The Story of a Little Brother

I spent part of this week writing out B's birth story and NICU stay. It's seven pages, y'all. I wasn't sure exactly how to draft it via blog without making you read for hours. That's why it's taken me so long.

So here we go. Here's B's birth story.

The Beginning - Wednesday, February 22nd.

I spent the day at work. I was training my replacement and planned to complete my final day before B’s arrival (induction scheduled for 2/29/12) on Friday the 24^th. Things didn’t quite go as planned. Like they ever do! Lunch at 12:15 consisted of a PBJ, string cheese, and celery sticks. I scooted out to my routine OB appt. after work at 3:15 and my husband came with me. He hadn’t been coming to all of them, but he came this time in case there was any chance we might be getting an earlier induction. I had my last NST on Monday the 20^th and was set to have another NST on Thursday the 23^rd. 

My OB appt. yielded some surprising results. My OB told me that she thought we needed to head right on over to labor and delivery (like right then) and start my induction. I was 36w6d. The reasons in her recommending were the following: our history of unexplained loss, excessive amniotic fluid discovered during a BPP at the Perinatologist’s office during my NSTs (like over the high level) which could cause the cord to come first if I my water were to break and a potential demise, being 3cm dilated, having Braxton Hicks contractions every 3 minutes, and the fact that B hadn’t been moving a ton and scoring 8/10 on his last two NST/BPPs. The concern was that he was scoring 10/10 for weeks and then started scoring 8/10. Considering all we’ve been through, the logical choice was to induce. Of course, we knew that also had risks. For one, he would be barely term and likely have some symptoms of a preterm baby—mainly lung immaturity. They don’t give steroid shots to babies past 34 weeks… so that wasn’t an option. We just had to hope for the best. I was also at risk of an emergency c-section (though not a terrible thing if successful) since my water breaking could mean the cord rushes out. But the likelihood of having a live baby was good… so we decided to induce a week before our scheduled induction date. We were meant to have a leap year baby, but he was coming much sooner. My OB wanted me to head straight to L&D, but I wanted a shower and to pack some things since we had nothing ready. We headed home (3.5 miles from the hospital) and packed things in a fury. I took a shower and we were off. We were home maybe 30 minutes tops. And who was she kidding? I wasn’t about to walk through the doors of that hospital and into Labor and Delivery without my husband. I could not do this alone.

We arrived at the hospital close to 5 p.m. I sent an email at 4:33 p.m. to some BLM friends to let them know. To say that we were terrified was an understatement. There were tears of fear and excitement in the car. Tears about going into labor and delivery where Andrew was born and where we said goodbye. Where we had our 24-week scare with B. Where we had our D&C after the miscarriage in June. We’ve never had good news there… but were hoping this experience would be different. I made sure that the awful doctor who delivered Andrew and dealt with our miscarriage was not the on-call doctor. She wasn’t. Phew. We were checked into the room closest to the OR just in case the cord were to come first after they broke my water. There wasn’t a single other patient in L&D that evening. I was grateful.

It starts.

Our first nurse was also our discharge nurse during our stay with Andrew. It was only fitting that she checked us back in for the birth of our second son. She attends the same church and has mutual friends. She also shared some intimate moments with us about her own grief journey this past year and let us know she was praying for us. She started me on pitocin around 5:30 and my contractions were growing stronger. B’s heartbeat was strong but at times would send us freaking out because he would move or the belt would shift. Ray and I would not take our eyes off the thing for the entire induction process. No joke. One of us had to be watching it the entire time, despite the nurses assuring us that there were two additional nurses monitoring his heartrate.

The delivering doctor came in (who also performed my D&C…lovely) and broke my water. What a weird feeling! With Andrew, I didn’t feel it because it happened as I was pushing. Because I had an abundant amount of fluid, they were literally fishing it out for minutes upon minutes. I asked how much water at one point and my doctor told me that a gallon wouldn’t be unreasonable. No cord came. Phew. Around 9 p.m. I was around 6cm dilated and still feeling pretty great. I didn’t need the epidural quite yet, but I knew that it would only be a matter of time and the nurse kept asking if I wanted it. What I really wanted was to pee… and I knew a catheter would be administered along with the epi. Around 9:20 p.m., the anesthesiologist came on in and made sure to stick me (twice) and finally managed to get that epidural moving.

I started pushing around 12:10 a.m. and had 9 full contractions of pushing before B was born at 12:42 a.m. on February 23, 2012. He was born at just barely 37 weeks. 19 inches long and 7lb. 6oz. Andrew was the exact same weight. <3 We heard him cry and it was quite possibly the best sound I’ve ever heard. Ray was over taking photos while the nurse was handling all of the cleaning, vitals, and measurements.

B had arrived. But all was not well. Again.

About 2 hours later after skin-to-skin time and we were all cleaned up, we were wheeled down to Mother-Baby for the first time. We had never been down this hall. After having Andrew, we stayed in L&D the entire time until we were discharged. The nurse was extremely sensitive to our needs and took us down a back hallway and away from our dreaded delivery room where we said goodbye to Andrew.

Transition to Mother-Baby. But not for long.

Once in Mother-Baby, things were going well… until they weren’t. Again. He had his first bath... Ray took photos and then headed down to the cafeteria to grab something to eat.

I surrender!

I pity the fool who tries to mess with my mama.

The nurse then wheeled B down to the nursery to take his vitals around 6 a.m. It seemed like a long time, so I sent Ray out to check on him. Right there in the nursery was the neonatologist and a team of nurses surrounding his bassinet. Something was wrong. It turns out B started choking in the nursery and they had to save him. Save his life. They took him down to the NICU for monitoring after because it’s protocol to keep a child for 6 hours after an “episode” occurs. He had his second choking episode in the NICU. He was officially admitted at that point. This is where they asked my permission to give him formula.

And this is where I lost it. 

I was a full-on mess of emotions. My first son died. My second son nearly died. And now they admitted him to the NICU and are giving him formula. Formula is obviously not the devil, but when you envisioned this perfect skin-to-skin and rooming-in time with your baby and they have now taken him away because he is sick and can no longer be in contact with his mom… it’s very emotional. I felt like that was the last straw in having no control.

Once admitted to the NICU, they performed an x-ray on his lungs. Leave it to me to be in the 1% again. Born at just 37 weeks (full term) B was diagnosed with Transient Tachypnea of the Newborn (TTN). Basically, it’s fluid in the lungs that wasn't able to be fully extracted as he exited the birth canal and because he was slightly pre-term. There are no long term effects and it is usually gone within 72 hours, especially with the assistance of forced oxygen via tube. Once diagnosed, they inserted the oxygen tube and hooked him up to 25% forced oxygen (we breathe 21%). They slowly weaned him off the oxygen as time progressed and his breathing began to improve over the course of the next two days.

Does this look comfortable to you? Didn't think so.

Vitals: Heartrate, breaths, oxygen level

Once in the NICU, B needed  to go 24-48 hours under observation without any drop in his blood oxygen level before they would release him after they removed the oxygen. Because B was considered preterm and was not breathing properly at birth, this caused him to struggle with feeding—because the body can only handle one fight at a time. He was given a feeding tube in the NICU that they were feeding formula into—Gerber Good Start Gentle. I had lots of tears over this. They asked my permission to feed him and despite wanting him to be an entirely breastfed baby, I knew he was also fighting for his life and should not be deprived of nutrients that could help his lungs and body heal faster. He only used the feeding tube a handful of times in the NICU, but it still hurt watching them put the tube down through his nose. Seeing your brand new baby fight for his life is simply terrifying. In the meantime, I was seeing a lactation consultant between B’s feedings (of which we were at every single one) to assist with pumping. She even visited the NICU during his feeding a few times to assist with latching (of which didn’t go so well… but I learned quite a few techniques to use with a young baby). He was also fed colostrum in addition to the formula. Our schedule the entire time he was in the NICU consisted of the following:

• Go to B’s feedings—change his diaper, bathe him, hold him, and put him to breast… then feed via bottle or tube with breastmilk and formula.
• After about an hour, leave to go pump back in our room at Mother-Baby.
• Interruptions by various doctors, consultants and nurses.
• Sleep for about 1.5 hours. Rinse. Repeat.

Andrew was never far away.

This of course was only until we were discharged from Mother-Baby. That story to come later. We really envisioned having our son room-in with us. I even wrote countless emails to my fellow babyloss friends during my pregnancy about how terrified I was that they would take him away from me after I delivered. I was induced, so it was partly my fault, but I could very well be typing another demise story had we not induced either. It’s tricky. In addition to not rooming-in with our son as we envisioned, we were forced to walk by the room I delivered Andrew every single time we went to visit B in the NICU. Room 120. On the corner, just down the hall from Mother-Baby. We walked by about 20 times a day, at least. A room I never wanted to go near again. Ever. 

Unfair connections.

On B’s second day in the NICU, we walked by Andrew’s room and then the room next door… and I saw something all too familiar. A falling leaf on the door of a room in Labor and Delivery. That same falling leaf was taped to our door after delivering Andrew stillborn. There was a couple behind those closed doors that lost their baby and I walked by visiting my (living) son in the NICU, knowing the grief journey they were embarking on, just as we did 15 months prior when Andrew died. I wanted so desperately to walk in and tell them I understood. That I have a son in heaven. That this journey is the most excruciating one they’ll ever endure and one that is so incredibly unfair. Instead, I just cried. Because I know that grief in such a raw form. I was thankful this time that I was walking to see my living child, but I knew that his lung issues and episodes could have very well ended in another demise. That I could have another falling leaf on my door.

Inside the NICU doors.

In the NICU, B was undoubtedly the biggest baby among the six others. The others were all super preemies and B was the only one close to term. Ironically, most of them were not on oxygen because they were given the steroid shot to develop their lungs before birth. One of my nurses in Mother-Baby told me that they had three cases of TTN babies in the NICU that week alone, so it’s not uncommon. However, the other babies in the NICU were there mostly for maturity issues. They needed to grow to term before being released. We watched another baby come and go in the NICU after also having an episode. She was stabilized, thankfully and was released. But to hear the panic alarm and the neonatologist and other NICU nurses rushing to get another baby was awful. Since I was not by his bedside when he had his episodes, it scared me to watch the process unfold as if it were my own child.

Friday, February 24th. The next day.

We had a social worker come by our Mother-Baby room to talk with me about PTSD. She said it sounded like I probably had some of it creeping in since we have a history of loss and now a traumatic experience of our second son being born with complications. She wanted to know I had support in place—that I would be okay. How someone with such strength and independence became someone who must struggle and lean on others for emotional support is hard to swallow. To know I’m listed as a person to watch is even worse.

Friday also marked the day of B’s echocardiogram on his heart. They were hearing a slight murmur which is common in newborns, but because he was having lung issues, they wanted to rule out any connection to heart problems as well. Because they only perform these ultrasounds on specific days, we went ahead with it. We held B’s arms and soothed him for the entire process of an hour. It was painful to watch our son being prodded like that, but thankful to hear that the only detection was the normal valve that shuts on its own once the baby is born. Check that off the list of potential problems. Phew. The rest of the day was a blur. 

Saturday, February 25th.

At 2:00 a.m., B was released from oxygen completely. He had been being weaned during the 24^th and was finally oxygen-tube free by our 3 a.m. feeding on the 25^th. It was such a joy to see him not only breathing on his own, but free of that darn oxygen tube. Of course he still had his feeding tube as the NICU nurses insisted he was not eating well—and in fact he was not. He needed to improve his eating and be off oxygen without any episodes for 24-48 hours before they were willing to release him to go home with us.

No more tube! Yay!

But I still have this stupid tube. Get it out. Please.

Discharge day. Fighting to stay.

In the meantime, I was being discharged from Mother-Baby… the place where I was meant to be recovering but seriously felt totally recovered hours after giving birth (no joke, I could’ve gone for a jog). We had nowhere to go and most certainly were not willing to leave our second son at the hospital by himself. I could not show up pregnant for the third time at that hospital and leave for the third time without my child. I just couldn’t. And go home to an empty home again? Not going to happen.

The OB from my practice came in to see me in Mother-Baby and said he would not perform B’s circ until he was out of the NICU. However, when we went in to see B at his next feeding, the circ had been performed (sans drugs—this doc doesn’t use them). Our concern was that now that B was off his oxygen, he had to perform well at feedings before they would release him. But what baby is interested in downing a bottle (especially a preterm one, no less) that just had a circumcision? In addition, he was receiving his Hep B shot that day as well and we felt doomed from the start. We wanted him eating and the NICU required a certain amount in 30 minutes and made it very clear that if he didn’t “pass”, they would not be discharging him.

He fed well without a tube, but after his circ was feeling a little exhausted. The NICU nurse was incredibly rude (though the majority were SO wonderful and there is no doubt to us that they saved his life) and came over yelling at us and telling us that we clearly were not reading his cues and that they would be taking the last 9ml and putting it through the feeding tube. The kid just had a circ and a Hep B shot! I’m not sure I’d be hungry either! We were so frustrated because as we know it, he’ll eat when he feels like it. At this point we felt like we needed to give him an exact amount and no more at feedings—just so we could be discharged. We felt like we had to withhold more food if he wanted it because then he might not feed as well for the next meal (big lunch, small dinner… was our concern). That last 9ml potentially cost us another day in the NICU because he had to wait a full 24 hours and only be bottle fed in order to be discharged. 

So now he's eating. And no longer has TTN. Time to go home?

As of Saturday, he was no longer on oxygen, was eating without a tube, and was stable for over 24 hours… yet he was not being released. We told the NICU that we did not intend on leaving the hospital and placed a complaint with the lead charge nurse of the hospital for the behavior of the NICU nurse who was treating us as though we were inept… despite us being at every single feeding he had and her only being there for a 12-hour shift. We had the patient advocate in our Mother-Baby room and the lead nurse assuring us that although we had to check out of Mother-Baby by midnight, that we would not be kicked out of the hospital. The NICU nurses (though not the grouchy one) pulled together and told us we could stay from 12 a.m.-7 a.m. in the NICU conference room. It had a loveseat, two chairs, a coffee table, and a floor. It was also 5 steps from the NICU doors. We immediately checked out of Mother-Baby and schlepped our stuff into the room. You know, the room where they tell parents their child is terminal. It was awful knowing this, but we simply had nowhere else to go and home just was not an option. We were not missing a feeding and we were not leaving our son behind. We slept restlessly in the room and then moved our things to the hospital lobby and stashed them behind a couch before B’s next feeding. 

Why not just stay in the Ronald McDonald House?

The hospital has a Ronald McDonald House that was set to open in January… but obviously it was still not open despite the statue of Ronald in the lobby, a big sign up, the ribbon cutting being reported (with pictures!) in the paper, and everything. Apparently some bureaucratic document had yet to be signed to officially open its doors. Super. Here we are staring at Ronald in the lobby of the hospital and napping on the lobby couches. 

There's Ronald... now where's the house?

Camping out.

Bye, Bye NICU - Sunday, February 26th.

Our new day nurse was once again, the grouchy nurse! We told the lead nurse that we would not have her around our son anymore, so she had her apprentice taking care of B instead. She was being so incredibly nice to us after we placed our complaint. We still aren’t sure if she knew we complained. Maybe she learned to respect us more for caring so much for B? For advocating for him and taking charge as parents? We were absolutely the most involved parents in the NICU. Either way, we asked the apprentice on Sunday when our son would be allowed to come home. We stated the case that he had been eating off the tube (except that 9 measly ml they insisted he needed of which he immediately vomited up—who isn’t following his cues now?!), had been off oxygen for more than 24 hours and was stable, had no heart condition per his Echo, and was within normal limits of jaundice. What more did he need to pass on their scale and why were we, his parents, being left in the dark? Where was this magical checklist he had to pass that we weren’t familiar with? When asked, the nurse told us that she didn’t think it was likely he would be coming home with us that day.

Cue the anger.

Ray started becoming very vocal at this point. Right in the middle of the NICU with all of the nurses and parents around, Ray started yelling about how they were keeping us out of the loop, how they were forcing B to food that he did not want through a tube, and that the NICU is a business and that they obviously need to fill beds. Yikes. It was definitely a moment of desperation. Surely we know that those nurses and neonatologists saved B’s life. We are thankful they were there and for all the Level III resources they had to care for our son. But at this point, we just wanted to know what else our child needed to do in order to be considered “normal” again. Not feeding well is a newborn issue—not a NICU issue. A potential for jaundice is a newborn issue as well—not a reason to keep a child in the NICU. Another nurse who we didn’t love either (there were 2—the rest were awesome) yelled right back and told him that if we took B home, he’d end up in pediatrics because he was acting like a 36-weeker. We asked to speak with the neonatologist on duty. He was no help. He walked over and stated his jaundice and feeding was keeping him from being discharged and offered no support in his words. He was tested for jaundice every day and was not given the bili blanket or lights because, as they said, they don't treat for something that is not a problem. Well, if it's not a problem, then why isn't he home with us? Most parents whose children develop jaundice can rent a blanket and be on their merry way.

That afternoon, a new neonatologist was there and ready to speak with us. He made sure to explain that as long as B was feeding well for a few feedings, he would release him. He also told us that he’d like to see a less strict feeding schedule (what a concept to eat when you’re hungry and not exactly every 3 hours!) and to allow B to eat as much as he wants, whenever he wants. We were thrilled with this news, as it appeared someone finally understood our concerns and wanted our child to experience a normal schedule. We came in for our 3 p.m. feeding and he fed like a champ. 

Final field trip before B came home to live with us. To Target, of course.

We left the NICU and headed to Target for some baby items, as we were determined he would be coming home with us that evening. It was my first time out of the hospital walls since Wednesday when we were admitted into Labor and Delivery. Once we arrived back, we walked through those doors talking about how we were about to go take the “final exam” to be given rights to take our kid home. It was a huge slap in the face to feel this as we’d been trying to bring a baby home and be somewhat normal for 2 years now. We felt as though others were considering us incompetent as parents, yet every other child with “eating issues” is able to leave Mother-Baby with their parents after having that perfect rooming-in experience without any more than a “congrats, you can do it!” attitude. We wanted to feel a pat on the back from the hospital staff and the encouragement we so desperately deserved. We decided I would be the one to take the “final exam” of feeding B in front of them for the last time. 

Final exam canceled. You're free to go.

We spent that entire day on Sunday just kissing major butt. I was asking nurses their best techniques for this and that, reading ALL of the paperwork I received about newborn care (despite feeling equipped on the majority of it) in the chairs as B slept. Ray was reading The Economist to show he was intelligent and hopefully the NICU nurses would see we weren’t a couple of incapable, young kids. When we walked into those doors at 6 p.m. for his “final exam” feeding, they basically told us we could take him. We aren’t sure whether we passed the test with our behavior or if they just wanted to get rid of us… or if B really did convince them that he was fine to go home. But regardless, we were being discharged and would finally be bringing home our baby. The grouchy nurse took over at this point and could not have been nicer. We don’t understand it, but we just didn’t care at this point. We wanted out. Within an hour, we were on our way home with B strapped in his carseat in the back seat of our car. Coming home. 

The grouchy nurse had parting words for me as Ray pulled up the car:

“Just remember. Your kid is not sick, so you can treat him as normal as possible. All of his cultures, blood tests, and ultrasounds have come back negative and other than eating and being jaundice, he is totally normal."

What a concept. I seriously don’t know when the switch was triggered, but she all of a sudden realized that he was fine and that he needed to be coming home. Confused. As we drove away, we felt like we were making a jailbreak. Like they were following us to monitor or take B away. It was such a terrible experience to feel, once again, like we weren’t capable of handling things with our child. In order to give us the “full experience”, they brought a wheelchair and wheeled me out (despite being totally fine to walk) to the lobby for our final farewell—like they do for all the mothers leaving Mother-Baby. They took us out the same way we left without Andrew—when I was wheeled out with a bag full of mementos and without a baby. It was surely a numbing experience, but thankfully we were occupied with the idea that we were finally leaving the NICU. 

Under one condition.

Of course not without strings attached. The grouchy nurse told me about 5 times that we HAD to take B to the doctor the very next day to have them check him out for jaundice. It was a complete waste of a co-pay as we knew he was within normal levels and not a lot was going to change within 12 hours, but we obliged just to have our kid home. Like we suspected, the doctor told us he was fine and just to make sure he was spending some time in the sun, eating well, and pooping well. Our 2-week appointment is scheduled for Thursday.

He's home, y'all. He's freaking home.