Archive for the ‘NICU’ Category

Today, My Heart Aches

Today marks the second anniversary of Madeline Alice Spohr’s birth.

Today I weep a little more than usual for my friends, Heather and Mike.

Today I weep for the loss of my son’s friend, Maddie.

titiandmaddie2

Ethan and Maddie

Today I reflect on how extremely lucky I am to have had a second birthday with my own preemie.

Snoozing and sunbathing in the incubator

Today I hope and pray for Baby Binky Spohr, growing steadily inside of Mama Spohr, to be born healthy, happy, and not too early.

Today I ask you to give what you can to the Friends of Maddie Foundation — for Maddie, for Ethan, for Aidan, for all of us parents of preemies who spent far too long in the NICU, for all the babies who fight daily to survive because they were born too soon.

Under the lights in his incubator

November is Prematurity Awareness Month. Please join me in donating to the Friends of Maddie Foundation TODAY to celebrate Miss Maddie Moo’s life and the success of my own preemie baby.

Five days old - precious time out of the incubator

My big boy now ~ nearly 3 years old

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Heather, Mike & Maddie — My Friends

I first met Heather at BlogHer ‘08, during the Macy’s party.

Casey said, “This is Heather from ‘The Spohrs Are Multiplying. If you aren’t reading her, YOU SHOULD.’

Well, okay then!

I interacted with Heather intermittently on Twitter after BlogHer and knew that she was my kind of girl. The Cracker kind.

When we met at Blissdom, it was clear that we would be friends.

We both had preemies, we both liked to drink and cuss, we both just don’t give a fuck — a perfect union!

Our relationship was solidified on the plane ride home from Blissdom. I had to fly through LAX and Heather saved me a seat on the plane since I was the crackah-ass-crackah that got on the plane damn near close to LAST.

Heather and I talked BlogHer ‘09 and we cried — YES, we CRIED — about our darling preemie babies. On the gottdamn plane. This is when we bonded. For life.

Three weeks ago, Titi and I went down to Los Angeles to stay with the Spohrs for the 5 Minutes for Mom Ultimate Blog Party In Real Life (featuring Chris Mann) and we got to meet the illuminating spirit that was Maddie. (THREE FUCKING WEEKS AGO, PEOPLE. I was holding and loving and cuddling that little girl.)

Wrapped up in Mike’s arms when we walked through the door, Maddie and her infectious smile was the welcome mat for the Spohr household.

Titi and Maddie took to each other right away; acting almost like brother and sister.

When it was time for us to pack up and leave, my son didn’t want to go. Neither did I. Some people you just *connect* with. Some people are your Crackers. The Spohrs are my Crackers.

*******

Every time I open the computer, I am bombarded with purple and the sweet face of Miss Maddie Moo. Titi sees his friend and talks about her.
I don’t know if it’s a sick compulsion or what, but I asked him, “Do you want to hang out with Mama H and Maddie again?” Titi said, “YEAH.”

“Night night?” he asked.

I said, “you want to spend the night at Mama H’s house again?”

“YEAH!!”

I did not have the heart to say a damn thing.

*******

I am completely heartbroken and have been at a loss for words about this devastating tragedy. Tonight, I sat down to write because so many others have written such unbelievable tributes. I can do at least this much.

Tomorrow I will stand next to Heather and Mike, wishing that instead we were at their home, standing and playing with their dear daughter, Madeline, and not in a Church at Forest Lawn.

Tomorrow I will be strong for my friends. And even though I WILL cry, I will remain strong enough to hold their hands, and offer my shoulder, because I am the one with my precious preemie still alive. And they are not. And it crushes me. The weight of it all.

Our hopes and dreams and plans for our children to grow up as friends.
titiandmaddie2
Dashed.

*******

Please join me tomorrow at 2:30pm Pacific time for a wonderful celebration of Madeline Alice Spohr’s LIFE. Maddie deserves a celebration. Maddie would want us to smile when thinking of her.

I’ll be the one in the purple shirt.

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Thankful, Turkey Day Edition

This year, I am thankful for my life.

I am thankful certain things, like Little Man’s birth, went better than they could have gone.

I am thankful my baby made it thirty-two weeks, one day, two hours and twelve minutes in the womb, and not any less.

I am thankful my baby got the care he needed for twenty eight days, and not any more (or less!).

I am SO thankful for our health insurance coverage.

I am thankful I was able to provide my own milk for my baby while he received his care.

I am thankful my baby and I were able to breastfeed after his special start. Not all babies are so lucky.

I am thankful my baby prefers to take his milk from me, and that he is able to do so.

I am thankful that my baby is now a healthy and happy Little Man.

I am thankful to be surrounded by family today.

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Prematurity. It’s No Joke.


This article made me cry big, globby tears yesterday. It is truly shocking and sad that in our rich, developed nation we have a major metropolitan area such as Memphis with an infant death rate of 15 per 1,000 births.

The majority of these deaths are due to prematurity and low birth weight.

This paragraph, at the beginning of the article, really hit home for me:

It takes a while for something much sadder to occur to you: In a room full of newborns, dozens of them, there is no crying. The sound of beeping heart monitors, the rustle and murmur of observing doctors, but no crying.

“They’re too small and too sick to cry,” explains a passing nurse.

When Little Man was in the NICU, he rarely ever cried. One nurse called him a “really mellow fellow.”

Preemies just don’t have the energy to cry. They need to save everything they’ve got to help build their bodies stronger, repair any damage that was caused by coming out of the oven under cooked, and gain weight.

We weren’t convinced that our son was just super mellow. We had heard from friends with preemie twins to enjoy the pre-40 weeks stage, since all they do is sleep. Once the preemies hit full term (their due date), all bets are off.

That was the case with our Little Man. Once we hit the end of February, it was all sirens blazing. Hungry? Tired? Wet diaper? How about we SCREAM to get our needs met? Sounds good, right?

It was still shocking to see such an immediate change in our son. We knew it was possible that he would become “more alive” but seeing is believing. It was great to know that he was getting stronger, and bigger by the day.

When Little Man left the hospital at four weeks old (just past 36 weeks adjusted age), he weighed six pounds six ounces. The next day at the pediatrician, after his first full day of on-demand feeding, he had gained three ounces. He would continue to gain over an ounce a day throughout his fourth month, despite having acid reflux.

You can imagine that there was a lot of nursing and a lot of spitting up going on.

Articles like this one make me feel so lucky that we came out of our premature birth and NICU stay relatively unscathed. It is a reminder of how much still needs to be done to ensure every baby gets a fighting chance at life.

I wish that no other families would have to learn to ignore the constant beeps of heart and oxygen monitors. I wish that more babies could go home from the hospital with their parents. I wish more babies would be born healthy, and sometime after 37 weeks.

Until my wishes can become reality, please support the March of Dimes continue their fight against prematurity.

November is March of Dimes Prematurity Awareness Month.

Congratulations to Crackers #6, 7 & 8, our NICU roommates, for becoming one of the March of Dimes’s Ambassador Families for 2008. #8 (the Big Guy) was born at 27 weeks gestation. He is truly an amazing baby, with truly amazing and wonderful parents.

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Ten Months In

Dear Little Man,

Just two days ago you turned ten months old. I can’t believe how quickly you have grown, and how quickly our time together as Mama and (infant) baby has gone by. It seems like just yesterday that you looked like this:

Little Man, almost four weeks, still in the NICU
(Both pics)
Now, you look like this:

In the last few weeks, you have blossomed into a little boy right before my eyes! You have had an explosion of progress in your finger food eating and language abilities.

Last month, I was afraid to give you Cheerios. Now you eat black beans and kernels of corn whole. You eat chopped up chicken burger and tofu. Even well steamed carrots are not off limits. Your pincer grasp is becoming more refined by the day. (I know last month I said that you HATED corn and tofu, but apparently I was just giving you the wrong kind — pureed corn and silken tofu? Blech. Whole corn and baked Terriyaki tofu? A-okay!)

In the beginning of the month, you would put one piece of food at a time in your mouth. Now you are practicing the chipmunk look and storing food in your cheeks to chew later. This is mostly because your motor skills have improved enough for you to get copious amounts of food to your mouth at once rather than scant amounts.

In just the last week, your language capabilities have begun to catch up to the BigGuy’s. I think you got jealous of him saying, “Yeah! Yeah! Yeah!” over and over again. You had to do something to keep up. So now you are saying, “Da da da da, DA!” It’s the most wonderful thing for your father to hear. I love it too. I know you’ll get Mama soon.

In the morning, instead of just crying out for us to come get you, you practice your babbling and shrieks of delight for a solid ten minutes — or more! — if we let you.

Another funny thing you have been doing is at meal time. While you are in your highchair, you will start to lean back and lift your chin to the sky, with an exaggerated smile. You seem to be doing this purely for our benefit. It’s almost as if you want to prove what a silly little monkey you are to us. You get this squinty eyed grin going, coupled with a look of self-satisfaction that is absolutely priceless. We can’t help but laugh at you.

You are also learning what it means to drop things from your highchair. You have two reasons to drop things right now: 1) for the effect of the drop — hearing the thud and watching mommy (hopefully) pick up and return what you dropped, and 2) to feed Sasha.

You seem genuinely pleased when you feed Sasha. Sasha now loves chopped up tofu and whole kernels of corn, too. The black beans? Not so much. Unfortunately, I have to clean those up.

We’ve also been on project fatten up around here. I am feeding you an egg yolk custard once a day, and also stir coconut milk into your oatmeal in the morning. Your egg yolk custards consist of one egg yolk and two tablespoons of either coconut milk or chicken stock, cooked over low heat until, well, custardy. (Ok, sometimes I cheat and do it in the microwave, but it’s not nearly as smooth that way. The upside, though, is that it only takes a minute!) (You are enjoying the chicken stock ones best most recently.)

You are DEFINITELY getting heavier. The strange thing is that only your stomach and cheeks are getting bigger. You have quite the physique now. Daddy and I joke that you are “just the perfect specimen of manhood.” And then we laugh at you. Sorry, buddy. But you are INCREDIBLY cute. And SOOOO skinny in your arms and especially your legs. (See picture #4 above.)

Last month, we were ready (Daddy for the most part) to say that you were sitting up. Now you can sit for up to ten minutes at a time! You have really developed your ability to sit and appreciate things, or patience, or whatever you want to call it. You seem to be able to sit and survey the situation, rather than just dive right into it, in an effort to plan out your next best move.

Previously, you would just go for it. Screw what the next best move was — you wanted THAT toy RIGHT THERE and you wanted it NOW! Now you think, “mmm, MAYBE that toy, but MAYBE this toy. Let me see. Oh look! There’s the tractor! Let’s get that! No, wait! SASHA!! Yes, let’s get Sasha! That’ll be fun!”

Speaking of the CrackerDog, you and her have gotten even closer in the last month. She loves seeing you and wants to give you kisses. You love seeing her — you get a HUGE smile on your face and kick your legs — and want to explore her.

Unfortunately, your trust in Sasha has extended to ALL dogs, and while I love that you’re not AFRAID of dogs, I wish you would be more cautious. Most dogs don’t respond to tail, ear and muzzle pulling by just laying there and taking it. This is definitely a lesson we will have to work on in the future, because you think you can put your hands in any dog’s face, which is just not the case.

You like to put your hands all up in Mom and Dad’s faces, too. You don’t know the meaning of “gentle” yet, so it pretty much means we get gouged. Luckily for me, you’ve been biting WAY less, and I am SO thankful. You haven’t yet gouged any of your friends, mostly because of attentive mommies and daddies. You are a quick one, my love!

You still love your nursing and are only mildly interested in sippy/drinking cups. I’m beginning to worry that breast milk will be your only fluids for the foreseeable future. I can only hope you’ll take to the cup eventually soon.

As for those teeth I thought would be coming in, well, they haven’t. But they seem MUCH closer to the surface. You have four bulges, two on the bottom on either side of the ones you already have, and the two top front teeth. Looks like you got Momma’s slow teeth, for sure. I’m hoping, for both of us, that they come in quickly and as painlessly as possible.

You have also been super funny with your tongue lately. I’m not sure what you think you can do with it, but it seems to hold special powers for you. You are exploring all sides of your mouth and gums with your tongue. You stick your tongue out at us and laugh when we reciprocate.

You are just one funny little dude, my love. You continually amaze me with your progress and love for your family. I am really enjoying this stage you are at — not quite a baby, definitely not a toddler — completely adorable.

Best wishes to my long and lanky dude.

All my love,
Mama

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Profile of a Cracker: #6


LIKES: Golf, Guinness, Barbecuing, Beating my husband at Tiger Woods Golf ‘07
DISLIKES: Losing to my husband at Tiger Woods Golf ‘07, running out of beer
AWESOME RANDOM FACT: When told about “Crackerness,” asked if he could be Cracker #1

Cracker #6 is truly a special guy. Where others spell their name with an “I,” number 6 uses a “Y.” #6 is totally comfortable in his own skin (and his own Crackerness), something we should all aspire to.

We met #6 in the NICU, where our boys were roommates. #5 and #8 shared a room for two weeks, the longest we had ever roomed with anyone. #7 (#6’s wife) and I had been getting to know each other during the day. When our husbands came that night, #6 was ready to make some new friends. We found out that we lived fairly close to each other, and when I said that we didn’t have any friends in the area with babies, #6 said, “Well, you do now!”

Awesome. Just awesome. There weren’t that many couples like us in the NICU — on the younger side, able to have Mom at the hospital all day, having a “wimpy white boy” — and the one other couple that was like us (and had also been a roommate), wasn’t friendly at all. In one small gesture, #6 formed a bond that will last a lifetime.

It is a very tough experience to have your (first) baby in the hospital for weeks on end. It is an experience that is impossible to describe to someone else — the feelings, the worries, the setbacks — and to have friends who went through the same thing makes getting along in the world OUTSIDE of the hospital SO much easier.

Little Man was VERY lucky. He was born at 32 weeks and “only” spent four weeks in the hospital. #8 was born at 27 weeks and spent TEN AND A HALF WEEKS in the NICU. The strength and courage of #’s 6 & 7 truly amaze me to this day.

#8 came home from the hospital two and a half weeks after #5. Those early months home were made much more enjoyable by our friendship fostered by #6. We understood the limitations and “corrected age” expectations of our boys, and our complete germ-phobia from what we call “The Fear of The NICU.” So we were free to socialize with each other, when we were all too afraid to socialize with anyone else. Or the world in general.

#6 is the one who suggested we finally (GASP!) take our boys out in public for a ball game. He is also King of the Tailgate, coming fully prepared with BBQ, beers and chairs. He can make anyone feel welcome at his parties (tailgate or otherwise) with his open smile and friendly demeanor.

I haven’t fully been able to point out #6’s specific examples of Crackerness, in fact this profile has been a bit of a love fest, but rest assured, #6 is a TOTAL and COMPLETE Cracker. We like him that way. Thanks for joining the crew, #6.

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