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...


WEDNESDAY, JANUARY 04, 2006 10:45 AM, CST
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...

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

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.

"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...

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More to come...

And we're off...

We're off to Niagara Falls for a few days!

One thing I'll tell you... opinions vary GREATLY on this subject, but we have never let our daughter's extreme prematurity slow down our travel. We've gone places hauling oxygen, a naso-gastric feeding tube, even a hip-spika cast that covered more than half of her little body. Of course, we had far less significant breathing +/or digestion problems than some families face. So, as always, it's best to go with your doctor's recommendations.

Nevertheless, here we go again! There will be some new posts showing up even in my absence, so be sure to stop on back.

Easing the medical burden...

When you give birth to a preemie, the cost of the whole process doesn't usually sink in right away. There are tons of numbers flying through your brain (weights, statistical odds, ventilator settings, etc.), but hospital bill figures usually are not among them.

Eventually, though, it will either occur to you that this is going to cost a bundle or some kindly social worker will approach you to help you find the Medicaid office.

Since our hospital bills for our (relatively healthy) micropreemie topped three quarters of a million, I'll be the first to tell you to ABSOLUTELY apply for Medicaid. But if, like us, you don't quite qualify for that, I also urge you to pursue other state funded insurance programs for children with special needs. It was through one such program that we received supplemental insurance for our little girl.

Most, if not all, micropreemies require pretty extensive follow-up care. Having a secondary insurance company to pick up co-pays and prescription costs has proved invaluable to us. Perhaps even more valuable has been the fact that their customer service representatives are all from MY state and are familiar with children with ongoing special needs. We do not receive the same quality of responses from our big-box national insurance company through my husband's work.

Babies are precious... and priceless. Good insurance helps ease the burden of the healthcare price tag.

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!