Thursday, January 31, 2008

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.

Wednesday, January 30, 2008

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.

Tuesday, January 29, 2008

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.

Monday, January 28, 2008

are you serious?

Well, the four of us had a good day on Saturday, and we enjoyed it.

Eliot got moved back to the nasal canula. Her face, that had been hidden behind the wretched C-PAP for a week and a half, was finally visible again. It was so beautiful.

Owen was doing well too, so they decided to move him from his encapsulated isolette into a "big boy" open crib - an awesome, white spindle, twin co-bed crib. I moved him in on Saturday night - snug and swaddled - and when we left that evening he was happily staring at the ceiling and sucking on his pacifier. The look on his face was a little confused, as if he was saying, "Someone put down the lid!"

Around 9am this morning, we called the nurse for an update. "Eliot's doing okay," she said. "But Owen had a rough night."

Whaaaattttt?! Are you serious?

They suspect Owen has an infection now. (Insert mommy's heart dropping here.) He started having trouble with his oxygen saturation levels and his feedings - nothing major, the doctor said. He wasn't acting like himself though, so they took a blood and urine culture, and started him on a round of antibiotics immediately. Once again, the doctor thinks the PICC line was infected (deja vu), so they pulled it. Just like with Ellie's cultures (which, by the way, are all negative!), we will have to wait 48 hours to see if anything grows. Awesome. I feel like all I do now is stress out and wait for more test results.

We visited the twins early this morning, and the beautiful, white spindle co-bed crib that Owen would eventually share with his little sister was gone. Owen was put in an open warming bed because he couldn't maintain his temperature through the night - another sign of an infection. Just check them off the list, little guy. God forbid you miss any.

You would think - by now - that we would be used to this crap. But, we're not. One good day was really nice, but - seriously - could we just get a few more?

Friday, January 25, 2008

the lowdown

So, I owe everyone an apology. Apparently the use of "Rock Bottom" sent a lot of people into a fit of worry. I'm really sorry. I didn't explain the situation or the feelings very well. Sometimes it's all a little too overwhelming to digest - let alone express.

Here's the lowdown . . .

Eliot has now had a blood infection for eight days. She started to get better earlier this week, but then progressively got worse during the last few days. Three cultures of her blood all came back positive with the same bacteria - a staph infection that fortunately, is not too aggressive. We were optimistic seven days ago because the doctors said that this particular germ is treated very quickly and easily with antibiotics. Every night the doctors and nurses would assure us that we would see Eliot turn around tomorrow. "Tomorrow she'll feel and look better. Tomorrow her CRP levels will be lower. Tomorrow, tomorrow, . . ." Instead, we would get the early morning phone call that "today" didn't look good either.

So, here's what has transpired over the last few days:

Preemies get a PICC (pick) line placed when they are first admitted to the NICU - a tiny tube they feed through the vein until it reaches one of the main veins in the body. Because this vein is stronger than the little veins in the arm or hand, they can put a good amount of meds or nutrition into it without it infultrating or blowing.

The doctors were suspicious that Ellie's PICC line was contaminated and that it was continuously releasing bacteria into her blood. They removed the line on Tuesday night, but in doing so, they released yet another bunch of germs that had made a home on the line into her system. They believe now that this final release of bacteria kept her CRP levels elevated into this morning.

Because the infection was being stubborn, and no one was 100% certain yet that the PICC line was the source of infection, the doctor suggested a spinal tap to test for spinal meningitis. Now . . . take any normally sane, normally rational post-partum woman with two babies who have had a crappy first month of existence in the NICU, and throw the words - "spinal tap" and "meningitis" in front of her face. I guarantee "Rock Bottom" will be the first place she will go.

The spinal tap was performed on Thursday morning. True to form, Ellie was amazingly strong. (If you put a stethoscope on Owen's chest, he starts to cry.) While we won't receive the results from the culture of her spinal fluid for 48 hours, we did receive her white blood cell count a few hours later. The doctor said anything below 10 would show normal spinal fluid; Eliot's was 1. This low white blood cell count is a preliminary indication that there is less of a chance that her spinal fluid has been infected. We'll take that small piece of good news - thank you very much.

For now, it's just a wait-and-hope-and see. Mike and I are hanging in, and trying to be as courageous as Ellie. So, while rock bottom freaked out some of you faint at hearts, there is one truly wonderful thing about it: there's only one place to go from here. And lemme tell ya, we are going to enjoy our ride back up.

Thursday, January 24, 2008

rock bottom

It hasn't been a good week for the Axt family. Eliot got more and more sick as the week progressed. Her CRP level - which had started to decline and was at 6 on Monday - went up Tuesday morning, again on Wednesday, and one more slap in the face to round things out this morning. I feel like I'm walking in water.

We will still be in the dark for a few days, as it takes 48 hours for blood cultures to come back. When you are waiting for an answer about the cause and extent of sickness in your child, 48 hours seems like an eternity. Every "down" on this roller coaster ride has been difficult, but this - by far - is the absolute worst. We have hit rock bottom, friends. And it's hard.

I wish I had better news to blog about today. But more than that, I wish I had some good news to give Eliot. She deserves it.

Tuesday, January 22, 2008

the ride back up - slow and steady

So, we stayed lukewarm for much of Saturday and into Sunday morning - thinking about Eliot's infection, but not letting it send us into a state of total despair. We bought paint for the nursery; we looked at car seats; we even went out to dinner. And overall, lukewarm was fine. Not great, not horrible. Just fine.

One sign of infection is a raised CRP level (C-Reactive Protein). Anything above 1 is a sign of infection. On Thursday night, Eliot's was 1.2. Not a bad CRP level, and it could have just been a reaction to the Hep B vaccine she had received for her one-month birthday (what a present). On Friday morning, it was 6 - a definite reason for concern. On Saturday morning, it continued to go up, but we were assured that she looked better and that the CRP sometimes lagged behind. On Sunday, the infection buckled under the pressure and started its descent. Thankfully, it continued to drop this morning - a sure fire sign that Eliot is making one of her famous comebacks.

As of Friday, Owen was still have a feeding issue, and was struggling to digest 1cc of milk, so he was put on a medication that would encourage his stomach to move the food downward instead of upward in the form of lime green spit-up. By Friday afternoon, he was finally tolerating his tiny feedings better. They moved his feedings up to 3cc's, and we remained hopeful (lukewarm, but hopeful). On Sunday, they advanced his feedings to 6cc's and tonight - a whole 9cc's! 9 cc's! Why, that's almost 2 whole teaspoons of breastmilk! Rock on, little man. Rock on during the fun ride back up.

Eliot has been an eating champion since the beginning. She never had a problem with digestion, and was allowed to continue her feeding schedule during her recovery from the infection (this is pretty rare, as most babies' digestive tracts suffer when they are sick). They were able to increase her feedings tonight to 15 cc's.

The ride back up is always great. Our spirits raise and our attitudes change. But we never ignore the setbacks - instead we think of them as little reminders to stay buckled in. This ride is definitely not over.

Saturday, January 19, 2008

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.

Friday, January 18, 2008

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.

Thursday, January 17, 2008

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.

Wednesday, January 16, 2008

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.

Tuesday, January 15, 2008

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.

Sunday, January 13, 2008

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.

Wednesday, January 9, 2008

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.

Tuesday, January 8, 2008

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).

Monday, January 7, 2008

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.

Saturday, January 5, 2008

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.

Friday, January 4, 2008

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.

Thursday, January 3, 2008

cool dude

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

Wednesday, January 2, 2008

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!