A year ago my church hosted a blood drive for my son. In many ways, it was better than the traditional church shower. (Let's be honest - as a third child, he wasn't getting a church shower anyway.)
The blood drive was the idea of another preemie mom. Her teenage twins had been in the NICU, and every time I talked to her or her husband about Jonathan's stay, it took them back to early life with their twins. Perhaps I shouldn't have been surprised when she asked if she could host a drive in his honor, but I was. It was so perfect, I wouldn't have thought of it, and it was just the sort of gift I needed as his mom. I cried. For real.
See, despite all the prayers and well-wishes and support (and we had a ton) the truth is, I felt a bit alone after we'd brought him home. It didn't help that now we were in isolation and I didn't see people as much, but it was more than that. While every day of his life was a celebration in our community, it also felt like he'd never been fully celebrated. That doesn't make sense, I know, but there was no huge excited exclamation of "the baby is HERE!" We never had that sort of celebration. He came in to this world slowly, bit by bit, organ by fragile organ, on wings and prayers the whole way. Things had been so touch-and-go that no one knew when or how to celebrate. Gifts in the hospital (the normal spot for such celebration) seemed out of place. And then after that it was too late to make any sense. Once he came home I really wanted to host a party to scream "We've MADE IT! We have an amazing baby boy!" But we couldn't host a party because, well, he was home and fragile and we were in cold and flu season. Someone had put an "It's a BOY!" balloon on our mailbox the day he came home. I'm not sure who it was, but that too touched me. It's a boy. We can celebrate now.
In the end, I can't think of a better way to celebrate his life than to help make life possible for other preemies. This mom knew that. She knew as most NICU parents know, that blood is necessary to sustain these little ones.
The drive gave me an excuse to finish up his baby scrapbook, so it could be displayed at the recovery table. When I went to give blood, I was surprised that the blood drive personnel weren't very interested in hearing about the baby behind the drive. I was introduced to them as the mom of the baby, but still, only nods, no questions.
Turns out that most hosted drives that they had worked were hosted in honor of those who had passed. There was a little shock when I told them how well he was doing at home. "He's still alive?"
I think we need more drives in honor of those who have survived, and with gratitude to those who made it possible. And we need to send out more thanks.
So, here:
Next week Tuesday I'm taking my lunch break to save a life. I now have a name and face to go with that donation, and that keeps me giving, as long as I am able. Thank you donors!
P.S. I just heard this morning that Michigan Blood published a story about JAM and me. Read it here. I hope it inspires others to give.
My son was born at a gestational age of 23 weeks, 21 weeks into my pregnancy and 17 weeks before his due date. He was 1 lb 5 oz and about a foot long. Those are the numbers, and this is his story.
Showing posts with label what to buy. Show all posts
Showing posts with label what to buy. Show all posts
Thursday, February 6, 2014
Sunday, July 21, 2013
What to buy for a micro-preemie?
A year ago today I had a handful of friends drop by the hospital to say "hi" and "congratulations." For a few of this handful, Steve, the proud papa, brought them to the NICU to show them Jonathan through his isolette. That shocked people who, like us, worried that they might break him. They all declared their health (no sniffles allowed!) and scrubbed in extensively before walking in the room, and even then they weren't allowed to open the isolette or touch him (or anything that touched him) so I felt fairly confident about it.
It was a little odd feeling. Part of the reason I wanted close friends and family to see him was that I wanted them to know him. I didn't know how much time we'd have with him. For the moment I felt like the isolette shielded him some.
I wanted others to see how perfect his fingernails were, how he already had dark brown hair growing in and the same widow's peak I had. I wanted them to marvel at how one so small could be so beautifully and completely formed. I wanted him to be known.
At the same time, I wanted him protected. And protected here meant low lights. No lights. Keep his eyes safe. Keep a blanket over the isolette. Looks were peeks and not long stares. Conversations about him happened on the way to the room or after we'd left the room, but we tried to keep his room quiet.
When he got moved into a crib months later I would become much more protective about even who visited. Knowing someone might carry a cold and not know it, might cough and have him breath it in, these things became risks. It might have been an illusion, but it seemed that the isolette protected him from us, from us. It seemed all right to bring one or two people by. If nurses and doctors could see him, I wanted close friends to see him too.
A week after our son was born, another friend had a baby born severely prematurely. Like our son, their child was also on the brink of life and death simultaneously. We mourned that the pregnancy had come to an end, we didn't want them to join us in the NICU. Not for months, if they could help it.
At the same time, they had a new baby. We'd walked the bed rest road with them, from separate hospital beds. We wanted to get something to celebrate the birth. Even if this wasn't ideal, this was the baby's birthday. We must celebrate.
But what if their child didn't make it?
We understood better why we weren't getting showered with gifts and balloons, why reactions from friends were awkward and sometimes strained.
It's hard to know what to do.
In fact, it's hard to know if doing something, anything, might come at a very inopportune moment, if it might not hurt more than help. What if I buy this cute outfit, send it to them hoping their child will grow into it, and then... and then something happens?
To back up a bit, we saw the other baby's dad a few days before his child was born, a few days after Jonathan was born. Possibly even a year ago today, if my sense of timing is right.
"Is he still alive?" was his first question to us as we passed him near the hospital food court, me in my wheelchair on my way back to the recovery room from the NICU, and Steve pushing from behind. From anyone else, to anyone else, it might seem rude, insensitive to ask. But from him, I saw in his eyes, it was the plea from a praying father. He was asking if Jonathan was okay, he wanted our son to be okay, but just as much he was asking, "Can my child make it? If my child is born today, what might happen? Is there hope? Can babies like this live?"
"Yes! He's doing great!" we replied. And since he, like us, hadn't had a chance for a NICU tour, Steve made arrangements to show him the NICU -- just in case his child was born early too.
And the baby was. And now we were, a week out from our own delivery, trying to figure out how to celebrate life in a way that wasn't over the top, but still acknowledge and rejoiced in this new being. Because acknowledging is important. Remembering that we are new parents, that a baby has been given to us -- it is so important. We remember these early days.
So, finally, to my list. If you have anything to add, or other suggestions, post them in the comments below.
DON'T BUY (at first)
It was a little odd feeling. Part of the reason I wanted close friends and family to see him was that I wanted them to know him. I didn't know how much time we'd have with him. For the moment I felt like the isolette shielded him some.
I wanted others to see how perfect his fingernails were, how he already had dark brown hair growing in and the same widow's peak I had. I wanted them to marvel at how one so small could be so beautifully and completely formed. I wanted him to be known.
At the same time, I wanted him protected. And protected here meant low lights. No lights. Keep his eyes safe. Keep a blanket over the isolette. Looks were peeks and not long stares. Conversations about him happened on the way to the room or after we'd left the room, but we tried to keep his room quiet.
When he got moved into a crib months later I would become much more protective about even who visited. Knowing someone might carry a cold and not know it, might cough and have him breath it in, these things became risks. It might have been an illusion, but it seemed that the isolette protected him from us, from us. It seemed all right to bring one or two people by. If nurses and doctors could see him, I wanted close friends to see him too.
What do you get for a person who just had a baby, when the baby is very very sick?
A week after our son was born, another friend had a baby born severely prematurely. Like our son, their child was also on the brink of life and death simultaneously. We mourned that the pregnancy had come to an end, we didn't want them to join us in the NICU. Not for months, if they could help it.
At the same time, they had a new baby. We'd walked the bed rest road with them, from separate hospital beds. We wanted to get something to celebrate the birth. Even if this wasn't ideal, this was the baby's birthday. We must celebrate.
But what if their child didn't make it?
We understood better why we weren't getting showered with gifts and balloons, why reactions from friends were awkward and sometimes strained.
It's hard to know what to do.
In fact, it's hard to know if doing something, anything, might come at a very inopportune moment, if it might not hurt more than help. What if I buy this cute outfit, send it to them hoping their child will grow into it, and then... and then something happens?
To back up a bit, we saw the other baby's dad a few days before his child was born, a few days after Jonathan was born. Possibly even a year ago today, if my sense of timing is right.
"Is he still alive?" was his first question to us as we passed him near the hospital food court, me in my wheelchair on my way back to the recovery room from the NICU, and Steve pushing from behind. From anyone else, to anyone else, it might seem rude, insensitive to ask. But from him, I saw in his eyes, it was the plea from a praying father. He was asking if Jonathan was okay, he wanted our son to be okay, but just as much he was asking, "Can my child make it? If my child is born today, what might happen? Is there hope? Can babies like this live?"
"Yes! He's doing great!" we replied. And since he, like us, hadn't had a chance for a NICU tour, Steve made arrangements to show him the NICU -- just in case his child was born early too.
And the baby was. And now we were, a week out from our own delivery, trying to figure out how to celebrate life in a way that wasn't over the top, but still acknowledge and rejoiced in this new being. Because acknowledging is important. Remembering that we are new parents, that a baby has been given to us -- it is so important. We remember these early days.
So, finally, to my list. If you have anything to add, or other suggestions, post them in the comments below.
THE LIST of micro-preemie baby birth present ideas
BUY- A card. Have it celebrate. Tell us you're praying if you are a praying sort of person, but also tell us that you are delighted for the new life. Because a part of us is also mourning the loss of all the baby celebration stuff. So, celebrating with us is important. But being sensitive to our possible sorrow (though not all of us experience that) is also important.
- Gift cards to food places. Gift cards to restaurants or fast food places near the NICU is just as important as bringing us food. Unlike the moms and dads who take the baby home with them, our baby was stuck in a hospital. So we spent as much time as possible there, which meant we didn't have any time to put a casserole in the oven on some days.
- Food and snacks. Food is always good, even if it is a casserole that needs to be put in the oven, because it spells "comfort" and "love" -- and NICU parents need both. If you can give us something that we can easily throw in a Tupperware and bring to then NICU with us, all the better.
- Blankets/quilts. Especially hand made thick (crocheted or knitted) blankets and quilts. We can use them to cover the isolette to keep the light out when the baby is still so small, and can use them as a blanket for the floor for "tummy time" when the baby is bigger.
- Very tiny booties and hats. If you're crafty, you'll have to make these. Or maybe there's a place online to buy preemie booties. My son couldn't wear them until he was three weeks to a month old, so if it's a very early micro-preemie, but the first "clothes" that these kids wear are hats and shoes. Just make the booties out of stretchy fabric and/or so that they have a tie at the top so they can both go over the pulse ox monitor and still stay on. And if they're too big (they probably will be) baby will hopefully grow into them in the next few months. Plus, this is a small gift -- a memento of how much the baby is loved. Note that keeping heat in isn't a function of these earliest hats, so make them soft, comfy, and stretchy as well. If the baby is on CPAP, they can't wear a hat probably. So then just go for the booties. And don't make them of cottony stuff that will get miserable in humid temperatures, because the baby's isolette will perhaps, for the first week, be very moist.
- Flowers, but be careful. I love flowers. I appreciated the ones that were cheery and bright. I appreciated the potted ones that I could add to my garden. I did not like the huge bouquets that seemed appropriate for sympathy or funerals. I also wasn't sure quite what to do with the ones that looked all baby appropriate. I couldn't put them in Jonathan's room, and at my house -- empty still of all baby gear, his room still set up to be my "bed rest room" -- they just looked silly.
- A care basket for mom and dad. Something that says "recover well," because recovery from birth -- especially traumatic birth -- is hard. Put in it food and snacks, cute cards they can write in, fancy sodas, cookies, (I like food, can you tell?) maybe a conversion chart from grams to pounds and ounces (those are really helpful), possibly even a pretty sign that says "welcome baby" to go on his or her hospital room wall. They won't see it, but mom and dad will.
- Our NICU had magnetic bulletin boards for every baby. If your friend's NICU has the same, buy cute magnets to go on the board. Bonus here is that (a) has a purpose in decorating the baby's room and (b) isn't huge, so if baby doesn't make it, mom and dad can either keep or toss (depending on how they deal with grief) without feeling too bad about it.
DON'T BUY (at first)
- Stuffed animals. Most NICUs won't let us put these in the baby's room, so we will have the stuffed animals at home. Plus, stuffed animals are preemie baby sized -- lots of opportunities for triggers here.
- Balloons -- although I have to say, when Jonathan came home, my neighbor tied a balloon to our mailbox that said "It's a BOY!!!" and I nearly cried. Perfect. But these baloons are not allowed in the NICU, so again, without the baby at home, we just have a floaty celebratory item screaming a reminder that our child isn't there to celebrate his arrival with us.
- Clothes -- well, not yet at least. It was over a month before my baby was able to wear clothes, and then the hospital provided cute preemie shirts. We DO want clothes (please!) but you can wait until the baby is near 27 to 30 weeks gestation to buy anything. If you get anything for a baby under 32 weeks, you may want to knit/sew it yourself. You may find even the preemie outfits to be too small.
- Large items. Again, we want them, eventually -- so if you really wanted to buy our baby his/her crib, do. But wait a bit. Or send us a gift card. My mother-in-law was born early, and her mother says that there was nothing worse than coming home every night for three weeks and staring at the empty crib at the foot of her bed, knowing her baby was far away. Speaking of which -- showers. If we're first time parents and then we have our baby three to four months early, we probably do eventually want but might not yet be ready for a shower. Not at first. Tell us you want to throw one, but understand if at first the idea of leaving our baby alone for a night to accept gifts for our baby -- it might be too much. Give us a few months.
All of these are my opinions only, your friends might be different -- so ask. Here's another blog to give you some other idea. And this is designed based on my experience as a parent of a micro-preemie. Premature babies born later in the pregnancy have different needs, so while the no balloons or stuffed animals stuff probably still applies, the other things may not. And if you are reading this with a friend in mind, thank you for caring!
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