Riley’s Birth Story – PPHN Survivor!

Posted in My Littles

I am finishing writing Riley’s birth story on the eve of her first birthday. I had notes in my phone from the morning we went to the hospital… Marking when we got there and when contractions started. We were completely unaware of how every single aspect of life was about to change. As we spent days in the NICU, I kept adding more notes, tests, emotions, triumphs, failures, visits from friends, etc. My goal was to just finish up Riley’s birth story by by the time she was 1 month… that came and went, so I was shooting for 3 months. After 6 months, I still wasn’t ready to finish it. I decided to put it away until her first birthday. So here goes!

Let’s begin the week before my May 15, 2014 due date, the baby was +4 not engaged at all and we were suddenly afraid she was breech. We had a pretty flawless pregnancy (aside from extreme anxiety issues which I had dealt with my whole life. Unfortunately they were exasperated because of the pregnancy hormones). Anyway an ultrasound revealed the baby was fine, just high. So for that week we walked and bounced on the ball. Saturday I started finally contracting 10 minutes apart. Progress! I lost the mucus plug Sunday, Monday, and Tuesday. TMI? At our appointment on the following Friday (actual due date) the baby was at +2, 1cm dilated, 70% effaced. Progress at least! But… due to white coat syndrome and anxiety, induction was scheduled for Wednesday, May 21.

I experienced more contractions through the weekend, but no other symptoms. Monday May 19, lost more mucus plug and had diarrhea (a common sign of impending labor…. Or it could have been all of the wings and ice cream I was eating), as a last stitch effort I inserted an evening primrose oil pill (a recommendation from my midwife). At 5 am I woke up with soaked pants and period cramps. I wasn’t feeling the baby move much so we immediately called the doctor and left for the hospital.

On the ride we still weren’t sure if my water broke because I wasn’t leaking and I never felt the gush/pop. Got checked at the hospital and found out my water had broke but only near the top somewhere which is why it was hard to tell it had broken. They thought they saw a little meconium but thought it could have been old blood. After a membrane sweep and a check (3cm and 100% effaced and baby was engaged at about 0) they admitted me to a room, and the fluid leaking out was clear. By 9 am I was in my labor room contracting about 15 minutes apart. The doctor came in and says “Bredin wants to start pitocin”. I asked if I could fight this and they said they’d give me two hours. Within the hour I was contracting heavily less than 10 minutes apart.

By noon the contractions were two minutes apart and getting unbearable. It felt like I couldn’t escape my body… They were strong period cramps and the only thing that helped was to moan and convulse on the table. I asked the doctor how long she thought it would take and she said “5-6 hours at least”. I could barely recover after each contraction so decided to get the epidural.

Getting the epidural didn’t hurt at all, and the relief from contractions was almost immediate. It was so good I couldn’t even tell I was having contractions. Lights were dimmed and I just focused on sitting upright and letting gravity and the contractions pull the baby down. At about 3pm the doctor checked me again at I was 6cm dilated and they were happy with my progress. By this time the epi was starting to wear off but the pain wasn’t bad at all. By 3:30 I pushed the extra epi button and was feeling great.

At 4:30 the doc came in to break the rest of my water and check me again, to her surprise I was 9+ cm dilated and the baby was really close to the exit! Queue frantic nurses and doctors trying to set up the room for delivery. At 4:36 they said it was time to start pushing. With each contraction I pushed a little bit harder until I could feel and see the baby descend. I felt her little legs have more room to stretch out and attempt to kick her way out. By 5 I knew within these next few pushes she would be out. The doctor decided on an episiotomy which freaked me out a little and I know if I didn’t get annoyed by the episiotomy, Riley would have been out one push sooner. I pushed again after I was cut and felt the head come out, one more push and her body came out.

The relief from labor and delivery was instant and they put Riley on my belly, with her back facing me, her head to the left and butt to the right. I remember thinking how good she looked from behind and seeing that dark hair for he first time. We heard one cry and Stu screamed “that was the most beautiful thing I have ever seen!” And our joy ended in that moment when the midwife quietly said “call the NICU” and the mood turned to sheer terror as the amount of people in the room doubled and they whisked Riley to the infant table. Where they started suctioning, smacking, and fussing over our baby.

I heard them say meconium and immediately thought of one of my best friend’s Hadley and her baby Cole (he was in the NICU too because of meconium aspiration). I thought that’s ok they just need to clean her up, she may need a few days in the NICU but she’s ok. Stu was starting to have a panic attack. I was yelling at him to try and take photos as I couldn’t see her face and wanted Stu to be there. He grabbed one photo and ran back to me. Looking back, that first photo is depressing. A lifeless, purple baby girl without a breath in her lungs. No one has seen that photo but us. I’m not even certain where it is.

I kept saying it was ok and this happened all the time. I took the wet rag off of my forehead and moved it to his. All of the sudden an isolet came into our room, and Riley was taken down to the NICU with a manual breathing pump in her mouth. I was stitched up and Stu was by my side, dinner came in along with family. It was sad to not have a baby to show them but I assured them that by 7 I would be in my recovery room and the baby would be stable enough to see. Well, 7 came and went and we had no update on our baby. We had to text our family and tell them not to come, and text our friends opting not to share the only photo we had.

At 8 Stu was allowed to go see the baby but they wanted to keep me strapped to the table because my blood pressure started to elevate again. I began having some panic attacks because I hadn’t seen my baby yet and no one was giving us an update. Stu came back and showed me another picture of her finally. I didn’t see the wires or machines… I just saw my girl.

Riley-Stewart

The neonatologist said she was stabilizing but her oxygen levels in her blood needed to start to rise. He was going to retest at 10pm. By this time my blood pressure was still high and they were trying to put me on magnesium because they thought I was having preeclampsia. I assured them it was just anxiety and that if I could take anxiety meds (which I had NOT taken all pregnancy), I’d have a normal bp reading. I had to argue with 2 doctors and a few nurses and they allowed me to take Ativan, which they ordered to be delivered to the room. At this time they also decided it was ok for me to go see my baby.

They wheeled me down to the NICU where I was shown my baby with goo still in her hair. I was instructed not to speak to the baby because the sound of my voice would stimulate her too much. We also couldn’t touch the baby for the same reason. After a few short minutes we had to leave to get me hooked back up to that fucking blood pressure reader and the nurse told me I could kiss the top of her head… I was sobbing uncontrollably but that was the first time I kissed her. I remember feeling her dried goopy hair full of blood and amniotic nonsense on my lips.

As we were about to leave there was a freak power surge and the power flickered off in the entire NICU. I swear every nurse and neonatologist rushed to Riley’s bed knowing she was on the vent. This leads me to believe that she was the most critical baby in there. Luckily she was hooked up to a back up generator and the power flicked back on.

I just about fainted and went into full blown panic. Talk about needing anxiety medication. The neonatologist told us he would come visit us at midnight with an update so we left the NICU and I was given Ativan finally and within 20 minutes my bp was back to normal. They decided to take my Bp every half hour, throughout the night. At one point while I was asleep my bp got so low the alarm went off.

Every two hours I was woken up to pump breast milk to ensure my supply would come in when the baby was ready to feed, and every three hours I had to get blood work done. At midnight when the neonatologist came in he said Riley’s oxygen levels had risen but not by much so they had to continue testing them through the morning. I was never allowed to leave the delivery room to go to the recovery room because they wanted to continue to heavily monitor me. I was lucky to have a really great nurse that night who at least understood my white coat syndrome. I wish I could find that nurse and hug her.

When we started the day on Wednesday I don’t remember much. Maybe I was in shock or denial and this was my body’s way of coping with it. At one point the doctors felt confidant enough to let me go to a recovery room, and I imagine this was some time in the afternoon. Stu had gone to the NICU to see the baby again and they told him 2 things that started to wear me down… An EEG was ordered because the baby was so heavily sedated that her mouth shouldn’t have been moving and it was, so they thought she was having seizures, and if the baby didn’t improve they would have to transport her to Children’s Hospital of Philadelphia.

Justin and Sue and Heather came in one by one to see the baby so it must have been about 4 pm, and I was with Justin and the doctor pulled me aside and said that the movement in her lips that we were seeing was not seizures and I was instantly elated and cried tears of joy. She also said, when I could grab my husband and come back she wanted to discuss something with us. Justin and I walked out to the waiting room and I told Stu she wasn’t seizing. We cried and held each other and then walked back to the NICU to talk to the doctor. It felt like our first triumph.

We were brought into a back room with one of the nurses (Kim) and neonatologists. They made the decision to send the baby to CHOP. An ambulance had been ordered and they were on their way with a drug that would essentially cure Riley, nitric oxide. This is where I began to really break down. It was no longer ok in my mind. I started blaming myself and feeling like I had delivered a broken baby… I thought all of this was my fault. I felt like I had completely lost control of the situation. I didn’t want to leave the vicinity of my baby. She was mine and she needed to be with me. I didn’t want to go home without her. We had to sign a barrage of paperwork allowing her to leave, and the ambulance would be there within the hour.

We went back up to our room, and I asked that the IV finally be removed from my fucking arm. We cried alone on the bed for a minute and then ultimately decided that we needed to do everything in our power to get to CHOP with our baby. The nurse in the recovery room supported our decision and contacted my OB to get the ball rolling. Less than 24 hours after giving birth and still in a hospital gown I was discharged. Apparently when you get discharged you’re supposed to fill out a post partum depression form, and given my condition, the nurse “lost” the form because she knew that if the psychologist spoke with me, they wouldn’t have allowed me to leave. Depressed didn’t even begin to cover it.

We walked back to the NICU to send Riley off and the transport team took down my phone number. I told them to call me if anything happened and to let me know when they got there safe. We left the hospital and stopped home to grab a few more things. It almost felt like we weren’t welcome in our own home, knowing we shouldn’t have been there without our baby. We stopped at Wawa for dinner and then headed up to Philly. While on the way the transport team called to say Riley was checked in and stable, but they had to administer nitric on the way up. If they hadn’t come with the nitric, would Riley have died on the way to Philly? Would she have died at Atlanticare if she stayed another 30 minutes? We couldn’t think this way but we did, but the most important thing was that she was stable.

We got to CHOP, left everything in the car not knowing where we would be staying that night, and somehow quickly found our way to the “Baby Girl” Stewart. She still hadn’t even been technically given a name because she was whisked away so quickly. When we saw Riley, for the first time we finally felt relieved. Another triumph. The male nurse working on her was incredibly kind, intelligent and comforting. If I ever had a chance to talk to him again, words will not be able to express my gratitude for his encouraging and positive demeanor. We were allowed to talk to the baby finally, and touch her skin. They transported my colostrum up from Atlanticare and I was encouraged to pump every 3 hours at chop in these amazing pumping rooms. They also had a pump in Riley’s room. The nurse said I could take the colostrum and with a Q-tip, rub it on Ry’s lips and mouth. They called it oral care and it was the first time I could connect with the baby. Riley was just getting electrolytes and nothing else at this point.

chopnicu

The nurse explained to us that baby officially had Persistent Pulmonary Hypertension of the Newborn Infant (PPHN) which means that the arteries in her lungs were supposed to pop open when she took her first breath, but instead, they stayed the size of a pinhole. This put a tremendous amount of pressure on her heart and lungs, enough to leave her in critical condition. The nitric opens up those arteries for her. Once she got the drug, she was essentially cured, but didn’t know how to breathe on her own at that point because a ventilator was doing it for her.

After talking with the nurse we were starting to get sleepy as it was close to or after midnight. CHOP had set aside a family room for us just feet from the NICU room. When we felt confidant that the baby was doing ok, we went to our family room and held each other. We both felt at ease knowing that the baby was in the best possible place she could be. That night Stu got up with me every three hours to help me pump. We checked on the baby and the nurse was so confidant that the baby was doing great.

When we got up Thursday, Stu asked the nurses to let us stay in the room an extra hour to let me sleep a little. I still was bleeding a ton, had no energy and hadn’t pooped since Monday. I was not taking care of myself at all.

By 9am we were up and in Riley’s NICU room because we were told the chop neonatologists were doing their rounds. We sat in the NICU room with 2 neonatologists, 1 neonatologist doing her residency, and a good 3-5 additional nurses and interns as they discussed the fate of Riley. It was a lot of medical jargon including brief discussions of the results of a brain scan which showed an incidental finding of a brain cyst (which we would later have to follow up on), the ordering of a spinal tap for later that day to test for meconium infection, a lung X-ray which showed no meconium, and ultimately the decision to start weaning the baby off of the drugs that she was on because the nitric which was administered had essentially cured her. Her blood oxygen levels were almost 100% better than they were the day before. When Stu and I heard this, we started to cry tears of joy. Maybe it was because the night before we could finally interact with the baby, and it gave her the strength to fight to get better. It makes you think.

chop-2

Then they decided to start turning down the dopamine which controlled her blood pressure, morphine to mask the pain and keep her asleep, versed (which paralyzed the baby without putting her in a coma), turn down the nitric, and start to turn down the ventilator to start getting the baby to breathe on her own. All of Thursday was just dependent on how Riley reacted to having them turn down the meds. Well…. SHE DID AWESOME. They gave her the spinal tap too, and it came back negative for infection. This is when chop decided that the baby had pulmonary hypertension but they believe it was not caused by meconium aspiration. The neonatologist said that sometimes babies are just born with pulmonary hypertension. I asked her repeatedly and she promised me that there was absolutely nothing I could have done to predict or avoid this from happening.

By Thursday night they decided that Ry was doing really well breathing mostly on her own, and if she continued on the path, they’d be able to pull the vent by Friday morning. We signed up for the family room again and we were lucky to have received it. That night our friends Ken and Christine came and I think Coh at some point. It was amazing to have so much support from our friends and family in person and via text. Telling our story as it was happening to everyone, helped the situation and made us feel less alone.

We went to bed that night thinking that by morning we would hopefully be able to see our baby without a vent and perhaps she’s even be off enough drugs that she would be awake. Friday we woke up and our dreams came true, Riley was 100% breathing on her own! No vent! She was off dopamine and versed completely, and was slowly coming off of the morphine. The nurse accidentally administered antibiotics in the same IV line that the morphine was being administered in, so she got a small extra hit of it, so she was a bit sleepy.

family-room

When we saw her again later that morning we heard her finally cry again (with her eyes closed because she was so sleepy) for the first time since that second she was born the previous Tuesday. Her voice sounded hoarse and the nurse (who we also ended up having a really good connection with) said it was because the vent caused it to be a little scratchy. They put on an 8mm nasal Cannula to give some extra oxygen just because the baby was a little lazy with her breathing from never having been challenged to breathe before.

riley

As the neonatologists did their rounds they praised Riley for having “one of the fastest turn around from persistent pulmonary hypertension of the newborn infant that they had ever seen”. We were so proud of our baby girl. They said they would drop her down to a 2mm nasal cannula and hopefully she would be off of it by Saturday. This means the only thing she was on at this point was oxygen through the Cannula, antibiotics (ampicillin every 4 hours, genomicin every 24 hours) that they thought would fight the meconium and anything else that she could have contracted administered through one umbilical lines (there was a second line still in her that was for the morphine, versed and dopa), leads for her respiratory rate, heart rate and bp, a pulsox on her foot for blood oxygen level, and electrolytes to get nutrients.

They opted to insert a feeding tube and finally Riley was able to get my colostrum that I had been pumping! By this day I was engorged and my milk was in. CHOP was so great with saving every ounce of my breast milk for Riley. They were so encouraging and proud of me for being so dedicated to breastfeeding, it really made me feel like I was finally able to do SOMETHING to help my daughter. I think this is why I am so pro-breastfeeding and am so outwardly proud that I am doing it. Riley was given nothing but non-natural medication and nutrients for the first 4 days of life, it was really important that for the next year of her life I gave her nothing but organic all natural breast milk.

The doctors then told us that the only thing they wanted to continue for another few days was the antibiotics just in case. They said they wanted to do 7 days which would give us a discharge date of Tuesday. FINALLY an end in site. We were absolutely thrilled. As the doctors finished speaking with us they asked if we had any questions. Of course I did…. “WHEN CAN I HOLD HER?” I said with the biggest smile on my face. The one really sweet neonatologist said “oh my gosh that’s right! Let’s pull the one umbilical line right now and you can hold her!”

Within 20 minutes she was ready to be held. I was able to pick her up from her bed and immediately started sobbing. This… THIS was finally our moment of birth and elation.

holding

Our baby girl was going to be ok. The nurses were watching through the glass and crying as I held my baby for the first time. She was beautiful. Even though she was asleep I put her on my chest and she reached her little arm up. She knew she was in my arms, I’m sure of it. Stu held her as well and sung her the song “baby girl” by Anthony green. It’s something we sang to her throughout my pregnancy. It made me cry. It was a really sweet moment. After a long while we put her back and went to get lunch.

When we returned to hold her again, she was finally starting to wake up. I believe that for the first time since being born, she opened her eyes in our arms. I was holding her and Stu was behind me and she just stared at us with beautiful bright eyes. We absolutely fell in love. Friday was one of the best days of our lives because we had our healthy beautiful baby in our arms and we knew we were going home with her in just a few days.

baby

Saturday morning we woke up and waited for the hospital rounds again. The doctors came in and quickly went over Riley’s prognosis. I say quickly because she was doing so well and was only now on antibiotics so they didn’t have much to discuss. They told us, “Good news! Riley is doing so well we can send her back to Atlanticare to finish out her antibiotics!” At this point we weren’t really given the option to stay at CHOP, maybe because monetarily it didn’t make sense and the doctors couldn’t justify CHOP prices to insurance companies so it was better to send us back to Atlanticare.

It was mixed emotions though because while we were so happy that Riley was doing so well, we didn’t want to leave the comforts of CHOP and go back to Atlanticare where we couldn’t stay in the same room as Riley overnight. But ultimately we had to do what we had to do. We only had to have her there until Tuesday at this point and it was just a few days away… We can do this we thought! Wrong. We had no idea that leaving CHOP would prove to be the worst decision yet.

The highs of Saturday were that before we left in the afternoon, we had a visit from my parents who got to hold the baby for the first time, as well as CJ and Deb. When my parents arrived, my mom came back to meet Riley and chop let me try to breastfeed for the first time. It was a disaster of course with no latch, but I was grateful for the opportunity. We also found out that CHOP would be doing the driving back to Atlanticare and Tyler’s mom would be on the transfer team… And I was allowed to drive in the ambulance with the baby.

Seeing her strapped down in the isolet was a little nerve-wracking, but she slept the whole trip. When we got to Atlanticare stu wasn’t with me yet, and we got wheeled into the NICU. It immediately went to shit and this is where I started to lose it again… because Riley came from another hospital, they had to keep her in an isolet until she got tested (more needles and pokes) for MRSA. And we had to wear gloves and a medical gown to touch her. This means getting a nurse to get the baby out, and suiting up before we got to hold her.

When we got to Atlanticare I started to lose my mind again. Literally lose it. Stu drove separate from the ambulance and I called him crying when we got there to tell him we made it, but he thought something was wrong with the baby which was a mini panic attack for him. We arrived at 7:15p and the nurses were switching shifts, I was completely engorged and no one was helping me to try and nurse my baby, and they pulled the feeding tube within minutes of us being there and said “we have to give the baby a bottle since you can’t be here to nurse her 24/7”. It infuriated me because I was allowed to breastfeed skin to skin, but when I wasn’t breastfeeding they wanted me to wear gloves and a gown. How counterintuitive?

Within minutes of being at Atlanticare we regretted leaving CHOP. The nurses and doctors we had that first night back at Atlanticare were awful and just tried to placate us. I literally thought I couldn’t feel worse. I remember the one neonatologist saying “in a few days we can take Riley out of the isolet” and I was like what?? In a few days were supposed to be going home. It was like all of the sudden the doctors had a new plan and there was no end in sight. The finish line was taken away from us.

Going home that night was the first night at home without our baby. We were exhausted mentally and emotionally and were blindly traveling a bumpy dark path. Still I woke up every 2-3 hours and pumped breast milk out. 7 am Sunday we got up and traveled back to Atlanticare. I was determined to try and get Riley to breastfeed. When we got there we asked for a lactation consultant but because it was Sunday, and Monday was Memorial Day, we wouldn’t have any help until Tuesday. I reached out to some mom friends who recommended I try a nipple shield. I busted that puppy out and VOILA! Riley finally latched. It was an awful, painful latch, but she was getting something.

dad-and-ryWe were letting her try to breastfeed and then supplementing with pumped milk. We still had the awful nurse on Sunday so it wasn’t helping the situation. That’s all I remember about Sunday, but Monday when we got there they told us the MRSA came back negative (shocker) so we didn’t need to suit up to hold the baby, but she was still in the fucking isolet. We had a new, more helpful nurse and we were able to sponge bath the baby. We were trying to talk to doctors because Tuesday was now the following day… The day chop told us would be the last because it was 7 days after she was born and 7 days on antibiotics. No one was telling us anything and it was infuriating. We went home with little hope that our baby would come home Tuesday.

Monday was close to our lowest low because there were just so many unknowns. I felt like they were keeping my baby from me for no reason other than to get money from our insurance. I was still nursing with the shield and it fucking hurt. She wasn’t getting much off of me so I was still pumping all day. I wasn’t thinking straight. I was losing my mind literally. We were spending 14+hours just staring at our baby in an isolet, in the hardest fucking wooden chairs. Coming home to pass out and waking up to do it again.

When we woke up Tuesday we finally got some answers. They told us they ran a CRP test, something they ran the day she was born as a baseline, and it basically tests for levels of a stress hormone which could indicate infection. She was at a 20 when she was born and a week later it was only down to 18. The average person is less than 2. They thought the infection could be from meconium but I knew it wasn’t because chop never found the infection when they ran their tests.

I was convinced that Riley was stressed just from the trauma of being in the NICU and literally getting poked and prodded CONSTANTLY. Think about it, at this point she had gotten ampicillin every 5 hours, genomicin every 24 hours, blood sugar taken daily, an EEG, an EKG, echocardiogram, an MRI of her brain, was on a venthilator, got nitric administered, morphine, verced, spinal tap, pulsox to test blood oxygen, blood drawn for countless tests including MRSA, you name it, low Billie Reuben and so much more. and now getting poked for these stupid CRP tests. You think anyone would be stressed let alone a baby who’s 7 days old.

So I asked what their plan of action was because obviously the fucking antibiotics weren’t working. They said they wanted to keep her on antibiotics for the whole 10 days (which put us to friday at 9pm) and her CRP levels had to go down a lot more. They said they would pull the umbilical line and put in an IV in her arm. So they did that and put the arm in a splint Since it was so tiny and they didn’t want it ruining the IV needles. She looked like she had a club hand and kept smacking herself in the face with it so they wrapped the whole thing in a diaper. I was more at peace this day because they made a change, we had a great nurse and we were informed as to what was going on. We had an end date of potentially Friday.iv

It at least gave us something to focus on. Because they pulled the umbilical line, she was able to come out of the isolet and into a regular bed! She also got moved to the other side of the NICU for the less severe cases and those closer to leaving. I could now pick my baby up at anytime and all she had was her club hand which only got hooked up to the IV every 6 hours for a half hour, and her leads for respiratory, pulsox, and heart rate. I met with the lactation consultant who gave me great pointers and finally we had a latch with no nipple shield!!!

At this point I was spending 14+ hours a day at the hospital only leaving to come get Stu in the afternoons. I couldn’t drink coffee because I didn’t want it in the breast milk. I couldn’t eat in the NICU so I was skipping meals just because I didn’t want to leave. I would pump in the middle of the night and just cry because it was supposed to be the baby on the other end and not the fucking pump. Wednesday Stu decided to hang back and mow the lawn and get some errands done, so it was just me and the little one.

bed

I remember Wednesday morning Riley just staring at me when I got there. It was a moment I finally felt like what I was doing was paying off. One of the nurses looked at her and goes “well, she knows who her mommy is!” It was such a small comment but it meant more than she would ever know. No one else was going to be in that hard wooden chair every day to love and hold that baby. At that moment that was the most important thing in my life. I needed to be there, I didn’t care. Life was static. I wasn’t working, I wasn’t going out, I was focused on just purely loving my baby.

bright-eyes

The only other thing I could do was continue to pump and breastfeed her. Breastfeeding was still painful and Ry seemed to know me so well it just was a comfort thing to fall asleep when I was holding her so we couldn’t keep her awake long enough to eat, despite tapping under her jaw, undressing her and putting cold water on her head. I knew if we couldn’t get her to eat and gain weight, it would delay us and we wouldn’t be able to go home so I was continuing to supplement with pumped milk. Funny looking back that I was nervous she wouldn’t gain enough weight. I knew when I got home we would exclusively breastfeed so I was just focusing on trying and more importantly making sure I had a good supply. I filled up the freezers at the NICU and started stockpiling my own.

While holding the baby on Wednesday the neonatologist who made the decision to send Ry to chop came over and very calmly said, “there is a small pit on Riley’s ear. This can sometimes mean there is a hole in her kidney. We are going to run a renal ultrasound.” It was like a blow to my stomach again. Another test to see what’s wrong. And then she goes… “The original EEG they did was actually inconclusive. So we need to do another one. The neurologists will be here soon.” WTF?? So now she still could be having seizures? Neurology got there and because Riley didn’t get enough breast milk off of me and she started fussing, they gave her sugar water. Ugh. I had to leave so they could do the test but before I did they tried to flush her IV… It pulled out. My mom was there at that point and she saw a taste of how emotional it was. So they had to poke riley again and give her another IV line. I left so both of these things could be done and came back with Stu who was feeling guilty just for having not been with us the whole day.

It was like we couldn’t win being there and focused on the baby, and we couldn’t win being away. When we came back Riley was clearly crying hysterically and was red and tuckered out from having gotten repoked for the IV. Poor girl. We stayed for her last genomicin treatment of the night through the IV. I held her while she was getting her antibiotics because I wanted her to be as relaxed as possible when she got them, and with me she was just a rag doll… She melted into me. It may not have any truth to making the antibiotics work more, but I would say “Ry let these drugs get rid of whatever infection you have. Put them to work!” I wanted her body to get better as soon as possible.

That night they did the renal ultrasound and we got the good news on Thursday that her kidneys were just fine. PHEW. So the pit in her ear is nothing to be concerned about… Just an unexpected congenital malformation that she will have forever. Stu and I had a good schedule worked out where he would come with me in the morning to hear the doctors do their rounds, we would leave to go get lunch at dunkin donuts (I was finally eating SOMETHING) then he would leave mid day and come back at night for the genomicin treatments.

On Thursday one of the family services workers came to my NICU space and “knocked” on the curtain. My dad was visiting us and holding Riley. She said “good news!! It sounds like you are going home soon!! They said maybe tomorrow? The family sleep room is open tonight so you and your husband could stay over and spend the night with Riley!” I could have kissed that woman. I was absolutely elated. She couldn’t confirm that we would definitely leave on Friday but chances were high! I was just thrilled that I could spend the whole night with my baby and my husband.

I called Stu and we rushed home to pack and get stuff for the night, including a going home outfit for Riley just in case. When we got back to the NICU we were led to the family room and our baby was wheeled in too. The nurse said, very bluntly, that even though we were staying the night, the likelihood of us leaving on Friday were slim because they don’t normally discharge at night and the antibiotics were set until 9:30p, they also need to do a hearing test.

I asked why they couldn’t do the hearing test now (because I’d of course fight to leave with the baby at 9:30p the next day). They said the side affect of being on genomicin is hearing loss, so they want to wait until the last dose to check her hearing. Awesome… One more test to be worried about. She also said they repeated the CRP test earlier and the results would be in on Friday. Regardless, we accepted what could potentially happen with us not being able to leave on Friday. For now our baby was 9 days old and it was the first night sleeping next to her for the whole night.

It was of course a disaster for a number of reasons… They put on an amber alert bracelet and despite it being so sadly tight on her already bruised and tattered body, it kept going off. So a nurse had to rush in and make sure we weren’t stealing our own baby (she was mine anyway… And don’t think I hadn’t thought about just leaving with her MULTIPLE times thus far). Breastfeeding was still awful and the nurses had to track every time she fed, and every diaper she had. So every hour through the night the nurse was running in to take notes. Riley was screaming from about 10pm until 7 am and looking back it was simply because she wasn’t getting enough off of my boobs because she didn’t have a good latch.

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At 7 am even though the nurse “said” the baby had enough to eat, I pumped and gave her a bottle. she finally fell asleep. The nurse thought because she had been on me all night that she wasn’t hungry, but the kid still didn’t latch well and definitely wasn’t getting enough. It was frustrating because I still was at the mercy of the hospital trying to make decisions for my baby. I was happy when I finally pumped and gave her a full bottle. We both got a few hours of sleep while Stu left to get coffee (we should have counted how many cups of coffee he had).

When he got back we went back into the regular NICU. We had the nurse named Kim this day who was actually the nurse who was there when we were sent to chop. Thank god for this kindhearted woman. She said hello and that the doctor would be around to talk to us. A very blunt neonatologist came around to us and said “the CRP is down to an 8. Still to high to go home. We will repeat tomorrow. We will do her hearing test tonight. Oh and by the way, there’s a hole in Riley’s heart and a cyst on her brain. You will have to follow up on these things along with developmental appointments when you leave.” We both started crying. Almost hysterically crying.

The doctor walked away and Kim very sweetly said “what part of that was hardest to hear?” We were both crying for different reasons. I was crying because I reached my limit. I didn’t know that I could handle any more of the roller coaster (I had probably thought this multiple times over the duration of her stay in the NICU thus far, but this time it was seriously weighing heavy on me). Why was there so much wrong with my baby? It was a perfect pregnancy! And now she has a cyst on her brain and a hole in her heart? I don’t want follow up appointments. I don’t want to have them take more tests. I just want my baby… Look at her she is fine! What did I do wrong to ruin this child? Stu was crying because he just wanted her to be well. He wanted her to get all the medicine and appointments she needed, but a cyst on the brain and hole in the heart sounded severe… To him she was a critically ill baby because what human just lives with a cyst on their brain. We went home defeated and without our child again.

We picked ourselves up and took a deep breath. We stayed strong because we had no other choice and we headed back to the NICU that afternoon. That night we decided to go to dinner with Heather. Of course I felt guilty. Riley is sick. So I barely enjoyed it. I knew I needed to try to enjoy the time away, or at least not be sad, but deep down I KNEW this was not where I was supposed to be. I was supposed to be at home with baby vomit on me, sleepless, unkempt and just loving up on my baby, Ugh. That night Heather came to the NICU to hang out with Riley. One of the sweeter NICU neonatologists stopped in to say hello towards the end of the night. Stu asked her about the cyst and hole in the heart and she reassured us that if EVERY baby had to have a brain scan, that many of them would have cysts. She also said that many people have the PFO/heart murmur and it’s really no big deal.

After talking to her we felt better. We still just wanted our baby home though. After a long day, we went home again, without our baby, my alarm scheduled to wake me up every 3 hours to pump. Saturday morning (May 31, 2014) we woke up.. we were very silent with each other as we got dressed that day knowing that Riley would have a repeat CRP test this morning, and a hearing test. We knew she finished her antibiotics over night and if her CRP test came back low enough, we could potentially take her home. Neither one of us wanted to get our hopes up. Neither one of us wanted to jinx it. As we were walking out the door at 7:30 am, my huge diaper bag in tow with my breast pump and snacks for the day, Stu said very softly “Should we bring an outfit?”… meaning her going home outfit. I looked and said “I packed one just in case.” That was all we said that whole morning.

I am crying now writing this…

We got to the NICU and got buzzed in.. started washing our hands at the sink and one of the Neonatologists smiled hugely and said good morning. I swear, the NICU that morning was brighter, quieter, and sweeter. We walk over to Riley and Kim is holding her. Kim immediately tries to hand her to me and says “She just woke up!” Before I could even grab her I bumbled out the words “Did she have her CRP test?” Kim goes “YES! SHE IS AT A 2! YOU’RE GOING HOME!” I yelped. I almost buckled at the knees and immediately lost my breath. Stu was walking over and said “What? What happened?” Kim told him and he grabbed his mouth and his eyes started to water. We hugged each other in the middle of the NICU, both of us crying.

I finally grabbed Riley and kissed her. Then we asked about her hearing test, knowing that there could have been loss from the genomicin. She aced it. No hearing loss for this little babe. BUT we do need to follow up when she is 2 years old just to confirm. At this point I didn’t care. Kim told us that there were some procedural things that needed to happen and that the neonatologist would come talk to us. As it happened, the neonatologist who decided to send us to CHOP came over and sweetly told us that she was discharging our baby. She said she needed 2 hours to do paperwork and last minute checks. SO for the last time, we went to Dunkin Donuts and got breakfast.

It was an indescribable feeling while we sat there. We could barely eat from excitement, but we both kept saying “Wow this feels like a huge weight off of our shoulders” and “I feel so much lighter.” Literally the knots in our stomach, headaches, and heartaches were GONE. We walked back into that NICU a little taller, and with smiles ear to ear. The pulsox was already off Riley and Kim was like “Screw it, I am just going to take the leads off too..” Ha. She was awesome. NO MORE WIRES! After 11 days of life, my girl was finally not hooked up to anything! I was like “Can I put her outfit on her?” That was probably the last question I had to ask permission of with my daughter. I got her dressed and her little newborn suit was still a big… PHEW!

drs

We spoke with the neonatologist and Kim for a little while about just some basic care for the baby… normal stuff that we would have gotten had we had a normal delivery. At the end the neonatologist said “you are an absolute role model for other NICU moms with your dedication to breastfeeding. You have truly done an amazing job. This baby will benefit tremendously from your breastmilk.” Even the nurses a few babies over were crying. It was very sweet of her to say and by the reaction of the nurses, not something that was said often. I think about this a lot and it definitely drove me to continue breastfeeding every time it became challenging. My baby was a huge chunk and that means HEALTHY.

Anyway, we plopped Riley in her carseat and got her in the car. Stu’s mom came last minute to take a few photos and she was of course crying. We never drove so careful in our LIVES. I am talking 5 miles an hour merging onto the parkway careful. We get home and take a picture.. an epic picture. And then unpack her from the carseat. Take a few more photos. Into “the lamb” (rock n play), and Stu starts playing guitar.

famFINALLY. Normalcy. This… THIS is what I wanted. Immediately we invited family over. I wanted so badly just to forget what happened and I just wanted what a normal 2 week old baby would be experiencing. Justin and Sue were the first to come, followed by our parents and grandparents.

After this day it was a bit of a blur, instead of every day feeling like a month, every month goes by in a day.

After her stint in the NICU we have had the following appointments in addition to her normal Pediatrics appointments:

  • At home nurse 1 week after she was home (normal)
  • Cardio (two appointments, the PFO closed when she was 6 months old)
  • 
Nephrology (at her second cardio appt she was found to have high blood pressure, the nephrologist said it may be a blood clot passed from an umbilical line in the NICU that went into her kidney. After a normal bp reading we decided not to go to any more nephrology appointments. I had to put my foot down somewhere)
. The worst part about this was that we had to strap her down to get bloodwork done from her arm. It was awful… they use the same butterfly needle that they used on me when I was pregnant.
  • Neurology (we opted not to sedate her and do another MRI because she was developing so well. We did find out that the cyst was in the caudophalmatic region if you are interested. The neurologist believes it has dissolved)
  • Ophtamology (her eyes were swollen 8 weeks after birth and we thought she had a lazy eye. That has since resolved)
  • 
Developmental (she was developing normal at 3 months and 6 months, we have one in a few weeks and then every 6 months until she is 2 years old)

Breastfeeding was a true challenge (and still hurt terribly) until she was about 6 weeks old. After that point she skyrocketed and became the fattest baby. Literally she was a >99%. Hah. I take her fatness as a compliment to my dedication to breastfeeding. At her 6 month appointment the pediatrician was looking at her thighs and goes “Seriously this kid could be a poster child for an exclusively breastfed baby.”

I know I talk about breastfeeding more than the average breastfeeding mom, and non-breastfeeding moms talk a lot of shit about how breastfeeding moms act like they know best or try to convince others to breastfeed… but I read an article about breastfeeding moms who make it 6 months or longer do it because they usually have some underlying reason. My child was sick and I could not even hold her or talk to her for DAYS after she was born. Literally the only thing I could do for her was build up my supply of milk, pump it, and store it safely. Given a task of breast pumping your milk when you are otherwise helpless would probably influence and encourage any mom to be passionate about the activity. I am a big advocate for breastfeeding, and I am grateful that I was blessed with a big supply. I also know a lot of mommas who have tried to breastfeed and because of reductions, work schedules, or low supply, they were unable to. They are not lesser mommas. They have beautiful, smart, amazing babies. We are ALL just doing the best we can.

Riley’s medical bills for 11 days totaled over $250,000. All her follow ups pushed that over $300,000. Thank god I married a teacher with amazing health insurance. We’ve paid $0 (but… Over $1000 in copays… Still not complaining!)

Riley was cared for by approximately 30 different nurses and 2 transport teams. And at least 10 neonatologists viewed her charts. That doesn’t include the pediatricians or follow up CHOP appointments.

A few of the CHOP neonatologists we owe our deepest thanks to: Jennifer Tioseco, Ann-Johanna Tiaconne, Ursula Nawab. There is one more that we are still in search of the name of. And if I ever find the name of the incredibly kind and intelligent male nurse who was with Riley the whole first night at CHOP, and encouraged me to breastfeed, and set us up in our “family room”, I owe him. He was the calm optimistic character that we needed at that moment. Dr.Hopkins is Riley’s CHOP neurologist, and if she has the migraines I had as a kid, I am taking her there in a minute.

My reason for writing this is not to get your sympathy or empathy. I hate unnecessary attention. BUT I do firmly believe that there is not enough support for NICU moms. Post-partum depression is a real thing, add a sick baby and you have a recipe for disaster. I googled Persistent Pulmonary Hypertension of the Newborn infant and found very little. According to Dr. Google it happens in every 1,500 – 2,000 babies, 1 in 10 of those babies die, and can be caused by a number of different things… meconium aspiration, stress during pregnancy, a stressful labor, waters being broken for too long, the list goes on… there is no way to tell for sure what caused it though.

I am lucky in the fact that my baby was only in the NICU 11 days. Some moms are in the NICU 3 and 4 months or more. I can not even imagine and my heart truly goes out to those women and families. Riley left the NICU with real no lasting ailments from Pulmonary hypertension specifically, and I am beyond thankful for this and think about it DAILY. Yet I still find myself blaming myself for her having PH in the first place. I longed for that moment when I delivered and they put the baby on my chest and we could have just stared at each other. I wish I knew what it was like to be with my child on that first night instead of hooked up to a thousand monitors and thinking my child was going to die. A child I didn’t even know yet. I felt horrible for my husband, who’s nervous to begin with, who couldn’t have that proud dad moment of just enjoying watching his child be born. I relate every issue or hiccup to her being in the NICU (trouble breastfeeding, separation anxiety, Stu being nervous about taking her out.. etc). I am absolutely scared shitless to have another kid because I don’t want to have this happen again.

BUT if in the end I get another Riley, then it’s worth it. I would have done this all again to have this child. We will do this again. We will have another baby (in a few years… don’t push it!) and we hope that this won’t happen again, but if it does, we hope that baby will be as resilient as Riley was, and the end result will be the same.

Thanks for reading. If you know a momma who is or has been in the NICU, just tell them to continue doing the best they can, and that they are being a good mom. That’s all they need to hear.