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...

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.