Great News!

We had the best news today! 

When CJ was about 5 weeks old, a nurse heard a murmur. After some testing, we found out that it was an ASD, atrial septal defect, essentially a hole in his heart. This was not caused by his prematurity, he would have had it regardless as that part of his heart would have already developed by 29 weeks. 

Since discharge from the hospital, he has been tracked by cardiology and he's taken Lasix to help remove fluid and make his body have to work a little less hard. He's done really well on the medication and I credit that to helping his weight gain, since he didn't have to burn calories just breathing.  We jokingly called his twice daily doses "goose juice". 

Back in March, Chris had taken him to a cardiology appointment and the results weren't that great. Due to the size of the hole, our doctor thought they may need to do open-heart surgery to repair it. I had never realized this was even an option, I thought if anything he would need a laparoscopic procedure. Chris said the doctor we met in the hospital initially had told us about the potential need for this type of surgery. I must have just blocked that out. We scheduled an appointment for May and figured we'd go from there. 

When I took him in May, the doctor was happy to report that the hole was significantly smaller. CJ would have to remain on his medication and come back in a few months. 

  All this excitement tired CJ out!

All this excitement tired CJ out!

Well, today I took him and Dr. Hayes was excited to tell me that the hole had gone down even more dramatically. So much so that we could stop giving him his medication and not return for a year. She said the hole could still close on it's own and that it's unlikely we'll even need to do any procedure even if it doesn't close all the way. 

Also, on the hospital scale he weighed 17 pounds, 12 ounces and he measured 27.5 inches tall.

What a great way to start the weekend! After having a sick kiddo all last weekend, it was awesome to have such a positive change.

On Lack of Sleep

It's been 11 months since I've slept straight through the night. 11 months ago today, my water broke and I was admitted to the hospital. I did sleep in fitful spurts, being woken up every few hours and asked about the contractions and my vitals taken. I remember the sweet nurse, Sarah, whispering to me quietly asking about the pain I might be feeling. My husband on a little pull out couch next to me. We hadn't expected any of this.  I slept in fear.

After he was born, I remember someone suggesting that because my son was in the NICU, at least I was probably sleeping more than being home with an infant. Nope, not even close. I was up every 3 hours to pump. But more so than that, having your child separated from you like that in the first weeks of being a mom was enough to keep me up all night. I was resisting the urge to call and check on him at 3am most nights. How many cc's had he eaten? Was he crying for attention or sleeping comfortably? Did he miss me?

Now, I have a child who's 11 months old and... spoiled. After suffering through 5 weeks without him home, I picked CJ up every time he cried. As a first time mom, I may have done this even if he wasn't a preemie, but having gone through what we had I felt a need to be a constant source of comfort. So the past few weeks we are making the efforts to sleep train him. He's too big for his bassinet and co-sleeping isn't for us, so we are attempting the move to his own crib. Our first few nights have been tough, despite The No Cry Sleep Solution we are experiencing lots of tears and screaming. But this is a marathon not a sprint, and I'm feeling pretty determined. 

Things I Missed

When my pregnancy was cut short at 29 weeks, I felt I missed out on a bunch of milestones, especially for a first pregnancy. When I was in the hospital, I didn't want the focus to be on me, I wanted the focus on CJ. But when I think back, I do have some melancholy about a few things I never got the chance to experience:

  • Packing a hospital bag - I went to the hospital in shorts and a tank top and didn't bring anything else with me. I wanted to pick out the perfect pjs and robe for first family photos.
  • Going to a childbirth class and hospital tour - We had ours scheduled for October, they didn't want me to book any earlier. So this was canceled. 
  • Having a shower before my son was born - I did have a shower in November once he was home and we were settled. And it was lovely, but I spent my shower missing him since it was my first few hours spent out of the house.
  • Picking out a "going home" outfit - His outfit was cute, but was something we had received as a gift. I didn't have anything planned for that first car ride.
  • Being really big and pregnant - I know 39 week pregnant mamas will think that's crazy, and I probably would've complained had I gotten there, but I always imagined having a big belly. 
  • Feeling CJ move in my belly - I felt flutters, but I think because of how he was positioned I never felt real kicks or movement
  • Experiencing labor - When my water broke, I was experiencing contractions every few minutes but I couldn't feel them. Again, I know a lot of people would say skipping the whole labor thing was probably a benefit, but it feels like I missed part of the process.

It's a little hard for me when I see others going through all of this stuff. Of course I'm happy for them and wouldn't want anyone else to experience the trauma of prematurity, but I do get these pangs of jealousy that are unfamiliar to me. It doesn't take long for me to look at my perfect little guy and forget it, but it's still there and probably won't really go away or may just take a while.

Apgar Score

One of the things that CJs baby book (which is specially designed for preemies) asked was his Apgar scores. I realized I had never been told (or didn't remember) what they were, so one day I asked his nurse if she could look them up for me. 

She seemed somewhat hesitant to share with me and once she did reveal them, I realized quickly why they didn't tell me them. They score the baby on a 10 point scale, 2 points each for appearance, pulse, grimace response, activity, respiration. CJ was a 1, then a 4, then finally an 8. 

He had to be intubated since he wasn't breathing at birth, so I expected his scores to be low. But these were even lower than I had thought. I was glad I didn't know this right away and also pretty glad no one was in the room during that time since it must have been pretty scary! Apgar scores don't say much about a child's overall health so judging him based on those numbers was pretty much pointless anyway. But knowing these, it did help me understand why the doctor always told me how traumatic his start had been. Now, I look at it in amazement of his strength! 

Support

I was offered a place to stay countless times, people helped me with Medicaid paperwork, I was provided CPR classes and we received flu shots for my whole family. But no one ever asked how we were doing as parents. No one offered a support group to talk to parents who had been there before or even a way to connect with the other moms and dads who were currently there.

We reached out the best we could to others. I often chatted with moms in the pumping room. I found that I was the "experienced" one who often answered other moms questions. Me and a few others were old standbys while others cycled in on a weekly basis--  children just needed a day or two under the lights, unlike the longer term folks. But those were generally surface conversations. Some expressed fears but we hardly ever got into the more emotional stuff. 

I made friends with another mom with a son similar to CJ. They were born about the same gestational age and they mostly needed to learn to eat and gain weight. My husband made fun of me for wanting friends but I felt this deep need to find connection. 

My best friend connected me via email to a friend of hers from high school. Talking to her turned out to be a really helpful experience. She offered hope and experience that I knew must exist, but hadn't found yet.

She also introduced me to a Facebook group, Hand to Hold - NICU Family Forum. I didn't join until later, but I wish I had know about it so I could ask questions or just hear from other moms who had been there. It made me realize that others could understand what we'd be going through.  I'd highly recommend it!

I wish our hospital offered some sort of support group as a service. I volunteered as a mentor with Hand to Hold because I feel that was the biggest thing missing for me during our experience, so I'd encourage other moms in my position to reach out early for support. They can connect you with a mentor who has experienced similar issues and provide you with phone, text, email support.

The Worst Thing

Our NICU experience was generally smooth. CJ had some small issues, but we felt pretty sure of what the treatments would be. When he had his brain scan, which is pretty typical for preemies, we were worried but assumed based on how well he was doing that everything would be ok.

Yet, when one of his NPs explained IVH to us, it left us really unsure. She started by explaining what an IVH is (intraventricular hemorrhage-- bleeding in the brain) and what that could cause. As she continued with a confusing explanation of the different grades (basically the level of the bleed), starting with Grade 4, the worst, I started feeling like there was something serious that could cause lifelong challenges for CJ. 

While the NP spoke, I could feel my eyes filling up with tears. She moved on to say that he had a Grade 1 bleed, but mixed it in with talk of some challenges. When she finally stopped talking, she asked if they were happy tears and I said I didn't know. I was tired and overwhelmed and her delivery was so poor I wasn't sure what was true. I left the room to go pump and have some time alone. I texted my college roommate, Lauren, who happens to be a pediatric neurologist. Little did I know that Chris was calling her from the downstairs waiting room. 

Lauren helped us both understand that an IVH grade 1 is incredibly common and rarely causes other complications. While they can cause some issues, many of these types of brain bleeds clear up on their own. 

I learned a lot of medical terms and about life in a hospital during CJ's NICU stay, but I also learned that it's not always what's being said but how that can affect a person. 

Life in the NICU

After I was discharged, we settled in to somewhat of a new reality. I spent my days at the hospital just sitting by his side.

Pumping every few hours. 

My mom came often and sat with me and took me to lunch. 

My father-in-law chauffeured me around, picking me up and bringing me back to their house to nap. Then coming back with my mother-in-law for the evening visit.

I read to CJ from the books my cousin sent us. I tracked some of his milestones. I took photos. 

I got used to the beeps. The wires.

I washed my hands so often they were raw. (Even now, the smell of that hospital soap brings me right back). 

Chris went to work and then came straight to the hospital every night. He didn't complain, but he was exhausted.

We learned to change his tiny diapers, we gave him baths.

CJ spent most of his time sleeping under the lights. He was on the intensive side, but only because he was so small. The other babies needed more care. CJ was there just because he was so small.

We waited for results of tests and measured feedings in "cc's".  

Only our immediate family visited-- the NICU was strict and didn't allow any visitors without us there, except for our parents who were on a list. I wasn't ready for others to meet him yet. 

We shared photos with family and friends. They thought he was bigger than he was. It's hard to understand what a 3 pound baby really looks like.

We met with doctors, nurse practitioners, and nurses. The nurses did mostly everything. I always say now, the NICU nurses are like angels. They have hard jobs.

We ate mostly because our parents helped us with that. I can't imagine how we would have eaten dinner had Chris' mom not had something waiting for us every night. We were too tired to think about food.

I called every morning before I showered to check on how CJ did overnight. I'm grateful still that it was always good, he did good.

I cried when we got home sometimes. But I laughed too, delirious and overwhelmed and giddy over that perfect child I just wanted in my arms at all times.

We became his parents even though everything felt foreign. But also everything felt familiar at the same time, since we didn't really know anything different. 

Eventually, we learned to give him bottles, slowly and patiently. He still had a feeding tube for what he couldn't finish. It took forever for him to eat half an ounce (15 ccs). But we were proud as he worked his way up to eating more and more. 

After about two weeks, he moved to the less intense side of the NICU. Then there were 6+ babies in a room shared by two nurses. They worked around the clock-- 3 hour cycles of vitals, changings, feedings, recordings. 

I was relieved to have moved, the other side was heavy, dark, quiet. Scary. The new area felt more like the stepping stone to going home.

We waited. 

Forgiving My Body

One thing that was hard in the first few weeks after delivering CJ was the fact that my body had "failed" me and my baby. It was especially difficult for me-- as someone who craves control-- to not have a reason for why this had all happened. 

I had been perfectly healthy. I felt a lot of guilt for being physically active and working a lot in the weeks leading up to his birth. Although all doctors I have discussed this with said that my physical activity had nothing to do with it, I wished I had just relaxed more or ate more fruits or something.

The only explanation any doctor could guess at was that there must have been some type of infection in my body. Apparently our bodies know to "kick out" the baby to prevent any issues. The other possible issue could be related to my uterus. The doctor who performed my c-section said that my uterus was a "strange" shape. I've tried googling that to no avail. I'll be having a followup MRI to see if there are any answers there.

But I've started to forgive my body. I try to hold on to the appreciation of the small things. Being able to breastfeed has been a huge help for me (my body has graced me with making the nourishment he has needed to grow), but outside of that it's helped me be physically strong enough to care for him despite lack of sleep and the like.

I've also had to come to terms with never being able to have a "normal" birth. I had a classical c-section (due to his prematurity and the rapid nature of his birth) and that type of cut poses some future complications. I've been advised that any future babies will be born via c-section around 36 weeks, to avoid any issues. 

Has anyone else had to come to terms with your body's "failure" relating to childbirth? 

 

Being Discharged

I convinced them to let me stay another night, not because I needed to be there but because I wanted to be close to CJ. I liked that I could just walk downstairs whenever I wanted to go see him. When they did discharge me, my mom and mother in law helped me with all my stuff. They left me in the lobby while they went to get their cars. I knew I didn't want to be leaving without my baby but it really hit me when I was waiting there. There were several other moms who had their newborns tucked into carseats, going home all together. Their husbands pulled up and idled their cars so they could run in and help their wives to the car with their new bundles of joy. I knew in the back of my mind that being discharged would be challenging, but nothing prepares you for those feelings. 

When my mom finally pulled up, I let it all out. Up until that moment, I had been strong because I had to be. We had a beautiful son who was fighting hard and doing well. How could I complain? How could I feel bad for myself? But leaving him there was the most unnatural thing. As a mother, the most fundamental parts of being his parent had been taken from me. I had to leave it up to someone else to care for him, he received his nutrients from an IV, I could only hold him when a nurse took him out of his incubator for me. I cried most of the drive and it almost felt good to just let it out.  

I would be staying at my in-laws for the time being because I couldn't drive post-surgery and they were less than 10 minutes from the hospital. When I got there, I just felt sad. My mom and mother-in-law encouraged me to just eat some lunch and rest a bit. I felt kind of lost. In "our room" my mother-in-law had framed a photo of CJ from the first time I held him. It was so touching that she did that for us and comforting to have him "there". I keep that frame on my nightstand now.

It got easier, but I think back on that is definitely one of the more difficult memories. 

Breastfeeding and the Preemie

Breastfeeding has been an incredible journey for me. I knew it was something I wanted to do, but hadn't really put a ton of thought into it before CJ was born. I had purchased a breast pump (it was actually my ONLY purchase before his birth) because it was on-sale on Groupon, and that was it. 

When I was rushed into emergency surgery, breastfeeding was the last thing on my mind. But shortly after I finally met my little man (7 hours after he was born), the nurses brought me back to my room and taught how to use a pump. It was 1am and I could barely keep my eyes open but knew this was incredibly important for my preemie. I pumped that colostrum and woke every 3 hours to continue deliriously doing so throughout the night. In the morning, I met the lactation consultants who told me that it looked like I had a great supply already so for that I was grateful.

Since he was born at only 29 weeks, CJ wasn't able to eat yet. Babies don't have the sucking reflex until 34 weeks and he was receiving his nutrients through his IV. Over the next few days, the nurses started by just putting some colostrum in his mouth and then later inserted a feeding tube to give him tiny amounts of my milk. Initially he was getting about 5 ccs per feeding and that increased each day. Pumping was a hassle (I had to carry my pump parts with me to and from the hospital and my hospital grade pump came with me pretty much everywhere else I went), but it felt like the only thing I could do for him and so I kept to the schedule of pumping for 15 minutes every 3 hours no matter what was happening or where I was. 

After a couple of weeks, he tried a bottle and I started putting him to breast every day or every other day. I was lucky to have the help of the NICU lactation consultants who were very supportive. We had to use a nipple shield and we stuck to short sessions of 10 minutes max. There was little privacy in the NICU-- we had to find and set up screens which offered only minimal coverage to be honest. Each time felt like a bit of an ordeal, but we worked through it. 

When he came home, I kept up the pumping. We were feeding him bottles of breastmilk and then I was pumping after each feeding. My entire maternity leave felt like that's all I did (change, bottle feed, pump). I tried to breastfeed about once a day but that added a step-- triple feeding required me to attempt a short nursing session, then offer CJ a bottle, and lastly pump.

Right around his due date, he seemed to be open to the idea of nursing more. I finally called the lactation team and asked them what they'd recommend. I was thrilled to hear that they thought I could move to exclusively breastfeeding (no more feeding by bottle and pumping after). I was nervous but they told me to just schedule a few weight checks with my pediatrician to make sure he was getting enough. He still required the shield, even though his suck was strong by then, but I think that was mostly just what he was used to. All of this was timed to my return to work so he received 3 bottles a day from whoever was taking care of him.

His weight gain is about 0.5 ounce a day, which is acceptable (recommended weight gain for breastfed babies is 0.5-1.0 ounces a day). One of the doctors at our pediatrician felt that was a little slow but he's been pretty stable at that number so they others are all comfortable with that, since all other signs are good (wet diapers, etc).
 
CJ's turned out to be a pretty flexible baby when it comes to eating-- he has little preference between bottle and breast. After about a month of "exclusive" (in quotes since I was only able to breastfeed when not at work), we were able to get rid of the shield. It was funny because he would generally fuss when I would try to get him to eat without it and one day I wanted to show my mom how he did that, and that time he just latched and never turned back!

I'm lucky in that I have a pretty sizable stash from all that pumping I did when CJ was eating very little. Even though he wasn't eating it, I needed to do it so I'd have the supply when he was ready to eat. Now, I pump twice a day at work and that typically covers the next day's bottles. When I get home from work, he's pretty much always ready to eat no matter what time he ate last. I like to think it's because he misses me when I'm gone! We've also experienced our share of cluster feeding nights, but those are generally (thankfully) short-lived.

I'm so grateful that it all worked out. I think I'm even more grateful that we were able to make it work despite the circumstances of his early birth. My goal now is to make it to a year!