NICU – Keeping up with the Hoffmans

Back to the NICU

June 1, 2018August 6, 2018 Keeping up with the Hoffmans

As I mentioned in my previous post, in addition to throwing a birthday party for Theo and Emmett a few weeks ago, I also decided to take Emmett back to the NICU on his actual birthday for the first time to visit. The days and weeks leading up to his birthday were very emotional for me, as I mentally relived everything we had been through, continued to question myself for not picking up on signs that something was off sooner, and also just marveled at how far he’s come. It’s so cliche, but time really does go by so fast, and it seems impossible that it’s been two years since he came into our lives.

It felt like being on autopilot as I pulled into the familar parking garage, walked through the hospital lobby, down the long hall past the maternity ward, up the elevators to the fourth floor, and buzzed through security into the NICU. Only this time instead of lugging a breastpump or an overnight bag, I was holding a 23 lb toddler and a box of donuts for the doctors and nurses. Surreal doesn’t even begin to describe the experience.

I was able to visit with six different nurses who had cared for us during this time, as well as Dr. L, who had initially been one of my least favorite doctors but eventually became one of my favorites. He has a very frank demeanor that can come off a little cold at first, but you eventually learn what a big heart he has. I have no doubt he’s seen his share of heartbreaking situations, and I can only imagine there are just certain things you have to do to compartmentalize such an emotional profession. Dr. L was the neonatologist who had prepared us for the fact Emmett could need a g-tube — and then the next day E finally started eating. I made sure to tell Dr. L what a good eater Emmett is now! I shed some tears talking to everyone and it felt like visiting with old friends or family. Emmett clung to me the whole time, as he usually does in unfamiliar situations, but one of the nurses coaxed a high five out of him before we left.

A few days later, I went in for my first volunteer shift in the NICU. You may recall, this process has been almost a year in the making, but I finally got all the paperwork, vaccinations and hospital clearance I needed to start. To be honest, I’m kind of glad I got to do E’s birthday visit first, because that visit was just for us, whereas my focus was on the current NICU families when I was there volunteering. It was still surreal to see our old room, hear the familar beeps and alarms, scrub in at the wash station and smell the hospital soap, but I wasn’t as affected by the visit as I thought I’d be. At least I didn’t feel like it at the time, though I didn’t sleep well that night and had dreams about the NICU all night. Nothing bad; just those those fitful tedious dreams where you feel like you’re stuck in a loop. I go back again for another shift in a couple weeks and it will be interesting to see whether I become more desensitized as time goes on.

I’ll wrap this up with a repost of what I had written on Facebook and Instagram on Emmett’s birthday, along with the photo I shared from our NICU visit:

Today, Emmett is two. And today I struggle to balance polar emotions: overwhelming love and pride for our little fighter, mixed with crippling guilt and trauma. May 18 is the day he was born, but it’s also the day we nearly lost him.

I’ve never been one to hold onto any romanticized ideas around pregnancy or “the perfect birth” (let’s face it, childbirth is messy, undignified and hurts like hell). Yet today I’m still mourning the fact that we missed the entire third trimester, and I was cheated out of that beautiful moment the doctor places your newborn baby on you. Instead, my baby was immediately whisked away to be resuscitated and wasn’t even stable enough to be held for five days.

Today, for the first time since Emmett was discharged, we returned to the NICU — the most beautiful and horrible place I’ve ever been. A place we were imprisoned for more than three months, but where I fell in love with my baby and he grew and thrived in the care of angels on earth. It was both surreal and healing to go back and proudly show off what a beautiful, vibrant little boy Emmett is today.

Happy birthday to our miracle baby. For all you’ve put us through, our lives are so blessed because of you.

musings, prematurity, toddlerhood

Coping.

May 11, 2018August 6, 2018 Keeping up with the Hoffmans

I’ve been incredibly neglectful of this poor blog. I really do miss writing and I often think I should make a point to write more, athough I’m sure I’ve lost all the readers I once had. Even though life was crazy while E was in the NICU, I spent so much time just sitting in the hospital not being able to do anything, so writing was a great emotional outlet. Now life is a whole new kind of crazy, and self-care tends to take a back seat.

In one week, Emmett will be two, and much like last year, I’m increasingly more anxious and weepy as the anniversary of his birth draws nearer. Compounding my anxiety around his birthday, E has also had a tough year, medically. Some days it feels like prematurity is just … haunting us. He is such an amazing little boy, and I’m so aware of how much worse things could be, but every new diagnosis, every new specialist referral, every new modification we have to make to our lives … I’m just drowning. Most of all, I just want him to be normal and healthy, and it always feels like normalcy is right beyond our reach. I live in fear over what’s next.

In the past year, E has had three surgeries (ear tubes, adenoids and tonsil removal), and we’re facing the possibility of another surgery this year on his throat to correct his aspiration. We had another swallow study a few months ago and learned he’s aspirating thin liquids, so we have to thicken everything he drinks (even water) with these special gel packets. Because of his aspiration and ongoing breathing issues, we were referred to the aerodigestive program at Seattle Children’s (coordinated pulmonary, otolaryngology, nutrition and OT/PT care), and we have our first appointment next month. While it sucks to know his issues are severe enough to qualify us for this program, I’m actually looking forward to the idea of coordinated care, versus all the individual specialist appointments we’ve been having. We had a repeat sleep study a couple months ago and learned the sleep apnea he was diagnosed with last fall was mostly corrected with his tonsillectomy, though we may be facing a third sleep study because he still has mild apnea (it was mild enough they didn’t recommend any treatment, though). What else… we just found out a few weeks ago he needs leg braces, and he’s also allergic to peanuts. That last one probably has nothing to do with prematurity, but it’s just. One. More. Thing. We now carry an epi pen wherever we go.

I have been a part of a preemie parent support group since Emmett was born, and I’ve been going to more meetings lately in an effort to better cope with everything. One of the group leaders brought up an interesting point at our last meeting that I try to remember on days I’m feeling down about our situation. She said as preemie parents it’s easy to think, if only he’d been born full term, everything would be fine. But we can’t assume that’s the case. I don’t know why I went into labor early, but maybe there’s a reason my body kicked him out, and things could have been catastrophic if he’d stayed in any longer. Full-term babies can face complications too, and losing a baby later in pregnancy or in childbirth would certainly be worse than what we’ve endured. It’s kind of a morbid way of thinking, but the point is, you can’t assume things would have been better had they gone differently. There are just too many unknowns.

Speaking of NICU support, I finally completed all my vaccinations and volunteer paperwork, had my hospital orientation this week and will get to start volunteering in the NICU on the parent advisory board in a few weeks! I have so many mixed emotions about going back and I know it will be hard at times, but I’m mostly looking forward to being able to help other parents the way this group helped me.

Last weekend we participated in the March of Dimes’ March for Babies event and it really reinforced just how important the preemie community has become to me. Two years ago I had no idea this community existed, but now it’s such a huge part of who I am. We met up with a family who had been across the hall from us during most of our NICU stay, I caught up with a girl from my sorority I hadn’t seen since college whose 23-weeker is still fighting in the NICU (stay strong, Daisy!), and I filled out a couple butterflies for my friend who lost her twin boys last fall. The whole event was just really inspiring, emotinal and fulfilling to participate in. With that, I’ll leave you with a few photos from the event.

Playing with a balloon sword before the walk.

Baby Emmett, NICU, prematurity

Prematurity Awareness Month

December 1, 2017August 6, 2018 Keeping up with the Hoffmans

November is Prematurity Awareness Month. Specifically, November 17 is World Prematurity Day. As with last year, this time of year brought up a lot of feelings for me, from pride to anxiety, and everything in between; often both at the same time.

One additional thing hit really close to home this year: the birth of a friend’s baby just shy of 26 weeks around the beginning of November. Sadly, her sweet boy fought for 24 brave days before losing his battle just last week. I had tried my best to be there for her during his NICU fight with hope and advice and an ear to listen, but nothing can prepare anyone for the death of a child. “Devastated” doesn’t even touch what I’m feeling right now, and I know what I feel is only a miniscule fraction of what she and her husband are going through. And while I know his path and health challenges were different than Emmett’s, his death hit me really hard, not only for the empathy I felt for my friend, but the realization that that could have easily been Emmett too. On a related note, survivor’s guilt is very real.

One positive thing that came from this past month is the reinforcement of just how much I want to help other preemie parents. I had mentioned previously that I was going through the steps to start volunteering at our NICU on the parent advisory board. The volunteer onboarding process is quite long, and I had kind of stalled out on the process with life being so busy, but this past month has lit a fire under me and I’m determined to make time to finally get onboarded at the hospital. I know it’s going to be hard at times. And I know I’ll shed some tears right along with the parents. But it’s something I feel called to do.

At the beginning of the month I found a “30 day preemie photo challenge” that I decided to participate in on Facebook. And while pulling up a photo per day and describing each left me feeling raw all over again, it was also cathartic to revisit our journey a little over a year later. If you’re connected to me on Facebook, this will be a repeat, but I thought I’d share the photos here as well.

Day 2: baby bump pic (this was the last photo I would take of my pregnancy at 25.5 weeks)

Day 6: tubes. After a while you learn to see past them to the beautiful baby underneath.

Day 7: first pic with mommy. I am forever grateful for our nurse, Glenda, who took it upon herself to capture this moment, as I was still in a state of complete shock.

Day 8: first pic with daddy. Also, first pic with brother. We really struggled with how to tell Theo that Emmett was here. Theo had just turned 3 and we weren’t sure how he would react or if it would be scary to see him like that. Fortunately, he didn’t know babies came into the world any other way. It was love at first sight and they’ve had an incredible bond ever since.

Day 9: favorite NICU pic. This was shortly after he moved from the isolette to an open crib. We were finally allowed to pick him up whenever we wanted. And while we couldn’t go more than a few steps due to his wires and monitors, it was the first time in almost two months I could do normal things like pick him up when he cried.

Day 10: first feed. Emmett was 4 days old when his medical team first introduced just 1 mL of colostrum via feeding tube. I wasn’t there, but I snapped this photo when I arrived at the hospital a couple hours afterward. I remember I could already see a remarkable difference in him. His skin looked more vibrant, he was calm, and he already looked so much stronger than he had the day before.

Day 11: first outfit. They had just turned the heat in his isolette down to room temperature in preparation for moving him to an open crib and this was the first time he wore clothes. The hospital actually provided most of his clothes since many parents end up donating their preemie-size clothes to the NICU after their babies outgrow them. We did have a few preemie outfits we got as gifts, and it felt good to pay it forward by donating those to the NICU as he outgrew them too.

Day 12: sleeping. Emmett slept a LOT in the hospital and I remember thinking maybe we lucked out with a good sleeper this time around. Turns out that was just his prematurity and we would soon learn Emmett would follow in his big brother’s footsteps by not sleeping through the night until he was 9 months old (adjusted).

Day 13: awake. This was after he had pulled his feeding tube out at 3 a.m. The older he got, the harder it was to get him to leave it alone. I always told myself that feisty attitude was what made him such a fighter, though.

Day 14: any NICU pic. I walked by this wall hundreds of times during our 98-day stay. And it made me smile every time. Under each photo is a plaque that lists the child’s weight and gestation at birth. Seeing these beautiful, smiling faces and knowing they all had scary starts like ours filled me with so much hope.

Day 15: nurses. We had many wonderful nurses throughout our stay. Kris was one of our favorites. Not only for the way he cared for Emmett, but for how he made Theo feel special too. This was especially meaningful since I had a lot of guilt over feeling like Theo’s needs always came second during this time. This was the day Emmett got to graduate to the pediatric wing and I loved that Kris involved Theo in helping move Emmett down the hall.

Day 16: doctors. I couldn’t find any pictures of our doctors, but they were all wonderful too. So I’ll post another nurse picture. This was Emmett’s first bath. The nurse on the right, Glenda, kept saying it was “spa day!” I wouldn’t say Emmett was exactly relaxed, but I always knew we were in good hands when Glenda was our nurse.

Day 17: socks. We didn’t bother much with socks in the NICU, but we had some adorable footie jams!

Day 18: hat. My parents got us this hat and it was one of our favorite items we were gifted. He certainly was — and still is — our little fighter.

Day 19: kangaroo care. I would spend hours holding him skin-to-skin like this. We were only allowed to take him out of his isolette once a day, but we could hold him for as long as we wanted. His cares (diaper, temperature and feeding) were every three hours, sometimes four. So I would often hold him for the entire stretch between cares to maximize my snuggle time.

Day 21: look, no tubes! On August 1 we got to lose oxygen support, and on August 20 he finally got to lose the feeding tube. Being able to see his entire face unobstructed was a huge step toward some semblance of normalcy after more than three months of “stuff” on his face.

Day 22: getting big. I remember when he hit 6 lbs and thinking, full-term babies are born in the 6-lb range! He’s normal baby size now! He was just over two months old here (37 weeks adjusted).

Day 23: family pic. Because D and I were in two places at once almost our entire NICU stay, we didn’t get a family picture until the day we were finally discharged.

Day 24: random preemie pic. My view most days.

Day 25: in the bed. Moving to an open crib was the first major milestone we were able to check off our discharge list.

Day 26: car seat test. This was the day before he went home. We had to prove he could handle sitting in a car seat for an hour with no events (desats or bradycardias) before they would discharge us.

Day 27: holiday in the NICU. I only spent a few hours at the hospital on the 4th of July. I spent the afternoon holding Emmett in between taking Theo to a parade that morning and watching fireworks that evening. Holidays are hard in the NICU, especially when you have other children at home. You’re torn between wanting to be there for your baby, and creating memories and preserving traditions for your other children.

Day 28: going home outfit. It’s funny, I had Theo’s going home outfit picked out months in advance. But it didn’t hit me we might want something special for Emmett until a couple days beforehand. I guess we were a bit preoccupied. Thankfully, a coworker had given us this adorable vest and tie onesie so he still got to come home in style.

Day 29: first day home. There’s something so extraordinarily ordinary about this photo. It makes me exhale just looking at it, and I remember feeling like I hadn’t fully exhaled in more than three months. In that moment our family was finally complete and under one roof.

Day 30: today. Today Emmett is such a joy and his zest for life is contagious.

Baby Emmett, NICU

NICU day 98 – HOME.

August 24, 2016August 6, 2018 Keeping up with the Hoffmans

I never thought this day would come, but we are home. After E’s weight loss last night, they decided to check his weight again this morning. With his good feed volumes, a loss just didn’t make a lot of sense. Whether he managed to gain between last night and this morning or last night’s weight was off, he somehow managed to be up 22 grams this morning. So around 6 a.m. we got the official word from the doctor: we were free to go.

D came home and then I took him to work and T to daycare, and then I came back home to clean and get a few other things wrapped up. I spent the afternoon at the hospital, talked to the nurses and doctors (there were many tears involved), took some pictures, signed some papers, and then I went to go pick up D from work, and T from daycare (after nap), so we could all go back to the hospital and take E home as a family. It was an incredibly emotional experience.

It’s funny, everyone says the NICU days feel long while you’re there, but after you leave they feel like a distant memory. I couldn’t have understood while we were in the thick of things, but we’ve only been home about six hours and already I’m starting to see how that could be true. In many ways it feels like a bad dream that I just finally woke up from.

I’m going to cut this post short because I need to get to bed. And unlike in the hospital, there will be no nurses to feed him when he wakes up in a few hours. Now the real fun begins…

Waiting for Daddy to bring the car around.

Baby Emmett, NICU

NICU day 97

August 23, 2016August 7, 2018 Keeping up with the Hoffmans

We’re still here. We got news this morning that they would like to keep us another day to make sure we are set up for success on the eating front. But we were told if things went well today we could go home tomorrow! E had good feed volumes today, and I spent all day frantically tying up loose ends with work. I got to the bottom of my inbox and conquered my to-do list, checking off what I could, delegating what I couldn’t, and creating a comprehensive hand-off sheet for the contractor we’re bringing in to fill in for me. I also spent all evening doing laundry, cleaning and getting the house ready. After feeling a little panicked yesterday, like I had too much left to do, I actually feel really prepared now.

And then D texted me from the hospital tonight and said E lost 22 grams at his weight check.

Eff. We won’t get the official word from the doctor until tomorrow morning, but I have a feeling they’re going to keep us another day.

Come on…

Baby Emmett, breastfeeding, NICU

NICU day 96

August 22, 2016August 7, 2018 Keeping up with the Hoffmans

There is a good possibility we are going home tomorrow. Emmett continued to average around 80 percent of his feed volume throughout the day, and even took 50 ml via breast this evening, which is better than he’s done at the breast in over a week. He did lose 4 grams tonight, though, so I’m not sure if that will prevent us from going home. The nurse tonight said they don’t count 4 grams as a loss and would label it no change, but she also didn’t seem to be aware of our potential discharge tomorrow, and she thought he was still on scheduled feedings. She also tried to get me to breastfeed when he was just calmly staring up at me and showing no hunger cues and had just eaten an hour before. I’ve never seen this nurse before and I must say I’m not impressed. She doesn’t seem like she knows what’s going on at all. Thankfully at this stage in the game, the nurses aren’t as critical anymore so I’ll just wait until I see the doctor or until the day nurse comes around 7 a.m. to figure out what’s next.

I will admit, I legitimately freaked out this evening after I got home from work, realizing that we could potentially have Emmett home this time tomorrow and I still haven’t installed the car seat base or even thought about a going home outfit for him yet. I also still feel like I have a million loose ends I need to wrap up at work and a ton of chores around the house I had hoped to finish before we bring him home. Amazing how I’ve had three months to prepare for this and it’s suddenly crept up and I have nothing finished. As much as I want him home, I would probably be okay if they wanted to hold us for just one more day!

Baby Emmett, breastfeeding, NICU

NICU day 95

August 22, 2016August 7, 2018 Keeping up with the Hoffmans

Note: I was just notified by my mom via text message that I did not post this last night. Oops! Lots of good news below, and this morning we just got the even better news that if the next 24 hours go as well as the previous, we can go home!

Here’s the rest of what I wrote last night.

***

It’s been more than 24 hours on the no feeding tube trial and we’re doing well. E ended the day around 85 percent of feed volume and managed to gain 44 grams tonight, so that’s a huge win. He’s now 7 lbs 13.5 oz. I haven’t nursed him since yesterday, as I was gone for several hours today and he was sleepy the times I was there, so he’s just been getting pumped milk from a bottle. I feel like a little bit of a failure that I can’t seem to give him those numbers when I’m nursing, but I’m still determined to keep working on this. I know preemie moms who have left the hospital on bottles and fought their way back to breastfeeding and went on to have a successful time nursing. So it can be done. The most important thing is that he is eating, and minus the feeding tube. If he keeps this up we could be home very soon.

Baby Emmett, breastfeeding, NICU

NICU day 94

August 21, 2016August 7, 2018 Keeping up with the Hoffmans

Well, we’re doing another trial off the feeding tube. We aren’t quite at 80 percent due to the nurse gavaging him twice overnight (though if you ask me, sometimes I think they just gavage him when he could possibly wake up and eat), but he’s had several full feeds in the last couple days and when he pulled his feeding tube out again today the doctor suggested we just not put it back and see what happens again. This time around, the doctor suggested that we just do one or two breastfeeding sessions per day and make sure he is really awake, and bottle feed the rest. She thinks the one or two breastfeeds per day will give him the practice he needs so he doesn’t lose the skill, while allowing him to conserve some of his energy since he doesn’t have to work as hard for a bottle. We can work on gradually increasing the number of nursing sessions per day at home, but as long as we can maintain volume, the doctor said she sees no reason we need to stay here any longer. The next 48 hours will be very telling; we’ll either go home or go back on the feeding tube.

I spent most of the day at the hospital today, and went home late afternoon, and then D and I went out to dinner and a movie (T is with grandparents for the night). Then I came back to the hospital for the night. When I got here, E was wide awake and happy and the nurse reported he had taken two full bottles while I was gone. He then nursed and got about half of his feed volume from me, which is better than average. Since we aren’t gavaging after nursing now, the hope is that he can self-regulate and wake up again if he gets hungry sooner, or possibly take a bigger feed next time. I really hope this works, though I’m trying to be realistic since we’ve been through this before.

Baby Emmett, breastfeeding, NICU

NICU day 93

August 19, 2016August 7, 2018 Keeping up with the Hoffmans

E had a good feeding day today. He hasn’t had to be straight gavaged since 3 p.m. yesterday and he took several full bottles today. I went into the office so I didn’t get to nurse him until 9 p.m. this evening, but he took about a half feed from me, which isn’t terrible. He definitely does better with the bottles. We ended our day at 72 percent of all feeds orally, which is great! Of course, since I’ll be here tonight and most of tomorrow, the breastfeeding will bring down our average. The analytical side of me hates to see those numbers plummet on a day where I nurse more than bottle feed, but the side of me that really wants breastfeeding to work wants to practice at every chance we get. Conflicting emotions, for sure.

Either way, it’s clear that E is starting to get stronger. He was very alert during his feeding tonight and I even put him back in his crib still awake. He very well may sleep through his midnight feeding, but it’s good to be making noticeable progress. Inching along…

Baby Emmett, monthly updates, NICU

NICU day 92 and 3 months old

August 18, 2016August 7, 2018 Keeping up with the Hoffmans

I had really hoped we’d be out of the NICU by the time his three-month birthday came. But here we are. Actually, we had a really interesting conversation with Dr. L today at rounds. He asked us if we were tired of being here (duh) and said while they don’t like to do this, if we were interested, we could learn how to insert a feeding tube and we could go home on the NG tube while we continued to work on feeding.

I was shocked. He was basically putting the decision in our hands when to go home. I feel really conflicted. I want him home so bad. But I want him home healthy. And bringing him home on a feeding tube would mean multiple follow-ups with specialists, possible g-tube surgery, and the intimidating chore of changing his tube ourselves (which comes with the risk of accidentally inserting it into his lungs instead of his stomach – yikes.) It would be one thing if we were facing a long-term feeding issue. But all the doctors and nurses say this is textbook for an early preemie and that he’ll grow out of it. He just needs time. I just wish I knew how much time we were looking at. Another week, two weeks? Let’s wait it out and bring him home wireless. Another month, two months? Let’s just get him home already and stop wasting time in the hospital. So after talking it over with D and the rest of the medical team, I think we have a plan: give him until 42 weeks gestation (he’ll be 40 weeks on Monday) to lose the tube. His team thinks he’ll probably figure it out before then anyway, but if not, we’ll bring him home with a feeding tube at 42 weeks. If nothing else, it’s nice to have a hard stop.

Feeds went okay today. He’s taken more feeds by gavage than usual (three today, compared to his usual one a day), but the feeds he has done have been nearly full volume. It seems whether he takes a half feed every time or a full feed every other time, he’s still stuck at around 50-60 percent of his volume orally right now.

Anyway, with that daily update done, here’s what’s going on at three months…

Adjusted age: 39 weeks 3 days

Stats: 7 lbs 10 oz and 18.9 inches.

Milestones: As of August 1st we are off oxygen! Starting to do tummy time a few times per day.

Sleeping: Still sleeps pretty well, but I think that has more to do with him spending all his energy trying to eat. Though I still have hope we got a good sleeper this time since Theo was horrible!

Eating: The bane of my existence and obsession of every waking moment? In other words, we’re working on it. 65 ml of breastmilk plus 24 kcal of Neosure to fortify my milk, every three hours. Combination of breastfeeding and bottle feeding pumped milk (about 50/50 currently).

Personality: Is it too soon to say he is an affectionate baby? Theo was always so busy and not much of a snuggler. Even when he was an infant he was constantly moving and trying to see everything. E seems much more content to snuggle up against me. Part of that could be his prematurity. We’ll see…

Likes: Snuggling, being held. When he cries he calms down instantly when you pick him up.

Dislikes: Gas, reflux, having his temperature taken and his NG tube. Tries to pull it out often and hates having it put back in.

Mama: Still hating pumping. Still going into the office twice a week. It’s been hard to plan for things, knowing I’ll be out soon, but not knowing exactly when that will be. Starting to drop a bit below my pre-pregnancy weight, which is nice. I lost quite a bit of weight while breastfeeding T, but then gained it back, and then some, after I weaned. I’ll have to be more aware of that this time around. I’ve started losing my hair lately — I had completely forgotten about that fun postpartum side effect. When you’re pregnant you often stop losing hair (which is why pregnant women usually have great hair), but then a couple months postpartum you lose all that hair you should have been gradually losing during pregnancy. The human body is weird. Yesterday during barre I kept having that sensation that a hair was tickling my arms and I must have pulled about 10 strands of hairs off myself throughout an hour long class. At this rate I’m expecting to be completely bald in a few weeks.