The Hospital Again

Once again, for those of you that I know in real life and on facebook, you know about this already.  For those of you that read my blog but don't know me in real life, this is the first you have heard of all of this.

You may have been wondering where I have been for the last week.  Maybe you thought I was just busy with a newborn and a 4 year old.  The answer is no.  We have been in the hospital with Elliott for the last week.

I am trying to write this as quickly as possible in between feedings, so I apologize if it is jumpy or not coherent.

Last Monday, January 2nd, when he was 17 days old Elliott missed a feeding at about 2:30 in the afternoon.  He was just too, too sleepy and I could not wake him up.  It had been about 10 days since he had really missed a feeding.  I was concerned about it.  I pumped, we fed him what I pumped and then he nursed "ok" around 5:00.  He was also extra fussy that afternoon.  At 8:00 I woke him up again and nursed him again.  About 10 minutes in he turned really pale, almost white, and the area around his mouth and across the bridge of his nose turned blue.  Then his fingernails and toenails turned dark purple.  We freaked out.  Then I pulled him off and his color returned to normal within a couple of minutes.  We debated for about 2 minutes about what to do- wait and see (we had a doctor appointment the next day and had already talked to the after hours nurse at the doctor's office because of his sleepiness and extra fussiness) or go to the ER.  We ultimately decided that a 2 week old turning blue was in no way normal and we needed to go to the ER. 

In hindsight I am sick to my stomach that we even debated for 2 minutes because Elliott would have for sure died that night if we had not brought him in.

We loaded everyone in the car and I called Megan on the way.  She came and met us and took Spencer home with her for a sleepover.  When we got to the ER there was a long line to check in.  Michael cut in front of everyone and demanded that we be seen immediately because we had a newborn who turned blue.  They took us back right away, but by then Elliott looked totally normal.  They checked him out and said that sometimes babies with reflux can turn bluish while they are nursing.  They were going to admit us to just monitor him overnight and we would probably go home by the next day.

They took us up to a room in the oncology area, because they were very empty that night.  They hooked him up to a bunch of monitors, Michael and I sort of grumbled about it being annoying that we had to stay overnight, I nursed Elliott again and we went to bed around 1:00.  At 3:00 am 6 nurses came running into our room, scooped Elliott up and started pounding on his chest.  They pulled him out of the bassinet, put him on the bed and started forcing oxygen from a high flow mask into him.  He had stopped breathing and his heart nearly stopped.  The nurses never left his side because this happened 6 times over the next hour.  They took his temperature when they first came in the room and it was normal.  Within an hour it had spiked to 103.

During that time (from 3:00-5:00) they put him on oxygen, started an IV and took a chest x-ray.  At 5:00 they moved us to the pediatric intensive care unit.  It was obvious to all that this was way more than acid reflux.

Once we were in the PICU they did a spinal tap, took a nasal swab, inserted a catheter to take a urine sample and drew a bunch of blood.  It was awful to watch all of that, but Elliott was so sick he barely budged for any of it.

Once they were done taking all of the samples, they started him on two different antibiotics and an antiviral.  They didn't know what was wrong with him so they had to cover everything.  We were told that it would be 24 hours before the first results were back and 72 hours before everything was back.

Later that afternoon they did an EEG to check for seizure activity and an ultrasound of his brain to check for bleeding, swelling and problems with his ventricles.  The ultrasound came back normal but the EEG showed major seizure activity on both sides of the brain.  Because of that the neurologist ordered an MRI for the next day and started him on anti-seizure medication.

That first day (Tuesday) was the worst day of my entire life.  We spent 24 hours thinking that Elliott was going to die and if he didn't he would be seriously disabled.  The only reason I can talk about it now, 7 days later, is because we know so much more at this point.  I was actually, literally, unable to speak for 3 days.  I pretty much cried continuously until Wednesday night.

On Wednesday morning the first of the cultures came back.  The spinal tap was clear.  He did not have meningitis.  The blood cultures showed the same type of bacteria in his urine and his blood.  He had a urinary tract infection that spread to his blood, so he had sepsis.  Sepsis is very serious in a newborn.  It is the leading cause of death in a premature baby after the first week of life.  We were obviously devastated by this news, but at least it was information.

At about 9:30 on Wednesday Elliott went in for the MRI.  He had to be sedated because he could not move at all.  I thought that it would be mild sedation, but he actually was put under general anesthesia and did not wake up until 10:00 that night.  He was on an IV getting fluids the whole time but it was horrible not being able to nurse him or feed him in any way during that whole time.  The results of the MRI were ready by the afternoon.  Everything was normal.  No structural problems.

That day my mom asked if we wanted to have Elliott blessed by a priest.  We spoke to the chaplain and he said that the priest was actually in the hospital.  I had asked the chaplain if it was possible for the priest to baptise Elliott and he didn't think he would.  The priest was there within 20 minutes and we asked if he would do a blessing and he said of course and asked if we wanted him baptised.  So, on Wednesday afternoon Elliott was baptised in the hospital.  We are going to have a real ceremony later when the godparents are present and we can do the gown and the candle and everything.

On Thursday the cultures came back showing that the bacteria in his urinary tract and blood was E.Coli.  They also did an ultrasound of his urinary tract to check for obstructions and structural anomalies.  They found none.

Because there are no structural problems we are going to have a test that will show if Elliott is having urinary reflux.  Sometimes babies and kids will have urine back up from their bladder back into the kidneys and that can cause a UTI.  It is very, very important for us to find out why Elliott got the UTI because we have to make sure he doesn't get another one.  A UTI in a newborn is very rare.

Since Thursday everything has been very stable.  Elliott still wasn't nursing well, but he has been since Friday.  Since Saturday he has been cluster nursing around the clock because 1) I think he is feeling better and 2) he is making up for all the time he didn't eat.  He still has the IV but he hasn't had any fluids since Thursday.  It is only being used for meds.

One of the theories that the neurologist threw out early in the week before any test results were back was that Elliott might have a herpes infection.  I do not have herpes so I was confused as to how this might be.  They explained that herpes II is the STD, but herpes I is the type that caused cold sores and 80% of the adult population is infected with it.  It can be passed to a newborn through casual contact and is just as devastating as the STD type.  It has an 85% mortality rate and the babies that survive have major problems.  I spent 3 days FREAKING out about that possibility.  The neurologist thought it might be a possibility because of the seizures.  Elliott had no other symptoms of it.  We didn't find out for sure until Friday that there is no herpes infection, and actually, no viral infection at all.  On Friday they removed him from the antiviral medication.  They also removed him from one of the antibiotics because the final blood culture showed he only needed one.

The plan from here is that Elliott has to have 10 days of antibiotics.  That puts us here until Thursday the 12th.  He started with an IV in his arm.  That one was starting to leak a little by Friday, so they put one in his ankle.  Tomorrow, Monday, they are placing a PICC line, because the antibiotics are very harsh on his veins.  He has 2 more doses of antibiotics before tomorrow.  We are praying his IV lasts until then.  They have to wait until Monday for the PICC line because he can't have any bacteria in his blood when they do it. 

He is scheduled to have the urinary reflux test on Tuesday because he can't have any bacteria in his urinary tract when they do it.  If he does have urinary reflux he needs to take a small dose of antibiotics everyday to prevent another UTI.  Most kids outgrow the condition as they get bigger.  If they don't it is a simple surgery once they are older.

Elliott will be having a repeat EEG on Wendesday, on day 9 of the antibiotics, to check for continued seizure activity.  We are hoping and praying the seizures were caused by the sepsis and will be gone now that the sepsis is cleared up.  If they are not we will have to investigate that Elliott actually has a seizure disorder unrelated to the illness.  We'll deal with that if it happens.

I am writing all of this on the computer in the quiet room in the PICU.  I loaded the pictures to blogger from my phone.  For some reason the pictures come out horribly when I use that app to load them.  They are all grainy and I can't center them.  Sorry.  We'll all deal.

I have no idea if I already said these things but I wanted to add a few more details, just so I know I covered everything.  Elliott has been off the oxygen since Tuesday afternoon.  He has had only 1 little episode of apnea (on Thursday night) and he recovered on his own.  Other than that, his breathing and heart rate have been great all week.  The pediatrician assures us that the sepsis does not put him at greater risk for developmental delays.  If he had had meningitis it would be more of a concern.  The antibiotics do not put him at risk for hearing loss.

Elliott had not passed his hearing screening in his left ear in the hospital when he was born.  They rescreened him yesterday and he passed. 

Also, they tested his bilirubin level when we first came in and it was elevated again, most likely due to the sepsis.  They started him on the bili light again and as of Thursday his levels were finally within normal limits.

Michael just called and Elliott is starting to stir so I have to go feed him.  Sorry this was all over the place.  It's been a hell of a week.

These are the pictures I wanted to share.

 Elliott at 4 am Tuesday morning before we were moved to the PICU.  I see now just how sick he was.



Tuesday morning in the PICU


Tuesday afternoon

Wednesday- being baptised

Thursday- finally awake after the anesthesia the previous day

Friday afternoon after he finally started nursing again

Friday evening, I think

Saturday- after a bath while his hearing was being rescreened

Saturday afternoon- sleeping peacefully.  I finally relented and let Elliott have a pacifier because the nurses told me that babies in the PICU need something to help soothe themselves.  I'm already trying to cut back on it.


Sunday- with daddy

I want to mention really quickly that Michael has been with me and Elliott at the hospital this entire time.  He is my rock.  I could not handle this without him.  I would have died on about day 2 without him.  He is the best husband and the best father in the world.  If I am strong it is only because he is my partner through all of this.