Wednesday, July 30, 2008

How to Help the Parent of a Preemie

Welcome back to "Three Things You Should Know" Thursday!

Today I'd like to share with you three great ways you can be a blessing to new parents of a micropreemie. Let's be frank here... giving birth to a baby 14+ weeks early is nothing like a healthy, full-term delivery. And sometimes it's tough to know just what to say/do. So, in the event that you're not the parent of this new little blessing, but want to do something to help, here are some suggestions:

1. If there are older siblings to the new baby, offer to babysit. Often these sibling are not even allowed at the hospital (due to the risk of germs and infections) and it can be a huge point of stress for a parent to try to arrange care for the older child so that they can see their baby. It is a hideous feeling to feel torn between your children and feel like you are failing any of them.

2. Offer to take over a share of "communications". Write thank you notes for the parents. Make phone calls or send email updates for them. There will likely be many people who want to hear about the baby, but it can be very difficult to take the time to keep everyone informed. Offer to pray and also to solicit more prayers for the child. It brought me endless comfort to know that there were congregations/parishes all over the country praying for my itty bitty girl...

3. Lastly, but in my humble opinion, most importantly... acknowledge the birth of their baby. I know that people worry that these tiny babies might not survive. And some of them won't. People worry about buying gifts or sending cards that might serve as "painful reminders". The truth is this... losing a child at any point is painful. It's not "reminders" that make it painful. But when people don't even acknowlege the birth of your baby, it's heart-wrenching. Early or not, your bundle of joy is here in the world. It's cause for celebration (though perhaps not without some trepidation). So DO send a card. Let them share their fears, but also let them share their joy! When I look back at the journal I kept during those early days, what always strikes me is my utter delight in my new baby daughter. Never mind the terror, I was in love with my child. Just like any other parent should be. My little girl is 2 1/2 and it still hurts me how few people celebrated her birth. At the same time, it brings tears of happiness to my eyes to recall the custom-made teeny-tiny white eyelet dress my mother-in-law bought her. Or the beautiful embroidered blanket my mother found for her isolette in the hospital. Or the sweetly encouraging card my best friend sent to me immediately upon hearing the news. Be part of that camp. These parents need all the cheerleaders they can get!

Thanks so much for reading this! The fact that you read it shows that you care, and that's the most important thing!

Tuesday, July 29, 2008

Another option for swallowing difficulties...

The very elderly and the very premature often share a similar medical issue-- difficulty swallowing. When the swallowing mechanism is weak and doesn't properly direct the liquid, some of it can be aspirated into the lungs. If the fluid is not efficiently coughed out (as is the natural reflex in a strong, healthy individual), it can remain in the lungs and ultimately lead to pneumonia, a potentially devastating condition for those already in a weakened state.

Because of this, preemies' drinks are oftened thickened for many months, or even years. There are many ways to do this.

Very few doctors will recommend that you give your preemie water... preemies (especially micropreemies) are so very tiny that every little bit they can fit in their tummies counts. Every little thing they consume should have calories! So I will not address thickening water in this post...

Milk is the most easily thickened. This can be done with baby cereal (oatmeal or rice) or- once the baby passes the nine month mark- with yogurt.

Most babies don't "need" juice. Our little girl did. All that cereal that's used to thicken milk can constipate little tummies. Of course, we COULD have put her on a prescription laxative... I preferred to just give her 4 oz of apple or pear juice each day. Juice is most often thickened with a "thickening agent". I am familar with two such agents- Thick-It (which you can buy at most drugstores) and Simply Thick (which is available online). Thick-It does what it says and it just keeps getting thicker and thicker the longer it sits. Simply Thick is a gel that thickens the juice to a certain consistency (honey, nectar, or pudding) and then it stays that way. We liked Simply Thick. It worked well for us...

However, I was a little concerned about exactly WHAT was making it thick. What were we putting in her tiny tummy? Also, it gets pricey.

Another option for thickening juice is fruit puree. This is a more cost-effective, healthier way to go about it. You can use baby food, for simplicity's sake, or you can puree your own. Once I had a good idea of what "nectar" consistency looked like, I found it simple to replicate this with pureed fruit. I froze ice cube trays with puree and mixed up batches as needed. Super simple. Healthier. Thriftier. After over 750K in hospital bills, you need all the help you can get.

For more kitchen tips, please visit Tammy's Recipes!

Monday, July 28, 2008

Cherished Life

"In a 1979 decision in the case of Colautti v. Franklin, the
supreme Court ruled that the exact moment of viability for an infant cannot be
determined by law, but must be left to the judgement of the attending
physician. Therefore, it is certainly possible for a woman to be in one of
the hospital's operating rooms for an abortion of her 24-week-old fetus, while
in the next room, doctors are striving to sustain the life of an infant born
prematurely at 24 weeks gestation."

-Frank P. Manginello, M. D. Your Premature Baby

This quote never fails to sicken me. It comes from a book that I was given when my 23w6d baby girl was in the NICU. The nurses provide all the preemie parents with a copy. It is a well-written, invaluable resource as you take on challenge after challenge... sickness, breathing problems, apnea, the list goes on and on...

But that line stuck with me.

The idea that these children (for they are no less) could tossed away like so much garbage is appalling. If you haven't already, I challenge you to research your state's individual abortion laws. You may be opposed to abortion altogether (as I, admittedly, am and always have been...), but even if you're not, I urge you to challenge the idea of 2nd term (and beyond!) terminations.

**That's my baby girl at one week old in the photo above! And me, in my absolute delight to hold her in my hands for the very first time...**

Friday, July 25, 2008

Saving money on formula (when nursing isn't an option...)

It goes without saying- and I doubt there's a single one of you who hasn't heard it a million times- nursing is best. That statement is doubly or even "triply" true for micropreemies. You see, one of the many benefits of breast milk is that it passes on the mother's antibodies to the baby. This is great for any infant. But consider this-- full-term babies receive a healthy dose of their mama's antibodies throughout the third trimester. Not as much as they'll receive if they're also breastfed, but, still, a good start! Even if formula-fed, these babies have some natural protection. Micropreemies don't even HAVE a third trimester. My daughter was born just shy of 24 weeks. This means these babies do not receive any of those great last trimester antibodies while inutero.

However, nursing a teeny tiny NICU baby is not without complications. In the case of these babies, "nursing" really translates to "pumping". And pumping. And pumping. We were fortunate and pumping went well for me and I was able to provide breastmilk for the first seven months. It doesn't always work that way, especially if the reason for the premature birth had to do with a problem with the mother's health.

So, let's just lay it on the line... some babies are going to be formula-fed. That's just the way it is. And these babies can certainly thrive. These children are without a doubt loved. There's simply no reason to be critical...

And there's also no reason to drive yourself into the poor-house paying for expensive specialty formula.

It seems likely lately I've read about so many babies needing specialty formula. Being mom to a preemie who was on Neosure Advance for over a year and NICU neighbor to several babies with allergies and sensitivities, I know how expensive this stuff can get. Furthermore, it certainly doesn't help that they only sell it in those rinky-dink 12 or 13 oz cans. If you don't qualify for WIC's income guidelines, but are not exactly rolling in it either, here are a few things you may want to try in order to ease the expense of specialty formula:

1) Don't be afraid to ask doctors and/or nurses for formula; my preemie would periodically receive a "care package" in the mail from some of our beloved NICU nurses. Each of those packages was probably worth close to $100.

2) While you're at it, ask about formula checks. Our NICU had pads of checks for NeoSure like some pediatrician's offices have for more traditional formulations.

3) Check with your insurance company. In some cases, the insurance company will reimburse the difference between the cost of the specialty formula vs. regular formula. You may still have to cough up the "retail value" of name brand formula, but at least you wouldn't have to shell out $25 or so a can... this could mean saving receipts, but it would still be worth it!

4) Network with parents of children with similar issues. Shortly after my preemie turned one year old (corrected), I was at a family support snack hour for NICU parents and encountered a family whose preemie was just being discharged. I was able to hand off 12 cans of Neosure to them that we would no longer need.

5) Be clear and specific and ask your pediatrician when you can try something else. Obviously, the health of our children is the most important thing... that being said, oftentimes your doctor may not think to suggest you could try switching to something else until YOU bring it up. Some babies can transition to a more "typical" formulation or even some type of milk with a vitamin supplement.

Maybe, just maybe, you can save a little money with one of those. I hope so!
Check out Biblical Womanhood for more frugal ideas!

Tuesday, July 22, 2008

"How Preemie Moms Are Chosen"

*~How Preemie Moms Are Chosen~*~(Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting hisinstruments for propagation with great care and deliberation.

As heobserves, he instructs his angels to take notes in a giant ledger.

'Armstrong, Beth, son. Patron Saint, Matthew.Forrest, Marjorie, daughter. Patron Saint, Celia.Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used toprofanity.'

Finally, he passes a name to an angel and smiles.'Give her a preemie.'

The angel is curious. 'Why this one, God?She's so happy.'

'Exactly,' smiles God.'Could I give a premature baby a mother who knows no laughter? Thatwould be cruel.'

'But does she have the patience?' asks the angel.

'I don't want her to have too much patience, or she'll drown in a seaof self-pity and despair.Once the shock and resentment wear off, she'll handle it.I watched her today. She has that sense of self and independence sorare and so necessary in a mother.You see, the child I'm going to give her has a world of its own.She has to make it live in her world, and that's not going to be easy.'

'But Lord, I don't think she even believes in you.'

God smiles. 'No matter, I can fix that. This one is perfect She hasjust the right amount of selfishness.'

The angel gasps, 'Selfishness?! Is that a virtue?'

God nods. 'If she can't separate herself from the child occasionally,she will never survive.Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied.She will never take for granted a spoken word.She will never consider a step ordinary.When her child says momma for the first time,she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.She will never be alone.I will be at her side every minute of every day of her lifebecause she is doing my work as surely as she is here by my side.'

'And what about her Patron Saint?' asks the angel, his pen poised inthe air.

God smiles. 'A mirror will suffice.'


Monday, July 21, 2008

Self-education for the purpose of advocation...

We have the honor of speaking on behalf of our local children's hospital this evening. I am so eager to share our story and perhaps to inspire some of those who are able to donate to such a wonderful place. Were it not for the state-of-the-art facilities caring for our daughter, she likely would not have made it.

We encourage you to take a few moments and learn about the children's hospitals in your area. Learn what they excel at. Find out what departments are hurting. Educate yourself and be inspired in the process! This will enable you to make informed decisions the next time a cashier asks if you'd like to make a donation.

If you are a parent, currently enduring the micro-preemie roller coaster, learn what the strengths and weaknesses of your particular hospital are. Do not be afraid to ask. We were fortunate to have our daughter in one of the top three NICU's in the country. However, when it came time to have her eye surgery, they were very forthcoming with the fact that we should travel to get optimal treatment. And so we made the 3-hr trip to Chicago to ensure the best care. Many a baby has survived because he or she was transported to a different, more capable hospital for whatever the individual issue may be. Advocate. Challenge. Educate yourself.

Saturday, July 19, 2008

Envying those giant 3-lb. babies...

... and also those hugely pregnant ladies.

Micropreemies are babies born at LESS than 26 weeks gestational age. These are TINY babies, usually weighing less than 1 lb 11 oz. While definitely a part of the preemie population, these babies are different from other preemies in so many ways.As the parent of a micropreemie, it is sometimes hard to have your teeny tiny little child lumped in with the much larger 32-37 week population. It may not feel relevant when another parent wants to share the story of their son or daughter who was born a month early. It is equally difficult to listen to women late in a pregnancy complain and state how much they're ready for it to be over.All of this is a lesson in patience. And a reminder that we all need to think before we volunteer or opinions and stories to those who may be in a sensitive place.

Blessed summer babies!

This is a great time of year for babies to be born! While I welcomed both of mine in the winter months, the summer is a healthier time for the babies requiring critical care. We are definitively out of RSV season and older siblings and cousins aren't dragging germs home from school. There are enough struggles with a baby born incredibly early without constant germ and infection worries. So enjoy these months of (relative) good health. You can never be too vigilant when it comes to your micro-preemie, but at least you can be thankful to be RSV-free.

Friday, July 18, 2008

My mission...

It has become a mission for me to share information and support with other families facing the ups and downs of welcoming a micropreemie into their lives. I am hoping to establish this blog as a launching point to get some resources and information out there. My ultimate goal is to create an organized, informative site for parents and loved ones to visit to find answers and understanding regarding so many challenges and feelings that are unique to the micropreemie experience!