Part 3: Readmission and Transfer

The X-rays performed on Porter showed fluid in his lungs.  We were told it could be pneumonia, aspiration or aspiration pneumonia.  There would never be a way to tell for sure.  They began treating Porter for pneumonia with antibiotics, though they were assuming he had aspirated.  I believe they made this assumption because of his feeding difficulties related to the fluid retention from the sugar meds.  I asked if this could be pneumonia as a result of his surgery.  They told me no.  I think they lied – or tried to sweep that possibility under the rug.

Before they made the decision to readmit Porter to the NICU, a PICU doctor had come down to speak with us.  He did a pretty good job of making us feel like shit.  We told him that because of all Porter’s difficulties, the only way we could get him to eat a substantial amount was to feed him in a side-lying position.  This doctor made it seem like we were terrible parents for doing this because he could aspirate easily in this position.  We didn’t come to the decision to feed him that way on our own, the NICU taught us how to do it.  When the ER staff talked with one of our Nurse Practitioners in the NICU, I was so happy that I wouldn’t have to deal with this doctor anymore.  5 minutes was long enough.

We moved back up to the NICU.  I stayed the night with Porter.  Even though it was against the rules, one of our favorite NP’s brought me a turkey sandwich and a soda that she got from the labor and delivery unit.  She had the night nurse get me a bed and pillows.  And she gave me her iphone charger since my phone was about to die.  She told me she wouldn’t be back for three days, but she stayed overnight to check on me and Porter in the morning.

We all thought that Porter had aspirated.  We all assumed it was because of the side effects from his meds.  We decided to stop the sugar meds.  We had been told that he would hopefully outgrow this sugar issue anyway so we decided to give it a try.  A normal range for his blood sugar is 70-120.  The majority of his were in the 50s – 70s.  It was not a good sign, but they also weren’t critically low.  We just made sure he was fed every 3 hours around the clock and hoped for the best.  His fluid retention and a lot of the congestion began to dissipate.  The congestion never completely went away.  We began to think that maybe it was a coincidence that the congestion began around the same time as the medicine was started.  I asked about an ENT consult.  There was no pediatric ENT at our hospital.

Porter remained on oxygen through a nasal cannula.  He was having multiple monitor violations a day.  His heart rate would drop, his oxygenation would drop and his respiratory rate would go up or go way down.  It seemed worse than when he was first born and under 3lbs.  We knew that until his lungs healed, which can take a long while, he would probably continue to set off his alarms.

We started talking about a transfer to Children’s Hospital of Philadelphia so that we could get an ENT consult and have their endocrinology team look after his blood sugar issues.  We were forewarned that they would very likely restart his sugar meds because they won’t accept anything less than a 70.  We decided on the transfer right before the Memorial Day holiday so had to wait until the following Tuesday to request a transfer.  They were able to transfer him that day.  I rode in the front seat of the ambulance while Porter was in an incubator in the back along with two nurses from CHOP.  They were ‘tag-teaming’ him as they said.  One was holding his pacifier and rubbing his head while the other was patting his bum the entire ride because he wasn’t happy.  I wasn’t happy either.  Have you ever ridden (is that a word – ever since I was pregnant/became a mom my grammar has gone out the window) in an ambulance?  The suspension is awful.  I couldn’t see to the back, but I envisioned Porter flying around in his incubator over every little bump in the road for the hour and 20 minute ride.

I lied to you.  This post is getting long so this will now be a 4 part story.  Sorry.



Part 2: The Worst Night of Our Lives

WARNING:  This post contains traumatic events.  

Porters Journey - part 2 4320

Porter was home for two days when he stopped breathing.

It was 10pm.  He was in his car seat.  We were about to leave for the hospital.  He mumbled, gasped and then there was nothing.  I yelled for my husband to get the neighbor as I called 911 and fumbled to get Porter unbuckled from his car seat and out of the truck.

Our neighbors are doctors.  One of them came to the door and rushed out to help.  He checked for a pulse,  couldn’t find one and started chest compressions.  Kyle gave Porter a shot of glucagon to immediately raise his blood sugar.  It was prescribed in case Porter ever became unresponsive or had a seizure.  We don’t think he had low blood sugars, but weren’t going to take any chances.  Porter cried.  I had to repeat my address four times to the 911 operator before she even asked what my emergency was.  It took eight minutes for anyone to arrive.  The first responder was a cop.  He was unable to untangled and set up his oxygen tank before the ambulance showed up.

The EMTs loaded Porter into the ambulance and Kyle went in behind them.  He yelled to me that I should be with Porter since I had his history down to a T.  I ran over and got in.  They weren’t able to properly secure Porter to the stretcher, so I basically pinned him down the entire trip to the hospital.  They couldn’t find the appropriate nasal cannula to provide him with oxygen during the ride so they decided to ‘bag’ him.  The girl put the mask part over his nose and mouth and asked the other EMT how many breaths she needed to give an infant.  He decided to use this moment as a learning opportunity for whoever this girl was.  A new EMT?  An intern?  He said, “I don’t know.  How many breaths do you need to give him?”  I’m sorry, could we just give my son the assistance he needs please?  This isn’t the f$&%ing classroom.

We arrived at the hospital and were whisked in.  They quickly hooked Porter up to oxygen, monitors, and an IV.  They began taking blood and X-rays.  They asked for his history and what had happened.  I filled them in on his first two months of life.  Then I told them we had noticed he had a blue tint to his face and his breathing was sporadic and that’s why we were headed to the hospital.

I had one of the ER staff call up to the NICU to let them know what had happened.  And although she fought me on it, since she said Porter would be going to the PICU (pediatric intensive care unit), she obliged.  They told her they wanted Porter back in the NICU and I was relieved.  They already knew him.

Looking back there are a few things that I missed.  The two days after his surgery and before his discharge, his skin tone was off.  I assumed it was just part of the recovery process.  The nurses and nurse practitioners looking after him weren’t the ones who were normally with him.  If it had been our favorite NP or he had nurses who knew him better, maybe this never would’ve happened.  Maybe they would’ve looked at him and known something was off.  I should’ve known.  I was so excited to have him home that I think I overlooked the signs.

I’m so thankful that we live next door to doctors.  We wouldn’t normally knock on their door and ask for medical advice, but this was an emergency and we were freaking out.  If they hadn’t been home, or we didn’t live next door to them, Porter’s heart wouldn’t have been beating for far longer.  As we were about to leave for the hospital, Kyle had noticed Winter peed through her outfit.  He asked if there was time to change her.  Porter seemed okay at the moment, so I said yes.  I waited a few minutes before putting Porter into his carseat.  If Winter hadn’t peed through her outfit, we would’ve been en route to the hospital when Porter stopped breathing.  It was 10pm and dark.  There would’ve been road noise and engine noise.  Would I have noticed that he stopped breathing?  We live 8 minutes from the hospital.  How different our lives could be right now, if things hadn’t lined up just so.





Part 1: Porter’s Journey

Porter’s story is going to be a bit more lengthy than Winter’s.  I’m going to split it up into 3 parts so bear with me.

After determining that Porter hadn’t grown in more than two weeks, the decision was made to have a c-section to get him out into the world to get him the help he needed.  He was born quickly and came out with a cry.  I hadn’t expected to hear him cry, but was so glad he did.  He needed CPAP for a short while, then a nasal cannula.  He had a line inserted into his belly to give him nutrients because he was too tiny to try to eat.  Like his sister, he was jaundice and couldn’t maintain his temperature.  He also had borderline low blood sugars, an issue that remains today.  Porter had far more ups and downs than we expected.  We would take two steps forward, and one step back.

Porters Journey 1

The first real scare was when they thought he might have NEC (necrotizing enterocolitis).  He had some bloody, mucousy stools.  They stopped feeding him, hooked him up to an IV, began a 7-10 day course of two antibiotics, took blood for tests and a culture and spinal fluid was taken for a culture.  I was called around 2am to be told all of this.  It was the only time we received a middle-of-the-night call from a NICU doctor.  I googled NEC which was a terrible decision.  I went to the hospital to meet with the doctors and nurses and to sit by Porter’s bedside.  It was incredibly scary and I lost my shit.  Thankfully, some of our favorite staff were there with me and we hugged and cried and they forced me to drink water.  He spent 4 days without food, his only nutrients were through an IV.

Porter was anemic from birth.  At one point his platelet count was pretty low, 45k, when it should be between 150k-450k.  This freaked us out as Kyle had a blood disorder when he was a child. Porter had a very pale appearance most of the time.  His blood work showed that his body was working hard to replace the blood cells that die off after birth, but it wasn’t working quickly enough.  We decided to give him a transfusion.  When a transfusion is done, it stops the body’s natural process of rebuilding cells, so we waited as long as we could before doing the transfusion.  Luckily, it helped.

Porters Journey2

His alkaline phosphatase was elevated, which meant that his bones were in danger of being fractured or broken easily.  The hospital had to take precautions so that everyone knew to ‘handle him with care’.

His blood sugars were low.  We tried to control them with food, that didn’t work.  We tried feeding every 2 hours, we tried continuous feeding, we tried fortifying his food to have extra calories but nothing worked.  We had to start him on a medicine called diazoxide.  It helped to maintain his sugar levels, but made him retain fluid.  He started to sound congested because there was so much fluid built up in his face and nasal cavity.  He started to not be able to eat the volume he was previously eating.  He was so swollen.  Eventually he was started on a diuretic to reduce the fluid retention, but we were never able to fully get rid of the congested sounds.  He really struggled with his bottle feeding once he started the medicine.  The inflammation and fluid retention in his nasal cavity was so bad that we removed the NG tube since it was just taking up more room.  He was able to take ‘enough’ food by mouth though we wish he could’ve been drinking more.  He was diagnosed with congenital hyperinsulinism, basically his body produces too much insulin and in turn his blood sugars are too low.  Our hospital isn’t very familiar with this particular issue so things were probably not handled the way they should have been.  This is Porter’s biggest issue today.  He is still on the medicine and could be for some time.  It’s hard to tell.  We expect he will ‘outgrow’ the issue but there are no guarantees.

As you can see, Porter isn't too thrilled that his face became extremely swollen from his sugar meds

As you can see, Porter isn’t too thrilled that his face became extremely swollen from his sugar meds

Porter developed hernias from his belly down into his scrotum that had to be surgically repaired.  This was the last step before he could come home.  The surgery was performed on May 12th.  Porter was discharged two days later.

Porters Journey3

We had hoped this would be the last of our NICU days.  We were wrong.

To be continued…


Winter’s Journey

It’s been far too long since I’ve blogged.  I’m settling in to life as a twin mom, I think.  I hope.  It’s like joining fight club only cuter and more badass…obvi.  I’d like to share our NICU journeys with you all.  I decided to start with Winter because her story is short and sweet-ish.

By all accounts, I thought that Winter (baby B) would’ve been the one to have issues.  Very early on, she started measuring behind her brother.  In fact, at one point the RE’s office told me to ‘hope for the best but prepare for the worst’.  Later on we discovered her umbilical cord inserted into the side of her placenta instead of the center which can cause growth restriction or a whole host of other issues.  How wrong I was.  The morning I found out I’d be delivering my babies at 33 weeks 0 days, I had a sinking feeling of guilt.  Winter was doing just fine in the womb, despite the ultrasound techs concern that she could have coarctation of the aorta.  But we couldn’t very well leave her behind, so she came along for the ride.

Her delivery was tough.  She was stuck up near my rib cage.  She needed to be pushed from the outside and pulled from the inside.  The doctors had to be careful not to tug on her umbilical cord due to her issue with how it attached to the placenta.  She was bruised over her feet, legs and groin area from all the man-handling.  She was quiet.  There was no cry.  I didn’t know it at the time and didn’t find out until she was sent home and I read over her discharge summary but she needed to be resuscitated.  There was no cry because there was no breathing.  I’ve never talked about that with anyone before.  She was brought over to me for a quick picture and I asked if she had hair…  It was the first time I saw her and all I said was, “Does she have hair?”  In my defense, multiple ultrasound techs had made mention to her having a full head of hair during scans.  She was whisked up to the NICU.  They hooked her up to CPAP for extra oxygen flow, put her under the ultraviolet lights for jaundice and a heat lamp to keep her warm.  She wore an eye mask to protect her eyes.  She was on an IV for nutrients and any medications she might need.  She hated IV’s.  Her body would reject them quicky and they had to be placed over and over.  She quickly came off of CPAP and just needed a tiny nasal cannula to give just a bit of extra oxygen flow for about three days.  She was given an NG tube (nose tube) to receive nutrients through.  Her main issue was learning to suck, swallow and breathe in the right order.  This remained her biggest struggle throughout her stay.  At one point, this were going really well.  She was moved to a nice, quiet, lower traffic corner of the NICU.  I was pretty sure she’d be coming home soon.

Winters Journey 1

The funny thing (not at all funny really) about the NICU is when they tell you it’s a roller coaster ride, you get it but you don’t actually get it.  Until the coaster reaches the crest and all of the sudden you’re whipped back down to the bottom.  The low point of Winter’s NICU stay came after her brother was put on NEC watch.  Necrotizing Enterocolitis is a very dangerous stomach thing.  Do NOT google it unless you want to hear terrible things, including a 25%+ mortality rate.  A nurse and nurse practitioner, who were both not very familiar with Winter, decided her belly looked distended. They measure the babies bellies in the NICU and hers was measuring a little bigger than the previous day.  She showed no other symptoms of NEC but because of Porter’s possible NEC issues, they assumed Winter needed to be treated the same way.  She was brought back into the busy part of the NICU, undressed, put under a heat lamp, hooked up to an IV and given antibiotics and made NPO for 24 hours (not fed).  She was PISSED.  And I was heart broken.  The next day when blood work came back normal and she didn’t show any other symptoms, they decided to start feeding her again.  I more think they were tired of hearing her scream because this little lady gets hangry.  She worked on her bottle feeding.  We removed her NG tube on Easter for pictures and were hopeful it would stay out, but it didn’t.  She needed another day or so of practice until she got the hang of it.  She was moved, along with her brother, to a private section of the NICU.  A few days later, on April 12th, she was discharged one day shy of one month old.

Winters Journey 2

Winters Journey 3

Winters Journey 4

As far as NICU stays go, hers was really pretty calm.  I freaked out a bit with the NEC scare, mostly because her being healthy and such a rockstar was what kept me going through the struggles we were facing with Porter.  Sometimes I think I forget she was just a 4lb preemie.

Winter's Journey 4301