Now, this video is truly cute, but it's also six minutes long. We're not bathing experts by any means, but Meg seems to have it down cold. So, I thought I'd share it in case anyone needed a quick video lesson. The few crying parts are pretty funny, mostly because it's now something between a realy baby cry and cat that just had its tailed stepped on :)
Saturday, October 1, 2011
Carving Out A Slice
I can't believe I haven't posted anything in over a week. What in the heck happened to all of my time? Our girls aren't even home yet and I'm already finding it difficult to keep up with the blog. Perhaps it's just that it's the end of the quarter again and this will always be a busy time of the year or, perhaps, it's just the name of the game with our new life.
Sophie, Izzy, and Maddy, if you're reading this, you're probably wondering why I'm making such a big deal out of not having shared your latest triumphs in over a week. You're probably just reading these posts in sequence with no real concept of the amount of time between posts. Well, at this point in your life, in 2011, with all of you still in the NICU and family members and friends clamoring for details, a week without an update seems like an eternity. People are on edge! Especially, your nana. I've had some free time at night between work and sleep, but your mom and I have been spending it with you. In fact, your mom is there ALL of the time. So much in fact that they just let her sleep there when she needs to.
So, everyone else will just have to wait....until now. Now, we have photos of bathtime (Sophia), first feedings (Madelyn), and photos with mom and dad outside of the isolette (Isabelle). There's even a "How-To" bath video starring Sophia. I think the last video was of Sophia, too. This time, dad was giving Maddy a bath and mom was busy holding Isabelle, so there was no one to operate the camera. Hey, I can't do it all! Wait, maybe I can. Don't worry Maddy and Izzy, you'll get your chance at bath stardom.
On to the girls. The one consistent theme with all three of them is how quickly they're putting on weight. Sophia is up to 4 lbs 6 oz, Madelyn is up to 4 lbs 2 oz, and Isabelle is up to 3 lbs.
Miss Isabelle has finally stabilized enough for us to be spending some time with her outside of the isolette. She's still getting the occasional pain med when she visually appears uncomfortable, but at this point she's going days at a time without them. During the times she's off the pain meds she's alert and awake, which makes spending time with her so much fun! She's breathing with the cannula and a little higher oxygen than what's in room air, and she's been off of the breathing tube for awhile. We still need lots of prayers for her, though.
She's doing much better since her surgery. She's recovering very well and back to her happy, itty-bitty self. We misunderstood what happened with the perforations in the last surgery, and it turns out that they only cut one of them out. The other 3 were left in because they were in an important part of the bowel and the doctors wanted to give them a chance to heal to see if they could save that section. The good news is, as of today, the three remaining perforations have healed. Yeah! One small victory for Isabelle!
Although there are so many things going well for her, she's not out of the woods yet. The doctors have tried trophic feeds with her twice. These feeds are so small their purpose is to stimulate her digestive system even though there is no caloric value to them. Unfortunately, Isabelle was not able to tolerate even this small volume of feeding.
Over the last few days the doctors have been doing GI studies to check for obstructions and to try to figure out why her bowel is not processing these tiny feeds. The good news is they have not found any obstructions. We're waiting on the results from the second assessment still, but at this point the surgeon feels it will show the same results. Not having obstructions is great news, but it brings us back to asking why she's not tolerating these feeds if there isn't an obstruction. The conclusion seems to be that the bowel does not have motility at this point. The doctors are hoping that over the next few months, as they try feedings again and again, eventually her bowel will start to work. We need this to happen in order for her to sustain life, so once again we need prayers for her to be strong and make it over this hurdle so she can come home with her sisters. The hopeful news is that the feedings did eventually move through the bowel. They just took an extremely long time. Without eating, her liver is getting damaged also. All of the damage is reversible if she starts to eat before it progresses too far.
Mom, Dad, and Izzy getting some time out of the incubator
Izzy paying some extra attention to Meg
Miss Madelyn has been making a lot of progress, too. The last time I posted, only Sophia had made her first go with the bottle. At the time of this post, not only has Maddy been working with the bottle, but she's also began breast feeding! It's amazing how tired she gets when she actually has to work for her food. I guess it's pretty easy to just lay their and get more plump through the NG tube. When you actually have to suck for the food, it's apparently pretty darn exhausting.
Maddy at the beginning of her feeding
Maddy at the end of her feeding (with some milk making its escape out of the corner of her mouth)
Maddy is also doing very well outside of her isolette and is thriving in the open air crib. On a more serious note, Maddy had a major "blow out" the other night and we missed it! Apparently, in the middle of her diaper changing, she decided that she wasn't exactly done and decided to make herself more comfortable at her nurse's expense, as well as the cribs' walls.
Maddy and her fuzzy hair after the bath
Last up, is Miss Sophia. She, like her sister, kept her nurse busy (and disgusted) with a room-clearing, crib-changing, bath-inducing poop. Is it unrealistic to think that they'll get this all out of their system before they come home?
She's also doing extremely well with bottle/breast feeding. In fact, just today, she took her entire feeding from the breast (~38 mL). Before she can come home, she has to go five days without an episode from feeding. She also has to be awake during her feeding times and take it completely from the bottle/breast so they can remove the NG tube. She's probably not too far off, but probably still has a couple of weeks to go.
Waaaaaay at the beginning of the post, I mentioned bathtime. Well, she is doing great with her baths, especially with the help of the massive heater over her crib....which we won't have at home. She was a little fussy at times, but she sure looks cute. See for yourselves!
Sophie, Izzy, and Maddy, if you're reading this, you're probably wondering why I'm making such a big deal out of not having shared your latest triumphs in over a week. You're probably just reading these posts in sequence with no real concept of the amount of time between posts. Well, at this point in your life, in 2011, with all of you still in the NICU and family members and friends clamoring for details, a week without an update seems like an eternity. People are on edge! Especially, your nana. I've had some free time at night between work and sleep, but your mom and I have been spending it with you. In fact, your mom is there ALL of the time. So much in fact that they just let her sleep there when she needs to.
So, everyone else will just have to wait....until now. Now, we have photos of bathtime (Sophia), first feedings (Madelyn), and photos with mom and dad outside of the isolette (Isabelle). There's even a "How-To" bath video starring Sophia. I think the last video was of Sophia, too. This time, dad was giving Maddy a bath and mom was busy holding Isabelle, so there was no one to operate the camera. Hey, I can't do it all! Wait, maybe I can. Don't worry Maddy and Izzy, you'll get your chance at bath stardom.
On to the girls. The one consistent theme with all three of them is how quickly they're putting on weight. Sophia is up to 4 lbs 6 oz, Madelyn is up to 4 lbs 2 oz, and Isabelle is up to 3 lbs.
Miss Isabelle has finally stabilized enough for us to be spending some time with her outside of the isolette. She's still getting the occasional pain med when she visually appears uncomfortable, but at this point she's going days at a time without them. During the times she's off the pain meds she's alert and awake, which makes spending time with her so much fun! She's breathing with the cannula and a little higher oxygen than what's in room air, and she's been off of the breathing tube for awhile. We still need lots of prayers for her, though.
She's doing much better since her surgery. She's recovering very well and back to her happy, itty-bitty self. We misunderstood what happened with the perforations in the last surgery, and it turns out that they only cut one of them out. The other 3 were left in because they were in an important part of the bowel and the doctors wanted to give them a chance to heal to see if they could save that section. The good news is, as of today, the three remaining perforations have healed. Yeah! One small victory for Isabelle!
Although there are so many things going well for her, she's not out of the woods yet. The doctors have tried trophic feeds with her twice. These feeds are so small their purpose is to stimulate her digestive system even though there is no caloric value to them. Unfortunately, Isabelle was not able to tolerate even this small volume of feeding.
Over the last few days the doctors have been doing GI studies to check for obstructions and to try to figure out why her bowel is not processing these tiny feeds. The good news is they have not found any obstructions. We're waiting on the results from the second assessment still, but at this point the surgeon feels it will show the same results. Not having obstructions is great news, but it brings us back to asking why she's not tolerating these feeds if there isn't an obstruction. The conclusion seems to be that the bowel does not have motility at this point. The doctors are hoping that over the next few months, as they try feedings again and again, eventually her bowel will start to work. We need this to happen in order for her to sustain life, so once again we need prayers for her to be strong and make it over this hurdle so she can come home with her sisters. The hopeful news is that the feedings did eventually move through the bowel. They just took an extremely long time. Without eating, her liver is getting damaged also. All of the damage is reversible if she starts to eat before it progresses too far.
Mom, Dad, and Izzy getting some time out of the incubator
Izzy paying some extra attention to Meg
Miss Madelyn has been making a lot of progress, too. The last time I posted, only Sophia had made her first go with the bottle. At the time of this post, not only has Maddy been working with the bottle, but she's also began breast feeding! It's amazing how tired she gets when she actually has to work for her food. I guess it's pretty easy to just lay their and get more plump through the NG tube. When you actually have to suck for the food, it's apparently pretty darn exhausting.
Maddy at the beginning of her feeding
Maddy at the end of her feeding (with some milk making its escape out of the corner of her mouth)
Maddy is also doing very well outside of her isolette and is thriving in the open air crib. On a more serious note, Maddy had a major "blow out" the other night and we missed it! Apparently, in the middle of her diaper changing, she decided that she wasn't exactly done and decided to make herself more comfortable at her nurse's expense, as well as the cribs' walls.
Maddy and her fuzzy hair after the bath
Last up, is Miss Sophia. She, like her sister, kept her nurse busy (and disgusted) with a room-clearing, crib-changing, bath-inducing poop. Is it unrealistic to think that they'll get this all out of their system before they come home?
She's also doing extremely well with bottle/breast feeding. In fact, just today, she took her entire feeding from the breast (~38 mL). Before she can come home, she has to go five days without an episode from feeding. She also has to be awake during her feeding times and take it completely from the bottle/breast so they can remove the NG tube. She's probably not too far off, but probably still has a couple of weeks to go.
Waaaaaay at the beginning of the post, I mentioned bathtime. Well, she is doing great with her baths, especially with the help of the massive heater over her crib....which we won't have at home. She was a little fussy at times, but she sure looks cute. See for yourselves!
Thursday, September 29, 2011
Blog Update Forthcoming
Sorry folks. It's been a crazy week. There's lot to share with our girls, but I won't have an opportunity to write a post or process the photos and videos until tonight.
Thursday, September 22, 2011
Our Growing Girls
Wow, it's already Thursday. I've been in Boston most of the week for customer meetings and had absolutely no time to draft an update. Sorry about that. Meg's been keeping me updated from her trips to the NICU so I'll share everything in a quick update before I hop on the plane.
These kids are putting on weight like it's their job. Well, I guess it really is kind of their job at this point in their life. Get to work girls! Sophia is up to 3 lbs 12 oz., Isabelle is up to 2 lbs 11 oz., and Madelyn is up to 3 lbs 10 oz.
Sophia and Madelyn both had the opportunity to come out of the isolette into an open-air crib/basinette. Sophia handled it well, but Madelyn needed to go back into the isolette. When I say "handled it," I meant that Sophia was able to keep her body temperature regulated outside of the isolette without losing weight. If they're losing weight, it means that their bodies are having to work too hard to stay warm. Sophia's doing well with it, but Maddy needs to get a little bigger.
Maddy posing for the camera.
She sure looks like she's putting on some weight to me.
Isabelle getting some well deserved rest.
Also, Sophia started bottle feeding yesterday. They fill up the bottle with the full feeding, allow her to drink as much as she can from the bottle, then put the rest through the NG tube. Madelyn should be starting within the next day or two.
Sophia getting her first bottle.
Sophia enjoying some kangaroo time with Meg.
I know I read somewhere that preemies can't smile. I'll let you decide if that's true.
Maddy getting some love from mom.
Lastly, Isabelle had to be re-intubated earlier in the week as she had a small procedure to help relieve some additional gas build up. She was just extubated and seems to be doing better. The docs also said that she has cholestasis, which is a condition where the flow of bile from the liver is blocked. They finally gave her the first dose of breast milk. They're giving it to her 1 ml at a time every six hours. This should help with the cholestasis and should also help kick-start her intestinal functions again.
Other than that, just another interesting week in the NICU. Enjoy the pics and I'll update more over the weekend!
These kids are putting on weight like it's their job. Well, I guess it really is kind of their job at this point in their life. Get to work girls! Sophia is up to 3 lbs 12 oz., Isabelle is up to 2 lbs 11 oz., and Madelyn is up to 3 lbs 10 oz.
Sophia and Madelyn both had the opportunity to come out of the isolette into an open-air crib/basinette. Sophia handled it well, but Madelyn needed to go back into the isolette. When I say "handled it," I meant that Sophia was able to keep her body temperature regulated outside of the isolette without losing weight. If they're losing weight, it means that their bodies are having to work too hard to stay warm. Sophia's doing well with it, but Maddy needs to get a little bigger.
Maddy posing for the camera.
She sure looks like she's putting on some weight to me.
Isabelle getting some well deserved rest.
Also, Sophia started bottle feeding yesterday. They fill up the bottle with the full feeding, allow her to drink as much as she can from the bottle, then put the rest through the NG tube. Madelyn should be starting within the next day or two.
Sophia getting her first bottle.
Sophia enjoying some kangaroo time with Meg.
I know I read somewhere that preemies can't smile. I'll let you decide if that's true.
Maddy getting some love from mom.
Lastly, Isabelle had to be re-intubated earlier in the week as she had a small procedure to help relieve some additional gas build up. She was just extubated and seems to be doing better. The docs also said that she has cholestasis, which is a condition where the flow of bile from the liver is blocked. They finally gave her the first dose of breast milk. They're giving it to her 1 ml at a time every six hours. This should help with the cholestasis and should also help kick-start her intestinal functions again.
Other than that, just another interesting week in the NICU. Enjoy the pics and I'll update more over the weekend!
Saturday, September 17, 2011
The Signs Are Trending Up
I feel like I just posted the video of Miss Sophia's "blow-out." Alas, three days have already passed. It's amazing how the days seemingly run together and how difficult it's becoming to associate the smaller details with the correct day. I'm sure it will only get worse with more memories and more days. It's a good thing we have this blog to keep us straight :)
We began the day early with our minds set on scoring some major finds at one of the many multiples resale events that just happened to all fall on the same day. Honestly, we were a little disappointed with the lack of interesting selection. They definitely weren't worth sacrificing our one day to sleep in. I have to admit, I think we probably missed out on some really good triplet stuff by not going to the "sales preview" on Friday night. Meg mentioned it to me, but when I didn't see it mentioned on the information post, I thought she was just making stuff up. I guess I should listen to my wife a little more ;-) The most exciting part about the whole outing this morning was that we finally got to meet a triplet mom, in person, who we've "known" on facebook for the last several months. Shelli, if you're reading this, it was great to finally meet you and we definitely plan on taking you up on your offer to visit with your family so we can get a glimpse into our future, especially if we go for a bonus baby!
So, we have some good news to share about the girls! First, they're all growing like a weed in a bare spot in your yard. Sophia is now 3 lbs 7 oz, Madelyn weighs 3 lbs 4 oz, and Isabelle weighs 2 lbs 3 oz. If you recall, Sophia came out weighing 2 lbs 15 oz, Madelyn weighed 2 lbs 8 oz, and Isabelle weighed a mere 1 lb 7 oz. Those are net gains of 8 oz, 12 oz, and 12 oz, respectively.
Sophia
Isabelle
Madelyn
Izzy had her breathing tube removed on Friday and is doing extremely well with the nasal cannula. I'm not sure if the fact that she's still due for at least one more surgery--to re-unite both sides of her intestines--will play a role in their breathing plan for her, but, for now, I can't see why she wouldn't be completely on room air within the week.
Her stomach looked quite red today and is still pretty swollen from the surgery. My mom reminded me today that, just a week ago, they had her entire intestinal tract outside of her belly so they could check for perforations and that it's probably still a little irritated. While we were there this afternoon, we also watched Nurse Erin change Izzy's colostomy bag. When she removed the bag from the skin, you could actually see her intestine sticking through the incision in her belly. I've never seen anything like it. My first thought was, "Wow, that looks horrible!" Then I realized how amazing it was that she was just lying there, looking at me with her eyes wide open, all the while sucking away on her pacifier like she didn't have a care in the world. What a miracle!
To that point, there probably hasn't been a day that's gone by, since they took their first breaths of air, that I haven't thought about how close we came to losing all three of them. It was just a little over 14 weeks ago when we were told that all of our precious babies were too sick to save.
Now, I see them growing and thriving in their isolettes and am so thankful that I've been able to spend so much time with them. Each day, they look bigger and more healthy than the day before. I can't wait to see what they look like tomorrow!
The last piece of potentially really good news is that we finally met with Dr. Sharma today. He works at Rush Medical Center in Chicago, which is one of the top three nationally accredited institutions for their work on, and treatment of, Cystic Fibrosis. The best part of what we heard today was that there is about a 90% chance that we'll never have to visit his office. After looking at our entire case, and taking into consideration the genetic testing that Meg had done during the IVF process to test for CF, as well as some post-TTTS surgery ultrasound observations, and the fact that Sophia is doing extremely well and isn't showing any signs that a baby her age with CF might show, he told us that he's about 90% sure that Izzy and Sophie don't have CF, without even having the gene testing done (sorry for the run on sentence). He said he's been proven wrong before, so we'll still need to wait for the results of the test. We were pretty excited by that news, but with Izzy, she's pretty much made every long-shot bet out there, so we're still going to proceed with the tests.
First, they'll check Sophia's stool to see if an important enzyme is present. Second, they'll do the blood gene test on Isabelle which should test for 99% of the known CF gene mutations. Last, when she's about three months old (adjusted), Dr. Sharma will still want her to do the sweat test.
What also seemed promising is the fact that the most common mutations they test for are the ones that seem to have the greatest impact on one's quality of life. There are many "mild" mutations that could make someone test positive, yet would have limited or almost no impact on their daily lives. Again, we're praying a ton, keeping our thoughts positive, and our fingers crossed!
Today's Random Nugget of Interest: We heard today from another parent in the NICU that the average costs, per child, over a 90-day period in the NICU, was $2.5M. If you work the numbers, that means our babies are costing $2.5M/mo combined! Thank you Unit.ed Hea.lthcare.
We began the day early with our minds set on scoring some major finds at one of the many multiples resale events that just happened to all fall on the same day. Honestly, we were a little disappointed with the lack of interesting selection. They definitely weren't worth sacrificing our one day to sleep in. I have to admit, I think we probably missed out on some really good triplet stuff by not going to the "sales preview" on Friday night. Meg mentioned it to me, but when I didn't see it mentioned on the information post, I thought she was just making stuff up. I guess I should listen to my wife a little more ;-) The most exciting part about the whole outing this morning was that we finally got to meet a triplet mom, in person, who we've "known" on facebook for the last several months. Shelli, if you're reading this, it was great to finally meet you and we definitely plan on taking you up on your offer to visit with your family so we can get a glimpse into our future, especially if we go for a bonus baby!
So, we have some good news to share about the girls! First, they're all growing like a weed in a bare spot in your yard. Sophia is now 3 lbs 7 oz, Madelyn weighs 3 lbs 4 oz, and Isabelle weighs 2 lbs 3 oz. If you recall, Sophia came out weighing 2 lbs 15 oz, Madelyn weighed 2 lbs 8 oz, and Isabelle weighed a mere 1 lb 7 oz. Those are net gains of 8 oz, 12 oz, and 12 oz, respectively.
Sophia
Isabelle
Madelyn
Izzy had her breathing tube removed on Friday and is doing extremely well with the nasal cannula. I'm not sure if the fact that she's still due for at least one more surgery--to re-unite both sides of her intestines--will play a role in their breathing plan for her, but, for now, I can't see why she wouldn't be completely on room air within the week.
Her stomach looked quite red today and is still pretty swollen from the surgery. My mom reminded me today that, just a week ago, they had her entire intestinal tract outside of her belly so they could check for perforations and that it's probably still a little irritated. While we were there this afternoon, we also watched Nurse Erin change Izzy's colostomy bag. When she removed the bag from the skin, you could actually see her intestine sticking through the incision in her belly. I've never seen anything like it. My first thought was, "Wow, that looks horrible!" Then I realized how amazing it was that she was just lying there, looking at me with her eyes wide open, all the while sucking away on her pacifier like she didn't have a care in the world. What a miracle!
To that point, there probably hasn't been a day that's gone by, since they took their first breaths of air, that I haven't thought about how close we came to losing all three of them. It was just a little over 14 weeks ago when we were told that all of our precious babies were too sick to save.
Now, I see them growing and thriving in their isolettes and am so thankful that I've been able to spend so much time with them. Each day, they look bigger and more healthy than the day before. I can't wait to see what they look like tomorrow!
The last piece of potentially really good news is that we finally met with Dr. Sharma today. He works at Rush Medical Center in Chicago, which is one of the top three nationally accredited institutions for their work on, and treatment of, Cystic Fibrosis. The best part of what we heard today was that there is about a 90% chance that we'll never have to visit his office. After looking at our entire case, and taking into consideration the genetic testing that Meg had done during the IVF process to test for CF, as well as some post-TTTS surgery ultrasound observations, and the fact that Sophia is doing extremely well and isn't showing any signs that a baby her age with CF might show, he told us that he's about 90% sure that Izzy and Sophie don't have CF, without even having the gene testing done (sorry for the run on sentence). He said he's been proven wrong before, so we'll still need to wait for the results of the test. We were pretty excited by that news, but with Izzy, she's pretty much made every long-shot bet out there, so we're still going to proceed with the tests.
First, they'll check Sophia's stool to see if an important enzyme is present. Second, they'll do the blood gene test on Isabelle which should test for 99% of the known CF gene mutations. Last, when she's about three months old (adjusted), Dr. Sharma will still want her to do the sweat test.
What also seemed promising is the fact that the most common mutations they test for are the ones that seem to have the greatest impact on one's quality of life. There are many "mild" mutations that could make someone test positive, yet would have limited or almost no impact on their daily lives. Again, we're praying a ton, keeping our thoughts positive, and our fingers crossed!
Today's Random Nugget of Interest: We heard today from another parent in the NICU that the average costs, per child, over a 90-day period in the NICU, was $2.5M. If you work the numbers, that means our babies are costing $2.5M/mo combined! Thank you Unit.ed Hea.lthcare.
Wednesday, September 14, 2011
A Surprise For Daddy
We just returned from our nightly date in the NICU which ended up being much more fun than we expected :)
Let’s begin with a quick Izzy update. As you know, the surgery went well. They found and removed the four perforations she had in her bowel and suggested we have her tested for Cystic Fibrosis. Nothing much has happened with that since the surgery. The neonatologist wanted to see the results of Meg's screening before deciding how to move forward with their testing. The doctor we spoke with also let us know the testing takes about a month to get results back, so I don’t expect we’ll have an update on this for a while.
Since surgery, all is well and going as expected. Her blood pressure was low and heart rate was high, but they have been able to get that under control over the last few days. She is starting to have bowel movements into the colostomy bag, which is great. She is very swollen as a result of the surgery, but that is starting to go down already, too. Today, they decreased her pain meds and her ventilator settings. They will continue to wean the vent settings and the pain meds until they decide to switch her back to the nasal cannula. She’s starting to open her eyes and become a bit more aware, but she is still sedated. She seems comfortable at this point, which is great to see after all the agitation she had before the surgery. Each day, the doctor checks in with her and sets a new plan for that day. She should be off of the ventilator within a week after surgery and they plan to start feeding her sometime soon after that.
Our milestone for the day was with Madelyn. Her nasal cannula was taken out this morning at 9am. This is their second attempt at taking it out. The first time she did well at first, but then she got tired and began to desat and have episodes with apnea. So far so good this time. The nurses told us if she makes it 24 hours she should be able to keep it off. I’m keeping my fingers crossed it doesn’t happen again and that she’ll still be cannula free in the morning.
The highlight of the evening though, was definitely with Sophia. Her nurse had her all ready for us to hold. It was my turn with her tonight, so I sat in the rocker with her and Meg sat nearby waiting for Maddy to be ready. What unfolded next will live in infamy. It went a little something like this.
After hearing where this conversation was going, Meg decided this might be a great family moment to capture on video. What follows could never be described with mere words and will haunt my memories for years to come.
Jeremy: "Honey, do you smell that?" a few seconds go by
Jeremy: "Meg, did you fart?"
Meghan: "No, did you?"
Jeremy: "No." a few more seconds go by
Jeremy: "Do you think it was the nurse? Maybe she farted and walked away?"
Jeremy: "Are any of the nurses eating egg salad over there?
Meghan: "No, I don't see anyone eating over there."
Jeremy: I proceed to lift up a swaddled Sophia up closer to Meg's nose "Meg, smell her. Is it coming from her?"
Meghan: "Maybe. Something's definitely funky."
Jeremy: "Nurse Julie, we need a second opinion. Can you smell down by her feet?"
Julie: "Sure." she proceeds to inhale "Yeah, something's not right down there."
After hearing where this conversation was going, Meg decided this might be a great family moment to capture on video. What follows could never be described with mere words and will haunt my memories for years to come.
Sunday, September 11, 2011
Keeping Us On Our Toes (by Meghan)
What a day! We finally got through the surgery that has been looming on the horizon for weeks. I feel so relieved to be on the other side and finally have some answers. Unfortunately, with the answers came more questions. As you know, nothing with Isabelle is typical, so why should that change now :)
Let’s start with the general update of today’s surgery. They took her back to surgery at 4:45 pm and she was done by 5:45, which was much quicker than we expected. The doctors found four perforations close together and removed them. The first part of the bowel before the resection was brought to the skin and connected to a colostomy bag. The other section was also brought to the skin. That part will just hang out and heal as long as the bag is in. In a few weeks or a month or so, they’ll go back in and reattach the two parts of the bowel so she can start to have more normal bowel functions. There will, of course, be some issues with feeding and passing stools and getting it back to normal function, but she will slowly get better and better with time.
Here’s the great news:
- They are confident they found and removed all the problem areas, so she can finally start the healing process.
- She looks so much better! I was prepared to start bawling when I saw her, but I was actually overcome with joy. Her tummy was so stretched out prior to surgery. It looked very swollen and painful. Post-surgery it looks much more normal and less painful. The doctor said she should have the ventilator off in a few days and start eating soon after that. We’re finally on the road to recovery for her after spending her first 3 weeks of life not knowing what was going on and just waiting and waiting. Being on this side of it feels much better.
- They are sure it was not NEC. They found no sign of infection and the perforations have nothing to do with NEC. Yeah! One small victory for our Izzy!
Here is the scary part and the reason Izzy’s still keeping us on our toes and needing lots more prayers: The surgeon feels since it is not NEC, we have to ask ourselves why this happened. He feels there is a high chance that she could have cystic fibrosis. The stat he shared is 50/50. The scariest part of all this and the most hopeful part about it is that CF is a genetic disease that is in your DNA. Therefore, if Izzy has it, so does Sophie since they are identical twins with identical DNA. The good news is he thinks Sophie would be showing some signs of being sick, specifically having some bowel issues, and she’s not. She seems to be as healthy as can be, on full feeds, and having no problems with digestion whatsoever. It’s so scary to think that our healthy one we have worried about the least could be very sick too, but I’m staying with the positive outlook. Let’s keep thinking Sophie’s showing us signs that really they are both healthy without CF. Of course, if they have it we will love them and get them on track for early intervention from the beginning, but we can still have hope of avoiding this issue like we did the NEC.
I asked the doctor if he knew we had TTTS and had fetal surgery, of which he was not aware. Then I shared that an ultrasound post-surgery showed blood in Isabelle’s bowel. At that time the doctors and we were so excited to see all babies having heart beats, he told us not to worry about it. I asked the surgeon if he thought this could be a side effect from that surgery and not related to CF and he said that was a possibility. He’s still sticking to our 50/50 odds though, so we’ll just have to wait and see.
Here’s the plan of action for the next few weeks:
- The surgeon and neonatologist will be monitoring her closely to make sure she’s recovering ok from the surgery and to decide when to start taking the next steps forward – starting gavage feedings and taking out the breathing tube.
- They will test her DNA for a variety of types of CF. I was tested pre-pregnancy and I am not a carrier so she won’t have the most common type of CF. The surgeon explained to us that there are a variety of strands that I may not have been tested for that they’ll look at now. If all of these tests come back negative, there is still a small chance (about 10%) that she would have a rare form of CF that they cannot test for. The tests will be back in a few weeks, so this is the focus of our new prayers for our girls, sweet Sophie and Isabelle.
Either way, we’ll have a better prognosis in a few weeks. Of course, we’ll keep you posted as we hear new information from the wonderful doctors at Edward. Here’s a picture we took of Isabelle right after surgery.
Thanks everyone for your thoughts and prayers. I’m still amazed at how FB has become such a large part of our lives as we battle onward. Each time I see the names in my email of people who are commenting it makes me smile. You do so much more for us than you know. It’s so nice to know there are so many people on this journey with us. We appreciate that more than we can say. It is so nice to be able to glance at our phones and so frequently have more positive, kind, inspiring thoughts from friends and family. Thank you so much!
Also this week we need to thank Aunt Mary and Charlie. They cooked all kinds of food and brought it over to us, the first home cooked meals we’ve had at home since our NICU rollercoaster started. They also spent all day waiting for the surgery and hung out at the hospital with us while we waited. It was nice to have someone with whom to talk and hang out. Thank you!
Also this week, Jeremy’s friends sent us wonderful gifts. I know I need to send all of you thank you cards, but until I get your addresses thank you so much for the amazing gifts all of you sent. You went way beyond. Thank you so much for your thoughtfulness.
Kelly, thank you so much for the beautiful birthstone necklace and cooking us dinner at your house. You’re a much better cook than I am and Steve’s a much better griller than Jeremy is. It was wonderful to have a home cooked meal with you and your family. Thank you!
Subscribe to:
Posts (Atom)