told that they would take Chloe down to surgery at 7am, instead of 7:30! Yikes! That was in 35 minutes! Fortunately, I have completely forsaken all beautification rituals over the past month and can get ready in 10 minutes flat! We arrived at the hospital just before 7am and Chloe was, once again, placed in a mobile isolette. She was taken down to surgery and we met with the surgeon and anesthesiologist. They both seemed really nice and explained everything. They didn't even seem annoyed at my million questions :-) The surgeon would first do an examination of Chloe's eyes and then report to us before beginning any procedures. Just as Dave and I were settling into the family waiting room the surgeon came out.
He reported the following:
Right Eye (the good one): The "bad" blood vessels in the front and back of the eye had dissipated thanks to the original surgery. The retina is in good shape. He said that he could see the lasering from her surgery and that it was a job well done.
Left Eye (the bad one): The "bad" blood vessels in the front of the eye had dissipated thanks to the original surgery. The retina is flat and NOT detached. In addition, the pressure-relieving drops given overnight helped. He would NOT do a vatrectomy to clear out the blood because he thinks that, with a little more time, the blood will all clear out on its own. He will watch her eyes bedside this week and do another big examination next Monday. But based on everything else he saw, he expects to see that the back of the left eye will look good, too! Bottom line: NO SURGERY TODAY AND (HE EXPECTS) NO SURGERY NEXT WEEK!!!!
This is way better news than we expected! I feel like I just had a year's worth of blessings in one day. :-) We definitely have a lot to be thankful for this year! And what a great 3 month birthday present for Chloe!
Today she is:
3 months old
38 weeks gestation
approx. 3 pounds 5 ounces
After lunch and some grocery shopping to stock up my new little kitchen we returned for a little scare. We walked in to see Chloe's HUGE distended belly! They had restarted her IV fluids and stopped her feeds because she didn't seem to tolerate her first feeding. After all the feeding problems she had in the past this was slightly frightening. They skipped her next feeding but then decided to start her again as we arrived. The neonatologist thinks she was swallowing a lot of air because of the CPAP and decided to try her on the cannula. This is not the "high flow" cannula. It's just "off the wall," which means less pressure/support. I sure hope she does well on it. It's so much more comfortable for her and it's a step in the right direction. The next step after this is completely breathing on her own! (Theoretically)
Dave and I both got to hold her during this feeding, which I think made her really happy. She's getting 30cc's over two hours with an hour break before her next feeding. They checked her belly after her hour break and it was empty. Whew! (Plus, she farted a lot while we held her - getting some of that excess gas out!)
If all goes well we might leave here in a week or so! Fingers crossed!!!
Saturday, November 21, 2009
Day 90 - Visit from Grammy and Grampy
Chloe's departure to Michigan will be tomorrow at 6:30am. I get to ride the in the ambulance and Dave will follow behind. It's about a 3 1/2 hour drive. Unfortunately, there's not a Ronald McDonald house but we were able to secure an apartment right next to the hospital through the 7th. Hoping we won't need it that long! It's within walking distance from the hospital so that will be really convenient. I'll stay there as long as Chloe's there and Dave and Solana will visit on the weekends.
My parents arrived late last night. We put aside worrying for the day and spent some great Grammy and Grampy time before leaving for Michigan. We had breakfast at Cracker Barrel this morning (yum!) and then headed over to the hospital. We had a fantastic visit! I figured my parents would feel uncomfortable doing kangaroo care but wanted them to hold Chloe. Fortunately, our nurse offered to dress Chloe in an outfit, bundle her up, and take her out for family time! I wished I had brought some of the cute clothes my sister and Mom had bought her but she was so bundled up that you can't see them in the pictures, anyway. Plus, they lifted the restriction on children so Solana got to visit Chloe, too!!! She was beside herself with excitement but some how managed to reign it in and be quiet and still (except for her trembling with excitement :-)
My parents are getting their first peek at Chloe. My dad has never seen her before! My mom hasn't seen her in a couple of months!
We were there a few minutes when we learned the restriction on children had been lifted. Dave and Solana were in the waiting area outside and got to come in. Solana was so excited! She's just approaching the isolette above. In the picture below she and my mom are waiting for the nurse to take Chloe out of the isolette. I caught my mom blinking but check out the look on Solana's face! She's soooo excited!
My parents arrived late last night. We put aside worrying for the day and spent some great Grammy and Grampy time before leaving for Michigan. We had breakfast at Cracker Barrel this morning (yum!) and then headed over to the hospital. We had a fantastic visit! I figured my parents would feel uncomfortable doing kangaroo care but wanted them to hold Chloe. Fortunately, our nurse offered to dress Chloe in an outfit, bundle her up, and take her out for family time! I wished I had brought some of the cute clothes my sister and Mom had bought her but she was so bundled up that you can't see them in the pictures, anyway. Plus, they lifted the restriction on children so Solana got to visit Chloe, too!!! She was beside herself with excitement but some how managed to reign it in and be quiet and still (except for her trembling with excitement :-)
My parents are getting their first peek at Chloe. My dad has never seen her before! My mom hasn't seen her in a couple of months!
We were there a few minutes when we learned the restriction on children had been lifted. Dave and Solana were in the waiting area outside and got to come in. Solana was so excited! She's just approaching the isolette above. In the picture below she and my mom are waiting for the nurse to take Chloe out of the isolette. I caught my mom blinking but check out the look on Solana's face! She's soooo excited!
First kiss from big sister, Solana. This picture makes me want to cry!
Friday, November 20, 2009
Day 89 - Michigan
Well, they checked Chloe's eyes again yesterday and her right eye continues to get better. This is great. But her left eye still has a lot of blood so they can't see what's going on in there. They're worried enough that they want to send Chloe to William Beaumont Hospital in Michigan. She'll probably leave tomorrow by ambulance and be seen on Monday. They'll do an ultrasound to try and get a better idea of what's going on in there before they decide to do a vitrectomy. The eye doctor seems to have the attitude that they'll do the surgery but there's a chance that they'll getter a better look with the ultrasound and decide they don't need to do the surgery. Please help us pray that this is what happens. We have all weekend! The doctor said her stay could be as short as a few days (if they decide she doesn't need surgery) or as long as a month (if they do the surgery).
Fortunately, my parents are coming to town tonight for a week so they can help out with Solana when Dave and I travel with Chloe. Thank God for them.
Fortunately, my parents are coming to town tonight for a week so they can help out with Solana when Dave and I travel with Chloe. Thank God for them.
Thursday, November 19, 2009
Day 88 - Feeling Thankful
Well, Chloe gained a whopping 10grams last night (sarcasm). They increased her feeds to 10cc's per hour and she's still getting 4 extra calories from elecare. And I'm still sending over hindmilk for her. It seems like she should be packing on the ounces...but I won't dwell on her lack of weight gain too much. They do say she should be gaining 1/2 to 1 ounce per day and that is definitely not happening. They hesitate to push her too hard, though, because of her history of intestinal problems and I agree with that. I just need to keep having faith (which I do - for the moment) that she'll start gaining weight soon enough.
In the meantime I'm thankful for every day that I visit Chloe and see her bright-eyed, breathing on her own, pooping in her diaper, sucking her pacifier, etc. The lack of "bad stuff" is such a good thing to have. Every time I go in for kangaroo care I can't help but kissing the top of her fuzzy little head. She's SUCH a sweetheart! I love her I love her I love her!
I think I'm feeling the Thanksgiving spirit today. Right now I'm so thankful we're living in such a great place. One wonderful thing about living in Ohio during this time is all the genuinely kind people we're surrounded by. Solana and I visited our new dentist's office a couple of weeks ago and loved the ladies there (I usually decide how much I like a dentist's office based on how nice the people are). They acted like we were old friends from the moment we walked in the door. Of course, the dentist asked Solana if she had siblings and...well...he got the whole story. I'm not sure how I talked so much while getting my teeth cleaned but I chatted with the hygenist quite a bit and shared Chloe with her. Yesterday we received a beautiful card and very generous grocery gift card from them! What a shock! (If you need a dentist in Centerville, by the way, I highly recommend Alex-Bell Dentistry.) Does this sort of kindness exist everywhere or were we just plopped into the perfect place for the challenges with which we were about to be faced? I wonder...
Dave and I aren't used to accepting generosity from other people. We usually want to say, "Oh no, it's ok. Thank you, though." We're learning how to just say, "Thank You," because people really do just want to be kind and helpful. And, like it or not, we're the people having a hard time - for now.
In the meantime I'm thankful for every day that I visit Chloe and see her bright-eyed, breathing on her own, pooping in her diaper, sucking her pacifier, etc. The lack of "bad stuff" is such a good thing to have. Every time I go in for kangaroo care I can't help but kissing the top of her fuzzy little head. She's SUCH a sweetheart! I love her I love her I love her!
I think I'm feeling the Thanksgiving spirit today. Right now I'm so thankful we're living in such a great place. One wonderful thing about living in Ohio during this time is all the genuinely kind people we're surrounded by. Solana and I visited our new dentist's office a couple of weeks ago and loved the ladies there (I usually decide how much I like a dentist's office based on how nice the people are). They acted like we were old friends from the moment we walked in the door. Of course, the dentist asked Solana if she had siblings and...well...he got the whole story. I'm not sure how I talked so much while getting my teeth cleaned but I chatted with the hygenist quite a bit and shared Chloe with her. Yesterday we received a beautiful card and very generous grocery gift card from them! What a shock! (If you need a dentist in Centerville, by the way, I highly recommend Alex-Bell Dentistry.) Does this sort of kindness exist everywhere or were we just plopped into the perfect place for the challenges with which we were about to be faced? I wonder...
Dave and I aren't used to accepting generosity from other people. We usually want to say, "Oh no, it's ok. Thank you, though." We're learning how to just say, "Thank You," because people really do just want to be kind and helpful. And, like it or not, we're the people having a hard time - for now.
Wednesday, November 18, 2009
Obligatory Diaper Post
So, after reading a few premie blogs I decided I'd be negligent if I didn't post the following pictures. I've actually meant to for quite a while but just haven't taken the time. After seeing the same on other blogs I finally decided to get my rear in gear and post them. Here are Chloe's cute-as-can be diapers:
And here's my first white hair. Compliments of Day 19 and Chloe's abdominal surgery. I found it a couple of days after the surgery and have been meaning to share this picture, as well. (I actually found a white hair in my eyebrows the day after laser ablation surgery when I was pregnant but don't think that one counts since I just plucked it. I'm going to let this one stick around...) I thought it was kind of funny that I'm actually getting white hairs from this. I always thought that was just a wives tale!
Day 87 - Eyes Look Better
The Opthamologist examined Chloe's eyes this morning and was "encouraged" because her right eye looks "dramatically better." He still sees some blood in her left eye and will be back to check them again on Monday. He said that a future procedure is still a possibility but no trips to Michigan for now. I'll take this. We could have gotten a much worse report! I called Dave at work to let him know and heard him take a big breath and let it out in a big sigh of relief. That's exactly how I feel. We've been on pins and needles the last couple of days. Now we can put off our next worry session until Sunday or so.
Chloe's still hanging in there on her high flow. They had reduced her to 2 liters flow on her nasal canula but I noticed that she was breathing extremely fast when I was holding her Sunday night. She appeared to be restful and wasn't fussing or anything. She was just consistently breathing 90-110 breaths per minute. This concerned me since she lost weight Sunday. Breathing 110 breaths per minute is HARD! I tried to breathe along with her as I held her and couldn't even keep up for one minute. I was pooped! The nurse practitioner kind of laughed when I told that. She said that babies naturally breathe three times faster than adults. There are just certain things that they can still do that we can't (like hold their breath until their O2 saturation drops below 90% - our bodies just won't let us do that) so while it's really hard for me to breathe that fast it's not quite the same experience for her. Even so, they decided to change her flow back up to 3 liters. They knew they were pushing her with the fast weaning and decided to pull back just a bit. Her numbers looked much better last night!
She seems to be dropping a bit of weight. In the last two days she went from 1410 grams on Saturday to 1390 Sunday and then 1380 grams last night. This is NOT the direction we want to be heading! Fortunately, she's handling her feeds well and pooping a-plenty. We know the plumbing is working and that's a very good thing. We just need some of that milk to go towards growing!
Chloe's still hanging in there on her high flow. They had reduced her to 2 liters flow on her nasal canula but I noticed that she was breathing extremely fast when I was holding her Sunday night. She appeared to be restful and wasn't fussing or anything. She was just consistently breathing 90-110 breaths per minute. This concerned me since she lost weight Sunday. Breathing 110 breaths per minute is HARD! I tried to breathe along with her as I held her and couldn't even keep up for one minute. I was pooped! The nurse practitioner kind of laughed when I told that. She said that babies naturally breathe three times faster than adults. There are just certain things that they can still do that we can't (like hold their breath until their O2 saturation drops below 90% - our bodies just won't let us do that) so while it's really hard for me to breathe that fast it's not quite the same experience for her. Even so, they decided to change her flow back up to 3 liters. They knew they were pushing her with the fast weaning and decided to pull back just a bit. Her numbers looked much better last night!
She seems to be dropping a bit of weight. In the last two days she went from 1410 grams on Saturday to 1390 Sunday and then 1380 grams last night. This is NOT the direction we want to be heading! Fortunately, she's handling her feeds well and pooping a-plenty. We know the plumbing is working and that's a very good thing. We just need some of that milk to go towards growing!
Monday, November 16, 2009
Day 85 - ROP Continues
Today's eye exam didn't go as we had hoped. The ROP doesn't seem to care that they did laser surgery. It's continuing on. They started Chloe on some new eye drops. These are steroid drops that they say could possibly help to stop the ROP. They're going to try those until Wednesday or Thursday and if they don't work she may possibly need another laser surgery or maybe a more complicated surgery.
I didn't get to talk to the opthamologist but I believe that the more complicated surgery is vitrectomy. My nifty little brochure, "A Parents' Guide to Their Premature Baby's Eyes" tells me that, "If the retina detaches, removal of the vitreous (vitrectomy) and lens may be needed." I think this is a real possibility. In addition to the scariness of that - Chloe would be moved to Detroit for the surgery. As in Detroit, Michigan.
Nothing against Michigan. I just really really don't want to go there right now and for this reason.
I didn't get to talk to the opthamologist but I believe that the more complicated surgery is vitrectomy. My nifty little brochure, "A Parents' Guide to Their Premature Baby's Eyes" tells me that, "If the retina detaches, removal of the vitreous (vitrectomy) and lens may be needed." I think this is a real possibility. In addition to the scariness of that - Chloe would be moved to Detroit for the surgery. As in Detroit, Michigan.
Nothing against Michigan. I just really really don't want to go there right now and for this reason.
Sunday, November 15, 2009
How We Do It
As I walked out of the hospital the other day I ran into another mother that I had met at Miami Valley. We chatted about why we each had moved to Children's and I learned that her 5 month-old little girl moved over because she had to be trach'd. Of course, the first thing I thought was, "My nightmare from two weeks ago. She is living it," and felt soooo bad for her. But what stood out to me was how OK she was with it! She didn't start crying or seem defeated when she told me. Suddenly, I found myself transported into the position of other people who find out that I have a daughter in the NICU. I wondered, "How does she do it? Five months? Trach'd?" This really got me thinking. People sometimes ask me, "How do you do it?"
Before becoming the mother of a 1lb 7oz micropremie I could NEVER have imagined life as the mother of a micorpremie. I couldn't have even fathomed how the parents could bear to leave their babies in the hospital and go home or watch their child undergo hundreds of heel pricks, a dozen blood transfusions, multiple surgeries, weeks of intubation, etc. These things seemed nothing but a nightmare to me. I remember wondering how early my babies could be born without having to stay in the hospital because that would be my goal for keeping the twins inside. I didn't even want to leave them one single day.
Since becoming the mother of a 1lb 7oz micropremie I live one day at a time and can do nothing other than love my daughter, do everything and anything I can for her, and try to maintain a normal-as-possible life for myself and my family. I don't know 'how' I do it. I just do it. I don't exactly have a choice. And it's not over. We will certainly have new challenges to deal with and Chloe has more battles to fight. I don't know 'how' we will handle those but I know for certain that we will. We will square our shoulders and continue on in this new journey that we call "Life." We're not always graceful or elegant and we don't always know the right thing to say or the right way to act. We just keep trying to do our best and trying be the best we can be.
So I think maybe, while I really don't know how she does it, I know why she does it. She has no choice because she loves her daughter. And that's all she can do.
Before becoming the mother of a 1lb 7oz micropremie I could NEVER have imagined life as the mother of a micorpremie. I couldn't have even fathomed how the parents could bear to leave their babies in the hospital and go home or watch their child undergo hundreds of heel pricks, a dozen blood transfusions, multiple surgeries, weeks of intubation, etc. These things seemed nothing but a nightmare to me. I remember wondering how early my babies could be born without having to stay in the hospital because that would be my goal for keeping the twins inside. I didn't even want to leave them one single day.
Since becoming the mother of a 1lb 7oz micropremie I live one day at a time and can do nothing other than love my daughter, do everything and anything I can for her, and try to maintain a normal-as-possible life for myself and my family. I don't know 'how' I do it. I just do it. I don't exactly have a choice. And it's not over. We will certainly have new challenges to deal with and Chloe has more battles to fight. I don't know 'how' we will handle those but I know for certain that we will. We will square our shoulders and continue on in this new journey that we call "Life." We're not always graceful or elegant and we don't always know the right thing to say or the right way to act. We just keep trying to do our best and trying be the best we can be.
So I think maybe, while I really don't know how she does it, I know why she does it. She has no choice because she loves her daughter. And that's all she can do.
Day 84 - Chloe
Life is still good in Chloeland. Our little trooper is kicking bootie on her high flow. They started her at 5 liters (this measurement represents the speed/amount of air flowing into her nose through her canula and assisting her in keeping her airways open) and have already weaned her twice. She's now down to 3 liters and doing really well. She's also up to 4 extra calories of elecare and tolerating that well. They finally removed her pic and IV lines so all hands and feet are free of tape and wires. Between this and her tube-free mouth, transfer from her isolete for kangaroo-ing has become a breeze! (For some reason ALL the respiratory therapists are men at this NICU. Their assistance during transfer created slightly akward moments for me as I tried to keep myself covered while the nurse placed Chloe on my bare chest...)
We are just loving these good days and feeling soooo appreciative for them! We're learning new things about Chloe, too!
1. She really REALLY loves her pacifier. I only hope she's not burning too many calories crying for that thing while I'm not there to pop it back in for her.
2. She really REALLY hates dirty diapers. Apparently, she was so comfortable during kangaroo-ing yesterday that she filled her diaper, which effectively ended kangaroo time. She was so upset that there was nothing I could do to console her. She was crying her oh-so-sad little cry (I can't believe I was ever excited to hear that! What was I thinking? It just tears me up to hear that tiny little cry! BUT...it is good that she's finally communicating with us...) After a few minutes of trying everything I could think of I finally decided to put her back and we checked her diaper. Yep. It was full of poop. She continued her little tantrum until her diaper was changed. Someone told me that her hatred of dirty diapers will mean easier potty training... (I wish!) So far, three different nurses have told me that Chloe did fantastic during their shift. Her only episodes were high heart rates due to crying episodes when she has a dirty diaper. If those are her only bad moments I am very pleased.
Chloe is:
13 weeks old today
37 weeks gestation tomorrow
3lb 1oz (she lost a few ounces when they removed her pic and iv lines :-(
We are just loving these good days and feeling soooo appreciative for them! We're learning new things about Chloe, too!
1. She really REALLY loves her pacifier. I only hope she's not burning too many calories crying for that thing while I'm not there to pop it back in for her.
2. She really REALLY hates dirty diapers. Apparently, she was so comfortable during kangaroo-ing yesterday that she filled her diaper, which effectively ended kangaroo time. She was so upset that there was nothing I could do to console her. She was crying her oh-so-sad little cry (I can't believe I was ever excited to hear that! What was I thinking? It just tears me up to hear that tiny little cry! BUT...it is good that she's finally communicating with us...) After a few minutes of trying everything I could think of I finally decided to put her back and we checked her diaper. Yep. It was full of poop. She continued her little tantrum until her diaper was changed. Someone told me that her hatred of dirty diapers will mean easier potty training... (I wish!) So far, three different nurses have told me that Chloe did fantastic during their shift. Her only episodes were high heart rates due to crying episodes when she has a dirty diaper. If those are her only bad moments I am very pleased.
Chloe is:
13 weeks old today
37 weeks gestation tomorrow
3lb 1oz (she lost a few ounces when they removed her pic and iv lines :-(
Saturday, November 14, 2009
Day 83 - Three Pounder
I've been waiting to say this for so long... Chloe is now over 3 pounds! Yeah! It took long enough, but she's finally there :-) 3.2 pounds to be precise. The doctors are a bit concerned with her slow weight gain over the past couple of weeks. They stopped her feeds twice during that time, though (once because of fortifier intolerance and second for eye surgery), and she dropped weight both times. I think she'll start putting on weight more now that she doing well with feeds and not fighting her tube. They did increase her feeds from 8.5 to 9cc's per hour. This is 7.3 ounces per day. Chloe's done so well the past few days that I feel greedy asking for more but let's pray that she continues to grow and improve her lung function. She also has her first follow-up eye exam on Monday or Tuesday so we must not forget about that. They said it would be two weeks before they would really know if another surgery is needed. A good report on her first exam would be nice, though, don't you think?
Last night's visit was interesting. It started with me lifting the cover to Chloe's isolette and immediatly witnessing her (laying on her belly) lift head and shoulders and roll off her little belly pad. What the...? What kinds of steroids did they give this baby? Apparently, she was upset about losing her pacifier (her new best friend since the tubes are gone) and expressing herself with a little tantrum. She continued through her care. I think I was staring wide eyed and mouth agape into the isolette as the nurse completed her care and was shaken from my trance when she asked, "Do you want to change her diaper?" Usually, I'm all over that but this wild little creature kind of scared me. "I'm not sure!" (Giggling) Fortunately, I managed to Mommy-handle my little wild thing enough to get her diaper on (albeit sloppily...thank goodness there was no poop!) Hmmm. "I wonder if she'll let me hold her," I started to worry. But once again Chloe stroked my Mommy-ego. As soon as we took her flailing little body out of the isolette and placed her on my chest it was like we flipped a switch. Immediate stillness. She was a happy little kangaroo and didn't so much as twitch for two solid hours. Little stinker. I can't even say how happy she makes me. Keep up the good work baby doll!
Last night's visit was interesting. It started with me lifting the cover to Chloe's isolette and immediatly witnessing her (laying on her belly) lift head and shoulders and roll off her little belly pad. What the...? What kinds of steroids did they give this baby? Apparently, she was upset about losing her pacifier (her new best friend since the tubes are gone) and expressing herself with a little tantrum. She continued through her care. I think I was staring wide eyed and mouth agape into the isolette as the nurse completed her care and was shaken from my trance when she asked, "Do you want to change her diaper?" Usually, I'm all over that but this wild little creature kind of scared me. "I'm not sure!" (Giggling) Fortunately, I managed to Mommy-handle my little wild thing enough to get her diaper on (albeit sloppily...thank goodness there was no poop!) Hmmm. "I wonder if she'll let me hold her," I started to worry. But once again Chloe stroked my Mommy-ego. As soon as we took her flailing little body out of the isolette and placed her on my chest it was like we flipped a switch. Immediate stillness. She was a happy little kangaroo and didn't so much as twitch for two solid hours. Little stinker. I can't even say how happy she makes me. Keep up the good work baby doll!
Friday, November 13, 2009
Day 82 - Doing Well!
No time to post today but just wanted to let you all know that Chloe's still doing well. Thank you for all your continued prayer and words of support.
Love to all,
Cyndi
Love to all,
Cyndi
Thursday, November 12, 2009
Day 81 - Look at that little mouth!
As of this posting Chloe has made it 20 hours without a breathing tube! They decided to do it yesterday and I wanted to be there when they did it. Fortunately, Dave had the day off for Veteran's Day (Happy belated Veteran's Day to all you veterans out there, by the way!) so I didn't have to wait until after dinner to make it to the hospital. I made it there around 4:30pm and they extubated her right around 5pm.
Ignore my hideous hands. After all the washing, scrubbing, disinfectant foam I'm using they look like crocodile hands. I just thought this would be a good one to get a better perspective of her size.
She seemed to be doing well right away but didn't like that her feeding tube was still in her mouth and was actually getting pretty ticked off at it. I was standing at her isolette with one hand on her head just watching her and after about an hour or so she'd had just about enough. She reached up for her feeding tube and, before I could open the other isolette door and grab her little hand, she yanked it right out. So the nurse moved her feeding tube (which goes down to her belly) from her mouth to her nose. Getting it in there was definitely NOT a fun procedure but I think Chloe will be much more comfortable in the long run. And as an added side benefit we get a full view of her beautiful little mouth. Look at how amazing she is!! You absolutely MUST click and enlarge this one! 
Her upper lip is heart-shaped - I LOVE THAT! Her eyes are still puffy from the ROP surgery but that will go down soon. And her cheeks are still red from the neobar tape but I imagine that's faded by now, as well. I took this picture while the nurse was preparing her new feeding tube, so she's sans feeding tube here but she looks just about the same with it since it follows her canula tube and into her left nostril.
Ignore my hideous hands. After all the washing, scrubbing, disinfectant foam I'm using they look like crocodile hands. I just thought this would be a good one to get a better perspective of her size.
Look how I've grown!
The smaller prints were taken on 9/11/09 and the larger ones were taken on 10/20. We are truly blessed!
Wednesday, November 11, 2009
Day 80 - Recovering - Updated
Update: Extubation today around 4:30! I'm trying to get out of here so I can be there!!
The opthamologist seemed satisfied with the surgery yesterday. Sometimes the ROP isn't completely stopped by surgery so we're praying that it stops. He did say that Chloe will almost certainly need really thick glasses. We'll be more than happy to have a little girl running around with thick glasses. We just hope the ROP stops because that could have devastating effects that we won't think about right now.
Chloe seems to be doing well. The nurse said that she's her old self again. She threw a fit this morning when she filled her diaper causing it to leak into her bedding. :-) Hopefully, they'll start feeds again this morning and they're still weaning down her ventilator. We should find out after rounds this morning their thoughts on extubation. Yesterday they made it sound like they'd try it again as soon as they can wean down her ventilator - maybe today!
The opthamologist seemed satisfied with the surgery yesterday. Sometimes the ROP isn't completely stopped by surgery so we're praying that it stops. He did say that Chloe will almost certainly need really thick glasses. We'll be more than happy to have a little girl running around with thick glasses. We just hope the ROP stops because that could have devastating effects that we won't think about right now.
Chloe seems to be doing well. The nurse said that she's her old self again. She threw a fit this morning when she filled her diaper causing it to leak into her bedding. :-) Hopefully, they'll start feeds again this morning and they're still weaning down her ventilator. We should find out after rounds this morning their thoughts on extubation. Yesterday they made it sound like they'd try it again as soon as they can wean down her ventilator - maybe today!
Tuesday, November 10, 2009
Day 79 - ROP Surgery
They realized yesterday morning that Chloe was due for another eye exam and decided to hold off on extubation until after her eye exam. It's a good thing, too, because the eye doctor decided that Chloe progressed to Stage 3 ROP and needs laser surgery. I haven't had a chance to talk to him (the eye doctors are very elusive) so I don't know too much more. We have lots of questions about how bad her ROP is, the procedure, long-term effects, etc. The surgery is scheduled for 3:30pm ET. They'll give her pain medication and a paralyzing drug so she doesn't move. They'll turn up her ventilator really high since she'll be paralyzed. She's probably pretty hungry right now. They had to stop her feeds this morning because of the anesthesia :-(
After the surgery she should recover pretty quickly. They'll restart her feeds and wean her ventilator settings. Unfortunately, they'll probably have to do another round of steroids to try and get her off the ventilator. We want to limit steroids - they're not really good for her - but we also want to get her off the ventilator since her body seems to be fighting it. It's a constant balance of what's more important. Praying praying praying.
After the surgery she should recover pretty quickly. They'll restart her feeds and wean her ventilator settings. Unfortunately, they'll probably have to do another round of steroids to try and get her off the ventilator. We want to limit steroids - they're not really good for her - but we also want to get her off the ventilator since her body seems to be fighting it. It's a constant balance of what's more important. Praying praying praying.
Monday, November 9, 2009
Pictures
Lifting Chloe during her care. Her isolette has a scale inside so that we can get her weight without removing her from her bed.
Getting bigger! But still tiny :-)
Snuggling with her snoodle doll.
Sucking her thumb like a champ! She was going to town on that thumb all through kangaroo care last night!
Day 78 - steroids
They started Chloe on steroids again and caffine citrate in hopes of extabating her today. Please pray she's strong enough to stay off the ventillator!
Sunday, November 8, 2009
Back Story
It recently occurred to me that some of you may have no idea what happened prior to Chloe's arrival. That's usually the first question people ask when they find out we have a daughter in the NICU. So here's our story...
April 27, 2005: We welcome our first daughter, Solana Marie, into this world. I take exactly 6 weeks off work and then head back to my full-time accounting job. For the next three and a half years I pretty much get to see Solana for 2-3 hours a day plus weekends. There's no way we can have another baby with this schedule but we're financially committed and I can't stop working.
March 2008: We meet our new nephew and I'm head over heels in love with him. We absolutely MUST have another baby. We decide we'll find a way to make it work.
June 2008: We decide we want to try for a boy. I read "How to choose the sex of your baby," go off birth control in order to start tracking my cycle, and start taking prenatal vitamins.
November 2008: An opportunity to move to Ohio. I won't have to work anymore!
January 2009: We move to Ohio.
February 2009: We're freaked out at the thought of having a boy and decide to leave it up to God. All the cycle tracking I've been doing gets tossed out the window and we stop using backup contraception.
Mid-March: I'm pregnant but don't know it yet.
April 1: We leave for a resort week in Mexico. Pregnancy test is negative. Woohoo! I can drink!
April 4: Hmm. I thought I should have started my period by now... Could it be the travel? Yeah, it must be the travel.
April 5: Um...still not here..and..why is my chest sore? Fortunately, this is a family trip so I haven't had much to drink. But I think I won't have anymore kaluah and creams...
April 8: We return home very late at night and I immediately pass out in bed. 5am I wake up and take another pregnancy test. Pregnant!!
April/May: I read a book by Ina Mae, a famous midwife, and am really excited about my decision to have a natural childbirth experience. This time there will be no yucky petocin or epidural for me! I'm jogging, hiking, doing yoga, and feeling great!
May 27: We go in for an ultrasound because of bleeding the previous night. Dave is chatting with Solana when the technician starts the ultrasound.
Technician: And there are two in there.
Me: What?
Technician: You're having twins.
Me: HA! (uncomfortable)Uh, you're kidding, right?
Technician: No, I wouldn't joke about something like that.
I look at Dave.
Dave: What?
Me: Babe! (for some reason, this comes out like a whiney plea)Twins!
We're in total shock. After the ultrasound is over we sit around for what seems like forever before the doctor comes in. She talks about some scary disease that is only 10% likely for single placenta twin pregnancies and we disregard it since it's not going to happen to us. We have more important things to worry about like, "Oh my gosh we're having twins!" Unfortunately, I can't have them in the uber-cool birthing center for the kick-butt moms (like me) who are going to go natural. They don't allow "high risk" births in there. Pssssht. High risk my bootie! I'm healthy as a horse. I'm pretty sure I still want to go natural but won't commit just yet. We need to go home and freak out a bit more before I can make any committments. We spend the next couple of weeks alternating between excitement and fear. It took us three years to decide we were up for the challenge of another baby and now we're having twins. Dave and I looked at eachother many times and say, "We're having twins!" Then we spend another month getting ready. We're in the midst of house hunting in Ohio and change gears on neighborhoods and criteria. We definitely need a bigger house and yard now. Plus, my Outback will no longer fit the bill for our two carseat/one booster family. We trade in my cherished Outback and Dave's Legacy for aminivan. (I quickly decide I love my minivan, by the way.)
July 9 (18weeks)
It's finally time for our next ultrasound! Exciting news! We're having girls! Bad news. We're diagnosed with Twin to Twin Transfusion Syndrome (TTTS). The girls are sharing one placenta and there are abnormal blood vessels connecting the girls through the placenta. It's only stage 1. The doctor recommends bed rest and protein drinks. We're all over it. We name the girls. Leila is our little donor and Chloe is the recipient.
July 17 (19 weeks)
Our next ultrasound is, unfortunately, late on a Friday afternoon. We've progressed to Stage 3. The doctor thinks we need laser surgery because the babies are in danger but there's nothing we can do until Monday. The next two and a half days are the longest of my life. I pretty much cried the entire weekend. My mom arrived from Texas on Saturday to help us take care of Solana and we leave Sunday night for Columbus.
July 20 (20 weeks)
We meet with the surgeon on Monday and have the laser surgery on Tuesday. During the surgery I hear lots of cursing from the surgeon of the "Shit Shit Shit" brand and am completely freaked out. As it turns out, Chloe was exceptionally active during surgery (we're not surprised as this is already typical of her) and kept getting in the way of the laser and camera. Otherwise, he says the surgery went well and he thinks he blasted away all the connections between the girls. The girls survive the night after surgery and we're thrilled because we're told this is when we're most likely to lose a baby. The following week the girls still look good and Dave finally feels them kicking! We're feeling good, like the TTTS was cured and I just need to remain on bedrest because of my damaged membranes.
August 3&6 (22 weeks)
Our second post-op visit does not look good. On Monday the doctor sees TAPS, which means the surgery didn't completely work. Leila shows signs of anemia. He wants us back in three days for another checkup and possible blood transfusion. On Thursday we return to Columbus and end up getting the blood transfusion for Leila. There's another family in the hospital that same day that had laser surgery and four blood transfusions. The mom carried the babies until week 32 and they're doing well. I'm feeling confident that the girls will be fine.
August 11 (23 weeks)
We visit my high risk OB in Dayton, since the Columbus surgeon is out of the office. He is sorry to tell us that Leila has passed. I'm in complete shock. I've been feeling kicking all weekend and am sure they're both fine! How could this be? I think I'll remember forever the moment the doctor tells me. It's weird how that moment is burned in my mind. That and the moment that we tell Solana and the heart-wrenching sound of her sobbing in my arms at the loss of her sister. Her 4 year-old cries, "But I don't WANT my sister to grow wings and fly with the angels! I want TWO baby sisters" echoes my heart. I am to remain on bedrest but not as strict since TTTS is over. I realize how easy it could be to sink into a depression after a loss but find comfort in the love of my family and responsibility in my duty to them.
August 18 (24 weeks)
Chloe looks good but the doctor is concerned about my damaged membranes. They give me a steroid shot for Chloe's lungs just in case. Dave repeats the shot the next day. We discuss my activity level. Walking around the house is fine. I just shouldn't do anything strenuous like rearranging furniture and "nesting" for Chloe's arrival.
August 22 (24 weeks 5 days)
Membranes rupture. You know the rest.
April 27, 2005: We welcome our first daughter, Solana Marie, into this world. I take exactly 6 weeks off work and then head back to my full-time accounting job. For the next three and a half years I pretty much get to see Solana for 2-3 hours a day plus weekends. There's no way we can have another baby with this schedule but we're financially committed and I can't stop working.
March 2008: We meet our new nephew and I'm head over heels in love with him. We absolutely MUST have another baby. We decide we'll find a way to make it work.
June 2008: We decide we want to try for a boy. I read "How to choose the sex of your baby," go off birth control in order to start tracking my cycle, and start taking prenatal vitamins.
November 2008: An opportunity to move to Ohio. I won't have to work anymore!
January 2009: We move to Ohio.
February 2009: We're freaked out at the thought of having a boy and decide to leave it up to God. All the cycle tracking I've been doing gets tossed out the window and we stop using backup contraception.
Mid-March: I'm pregnant but don't know it yet.
April 1: We leave for a resort week in Mexico. Pregnancy test is negative. Woohoo! I can drink!
April 4: Hmm. I thought I should have started my period by now... Could it be the travel? Yeah, it must be the travel.
April 5: Um...still not here..and..why is my chest sore? Fortunately, this is a family trip so I haven't had much to drink. But I think I won't have anymore kaluah and creams...
April 8: We return home very late at night and I immediately pass out in bed. 5am I wake up and take another pregnancy test. Pregnant!!
April/May: I read a book by Ina Mae, a famous midwife, and am really excited about my decision to have a natural childbirth experience. This time there will be no yucky petocin or epidural for me! I'm jogging, hiking, doing yoga, and feeling great!
May 27: We go in for an ultrasound because of bleeding the previous night. Dave is chatting with Solana when the technician starts the ultrasound.
Technician: And there are two in there.
Me: What?
Technician: You're having twins.
Me: HA! (uncomfortable)
Technician: No, I wouldn't joke about something like that.
I look at Dave.
Dave: What?
Me: Babe! (for some reason, this comes out like a whiney plea)
We're in total shock. After the ultrasound is over we sit around for what seems like forever before the doctor comes in. She talks about some scary disease that is only 10% likely for single placenta twin pregnancies and we disregard it since it's not going to happen to us. We have more important things to worry about like, "Oh my gosh we're having twins!" Unfortunately, I can't have them in the uber-cool birthing center for the kick-butt moms (like me) who are going to go natural. They don't allow "high risk" births in there. Pssssht. High risk my bootie! I'm healthy as a horse. I'm pretty sure I still want to go natural but won't commit just yet. We need to go home and freak out a bit more before I can make any committments. We spend the next couple of weeks alternating between excitement and fear. It took us three years to decide we were up for the challenge of another baby and now we're having twins. Dave and I looked at eachother many times and say, "We're having twins!" Then we spend another month getting ready. We're in the midst of house hunting in Ohio and change gears on neighborhoods and criteria. We definitely need a bigger house and yard now. Plus, my Outback will no longer fit the bill for our two carseat/one booster family. We trade in my cherished Outback and Dave's Legacy for a
July 9 (18weeks)
It's finally time for our next ultrasound! Exciting news! We're having girls! Bad news. We're diagnosed with Twin to Twin Transfusion Syndrome (TTTS). The girls are sharing one placenta and there are abnormal blood vessels connecting the girls through the placenta. It's only stage 1. The doctor recommends bed rest and protein drinks. We're all over it. We name the girls. Leila is our little donor and Chloe is the recipient.
July 17 (19 weeks)
Our next ultrasound is, unfortunately, late on a Friday afternoon. We've progressed to Stage 3. The doctor thinks we need laser surgery because the babies are in danger but there's nothing we can do until Monday. The next two and a half days are the longest of my life. I pretty much cried the entire weekend. My mom arrived from Texas on Saturday to help us take care of Solana and we leave Sunday night for Columbus.
July 20 (20 weeks)
We meet with the surgeon on Monday and have the laser surgery on Tuesday. During the surgery I hear lots of cursing from the surgeon of the "Shit Shit Shit" brand and am completely freaked out. As it turns out, Chloe was exceptionally active during surgery (we're not surprised as this is already typical of her) and kept getting in the way of the laser and camera. Otherwise, he says the surgery went well and he thinks he blasted away all the connections between the girls. The girls survive the night after surgery and we're thrilled because we're told this is when we're most likely to lose a baby. The following week the girls still look good and Dave finally feels them kicking! We're feeling good, like the TTTS was cured and I just need to remain on bedrest because of my damaged membranes.
August 3&6 (22 weeks)
Our second post-op visit does not look good. On Monday the doctor sees TAPS, which means the surgery didn't completely work. Leila shows signs of anemia. He wants us back in three days for another checkup and possible blood transfusion. On Thursday we return to Columbus and end up getting the blood transfusion for Leila. There's another family in the hospital that same day that had laser surgery and four blood transfusions. The mom carried the babies until week 32 and they're doing well. I'm feeling confident that the girls will be fine.
August 11 (23 weeks)
We visit my high risk OB in Dayton, since the Columbus surgeon is out of the office. He is sorry to tell us that Leila has passed. I'm in complete shock. I've been feeling kicking all weekend and am sure they're both fine! How could this be? I think I'll remember forever the moment the doctor tells me. It's weird how that moment is burned in my mind. That and the moment that we tell Solana and the heart-wrenching sound of her sobbing in my arms at the loss of her sister. Her 4 year-old cries, "But I don't WANT my sister to grow wings and fly with the angels! I want TWO baby sisters" echoes my heart. I am to remain on bedrest but not as strict since TTTS is over. I realize how easy it could be to sink into a depression after a loss but find comfort in the love of my family and responsibility in my duty to them.
August 18 (24 weeks)
Chloe looks good but the doctor is concerned about my damaged membranes. They give me a steroid shot for Chloe's lungs just in case. Dave repeats the shot the next day. We discuss my activity level. Walking around the house is fine. I just shouldn't do anything strenuous like rearranging furniture and "nesting" for Chloe's arrival.
August 22 (24 weeks 5 days)
Membranes rupture. You know the rest.
Saturday, November 7, 2009
Day 76 - Still Moving Slowly
We're still decreasing ventillator support - slowly but surely. The machine is now giving her only 18 breaths per minute. She has to do the rest.
Her weight is 2lb 14oz.
She's getting 2 extra calories per ounce from Elocare.
Not much else is changed - except me into my pajamas. I'm pooped and going to bed! Goodnight all!
Her weight is 2lb 14oz.
She's getting 2 extra calories per ounce from Elocare.
Not much else is changed - except me into my pajamas. I'm pooped and going to bed! Goodnight all!
Thursday, November 5, 2009
Day 74 - Slow and Steady Wins the Race
OK, well maybe she won't be winning any races any time soon. But I'm hoping that slow and steady will get her out the door of the NICU!
Chloe's respirator support is still being reduced a tiny bit each day. She had a little bit of a rough night last night. She seemed a bit aggitated while I held her and her nurse said it continued through the night. They gave her some Tylenol but she still had a couple of desat's/Brady's (when her oxygen saturation and heart rate both drop to unacceptable levels) so they increased her breaths per minute by two and, after a good blood gas this morning, decreased it back to 22.
The nurse also mentioned that her body might just need some time to get used to the decreased breathing support. Premies often 'forget' to breathe, especially if they're sleeping or super comfortable. Chloe's body has gotten accustomed to the vent doing the work for it. Her body now needs to start sensing for itself that her CO2 levels are high and that she needs to breathe and this might take a bit of time for her.
She's not gaining huge amounts of weight but is going up a tiny bit. She was at 1300 grams last Tuesday (right before they stopped her feeds) and then it went back down to 1240. She's now back up to 1300. That's slower weight gain than we'd like but I'm hoping we'll start seeing some real weight gain here soon. I've read some other blogs where babies coast for a while at the same weight then have a sudden big weight gain. They also increased her Elocare fortifier to 2 calories. Between that and my hindmilk she should be getting some pretty plumped up milk. Let's pray that it helps!
Chloe's respirator support is still being reduced a tiny bit each day. She had a little bit of a rough night last night. She seemed a bit aggitated while I held her and her nurse said it continued through the night. They gave her some Tylenol but she still had a couple of desat's/Brady's (when her oxygen saturation and heart rate both drop to unacceptable levels) so they increased her breaths per minute by two and, after a good blood gas this morning, decreased it back to 22.
The nurse also mentioned that her body might just need some time to get used to the decreased breathing support. Premies often 'forget' to breathe, especially if they're sleeping or super comfortable. Chloe's body has gotten accustomed to the vent doing the work for it. Her body now needs to start sensing for itself that her CO2 levels are high and that she needs to breathe and this might take a bit of time for her.
She's not gaining huge amounts of weight but is going up a tiny bit. She was at 1300 grams last Tuesday (right before they stopped her feeds) and then it went back down to 1240. She's now back up to 1300. That's slower weight gain than we'd like but I'm hoping we'll start seeing some real weight gain here soon. I've read some other blogs where babies coast for a while at the same weight then have a sudden big weight gain. They also increased her Elocare fortifier to 2 calories. Between that and my hindmilk she should be getting some pretty plumped up milk. Let's pray that it helps!
Wednesday, November 4, 2009
Halloween Costumes
The nurses had a little bit of halloween fun at Chloe's expense. I know I know. I'm a total halloween grinch. But just because I'm a party pooper doesn't mean I'm going to ruin everyone else's fun. Here's my little baby doll all dressed up for trick or treating. Click on the pictures to get a better look.
Fairy Princess Chloe.
She looks slightly put out in this picture. Maybe she's not into all this princess fairy stuff quite yet... ;-)
Gardener Chloe
I personally think she prefers this costume. Her expression is much more serene. She's probably imagining future gardening alongside her Mommy.
Fairy Princess Chloe.
She looks slightly put out in this picture. Maybe she's not into all this princess fairy stuff quite yet... ;-)
Gardener Chloe
I personally think she prefers this costume. Her expression is much more serene. She's probably imagining future gardening alongside her Mommy.
Tuesday, November 3, 2009
Day 72 - New Schedule/New Fortifier
Yesterday was Chloe's fourth day on full feeds of Mommy Brand Premium Milk. I expected them to start her on fortifier, since she'd already done 3 days on full feeds, but the doctor decided to give her an extra day. Today they are adding one calorie of Elocare. This is a more elemental/partially digested form of fortifier that should be easier on Chloe's bowels. I kind of drilled the NP who gave me this news because I'd had "Calcium," "Minerals," "Rickets," "OsteoSomething" drilled into my head for the last few days (and by four different people) and finally drank the KoolAid. OK! I'm sufficiently scared enough to approve Human Milk Fortifier. Then they say, "Oh. Nevermind. We'll just do Elocare even though we told you it doesn't have enough calcium and minerals for Chloe." Deep Breath....Please....Explain. So, she explained to me that, for a baby with an intestinal rupture history, and problems with fortifier, they want to try something easier on her first and then they'll proabably try the HM fortifier later on. For now we just want her to grow. Hmmm. Sounds awfully familiar. Did you guys just all agree to gang up on me until I approve the fortifier just to see if you could do it? And then decide not to use it just to screw with me? Or did it just occur to you that Chloe had an intestinal rupture because, after my squeaky wheel impression, you took a closer look at Chloe's chart? Either way, I'm happy now. She's getting an easier fortifier and will hopefully start packing on the pounds and packing on that new lung tissue!
Her blood gases have been acceptable enough that they've also tweaked her breaths per minute two days in a row. They're tweaking very very slowly (whisper voice) "in hopes that she doesn't notice." Hehe. These are her first changes in the right direction since they stopped the steroids. Let's hope we can keep sneaking vent changes with success...
In other Hendrickson news: Dave and I have constructed a plan so that I'm not constantly running around like a maniac and simultaneously getting nothing done. Keep in mind that this is a first draft and I'm pretty sure the blanks will be filled in with lots of cool fun stuff. For example, Solana and I will be baking pumpkin pies from our little sugar pumpkins this afternoon. Anyway, we're such nerds. Check out my chart and please feel free to comment on how dorky we are.
By the way, if you click on it (just like pictures) you can actually see the detail. I just told my dad that and he cracked up when he saw the big version ;-)
Tomorrow I promise a picture of Chloe dressed up for halloween! The nurses did it and I keep forgetting to bring the picture home.
Finally, thanks for all your support during my rough week. And thank you for continuing to pray for my baby girl.
Her blood gases have been acceptable enough that they've also tweaked her breaths per minute two days in a row. They're tweaking very very slowly (whisper voice) "in hopes that she doesn't notice." Hehe. These are her first changes in the right direction since they stopped the steroids. Let's hope we can keep sneaking vent changes with success...
In other Hendrickson news: Dave and I have constructed a plan so that I'm not constantly running around like a maniac and simultaneously getting nothing done. Keep in mind that this is a first draft and I'm pretty sure the blanks will be filled in with lots of cool fun stuff. For example, Solana and I will be baking pumpkin pies from our little sugar pumpkins this afternoon. Anyway, we're such nerds. Check out my chart and please feel free to comment on how dorky we are.
By the way, if you click on it (just like pictures) you can actually see the detail. I just told my dad that and he cracked up when he saw the big version ;-)
Tomorrow I promise a picture of Chloe dressed up for halloween! The nurses did it and I keep forgetting to bring the picture home.
Finally, thanks for all your support during my rough week. And thank you for continuing to pray for my baby girl.
Sunday, November 1, 2009
Day 70 - The Foot is Down
Today was a pretty good day for Chloe despite her yucky bad start. After a night of freaking out about the fact that she's been intibated for so long, and all the damage that's doing to her throat, she starts the morning out by (of course) self extibating! Exactly what I wanted to hear this morning. Fortunately, they got her tube back in easily (or so they say). Every time that thing goes in and out I get so nervous of the damage it's doing. Patience, Cynthia.
The rest of her day was fine, though, thank God. Her oxygen settings are going down ever so slowly. They're hovering around 30-35 right now. She still desat's and needs suctioning every once in a while but it makes sense that the O2 levels in her body drop when she has phlem blocking her breathing tube. (Just imagine breathing through a straw and then getting a wad of phlem stuck in it. How much would that suck?) I spoke with the nurse practitioner today who also reassured me that she recently had babies come off respirators after 89 and 112 days and both did just fine. We just need Chloe to grow and repair some of that damaged lung tissue.
Speaking of grow - the weekend doctor decided to give Chloe 1 calorie of fortifier today. She just got back up to full feeds on Friday. Dave and I put a quick stop to that and I had a long conversation with the nurse practitioner this afternoon. She stressed again the importance of calcium and minerals that my milk just can't provide and doesn't think that we're at the point to give up on the human milk fortifier just yet. I can accept that but also want to go a little easier on Chloe. I said I wanted 3 days beetween any changes and she agreed to that. Chloe will get 1 calorie of fortifier tomorrow and, as long as she can tolerate that, shouldn't have another change until Thursday.
Kangaroo time is going just swimmingly, too. Chloe usually has wide eyes for about the first 5-10 minutes and looks all around while I talk to her and then she konks out for the next hour and a half or so. I actually held her for two hours yesterday! Such a treat! I swear, if I didn't have Dave and Solana at home to love on (and they need it, too) I could sit there all day with her. It feels just wonderful to have her tiny little body snuggled up against me. Today she was sucking on her tubes. She really seems to like to suck. I have a feeling that her pacifier will quickly become her best friend as soon as they get those tubes out of her mouth. And maybe, just maybe, she'll be the one to latch on when that time comes. Fingers crossed! I pumped 6 months full time for Solana and now two months for Chloe. If I can get Chloe to latch on I swear I'll do the happy dance and post it on the blog! Oh, and I think Chloe might be a budding musician. She perked up her O's yesterday whenever I hummed scales and arpeggios to her! Is it too early to start planning to live my vicarious life as a professional flautist through her? Just kidding!
The rest of her day was fine, though, thank God. Her oxygen settings are going down ever so slowly. They're hovering around 30-35 right now. She still desat's and needs suctioning every once in a while but it makes sense that the O2 levels in her body drop when she has phlem blocking her breathing tube. (Just imagine breathing through a straw and then getting a wad of phlem stuck in it. How much would that suck?) I spoke with the nurse practitioner today who also reassured me that she recently had babies come off respirators after 89 and 112 days and both did just fine. We just need Chloe to grow and repair some of that damaged lung tissue.
Speaking of grow - the weekend doctor decided to give Chloe 1 calorie of fortifier today. She just got back up to full feeds on Friday. Dave and I put a quick stop to that and I had a long conversation with the nurse practitioner this afternoon. She stressed again the importance of calcium and minerals that my milk just can't provide and doesn't think that we're at the point to give up on the human milk fortifier just yet. I can accept that but also want to go a little easier on Chloe. I said I wanted 3 days beetween any changes and she agreed to that. Chloe will get 1 calorie of fortifier tomorrow and, as long as she can tolerate that, shouldn't have another change until Thursday.
Kangaroo time is going just swimmingly, too. Chloe usually has wide eyes for about the first 5-10 minutes and looks all around while I talk to her and then she konks out for the next hour and a half or so. I actually held her for two hours yesterday! Such a treat! I swear, if I didn't have Dave and Solana at home to love on (and they need it, too) I could sit there all day with her. It feels just wonderful to have her tiny little body snuggled up against me. Today she was sucking on her tubes. She really seems to like to suck. I have a feeling that her pacifier will quickly become her best friend as soon as they get those tubes out of her mouth. And maybe, just maybe, she'll be the one to latch on when that time comes. Fingers crossed! I pumped 6 months full time for Solana and now two months for Chloe. If I can get Chloe to latch on I swear I'll do the happy dance and post it on the blog! Oh, and I think Chloe might be a budding musician. She perked up her O's yesterday whenever I hummed scales and arpeggios to her! Is it too early to start planning to live my vicarious life as a professional flautist through her? Just kidding!
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