Saturday, August 30, 2008

Weekends in the NICU

When your baby is in the NICU (especially for an extended period), one day starts to melt into the next. It's sometimes hard to remember if you're coming or going, let alone what day of the week it might be. Hospitals don't shut down for the weekend and it's business as usual for the doctors and nurses. Surgeries still happen. Charts are still read. Machines still beep and whir constantly.

You can't shut down your worry or "take a break" just because Saturday has rolled around. It's just not that simple. Your baby's health is likely on a roller coaster ride and there's no telling when the next dip will occur. Our darkest day in the NICU occurred on a Saturday when we received the dreaded phone call, "You better get over here. She's not doing well."

Knowing all of this, there are still a few things I would encourage you to do when those weekends roll around:

  • If you're religious, try to attend a service. If you really do not feel as though you can leave the hospital, check to see what types of services are given at the hospital chapel (ours offered celebrations for three different faiths) or at least take a few minutes to retreat and pray. This helps renew your spirit and also maintains a little normalcy in your life.
  • Take advantage of the visitors you're likely to see on weekends and not weekdays. Most of your friends and family will be working during the week and will come to see you and the baby on the weekends. If Grandma is in sitting with your baby, give yourself permission to take a bath, go get your hair trimmed, sit quietly with a cup of coffee. You can feel more at ease knowing your child is not "abandoned" and those few minutes may be just what you need to feel re-energized.
  • Learn to do even more for your baby. While medical procedures do not stop just because the weekend is here, they do slow down. Non-vital surgeries and tests are usually put off until Monday. It's often just you, your nurse, and your baby hanging around your baby's bedside. There are far fewer interruptions on Saturday and Sunday. This is a great opportunity to take on some more responsibility in your child's care. It was on the weekend that I first helped bathe my daughter. That was also when I first practiced threading the NG-tube down through her nose into her tummy. And when I learned to fortify the milk for her feedings. I found that our nurses seemed to have a little more time to work on these things with us on the weekends.
"Weekend" definitely takes on new meaning during a hospitalization, but there are ways to take advantage of it. I encourage you to try to make the most of your Saturdays and Sundays!

On Monday, I'll be addressing "Holidays in the NICU" (I feel like I have a bit of expertise in this area since my daughter was born on Christmas Eve!), so be sure to check that out too.

Friday, August 29, 2008

Dealing With Insensitive Comments, part 5 (weeklong series)

So now you're home. Hopefully you've settled into a bit of a routine. Maybe you've "graduated" from some of your original equipment. After a few months at home, many babies will be weaned off of supplemental oxygen, some will be able to have trachs removed, others will begin to feed by bottle or breast. Follow-up appointments will continue but, theoretically, things should be getting easier and more routine by now. It is also likely that your child will still bear the mark of his or her prematurity through some type of outside help. Many former micropreemies move from a naso-gastric (NG) tube to a G-tube which feeds directly into the baby's stomach. It is also common for preemies to have vision or hearing problems thus creating the need for glasses or hearing aids. Each child is different, of course, and there are many more examples I could give. These are just some of the more common ones.

The longer you're home, the more accustomed to things you become. And, it seemed to me, the longer I was home, the less frequently I would hear blatantly insensitive comments. That's a good thing... but it also means that you tend to be less prepared. My former micropreemie is now 2 1/2. By all accounts, she faired very well. She was completely off of oxygen after a month at home and began eating by bottle just over two months after her homecoming. She is extremely near-sighted (thanks in part to genetics and in part to a severe case of ROP- I'll write more about Retinopathy of Prematurity in another post sometime), and as a result, she wears glasses. She is also small for her age, tipping the scales at 25 pounds, fully dressed with shoes.

Here are some remarks that I heard long after we first arrived home:

"Do they think she's all there, you know, mentally?"

Yet again, I actually think the people who ask this are just really curious how well C. is doing. Maybe the fact that she receives some speech and occupational therapy makes them question her intellect. I'm really not sure. But, as in a couple of previous cases, the best reply to this is simply, "We have no reason not to think so." And I recommend that response even if your child has a known condition that may cause significant delays. The question is insensitive and doesn't merit going into detail.

"Why does your toddler have a bottle? Don't you know that's bad for her teeth?"

This was a very tough one for me. Because I really WANTED to get my daughter off the bottle. And she was happy to ditch it. But, the fact was, she didn't drink enough milk at a time from a cup and so the Developmental Pediatrics team insisted we go back to the bottle and stay with it until she would drink at least six ounces at a time from a cup. As a result, she was past her second birthday by the time we were finally able to get rid of the bottle for good. In response, I would simply say, "It is what her doctor recommends" and then I'd try not to get defensive.

"With everything they can do these days, you'd think they could at least fix her eyes!"

Truth? It really doesn't bother us that C. wears glasses. We consider ourselves very blessed that that is all we really deal with. And I tell people that. I also tell them this: "I honestly think the medical researchers have more important things to figure out than how to get rid of my daughter's glasses."

"Who does she think she is, leaving this little sibling at summer camp?"

This one made me laugh, because I overheard it. It wasn't actually said to my face. (As a result, I did not need to come up with a response.) You may hear things like this from time-to-time because former micropreemies tend to be on the small side. My daughter weighs the same amount as her 10-month old cousin. She weighs what my son weighed at six months! Because of this, there are plenty of 1- to 1 1/2 year olds running around who seem bigger than she is. Even though she met the age requirement to participate in the summer program, there were parents who thought we received special treatment. You can easily ignore these comments. Just have a little chuckle to yourself.

"So... you're all done having kids then, right? Since you can't carry them well?"

Ouch. I will never understand why people feel they have the right to weigh-in on so many private issues. It starts as soon as you announce your pregnancy, continues when you bring the baby home, and overlaps into private choices like the above. If you ARE all done and you feel comfortable sharing that, go ahead. If you're not sure or you DO plan to have more, I suggest saying, "That has yet to be determined" or "I don't remember saying that." Try not to defend your body and biology. I bite my lip to keep from pointing out, "I carried an eight-pounder full-term, people!!!" That information is nobody's business.

So there you have it. I wish I could tell you that the insenstive comments stop. But I'm not sure that they do. I can say that they usually diminish. You can also take comfort in the fact that all parents face insensitive comments in some shape or form at some point. The best thing we all can do is have a little consideration before we speak. Pause for a second. Run it through your head before you let it leave your lips. Life is tough enough without us making it harder on each other.

This concludes this weeklong series on insensitive comments! If you missed any of the earlier segments, you can find them here:
If you have a moment, please let me know in the comments:

  • Did you enjoy the series format or would you prefer one long post?
  • Would you rather see a series stretched out, e.g. one segment each Wednesday?
  • What kinds of topics would you like to see addressed in a series?
Thanks again for being here!

Give it a Lot of Thought, Not a Lot of Cash

If you've just learned of a friend or family member who has given birth to a very premature baby, you may wonder what to bring. Some of the traditional offerings just don't fit for a family who faces months in a hospital. Hot casserole? Nowhere to heat it... and kind of messy. Sweet little newborn outfit? An OK choice, but keep in mind that the parents may likely not be allowed to dress their baby for weeks, maybe more (it has to do with maintaining consistent body temp). Cute nursery toys and decor? Odds are fairly good that the proud parents haven't even finished the nursery at this point. What to bring, what to bring?

My advice? Don't break the bank. Especially if you think you may decide to pick up one of those darling outfits or toys later on. Here are some things that are simple, but thoughtful, and likely to be appreciated:

Entertainment (Parents of tiny preemies spend a lot of time sitting by their baby's bedside, not able to hold their infant yet. The beeps and alarms make it too distracting to try to read, but having something to keep your hands busy is very welcome. Personally, I crocheted tiny hats and blankets. My hubby preferred puzzles.):
  1. crosswords, sudoku, or word finds
  2. yarn and crochet hook/knitting needles
  3. journal
Nourishment (I touched on this in more detail here, but here are some really quick, portable choices) :

  1. pretzels, crackers, or nuts divided in small servings
  2. cereal or granola bars
  3. bottled water and juice
Encouragement (You can't be there all the time-- show how much you care and support the parent with one of these options.):

  1. book of devotions or poetry (these are short enough to maintain focus and read)
  2. supportive card or letter
  3. express a willingness to receive a phone call at any hour if the need arises
Fulfilling needs from any of these categories will provide very real help to a family in crisis. You may even have some of these things rolling around your home already. It does not have to be fancy. Just give it a little thought... that's all it takes to brighten someone's day.

For more frugal ideas, check out Frugal Friday, hosted at Crystal's Biblical Womanhood.

Thursday, August 28, 2008

Dealing with Insensitive Comments, part 4 (weeklong series)

As you leave the NICU with your baby, you will most likely be extremely excited and also a little nervous. You'll have a lot of cheerleaders in your corner- family, friends, NICU-buddies, medical staff. You'll worry about a lot of things but one thing you might not even consider are some of the remarks you may receive from all manner of folks now that you have your baby home. Here are a few that you may hear and some possible replies. (Please always remember, too, that especially if the comment comes from a stranger, it's sometimes best to completely ignore the individual. Don't waste energy with replies to each and every opinion you're bound to hear.)

Insensitive Comments You May Hear Upon Homecoming:

"What is WRONG with him/her?"

I shuddered typing this. Far and away, this was the most horrible thing I would hear. I think people were just shocked by all the equpiment I had to cart around along with my baby girl. Nonetheless, this is an inappropriate, hurtful thing to say and my recommendation is that you either completely ignore the ignorant fool who asked it or reply "Not a thing" and walk away. Do not dwell on this type of comment. Your beautiful child is home and that's a wonderful achievement!

"What's that thing sticking out of your baby's mouth/nose/stomach/etc.?"

Ah, the joys of this query. Most people take for granted that they will leave the hospital with "wireless babies". Not so with tiny preemies. It is not only not unusual but in fact quite likely that your baby will have some kind of tube sticking somewhere out of his or her body, be it a nasal canula, an NG-tube, a G-tube, a home vent tube, etc. If a child asked this question, I would answer very simply and politely, "Oh, that tube helps her breathe" or "That tube helps her eat." That's enough to satisfy the curiosity of a child. For grown-ups, I'd usually explain what it was, but I was perhaps not so patient and polite. It might sound more like this: "That THING is a nasal canula which provides oxygen so that she can breathe."

"Were you a heavy smoker through the pregnancy?"

This question popped up because my daughter came home on supplemental oxygen (as many very premature babies do). Not surprisingly, it came from a stranger. I'm hoping those of you reading this blog can guess what the answer to that is but, if not, oh well. I didn't answer the random woman who asked me because it was none of her business. Heavy smoking during pregnancy is more likely to lead to low birth weight and asthma conditions than it is to result in a baby being on oxygen. But it's not your job to tell people that. My advice? Walk away.

"What do you mean she's FOUR MONTHS OLD? She looks like a newborn."

People like to ask about the age of your child. This is just a fact of life. They ask me about my 2- and 3-yr olds all the time. There are two schools of thought on this one. The preemie book I read while in the NICU advised that you give your child's corrected age. So, for example, at Easter time I would have told people my daughter was one day old when, in fact, she was almost four months. Personally, this seemed too weird to me and invited a whole host of other problems if the conversation continued. So, after people reacted in shock, I would say very simply, "Yes, she's still very small, she was born very early." End of story. Either one works; it's a matter of what you're comfortable with.

"You don't need to be so rude! I've certainly been around babies before!"

This comment tends to be heard after you've requested that an individual either a) wash their hands before touching your baby, b) wear a mask around your baby, or c) simply NOT touch your baby. No matter how kindly you phrase your request, some people will be offended by these stipulations. My recommendation? Tell them your child's doctor insists that's the only way to keep your baby healthy and out of the hospital. If that's not a good enough reason, walk away.

I don't have any "new" recommendations for friends and family members today. By now, you're probably pretty comfortable with the preemie idea and you're most likely super excited that the baby gets to come home!

My advice today is for all of us and it has to do with just thinking before you speak. It is one thing to be curious about something; it is another to be rude, blunt, or accusatory. Comment only if you have something positive to add. One of the nicest things anyone said to me after I brought my baby girl home came from a woman I'd never met while I waited outside an ice cream shop. As I stood there with my toddler son and my infant daughter, the woman smiled, first at C., then at me.

"My daughter had an NG-tube too," she said, "She just got her driver's license." And with that, she smiled and left.

Now THAT was a welcome comment.

If you've missed any of the earlier segments of this series, you can find them here, here, and here. Don't miss tomorrow when I'll share some insensitive comments you may hear during life at home with your preemie. That will be the last post in this series.

Three Things You Should Do While Your Baby is Still in the Hospital

One of our most beloved nurses made this casting of C's tiny hand when she was one week and one day old. The card she attached reads:
One tiny hand to
guide and hold,
One tiny life to shape and mold,
Each child, a gift
from God above,
A symbol of His strength
and love.

  1. Get hand and footprints or, even better, a casting of one of your baby's tiny hands or feet.
  2. Celebrate milestones-- hitting two pounds, going off a ventilator, moving to a crib, etc.
  3. Bond with at least one nurse... you're going to be there for awhile. It'll be much easier if you have a member of the medical team with whom you're very comfortable.

The Birth Story

I had planned to post C's birth story on Monday, but since FishMama is hosting a story swap today, it seemed like the right time to do it. And so, without further ado, here's how my baby girl's very early birth came to pass...

On December 22, 2005, I was at home with my ten-month old son. I felt a little tired and achy and I attributed that to pushing myself too hard the day before trying to get last minute Christmas tasks accomplished. Right around noon, I felt some liquid and a quick check revealed that I was bleeding. My husband was working two hours away, so he called one of his sisters to go with me to the doctor's office. My biggest fear was that they would put me on bed-rest... how was I to take care of my son if I was laid up in bed? It never occurred to me that I would hear this-

"You're in labor. Three centimeters dilated and your bag of waters is bulging. You need to get to IU Hospital. We can't handle a baby so small here."

I was shocked. I was also shocked when they gave my sister-in-law directions and told us we'd get there faster if she drove rather than wait for an ambulance. What?!?!?

I called my husband and he will tell you that I was amazingly calm. So calm that he thought I was joking for a second, but quickly realized that I would never joke about such a thing. His work was far closer to the hospital than I was, so he headed over there and got me pre-registered.

It was a Thursday evening when I arrived at the city hospital. At this point, I still really believed that they would give me something to stop my labor, maybe observe me for a day, and send me on home. I fully expected to be home for Christmas. Instead, they told me that I would not be leaving the hospital until I had the baby and they were hoping to get me to hang on until at least 28 weeks. The rest of the evening passed with a series of visits from OB's, high-risk OB's, neonatologists, and developmental pediatricians. They all seemed to arrive in pairs and they all shared scary statistics with us, e.g. "If your baby is born at 24 weeks, he'll have a less than 50% chance of survival. If he does survive the birth, there's only a 40% chance he'll make it through the next 48 hours. Of the babies who DO survive, 40% will have a severe disability (e.g. blind, profoundly retarded, and unable to walk), 40% will have a moderate disability (e.g. blind, deaf, or cerebral palsy), and 20% will be considered "normal" (correctable hearing and visions problems fall in this category, as do minor developmental delays)." With every week of pregnancy that passed, the statistics got better and better. At this point, I was 23 weeks 5 days pregnant. It was a terrifying lot of information to take in.

They started me on magnesium. This is sometimes successful in halting labor. It also gives you vicious hot flashes and some nausea. Small price to pay. They also gave me antibiotics. That night, I received the first in a series of two steroid shots that can accelerate lung development in the fetus. These shots are only effective if both are administered and they have to be given 24 hours apart. I would not get the chance to have the second.

Neither my husband nor I slept much that night. It was a scary, scary time. The next day was Friday and things seemed to look up. I felt no contractions and the monitor did not pick up on any. They removed the fetal monitor because my baby (we did not know gender at this point) never showed any signs of distress. Late that afternoon, my husband headed out (with my blessing) to go give our older child his bath and put him to bed. While he was gone, a nurse helped me shower and helped me into a REAL bed. Up 'til this point, I'd been in a birthing bed.

I was so content and comfortable for the first time in days. I was also exhausted. My eyes drifted close just as my husband returned. He tiptoed inside, hoping I'd actually get some rest. Shortly after, a nurse came in and asked me to change positions. As I did, she left the room.

I felt a huge gush. I told my hubby, "I think I'm bleeding. A lot."

He lifted the sheet and quite calmly said, "I'm just going to get the the nurse, hon."

The nurse came in and within seconds, the high-risk OB was there too. They turned on a blinding light and he checked to see if my labor had progressed.

I was completely dilated. I had never felt a contraction.

Things got really wild at this point. Once again, we were swamped with teams of doctors telling us all the risks and concerns. They pointed out that the type of C-section I would need (classic- cut both ways) had many risks and a difficult recovery period. But this was my baby's best shot. I was 23 weeks 6 days pregnant at that point. An infant so tiny would find a vaginal birth traumatic... also, she was footling breech because babies haven't "turned" that early in pregnancy. The odds of our baby doing well were not good. But I signed the consent form and they whisked me off to the O.R.

You know that your surgery is really an emergency when this happens... the operating table was broken and would not lower to where the surgeons could reach me. They called for a replacement and were told it would take three minutes to get there. The head OB said, "There's no time. We'll stand on stools."

The anesthesiologist had told me he would have to put me under and intubate me because they couldn't risk having me sit up for the spinal. They feared the baby would just slide out with me being fully dilated. Once he really looked at me though, he said, "You're awfully skinny for a pregnant lady, you might be able to curl up on your side and I'll do the spinal. Then you'd be awake." And that's exactly what we did. I was so fortunate to be conscious for the birth.

There were sixteen medical personnel in the room for my C-section. They almost forgot to get my husband. Fortunately, the anesthesiologist remembered and a nurse went and retrieved him just as they were starting to cut.

My baby was born at 12:32 AM on Christmas Eve. When she was born, she cried. That might not seem remarkable, but it almost never happens with 24-weekers. The head of neonatology at the hospital later recalled, "When she was born, she actually cried, and everyone in the delivery room was silent and awed... because that just doesn't ever happen with a tiny, tiny 24-week infant." Tough cookie, my little girl.

She weighed in at 1 lb 5 oz and measured 11 3/4" long. Her footprints are the same size as my thumbprints on her birth record. She spent 3 1/2 months in the NICU of an amazing children's hospital. She's beautiful, strong, determined, and precious.

And that's how my journey of parenting one of the tiniest of miracles began...

Wednesday, August 27, 2008

Dealing with Insensitive Comments, part 3 (weeklong series)

Once we were settled into the NICU, it seemed like maybe the insensitive comments should stop. By now, I thought, people realized that (for better or worse) my baby was out in the world, alive, and fighting. During our NICU and Ronald McDonald House stays, I met some of the most supportive and helpful people you could imagine. Unfortunately, I was still subjected to some all-new insensitive remarks. In no particular order, here are a few and also some suggested responses:

Insensitive comments you may hear while your baby's in the hospital:

(courtesy of my wonderful hubby) "This must be so hard for your wife."

I think perhaps I was more outwardly emotional and approachable through those early days. Because of this, doctors and nurses seemed to be more in touch with my suffering. Trust me when I tell you-- he suffered too. Sometimes more than me-- not only did he have the same concerns about our fragile daughter's life, but he also had to worry about me as I recovered from a massive, messy C-section. He simply replied, "Yep." I would urge you to take it a step further and say, "It's been really tough on us, but we're getting through it together." That should be a gentle way to get the point across...

"If babies can do so well born so early, why do we have to suffer through 9 months of carrying them?"

Are you kidding me with this? I've been 7-, 8-, 9-months pregnant before. I'm not discounting the discomfort some women feel during those later months. But I can all but guarantee that the aches and pains of pregnancy are not nearly as devastating as watching your baby fight to live. I suggest simply saying, "I'd much rather still be pregnant; we're not out of the woods yet."

"At least you don't have to be fat and pregnant anymore!"

I really think this person meant to make me feel better. But the fact of the matter is, I wished desperately that I was still pregnant. It took weeks before I'd stop waking up in the morning with my hand on my belly and all of sudden being hit with an overwhelming sense of emptiness and failure. I felt cheated. I really wanted those additional 16 weeks. It was a sore consolation prize to be thin. Because the intention was good, I merely smiled at this remark. But I encourage those of you who are talking to a preemie parent to think very carefully about all the angles.

"Do you think she'll remember all this?"

Good heavens, I hope not! And that's exactly what I said.

"It's so great that she never cries!"

My little girl did not cry because she couldn't. She had a ventilator tube down her throat. I responded to this with, "Yes, but we're eagerly awaiting the day we hear her cry again. When she first cried in the O.R., it was the most beautiful sound in the world." Doesn't every parent cherish that first cry?

So, what are some better things to say? Nothing incredibly new on this list...

"Is there anything I can bring you?'

"We'll be praying for you."

"What can I do for you? Call someone? Write thank you notes? Walk your dog?"

The NICU experience is a roller-coaster ride and often the best thing to do when you're on the side-lines is just wait it out. Let the parents talk when they need to, but don't try too hard to make idle conversation.

Be sure to check out parts one and two of this series. Don't miss tomorrow's post on dealing with insensitive comments when you first bring your baby home!

Organizing bills, applications, misc. paperwork

Ryann emailed me with this request: "One thing I'd love to see on your blog is how you keep all the medical/financial paperwork organized. I have found myself with boxes and boxes of bills, statements, benefit coverages, doctor's office receipts, handouts about vaccinations, medications, and the like."

I feel your pain! Seems like you start collecting paperwork from your first day in the hospital and it just... keeps... coming.

My method of organization is not very high-tech, but here it is. The drawer pictured above is the bottom drawer of our computer desk. It never did hold those hanging files particularly well (it seems to be slightly too wide), so I bought a whole slew of inexpensive folders. I used a black Sharpie marker to label them as shown below:

Inside, I file away informational paperwork, forms, etc. Because the fronts are clearly labeled, I can usually find what I'm looking for very quickly. The pockets keep the papers from flying around everywhere and enable me to take the file with me to appointments without things sliding out (as is prone to happen with file folders).

These are the categories you will find in my drawer:
  • Complete Insurance Claims
  • Apria/Pulmonary
  • Adolescent Psych/Neurology
  • EOB Aetna (our old insurance company)
  • EOB Anthem (our current insurance)
  • Developmental Peds.
  • Dr. C. (my doctor- because sometimes I need a doctor too!)
  • Paystubs/Tax Docs. (we have three of these- 2005, 2006, & 2007)
  • Social Security
  • Dr Z. (our pediatrician)
  • Medicaid/Children's Special Health Care Services (supplementary insurance)
  • Pending/Due Bills
  • A- Preschool & Therapy, Age 3+
  • First Steps
  • To Lock In SDB (safe deposit box)- we seem to get a lot of things that need to be locked up in the months following the birth of a child- birth certificate, soc. sec. card, savings bonds, etc... happily, I can report that this folder is empty which means I'm doing my job and getting to the bank!
Your needs will vary, of course, but this break-down works for us. Periodically, I grab a folder or two while my hubby and I watch TV and I pare down, shredding anything that's no longer necessary. Because it is all separated, this task seems manageable.

The best kind of organizational system is one you can keep up with. This method may not work for everyone, but it has helped keep me sane! It works for me! For more fun tips, visit Rocks in my Dryer!

What are your tips for keeping tabs on all those pieces of paperwork?

Tuesday, August 26, 2008

Dealing With Insensitive Comments, part 2 (weeklong series)

Today I want to mention a few of the insensitive comments that you might hear upon announcing the birth of your child. Back in July, I wrote a bit about how to help the parent of a preemie. It broke my heart to read an anonymous comment to that post in which a woman wrote about receiving two sympathy cards following the birth of her preemie-- a child who is now ten-years old, I might add. That is a classic example of insensitivity that you may face when you announce the arrival of your tiny miracle. Here are a few things I've heard:

Insensitive comments following the birth announcement:

"Wow, I hope she lives."

Well, yes, you and me both. But that's sort of stating the obvious. The best reply to this is simply "Thank you", but I would encourage others to reconsider before they choose this for a comment...

"Is she normal looking?"

Wow. You know, it would never occur to me to ask the parent of a full-term baby if their child was ugly or deformed even though not all new bundles of joy are perfect and beautiful. There are two ways to answer this one effectively: "Define normal." or "She's perfect." Both are brief and do not invite a whole lot of further discussion. There is a part of me that actually understands what the ask-er wants to know hear. They truly wonder what exactly a "half-cooked" baby looks like. I think most people might be surprised to find out that they look like, well, babies. Tiny, skinny, veiny little babies.

"Will she turn out OK?"

I truly believe this is a well-meaning question. It is simply ill-timed. I responded to this one with, "It's too soon to tell, but she's doing so well. She's so strong." Honestly, no parent is really in a position to answer this question with any degree of certainty. Could I have predicted that my son would have a severe speech delay when I looked down at his sweet newborn face? Of course not. Neither can preemie parents foresee the exact future.

Better things to say? Not surprisingly, they're pretty simple...


"I can't wait to see pictures!"

"Let us know how we can help."

Surprised? Those things don't differ a whole lot from what you'd say when someone has a healthy, full-term baby. It doesn't have to be any more complicated than that.

Be sure to check out yesterday's post on insensitive comments during pregnancy, labor, & delivery. Also, don't miss tomorrow's advice about undesirable remarks received during your hospital stay!

My Stethoscope

(Setting: I sit across from the pediatrician with my sick baby girl coughing on my lap.)

Dr. Z: "It's down in her lungs now. You can hear the faint wheeze. If you had a stethoscope, you'd hear it too."
Me: "I have a stethoscope."
Dr. Z: (smiles) "Of course you do."

When I brought my baby girl home from the NICU, she came with a lot of equipment... oxygen tanks, tubes, monitors, etc. Because she could not safely drink from breast or bottle due to concerns about aspiration, we needed to learn how to feed her through a naso-gastric (NG) tube. This involved threading a thin, flexible tube through her nostril, down past her throat, and into her stomach. Once the tube was inserted, before each and every feeding, we needed to do something called "checking placement". This involved attaching a syringe to the end of the tube and pushing a small amount of air into her belly while listening with a stethoscope pressed against her abdomen. Correctly placed, we would hear a faint "whooshing" sound. This sounds like loads of fun for those 2 am feedings, doesn't it? Well, just like anything else, you get used to it.

I still have my stethoscope. Fortunately, I no longer need to use it to check placement; my daughter was able to start drinking thickened milk from a bottle about two months after our homecoming.

But that doesn't stop me from whipping out my trusty stethoscope. This tool has allowed me to hear the faint wheeze in my daughter's lungs that tells me she needs to be nebulized. It has enabled me to confidently call the pediatrician to report the rattle deep in my son's chest. It has also helped me fall back asleep at night after hearing clear, easy breaths that reveal sinus congestion but no chest issues. There's no question that I've been able to relax a whole lot more thanks to this little piece of equipment.

Do I love my stethoscope?

Of course I do.

For more tools that help you relax, check out Toolin' Up Tuesday, hosted at Life as Mom!

Why I Read the Birth Announcements

Ever since I was little, I loved to look at the birth announcements in the local paper. When I was in junior high and high school, this usually involved reading out the names along with my mom and offering our opinions. This tradition continued after I got married as my husband and I would check out what kinds of names people were coming up with. It was an endless source of fascination (and, admittedly, amusement) to see some of the names people would make up. Or how "kreeatyvlee" they would choose to spell them. Traditionalists at heart, my hubby and I had lots of chuckles about these...

We still read the birth announcements. Most Sunday mornings find one of the two of us calling out the news of new arrivals. But we do it for a different reason now...

Now we read the birth announcements to make sure every baby listed weighs in at over 6 lb. That's our cut-off. If the baby weighs less, I start wondering what may be the reason and I pray. There's little we like more than to see a column full of 7-, 8-, and 9-lb babes.

I know most women would prefer not to have to give birth to a 9+ pound infant. But to me, it's cause for celebration. Hooray for big babies!

Monday, August 25, 2008

Dealing With Insensitive Comments, part 1 (weeklong series)

I'm looking forward to kicking off several week-long series here. This week, I'm going to address how to deal with insensitive comments. It seemed to me like I encountered insensitive comments in many different ways at many different times during my journey of caring for my micropreemie. They started before my baby girl was even born and continue on to this day. I'll be breaking the week down like this:

  • Monday- pregnancy, labor & delivery
  • Tuesday- at the birth announcement
  • Wednesday- during your hospital stay
  • Thursday- homecoming
  • Friday- life at home with your micropreemie

I'm hoping this series will be helpful for parents who are trying to cope with receiving some of these comments. I'm also hoping it will be a good reminder to others to think before you speak.

Insensitive Comments heard during pregnancy, labor, & delivery:
"There must have been something wrong with the baby..."
Ok. Perhaps there is something wrong. Most likely no one has any clue at this point. If you really think about it, this comment offers little comfort either way. My recommended response to this is simply, "We have no reason to believe that is the case. Thank you for your prayers that everything works out."

"You shouldn't have lifted your other child so much..." (or fill in other 'point the finger' reason-- "you should have eaten better", "you shouldn't have had that glass of wine early in your pregnancy", "you should have been more careful and not fallen down that time"... the list could go on and on)
This one is flat-out accusatory. And I beat myself up about it a lot. It didn't help that the accusation came from an OB. The simple fact is that I DID lift my 29 lb 10-month old all the time. What was I to do? He didn't walk! He was a baby. For this, I replied, "Good to know" and tried to move on. I comforted myself with the knowledge that not one other doctor on the team recommended a weight limitation for lifting during my pregnancy. It's important to let those little things go-- people do far worse and have healthy, full-term babies all the time. It's just another "life's not fair" example.

"Your stomach is SO flat!"
Yeah, I know, this one sounds like a compliment. But, trust me, don't tell a woman who is in labor that she's "so thin!". When you know there's a baby on the way any minute, you aren't shooting for svelte. Big, round, and unwieldy would be just fine, thank you very much.

"Maybe it wasn't meant to be."
For one thing, this comment sounds to me like the child has been lost. And, for the record, I think it's a rotten thing to say in that case. But when this is said while you're fighting the progression of labor, trying desperately to hang on, it almost sounds like a death sentence. I chose to take it as "maybe your pre-term labor wasn't meant to be" (even though I knew darn well that was not the implication). This enabled me to smile brightly and reply, "thanks so much- that's what we're hoping!" My answer confused people, but it comforted me.

So, what SHOULD you say if you know someone who has gone into early labor? Here are three suggestions:

"What can I bring you? Who can I call for you? Is there anything you need done at your home?"

"This baby must be one tough, impatient little one. Good thing he/she has such a strong mommy."

"I'll be praying for you."

Take your pick. You just want to shoot for supportive and helpful. There's no need to try to guess or predict or explain anything. Leave that to the medical staff.

Tune in tomorrow for some advice on dealing with those "off" comments you might hear following the birth of your baby and also some suggestions for kind ways to welcome a loved one's micropreemie into the world.

The Title of this Blog...

I really thought long and hard about what I should call this blog. I didn't want to be too "clinical" and call it "Caring for Your Micropreemie". I also did not want to title it "Tiny Miracles", which implies a definite focus on just the babies themselves. I really wanted this blog to be a place where parents (and loved ones and friends) could come to find some support and information.

And I hesitated to even use the word "miracles". I'm still not entirely sure I like it. It's not that I don't feel that my baby girl is a miracle; I do! She beat extraordinary odds. But is not my son a miracle too? Aren't all children precious miracles in their own right? I firmly believe that they are. My child is not any more special than another because of her early birth. She is, however, one spunky, feisty, tough little cookie. And her story is pretty amazing...

And she is one of the tiniest of miracles. These itty-bitty babies, like all children, are miraculous blessings. Here, we talk about how to parent these tiniest of miracles. And how to support those who do...

"My story..." Monday, part 4

This will be my last entry of journal entries from our hospital stay. Next week, I'll share a little bit about what happened BEFORE my daughter made her early entrance into the world...

FRIDAY, JANUARY 13, 2006 11:56 AM, CST
sweet C. continues to do well. she is off her blood pressure meds and will be done with her antibiotics this weekend. her blood cultures have been negative for bacteria since the 7th. her pneumonia should break up on its own over time now... she will likely need some kind of respiratory support for awhile yet since she's so small and all this has been hard on her lungs, but that's ok. she weighed in at 740 grams yesterday, about 1 lb 11 oz. we're excited about that! her head ultrasound remained unchanged and that's a good thing... it means there's no bleeding going on in there. she will continue to get head ultrasounds every wed just to be sure. she's a little doll baby and we're so glad she's tough too! it's been such a joy to have her eyes open wide. thanks again for all the wonderful messages you all have left for us!

THURSDAY, JANUARY 26, 2006 08:53 AM, CST

it's been a LONG time since an update... sorry! we had a hectic few days. A. got sick with a high fever and we were dealing with that, trying to get him better for his first bday tomorrow! he's back to his healthy, smiley self again.

soooo... C. hit 2 lbs yesterday!!!!!! what a big girl! : ) she's doing just great with her feedings and is up to 16 mL (over half an ounce) every 3 hrs and they fortify the breastmilk to add calories. they had to up her ventilator settings the last couple days (as we've said, it's the roller coaster...), but she's still doing very well.

there was some discussion about a possible intestinal infection, but cultures revealed no problems. she is no longer getting weekly head ultrasounds because her last one was totally clear... we're sure they'll check again sometime, but not every wednesday any more.

C. spent an hour and a half doing "kangaroo care" with mommy yesterday and did just great with it. the only bad moment was when our little troublemaker decided to grab her oxygen tube and bend it! she's always up to something... : )

it's always so nice to read your messages... we are all doing well. it will be wonderful to print this journal and guestbook and show it to C. when she's older...

MONDAY, JANUARY 30, 2006 02:41 PM, CST


well, the spunky princess continues to thrive! she was doing so well on friday, A's bday, that they decided to take her off the ventilator already that afternoon! she is now on a machine called a c-pap that delivers pressure and oxygen through a little mask, but she has to do all the breathing on her own. she is doing exceptionally well on it so far! there is always the chance that she would need to go back on the vent, but the odds go down with each day, barring illness of course. she had a dip in her weight yesterday, but is now back up to 2 lb 2 oz. she is eating 18 mL every 3 hours and they fortify it up to 30 cal/oz to help fatten her up even more! one of the nurses has offered to teach mommy how to prepare her feedings one of these days. we had 2 hours of cuddling today and C. did very well with it. amazingly, our little spitfire has NOT tried to take off her oxygen mask yet! can't wait to update you with more crazy-C news! ; )


Thanks for reading!

Saturday, August 23, 2008

The 2-lb Party

Do you remember when it happened? Or maybe you're still waiting for that special day?

Either way, I'm glad you're here.

If, by chance, your life has not been touched by a micropreemie, let me share this simple truth. One of the first benchmarks and major celebrations we micro-parents have is that blessed day when your baby weighs in at a whopping 908 grams or more...

You've hit two pounds.

Time to celebrate...

Friday, August 22, 2008

Saving $$$ On Travel for Follow-Ups

Are you home? Really? Hooray!!!

And now for the follow-up appointments...

Your situations will vary, of course, but if you're parenting a micropreemie, it's likely that you will have a lot of follow-up appointments, especially in the first couple of months after discharge. Here are three things I would encourage you to look into to possibly save a little dough on the cost of making those trips:

  1. If you qualify for Medicaid (I recommended you check into that here), check into their transportation options. Our state program allows you to call and arrange for a ride to some appointments. Worth looking in to!
  2. If you've been approved for secondary insurance, call and ask about any reimbursement programs. Our state-funded insurance for children with special health care needs provides travel reimbursement for any medical appointments that require a 50+ mile round-trip drive. For us, that includes any appointment where we have to return to the hospital.
  3. Consolidate your appointments. In those early days, it was not uncommon for me to bounce from pulmonology to developmental pediatrics to radiology for a swallow study and on to opthamology. It was a LONG day, but it saved a lot in travel costs. Most receptionists are happy to work with what you've already scheduled; you just have to speak up.
What other suggestions do you have for saving money on this kind of travel?

For more frugal ideas, check out Frugal Friday hosted at Biblical Womanhood.

The Other Victim: Your Marriage

I don't mean to be overly dramatic with that title. I do want to address what too many of us forget while we're getting through the early days, months, and sometimes even years of caring for our micropreemies.

I would say (with quite a lot of confidence) that my husband and I had a strong marriage when our second child, our micropreemie daughter, was born. We had been through illness, death, and the birth of our first child together. We had been through emotional upheaval and the one thing that never seemed to falter was, well, US. We always stayed committed, always communicated, always formed a united front.

And then C. was born. All of a sudden, I was trying to recover from a massive surgery and my husband was struggling to make up missed hours at a job with no benefits. We had a ten month old who didn't yet walk and a newborn fighting to live. We were two hours from home with no family in the immediate area. In order to care for our older child and still visit our new baby, we went on "shifts". My husband's commute was long and my days of entertaining a not-yet-one-year-old in the Ronald McDonald house were challenging. We were both crippled with guilt because we couldn't be everywhere all the time. We were exhausted because he took the "late shift" for visits and I was still waking twice a night to pump (and often soothe our son back to sleep). We simply no longer had time to invest in our relationship.

I remember one night when I dashed over to the hospital after some sniping verbal exchange between my husband and me. Tears burned behind my lids, but I just didn't have time to deal my problems with him; I had a little baby to see. I ran into another couple in the hall, parents of another micropreemie baby girl. And I asked them, "Do you ever feel like this experience is beating the heck out of your marriage?" And they both said, "Oh, yes."

Turns out we're not alone. An article from USA Today declares in its headline:

Chronically ill child can doom marriage

Ah hah. Well, that's not such great news for those of us parenting our preemies. But there is plenty of hope. Just like in so many other situations, the old adages really do hold true. "What doesn't kill you makes you stronger" and "This too shall pass" were both phrases that I reflected on a lot.

We made it through, as you may have already guessed. We'll celebrate seven years of marriage in a couple months. While there's a whole lot we could have done better, here are a few things I think we did right:

1. We ate dinner together every night and touched base.
2. I called my husband immediately following any updates I received from the NICU.
3. We cherished and snuggled our older child too.
4. We visited the NICU together any time we had the opportunity, i.e. when another family member was around.
5. We shared a glass of wine and quiet conversation on Valentine's Day.

What did you do or are you doing "right" to nurture you marriage? What do you wish you would have done differently? Please share in the comments!

Thursday, August 21, 2008

Providing Hospitality to the Hospitalized...

Fishmama has a great recipe swap going on over at Life as Mom. They're sharing recipes you can give to the proud new parents when a baby is born... what a fun topic!

Here are ten great things to deliver (in bag or box or basket) to the parents of a micropreemie who are unlikely to have a kitchen at their disposal:

  1. bottled water
  2. granola bars
  3. jerky
  4. pretzels/nuts
  5. pre-made sandwiches (bonus points if you enclose condiment packets)
  6. yogurt/pudding cups
  7. fruit (apples, bananas, pears, etc. hold up well)
  8. string cheese
  9. individual snack packs (little baggies full of trail mix would be perfect)
  10. gift card to a fast, local restaurant
Quick is the name of the game. Squeezing in protein and whole grains will help keep these new parents going. These may not look impressive or glamorous, but they will be much appreciated. Trust me.

Smile at someone today...

Or, alternatively, "Be a pest like me..."

Either title could suit this post.

If you've been in the NICU for a little while now and have maybe settled in a bit (translation: you're no longer jumping at every beep and flash around you), I urge you to do just one extra thing today: Smile at someone new. It was kind of a standing joke between my husband, the nurses, and myself. I would always choose someone who looked super detached, lost, and- to be honest- unfriendly. That individual would become my "project".

Now, I'm not advocating that you truly pester or bother this person. Just be a consistent smile in his or her life. Say "hi". Introduce yourself if the opportunity arises. You'd be amazed at some of the relationships I managed to get going.

I like to think that maybe I brightened these individuals' lives a little. I can't say for sure. But I can tell you that it was wonderful for me.

And I can also tell you that I will forever be grateful to the couple who first smiled, said "hi", and introduced themselves to my husband and me...

Take care of yourself, too...

In honor of this week's "Three Things You Should Know Thursday", I want to remind you to take care of yourself too. It's easy to let your own care slide when you're riding the emotional roller coaster of having your preemie in the hospital. Here are three things that you should know that might help you decide to try harder to get some rest, nourish your body, and stay connected with others:

1. Your memory and decision-making skills are sharper when you're well-rested. You are going to be called upon to remember a LOT of numbers and conditions. You will also be asked to give consent to innumerable procedures. Letting yourself get some sleep will help you be more useful to your child when you're awake.

2. You're more likely to be successful pumping if you stay hydrated and well-fed. You cannot expect your body to produce quality food for your baby and if you're not providing it with quality food to start. (For non-nursing mommies and all daddies-- You also need to stay nourished just to have energy. This whole experience is draining enough without complicating matters. Aim to stay hydrated and get quality grains and protein several times a day.)

3. Stable relationships with others will provide you with the emotional support to carry on. Staying connected with others helps you to get help when you need it which may alleviate at least a little of the stress you're feeling. All babies can pick up on our stress levels; the last thing your tiny little fighter needs is to feel your tension.

So... take care of yourself. For your baby's sake.

Wednesday, August 20, 2008

When I feel sorry for myself...

... I like to look at this picture.

Just over a month old and barely two pounds, my sweet baby girl had just been taken off the ventilator and put on the C-Pap. Wires and tubes criss-crossed in and out all over her tiny body. Monitors and medications were still a constant part of her life. They stuck her tiny foot to draw blood every two hours all day long. But what did she do?

She shared her very first smile.

My precious inspiration.

Car Seat Flippin' Reminder!

Speaking of car seats, just a quick reminder...

Before you turn your baby front-facing, please be sure he/she is BOTH:

-at LEAST one-year old


-at LEAST 20 pounds

That's AND, people. If you're parenting a micropreemie, I'd be willing to bet you'll hit 1-yr old before you hit 20 lb. And, still, keep 'em rear-facing. It's safer. You don't endure months on end in a hospital to take chances with your precious child...
***Just a quick reminder- as always, ask your pediatrician if you have concerns. I am aware of at least two micropreemies who simply got way too long to be rear-facing anymore. They were well over a year but not quite 20 pounds when they "made the switch". You'll want to act on the advice of an expert in these cases!***

Tuesday, August 19, 2008

Call your electric company!

Quick piece of advice if you're heading home with your baby on oxygen--

Call your electric company.

Households that involve individuals requiring supplemental oxygen to breathe are on a priority list to receive servicing in the event of a power loss. Make sure you let them know so they're aware of your status before a power outage.

The importance of a great infant car seat...

It goes without saying that it is essential to invest the time in researching a good, quality, durable car seat for your baby. This is just good common sense. We definitely did our research when planning for the arrival of our first baby and we were very pleased with our Graco MetroLite infant seat/stroller system. However, the reality of it was, our son ended up weighing 24 1/2 lb at 6 months and his height was off the charts. At his FOUR month check up, his pediatrician told us that we needed to buy a new convertible car seat to accomodate his length (and, also perhaps, save our aching biceps!). My point is-- we probably could have shelled out less for the infant seat and still had an adequate ride for our baby.

Fast forward to the arrival of our baby daughter. Weighing in at only 1 lb 5 oz at birth and topping out at EIGHT pounds at the six month marker, this was a whole different story. She rode in that car seat until close to her second birthday, when she FINALLY hit 21 lbs.

With a very small baby, please remember that you will potentially be using that seat for a very long time. Sure, you can buy a different one, but why? Infant seats are incredibly portable and also offer a bit of a physical "barrier" protecting your infant from the germy (well-meaning) hands of strangers.

Invest in a great one and you'll be in good shape for the long haul.
For more great tools and ideas, go visit FishMama's Toolin' Up Tuesday!

Monday, August 18, 2008

Stop the inductions!

Ok, I'm not really on a mission to end all inductions, but I really do feel that it's gotten out of hand. I don't mean to offend any of you 41+ week pregnant ladies out there but, for the rest of you, please just remember-- babies DO eventually come out. I'm sick to death of these "37 week scheduled inductions". Who decides this is a good idea? Who can prove that all these babies are truly "full-term". Why are we taking chances?

For convenience? -- Quite honestly, I think "it fits my schedule" or "my doctor is going on vacation" are kind of weak reasons. Just my opinion.

For comfort? -- Sometimes, doctors tell us the baby seems "big!", "huge!", "ginormous!" Too many times lately, I've seen women induced at 37 weeks only to give birth to 7-pounders. Oh, yes. Huge. I know some will argue with me and I'm open to discussion... but I do not really believe that doctors (or ultrasound techs) can make very sound predictions on size. They told me my 8-pounder wouldn't be much more than 6...

Or, and this is what I really think is the issue, to avoid c-sections? -- C-sections are on the rise. No doubt about it. And that makes me really sad, not because c-sections are bad things, but because so many of them seem to be unnecessary. We live in a litigious society and doctors are scared, for one thing. Some women also have the misguided idea that a c-section is easier (having done it both ways, I would say without hesitation that my c-section recovery was 100 times more difficult...) I really think a lot of doctors are scheduling inductions while babies are smaller to avoid some of the c-sections. And, while I'd be happy to see the c-section rate go down, I'm not sure this is the solution...

Maybe it's just me.

Maybe it's because I carried one baby 41 weeks and the other barely 24. I can tell you which is easier...

But I say...

Let those babies cook!

That's my mantra.

"My story..." Monday, part 3

From the journal we kept in the early days following our daughter's early birth...


SUNDAY, JANUARY 08, 2006 01:30 PM, CST
well, after a bit of a rough day yesterday***, C is doing great today. she was having some big breathing problems yesterday and her blood pressure was falling. she also was having urine output problems, which made everyone worry about her kidneys. but, by last night, her respiration was wonderful, her diapers were VERY wet, and her blood pressure was well under control with the help of a little medicine. the doctor and nurse practitioner are amazed by her quick turn-around and we are once again inspired by the strength of our tiny little girl. she's having a very good day today and is being weaned off of her bp meds. they think they may even be able to get her back to her conventional ventilator again in a day or two. we'll see... whatever she needs. she's using her pink and silver blanket that i crocheted for her, so that's nice to see... oh! and she's working SO hard at opening her eyes, we think we'll see them anyday now!

TUESDAY, JANUARY 10, 2006 09:59 AM, CST
Miss C is doing fine, still having her ups and downs throughout the day while fighting her infections. The nurses and doctors are doing a wonderful job of monitoring her and keeping her settings where she needs them. The echo of her heart came back clean, so that is great news and we were told that she has now opened one of her eyes. We are grateful for all the wonderful people who have shown their support and continue to pray for our special little girl.

***A quick clarification here... this is an example of my ever-optimistic spirit during these early days. "a bit of a rough day" actually translates to "five doctors and residents were pretty convinced she was going to die yesterday". In truth, that was the very, very worst day of our entire hospital experience.***

More to come next Monday...

Friday, August 15, 2008

Not Superwoman

There are a few things I heard over and over again during the months following my micropreemie's birth. Truthfully, I still hear them on an almost monthly basis. Here they are:

1) I don't know how you handled having your baby in the hospital for 4 months...

2) I don't know how you lived in ONE room all that time...

3) I don't know how you threaded a tube through your tiny baby's nose down into her stomach every time you went to feed her...

4) I don't know how you pumped for SO long...

5) I don't know how you carted a toddler, an infant, and an oxygen tank to the grocery store...

All of these are ALWAYS followed by... "I couldn't."


I'm here to tell you that you could. And you would. Because there's not really a choice. No one asks a preemie parent if this is what he/she wants to do. Clearly, these are not all ideal scenarios. But you know what? You do it. You learn how to do things you never imagined you would have to. To tell you the truth, I wish I didn't know how to use a stethoscope to check tube placement at one in the morning. I wish my brain did not still insist of converting things to the metric system ("One teaspoon of Tylenol? Oh, you mean like 5 mL?"). I wish I had no idea what "She's on an eighth of a liter until she passes a sleep study" even meant. But I do. And you would too.

I'm just Mom. I'm a preemie mom. I'll even go so far as to say I'm a good preemie mom.

But I'm not Super Mom.

Eating on a Budget with a Loved One in the Hospital

When your baby's in the NICU, you have more important things to worry about than a budget. Micropreemies have exceedingly long hospital stays (3 months +) and, to complicate matters, odds are fairly good that you're not super close to home. There are only so many Level III NICU's in the country, so you may be several hours from your own kitchen. Here are just a few tips to keep in mind. While this is information I gleaned from my micropreemie experience, most of it could be applied to anyone coping with having a loved one hospitalized...

1. If you're far from home and it's your child who's hospitalized, see if there's a Ronald McDonald House with room for you. These Houses are amazing places. If you are so blessed, take advantage of all the meals that are available to you. When we stayed there, at least four dinners and two breakfasts a week were provided by different churches, schools, clubs, businesses, or families who stepped up to help. This was hearty, healthy, hot food-- the kind you need to fuel you when you're on an emotional roller coaster.

2. Find out if there's a kitchen available to you. On nights when we weren't fortunate enough to have someone bring in a hot meal, I cooked our meals in the kitchen at the RMH. Had we not been blessed to have a room at the House, we would have used to family kitchen at the hospital which was always stocked with basics like flour, canned vegetables, spices, milk, etc.

3. Talk to a social worker. In some cases, meal vouchers are available. Some hospitals also offer special programs- the hospital where our daughter stayed provided free breakfast, lunch, and dinner DELIVERED to nursing mothers who did not want to leave their babies' bedsides. I simply called down to the cafeteria and a volunteer would inform me when my meal had arrived. If my husband wanted to eat with me, there was a nominal fee that was far less than what he would have had to pay for fast food (e.g. eggs, bacon, toast, fruit, and coffee for two dollars).

4. Accept any and all offers of help. Do not be afraid to tell friends and family what you REALLY need. If what you need is for them to deliver a bag of sandwiches and bottled water, speak up. Most people truly want to be helpful and don't know the best way.

5. And finally, give back. This is not really relevant so much while you're contending with the extended hospitalization, but I urge you to find ways to give back once you're safely at home. Our family makes every effort to provide food whenever there's a cry for help. We try very hard to stop by the NICU and network with families who are struggling to provide them with resources. I have a current, updated list of what our local RMH desperately needs tacked to my refrigerator and a box always in progress to deliver the next time we're down there. I'm anxious to organize a dinner at the RMH (though I haven't done so yet).

Above all, hang in there. I would be remiss in not telling you that we, despite being known for our strong handle on finances, busted our budget during that stay. We racked up credit card debt and, in the end, had to rely on some savings to dig us out. It didn't devastate us. We recovered pretty quickly. I do believe that this type of situation is evidence for why having emergency funds is important. But, in the meantime, take care of yourself. Take care of your baby. And just hold on as best you can.

Thursday, August 14, 2008

Free Membership Week Begins NOW at!!!


Great news from Angie at Baby Cheapskate! Up through Wed, Aug 20th, you can receive FREE lifetime membership at any of 25 local Freepeats groups!

While certainly not limited to the needs of preemie parents, Freepeats is a GREAT place to look for specialty formula, outgrown teeny-tiny diapers, and preemie clothes! Because not all of us who HAVE a preemie necessarily will have a friend/neighbor who also has one, this is a great network in which to "pass it on"!

Go here for more information, details, and links! Thanks, Angie!

What a preemie mom is NOT...

Here are three more things I wish more people knew. Please know that I absolutely realize that sometimes these stereotypes DO apply to the mothers of premature babies... but it is so essential that people know that oftentimes, they do not. I have met (in person or cyberspace) so many amazing, devoted, strong, committed, healthy moms of preemies babies.

And so, in no particular order, here are three things that preemie moms are NOT (necessarily...)-

1. Young, uneducated, and without proper prenatal care-- I can tell you that I found out about my pregnancy early on, was careful with my diet and exercise, attended every prenatal appointment... I'm also a college graduate who had previously carried a baby full-term. Didn't stop me from going into labor at 23 weeks 4 days...

2. Addicted to drugs +/or alcohol-- Not only is it true that most preemie moms are NOT addicts, but some addicts manage to have full-term babies. There is no reason to assume that a premature baby is the by-product of substance abuse.

3. Medically "flawed" or biologically destined to have trouble carrying children full-term. Sometimes it's just a mystery. Sometimes they can't even begin to guess why it happened. Sometimes it just... happens. Other times, the doctors figure out and are able to prevent future premature deliveries armed with that knowlege.

I think we all need to realize that there are so many "assumptions" that we all make about so many situations. I am as guilty of this as the next person. But the area in which I feel the most comfortable attempting to dispel the myths is regarding prematurity. I would love to hear from the rest of you-
What are three things you wish people knew/ three myths you'd like to dispel?

Wednesday, August 13, 2008

Speak up!

Here is a lesson that I believe is important for just about any parent, but I can about guarantee it's vital for a preemie parent-- speak up. Learn to ask lots of questions. Take notes if you need to. Do not assume that medical staff will remember and/or have record of every little detail about your child.

Here's a recent example of just what I'm talking about:

Yesterday, we took our former micro-preemie (now 2 1/2 yrs old!) to the hospital for eye surgery. We went to the same hospital where she stayed in the NICU. We were there for 3 1/2 months at the time. We've been back a LOT. We've been featured on the news for this hospital. We filmed a COMMERCIAL for this hospital. Suffice it to say, they know who we are.

Nonetheless, when the anesthesiogolist popped his head in her pre-op room, he was armed with Versed, a medication used often in children to create a kind of "amnesia" so the process of surgery is less traumatic. This is standard procedure. In most cases, it's a wise way to go-- it eliminates separation anxiety and reduces fear for these children. However, Mommy knew better in this case...

Way back in the day, when she was just itty-bitty, C had to have laser eye surgery. She was given Versed (by the same opthamologist's team) and had a reaction. By "reaction", I don't mean she got nauseous. I don't mean she had irritation. I mean she went into respiratory distress and had to be put back on a breathing machine. Yikes.

And so I spoke up. I retold the story and listened patiently to the anesthesiologist tell me why he felt such a reaction was unlikely to happen again. He may well be right. I didn't want to take the chance. I know my child. I know how tough she is. I asked that he attempt to put her to sleep without it-- I assured him that she separates well and can tolerate a LOT without "freaking out". He agreed to try it.

Five minutes later, her nurse popped her head back into the room, smiled, and said, "She went to sleep beautifully. Dr. N has already started the procedure."

No Versed needed.

You know your child. You love your child. You NEED to advocate. No one will judge you for making educated requests. Keep it polite, keep it informed, but speak on up! You have my support and prayers...

Monday, August 11, 2008

Hooray for (relatively) big babies!

We recently received news that some dear friends we made during our long stint in the NICU welcomed their second baby to their family! Since their first child (like ours) arrived four months early, the pregnancy was not without trepidation.

However, this baby hung in there for eight months. While I hear people fear and despair over a delivery at 35-36 weeks all the time, after giving birth at 24 weeks, we'll take it!!!

Huge, huge congrats to the H. family on their beautiful new son.

"My story..." Monday, part 2

From the journal we kept shortly after our daughter entered the world four months early...

they seem to have determined that C has a bacterial infection which they continue to treat. she's stable and doing o.k. it's just a wait and see game now. she'll have her 2nd head ultrasound today to make sure she has no intercranial bleeding and they also have to do a spinal tap to ensure there is no infection in her spine. i have been assured this is actually an easy process with a little baby. keep the prayers coming anyway, please! her weight is at 590 grams, which is pretty much what we expected, so that's ok. hopefully, she'll resume breast milk feeds tomorrow...

FRIDAY, JANUARY 06, 2006 08:18 AM, CST
C. had a bit of a rough day yesterday. The doctors found that she also has pneumonia, so they changed her breathing equipment from a ventilator to an oscillator to help keep her lungs wide open. She seems to have stabilized now and can focus on letting the antibiotics work. She's staying strong and still gets mad when the doctor's bother her, which is a great sign.

FRIDAY, JANUARY 06, 2006 12:29 PM, CST
well, our feisty little c. had to be sedated today so they could work on her. it looks like the blood infection is not clearing up as quickly as we all would have liked. so, they are planning to run some more tests this afternoon to 1) rule out any infectious absesses inside her and 2) better isolate which bacteria is causing the problem. on a very positive note, however, her lungs look better and they were able to move her back to the classic ventilator. we'll see how it goes. she may well have to go back to the oscillator, but for now she's hanging in there! she's a tough little cookie...


Thanks for reading! As you can see... there are lots of ups and downs for the family of a micropreemie. Lots more to come...

Tuesday, August 5, 2008

Storing Baby Cereals

I touched a little bit last week on some options for thickening liquids safely to make them easier for some preemies to swallow.

If your baby has swallowing issues, you'll likely thicken milk or formula with baby cereal. It's relatively inexpensive, accessible, and easily digested. You'll go through a LOT of it.

I found it a hassle to try to pour from those boxes into a tablespoon to measure effectively.

I ended up transferring the cereal into a clean, dry, empty powdered creamer container. The opening was perfect for pouring accurately and it was sturdy enough to toss in a diaper bag when we were on the move.

For more Kitchen Tips, check out Tammy's Recipes.

Monday, August 4, 2008

"My story..." Monday, part 1

I really don't want this blog to be too incredibly personal. The people who need to know the ins and outs of my life, I believe, already do...

That being said, I think it might be beneficial to know some details of our story in order to grasp how this all began. So, at least for a few weeks, I'll be sharing some journal entries every Monday that I wrote through the early weeks of my daughter's life. And so begins the roller coaster...

"FRIDAY, DECEMBER 30, 2005 07:58 PM, CST
Tomorrow, C. will be one week old! She is doing very well so far. After losing some weight, she just began gaining a little back yesterday. We are so encouraged by this! The fact that she can now tolerate breast milk in addition to her IV's will certainly help her get a little size! She is just under 1 lb 5 oz now. Her doctor feels that she can likely go off her ventilator in the next day or two and move on to a lesser degree of breathing assistance through a machine called a c-pap. Her first head ultrasound looked really good and revealed no ventricular bleeding. We'll have a follow-up ultrasound on Wednesday. We feel very blessed to be here at Riley. Thank you so much to all of you who have kept our daughter in your prayers... it means the world to us and makes all the difference."

SUNDAY, JANUARY 01, 2006 12:26 PM, CST
Happy New Year! Yesterday, C. was one week old! Her Bama arrived to help care for A. He is doing great and managed to get two teeth in the time he was away from us! Unfortunately, C. lost some weight between Friday and Saturday, but she gained a little back last night. This is a great thing since she needs to be bigger than 1 lb 4 oz in order to try breathing without the ventilator... She is doing wonderfully with her feedings though and is digesting really well. They may be able to increase the amount of breast milk she has at each feeding soon and that, too, would help her gain some weight! While she IS tiny, our C. is beautiful with long thin fingers and black hair. Yesterday, her nurse put an itty bitty lavender bow in her hair. We are so inspired by her strength and courage and are so very lucky to have our two precious 2005 babies! Happy 2006, everyone! I'll update as soon as I know more.

TUESDAY, JANUARY 03, 2006 02:41 PM, CST
well, today is one of those down days on the preemie roller coaster... little c. seems to be sick and they're not sure if it's pneumonia or a blood infection. this is par for the course for preemies and they are treating her with some strong antibiotics and working hard to make it easier for her to breathe and relax. she's been temporarily taken off of breast milk to allow her whole little system to relax. it's been recommended to us that we place our hands very gently on her-- that this is calming. we're trying to stay optimistic and are just glad she is in very capable hands. thank you all for your continuing prayers...


More to come...