The surgery went really well this morning. From the time they made the incision to the time the surgeon came out to see us was only 25 minutes! I'm pretty sure I wasn't holding my breath when he spoke to us but as soon as he walked away I exhaled a huge sigh of relief (figuratively AND literally)!
There were no complications, no blood loss, etc. and he put two clamps in her to close the PDA. She's been pretty sleepy all day. They're giving her some narcotic pain medicine to keep her comfortable. Her respiration seems good. Now we need to wait for her to recover and finish moving the contrast out of her body so they can do the next contrast study and get those feedings started.
Thank you all for your prayers and messages. Your love and support really does help me get through the day and means a lot! And I know Chloe can feel all your love flowing straight into her isolette each and every time you think of her!
Love to you all,
Cyndi
P.S. Dave and I are really missing our private room at Miami Valley. Maybe it wouldn't be so bad if the couple right next to us wasn't caughing all the time! The nurse said it had been addressed and they've been screened. It's only "smoker's cough" but geez people! (Sorry - I just had to vent...)
Thursday, October 8, 2009
Wednesday, October 7, 2009
Day 45 - PDA
I don't even know what to write. I feel like I've been emotionally beat up like an old punching bag. They said the NICU would be a hard ride, a roller coaster, a long and difficult road. They really weren't exaggerating. Yesterday felt so good. Today feels just as bad.
Out of the blue...Chloe's PDA is "huge." She needs surgery on her heart. It will be tomorrow or the day after. Want to explain it...can't now.
Out of the blue...Chloe's PDA is "huge." She needs surgery on her heart. It will be tomorrow or the day after. Want to explain it...can't now.
Tuesday, October 6, 2009
Update - Kangaroo Time!
The update from this morning is: although I wasn't completely accurate this morning in my statement about "no surgery" things are still looking good.
The "study" they did on Chloe this morning involved a barium enema being forced up her rear and monitored using x-rays. The radiologist did not see a blockage caused by a narrowing of the intestines or by scar tissue from her earlier rupture. What she saw was some compacted poop that appeared to be blocking her intestines.
Upon speaking with the neonatologist early this afternoon I learned that we need to wait for Chloe to "move" her bowels and poop out all the barium from this morning's study so that they could proceed with the next study - another barium study but this time it will be placed in her stomach and watched on it's way down the intestines. It is possible that there may be a stricture in her small intestines that they couldn't see this morning but that they might see with the second study. Chloe needed to poop before they could do that and, fortunately, she had a big diaper full of poop when I changed her!
They did another x-ray after the poop and this time the surgeon took a look. And what he saw was probably the most encouraging thing today. He saw that the original barium enema went all the way up to her stomach! That's a great sign that could mean there is no blockage at all! Please keep praying that this is the case. They will move forward with the next barium study tomorrow and we want it to move from her stomach and all the way down her small and large intestines!
Once they verify the absence of blockage they can begin feedings. We really need Chloe to start eating so her poor liver can start healing and so she can start growing. Once she gets stronger and grows perhaps her lungs will get better. They're doing amazingly well right now because she's on steroids but they'll take her off of steroids pretty soon.
Picture of Chloe's ambulance on the way to Children's Medical Center this morning.
During her barium study this morning. Thank God for the steady and sure hands of the pediatric radiologist. I can't imagine the kind of control necessary to force fluid up and through the intestines of a 2lb 3oz baby without damaging them.
Walking quickly from radiology to the NICU - Chloe's new home.
The hospitals all have a new policy for the flu season. Only parents/grandparents are allowed to visit. No children. While this makes it more difficult for us to visit Chloe we're glad for the extra precautions against germs. Unfortunately, I couldn't be there this morning but my friend, Angela, watched Solana for several hours this afternoon, though, so I could stop by for a visit. Thank you Angela!
This visit turned out to be ridiculously exciting for me! The nurse let me have kangaroo time with Chloe for the first time! I almost cried when she offered. I ended up spending over an hour with my precious little miracle on my chest and she's already such a good little girl. She did just great for her Mommy! I can't even begin to describe how special that was. Instead, I'll share a picture.
The "study" they did on Chloe this morning involved a barium enema being forced up her rear and monitored using x-rays. The radiologist did not see a blockage caused by a narrowing of the intestines or by scar tissue from her earlier rupture. What she saw was some compacted poop that appeared to be blocking her intestines.
Upon speaking with the neonatologist early this afternoon I learned that we need to wait for Chloe to "move" her bowels and poop out all the barium from this morning's study so that they could proceed with the next study - another barium study but this time it will be placed in her stomach and watched on it's way down the intestines. It is possible that there may be a stricture in her small intestines that they couldn't see this morning but that they might see with the second study. Chloe needed to poop before they could do that and, fortunately, she had a big diaper full of poop when I changed her!
They did another x-ray after the poop and this time the surgeon took a look. And what he saw was probably the most encouraging thing today. He saw that the original barium enema went all the way up to her stomach! That's a great sign that could mean there is no blockage at all! Please keep praying that this is the case. They will move forward with the next barium study tomorrow and we want it to move from her stomach and all the way down her small and large intestines!
Once they verify the absence of blockage they can begin feedings. We really need Chloe to start eating so her poor liver can start healing and so she can start growing. Once she gets stronger and grows perhaps her lungs will get better. They're doing amazingly well right now because she's on steroids but they'll take her off of steroids pretty soon.
Picture of Chloe's ambulance on the way to Children's Medical Center this morning.
During her barium study this morning. Thank God for the steady and sure hands of the pediatric radiologist. I can't imagine the kind of control necessary to force fluid up and through the intestines of a 2lb 3oz baby without damaging them.
Walking quickly from radiology to the NICU - Chloe's new home.
The hospitals all have a new policy for the flu season. Only parents/grandparents are allowed to visit. No children. While this makes it more difficult for us to visit Chloe we're glad for the extra precautions against germs. Unfortunately, I couldn't be there this morning but my friend, Angela, watched Solana for several hours this afternoon, though, so I could stop by for a visit. Thank you Angela!
This visit turned out to be ridiculously exciting for me! The nurse let me have kangaroo time with Chloe for the first time! I almost cried when she offered. I ended up spending over an hour with my precious little miracle on my chest and she's already such a good little girl. She did just great for her Mommy! I can't even begin to describe how special that was. Instead, I'll share a picture.
Day 44 - No blockage or surgery
I usually post at night but this is just too good to wait. I want to let all of you praying geniuses out there that this morning went really well! They transported Chloe to Dayton Children's Hospital. The radiologist did the barium enema and watched it move through her intestines. She did NOT - I repeat - did NOT find scar tissue or a stricture in her intestines causing a blockage. What she found was some compacted poop. She was so certain that Chloe does NOT need surgery, in fact, that she was about to send her back to Miami Valley Hospital!
Dave had the head doctor over there get in touch with Chloe's doctor at Miami Valley, though, and they decided to keep her at Children's for the time being. They said that Chloe needs to poop and she's done that. They'll do another x-ray to see how things look and then the plan is to try feeding her again. I'll try to post again tonight!
Dave had the head doctor over there get in touch with Chloe's doctor at Miami Valley, though, and they decided to keep her at Children's for the time being. They said that Chloe needs to poop and she's done that. They'll do another x-ray to see how things look and then the plan is to try feeding her again. I'll try to post again tonight!
Monday, October 5, 2009
Day 43 - New Vent and...Pacifier!
The steroids seem to have worked for Chloe. They were able to wean her off the oscillator and put her on the conventional respirator today. She's been on the conventional for about two hours now and her O2 saturation is currently at 95% with her settings only in the 30's. This is pretty darn good. If she can maintain this then she'll be able to stay on the conventional. I've heard that some babies become "steroid dependant" but the doctor will wean her off the steroids instead of stopping cold turkey. Hopefully, this will prevent that.
Children's Hospital will pick her up for transport to some time after 7am tomorrow and take her straight to her barium enema - scheduled for 8am in the morning. Let's hope for the best possible outcome tomorrow.
In addition, Chloe is on medication for a yeast infection under her neck. This is common with premies. They live in a warm humid environment that's just perfect for yeast to take hold. She's receiving cream treatment to the site and medication. The combination of this medicine and steroids can be rough on her stomach so the doctor is giving her 1cc "feedings" just to coat and protect her stomach.
Finally, the doctor talked to me about Chloe's eyes today. She had her first scheduled eye exam this morning and they discovered some scar tissue in her eyes. They don't yet know what this will do to her vision, if anything, but want to do some tests and watch it.
Whew! Seems like there's a lot going on today. Just visiting with Chloe was eventful. When I got there she was laying on her back with a pacifier in her mouth and I could see her little tongue working to move it up and down. So cute! I had just barely put my hands in the isolette when my phone rang and I answered it so I was drying my hands from a "rewash" when Chloe's O2 saturation just plumeted from 95% to 50%. The nurse and I both jumped to look in the isolette and saw that Chloe was just fit to be tied. Her face was purple and all squinched up from crying and all four limbs were flailing like I'd never seen before. The nurse tried to tuck her arms and legs back in but that did no good what-so-ever so she ran out to get the respiratory therapist. I went to put my hands on Chloe and noticed the pacifier laying by her head. I quickly put it in her mouth and - VOILA! It was like magic! I could hardly believe it. She was actually throwing a fit because she'd lost her pacifier!
Now, this has ocurred to me before but never did I KNOW. At that moment I KNEWthat Chloe will be the most spoiled child this planet has ever seen. Making her happy by giving her the pacifier was probably the most gratifying thing I've ever done for her. How could I EVER tell her "no?" Solana's pacifiers went in the trash can the day she turned 2. Come back in two years to find out if I can do the same for Chloe...
By the way, most of you realize this but I should have explained something about the commercial I mentioned in yesterday's post.... Chloe's twin sister's name: Leila.
Children's Hospital will pick her up for transport to some time after 7am tomorrow and take her straight to her barium enema - scheduled for 8am in the morning. Let's hope for the best possible outcome tomorrow.
In addition, Chloe is on medication for a yeast infection under her neck. This is common with premies. They live in a warm humid environment that's just perfect for yeast to take hold. She's receiving cream treatment to the site and medication. The combination of this medicine and steroids can be rough on her stomach so the doctor is giving her 1cc "feedings" just to coat and protect her stomach.
Finally, the doctor talked to me about Chloe's eyes today. She had her first scheduled eye exam this morning and they discovered some scar tissue in her eyes. They don't yet know what this will do to her vision, if anything, but want to do some tests and watch it.
Whew! Seems like there's a lot going on today. Just visiting with Chloe was eventful. When I got there she was laying on her back with a pacifier in her mouth and I could see her little tongue working to move it up and down. So cute! I had just barely put my hands in the isolette when my phone rang and I answered it so I was drying my hands from a "rewash" when Chloe's O2 saturation just plumeted from 95% to 50%. The nurse and I both jumped to look in the isolette and saw that Chloe was just fit to be tied. Her face was purple and all squinched up from crying and all four limbs were flailing like I'd never seen before. The nurse tried to tuck her arms and legs back in but that did no good what-so-ever so she ran out to get the respiratory therapist. I went to put my hands on Chloe and noticed the pacifier laying by her head. I quickly put it in her mouth and - VOILA! It was like magic! I could hardly believe it. She was actually throwing a fit because she'd lost her pacifier!
Now, this has ocurred to me before but never did I KNOW. At that moment I KNEWthat Chloe will be the most spoiled child this planet has ever seen. Making her happy by giving her the pacifier was probably the most gratifying thing I've ever done for her. How could I EVER tell her "no?" Solana's pacifiers went in the trash can the day she turned 2. Come back in two years to find out if I can do the same for Chloe...
By the way, most of you realize this but I should have explained something about the commercial I mentioned in yesterday's post.... Chloe's twin sister's name: Leila.
Sunday, October 4, 2009
Day 42 - Milk Didn't Take
Well, they gave Chloe a chance to show us that she doesn't have an obstruction or narrowing. She gave a valiant effort but just couldn't do it.
They took her off milk again on Friday night and started her on some steroids Saturday. The hope is that the steroids improve her lungs enough to take her off the oscillator. Once she's off the oscillator and stable enough for transport she will be moved to Dayton Children's Hospital. We think that may happen Monday evening. There they will use pressure to move some fluid through her intestines backward (ie. from the rear) in an attempt to locate an obstruction or narrowing. Hopefully, it's something as simple as a bit of meconium blockage that is removed/corrected with the procedure. If it's a blockage created by scar tissue (from her original rupture) then they'll need to do surgery to remove the section of blocked intestine. I trust you can guess which one we're hoping and praying for.
As we're preparing for this move we saw our first commercial for Dayton Children's Hospital. The commercial began with the name "Layla" scripted on the screen and then shows a baby and her mother. The mother spoke emotionally about how Layla was born very early and spend 101 days in the NICU. If it weren't for the amazing care they offered and the fact that surgeons were on hand and prepared to give Layla the care she needed she wouldn't be here today. Weird, huh? It almost seemed like a sign for us to feel good about this move...
They took her off milk again on Friday night and started her on some steroids Saturday. The hope is that the steroids improve her lungs enough to take her off the oscillator. Once she's off the oscillator and stable enough for transport she will be moved to Dayton Children's Hospital. We think that may happen Monday evening. There they will use pressure to move some fluid through her intestines backward (ie. from the rear) in an attempt to locate an obstruction or narrowing. Hopefully, it's something as simple as a bit of meconium blockage that is removed/corrected with the procedure. If it's a blockage created by scar tissue (from her original rupture) then they'll need to do surgery to remove the section of blocked intestine. I trust you can guess which one we're hoping and praying for.
As we're preparing for this move we saw our first commercial for Dayton Children's Hospital. The commercial began with the name "Layla" scripted on the screen and then shows a baby and her mother. The mother spoke emotionally about how Layla was born very early and spend 101 days in the NICU. If it weren't for the amazing care they offered and the fact that surgeons were on hand and prepared to give Layla the care she needed she wouldn't be here today. Weird, huh? It almost seemed like a sign for us to feel good about this move...
Friday, October 2, 2009
Day 40 - Still trying waiting trying
I usually lay with Solana for a few minutes each night before she falls asleep and, apparently, fell asleep in her bed last night. I woke up at 2am and my throbbing chest told me I'd missed an appointment with the pump. That was my first stop on the way back to bed.
You can see that her belly looks really distended here. This is partially because of her dilated bowels but also because of her enlarged liver - enlarged because of the IV nutrition she's been on for 5 weeks. She's up to 2lbs 5oz now. And look at those beautiful eyes. This picture was taken right after a sponge bath.
My second stop was to call to check up on Chloe and this is what I found: Feedings every three hours were too much for her system because they started pulling up milk and decided to stop feedings. Yikes! Needless to say I didn't get right back to sleep. I had a bit of worrying and praying to do...
But during rounds today the doctor decided to start feedings every six hours again and administer a glycerine enema. The hope is that, if her system is just slow, the enema will get her system "moving." It produced a big meconium movement right away and another smaller one at 6pm. We're really hoping that this helps because they also pulled up some milk during her 6pm feeding. We still don't know if there's an obstruction in her intestines. If only this milk will get digesting so that we can determine there isn't one...
Please pray for Chloe.
You can see that her belly looks really distended here. This is partially because of her dilated bowels but also because of her enlarged liver - enlarged because of the IV nutrition she's been on for 5 weeks. She's up to 2lbs 5oz now. And look at those beautiful eyes. This picture was taken right after a sponge bath.
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