We met with the developmental pediatrician's nurse again today. The one we normally see wasn't in, so this nurse was filling in. JAM had lost half a pound since his last weigh-in. He still hasn't gained since November.
She sat and looked at us for a long time, thought out loud, and was in essence fantastic. We re-explored together all sorts of options. Pancreatic insufficiency. Celiacs. Nephrological issues. During the visit Jonathan lustily ate 8 oz of high calorie toddler formula, proving to her that he really WAS taking in food and really DID have hunger cues (something that isn't a given for micropreemies).
She is as baffled as our previous nurse. She pulled in the developmental doctor. They discussed JAM's case. She discussed what GI was doing with him. We rejoiced that he continues to grow vertically and his head is on the curve, but we mourned at how his BMI has utterly tanked since last fall. At this rate he'll be at olympic athlete status for BMI by next fall -- only without the muscles. Not right for a toddler.
We discussed absorption issues -- our best guess at this point. He's borderline in some areas. She confirmed that he didn't lose enough of his gut during his bout of NEC to qualify for short gut issues. She also confirmed that he was adorable. We knew that one. We left with a new formula and no real answers. She is on the case, though, and really wants to get to the bottom of this. We're grateful. We want this mystery solved, too.
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In other news, changes are in the air. The weather is warmer, I begin training for NICU volunteering tomorrow, and we move within the week. So much is happening. I cannot wait until we are settled and I can start writing in a more disciplined fashion again.
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In other-other news, even if I haven't managed writing, I have kept reading, and now that I've gotten feedly to work on my phone, much of that reading has been other blogs.. I guess I've used commenting on other people's blogs as a stand-in for writing on my own during this busy season, especially when the post hits home, like this one. Jack's mom liked my comment on this blog post so much that she turned it into a stand-alone blog post. Thank you. (Life with Jack is one of my favorite micro-preemie blogs. If you haven't checked it out, do. He's a few years older than JAM which has always helped me see the path forward.)
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Speaking of following people, if you're not following me on facebook yet, "like" my author's page, here. (www.facebook.com/momofa23weeker)
Wednesday, April 23, 2014
Wednesday, April 9, 2014
Welcome April? - A peek at life now.
I cannot believe March is over. In many ways this year it was nasty and gross, the sort of month you are ready to shake off. The showers of spring have finally hit and are washing away the ugly grime.
We are moving. We think we've sold our house. We were sick with bronchitis and pneumonia basically all month. This was scarier for JAM than for the rest of us. We were close to hospitalization and oxygen, but we dodged it, gratefully. His albuterol inhaler was well-used this past month. And then, as if the weather were commiserating with us, winter seemed to refuse to end.
April has made a huge difference. We are all a bit more optimistic. Days have been spent out of doors, and while we still have sniffles and are still in transition, the world just looks brighter.
In March we visited the GI doctor. She gave us some magic juice that was specially designed to realign the delicate flora of his GI. She called the juice an antibiotic. She also asked us to give him probiotic. We did so faithfully. Some of the pain went away. The overall problems abated for about a week and then returned. Less pain, but same symptoms.
So this week I contacted his GI doctor and his nutritionist again. Since hitting the screw with a hammer didn't seem to nail anything in last time, we're going to try again, only hit harder. More antibiotic - but for a full month instead of a few weeks. His gut will heal, gosh darn it. We will make it so.
The nutritionist offered a variety of really yummy looking high-calorie smoothies. I told her I'd be sure to try the recipes "to make sure they tasted okay" before handing them over to him. She has been in conversation with an NP and a developmental pediatrician, all of whom are stumped about my little guy. Keep up with the zinc supplements. Keep up with the high calorie foods. And maybe, maybe he might someday grow.
He's been hanging out at 15-16 pounds since October. He's still comfortable in his 9 month clothing. (Yep, he's 20 months old. Yes, that means kids a full year younger than him are in the same size clothing as him.)
Just because he's little, though, doesn't mean he doesn't LOOK his age. Over the past month he's decided that he's a toddler now.
He's crawling and climbing and giggling and exploring. He talks, though we don't often understand him, and he has a will that is showing more and more each day with insistent whines that we don't always know how to interpret. He loves to hold our hands and walk around the living room. We did this in a waiting room one day, and someone commented that he looked too little to be walking around like that. He's actually behind in gross-motor by about six months. Had he been a "normal" size for his age, they'd be wondering why he wasn't walking on his own yet. I guess there are benefits to being little. You look brilliant for your size. Brilliance. That's what April will be about. Sunshine.
Welcome, spring.
We are moving. We think we've sold our house. We were sick with bronchitis and pneumonia basically all month. This was scarier for JAM than for the rest of us. We were close to hospitalization and oxygen, but we dodged it, gratefully. His albuterol inhaler was well-used this past month. And then, as if the weather were commiserating with us, winter seemed to refuse to end.
April has made a huge difference. We are all a bit more optimistic. Days have been spent out of doors, and while we still have sniffles and are still in transition, the world just looks brighter.
In March we visited the GI doctor. She gave us some magic juice that was specially designed to realign the delicate flora of his GI. She called the juice an antibiotic. She also asked us to give him probiotic. We did so faithfully. Some of the pain went away. The overall problems abated for about a week and then returned. Less pain, but same symptoms.
So this week I contacted his GI doctor and his nutritionist again. Since hitting the screw with a hammer didn't seem to nail anything in last time, we're going to try again, only hit harder. More antibiotic - but for a full month instead of a few weeks. His gut will heal, gosh darn it. We will make it so.
The nutritionist offered a variety of really yummy looking high-calorie smoothies. I told her I'd be sure to try the recipes "to make sure they tasted okay" before handing them over to him. She has been in conversation with an NP and a developmental pediatrician, all of whom are stumped about my little guy. Keep up with the zinc supplements. Keep up with the high calorie foods. And maybe, maybe he might someday grow.
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| Warm weather finally allowed us to get out. Here's JAM with his sister at a sculpture garden, shoeing a gigantic horse with great effort. See, I told ya he was still so small. |
Just because he's little, though, doesn't mean he doesn't LOOK his age. Over the past month he's decided that he's a toddler now.
He's crawling and climbing and giggling and exploring. He talks, though we don't often understand him, and he has a will that is showing more and more each day with insistent whines that we don't always know how to interpret. He loves to hold our hands and walk around the living room. We did this in a waiting room one day, and someone commented that he looked too little to be walking around like that. He's actually behind in gross-motor by about six months. Had he been a "normal" size for his age, they'd be wondering why he wasn't walking on his own yet. I guess there are benefits to being little. You look brilliant for your size. Brilliance. That's what April will be about. Sunshine.
Welcome, spring.
Sunday, March 23, 2014
Paradox.
Imperfect. That’s what we are. That’s how we were born.
But then also in the image of God.
But then also in the image of God.
Redeemed, but still sinning. Already, but not yet.
This is the tension we live with, the seeming contradiction of our souls, our bodies, our beings.
And it applies even to the smallest baby.
I know, because I had the smallest baby. Okay, not THE smallest, but certainly the smallest my doctor had delivered.
I watched him struggle with his imperfections. His lungs could not breath, his kidneys failed twice, his heart failed to recognize that it was out of the womb and change the way the blood flowed. He needed heart surgery. Then he needed surgery again as his gut perforated. It had begun to die off, unable to digest food. A month later his retinas were on the verge of detachment. This was not a perfect being, it was a being slowly unraveling, held to this earth only by a thin thread and the wires and tubes of medical machinery.
But yet he was strikingly perfect, even at just over one pound. His hands, his sliver-sized translucent knuckles. When he was born he had perfect little fingers with fingernails. FINGERNAILS! How is that possible on so tiny a being?
Imperfect, but in the image of God.
A paradox. Like the world we live in. I don't understand.
How do I explain sin? I cannot. I wish it didn’t exist. How do I explain why my baby lived when others died? I cannot. I wish children did not die.
But I read this – the death? It’s not how God intended. Just as we were not created to give in to our selfish desires, or be victims of others’ sin, we were also not created to die tragic early deaths. We’re in the already – Christ has come and we are saved – and we are in the not-yet, living in a fallen and broken world where sin and death still plague us.
Never again.
I cannot tell you how much comfort verse 20 gives me. God knows that infants die, and he also thinks it isn't right.It isn't fair.
My son lives. This is by the amazing work of a team of medical professionals. This is also by God’s grace, giving life to kidneys that had failed when the nephrologist told us nothing more could be done, giving wisdom to doctors on when to perform PDA surgery, giving skilled steady hands to JAM’s surgeon for the many surgeries performed. Miraculous. The "already."
But there is still death. And sorrow.
We are there, with a good God who works miracles in small beings. We have a savior who has conquered death by death.
This is the tension we live with, the seeming contradiction of our souls, our bodies, our beings.
And it applies even to the smallest baby.
I know, because I had the smallest baby. Okay, not THE smallest, but certainly the smallest my doctor had delivered.
But yet he was strikingly perfect, even at just over one pound. His hands, his sliver-sized translucent knuckles. When he was born he had perfect little fingers with fingernails. FINGERNAILS! How is that possible on so tiny a being?
Imperfect, but in the image of God.
A paradox. Like the world we live in. I don't understand.
How do I explain sin? I cannot. I wish it didn’t exist. How do I explain why my baby lived when others died? I cannot. I wish children did not die.
But I read this – the death? It’s not how God intended. Just as we were not created to give in to our selfish desires, or be victims of others’ sin, we were also not created to die tragic early deaths. We’re in the already – Christ has come and we are saved – and we are in the not-yet, living in a fallen and broken world where sin and death still plague us.
“See, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind. But be glad and rejoice forever in what I will create, for I will create Jerusalem to be a delight and its people a joy. I will rejoice over Jerusalem and take delight in my people; the sound of weeping and of crying will be heard in it no more. Never again will there be in it an infant who lives but a few days.” - Isaiah 65:17-20
Never again.
I cannot tell you how much comfort verse 20 gives me. God knows that infants die, and he also thinks it isn't right.It isn't fair.
My son lives. This is by the amazing work of a team of medical professionals. This is also by God’s grace, giving life to kidneys that had failed when the nephrologist told us nothing more could be done, giving wisdom to doctors on when to perform PDA surgery, giving skilled steady hands to JAM’s surgeon for the many surgeries performed. Miraculous. The "already."
But there is still death. And sorrow.
We are there, with a good God who works miracles in small beings. We have a savior who has conquered death by death.
And we are not there, sin still reigns. It still impacts us and rocks us to the core. But somehow grace is still poured down, even in the midst of the scorching heat of sin and death, there are drops of rain, and dew collects on grasses.
I do not understand. It is a contradiction, a paradox I cannot unravel.
Already, but not yet.
This is what a one (and a quarter) pound baby taught me.
I do not understand. It is a contradiction, a paradox I cannot unravel.
Already, but not yet.
This is what a one (and a quarter) pound baby taught me.
Thursday, March 20, 2014
What is a miracle?
We are still in the throws of preparing to move. It's just enough of a messy process that we hope this is it - both that our home has finally sold (we have an offer on the table) AND that we don't ever.have.to.do.this.again. [Punctuation placed liberally to tell you just.how.done.with.this.I.feel.]
Jonathan is doing very well. He is a trickster and today's trick was standing, by himself, for one whole second. He was so proud. Maybe he'll be walking by himself before this last season of quarantine is over. Maybe we'll surprise everyone when we reemerge from our winter hibernation.
In the mean time, take a look at my post on the Hand to Hold blog, where I discuss coming to term with the term "miracle" that is used liberally by doctors and friends alike to describe my son. You might be surprised, but I don't like the term. Read here to find out why.
Jonathan is doing very well. He is a trickster and today's trick was standing, by himself, for one whole second. He was so proud. Maybe he'll be walking by himself before this last season of quarantine is over. Maybe we'll surprise everyone when we reemerge from our winter hibernation.
In the mean time, take a look at my post on the Hand to Hold blog, where I discuss coming to term with the term "miracle" that is used liberally by doctors and friends alike to describe my son. You might be surprised, but I don't like the term. Read here to find out why.
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| It doesn't take a preemie to be given "a miracle." You're just more aware of what a miracle life is when you've got a preemie. |
Sunday, March 2, 2014
GI doc
Tomorrow we add a GI specialist to JAM's team. It's about time. We hope to find out why he has vitamin deficiencies, isn't growing well, and has severe bowel pain almost daily. More to come, I'm sure.
In the mean time, JAM is enjoying our house. In addition to adding a GI specialist, tomorrow is also the day our house goes on the market. Since the floors are swept and polished to perfection, we've taken down anything to bar his way and are allowing him to explore almost the whole house. He's enjoyed it immensely and is so proud of his crawling ability. He's getting really good at getting everywhere. He even managed to wedge himself under our bed, a feat that was just traumatic enough for him that it is something I hope he won't repeat.
We've even practiced going up and down stairs. He doesn't quite have the strength to do it alone yet, but he's getting the hang of it and is so proud of himself.
His lungs suffered for a few days from either a cold or our cleaning spree (likely both) but he's back on track now.
In the mean time, JAM is enjoying our house. In addition to adding a GI specialist, tomorrow is also the day our house goes on the market. Since the floors are swept and polished to perfection, we've taken down anything to bar his way and are allowing him to explore almost the whole house. He's enjoyed it immensely and is so proud of his crawling ability. He's getting really good at getting everywhere. He even managed to wedge himself under our bed, a feat that was just traumatic enough for him that it is something I hope he won't repeat.
We've even practiced going up and down stairs. He doesn't quite have the strength to do it alone yet, but he's getting the hang of it and is so proud of himself.
His lungs suffered for a few days from either a cold or our cleaning spree (likely both) but he's back on track now.
Wednesday, February 26, 2014
Life catching up with us
Apologies. There will be no post giving a great idea of what to do in a season of RSV today.
In an attempt to get JAM the best care he needs (and protect him from germs these first few years), my husband has accepted a new job that allows me to stay at home for the time being. I am currently working half-time.
Steve's job doesn't start for a few months, but the housing market is really very good right now, so we've been encouraged to get our house on the market this week. We were told this exactly six days ago. The realtor comes back out to check out the house again tomorrow.
So instead of trying to find things to keep us busy and sane, I find myself insane with the tasks of cleaning, painting, de-cluttering, and fixing. All while trying to keep most of the paint fumes and chemicals out of the air that surrounds my CLD baby.
It sounds awful, but thanks to the help of my parents and the amazing youth group at my church (yes, I broke quarantine again and allowed a dozen high schoolers to tromp through my home with cleaning supplies), we think it is probably possible.
In other news, I'll have a practically empty home by the end of this week, so I can finish my installment of activities for RSV season next Wednesday.
Wish us luck!
In an attempt to get JAM the best care he needs (and protect him from germs these first few years), my husband has accepted a new job that allows me to stay at home for the time being. I am currently working half-time.
Steve's job doesn't start for a few months, but the housing market is really very good right now, so we've been encouraged to get our house on the market this week. We were told this exactly six days ago. The realtor comes back out to check out the house again tomorrow.
So instead of trying to find things to keep us busy and sane, I find myself insane with the tasks of cleaning, painting, de-cluttering, and fixing. All while trying to keep most of the paint fumes and chemicals out of the air that surrounds my CLD baby.
It sounds awful, but thanks to the help of my parents and the amazing youth group at my church (yes, I broke quarantine again and allowed a dozen high schoolers to tromp through my home with cleaning supplies), we think it is probably possible.
In other news, I'll have a practically empty home by the end of this week, so I can finish my installment of activities for RSV season next Wednesday.
Wish us luck!
Wednesday, February 19, 2014
Surviving Isolation - Activit(ies) of the week #3 - Seven sensory sensations
The post below comes to us by guest blogger, Becca. Follow her daughter's story here: http://woodra01.wordpress.com/
Thank you so much, Becca, for sharing your ideas today!
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My little one, Charlie, was born the day she reached twenty six weeks gestation and weighed 790 grams. She is almost two years old now but continues to struggle with motor delays and sensory issues.
These are a few of her favorite home activities I use to help her with the delays:
1) Pillow Obstacle Course: When Charlie was a creeper and/or crawler, I used couch cushions, decorative cushions, and bed pillows to create an obstacle course for her to crawl over. Now that she is starting to walk, I stack the pillows a little higher (make sure they are steady), create a three pillow tunnel, or have her walk over a pillow (remain close by to catch any tumbles).
2) Rice or Bean Hunt: I use a plastic storage container, but a shoebox or a big pot will work just as well. I fill it with rice, beans, quinoa, millet, or anything that I have on hand. Then, I bury small toys in the container and leave a few visibly sticking out. After a prompt such as “Where’s the duck? I’m going to get it!” Charlie loves to dig through the container to find her toys.
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| Image courtesy of http://woodra01.wordpress.com/ |
3) Textured Fabric Exploration: I gather different types of fabric items such as fleece, knit sweaters, towels, flannel, nylon, etc and place the fabrics in a clothes basket. Charlie and I explore the fabrics. I ask questions like “Is it scratchy? Is this one soft?” We also use the fabrics to play games such as peek a boo or to hide toys.
4) Pasta Sorting: Charlie and I make a game of putting the long pieces of uncooked spaghetti in to empty water bottles or soda bottles. Containers with wider mouths like a the cardboard center of paper towel roll or a jar can work for kids that need it.
5) Homemade Instruments: I make this one up each time we do it. Sometimes, I fill a container with a lid (tape it closed) with beans, rice, or anything that will make a rattle noise. For a quick option, I grab a pot or pan and a wooden spoon to make an instant percussion instrument. Charlie plays the instrument along with her favorite musical video.
6) Window Markers: Charlie likes to use washable markers, white board markers, or markers made specifically for windows on our sliding glass door. Sometimes, I draw and encourage her to imitate my drawing motion.
7) Stuffed Animal Safari: Charlie has a large number of stuffed animals. I place them in different locations around the house. Together we go on a safari! I say something like, “Let’s go find the bear! What does the bear say?” and we look around to find the selected animal. In the process, she climbs up stairs, practices her walking, and we work on her speech. After she finds the chosen animal, we place it in a collective area. When we finish, we recap the animals she has found and go over sounds.
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