Friday, May 31, 2019

Breast May Not Be Best

Going into this pregnancy, I knew that I really wanted to try to breastfeed. Every woman I personally know who has breastfed says it's incredibly hard and quite painful, especially at first. Most of them also say it's rewarding if you can make it through. Plenty of women on the internet seem to claim that pain is a sign 'you're doing it wrong', but I call B.S. on that!

So, we gave it a shot.

Due to their prematurity, the babies couldn't breastfeed, even attempt it, until about 33 weeks, so I pumped at first. At around 33.5 weeks, T started showing signs of cuing, so we tried breastfeeding. I was still in intense pain from my digestive system, especially when sitting upright, which complicated matters.

At the recommendation of the lactation consultant, I used a nipple shield. The process to breastfeed was awful. First a nurse would weigh the baby. I'd grit my teeth against the pain and sit upright. Using both hands, I'd place the nipple shield to draw my inverted nipples into it, then hand express milk into it. Once I was ready, I'd be passed the baby with all their monitoring wires attached. At that point, I'd try to get them to latch. T would latch then scream, twist her head back and forth, and tear the shield off my breast. That would send the expressed milk spilling down my front/bra, and I'd have to replace the shield and hand express more milk one handed, while holding her with the other. Not easy. Eventually she'd start sucking, but always after chomping down on my nipples at least once. Who knew gums could hurt so much? A would latch, then lay there looking up at me and never suck.

Those internet women who say breastfeeding shouldn't be painful? They often say you need the baby to have a wide latch. "Get the areola fully in the baby's mouth." Yeah, right. You try managing that while trying to hold on a nipple shield and working with a preemie whose mouth is the size of a dime!

Once we'd spent 15-20 minutes at this, the nurse would take her back and re-weigh her. One of the most crushing moments of our entire 8 week hospital stay was when they took her back, by which point I was shaking with pain from sitting upright, and told me she'd LOST a gram. Let me tell you, it's brutal to do something that hurts so badly, feel like you're torturing your child the entire time due to the screaming, and then find out you accomplished worse than nothing!

Over the course of 8 weeks, the best we ever transferred was 27 mls, which was half of the needed amount at the time. Since I needed to empty my breasts to keep building my supply, that meant I still needed to pump. Given my pain level from sitting up, eventually I started to prioritize pumping over attempting to breastfeed.

Pumping has been nearly as tough, although I can happily report that my pump doesn't ever scream at me when I put it to breast! My supply has hovered at 50-66% of what the babies need, despite everything I've tried to increase it. I power pumped for days on end. I tried pumping every 2 hours around the clock for 4 straight days. I tried drinking more, sleeping more, sleeping less. Hell, I even tried coconut water! No increase. I suspect this is partially due to all the retained placenta I had, but the surgery to remove it hasn't done much to increase my supply, so who knows?

I also have a great deal of nipple pain. Unless I'm in a hot shower or under a heating pad, my nipples constantly feel like they're being stabbed by needles. They often turn white or purple. My OB suspects that this is due to my Raynaud's syndrome, which apparently impacts breast tissue and not just hands and feet. WTF, body? Can you do nothing helpful? Apparently the answer is no.

I have a goal of 6 months of pumping. We all know I'm stubborn, so we'll see if I make it or not.

Tuesday, May 28, 2019

Scheduling my Breakdown

I've talked about NICU logistics. That's ignored the elephant in the room, tho: NICU emotions. Every single day we were in the hospital, each time I would lay down in my hospital bed to get a few minutes of sleep, I would think to myself that I wanted nothing more than to start sobbing and just break down for a while. And each time that happened, I would tell myself that it would be OK to cry, OK to let it all out, but not just yet. I'd tell myself I just needed to wait a bit longer. I told myself I could schedule my breakdown for sometime when we were out of the NICU.

Why did I need that outlet so much? Why did I want to sob so badly, night after night for weeks? Well, my life long habit is to do a quick mental evaluation of how things are going before sleep each day. During the NICU stay, the answer was that every single thing related to my pregnancy, to my delivery, to the babies, and to my recovery was not what I'd hoped for, except for the most critical thing: my babies were alive and would someday come home.

It feels awful to complain about how 'bad' things were, when I knew A and T would be ok. Yet, the pregnancy was completely awful, as was what followed. I didn't get to hold my daughter for nearly a week. I didn't get to hold my son for nearly 24 hours. I was in so much pain that the thing I wanted most in life at that moment - to be with my babies constantly - was impossible. I didn't get to keep my babies safe. I had to watch them struggle and have medical interventions that were heartbreaking to see. Breastfeeding was a dud. I wasn't going to get to go home from the hospital with both my children. I had to introduce them to their grandparents amidst proof of flu shots and vats of hand sanitizer. Everything I might have hoped for, I didn't get. Except that they were alive. And that's really the crux, isn't it? I'd have given up any of those earlier hopes to have kept Alexis, Zoe, or Quinn alive. Thus, I was conflicted in the emotional pain I was feeling. Heck, I *still* am conflicted in the emotional pain I'm feeling.

The babies are 13 weeks now, and I  no longer feel like sobbing due to dashed hopes. I might feel like sobbing due to lack of sleep, but that's somehow relieving as that's "normal". Someday I'll try to work through these emotions, but for this moment, I'll enjoy the snuggles and the everyday moments with my kids and be beyond thankful that we're all home safe together.

Sunday, May 26, 2019

NICU - A Long Post for a Long Journey!

The NICU was definitely an experience. For my own memory, and for the sake of anyone else wondering, I thought I'd share our experiences. Forgive the length! 

I delivered at a hospital that takes babies 30 weeks and older. It's part of the U of M system of doctors, so we saw the same neonatologists and MFMs we'd have seen at the U, but with a much smaller NICU for overall healthier babies. 

The general set-up of this NICU was a series of bays with 5 "beds" right outside the nursing station for the most critical babies. Any baby on oxygen would be found there. Beyond that, there was a single twin room, five rooms with dividers and two beds each, and on isolation room, for a total of 18 beds. When things got too busy/full, all the twins on the unit were crammed together in single rooms, so for a while Aaron was 'bed 20'! Our NICU was on the same floor as L&D and the OB surgical suites. The family unit was two floors up. 

Our NICU always had an NP on duty, along with a charge nurse and floor nurses. We were visited by OT 5 days a week for the first 5 weeks. Nutrition did consults about formula and TPN. Respiratory therapy was only involved when the babies were on oxygen. At delivery, the NP, charge nurse, respiratory therapist and a floor nurse were present for each baby and evaluated and whisked them off to the two most critical beds right in front of all the nurses. There's a photo of that below. DH mostly stayed with the babies, but came back to check on me once I was in recovery.  Once I was stable enough to be moved to the family care unit, they wheeled my hospital bed past the twins' bay, and I could see a tiny bit of them, all wrapped up with their CPAP and their IVs.

The first day I wasn't in too much pain, but kept vomiting from the dilaudid so I couldn't go visit them until evening. When I did, I was able to do skin to skin with A, which was unbelievably amazing. 

Both had slightly higher oxygen needs than were being met. The Dr. ordered surfactant treatment for their lungs to see if their oxygen needs could be reduced. Baby boy A responded well, but baby girl T didn't. They tried a second round for her, however by the 26th, they had to place her on the vent, and place a central line so they could draw more frequent blood gas readings without having to do heel sticks. Because she was more fragile and because she was on the vent, we couldn't hold her. In fact, they told us we should only gently place a still hand on her in her incubator, and not yet try to stroke her. Further complicating matters, by the 26th, I was in so much pain from my digestive system that I couldn't tolerate the wheelchair ride downstairs or sitting up in the babies' bay for more than a few minutes, meaning I only saw them once that day. 

During this early stage, the babies were being 'fed' custom mixed TPN via IV. I was pumping every 3 hours round the clock, and the babies were getting 'oral care' of q-tips with colostrum on them being placed in their mouths by DH and the nurses. There was one nurse assigned to each. 

By March 1, Tess was able to come back off the vent to CPAP. DH was able to hold her for the first time, as I was in too much pain to make another trip downstairs after having held Aaron earlier in the day. Aaron was off CPAP and onto nasal cannula with room air. By the 2nd, he was off even that! They started to receive donor breast milk via NG tube, to supplement the little I was producing (much more on that for a later post). 

I had been discharged from the hospital by the 27th. Because I was in so much pain, the car ride to and from the hospital was inconceivable, and the bays where the babies were only had rocking chairs, which I couldn't tolerate sitting up in for more than 20-30 minutes. While the hospital doesn't have any boarding rooms for NICU parents, in extreme circumstances, they allow parents to stay in unused L&D rooms. They call these 'parenting rooms'. They have my deep, deep thanks because they made a parenting room available to us, and that's where we lived for the entire 6 weeks until A was discharged. We'd trudge back and forth every three hours to bring what I'd pumped to the babies, and spend as much time with them as possible. 

The babies were on a schedule of 'cares' every 3 hours. This meant diaper change and feeding at a minimum, and also sometimes blood pressure and temperature checks. DH was amazing and started participating in cares as soon as possible. I joined in once I started to be in a bit less pain, around 2 weeks. We also had rounds once a day. DH and I made it an point to attend rounds every day, and we typically attended all cares except the 4am set, although we'd trade off who was present. 

On March 4, the babies 'graduated' to a second set of bays, slightly farther away from the nurse's station. On the 6th, they further graduate to a dual room, with one baby in each room. Aaron had been moved to an open crib by then, and Tess followed a day later. 

By the 13th, we started attempting to breastfeed with a shield. We started with T as she was cuing more frequently. It was tough. For the first several days, she'd just scream bloody murder when put to the breast and wouldn't suck. I was in so much pain sitting up, and my baby was screaming at me, and then I'd have to sit up to pump afterward. It was absolutely awful. Our third day of trying to breastfeed, we changed from a cradle hold to a football hold, and she took off. Over the course of our NICU time, she took anywhere from 0 to 27 ml orally. That wasn't enough for her calorie needs, so initially she was fed via NG, later by bottle. Our NICU does 'infant driven feedings' or IDF. This means that if you want to, they'll give you 72 hours of protected time where you try to breastfeed and the baby is 'topped off' via gavage. We started with T first, and actually went four days, until she could latch and transfer reliably without screaming. After that, we introduced bottles and she downed a complete bottle on the first try. Her OT said that was unheard of, and to expect that it would probably be a few days until she did it again. Instead, she downed a full bottle on her next feed too, and kept it up! Baby girl likes to eat!

Once we had T on bottles, A was doing better with cuing, so we started his protected time. It's utterly exhausting to have to try to feed for 30 minutes, pump for 30 minutes, wash pump parts, and then repeat 90 minutes later, around the clock. Doing that for two babies in a row, when still in intense pain, nearly did me in. I pulled back on breastfeeding after A's 72 hours, and just focused on pumping so they'd get breast milk. I didn't have great output, but I was keeping up with both of them at that point, especially because their milk was being fortified by Neosure to keep their calories up. 

Once both babies were finishing bottles regularly, our NICU stay came down to a waiting game. Two things had to happen for discharge: 5 days without an apnea/brady spell, and greater than 80% of feeds orally. To everyone's surprise, A nailed that before his sister due to her persistent bradys. While the doctors tried to swing it so that we could bring both home together, in the end A was ready just before 38 weeks and T needed another 2 weeks to stop bradying. In the end, both were home for Easter. 

Our NICU stay was extremely trying, and draining, but we are so grateful to the amazing care team that kept the babies safe. We learned so much from the nurses and the OT that we felt much better prepared as parents.

Friday, May 24, 2019

Too Tired for a Creative Title

Let's start with the amazing: the babies. They are absolutely incredible and my heart really overflows with love when I spend time with them. I truly could not be happier. They are all the challenge you would expect newborn twins to be, but I'm so, so happy to have the chance to experience that challenge.

Here's a photo from last weekend - how could I possibly not be crazy about these two?

Then there's the awful: my physical recovery. My c-section scar is great. My uterus, not so much. Had another operative hysteroscopy last week to clear out a lot of retained placenta. Pathology came back showing infection. My OB was amazed I'm not ragingly ill.

All of that is still better than my lower GI. Ulcers. Fissures. Prolapse. Hemorrhoids. Matters are still so bad, 12 weeks out, that my colo-rectal surgeon wants me to wait another 6 weeks before we even do the EXAM to see what surgery will have to entail. Colonoscopy and surgery will follow said exam. I am terrified of the recovery from that, as I'm still in intense pain on a daily basis and I know it will be unbearable after surgery, like it was for the first 2-3 weeks post c-section. I so badly want to be done with surgery and to be able to enjoy my parental leave time, but that's not going to happen.

I am grateful for every moment with these two, but I'm struggling with some of the emotions that parenting after loss entails. Things i didn't anticipate and will try to put words to later.

One that note, it's time to go deal with a fussy baby. I couldn't be happier to do so!