- Our beautiful baby girl Eliza - every day with her is a treasure.
- My wonderful wife Heather, without whom I would have crashed and burned long ago.
- Eliza finally starting to grow again. Grow baby grow!
- The time we had with our babies Oliver and Charlotte (though I would rather have been thankful for them being here with us still...)
- All of our family, friends, co-workers, and neighbors who have stepped forward to help us through tough times with prayers, supportive words, and prepared meals.
- Our dog Pasha, antisocial and neurotic though she can be.
- Having a good job that lets me provide for our family, isn't too stressful, and gives me the flexibility to be at the hospital when I need to be.
- Health insurance. I don't know how anyone can put babies through the ICN without it.
- Home-made Thanksgiving dinner shared with family.
- The beginning of Christmas season...!
Friday, November 26, 2010
Thankfulness
Some of the things I'm most thankful for:
Monday, November 22, 2010
One Step Forward
Eliza is now 2 pounds!! It looks like for now they have finally worked out the magic concoction to get the baby to grow. Four days ago they started her on IV nutrition in addition to the milk and some other additives.. and she's gained over 100 grams since!
The tightness in my chest has relaxed some and it feels so good to be able to breathe easy for a moment.
My sister came to visit this weekend and brought her handy video camera. I think we will have to get one soon. :) Eliza's starting to enjoy touch and seems to be checking out her surroundings. I hope you share in our enjoyment of this moment. She's so magical to me. :)
Wednesday, November 17, 2010
Still trying to grow
I'm starting to feel like a broken record... lack of growth (aka failure to thrive) is still Eliza's #1 problem. After Monday's blood transfusion (only six days since the previous one...) and the associated 12 hours of no food followed by 12 hours of half food, Tuesday night found that Eliza had again lost all of the weight she'd gained recently. Her weight was right back to where it had been two weeks ago - very frustrating!
We had a lengthy discussion during rounds Wednesday morning, and a meeting with the new doctor that afternoon, and came out of it with several plans:
First, increased her feeding amount again - up to 180 mL/kg/day now, which should be enough to provide about one and a half times as many calories as a preemie normally needs to grow. This should really be enough food for her to grow on - so long as she can keep getting it consistently. Which brought us to part two of the plan. Blood transfusions are the main reason she has to go without food, so they started her on injections of erythropoietin, a hormone that stimulates blood cell production. Hopefully that will help her not need transfusions so often. When she does need transfusions, the plan was to put a PICC line back in so that she could switch over to full IV feeds for the day so as to continue getting plenty of calories.
So that was the plan, anyway. And I'm sure you all know by now just how well we and "plans" get along these days... so of course, overnight she started "dumping" - the increased feeds overloaded her digestive system and caused lots of the milk to just pass straight through her more or less undigested - not the effect we wanted! So we went on to "plan B" rather quicker than expected, reducing her feeds by a good bit and adding clear fluids and lipids (delivered by IV for now) to make up the difference.
They tried to put in a PICC line today (because a PICC can stay in a lot longer than an IV, and they can give more concentrated nutrients through it) but were unsuccessful. Apparently her veins are not in the best shape, whether from previous IVs, or something else - I'm not exactly sure. So we still don't have a fallback option for providing all of her nutrients when she next needs another transfusion. They're talking about trying to put in some other kind of central line tomorrow, but that's not definite yet - we'll see.
Waiting now for her 9 PM assessment to find out whether she's gained or lost weight today... here's hoping for some good news for a change!
We had a lengthy discussion during rounds Wednesday morning, and a meeting with the new doctor that afternoon, and came out of it with several plans:
First, increased her feeding amount again - up to 180 mL/kg/day now, which should be enough to provide about one and a half times as many calories as a preemie normally needs to grow. This should really be enough food for her to grow on - so long as she can keep getting it consistently. Which brought us to part two of the plan. Blood transfusions are the main reason she has to go without food, so they started her on injections of erythropoietin, a hormone that stimulates blood cell production. Hopefully that will help her not need transfusions so often. When she does need transfusions, the plan was to put a PICC line back in so that she could switch over to full IV feeds for the day so as to continue getting plenty of calories.
So that was the plan, anyway. And I'm sure you all know by now just how well we and "plans" get along these days... so of course, overnight she started "dumping" - the increased feeds overloaded her digestive system and caused lots of the milk to just pass straight through her more or less undigested - not the effect we wanted! So we went on to "plan B" rather quicker than expected, reducing her feeds by a good bit and adding clear fluids and lipids (delivered by IV for now) to make up the difference.
They tried to put in a PICC line today (because a PICC can stay in a lot longer than an IV, and they can give more concentrated nutrients through it) but were unsuccessful. Apparently her veins are not in the best shape, whether from previous IVs, or something else - I'm not exactly sure. So we still don't have a fallback option for providing all of her nutrients when she next needs another transfusion. They're talking about trying to put in some other kind of central line tomorrow, but that's not definite yet - we'll see.
Waiting now for her 9 PM assessment to find out whether she's gained or lost weight today... here's hoping for some good news for a change!
Thursday, November 11, 2010
A week in the life
Even though we haven't had any major crises with Eliza lately, things have been tough and its been a struggle to find the positives. It's been exhausting and overwhelming so we haven't done a good job of keeping the blog updated. A summary of the issues we have been dealing with..
+ Failure to thrive - you can get a good look at this in the chart Glenn previously posted. Eliza had one good week of growth and then has stagnated the last couple weeks. There are lots of hypotheses and reasons being discussed for this problem including: high metabolism (is she really my daughter??), too much energy being expended (having to work hard to breathe and keep warm due to her size), decreased absorption due to her ileostomy (though hers is very low in her small intestines so in theory this shouldn't be a significant factor), other complicated chemistry factors (ex. her sodium and potassium levels), and just the repeated needed pauses in feeds due to other treatments. (One possibility that was eliminated was low calorie milk -- they ran a test and found my breast milk to be 27 calories/ounce. This is quite high considering "normal" milk to be 20 calories.) Her weight gain issues seem to be a combination of all of the above and there are lots of things being tried and discussed to attempt to help but its such a complicated situation that no one really knows exactly what's needed to help her..........This problem is her single most significant issue since it is the linchpin for everything else getting better.
+ Osteopenia of prematurity - girl's got weak bones. This condition is another lesson in chemistry that I don't think I will go into great details at the moment. Basically it's related to her growth and mineral absorption...and so she's at a high risk for bone fractures.
+ Blood transfusions - at the beginning of her life she had several transfusions (which were expected) but now that she is older she should be starting to make her own blood cells. For the last 3 weeks she has needed a transfusion every week. Each time she receives one her body misses another chance to make its own cells and it puts excess iron into her system. Her feeds are also stopped for 12 hours and decreased for another 12. Without the transfusions though her heart has to work very hard and her kidneys don't function as well. One way to make this better? Growing!
+ Hydrocortisone - Baby's got a serious dependence. This is a steroid that her body should be making on its own but in preemies it has to be supplemented and, like the blood, the more you supplement the less the body makes. Her renal functions are dependent on the hydcortisone levels and as they try to wean, her kidneys stop functioning as well. High levels of the steroid inhibit growth.
So 100 points for you if you can spot the vicious cycle in all of this.
All of the issues make it difficult to grow and yet she needs to grow to get better. Awesome.
+ Failure to thrive - you can get a good look at this in the chart Glenn previously posted. Eliza had one good week of growth and then has stagnated the last couple weeks. There are lots of hypotheses and reasons being discussed for this problem including: high metabolism (is she really my daughter??), too much energy being expended (having to work hard to breathe and keep warm due to her size), decreased absorption due to her ileostomy (though hers is very low in her small intestines so in theory this shouldn't be a significant factor), other complicated chemistry factors (ex. her sodium and potassium levels), and just the repeated needed pauses in feeds due to other treatments. (One possibility that was eliminated was low calorie milk -- they ran a test and found my breast milk to be 27 calories/ounce. This is quite high considering "normal" milk to be 20 calories.) Her weight gain issues seem to be a combination of all of the above and there are lots of things being tried and discussed to attempt to help but its such a complicated situation that no one really knows exactly what's needed to help her..........This problem is her single most significant issue since it is the linchpin for everything else getting better.
+ Osteopenia of prematurity - girl's got weak bones. This condition is another lesson in chemistry that I don't think I will go into great details at the moment. Basically it's related to her growth and mineral absorption...and so she's at a high risk for bone fractures.
+ Blood transfusions - at the beginning of her life she had several transfusions (which were expected) but now that she is older she should be starting to make her own blood cells. For the last 3 weeks she has needed a transfusion every week. Each time she receives one her body misses another chance to make its own cells and it puts excess iron into her system. Her feeds are also stopped for 12 hours and decreased for another 12. Without the transfusions though her heart has to work very hard and her kidneys don't function as well. One way to make this better? Growing!
+ Hydrocortisone - Baby's got a serious dependence. This is a steroid that her body should be making on its own but in preemies it has to be supplemented and, like the blood, the more you supplement the less the body makes. Her renal functions are dependent on the hydcortisone levels and as they try to wean, her kidneys stop functioning as well. High levels of the steroid inhibit growth.
So 100 points for you if you can spot the vicious cycle in all of this.
All of the issues make it difficult to grow and yet she needs to grow to get better. Awesome.
Wednesday, November 10, 2010
Growing pains
We'll try and do a real post soon to cover some of the multitude of events, changes, and medical scares that Eliza has had over the last couple of weeks, but I wanted to go ahead and share this. We had a meeting with Eliza's care team (doctor, nurse practitioners, nurses, social worker, etc.) on Tuesday to discuss her care plan and get a better "big picture" understanding of where we're at and what needs to be done. While we covered a lot of important ground, this chart in particular really struck a chord with me. It shows how Eliza has grown (or not) since birth as compared to the typical development for babies.
One point of confusion for me (which I still haven't gotten a satisfactory answer to, unfortunately) is whether these growth curves are typical for micro-preemies for Eliza, as opposed to infants continuing to develop in the womb. The doctor said it was the same for both, but that just doesn't make sense to me - everything I've heard before says preemies just can't grow as well compared to staying in the womb for longer. I'd really like to see a similar set of charts that are specific to preemies... hopefully it wouldn't look as bad for Eliza?
One point of confusion for me (which I still haven't gotten a satisfactory answer to, unfortunately) is whether these growth curves are typical for micro-preemies for Eliza, as opposed to infants continuing to develop in the womb. The doctor said it was the same for both, but that just doesn't make sense to me - everything I've heard before says preemies just can't grow as well compared to staying in the womb for longer. I'd really like to see a similar set of charts that are specific to preemies... hopefully it wouldn't look as bad for Eliza?
Monday, November 1, 2010
It's been a month today
Since our Charlotte passed away. I've been thinking about her a lot and even called Eliza "Charlotte" to the nurse. That was painful.
It was so hard to go back to the hospital the day after she passed away and yet I think it would have been even harder not to. As difficult as it is being at the hospital day in and out, it's also where we spent all of our time with Charlotte and Oliver - and I get to feel a little closer to the memories of them by being there.
Last week the word "triplet" mysteriously dropped off of Eliza's list of "issues" that are read off every morning during rounds. That bothered me more than I would have guessed. She went from "24 week triplet" to "24 weeker." I mentioned that I wasn't a big fan of the change to one of the nurse practitioners and the omission was corrected. Now every morning when I hear "24 week triplet" it brings a small smile to my face knowing that Charlotte and Oliver won't be forgotten.
It was so hard to go back to the hospital the day after she passed away and yet I think it would have been even harder not to. As difficult as it is being at the hospital day in and out, it's also where we spent all of our time with Charlotte and Oliver - and I get to feel a little closer to the memories of them by being there.
Last week the word "triplet" mysteriously dropped off of Eliza's list of "issues" that are read off every morning during rounds. That bothered me more than I would have guessed. She went from "24 week triplet" to "24 weeker." I mentioned that I wasn't a big fan of the change to one of the nurse practitioners and the omission was corrected. Now every morning when I hear "24 week triplet" it brings a small smile to my face knowing that Charlotte and Oliver won't be forgotten.
Cuteness
A rare look at Eliza's uncovered face - she's giving us her best grumpy old man look.
And this is Eliza trying to figure out how to escape her assessment.
And kangarooing with Mama
Love that face!
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