This is Ava cuddling with Grandma just after leaving the hospital last Tuesday.
Us
Wife, Parent, Nurse; my life raw and real, as I see it.
Tuesday, March 10, 2009
Thursday, March 05, 2009
Project Eat
Several months after Taylor came home from the NICU, I was disappointed by his regression in eating. I logged on to the March of Dimes Share my Story website. There, I found the story of triplets Lorne, Issac, and Sullivan. This story drew my attention because like Taylor, Lorne was being fed via G-tube. At the time, I was desperately looking for some support and connection with someone who had walked in our shoes. The McTriplet blog gave me so much hope since that day. These three little boys continue to inspire me and give us so much hope.
When Taylor started eating last year, we felt like we were traveling an untraveled road. We continued down the dark path blindly hoping that we were not being led astray. In September Jon and I decided to cut out the tube feedings, sort of cold turkey, but Taylor did great. I feel so much relief knowing that he has done so well. At the same time, my new friend, the McTriplet mom, was feeling the frustration of not having made much progress with Lorne's eating. I started working on a project to try help give them back some of the hope they gave me. My idea was to tape a video of Taylor with his tube and feeding pump, and a video of him eating, and then one of him when he got his tube out... So, a few weeks ago we finally took Taylor's G-tube out for good... but my project is a flop... why? Well I took the video of him with the tube just before we took it out.. it was super cute. Livi and Taylor both said hello to all three of the boys, and Livi pointed to Taylor's tube for me and they sang them the ABCs... but, Jon had changed the settings on the camera and without realizing it I took a time lapse video with no dialog. And I didn't know this until about two weeks after the tube came out... so, I can't do it over :( Both a good thing and a sad thing...
So for Lorne, my time lapse specials:
Taylor's button:
Taylor without his button:
But the best part of this little failed project is that Lorne has started making some really huge gains all on his own! He is four now, and will likely go to kindergarten with out a feeding tube, his mom and dad's feeding goal. Way to go!!! Just more evidence to suggest that these little miracles really do progress when they are ready...
Hopefully all this computer code stuff is working, this is by far my most complex post ever... yeah me...
When Taylor started eating last year, we felt like we were traveling an untraveled road. We continued down the dark path blindly hoping that we were not being led astray. In September Jon and I decided to cut out the tube feedings, sort of cold turkey, but Taylor did great. I feel so much relief knowing that he has done so well. At the same time, my new friend, the McTriplet mom, was feeling the frustration of not having made much progress with Lorne's eating. I started working on a project to try help give them back some of the hope they gave me. My idea was to tape a video of Taylor with his tube and feeding pump, and a video of him eating, and then one of him when he got his tube out... So, a few weeks ago we finally took Taylor's G-tube out for good... but my project is a flop... why? Well I took the video of him with the tube just before we took it out.. it was super cute. Livi and Taylor both said hello to all three of the boys, and Livi pointed to Taylor's tube for me and they sang them the ABCs... but, Jon had changed the settings on the camera and without realizing it I took a time lapse video with no dialog. And I didn't know this until about two weeks after the tube came out... so, I can't do it over :( Both a good thing and a sad thing...
So for Lorne, my time lapse specials:
Taylor's button:
Taylor without his button:
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| From 2009, Best of |
But the best part of this little failed project is that Lorne has started making some really huge gains all on his own! He is four now, and will likely go to kindergarten with out a feeding tube, his mom and dad's feeding goal. Way to go!!! Just more evidence to suggest that these little miracles really do progress when they are ready...
Hopefully all this computer code stuff is working, this is by far my most complex post ever... yeah me...
Monday, March 02, 2009
Wednesday, February 25, 2009
Patience
I am not a very patient person... there I said it... Its driving me crazy that in the last two weeks there is very little for me to say about Ava and Wes' progress. I have a lot of trouble using that word too... In terms of progress, they've gained weight... in fact, Ava should break 6 pounds today. They've moved into cribs, for now... but the doctor warned me that they could decide to put them back in isolettes whenever they feel like it, so "I shouldn't be surprised if that happens". Have I ever mentioned how much I hate that statement? "Don't be surprised if_____". Like this little sentence takes all the sting out of regression. Anyway, the hospital is under construction... right outside the window next to Ava and Wes. She suggested that they might not be able to handle the noise... I think they have been doing fine, but a rock hit the window the other night and actually cracked it. The nurse mentioned that it will have to be replaced, so I wonder if that will mean another move for us.
Oh, back to progress... um, Wes started being offered bottle and is taking it up to every other feed with "cues". So that is about it. Ava can have a bottle with every feed, but as far as I can tell, she isn't being offered one with every feed. This being said, I must admit that both Ava and Wes usually start out a little sleepy. They both tend to wake up more after he first five minutes or so. I have noticed that the nurses tend not to offer a bottle unless they are super awake... so usually after they do their big assessments (once per shift). They wake up for that because it usually involves them undressing them almost totally and messing around (tickling them) with stethoscopes, thermometers, blood pressure cuffs, etc... During the rest of their feeds they usually change a diaper, which they've learned to sleep right through. Anyway, its made me pretty frustrated to see that Ava has made little tangible progress in the three weeks since she's started nippling. There have been two days where she took some of all bottles during the day, even all of a couple... I think it is interesting how those days happened to be days were the unit was not as busy and well staffed, but I am not suggesting anything...
Anyway, the unit has been busy with fairly high acuity babies... so getting our babies to eat is probably a low priority, but that doesn't make us, as parents, feel very good at all. I want my babies home... NOW... no yesterday... well weeks ago really, but you get my point. So patience... ugh
Oh, back to progress... um, Wes started being offered bottle and is taking it up to every other feed with "cues". So that is about it. Ava can have a bottle with every feed, but as far as I can tell, she isn't being offered one with every feed. This being said, I must admit that both Ava and Wes usually start out a little sleepy. They both tend to wake up more after he first five minutes or so. I have noticed that the nurses tend not to offer a bottle unless they are super awake... so usually after they do their big assessments (once per shift). They wake up for that because it usually involves them undressing them almost totally and messing around (tickling them) with stethoscopes, thermometers, blood pressure cuffs, etc... During the rest of their feeds they usually change a diaper, which they've learned to sleep right through. Anyway, its made me pretty frustrated to see that Ava has made little tangible progress in the three weeks since she's started nippling. There have been two days where she took some of all bottles during the day, even all of a couple... I think it is interesting how those days happened to be days were the unit was not as busy and well staffed, but I am not suggesting anything...
Anyway, the unit has been busy with fairly high acuity babies... so getting our babies to eat is probably a low priority, but that doesn't make us, as parents, feel very good at all. I want my babies home... NOW... no yesterday... well weeks ago really, but you get my point. So patience... ugh
Sunday, February 22, 2009
New Digs and New Cribs
Out of the isolets and into the crib. We also moved to the opposite corner of the NICU last week. The kids now resided where Taylor spent 2 1/2 months in 2006. It is so nice to see them sleeping without a piece of plastic between you and them.
Ava
Westli
Saturday, February 21, 2009
We went sledding in the drive way...
Mom had them all bundled up of course.
After taking the photos we shoveled the drive way while the kids played. Looking up and down the street I saw a good amount of the neighbors out with their snow blowers. I always find it humorous, the two of us with our shovels, everyone else with their snow blowers. I personally prefer a good shovel, no need to worry about another $1000+ piece of equipment that get put to good use probably 3 times a year. Unless you have a massive drive way or there is over 6 inches of snow in a 24 hour period I really do not get the point.
Foxy
I meant to post this closer to when it took place. A fox decided to take a bath and a two hour nap in our back yard on the 11th. It is times like this were you are happy you have at least a 200mm lens, but really want a 600mm.
Wednesday, February 18, 2009
Flower
Thought I would post something a little different. This is a flower that Julie's mother brought her the day that Westli and Ava were born.
Quick "Update"
Ava is 5lbs6oz. Wes is 4lbs12oz.
Both are working on taking a bottle.
This is why there haven't been updates... nothing really to say...
Both are working on taking a bottle.
This is why there haven't been updates... nothing really to say...
Monday, February 16, 2009
BandingTogether
Three years ago Jon and I were up to our ears in prematurity. Our twins born 14 weeks early were micro preemies and suffered and survived nearly all the major complications of prematurity. I became very actively involved with our local chapter of the March of Dimes.
When we decided to have another baby, we knew that we would be high risk for having preemies again, however, we never expected to be reliving the experience again. This year I wasn't able to recruit a team nor raise money for their biggest fund raising event, March for Babies, for obvious reasons. I hope that all of you will consider donating a few dollars, whatever can be spared, for such a good cause. This year we will sponsor March for Babies by offering team photographs again. We have also created new bands for Ava and Wes and in doing so, donated the first $20 in their honor. Please consider donating your dollars in honor of one of our preemies and help us "Band Together" to give every baby a healthy start.
Ava's Band
Westli's Band
Alivya's Band
Taylor's Band
These links are always posted on the side of our blog as well. Thank you for all your support. If you cannot donate, please share our story with someone you know.
As of yesterday, Ava was 5lbs, and Wes was 4lbs8oz.
When we decided to have another baby, we knew that we would be high risk for having preemies again, however, we never expected to be reliving the experience again. This year I wasn't able to recruit a team nor raise money for their biggest fund raising event, March for Babies, for obvious reasons. I hope that all of you will consider donating a few dollars, whatever can be spared, for such a good cause. This year we will sponsor March for Babies by offering team photographs again. We have also created new bands for Ava and Wes and in doing so, donated the first $20 in their honor. Please consider donating your dollars in honor of one of our preemies and help us "Band Together" to give every baby a healthy start.
Ava's Band
Westli's Band
Alivya's Band
Taylor's Band
These links are always posted on the side of our blog as well. Thank you for all your support. If you cannot donate, please share our story with someone you know.
As of yesterday, Ava was 5lbs, and Wes was 4lbs8oz.
Sunday, February 15, 2009
By Popular Deman
Taylor does not pose like his sister. She knows she is cute, and how to turn it on.
And because no post is complete these days without them.
Westli
Ava
Thursday, February 12, 2009
Saturday, February 07, 2009
Friday, February 06, 2009
Nipple anyone?
Tonight we went to the NICU, for obvious reasons, but expecting very little from the visit... and it turned out to be quite different. When we arrived the nurse had been preparing to feed Wes, this we expected because we asked that his feeding schedule be adjusted to accommodate our schedule a little better. We didn't, however, anticipate that it would be a bath day. So when the nurse asked if we would like to bath each of them, we were all for it.
Wes has been wearing a splint on his left foot to help correct a physical defect that occurred while he was in utero. At birth his left foot was abducted (pointed outward away from the center of his body). It is believed to have been a result of his positioning within the womb. The last bath we gave him, the nurse was not comfortable taking the splint off, so we only got to do a sponge bath. Tonight the nurse took the splint off, we were able to submerge his body in the water. It was so nice, Westli liked it too. Jon took many pictures, I am sure he will get some up soon. When Wes was all stuffed and sleeping all cozy, it was Ava's turn. She kept rolling herself up in tiny balls and slipping down on me. I appreciate the little screens that they gave the kids at West Allis a whole lot more now, but I can't remember what I did with them... so I guess we'll be holding them up. Tires out the arm... Jon took many pics of her too.
After all that we got to try Ava on the bottle for the first time. She did fantastic. She paced herself fairly well, didn't have any scary bradys or apneas, and TOOK THE WHOLE BOTTLE... 40mls! She made me so proud... good girl!
Wes has been wearing a splint on his left foot to help correct a physical defect that occurred while he was in utero. At birth his left foot was abducted (pointed outward away from the center of his body). It is believed to have been a result of his positioning within the womb. The last bath we gave him, the nurse was not comfortable taking the splint off, so we only got to do a sponge bath. Tonight the nurse took the splint off, we were able to submerge his body in the water. It was so nice, Westli liked it too. Jon took many pictures, I am sure he will get some up soon. When Wes was all stuffed and sleeping all cozy, it was Ava's turn. She kept rolling herself up in tiny balls and slipping down on me. I appreciate the little screens that they gave the kids at West Allis a whole lot more now, but I can't remember what I did with them... so I guess we'll be holding them up. Tires out the arm... Jon took many pics of her too.
After all that we got to try Ava on the bottle for the first time. She did fantastic. She paced herself fairly well, didn't have any scary bradys or apneas, and TOOK THE WHOLE BOTTLE... 40mls! She made me so proud... good girl!
Thursday, February 05, 2009
Puddles of Pee
There hasn't been much to update recently regarding Ava and Wes. They continue to do well off CPAP, and I think it is safe to say that the CPAP is gone for good. Wes continues to have multiple bradys per day, but continues to recover on his own. They had their eye exam a couple days ago, everything looks good. The doctor will come back in two weeks to check again, assuming all looks good, they will be done with that for a year. Ava has been suckling on her nook really well, so we started her at the breast on Saturday. Its been slow, but she has been tolerating everything well. Wes' bradys have caused us to move slower with him. We have been using breast milk during some of his oral cares and while sucking on the nuk to develop a taste. He didn't show much interest in the Nuk over the weekend, but was sucking vigorously during a couple feeds yesterday. Otherwise, they have been adjusting their food levels according to their weight gain and doing little else.
A couple days ago Livi woke up with a pretty runny nose, which of course, has developed into a nasty cough. Yesterday Taylor woke up with it too. Livi was so off balance on Tuesday that she tripped over some toys and fell into her art table. Within seconds the area between her eyes turned purple and I watched it swell to about the size of an egg... I have never watched anything swell like that. Once I got her calmed down she managed the injury pretty well. She still looks like a little pink dinosaur, but I can tell that it is getting better.
But that wasn't the worst part of that day, the worst part occured well before that happened. I walked into their quiet room at 8:45am, odd for kids that are usually up by 7:30am... to find that they had for the first time in months, taken off all their clothes and diapers... sigh. I really thought they were over this. Alas, I found all of Taylor's sheets and mattress pad off his bed. Taylor was lying there on his plastic mattress cover, completely naked with his blanket over him, in a big huge puddle of pee. So nasty. It was soaked into the pillow he was laying on all the way down to his feet. It looked to me like Livi had been laying on the other side of her bed, where she peed, then moved so as not to lay in it like Taylor.
I was more calm about this than I had been in the past. Mostly I felt bad about now catching it, who knows how long they had been like that. Why don't my motherly instincts tell me to wake up and make sure they haven't done this? Anyway, I got some paper towel and started to soak up the mess, then I put the kids in a warm tub and scrubbed them down. I let them play in the tub for a bit while I pulled everything out of their room and put it in the laundry. YUCK! Last I wiped down the plastic mattresses with some Clorox wipes. I finally got the kids some breakfast around 10:30. This should have been a sign that the day would be full of tiny disasters.
I have been so busy trying to keep up with the dishes, laundry, baths and all the other things that are harder for Jon to do right now, that the days sort of fly by. Still, I miss the babies a lot, I wish I could be with them more, and this makes the days take forever. I don't actually know how I have time to thing about that now, between fever reducing meds, wiping noses, and the a fore mentioned housework... Oh, and the kids demanding ice water, as they are right now... guess that is a clue that I have taken too much time to write this note...
A couple days ago Livi woke up with a pretty runny nose, which of course, has developed into a nasty cough. Yesterday Taylor woke up with it too. Livi was so off balance on Tuesday that she tripped over some toys and fell into her art table. Within seconds the area between her eyes turned purple and I watched it swell to about the size of an egg... I have never watched anything swell like that. Once I got her calmed down she managed the injury pretty well. She still looks like a little pink dinosaur, but I can tell that it is getting better.
But that wasn't the worst part of that day, the worst part occured well before that happened. I walked into their quiet room at 8:45am, odd for kids that are usually up by 7:30am... to find that they had for the first time in months, taken off all their clothes and diapers... sigh. I really thought they were over this. Alas, I found all of Taylor's sheets and mattress pad off his bed. Taylor was lying there on his plastic mattress cover, completely naked with his blanket over him, in a big huge puddle of pee. So nasty. It was soaked into the pillow he was laying on all the way down to his feet. It looked to me like Livi had been laying on the other side of her bed, where she peed, then moved so as not to lay in it like Taylor.
I was more calm about this than I had been in the past. Mostly I felt bad about now catching it, who knows how long they had been like that. Why don't my motherly instincts tell me to wake up and make sure they haven't done this? Anyway, I got some paper towel and started to soak up the mess, then I put the kids in a warm tub and scrubbed them down. I let them play in the tub for a bit while I pulled everything out of their room and put it in the laundry. YUCK! Last I wiped down the plastic mattresses with some Clorox wipes. I finally got the kids some breakfast around 10:30. This should have been a sign that the day would be full of tiny disasters.
I have been so busy trying to keep up with the dishes, laundry, baths and all the other things that are harder for Jon to do right now, that the days sort of fly by. Still, I miss the babies a lot, I wish I could be with them more, and this makes the days take forever. I don't actually know how I have time to thing about that now, between fever reducing meds, wiping noses, and the a fore mentioned housework... Oh, and the kids demanding ice water, as they are right now... guess that is a clue that I have taken too much time to write this note...
Monday, February 02, 2009
Sunday, February 01, 2009
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