Medicines and Oxygen and Feedings, Oh My!

Lily came home on a lot of medications-well, I guess not a lot, but there was prevacid, reglan, lasix, aldactone and caffeine, all were given at different times, different amounts, multiple times a day, etc…  Type-A mommy to the rescue.  I can make a mean chart, pre-fill oral syringes, and check off boxes like no one’s business! All medications lined up with feedings, so every three hours Lily ate a bottle and took her drugs.

Because Lily had to stay longer in the NICU due to feeding problems, we were forced to devise an interesting feeding position for her.  Before having a bottle, Lily had to be tightly swaddled and then placed upright in this foam infant chair that they ordinarily use in radiology to prop up and hold babies so they can force-consume barium.  The hospital lent us the chair.  So every three hours we swaddled Lily, checked the chart and administered medication, fed Lily a bottle, and watched her oxygen stats lower, listened to her choke, and then covered our ears as her monitors shrieked with disappointment.

What monitors?  Lily came home on oxygen, but only ¼ liter, which is pretty much the lowest oxygen level you can get.  We were all pretty sure that she didn’t actually need the oxygen, but we followed doctors’ orders. She also came home on 2 monitors-one monitor measured her oxygen saturation and the other measured that she was actually breathing (an apnea monitor).  So every day we reattached her leads and listened to the false alarms.  Normally the lead slipped or came lose or her legs and feet were moving too much for the system to register…but while Lily was eating, there were no false alarms.  When she choked, it registered.  When her lips started to turn purple, it registered.  And it was loud, like those scary emergency alert sirens that go off on our cell phones and scare the bejesus out of us when we’re driving (it’s nice to know about the flash flood warning, but I don’t want to get into a car accident because of it).  So you’re holding your tiny baby, she has three wires dangling from her body, they are constantly falling off because she’s a very active little girl, plus the oxygen tube, you have to swaddle her, and then calmly watch her choke while you feed her.  Yeah, parenthood is a blast!  And don’t forget about the thickened feeds-so preparing a bottle wasn’t the easiest thing in the world. 

We adapted.  Quite frankly, we didn’t know any different, and the hubby and I made jokes about how easy the next one would be since Lily was so labor intensive.  But it was nice to have the monitors-it was like added security because you knew that she was breathing and that everything was alright.  And then the monitors didn’t work.

I was just sitting on the couch looking at Lily-she was sitting in her infant seat on top the coffee table, and smiling and looking at me and then, she coughed.  It was just a little cough, nothing out of the ordinary and certainly nothing to be alarmed by.  And then her lips turned blue, and I don’t mean the inside of a blueberry which is really purple…I mean blue, like a sunburnt smurf.  I picked her up and started whacking her back so hard-I tried to remember everything from infant CPR, so I kept whacking her and waiting for her to cry because if you can cry then you can breathe.  I screamed for my husband but he was upstairs taking a well deserved nap and he clearly couldn’t hear me because he didn’t come running down.  I kept screaming and whacking for what felt like an eternity but was probably really 30 seconds or so, before the hubby came bounding downstairs.  The alarms never went off.  He took Lily and I collapsed into hysterics.  She was fine, clearly she was fine, she was breathing and her color was completely normal, but why the fuck didn’t the alarms go off? This was the reason we had them.  What if this happens in her sleep? I can’t stay awake 24/7 to watch her.  She’s going to choke to death in the middle of the night and it’s going to be my fault because I can’t stay awake.

We called the pediatrician but it was late at night and we got the service-they assured us that someone would get back to us.  Thirty minutes later we called again, and again we were assured.  Another thirty minutes, same drill, same result.  We drove to the Emergency Room-I hunched over Lily in the backseat while my mother drove and my hubby tried to stay calm.

11 Weeks, Part 3 (A)

By the third month our routine was ingrained-we had our schedule down, our nurse was amazing, I had the hospital completely wired (free sandwiches…see me), we were busy saying goodbye to the other NICU mommies we’d grown very fond of…we were in a complete holding pattern, just waiting for the day that we could bring Lily home.  There were a lot of near misses, a lot of proposed release dates that never came to fruition, either because Lily was choking on her food or her reflux was completely out of control.  There were proposed surgeries and procedures and studies and experts…but everyone agreed, “It’s just going to take time for her to grow out of this.”  Have you ever told an extremely type-A person to just sit still and wait? How did that work out for you?  I guarantee whatever reaction you got, it was way worse for Mr. or Ms. Type-A than it was for you as the messenger.

And then the doctor set a date.

I washed everything! Multiple loads a day of clothes and bed sheets and bibs and anything that might touch my daughter.  I completely forgot what sleep was because I was finally allowed to nest and I had to get everything ready-my level of glee was frightening.

Before they release your child from the NICU, they ask you to spend an overnight-the nurses wake you for feeding times and you sleep there to get accustomed to the amount of work your baby will be.  So I packed a bag and go ready for a long night.  They warned me ahead of time, “your kid has no circadian rhythm so you will be up, a lot,” but I wasn’t worried.  How bad could it be?

The first problem was that my daughter’s hospital crib did not fit into the overnight room.  The nurses tried many times, but they couldn’t force metal through metal, so I couldn’t sleep in the NICU. I ended up in the NICU overnight room, and a NICU nurse had to come and wake me every three hours so that I could feed Lily.  I didn’t get to sleep next to my daughter, we were separated by two locked doors and a short hallway, but hey…it was next to the best thing I could get.  The second problem was that Lily had an amazing night that night-she wasn’t up at all. It was like she realized that I was there so she wanted to prove to the nurses that she was a good baby.  This wasn’t a problem for me, but the nurses were worried that I wouldn’t get a realistic understanding of Lily’s behavior.  I made it through the night just fine, and two days later, there we were…taking Lily home.

The hubby packed the car-at this point we had basically moved into the NICU, so we had a lot of stuff.  I prepped all of Lily’s equipment (more on this, later), dressed her in her adorable take me home outfit, and waited for the car.  The hubby drove and I rode in the back with my daughter, who was finally coming home.

It’s nearly impossible to describe just how happy I was to take Lily home.  I don’t know what it feels like to give birth and go home with the baby, so I have no frame of reference, no control group with which to compare.  I just know that everything inside me was singing the most beautiful song in the whole entire world, and my hubby knew all the words. 

I took this photo, 9/28/12-the day Lily came home from the NICU-11 weeks after she was born.

Normal

I have standard responses for most questions about my daughter.

Q: How old is she?

A: She’s 7 months, but she was born early so she’s small.

Q: Is she meeting her milestones?

A: Yes! We are very proud of her-she’s our little rock star.

Q: Where did you get that outfit? It’s adorable.

A: My mother bought it from Gymboree.

Q: Is she going to be normal, you know, like other kids?

A: (blank stare and pause)

…I’m not sure how to answer.  I think, “I don’t know, is your kid normal.  Because she’s/he’s pretty ugly to me, so if that’s normal, then no, my kid isn’t normal.  And what is normal? Is it being able to roll over? Yeah, ‘cause my daughter nailed that.  The smiling, laughing, pulling you in with her luminescent eyes..since day 6! And making consonant sounds…been doing that for months.  Standing up while holding onto something…yeah, I guess she’s just advanced for her age or something.  Affection? I get the sweetest kisses in the whole world.  Grabs my face between two hands and plants slobbered filled goodness all over my face.  Normal? Normal? Yeah, she’s not like normal kids, because she blows your kid out of the water with the courage she has in her left eyebrow and the strength she has in her right big toe.  You can see it in her eyes and her expressions-she is always thinking.  I’d love to see your child even try to think, ‘cause I have yet to witness it.  I hope to god that she is anything but normal, because normal is boring and uneventful and far beneath my daughter who is the bravest person I know.  So yeah, go fuck yourself with your ‘normal’ and enjoy your melba toast life with your normal kids and your normal family and your normal lifestyle.  Because I’ve never been normal and I don’t plan on raising my daughter as such.”

A: (fake smile)…she’s doing very well-we are so proud of her!

I Think My Daughter Hates Me (Or, Teething is a Bitch)

So I haven’t written much this week because my daughter is teething-hard-like a bitch!  Nothing has made an appearance as yet, but her constant screaming and spitting up is pretty indicative that teeth are on their way-you can feel their jaggedness and see their outlines.  I think they’re suffering from what The Simpsons calls 3 Stooges Syndrome-they’re all trying to cram their way through at the same time, so nothing is coming in.  And before you ask…yes, we have tried balms and lotions and children’s Tylenol (don’t give me lip about drugging my child-we use it sparingly and only when she is in true pain) and distraction and soothing baths and pretty much everything except liquor on a rag that she can suck on, but we’re getting close on that one (oldies are goodies).

The only thing keeping me from going over the edge, and trust me when I tell you that I am close, so close to going over the edge, that as soon as the hubby gets home I hand Lily to him and I walk away because at that point if I don’t walk away bad things are going to happen…breathe…the only thing keeping me from going over the edge is remembering that even when she is punching me and pinching me and screaming at me and spitting up all over me…she is not doing this on purpose. Lily is doing all of these things because she is in pain and she doesn’t know why.  She can’t make it go away.  And when it does go away it’s like all the hellish clouds part and she is, once again, my smiling happy baby who coos and laughs and stares at me in wild wonder.  We have full out conversations made of bubbles and animal sounds.  And I can’t help but forget the hours of drudgery and the smell of vomit on my shoulder because all my daughter does is laugh and love me. And really, what’s better than that?

But then the clouds reappear because the numbing lotion has worn off and suddenly her loving stare turns to a furrowed brow and then her mouth opens and she’s screaming-she’s screaming like someone is murdering her and big, huge, drink me Alice in Wonderland sized tears are falling down her face and she’s cramming her fingers into her drool-pocolypse mouth and there’s nothing I can do except pick her up and rock her until the shooting pain goes away.  She is helpless and I am double helpless because there is nothing I can do to help her and I can’t avoid her flying fists of fury.  This is when I am convinced that my daughter must hate me because she seems to be a sadist-like by hurting me she will feel better.

It’s been a dark week, and I’ve definitely had those thoughts that every mommy (at some point or another) has: “I can’t do this, I don’t want to do this, I want to give her back and return to my old life.” If you’ve never had those thoughts, you’re simply not human.  And at the end of the day I do have a wonderful husband who takes Lily out of my hands and lets me regain some semblance of rationality.  I miss my mother-she went back to L.A. this week and she’s the best daytime break that I get.  I really admire single moms because there is no way that I could do this alone-I do have a great support system of relatives and friends-but that doesn’t mean that, sometimes, I’m convinced that Lily hates me and the feeling is mutual and all I need to do is hop in my car and drive into the city and rewind a couple of years because my sister is living in the old apartment, so I know how to get in, and I can just pick up like it’s 2008 and I’m carefree and much thinner-plus I can go to work and have adult conversations.

And then Lily smiles…

Great Suck, Terrible Swallow

So, you might be asking yourself, “why was Lily still in the NICU if her breathing was taken care of and she was healthy”?  Well, Lily had two issues that needed time to be resolved. The first issue was the central apnea that I mentioned previously-basically, her body would just forget to take a breath.  Even full term babies do this, and then they take a few catch up breaths.  It’s actually pretty normal, but for preemies, you need to stimulate them to take the catch up breaths.  The apnea gets worse when the baby is too taxed.  And for Lily, drinking from a bottle was the most taxing part of being in the NICU.  You wouldn’t know it now, considering she just drank an entire bottle and ate an entire package of string beans in 30 minutes, but eating was Lily’s biggest hurdle.  She really couldn’t coordinate the breathe, suck, swallow motion-again, this is something that full term babies can also have a problem with, but Lily was never going to graduate from the NICU if she couldn’t drink a bottle without it throwing her into an apnea fit.  My daughter would hold her breath, suck in too much fluid, and then be too overwhelmed by how much formula was in her mouth, so she’d choke.  She had "a great suck, but a terrible swallow” (and no, the hilarity of that diagnosis was not lost on us, even in our misery-it reminded me of this one time that my dentist, who is older than my parents and who I’ve been seeing since middle school, tried to help me with my sensitive gums, and said “you know, just put something in there and move it around, suck on it a little”-he realized how awful it sounded, but I was too busy laughing hysterically to hear his multitude of apologies).

Lily had to stay on her feeding tube far longer than expected because of her bottle problems, and she had to stay on oxygen longer than expected because of the feeding problems-they couldn’t wean her off of anything until she stopped choking.

Coupled with the choking was another serious problem that also triggered the central apnea: acid reflux.  You might be thinking, “silly baby, I have acid reflux and I just take xantac.”  Acid reflux is different with babies.  And yes, yet another thing that happens with full term babies, but with preemies, they feel the acid come up, it burns, and they stop breathing! Woo hoo for more apnea.  The solution is medication, first xantac and then prevacid (which did work, eventually).  The solution is sleep position, notably, sleeping on your front because then the acid doesn’t creep up.  The sleeping on your front issue became an even bigger dilemma once we were released because the current trend in pediatrics is “back to sleep”-all babies MUST sleep on their backs because it seriously reduces the risk of SIDS. Well, I had a kid with terrible reflux who was sleep trained on her belly, so she stayed on her belly!  So once the reflux was under control, Lily could come home.

But, the eating wasn’t under control. The choking is what kept Lily from coming home.  Even with thickened feeds, being over 6 pounds (they let you out of the NICU at 4 and a half pounds for good behavior), the lowest possible setting for oxygen, and being super duper cute, Lily had to get the choking under control-great suck, terrible swallow.  I can't wait to joke with her future husband about this one!

11 Weeks, Part 2

One of the first things you learn in Journalism (other than the fact that you shouldn’t have an original, funny email address while you’re in college-your professor doesn’t appreciate that-your email should be your name-I was doomed from day 1) is that no one wants to read about the process; they only want to hear about the result.  It’s true.  No one wants to hear about the endless debates, stonewalling, points, counterpoints about a bill on the house floor-we only care about whether or not the bill passed, and most of the time we don’t care about the why or the how. (Frankly, most of the time we don’t know about the bill, either, but that’s a whole other issue.)

At this point in our NICU stay, we were in the process-month 2.  Every day was the same; every week was the same-we established a schedule.  I was there most days, all day long, two nights a week the hubby came to the NICU directly from the city…there were a lot of variables, and I’ll spare you the details of our thoroughly mapped out schedule, but most of the time I was just there all day long.

To answer your question, yes…it was VERY boring.  Lily was asleep most of the time, and there’s only so much you can stare at a 4 pound lump of gorgeousness.  I brought magazines and books.  The doctors and nurses often commented on what I was reading or asked me questions about the material.  Then my mom got me an iPad, which quickly turned into my own, personal solitaire playing device.  There was no cell or wifi access in the NICU, so I was pretty much cut off from humanity, which was actually a really liberating experience.

This is also when we realized that 6 weeks was a shot in the dark-the hubby and I never really thought that Lily would come home after 6 weeks, but we both held out a secret hope that it might happen.  We both felt like deflated balloons as week 6 came and went and Lily was still being held captive in her plastic cage.

The one thing that made the monotonous hell slightly bearable was Cathy.  Who was Cathy?  To explain that, I need to backtrack (slightly).  There are many nurses in the NICU and most, almost all, of the nurses are truly top notch-I’m not exaggerating. Irish Brogue who Lily dealt a left hook was our nurse at the beginning, and she was amazing.  As Lily grew bigger and stronger, and as schedules permitted, we were passed from one pair of excellent hands to another pair of excellent hands-the nurses cared for me just as they cared for my daughter.  But Cathy was different.  I am not a crier-at least, I am not a crier in public.  It is extremely difficult for me to let down my guard enough to cry in front of my best friends, let alone complete strangers-I know that seems antithetical to what I’m doing here, writing out all my thoughts and emotions.  It’s not that I don’t express myself and it’s certainly not that I don’t have feelings, I just don’t like it when people see me cry.  On Cathy’s first day, I walked up to the isolette, and I just started crying.  I barely said 2 words beside “hi” and “I’m mom” and then I started bawling.  Clearly, I knew that Cathy’s energy was unlike any other NICU nurse-I was comfortable around her; I could let go; I could start to deal with the reality of everything.

Cathy understood that as Lily got older, she needed more love, and not just adjusted medications.  She had me bring in books and clothes and toys and Lily’s infant seat-normal baby things that I’d been stock-piling at my house, staring at and wondering if Lily would ever use-Cathy found a way to create a mini-nursery in Lily’s corner.  This is also when I got to breast feed Lily, and cried in front of Cathy again-tears of joy, though.

I told you…the process was boring.