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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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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The Heart is the Matter

A few days ago, while undergoing an ultrasound to check on Baby A’s umbilical cord flow, the ultrasound tech said, “I’ll be right back.”  She left the room and I knew this wasn’t normal.  She returned with the Perinatologist and showed her my ultrasound.  They were talking about our son’s heart.  I heard things like ‘I see dilation’ and ‘the flow should only be going one direction’ and ‘narrowing’ among other things.  The doctor calmly told me that she wanted to contact one of two Pediatric Cardiologists who works with our hospital because she isn’t an expert on the hearts of babies.

I immediately went into a panic.  What did any of this mean?  What is wrong with my baby?  We waited and waited and heard nothing.  The next morning I was taken back to the ultrasound room for an echo on the baby and told that they would be making a disc for the cardiologist to review.  We waited hours and heard nothing.  In the evening, I asked my nurse if she had heard anything.  She checked the order and told me that it likely wouldn’t be looked at until the following day.  Two days had passed before we were given the chance to see the cardiologist.  He told us the disc was empty and I’d need another ultrasound.  So back down I went to the ultrasound room and had another ultrasound performed.  Hours later, the doctor finally came in to talk to us.  It was a lot of big words and fancy mumbo jumbo that really went over our heads.

We will not know for sure until our children are born, but the ultrasound showed a narrowing of the aorta (coarctation of the aorta is the official name).  It isn’t affecting the baby much while in the womb so this issue by itself would not require us to be delivered early, but obviously Baby A has other issues as well.  Once the babies are born, they would do an echo on Baby A to get a better look to see if the issue needs intervention.  The doctor explained, after verifying who our insurance company is, that he would recommend us to go to CHOP or Hershey Medical after our baby is born, assuming he needs intervention.  It could mean heart surgery.  HEART SURGERY.  on a baby.  maybe even on a preemie.

He assured us that this is a fairly common problem, and the surgery is very low risk.  But heart surgery is still heart surgery, right?  It sounds pretty scary to me.  Basically, they’d go in and remove the narrow part of his aorta and either sew the two ends back up, or add a patch and sew the two ends to the patch.

This was right about the time I started wondering what we had done to deserve this.  Could I have caused this?  Is it karma for something I’ve said or done in the past?  Hearing things like this about your child, it shakes you.  It makes you wonder why in the hell some crack whores are able to get pregnant and birth healthy babies but the person who has wanted it for as long as they can remember, can’t.

Someone said to me after I discovered I needed IVF that things like this happen to people like me because I want it so badly; that if something like this happened to them, they’d give up and just go without kids.  At the time this response really got under my skin.  I’m realizing how true it really is though.  It’s unfair, but true.  Because I so desperately want a family, I will have to fight more obstacles.  They say nothing worth having ever comes easy, right?  So we will fight, Baby A will fight.  When he’s born, maybe there will be nothing wrong, maybe he won’t need surgery.  But if he does, he will fight through that too and we will fight along with him.

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