hello bad news. my name is kerrieann.

"This is my husband, Michael, and our children, Owen and Eliot. What's that? Ohhhhh. We've met before? Like one hundred freakin' times?"

I guess it's a good thing that my Internet was down for most of Friday because there would have been a lot of *bleeps* and *bleep bleeps* in my blog that morning. And those kinds of words would not have been the best for my old 7th grade students to read. I guess all things happen for a reason.

On Thursday night, Ellie Mak came down with an infection (right after I had written about her amazing recovery). Mike and I noticed that she looked very lethargic - not the Queen Ellie we know and love. We told the nurse that she did not appear to feel well, and to please keep a close eye on her through the night.

Around 4am, Eliot took a nose dive. According to the nurse, she became very pale, couldn't keep up her breathing, and ended up back on the dreaded "we've been down this road and it sucked the first time" C-PAP. Her blood test results on Friday morning indicated that she did indeed have an infection, and she began two kinds of antibiotics immediately.

With all of the bad news we've had in the past few months, we just went through the motions this time. I told Mike that Ellie was very sick. He said, "Oh no. Really?" And then we both rolled over and went back to sleep. It's not that we weren't concerned; and it's not that we weren't sad or scared. I think we reacted so shallowly because we are both so tired - so sick of the ups and downs that we figured if we just stayed in the middle, where there isn't emotion one way or the other, then we wouldn't have to feel the pain when our heart gets happy, and then gets smooshed the very next day. Lukewarm is sometimes the best temperature.

happy birthday, babies

The twins celebrated their one-month birthday yesterday - January 17. Mike and I were going to take them to Chuck E. Cheese, but instead we played it low-key with a small party at the NICU. That's how we roll.

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the recovery of ellie mak

Eliot is recovering amazingly well from her PDA surgery last Wednesday. I was in desperate need of a success story before she and her little heart were transported to Scottish Rite, so I talked to a parent of a NICU baby who had just had the surgery done the week before. Her son had been on painkillers - morphine - for five days after his surgery. So, of course, that's what I was expecting for Eliot.

Instead, Ellie Mak was given painkillers (not as strong as morphine) on the day of her surgery, then moved to Tylenol every four hours on Thursday. That night, only one night after her surgery, she took matters into her own hands, and extubated herself from the ventilator. She was taken off Tylenol for good and put back on the C-PAP for two days. On Saturday morning, she was placed back on the nasal cannula at room air, and by Sunday she was feeding again on breast milk. She is now up to two teaspoons, or 10cc's of milk, and is 3 lbs. 1oz today. Mommy did a little happy dance for hitting the three-pound mark. Dee daa daa daa daa dee dee.

I always knew I would be proud of my children, but I thought it would be because they walked early; or ate all of their peas; made the honor roll; or got accepted to Stanford (but then declined because it was too far away from their parents). I did not expect pride on this large of a scale. Most kids at this age are eating, peeing, puking and pooping. Her story is so much more involved - so much more scary and intense (though it does involve the "basics" too, and they stink just as good). I suspect, if she continues to live her life with the same kind of grit and determination that she has showed during her first few weeks on Earth, she will reach superhero status in no time. And that will make her mommy very, very proud.

holy crap!

The results from Owen's Lower GI are in, and everything looks completely normal! Yeahhhh! What was not normal, however, was his diaper three hours later.

When the nurse asked us who would like to change him, I quickly replied, "Daddy does!" (I'm no fool.)

Ladies and gentelmen . . . the ugly aftermath.

butt what?

We have always said that Eliot got the brunt of Owen's eagerness to enter the world so early - collapsed lung, five blood transfusions, and heart surgery. And all the while, Owen lay in his bed, flirting with the nurses and smiling the day away. Well, this afternoon, Owen got his fair share.

Fully recovered from his infection, Owen now looks and feels great. But the doctors felt one more exam was in order - a barium enema. Butt what? The x-ray film from the enema will show the motility of his large intestine and ensure that there are no strictures or blockages. I visited him right after his test, and his eyes were hilariously wide and dismayed.



If you listened closely, you could hear Eliot giggling uncontrollably.

on strength

A friend described me today as "strong." I just laughed and said, "Wow. I must be a great fake."
"Seriously," she said. "It must be so hard. I don't think I could do it."

I thought about this all day. Me? Strong? She who stayed in her hospital bed the day her children were born because she thought - at 27 weeks - they would still look like tadpoles? She who isn't in many of the pictures on her own blog because she is usually having all-out bawling sessions in the hospital bathroom? Me? Strong? Naaaaah.

What struck me even more was the fact that she didn't think she could live my "oh-so-difficult" life. For the record, my life rocks. I have it all: husband I adore; great family and in-laws; fun job; caring friends; and non-drooling dogs. I've always felt unbelievably blessed and lucky. And on top of all of the good things in my life, I have beautiful twins. Yes, they were born early, and yes, they are sick and little. But so what? They certainly don't make my life any less good.

The fact is none of us are ever ready for a traumatic event to hit our lives. And when it does, most of us feel wildly unprepared. I know I did. This clearly isn't the motherhood that I dreamed of. I never thought I would say, "Look at the beautiful wires and tubes that I gave birth to!" But, for whatever reason, it's still the part I was given. And I play the role - with emotion, grace, and a fair amount of humor. I'm not sure, however, that this attitude proves my strength.

If you want to call someone strong, look at my kids. I can 100% guarantee that neither one of them came into this world and thought, "I don't think I can do it." Instead, they continue to fight every single fight they are given, using every bit of their tiny bodies to do it.

Every morning, I get up and go to the hospital. It's not hard to do when I think about what's waiting for me there: two four-week old babies who are ready to teach me a few lessons on will, determination, and strength. And it is the two of them - and their inspirational approach to life - that make my role as "the mommy" quite easy.

project heart heal

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arrival at scottish rite

Ellie was transported from Northside Hospital to Scottish Rite early this afternoon. Mike and I rode with her in the ambulance. She was very stable (much more so than I), and got settled in quickly in her new "crib" at Scottish. She was back to her Queen Eliot ways within minutes - frowning at the nurses, and sticking out her tongue at the doctors. Her surgery is scheduled for Wednesday morning, and should take less than an hour. She will stay at Scottish Rite for a day or two. Please keep her in your thoughts and prayers.

Owen is recovering from his intestinal infection, and will be finished with his antibiotics this Friday. He is jealous that his little sister got to go on "vacation," and he didn't.

Let's hope our next vacation is more fun for everyone.

one of those days

I went to the hospital this afternoon, and the nurse blind-sided me by saying, "Ellie's PDA has reopened again, and Owen's belly is still struggling to recover from his sickness."  She laughed and said, "I guess it's just one of those days."

One of those days?  One of those days is when your kid spills some Cheerios on the floor.  It is certainly NOT when one of them has a heart that won't heal, and the other's stomach is being tormented by an infection.  No, no.  This is not "one of those days."  This sucks.

Ellie's PDA reopened - again.  The doctors have decided that surgery is the only answer at this point.  She will be transferred from Northside Hospital to Scottish Rite (across the street) tomorrow afternoon, and her surgery is scheduled for Wednesday morning.  We are totally numb from this news.  Numb and powerless.

Owen is still recovering from his infection.  Luckily, nothing grew on the cultures that were taken on Saturday morning so the medicine beat the infection before the infection could beat him.  He will be on antibiotics until this Saturday, and will not be given breast milk again for at least another week.

We had just started to see a glimpse of the twins' personalities before this setback.  Ellie finally got off of the c-pap and was opening her eyes, throwing fits, and moving around adorably. Owen - our rock from the beginning - suddenly became a helpless victim to a sickness that left him hungry, tired, and cranky.

The four of us have a long week ahead; sometimes I wish I could just blink my eyes and have all of these days be over (or at least a little easier).

queen eliot

Eliot has become famous in the NICU for her "Queen" attitude.  She has been known to throw a serious temper tantrum when she has a dirty diaper, or she wants to be turned on her belly.  I didn't believe the nurses who told me about Ellie's meltdowns.  But, I witnessed a very scary episode today . . . and oh my, this baby has skills.

i think there might be something in my diaper.
if i beat my arms up and down, i'm sure someone will respond.
what?  no one came running?  you sorry souls - you leave me no choice.
one last deep breath for sustained screamability . . . and . . . 

queen eliot needs a new diaper right NOOOOOOW!!!!!!

The loyal servants came running to wipe and wash Queen Eliot's dirty derriere, and she slept happily ever after . . . until the next poop.

this ride

We know the NICU is a roller coaster ride - we've heard it; we've said it; and it's been proven. But every time the roller coaster goes down, I go into shock again. I don't know why. I've heard it; I've said it; and it's been proven.

When I'm not at the hospital, I call every two to three hours to check on the twins - even through the night. At 2:30 am, they were both resting and doing well. But at 5:30 am, Owen was suspected to have an infection. He was having more A's and B's (apnea and bradycardia - preemies' brains don't tell them to keep breathing, so they have frequent dips in heart rate and oxygen saturation; it's very common, and they usually outgrow it). His stomach looked swollen, and his blood work was elevated. They had already started him on antibiotics and had taken cultures to see what kind of infection they needed to treat. The nurse told me she was very surprised because "he looked so good - smiling at her and looking around." His good looks are only mildly consoling though. I know a lot of people who can mask a sick stomach under a pretty smile.

Ellie's PDA that had been miniscule after being treated once during her first week of life had cruelly reopened on Friday morning. They were treating it with another round of Indocin again every twelve hours over the next day and a half. This morning, her kidneys had slowed (a side effect of Indocin), and they had to stop the medicine. Luckily, however, the PDA had decreased in size already. They checked her blood to see if she also had an infection, but it came back negative. They have stopped her feedings until her urine output increases and her kidneys show signs of healing.

I know the news isn't always going to be good, but you never feel prepared to hear that your kids are sick, and there's nothing you can do to help. And if you think I found some grand, inner strength to deal with the drop in the roller coaster ride, I didn't. I just sat down and cried. I cried a long, hard "why us?, why them? cry." But after the catharsis, I got up, took a shower, and hid my helplessness and fear under a few swipes of mascara and some pink lip gloss. (I figure if Owen's playing games, so can I.) Mike and I decided that the job of parenthood doesn't stop when you're scared, or sad, or unhappy, and our strength as parents is certainly not compromised by the tears that we have cried. So, off to the hospital we go . . .

This ride isn't fair - not for us, nor for anyone who has had a baby come into the world too early. I've heard it; I've said it; and it's been proven.

even the silence

"Even the silence is part of the music."

When the twins were born, they both cried immediately.  What a blessing.  But because Eliot got so sick soon after her birth, they had to intubate (placing a tube down her trachea so that they could mechanically ventilate).  Because of where the tube hit, she could not make a sound because her vocal chords were restricted by the tube. Once she was off of the ventilator and on the c-pap, she would open her mouth to scream, but nothing would come out because her throat was so hoarse.  I could hardly wait to hear my daughter cry.

Tonight, while I was getting ready to change her diaper (and I won't divulge on the mess that was waiting for me there), she let out a wail.  I looked at the baby next to her - thinking it must have been her, but that baby's mouth was filled with a bottle.  Ellie was indeed crying - screaming, in fact.  Not a little kitten cry either.  She let out a big fat, "Get this crap out of my pants" cry.  And I just sat in the rocking chair next to her bed and cried a handful of happy tears.  (Mike and I have learned to categorize our tears now.)  "My kid can cry," I said smiling.

 

T.S. Eliot said, "This love is silent."  Well, for Miss Ellie Mak, it's not anymore. This love is loud.

cool dude

According to Owen, the new style in the NICU is to pull your britches up to your armpits.

uncanny resemblance

like father, like son.

you've got to take the ups with the downs . . .

People have repeatedly told us that the NICU is a roller coaster. True that.

On Monday, the nurse heard a large heart murmur on Owen - a sign of a PDA (patent ductus arteriosus), so they scheduled an echocardiogram to check his heart. (We had already gone through this with Eliot during her traumatic first week, and it was fixed easily with three doses of medicine.) Unfortunately, they found a large PDA on Owen which confused everyone. Owen has always looked so good (chubby, good color, good blood pressure, no respiratory problems). But, we knew that at some point, we would get some luke-warm news about Owen's health, and one of the million things that we have learned from this experience is to take everything in stride. There will be good days, and we should celebrate them. There will be bad days, and we should deal with them.

The worst part about this was Owen had to stop feeding and get an IV (I would have gladly stuck myself a hundred times to avoid his having to get up close and personal with another needle). He was on 4cc's when they stopped his feedings on Monday, and he received three doses of Indocin - Monday night, Tuesday morning, and Tuesday night. A follow-up echo was scheduled for Wednesday morning.

News came back today that the medicine helped the PDA (just like it had done for his little sister), and he needs no further treatment. Score for the big guy. Owen will be back on his feedings Wednesday night - 4cc's (a little less than one teaspoon).

Ellie is doing very well. They have moved her down on her c-pap, and the next step now is the nasal cannula. She has been feeding so well - up to 8cc's (1 1/2 teaspoons)! Way to go Ellie Mak - pack on those chub rolls!

pictures of the twins (with music)

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yummy, yummy

Both babies are now feeding on breast milk through a feeding tube. They cannot taste the milk yet, but once they realize their bellies are full, they calm down a lot.  It's so cute to watch. We have noticed a huge change in both of them since they started their feedings.

Owen - who was born at 2 lbs. 7 oz - now weighs a whopping 3 lbs! And little Ellie Mak, who was a teeny-tiny 2lbs., 2oz. at birth, is quickly catching up to her brother.  She now weighs 2lbs., 7 oz. How cool is that?

the hardest weeks . . .

Mike and I knew that the first two weeks would be the most difficult - emotionally for us, and physically for Owen and Ellie.

Owen - which means "young fighter" - was named because of his constant activity in utero. On the majority of my ultrasounds, Owen could be seen kicking his little sister.  Now that he has made his appearance into the world, he has proven once again that he is a fighter. Owen was ready to be born at 27 weeks.  Arms flailing, he cried immediately - a good sign, we were told by the doctors.  When babies are born prematurely, one of the biggest problems is the viability of their lungs.  Owen never had any major complications.  When he arrived in the NICU, he was placed on a C-PAP, an apparatus used to hold the lungs open to make it easier to breathe.  He needed no other intervention and has quickly weaned himself away from the C-PAP to a nasal cannula - a total miracle.

Eliot - named after T.S. - also cried immediately after birth, but was less psyched about her early introduction to the world.  It took the medical team a lot more pushing and pulling to get her out (obviously smarter than her brother already).  The first two days, Ellie did great considering she was so small at birth - 2lbs., 2oz.  But on the second night, she took a turn for the worse.  Her right lung looked "ugly," and the doctors decided to collapse it.  They turned her over on her side, pushing all of her air into her healthy lung, and within two days, her bad lung had fully collapsed.  You can't imagine the sight. 

After this successful procedure, the doctors did an x-ray of her brain, believing that the trauma she had endured had given her small, underdeveloped brain a hemmorage - otherwise known as a brain bleed.  We found out that day that she had suffered a small IVH - intraventricular hemmorage - but that the blood would most likely be reabsorbed by the body without causing any problems in her future development.  Two x-rays later, the medical team was no longer worried about Ellie's IVH, and we were ready to move on to the next day . . . and the next test.

Eliot's blood pressure started to become unstable during the end of her second week in the NICU.  She was given a medication to control it, but it didn't work.  Low blood pressure can also be a sign of a PDA - patent ductus arteriosus.  PDA is an opening between two major blood vessels, the aorta and the pulmonary artery.  It is common in premature babies and is supposed to close within two or three days of birth - once the heart adapts to life outside the womb.  Ellie's heart did not.  They treated it with Indocin, and after only one round (they could have done three), it had become so small they didn't think it would affect her at all.  And . . . her low blood pressure was tied to the PDA because after its size was reduced, her blood pressure stabilized.  Score: three for Eliot, zero for preterm catastrophes.

During Ellie's lung collapse, she was put on an oscillator, which breathed for her.  She was also put on a paralytic, a drug to paralyze her so she wouldn't fight the machine that was breathing for her.  She just laid there - completely lifeless.  By the middle of the second week, she was on a C-PAP - a huge graduation from the oscillator.  Mike and I couldn't believe the work this kid had done in the first few days of her life.  And while it was so hard to watch her recover, and then see her get hit with another complication, watching her now - breathing room air on her own and sleeping peacefully - is the greatest gift ever.  Another total miracle.

 

together again!

When the twins were born, they were unable to find two cribs next to each other (I know they are incubators, but I still call them cribs), so Owen was put in Pod B, and Eliot was put in Pod F.   Mike and I would spend an hour in one, and the next hour in the other - feeling guilty if we spent too much or too little time with one.  We kept wondering if the twins ever missed each other; after all, they did spend over six months together in very close quarters.

We continued to ask the NICU nurses to move Owen (Ellie was always too unstable) so he could be closer to his sister, and we waited patiently for a spot to open up near her.

Tonight, a spot opened near Owen, and we asked if Eliot could be moved.  Since she has been so stable for the past few days, they decided to move her crib next to her brother's. Something in me tells me that they each know the other is there. Since Eliot got moved, both babies have made continuous improvements every day.  What a reunion!

the twins have arrived

Baby boy - Owen Michael - and baby girl - Eliot Makenna - were born at 10:12am and 10:15am on Monday, December 17th.