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…

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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

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Superstitions: Friday the 13th and Lucky Number 33

I don’t consider myself to be a superstitious person…until I realize I am.  On February 13th, a Friday, I was released from the hospital after one night.  I was admitted because Baby A was small and had some flow issues from his umbilical cord back to his placenta.  After overnight monitoring, they decided I could go home and just report to the Maternal Fetal Medicine office twice a week for ultrasounds and non-stress tests.  As we left the hospital I had wanted to say, “Maybe Friday the 13th isn’t all that bad after all!” but we were driving home and I figured it would be best to wait until we arrived home safely, just in case.  A few short days later I was admitted to the hospital again because the flow issues continued and Baby A hadn’t really grown.  This time I was there for the long haul.  I could write an entire post on how miserable I was living in the hospital, but I will spare you.  My husband started bringing in the crock pot and cooking homemade meals for me once I was sick of the hospital food.  I was scheduled to have an ultrasound with growth scan on Friday, March 13th.  That also happened to be the day that we reached 33 weeks.  I’ve always considered 33 to be my lucky number, and I have no idea why.  My ultrasound showed the same flow issues, and the growth measurements showed no change over the last two weeks in Baby A’s size.  They estimated him to be about 2lbs 12oz, or the size of a typical 29 weeker.  We had also seen, in both babies, the potential that they could have coarctation of their aortas that could require heart surgery.  The doctor told me not to eat or drink anything and said he was going to talk to the team and he would get back to me.  He returned with the news that we would be having a scheduled c-section that day around 3pm.  An hour later, there was an emergency and we were told our c-section was pushed back and it would be sometime that evening.

I was running on adrenalin.  I was excited but incredibly nervous as well.  I knew that delivering the babies at 33 weeks meant they’d be going up to the NICU, likely until they reached 40 weeks.  The OB for my office that day was a doctor I had never met before, I wish my doctor from MFM could’ve delivered me.  I was taken to the OR, Kyle was left in the hallway while they inserted the spinal to numb me.  I was shaking uncontrollably.  One of the anesthesiologists was super great with me and basically held me while the whole thing was happening.  After it was in, I was laid down and exposed and Kyle was able to come in.  I decided I was going to tell my toes to move, so I did, but they didn’t move (obviously).  I had a small panic attack.  I felt like I was in some horror movie where I had been put in a bathtub and given a drug that paralyzed me and could just see the running water coming up to my mouth and nose and I couldn’t get away from it.  That’s a tad dramatic, but I didn’t like it.

When they began to perform the c-section, I had the weirdest sensations in my body.  I wasn’t in any pain but could feel all kinds of pulling and pushing.  At 4:58pm, Porter was brought into this world weighing in at 2lbs 12oz, just as predicted.  He was whisked into a room off of the OR to be assessed by the NICU team.  Baby B was stuck way up in my abdomen so they had to push her down, again the weirdest feeling ever.  At 4:59 they pulled Winter out of my belly by her leg, she was 4lbs 4oz.  She had some immediate bruising from being pushed  and pulled out.  She was also whisked into the other room and Kyle went with them.  I thought that would be it, that I wouldn’t get to see my babies.  Kyle came back with pictures and one of the NICU Nurse Practitioners surprised us and said that I should get to see the babies.  For a few precious seconds they held Porter next to me so I could see him and Kyle snapped a few pictures.  Then they brought Winter over and showed me her head full of dark hair.  And then they were gone.

Birth Story

Porter (left), Winter (right)

 

I was left behind while they closed me up, which seemed to take forever and I was wheeled into recovery.  At some point that evening, they wheeled my hospital bed into the NICU so I could see each of the babies.  I don’t really remember much, luckily Kyle took a ton of pictures to show me later.

Long story short, I never considered myself to be superstitious, but it turns out I am.  Friday the 13th isn’t always bad, for me it’s a lucky day.  And my lucky number finally made some sense.  I had made it to 33 weeks pregnant exactly when my babies decided they had to make their grand entrances into this world.  Within a matter of a minute, our lives have been forever changed.

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