stuck

We are stuck. The acid reflux on both babies is bad. Owen was on four bottles a day, but the reflux worsened, and they had to cut his bottle feedings to two. They switched his medicine, but we didn't see much change. They thickened his feedings with "Simply Thick" to help him keep the food in his stomach, but again, no change - except that he looked like he was drinking a Dairy Queen milkshake instead of breast milk. The reflux is traveling so far up his esophagus that it is getting stuck in his nose and making him have horrible congestion. Poor little guy snores like my dad after a few beers. They cut all of his bottles yesterday until he can breathe out of his nose better.

Last week for Elie was very good. She is holding steady at a setting of 1 on the regular nasal canula - a far cry from her days on the high-flow at 4.5. Unfortunately, her acid reflux has gotten so bad that she can hardly attempt her one bottle a day. Two sips, and she's coughing it up like a chicken bone. The reflux is definitely holding back her respiratory progress too, as she is requiring more oxygen to battle the burn of the acid. She is still on Zantac, but it's not managing her pain. We are hoping the doctors switch her to Prevacid, so that she can get the canula taken off and try room air for awhile.

I love moving forward. I love seeing progress, and knowing that we are on our way to better days. But, for now, we are just not moving. And I can't even put into words what it feels like - not good, not bad, just stuck.

bath time!

balloons

Since I went into pre-term labor in October, I have looked at post-pregnant women differently. Actually, I looked at them like gangsters trying to steal my eyeballs. I resented them - resented the fact that they got to take their babies home, and I was left to return to the hospital the next morning to see mine struggling.

I decided it was time to get over it. I sat outside the doors of Northside Hospital's Labor and Delivery Unit yesterday, and I made myself smile at three post-partum women. The first woman had a big, blue "It's a Boy!" balloon tied around the handlebars of her wheelchair. Her husband took a picture of her smiling and holding the baby. I imagined them putting the picture in their fancy, sticker-laden scrapbook right next to the photo taken a few days before and labeled - "Headed to the hospital!"

The second woman's husband drove up in an old maroon Corolla with a newly stuck on "Baby on Board" sign. Her husband was pushing a grey cart full of flowers, presents, and another blue "It's a Boy!" balloon. Yeaaahhh. I have a little boy, too.

The third woman smiled at every person that looked at her - including me. I didn't even roll my eyes as she passed (I've come a long way!). I just watched how happy she was, as she held on to this sweet, sleepy-eyed, tiny baby swaddled in a pink and yellow polka-dot blanket. I stared as her husband pushed her past me - a little girl. Yes, I have one of those, too.

I know Mike and I will get our time. I know one day we will say goodbye to our nurses and doctors, wires and monitors, and we will leave this place with our pride and strength intact. But, best of all, I know - one day - we will leave with Owen and Eliot. And I am going to take Mike down in a Gladiator-style death grip to get the chance to walk out the door of Northside's Labor and Delivery Unit with our twins in my arms. I want that moment and that memory. I even want those silly balloons.

We are now less than one month away from my 40-week due date - March 18th. This is the target date that the doctors are shooting for, the day we all hope the twins will be home by. Maybe before, maybe slightly after, but March finally feels close. I keep day-dreaming of it, hoping the time between now and then flies by. My arms will be full of bambinos, my face full of smiles; cameras will be taking pictures; we'll have the camcorder rolling . . . and Mike? He will be busy carrying my pink and blue balloons.

suck it! the sequel . . .

The doctors turned the flow down on Eliot's canula on Saturday night, again on Monday, and again - to 1.5 - on Tuesday morning. She handled all of the decreases in oxygen beautifully. Because her oxygen setting is so low now, the doctor wrote the order to start her on bottles ASAP.

I sat dumbfounded. "Wow. Are you sure she's ready? She just had her oxygen turned down."
He laughed, "We'll never know if she's ready if we don't try. Let's be bold."

They gave Eliot her first bottle on Tuesday morning. She had an appropriate first attempt - 5cc's (about 1 teaspoon). Then she sat back, exhausted from effort, and flashed a huge smile across her face - a big, gummy, bold smile.

no o2 for little o

Notice anything different about Owen?


Notice anything missing from his face?


Owen's nasal canula is gone!!! He is no longer in need of oxygen support. On Friday night, the nurse removed his canula, and we all watched as the little guy took his first "room air" breaths since he was born. No more hiding behind tubes; now that the canula is gone, you can really see his cheeks!

her time will come

Eliot was on the high flow canula with a setting of 2 before she got her infection. At that point, she was doing better than Owen. That was exactly one month ago, and she has not been the same since. On multiple occasions, the doctors have tried to wean her down from a high setting of 3.5, but she has always had a few severe drops in oxygen, and would inevitably be bumped back up on her flow within a few hours. The only way for her to progress to bottle feedings is to get her off the high flow and onto a regular nasal canula like her brother. The doctors kept telling us to have patience, that her time would come.

Last night, after two stable days, they decided to try again. Mike and I sat for three hours, and watched as Elie remained at this lower setting. Could it be? We called at midnight - still stable. We called at 3am - still good. We called at 6am - Elie was still at 2.5 and holding steady. Amazing. She might just be on her way to the big, bad bottle - finally.

Owen continues to do well, though his reflux is a little worse than his sister's. They have increased his bottles to four a day, but he has yet to complete all four due to spitting up or choking from reflux. We are hoping he will accomplish this in the next few days, as this is the only way to increase him to five. There is still talk of taking him off oxygen support in the next couple of days. What a step in the direction of home this would be!

One nurse said to me last week, "It must be so frustrating. Your twins are now 35 weeks. They should be so close to coming home, and now they are having to deal with bad cases of acid reflux."

"Are you kidding?" I replied. "We'll take a little indigestion over what we've been through in the last two months!"

We can deal with this. We are happy to deal with this - believe me.

G.I. O

A Real American Hero - G.I. O

G.I. O waving to his fans . . .

plotting his next mission . . .

snuggling with his grandma.

the greatest gift

Look what I got for Valentine's Day.

regress to progress

This past weekend was a Twilight Zone experience. The acid reflux was bad, and both Owen and Eliot were visibly hurting from it. The doctors started them on Zantac last Friday night, and we were waiting for it to take effect. In the meantime though, their breathing started to suffer, and both twins' A's and B's were dramatic and depressing. We had come so far to regress so much!

On Monday, however, I walked in to see two totally different babies. They were snuggling up to each other, smiling, and watching their mobile. You could tell instantly that they felt better. I bow to the gods - the makers of Zantac. They are good and wonderful people.

Owen is now up to three bottles a day and is gaining weight at a rapid-fire pace. This kid's cheeks are the size of grapefruits. He has been turned down to .5 litres on his nasal canula and is on room air. The doctor said she would probably consider taking him off oxygen support altogether in a few days. He is now 5 lbs., 12 oz. - a respectable "real baby" size, if I don't say so myself.

Eliot also continues to put on the ounces, but struggles a little more because she burns a lot of calories while working harder to breathe. She is still at 3.5 litres on the nasal canula, and does not appreciate being weaned from it. Because of her smaller weight (even one pound at this stage makes a huge difference), she has little reserve in her lungs. Any stretch, yawn, or hiccup, and her oxygen saturation levels go down. She is now 4 lbs., 10 oz. As her body gets bigger, so will her lungs, and this will undoubtedly help her breathing a great deal.

The twins have been together in the same crib for two weeks now. It will forever be an amazing sight, as I am still humbled by the days when they were tiny babies behind plastic walls - and in separate rooms, no less. Seeing them now makes my heart happy.

I know the sibling love may not last forever, but check out how much Owen enjoys snuggling with his sister. When I went to visit yesterday, he was sucking on her face. I don't think she's going to let you do that for long, little buddy.



Tap, tap, tap. Hey Eliot, you wanna snuggle?


You're kinda close, Owen.


Ewwwww! Did I just feel something wet? Were you sucking on my face?


I love to snuggle with you, Elie.


Alright, but just a few minutes longer . . .

team two early

These booties were made for walkin', and that's just what they'll do . . .

Mike and I are supporting the March of Dimes by walking in March for Babies! on April 26th in Centennial Park.

If you have been touched by the story of our twins, please consider making a donation to the March of Dimes in honor of Owen and Eliot.

The March of Dimes Prematurity Campaign is a multimillion dollar research, awareness and education campaign to help reduce premature births, birth defects, and other infant health problems. We are proud to walk in honor of babies across the country, as well as our own premature twins.

Please see the right sidebar banner for more information on donating to March for Babies. Thank you from Team Two Early!

thank you

I have a friend who I met in the sixth grade. We were the perfect combination: she was funny, and I loved to laugh. We grew up together, and most of my favorite childhood memories involve her in some way. Among other things that we did that got us into trouble, she and I struggled through many a math class together.

She read my blog post from Saturday, February 9th that said, "I hate A's and B's." And she replied, "I hate A's and B's too. That's why I always preferred C's and D's."

I sat back on my couch, and I laughed out loud. When our premature babies hit us out of nowhere, I thought I would not only lose my mind, but also my humor. This event was so serious; this journey so full of despair. But as Mike and I started our life in the NICU, we realized that the only way to keep our sanity would be to meet this challenge the same way we did other events in our life - genuine and optimistic.

From the beginning, our friends and family have consistently reminded us who we are (we have forgotten a few times, that's for sure). And while we can not lose sight of our reality, we also can not lose sight of ourselves in the process. We are grateful to all of you who have formed a circle around Mike, Owen, Eliot and me, providing us with a peaceful place where we feel restored by the love, support, faith, hope, and - of course - laughter of our family and friends.

A's and B's

I hate A's and B's. Apnea and Bradycardia.

Apnea = cessation of breathing
Bradycardia = slowing of heart rate

We are again dealing with apnea and bradys. We have been through this before with both of the twins, but thought they had outgrown it. Now that we have added a lot of food to their daily regimen, they are suffering from acid reflux - which adds to fatigue - which increases A's and B's. Put your left foot in, and your heart rate down . . .

Acid reflux occurs in premature babies because their digestive tracts aren't fully mature. Contents from the stomach back up into the esophagus, most likely because a valve in the stomach isn't fully sealed yet.

Obviously, it hurts and burns. The babies get upset, hold their breath, make their heart rate plummet, and then drop their oxygen saturation levels. Their monitors start ringing bells and flashing colors. It is truly agonizing to sit and watch a t.v. sized screen that says your baby isn't breathing. Imagine both monitors going off at the same time. Then imagine the mommy's face turning red because she's holding her breath too. If I had a monitor, it would probably say, "Get me some supplemental oxygen and a beer."

I've been watching the twins suffer from acid reflux and have more A's and B's in the last few days. That's where we are now. We can get the food down, we can poop the food out, we just can't keep some of the food from creeping back up. Owen usually chokes and tries to get it out of his throat. Elie, however, gets a determined look on her face and gulps hard like she's shooting cheap whiskey.

I spent ten hours at the hospital yesterday. The monitors, the lights, the bells, the bradys; it was so taxing. I felt heavy when I left - like I was wearing my dad's boots, and they were filled with water. I continue to remind myself to be patient. Thankfully, the A's and B's will occur less and less as they grow older, and will be completely gone by the time they come home. The acid reflux, however, will haunt them well into their first year of life. If they remain upright after a feeding, the food will stay down, and the pain will be lessened. I guess I'll just have to make a habit of holding them in my arms as much as I can every day. I can certainly think of worse jobs than that.

suck it!

Owen and Elie get their breast milk through a feeding tube - the food goes down the tube and dumps into their stomachs. Seems like the epitome of laziness, but the real reason the tube is used is because the coordination to suck, swallow and breathe at the same time doesn't set in until about 36 weeks gestation. The twins are now 34.

They decided to try Owen at the bottle, but the nurse told me not to get too excited about his first feeding. Most preemies have a lot of trouble with sucking on a bottle nipple - especially the first time. It usually takes them many tries before they can get into a good routine. But Owen isn't like other preemies. He's an overachiever, just like his daddy. I knew he could do it.

They gave the little guy his very first bottle on Monday morning, and he was able to take half of it. He had a minor setback on Tuesday (mommy won't count that one), and then got right back in the game by taking 30 of his 34 cc's of food yesterday. Everyone was so impressed (and surprised!) with his coordination. Man does that kid suck. I mean, he rocks.

movin' on up

There are two floors of NICU at Northside Hospital. Floor 2 is where the critical care babies stay, and Floor 7 houses those babies who are more stable. The twins have been living on the 2nd floor since they were born, but because of their progress during the last couple of weeks, they graduated to "stable baby" status, and were moved to the 7th floor early Monday morning. We were so proud to see them enjoying each other and their new de-luxe apartment in the sky!

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BELIEVE

The spelling of Eliot's nickname has been a topic of great debate since we named her last fall. Should it be Ellie (the way I write it because it seemed natural) or Elie (since there is only one L in Eliot)?

On Sunday night, a sign came ending the debate for good. Yes, a sign. Just a little note from the universe . . .

The birth of our twins was nothing short of traumatic (I know it's not the adjective most would use to describe the day their babies came into the world). It was late December, Christmas was a few days away, and Mike and I weren't feeling very merry.

While we were still in the hospital, our parents thought they would lift our spirits by decorating our house for Christmas. They went all out - Christmas tree, stockings, and decorations all over. I have a set of red and green blocks that say "B-E-L-I-E-V-E." They displayed the blocks on our bookcase in the family room, and when we got home on December 21st, the blocks were the first thing I saw. Mike and I stared at them and cried, realizing that this decoration had a much deeper meaning now. (I bought them to BELIEVE in Santa Claus, of course!)

When we put away our Christmas decorations on New Year's Day, we left the BELIEVE blocks on the bookcase. We both felt we needed a reminder to keep faith and hope at the forefront of our days. A long road was ahead in the NICU, and anything that would trigger our hearts and minds to believe in the strength of our babies was a good thing.

I have looked at those blocks every day since the babies were born. They were the perfect sign to stop and think.

On Sunday, I moved the blocks slightly to display a new vase I had bought. I didn't think anything of it at the time, but when I walked downstairs this morning, the B, V, and E were turned slightly to the side. And there it was, staring at me - right there in the middle of BELIEVE - Elie.

That's all the sign I needed. The spelling of Eliot's nickname has been officially changed, and if you still insist on being skeptical of signs - well, I guess you just need to learn to believe.

_________________________________________________

reunited

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girl gone wild, boy gone cold

Ahhhhhh. The elusive white spindle crib that escaped Owen just five days ago is now home to Ellie Mak. The nurse was able to quickly wean Eliot from her temperature-controlled isolette on Wednesday night, and by Thursday, she was kickin' it big girl style in her new crib.

The nurse tried to swaddle Owen and turn off his warming bed, but the little guy couldn't keep his temperature up again. Once he does though, the twins will be back together! They are so close to co-bedding, I can feel it.

Both babies are now up to full feedings (about 1 oz., 8 times a day), and are doing well on the nasal canula. Ellie's canula pressure was moved down from 4 litres to 3 yesterday, and Owen was moved from 2 to 1. That means the next step for little O is room air.

As of Thursday night, Owen weighed in at a whopping 4 lbs., 10 oz., and Ellie at 3 lbs. 12 oz.

Check out Ellie gone wild . . .

My beautiful new crib.

A new comfy mattress, pretty pink blanket. And look, mom and dad are here, too!

Woohoo! Look at me, look at me! I did it. I'm the best. I beat Owen to the crib!

I'm so worn out from woohooing . . .

Daddy is so proud of me.

Awake for 10 minutes, down for three hours.

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Owen's reaction to Ellie's making it to the crib first . . .

10 things

Ten things I wish my children could understand now:

- Your life will not be full of blood tests, x-rays, and bad news. There are beautiful things in this world, and you will have time to discover many of them;
- You can live without your wires, tubes, needles, and monitors, and you will;
- There are people all over the world - people that are related to you; people that are friends; and people that none of us know nor ever will. They are all praying for you, thinking of you, and rooting for you, and it is giving you strength - we are sure of it;
- You are blessed to have two grandmas and two grandpas that can't wait to hold you. They will teach you a lot of lessons on life and love, and you will be better people because you learned from them;
- You are also lucky enough to have three aunts, two uncles, and four beautiful cousins who are anxious to meet you, share with you, and play with you;
- You have two dogs that are waiting for you at home. One will lick your face, and let you take a nap on him. The other will try to nip your diaper butt. (Don't worry. We can send her to Grandma's.);
- This will not be the last difficult experience in your life. But, we hope that you take away just enough of your NICU journey to prove the tenacity of your body and spirit;
- Your ability to overcome this struggle has proven that you are on this Earth for a reason. You are destined for awesome things, and there are plenty of people who will join your fan club to cheer you on (but they will have to wait in line behind your mom and dad);
- Your parents love each other, and they love you;
- Great people come in preemie packages.

hit me baby, one more time

Eliot is getting better. I love writing those words. Eliot is recovering beautifully. I love writing those too. Her antibiotics end today, which means tomorrow she won't have any IV's in her body for the first time since she was born. It's amazing that her feedings don't come pouring out of her like a water balloon stuck with a million tiny pins. You're almost needle-free, baby girl. Congratulations.

Owen is dealing with his infection well. Unfortunately, in addition to the positive blood test, his urine culture also came back positive. So not only is the little guy fighting off the same nasty infection that Ellie just recovered from, he is also now fighting a urinary tract infection. I was never a good math student, but I'm pretty sure that two positives make a negative in this case.

Different week, different kid, same infection + 1 UTI for good measure.

another positive

It's official. Another baby is sick in the NICU. And it's mine. It's my baby. Again.

Owen's PICC line culture came back positive - proving his line was also housing bacteria. His first blood culture - taken yesterday - came back negative. The doctor assured me, however, that they often get false negatives on the first test. "Don't get excited just yet," she said.

Don't worry, I won't.

Sure enough, a positive culture on Owen's blood came back this morning. Fan-freakin'-tastic.

The twins were getting very close to co-bedding for the first time. Now we have to wait out the little guy's antibiotic regimen - another seven to ten days. Damn, damn, damn.

When Eliot got sick, she was lifeless and pale. She got so sick that at one point, they almost had to intubate her. Instead of going back on the ventilator, she got it together at the last minute, and was instead placed on the C-PAP to help her breathe until she recovered (not as much assistance as the vent). Owen, who we always believed was a little jealous of the attention that Eliot got during her illness, just needed his nasal canula turned up one notch. One little notch - that's all Owen needed to fight the infection. This kid is amazing. He may have a little jealousy issue, but he's amazing nonetheless.