Onward and Upward

7.3.17

“We’re so proud of how she’s doing so far and very optimistic about all of this. She has a great team taking care of her, which is a major blessing.”

We felt optimistic about the progress Oaklee had made, having been switched to a vent on the first.

We felt like parents, having finally gotten to hold our baby on the second.

And then we entered into a totally new stage – yet another one we’d neglected to think about/prepare for (as if we could) – one where we’d navigate, together, home, work and hospital.

July 2 was my first time in a car since May 26. My husband and I drove home together after spending the morning and afternoon with Oaklee and then going through my discharge instructions. Everything felt odd about that day. I was going home. I was nowhere near recovered. I was leaving the hospital I had been bound to for 37 days. I was finally going to sleep in my own bed. But my baby was staying.

When we got home, we took naps before unpacking the boxes of my stuff that had accumulated at the hospital. We were exhausted. After unpacking, we went to bed. It was the most sleep I’d gotten in months, and I even had to wake up twice to do the small little detail that never crossed my mind until after my baby was born – pump.

I wouldn’t say I neglected to think about the fact that my baby would have to eat, but I neglected to think about the fact that in order for that to happen, a lot of other things had to happen. Two hours after giving birth, when a nurse came in and asked, “Are you ready to pump?” I was caught off guard and asked for another hour before beginning that journey. Of course it was a journey I would take. I’d always planned on breastfeeding, but why it had never crossed my mind that pumping was going to be such a major part of this stage, I have no idea.

I went from waking up once or twice a night to a blood gush rush to waking up twice a night to sit with my pump for 15 minutes. In the beginning, my feet were so swollen and I was in so much pain that I pumped upstairs with my feet in a bucket of cold water and put the milk in a cooler that my husband would bring down in the morning. I was still using a wheelchair at the hospital for crying out loud.

On the third, then, we made our first trip to the hospital together to see Oaklee. We’d gotten a call that morning notifying us of significant progress. Oaklee had been extubated around midnight. She no longer required the assistance of a vent, and was switched to a CPAP machine. No one anticipated this much progress this fast for the girl who was “the sickest of the sick” and potentially not going to make it.

We’d been warned that NICU time is usually like a rollercoaster, but so far, Oaklee had only moved onward and upward – and in significant ways.

While breathing issues were of the greatest concern for Oaklee, it’s worth noting that in this first week, we were dealing with other issues, potential threats and standard NICU/preemie things.

  • Oaklee had to be in the midline position (her head central) to reduce the risk of intraventricular hemorrhage (brain bleeds) for an entire week. After her second brain scan, we could turn her head as long as the results came back clear.
  • Above colostrum swabs, Oaklee received her nutrition in the form of TPN (Total Parenteral Nutrition) and lipids through an IV until her body learned how to digest as she was born before the gestational age in which this takes place.
  • With a body so small, Oaklee’s blood was tested daily and she was often given certain vitamins via IV depending on what she was lacking that day. More often than not, she was low in iron. Anemia is extremely common in preemies.
  • She spent a significant time receiving phototherapy under a bililight for jaundice – an indication that her liver was not working properly – also extremely common in preemies.
  • They monitored her pneumothorax with daily chest x-rays until it resolved on its own.
  • They monitored the PDA in her heart, with hopes that it would close on its own. PDAs are very common in low birth weight infants and, therefore, preemies.

In her first week, Oaklee had more x-rays and brain scans and medical tests than most people have in a lifetime.

And still, she was making significant progress.

Oscillator –> Ventilator –> CPAP

Onward and upward.

In the stats:
Birth weight: 2lb, 12 oz
Last known weight: 2lb 7 oz
Gestational Age: 28 weeks, 2 days
Days in the hospital: 5
Sets of visitors to see Oaklee: 8
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 1

Sponsor Oaklee's March of Dimes team.

Transfused

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

7.1.17

“Tonight marks my final night in the hospital after a 5 week and 2 day stay. Celebrating with fireworks, mock tails and kettle corn made it all too perfect. Such a bittersweet night as Oaklee takes my place as the patient. She’s a strong one. We love her so, so much.”

On the 30th, the day after Oaklee was born, I spent most of my day trapped in my room on the OB Special Care Floor. In the morning, I asked my nurse to remove my IV. I was so excited to finally be rid of my shackle, but the nurse was shocked I had not yet been notified of my pending transfusion.

My hemoglobin was a 6. 12-15 is normal for women (10-14 during pregnancy), but between the pregnancy and the cesarean, I’d lost so much blood. They ordered two units of blood and asked me when I wanted to sit through the transfusion. Not realizing quite how long it was going to take, I suggested we start right away to get it over with. I wanted to be done focusing on my own medical needs so I could focus on my daughter one building away.

Part way through unit one, my IV busted. While, sure, someone else’s blood was going into my veins, I panicked because someone else’s blood was dripping down my arm. I’m sure this is not true, but this was the first nurse I thought, in the moment, was unqualified. She wasn’t certain what to do about the busted IV or her panicking patient whom she’d just met for the first time that shift. My husband was over with our daughter and I hissed between my teeth into the phone, “Get. Back here.” The nurse slowed the flow of the blood, finished the unit, removed the busted IV and I faced my 7th IV start… post-partum. I was irate. After everything I’d been through, this put me over the edge.

I was disgusted. I was tired. I wanted to see my baby.

The report was that Oaklee was doing a bit better that morning. They’d bumped her down to 20-30% support on the oscillator, and the talk wasn’t revolved around whether or not she was going to survive so much as when could they give her less and less support.

After sitting six hours through my transfusion, I finally took a shower before two sets of Oaklee’s uncles and aunts came to visit. Again, we stared through the plexi-glass at her tiny, little body, her chest puffing a mile a minute from that oscillator. 2lb 12oz at birth, she was now on her way to her lowest known weight, 2lb 7oz. I watched as my husband changed his first diaper on a baby smaller than the baby dolls I played with as a child. Even this made me cry.

By the first of July, my final day as a patient, Oaklee made the switch to a conventional ventilator (see mechanical ventilator). Most parents panic if their child requires the assistance of a ventilator. We celebrated. She tolerated the switch well and, so long as she proved a vent was right for her, we would get to hold her soon.

After another aunt/uncle visit, we watched the Grand Rapids Independence Day fireworks I was counting down to from the corner room on the OB Special Care floor. We mixed virgin Moscow Mules and ate kettle corn, celebrating the end of my stay, but also not wanting to leave. Our friends were there. Our lives were there. Our baby was there.

A couple of our former nurses came in that night to say goodbye to us. Each one reminded me I did everything I could. Each one echoed every doctor we talked to along the way, telling me there was nothing I could have done differently. Deep down, I know these things are true, but throughout much of my pregnancy, it was as if my body and mind were two separate people. My body knew there was nothing I could have done differently, but my mind was so frustrated by the route my body was taking. Mentally, I could not fathom why my body allowed this to happen. It was better than that. I took good care of it. I took pride in it. And then I became pregnant and it didn’t do it right.

I will always believe my body failed me despite knowing that yes, there truly is nothing I could have done differently.

I will also always hurt a little bit when I see pictures of brand new, smiling, healthy families in the hospital – mommy, daddy, day old baby. I want that for everyone, I really do, but I also wanted it for me. Instead, I got two units of blood, another IV start, three days without a shower, two hospitals to navigate and, above the concern about my own health, the concern about the health of my brand new baby who wasn’t just kept in a different room, but a different hospital.

Still, I rejoice with those who have happy births. I want moms to be healthy and babies to be strong. I don’t ever want someone’s post-partum picture to look like mine.

Post Partum

(When talking with my husband, neither one of us knows why this picture was taken, but both of us look back at it and see how perfectly it sums up this day for us: Exhaustion. Transfusion. Pump. Unwashed hair. Phone nearby.)

In the stats: 
Days in the hospital (Mandi): 37
IV starts: 7 (14 IV pokes)

Gestational Age: 28 weeks
Days in the hospital: 3
Sets of visitors to see Oaklee: 5

Sponsor Oaklee's March of Dimes team.