My Christmas Letter… Again

I don’t know what 2019 holds, but this is where my re-telling ends. This is where we officially let Oaklee be Oaklee. Our story, these days, is not much different than the stories of other 18-month-olds… and that feels pretty good. 

Be sure to read through to the P.S. at the bottom!

12.31.17

“I think I’m just going to be a mommy now and enjoy this baby phase with Oaklee…”

Friends and family,

As I close out the re-telling of our 2017, I look back on 2018 and see so much love, so much joy and so much redemption. I feel so humbled by the way God has turned my story around. 2017 was hard and painful. 2018 was hard and beautiful. I became a mom in 2017. I embraced being a mom in 2018.

In 2017, I fought a 6 month breastfeeding battle through anger, tears and frustration, leaning heavily on my breastpump. In 2018, I breastfed my child – largely with ease – the entire year.

In 2017, I was confined to the greater Grand Rapids area due to bedrest, proximity to the hospital, and, eventually, having a smaller-than-usual baby at home. In 2018, my husband and I took that baby from sea to shining sea – from Portland, ME to Portland, OR – catching weekends in Illinois, New York and northern Michigan in between.

In 2017, my baby was seen daily by a doctor for 69 days before attending 22 appointments in the remaining 3 months of the year. Not once did she appear on the growth chart. Not once did she make any developmental achievement at or ahead of what her actual age would have suggested. In 2018, my baby attended a total of 20 appointments with various health professionals. She made her first appearance on the growth chart in early January, coming in at the 2nd percentile for weight, and closed out the year over the 30th. She developed at or above expectations and finished the year – like any other 18-month old – a walking, talking toddler.

In 2017, I began feeding other babies with excess breastmilk, an opportunity I’d never aspired to have, but one I was confronted with. I donated to Oaklee’s neighbor(s) in both places she’d lived – in the NICU and at home. In 2018, I donated even more milk to those babies, plus a friend-of-a-friend’s baby, donating a total of 4,000oz (31.25 gallons, to put that in perspective). While I hated almost everything that came along with having an over-abundant supply of breastmilk, I would do it again and again if it meant I would have the opportunity to help mommies/babies so substantially like I was able to over the course of these past 18 months.

In 2017, I was stretched, I was mad, I was frustrated, sad, blindsided, confused, scared, regretful, tired, hopeful, relieved, grateful, redeemed. In 2018, I was stretched, I was happy, I was joyful, busy, adventurous, grateful, love-filled, content.

I don’t know what 2019 holds, but this is where my re-telling ends. This is where we officially let Oaklee be Oaklee. Our story, these days, is not much different than the stories of other 18-month-olds… and that feels pretty good.

Merry Christmas and happy New Year!

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 10lb 8oz (12.1.17)
Adjusted age: 14 weeks, 1 day
Actual age: 26 weeks, 3 days
Days in the hospital: 69
Days home: 116
Appointments since home: 22

P.S. Thank you to those who’ve journeyed along with me through this re-telling! I do not have any concrete plans for where things will go next in this blog particularly, and will therefore take no offense should you choose to unfollow. There may be some radio silence for a while, but I will continue to post book reviews for those interested in what I’m reading, I will be fundraising for the March of Dimes again and will give updates as to progress there, and I will fill you in (eventually) on my next writing project – something I’ve dreamed about for years and am very excited to take steps toward in 2019!

Redemption

For every minute I sat alone with my pump, every time I washed the pump parts, every discomfort I felt in having an oversupply of breastmilk, every tear I cried through our breastfeeding battle, I found redemption in the opportunity to not only feed my child, but her NICU roommates as well.

12.29.17

“The most notable gift I gave this season was the gift of 1,836 ounces of breastmilk to the mom of the preemie twins who were in the same room as Oaklee in the NICU… I gave her over half of my freezer stock that’s left after having given 1000 oz to my neighbor, too. What a blessing it is to be able to be this blessing to another NICU mom. I don’t think I’ve ever given a better gift.”

For every minute I sat alone with my pump, every time I washed the pump parts, every discomfort I felt in having an oversupply of breastmilk, every tear I cried through our breastfeeding battle, I found redemption in the opportunity to not only feed my child, but her NICU roommates as well.

Over the course of Oaklee’s 69-day NICU stay, I was able to get to know a fellow NICU parent. In a room of eight isolettes, babies came and babies went, but two isolettes were occupied the entire time by twin girls born at roughly the same gestational age as Oaklee. Their mommy, L, and I would chat briefly as we passed each other in the halls or turned in our breast milk to the Nutrition room.

As we both prepared for the discharge of our kiddos, L mentioned the challenge it would be for her to maintain her pumping regime while adding the sole responsibility of feeding and caring for two babies on top of it.

L is a single mother. The twins are kiddos two and three for her. While, at the time, I did not know her story, I saw a great opportunity in what I did know to help Oaklee’s NICU roommates. On the day of Oaklee’s discharge, I left a note with L that included my phone number and told her of my overabundant supply of breastmilk. I urged her to reach out if/when she ran out of her own freezer stock once the girls came home.

Over the course of the next couple of months, I didn’t hear anything. Eventually, my freezer stock filled my deep freezer, my parent’s larger deep freezer and my parent’s upright freezer. I had an unruly supply of breastmilk – one I would never get all the way through, and one that was taking up more than my fair share of space in another person’s freezer.

With no way to get a hold of L, I reached out to my neighbor, whose son was born one day after Oaklee and had been on donor milk ever since. Over the course of two deliveries, I gave him 1000 oz of breastmilk, clearing out the upright freezer of my parents and dipping into their deep freezer.

Breastmilk is good for one year when stored in a deep freezer. Knowing I had more than I could use, I was aware I would need to donate more, and I would need to do it in a way that gave the receiver enough time to use it up before it expired. I didn’t know if L would reach out to me, and unfortunately, I couldn’t wait.

Similarly to how I’d decided the end of the year would be the end of the breastfeeding battle, I decided December 29 would be the cutoff for my waiting on L. On December 29, Oaklee would be 6 months old. My breastmilk would have a minimum expiration time of 6 months so long as I found someone to donate to quickly.

And on December 29, I received a text message from L, inquiring about the milk. In retrospect, I can see how many moments of our journey were clearly Divinely aligned, but this one was obvious from the moment I received that text message.

On the 29th, my husband and I made the trip in a blustery, winter storm to my parent’s house and retrieved from their deep freezer the milk I was willing to part with… and then more, before driving to L’s house to unload box upon box of bagged, frozen breastmilk. We filled her deep freezer and left boxes on the porch in the 8* night for her to bring to her parent’s deep freezer for future use.

I am a firm believer in giving when you have the opportunity to give. This particular giving opportunity may have been once-in-a-lifetime. I didn’t hesitate to give more than I felt comfortable giving. Oaklee was breastfeeding pretty comfortably. She was getting what she needed, and now, L’s baby girls could continue to get what they needed too.

L and I teared up. We hugged. We knew this moment was sacred.

Every minute I sat alone with my pump, every time I washed the pump parts, every discomfort I felt in having an oversupply of breastmilk, every tear I cried through our breastfeeding battle… it was all worth it. I would do it again and again if it meant babies – preemies especially – were being fed breastmilk they otherwise would not get.

On December 29, we completed the last stage of our 2017. In a time when most were looking ahead to resolutions, we had found resolution. Our baby was home. She was healthy. She was breastfeeding. She was sharing her mommy’s extra breastmilk with those in need – her own NICU roommates.

Good Pregnancy –> Bad Pregnancy –> NICU –> Breastfeeding Battle

Turning the page on this chapter in our life was so, so sweet. I will forever hold these dear, redemptive moments close to my heart, and while it took me an entire year to see the fruits of my detested labor, I feel incredibly blessed that God chose me to be a part of this story.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 10lb 8oz (12.1.17)
Adjusted age: 13 weeks, 6 days
Actual age: 26 weeks, 1 day
Days in the hospital: 69
Days home: 114
Appointments since home: 22

Merriest Christmas

By Christmas, we’d landed in a much better place. Still not on the growth chart, Oaklee was maintaining her own curve.

Let Oaklee be Oaklee.

Aside from the Haakaa breast pump, I was only pumping once or twice a day – only when Oaklee was taking a full feed (roughly 125ml; approximately 4.25oz) by bottle. In just under 6 months, we finally made it to the place I’d anticipated starting. Oaklee was an exclusive breastfeeder; I was a part-time working mama who could potentially only pump 6 times per week. This is what we fought for.

12.24.17

“I’m eerily aware of how different Christmas could be this year if things had not gone the way they did. Praise Jesus for saving our souls. And praise Him for saving our Oaklee’s life. We are blessed beyond words.”

If, at Thanksgiving, we were going headstrong into the breastfeeding battle, by Christmas, we were finally beginning to consider ourselves victorious.

Back in early December, we’d crossed into new territory, only giving Oaklee bottles when mommy wasn’t there to breastfeed. We had a lot of uncertainty as we took that approach. Oaklee’s growth was being tracked by her regular pediatrician, her neurodevelopmental pediatrician, an in-home nutritionist, an Early On interventionist, a WIC counselor, and an in-home nurse through a local Maternal Infant Health Program. We received every response on the spectrum to her size/growth from these people. Some, like Oaklee’s regular pediatrician, were un-phased by our decision. Others, like neuro, were initially forcefully suggesting we change our decision.

But by Christmas, we’d landed in a much better place. Still not on the growth chart, Oaklee was maintaining her own curve.

Let Oaklee be Oaklee.

Aside from the Haakaa breast pump, I was only pumping once or twice a day – only when Oaklee was taking a full feed (roughly 125ml; approximately 4.25oz) by bottle. In just under 6 months, we finally made it to the place I’d anticipated starting. Oaklee was an exclusive breastfeeder; I was a part-time working mama who could potentially only pump 6 times per week. This is what we fought for.

A lot of moms don’t nurse to 6 months. Many don’t nurse at all. But at 6 months, I was just getting into the groove of things. At 6 months, I was at the beginning I’d expected. At 6 months, Oaklee and I could finally bond during feedings instead of simultaneously cry at attempts. At 6 months, it was beautiful.

Our greatest gift this year came in June. Our most joyful moment came in September. And our hearts were the merriest at Christmas.

We were blessed to have won the breastfeeding battle. We were blessed to have celebrated Christmas with our daughter at all.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 10lb 8oz (12.1.17)
Adjusted age: 13 weeks, 1 day
Actual age: 25 weeks, 3 days
Days in the hospital: 69
Days home: 110
Appointments since home: 21

Hail to the Victor?

We’d come leaps and bounds in nursing since Thanksgiving. I’d made the commitment to be done with the battle by the end of the year, whatever that looked like. And then I charged forward, trying any new thing to get Oaklee to nurse better. 

I can’t say which one thing it was that helped us turn a corner. In retrospect, my husband and I are shocked by the determination I had, and often attribute the progress to that. However, I’d been determined for almost 6 months – if that were all we needed, it seemed like things would have changed earlier.

12.11.17

“There will always be a part of me that’s incredibly anxious about my desire to nurse Oaklee potentially holding her back.”

We’d come leaps and bounds in nursing since Thanksgiving. I’d made the commitment to be done with the battle by the end of the year, whatever that looked like. And then I charged forward, trying any new thing to get Oaklee to nurse better.

I can’t say which one thing it was that helped us turn a corner. In retrospect, my husband and I are shocked by the determination I had, and often attribute the progress to that. However, I’d been determined for almost 6 months – if that were all we needed, it seemed like things would have changed earlier.

Since Thanksgiving, I’d trudged through the following attempts to take steps toward winning the breastfeeding battle:

1 – For several days, I fed Oaklee more frequently, allowing her to eat smaller amounts more often. We’d been so used to feeding her every three hours – the hospital “care time” approach – that the idea of feeding her sooner never really occurred to us. When taking bottles, Oaklee could take a full feed easily and last another three hours before needing to eat again. When nursing, she got tired faster and we’d try to finish up that feed with a bottle and get her to make it another three hours before feeding her again.

2 – I wore Oaklee. I wore Oaklee a lot. I bought a Qaqadu baby wrap (the off-brand of the more familiar Boba Baby Wrap) and kept Oaklee on me as much as possible – ideally skin-to-skin. Some mommies will nurse their child while wearing him/her, but I was simply wearing Oaklee to get her as comfortable as possible on my chest.

3 – I used a Haakaa breast pumpThis was huge for us. A large part of our problem in getting Oaklee to breastfeed was that Oaklee was small and my supply was fast and furious. She could comfortably nurse for approximately 1 minute and 15 seconds before being blasted with the letdown and essentially drowning in breastmilk. This didn’t exactly make her excited to latch on again and proceed.

The Haakaa was a win/win. Every time I nursed, I would wear it on one side while nursing Oaklee on the other. I would pull Oaklee off at 1 minute and 15 seconds, covering her side with a burp cloth until the letdown was past, while letting the Haakaa catch it on the other side. I would then re-latch Oaklee, who could handle the post-letdown flow much easier. By the time she needed to switch to the other side, the Haakaa had removed – and salvaged – the faster flowing breastmilk and Oaklee could nurse with ease. My 3-4oz caught in the Haakaa then went into my ever-growing freezer stash of breastmilk.

4 – I had Oaklee checked for a tongue/lip tie. In my desperation, I really hoped there was an easy answer like, “Oh wow, look at that lip tie! Just a quick snip and you’ll be nursing like a pro.” However, upon taking Oaklee to a pediatric dentist to be examined for any ties, the dentist confirmed a small tie – not one that would obviously warrant feeding issues. She left the decision – to snip or not to snip – up to me, and I decided my baby had been poked and prodded enough in her 23.5 weeks of life. So both fortunately and unfortunately for us, this was not the answer.

5 – I gave Oaklee enough time to grow. I hate that this is what it largely took. And I hate telling people the very thing people told me, “She’s just too small. Give it time.” If you’re not a pumping/breastfeeding new mom, I don’t think you should be allowed to say those words to a pumping/breastfeeding new mom. You have to be in the trenches. You have to have the credentials. Because any time someone told me Oaklee was just too small, I wanted to hiss at them, “Then what do you suggest I do in the mean time? Would you like to pump 10-15 minutes 8 times a day including in the middle of the night and then give your baby bottles on top of that and also do things like generally take care of your baby?”

But when it came down to it… Oaklee was just too small. I had to give it time. Up to this point, we’d been asking her to do things she was too young to do her entire life. “I know you weren’t planning on doing this for another 12.5 weeks, but just breathe, Oaklee. Use your lungs…”

6 – For four days, I nursed every feeding but four. My husband was out of town for work. During that time I threw caution to the wind and gave Oaklee one bottle per day, and nursed her every other feeding. She nursed anywhere from 5 to 17.5 minutes in those feedings and I prayed every time it was enough. “If she were hungry, she’d let me know,” I told myself, but deep down I questioned even that basic logic.

By December 11, it looked like maybe I could win the breastfeeding battle. I was still incredibly unconfident that I was doing the right thing. Was it selfish to put my daughter’s health on the line for the sake of simply eliminating the pump I hated? Was I being a poor mother at the expense of trying to be an excellent breastfeeder? I had 20 days to flip my lack of confidence to confidence. I knew I wanted Oaklee to have breastmilk. I didn’t know how much longer I could deal with the pump.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 10lb 8oz (12.1.17)
Adjusted age: 11 weeks, 2 days
Actual age: 23 weeks, 4 days
Days in the hospital: 69
Days home: 97
Appointments since home: 19

The Return to Neuro

When the nurse practitioner entered the room, she immediately began by telling us Oaklee’s growth wasn’t terrible. While she was still not on the growth charts, she had picked up a bit of speed, making an encouraging curve. She looked me in the eye as she questioned, “I’m guessing you chose not to do the formula, right?”

12.1.17

“We finally nurse enough during the day that I don’t also pump… While I want to say it’s a relief to be at this point, I have to admit that I’m still a nervous wreck about it. Is she getting enough to eat? Will I still produce enough if I don’t pump? It’s so stressful.”

56 days after Oaklee’s first Neurodevelopmental Pediatrician appointment, the one where a doctor told me I would never nurse a child, Oaklee and I returned to that office for a follow-up appointment. We were still attempting to make Oaklee an exclusively breastfed baby and had daddy in tow for backup.

The nurse took Oaklee’s measurements. She weighed 10lb, 8oz. That was 2lb, 9oz more than when she’d last seen them. Each time a nurse or doctor made me strip Oaklee down to a clean diaper to be weighed, I’d hold my breath, but this time I was especially anxious. I wanted to come in with a solid argument that we were doing the right thing, but I knew the numbers would tell the truth, and I wasn’t certain what numbers they would be looking for exactly.

When the nurse practitioner entered the room, she immediately began by telling us Oaklee’s growth “wasn’t terrible”. While she was still not on the growth charts, she had picked up a bit of speed, making an encouraging curve. She looked me in the eye as she questioned, “I’m guessing you chose not to do the formula, right?”

With practiced confidence I said, “Correct.”

She responded, “I think that’s going to be ok.”

Then the nurse practitioner baited another hook and went on to explain the special, higher caloric formula does have certain, additional nutrients preemies are often deficient of. We could check Oaklee for deficiencies with a simple blood test if we would consider supplementing with the formula pending low results.

I can see how this would sound crazy to some people, but I kept my foot down. Did I want to know if Oaklee was deficient? Of course. The nurse practitioner cast out a line, and I was thinking about nibbling, but I wasn’t going to budge on the formula and, therefore, not willing to subject Oaklee to another poke.

Even if my daughter was low in certain nutrients, I was not supplementing man-made formula for the milk God made in my body for my daughter.*

Oaklee was growing. She was developmentally right where they wanted her to be. Ideally, her continued growth would allow her to maintain that developmental track. With the progress she’d made so far, and the supply and passion I had to breastfeed, we officially denied an interventional option – finally.

Let Oaklee be Oaklee… the seeds of my newest mantra were being planted.

We left that neuro appointment on a much brighter note than the last one. Still uncertain we were making the right decision, we at least knew the nurse practitioner was ok with our decision.

On the 1st, Oaklee breastfed two feedings of seven – 15 minutes and 14 minutes – two almost full feeds.

We could do this.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 10lb 8oz (12.1.17)
Adjusted age: 9 weeks, 6 days
Actual age: 22 weeks, 1 day
Days in the hospital: 69
Days home: 87
Appointments since home: 15

*P.S. I have to make the note that I think formula is a very valid option in many, MANY cases. For the baby who won’t latch, for the mom who can’t produce enough milk, for the single mom, for the mom of twins, for the mom of the preemie who’s just not getting the whole breastfeeding thing, for the mom who’s struggling to take care of herself… formula is a blessing. Nothing is better for baby than for mom to be her best version of a mom, and often that means using formula.

I know I am blessed to have even fought the breastfeeding battle – to have been given the time to work through it, to have been given the supply to more than feed my child, to have been supported by my family and friends, to have been given a husband who will wash pump parts, give bottles and sit on the floor of the nursery in support, watching me cry as I try to unsuccessfully breastfeed our child – I have been incredibly blessed.

But the shame around using formula saddens me. You can be an excellent breastfeeder and a terrible mother.

The Thanksgiving Commitment

On Thanksgiving, I finally acknowledged there had to be a definitive end point to the breastfeeding battle. I simply could not go on in the phase I was in for the sake of my mental health and my relationships with my baby and my husband. Knowing my current process was not working, I had three alternative options…

11.23.17

“This is not how motherhood is supposed to go. I’ve pleaded with God for the life of my child before she was even born because I knew the fight she would face, and I didn’t know if she could win. I never allowed myself to believe we’d be going home without a baby, but that possibility was a reality we prayed against time and time again.

“So now, here I am, complaining about feedings when her life was spared for moments such as these. Some day, we’ll be past this phase. We’ll laugh about how chronically Oaklee spit and how stressed we were about her weight gain. We’ll face different stresses – ones that feel more pressing than these. But wow, is this current phase hard. I had no idea that having a preemie would play out like this. Her prematurity defines her for far longer than I’d imagine for a kiddo who seems rather normal. “

Thanksgiving 2017 – we had so much to be thankful for. In a year where we feared we might lose our baby, we got to snuggle her tight on Thanksgiving amongst our families and in our own home. We were immensely blessed, and we knew it, but the dark clouds of the breastfeeding battle were low and relentless. It was a storm we couldn’t see past, and so we made the Thanksgiving Commitment.

On Thanksgiving, I finally acknowledged there had to be a definitive end point to the breastfeeding battle. I simply could not go on in the phase I was in for the sake of my mental health and my relationships with my baby and my husband. Knowing my current process was not working, I had three alternative options:

  1. Quit – allow myself to dry up and use up the milk I’d stored up in our freezer to get Oaklee through the flu season.
  2. Exclusively pump – the route I’d technically already been taking but so deeply dreaded committing to.
  3. Pursue breastfeeding like it’s our only option.

While everything inside of me wanted to take option 1 and avoid option 2, I headed toward option 3. On Thanksgiving, I nursed Oaklee every two hours instead of every three hours, giving her six opportunities of nine total feedings to learn, to bond, to eat without the pressure of needing to not fall asleep before getting full because she could eat again in two hours. In a day that was full of family and food, I slipped out of the room every two hours to try again and again and again.

In the six breastfeeding attempts, she nursed anywhere from 4.5 to 13.5 minutes at a time, for a total of 52 minutes. Not everyone breaks down their baby’s nursing habits mathematically. In fact, I’m not certain I know of anyone else who has done that, but literally every feeding of Oaklee’s since birth had been tracked and charted and calculated and analyzed. We knew the number of minutes or milliliters necessary to get the results the doctors wanted to see.

So let me put it this way:

In a span of time where Oaklee should have eaten four times, I fed her six times. If you divide the 52 minutes by four feedings, rather than the six we actually did, she was doing approximately 13 minute feeds. Per the NICU suggestion, 15 minute feeds were considered full feeds. We were significantly closer than we were even two weeks ago by feeding more frequently for less breastmilk as opposed to less frequently for more breastmilk.

It seemed as though this may be a glimpse into what the issue actually was. Was Oaklee hungry enough to eat the amount she needed to eat? Absolutely. But breastfeeding is hard for the baby too, and especially one who’s known more bottles than breast and is still the size of a newborn despite being five months old. She simply couldn’t eat until she was full because she was too small, too tired, too premature.

On Thanksgiving, I committed to taking new steps – feeding Oaklee more frequently, wearing her more often, and dealing with my firehose letdown so she didn’t have to take it – to get Oaklee to be a breastfeeder by the end of the year. And if that didn’t happen, that would be the end. That was the commitment part. I had to commit to giving up if that was going to be best for us – if that was going to help me be a better mom, a better wife, and a better person.

There was an end goal in sight. An end that would either mean no more breastfeeding attempts or pumping – or – no more fruitless breastfeeding attempts. Which would surface, only time would tell.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 9lb 11oz (11.9.17)
Adjusted age: 5 weeks, 5 days
Actual age: 21 weeks
Days in the hospital: 69
Days home: 79
Appointments since home: 14

Too Premature

I wanted to roll over in the middle of the night, pick up my hungry baby, breastfeed her and set her back down to sleep. Instead, I was going downstairs, pumping, washing pump parts, storing breastmilk, heating a bottle, waking my sleeping baby and giving her a bottle. There are tons of women who do this, some even do it by choice, but it is not what I wanted. 

11.12.17

“Sometimes nursing is a dream, sometimes it’s an absolute nightmare. Oaklee and I have cried many tears over it. I just want it to work out, but at what point do I admit to myself that it’s not in the cards for us? I haven’t done so yet because I just can’t fathom exclusively pumping… Apparently I believe in the benefits of breastmilk enough to let all of this thoroughly piss me off for however long this takes.”

I never knew how important it was to me to breastfeed until my hungry baby was crying, I was crying and I was making my husband sit silently on the floor of the nursery for “emotional support”… several times every day of the week. For as long as things had been going an other way, I just couldn’t see it any other way. I have breastmilk. My baby needs breastmilk.

A+B=C

For four and a half months, I’d largely been exclusively pumping but I just had it set in my mind that I was going to breastfeed Oaklee and couldn’t fathom only ever pumping. It was yet another checkpoint where I was being dealt a hand I didn’t want to play and yet another reminder that prematurity doesn’t end. It doesn’t end when your baby finally breathes on her own. It doesn’t end when she takes her first full bottle. It doesn’t end when she’s discharged from the hospital. It doesn’t end the first time she rolls over…

I wanted to roll over in the middle of the night, pick up my hungry baby, breastfeed her and set her back down to sleep. Instead, I was going downstairs, pumping, washing pump parts, storing breastmilk, heating a bottle, waking my sleeping baby and giving her a bottle. There are tons of women who do this, some even do it by choice, but it is not what I wanted.

We were warned of the possible growth and developmental delays Oaklee may face, but to see them play out in such a necessity as feeding post-discharge was heart breaking. Several people told me to, “Just give it time. She’s just too small,” but you’re not allowed to be too small to eat. It had to happen one way or another, and I was banging my head against a wall over that other way.

Pump. Wash the pump parts. Measure a bottle. Give a bottle. Wash the bottle. Pump. Wash the pump parts. Measure a bottle. Give a bottle. Wash the bottle… and then sometimes she would spit up entire feeds, rendering the cycle moot and adding the steps of change the clothes, wash the clothes.

She was too small. Her digestive system was too weak. She was too premature.

On November 12, we were offering 120 ml (approximately four ounces) bottles and Oaklee nursed a total of 28.5 minutes, split between four breastfeeding attempts of eight total feedings. We had still made very little progress toward getting Oaklee to be a true breast-fed baby. And we still didn’t know if that would ever happen.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 9lb 11oz (11.9.17)
Adjusted age: 7 weeks, 1 day
Actual age: 20 weeks, 3 days
Days in the hospital: 69
Days home: 68
Appointments since home: 13

Maternity Left

After 10 months, we could clearly say 2017 was a year of disrupted plans. Our pregnancy went wonky, we cancelled vacations, I moved into the hospital, our baby came three months early, we had to wait 69 days to take her home, I delayed my maternity leave until she did come home, and then we were faced with the decision to proceed as planned or to make some significant, longer term changes in order to best accommodate the cards we were dealt.

10.29.17

“Life sure has changed. It’s A LOT for one year… this has been both the best and worst year of my life.”

After 10 months, we could clearly say 2017 was a year of disrupted plans. Our pregnancy went wonky, we cancelled vacations, I moved into the hospital, our baby came three months early, we had to wait 69 days to take her home, I delayed my maternity leave until she did come home, and then we were faced with the decision to proceed as planned or to make some significant, longer term changes in order to best accommodate the cards we were dealt.

For most of my working days, I’d split my time between two part time jobs, largely in the non-profit world. When we were first expecting Oaklee, our plan was clear. I would quit one of my two jobs – the one that paid less and required a commute – and stay with the non-profit around the corner from my house, working three days each week. Oaklee would be babysat by my mother and my husband’s mother. We had it all figured out.

But then as I began planning for my return to work, God began opening and closing doors. I was approached by the national organization of the local affiliate I had planned on returning to. They knew of our situation and offered me a 12 hour/week position to work from home, suggesting I could achieve all of my goals with this offer – staying home two days with Oaklee and keeping my three days with my local affiliate. My gut reaction was to close that door, but instead, God closed another one for me.

When negotiating my work/babysitting schedule, things did not align due to the pre-established babysitting days of Oaklee’s grandmas and the requirements of my employer. I turned back to the national organization and dreamed with them where this position could go. They upped the offer to 15 hours/week with a slight increase in pay. It was still a step down for me, a cut in hours and a cut in pay from what I had planned. I would not be advancing my career in any way by taking this position, but I would be focusing on the current needs of my family.

I put in my two weeks notice to my local affiliate and never returned from my maternity leave. I maternity left.

Instead, I began a new job, easing in the week of the 22nd with just eight hours of training and starting my first “full week” the week of the 29th. Amidst all of the “different” and “new”, I managed to sneak in a job change, too. Every day I woke up, I did not know what I was doing during any portion of my day – whether working or taking care of my first child, my preemie.

Every part of my life had changed.

On the 29th, I also wrote,

“I’m ready to actually do this phase instead of flying through constantly changing phases… Though I guess I have to figure out how to do this phase first.”

While learning new programs and processes at work, I was also still ears deep in the breastfeeding battle. I was only attempting to breastfeed two to three of seven or eight feedings each day so Oaklee had the opportunity to continue gaining weight at an adequate rate through her bottle feeds. On the 29th, Oaklee breastfed a total of 26 minutes. This was significantly better than the days I saw 6-12 minutes, of course, but not enough to convince me she could really do this.

I just kept trying.

In every part of my life, I just kept trying.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 7lb 15oz (10.6.17)
Adjusted age: 5 weeks, 1 day
Actual age: 17 weeks, 3 days
Days in the hospital: 69
Days home: 54
Appointments since home: 9

Never Have I Ever

The nurse practitioner did a basic assessment of Oaklee’s development and size and immediately suggested we put Oaklee on a high calorie infant formula, adding, “I can write you a prescription, so it would be free,” as if the cost would be the only thing that might have held us back and not the overabundant flow of breastmilk I produced, or my natural maternal desire to breastfeed, or, you know, the fact that I was sick of intervening with God’s plan.

10.7.17

“I think at some point we have to stop assuming our man-made things are better than those God intended.”

Early October saw a different type of challenging times for us. While navigating a potential job change amidst my maternity leave, we also made our first trip back to visit the Helen DeVos Children’s Hospital Neurodevelopmental team. Upon discharge, we were told this team would be following Oaklee’s progress for approximately three years as they, “promote the growth and development of infants and toddlers affected by developmental delays.”

It was not yet made clear whether or not Oaklee was, indeed, affected by a developmental delay other than the obvious. She was born 3 months early. This is where her actual and adjusted ages come into play. She might actually be 14 weeks and 2 days old, but, from her due date, she was an adjusted 2 week old baby, and tracking developmentally as so. In these first three years, that 3 month developmental delay would be allowed.

However, weight-wise she would be tracked based on her actual age. (There is no such thing as an adjusted weight.) Therefore, coming in at 7lb and 15oz at her Neurodevelopmental appointment, Oaklee was nowhere near making her appearance on the growth chart. In the realms of percentiles, how many babies weigh more or less than her, she wasn’t even in the first percentile. We were, essentially, being told 99.99% of babies her age weighed more than her, and this was a problem. The average 14 week old girl, one in the 50th percentile, would weigh 13lb 2oz.

It was no shock to us that Oaklee weighed significantly less than average. She’d already gained 5 pounds in her 14 weeks. We’d seen her so much smaller than she was now. However, it was a bit of a shock that it was considered a problem that she was not the size of a 14 week old baby.

During her Neurodevelopmental appointment, three people saw Oaklee.

The first was a nurse. She took vitals and measurements.

The second was a nurse practitioner. She did a basic assessment of Oaklee’s development and size and immediately suggested we put Oaklee on a high calorie infant formula, adding, “I can write you a prescription, so it would be free,” as if the cost would be the only thing that might have held us back and not the overabundant flow of breastmilk I produced, or my natural maternal desire to breastfeed, or, you know, the fact that I was sick of intervening with God’s plan.

The third person in the room was a man – I assume a doctor – one of whom I haven’t seen in our appointments since. He was in the room for less than five minutes, but managed to utter the phrase that pushed me over the emotional edge, “I’m sorry that you’ll never get to breastfeed a baby.”

My inner dialogue went rampant.

Because Oaklee is too small, I’ll never get to breastfeed her? Because Oaklee is too small, I’ll never get to breastfeed any of my babies? So, what? I’m only ever going to have preemies? Did you just condemn me to eternal premature babies? Do you even know the amount of work I’ve put in with my pump these past 14 weeks? Do you know that I’ve filled a deep freezer with breastmilk and started filling a second? Do you actually think I’m going to just pitch that breastmilk and take your free formula?

I was livid.

And then the man left the room and the nurse practitioner wrote Oaklee a prescription for a high calorie infant formula and we were on our merry fricken way.

Tears slipped out of my eyes on my way to the parking garage, the one we’d parked in every day for 69 days when visiting Oaklee in the hospital.

When… when do things get to be normal?

We had done our time. We had taken the unconventional route. We had let doctors intervene to save our child’s life and to get her to a point where we could take her home. But at what point does she just get to be a baby and not a preemie? At what point do we just get to be new parents and not Oaklee’s scientists, physical therapists, occupational therapists, etc.? At what point do we trust God’s miracle of life without taking another man-made jab at it?

My gut (or my maternal instinct) told me to continue the breastfeeding battle. My husband told me he was fine with that as well.

I threw the prescription away.

On the 6th, the day of the appointment, I didn’t nurse Oaklee once. I was heartbroken. On the 7th, I nursed her twice, for a grand total of 11 minutes. We were nowhere near 15 minute feeds.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 7lb 15oz (10.6.17)
Adjusted age: 2 weeks
Actual age: 14 weeks, 2 days
Days in the hospital: 69
Days home: 32
Appointments since home: 6

Due Date

By the time we got to that September due date, Oaklee had been in the hospital for 69 days and home for 18 days. She’d grown heaps since being home. She weighed about 7.5 lb – which seemed huge to us considering she started at almost a third of that weight. While we were still frantic and trying to figure out how to take care of a baby, let alone, a long term NICU graduate, Oaklee was doing great. 

In these first weeks at home, I largely spent my time pumping, washing pump parts, sorting ounces of breast milk, mixing bottles, giving bottles and cleaning bottles. We were at the beginning of our bottle-to-breast journey and I was already getting burned out.

9.23.17

“We thought this day would be so different. Maybe we’d have a newborn. Maybe I’d be 40 weeks pregnant. Instead, we’re praising God for our 12 week and 2 day old sweet little miracle. Happy due date baby girl.”

I loved the idea of a September baby. Back on January 16, everything felt cookie cutter perfect. It was a new year, our lives were on a new track, we’d have one last summer to go wherever and do whatever we please, and by the holidays, we would have a newborn to dote on.

But by April 7, we knew we were on a different trajectory. We stopped looking forward to September and started praying for at least August, eventually even just July. And then at the end of June, Oaklee graced us with her minuscule appearance, 12 weeks and 2 days early.

By the time we got to that September due date, Oaklee had been in the hospital for 69 days and home for 18 days. She’d grown heaps since being home. She weighed about 7.5 lb – which seemed huge to us considering she started at almost a third of that weight. While we were still frantic and trying to figure out how to take care of a baby, let alone, a long term NICU graduate, Oaklee was doing great.

In these first weeks at home, I largely spent my time pumping, washing pump parts, sorting ounces of breast milk, mixing bottles, giving bottles and cleaning bottles. We were at the beginning of our bottle-to-breast journey and I was already getting burned out.

“I so badly wish I could cut pumping out of the equation. It requires extra gear and extra time, but I want so badly to nurse Oaklee, so it’s a must until we meet in the middle. I’m trying to navigate that change, but it’s hard. I want to know she’s getting well fed and not play this guessing game.”

At this point I was letting Oaklee try to nurse one time per day. Stop watch in hand, I’d time her and record how many minutes she was successfully breast feeding. She generally ranged anywhere from 5 to 15 minutes. Upon NICU graduation, we were advised to follow a breastfeeding sliding scale. If Oaklee nursed 0-8 minutes, we were to offer a full bottle after nursing. If she nursed 8-15 minutes, we were to offer a half bottle after nursing. If she nurses 15 or more minutes, we could consider it a full feeding and skip the bottle.

15 minute nursing sessions were rare, but when they happened, I cried. When they didn’t happen, I also cried.

When I didn’t try to nurse, Oaklee was getting precisely measured 80 ml (approximately 2.5 oz) bottles of breast milk mixed with Human Milk Fortifier (HMF) for additional calories/nutrients. We would gradually increase this number as we felt she could take more, constantly encouraging her to eat more, gain more weight and grow faster. The pressure for more, more, more was very real.

Yes, she’d been discharged, but on the condition that we’d push her hard, if not harder than the NICU had pushed her. We had to prove she could thrive to the several doctors and nurses who would be following her post NICU.

Eat. Gain. Grow.

No, she wasn’t a feeder grower anymore, she was just a baby, but one who’d been asked to do things for the past 12 weeks and 2 days that she wasn’t supposed to do until today.

Just focusing on growing was a colossal task in itself, but 12 weeks and 2 days ago the focus was merely on living and Oaklee achieved that, so…

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 6lb 9oz (9.5.17)
Gestational age: 40 weeks
Actual age: 12 weeks, 2 days
Days in the hospital: 69
Days home: 18
Appointments since home: 2