The Broken Road: June 2012

I can't believe that Levi and Addy are already a month old!

Levi

4 days ago he weighed 7lb 12oz.
He is still on the formula per doctor recommendation for a milk allergy and seems to eat constantly. He only takes an 1-2 oz each time and eats like every hour during the day! It's exhausting! I think his reflux makes it hard for him to eat more than that at once.
The reflux is definitely making good sound sleep hard to come by... He gets a couple good naps a day and sleeps decently about half the night. The rest of the day and night is spent spitting up all over and crying... It's so sad and hard to watch! I feel so bad for them!
He is so strong and has been lifting his head up since he was born. But the last few days he seems to be getting more steady!
He definitely responds to our voices and follows us with his eyes. When we put him on the play mat this weekend he seem interested in the animals hanging in front of his face.
Levi would be happiest being held chest to chest all day long! But he also seems to enjoy being outside, his sponge bath (no real bath yet because of his cord staying on for three weeks! and a circumcision last week).
He makes so many funny faces and kind of acts like a grumpy old man!

Addy

4 days ago she weighed 7lb 10oz- fully dressed, so probably a little less.
She is taking 3-4 oz of breast milk every two to three hours. She also likes to graze throughout certain parts of the day, but overall does a pretty good job handling a bigger bottle all at once.
Addy was a good little sleeper but then reflux hit last week, and now she pretty much has the same issues as Levi. Her Zantac is starting to kick in, and she seems to feel a little better the last couple of days, but she still definitely has her moments. Poor babies!
Addy loves to be toted around while we go about our regular activities. She has no problem falling asleep while I do table time with Max, do dishes or walk around the house with her in one arm.
She has the most pathetic and adorable cry I've ever heard. We don't hear a real cry from her a whole lot, but when she busts out the real thing, it'll break your heart! Add in her bottom lip and it's almost too much to take!

I started writing this a couple weeks ago and am just getting around to finishing it!

Right now Levi is curled up on my chest- legs under his belly, face resting on his hands. This is how he loves to be held. Looking at him, you would never know that three days ago he was diagnosed with meningitis. Three days ago, we were forced back down that scary and terrifying road that led straight a hospital room three doors down from room we left Ellie's body in just over 19 months ago...

On Monday afternoon, we were on our way home from the cemetery and Max was in the back of the van with Levi and Addy. Dave heard Levi spit up a little so I turned around to wipe his face off and check on him. Levi had started turning bright red, his eyes were bugging out, his tongue hanging out of his mouth and his back and head were arched way back. He would do this for about 15 seconds then his body would relax and he would scream before going back into it. I gave him a few seconds to come out of it, but he didn't. I ripped him out of his car seat and started pounding on his back and trying to comfort him. It looked like he was choking, but he was screaming so he was obviously moving air... We were now almost home and Levi was still struggling. We made the decision to call 911.

When we got home, I ran inside to get the bulb syringe, and was able to get one glob of thick phlegm but it didn't make a difference. It took the ambulance almost 15 min to get to our house and the whole time, Levi kept alternating between hysterically screaming and this arching, choking state. His eyes scared me- he was panicked. When the paramedics finally got there and hooked him up to the monitor, we saw that his oxygen levels kept dropping dangerously low and his heart rate down to the 20s and 30s. In order to get them back up, we would have to stimulate him. This of course, earned us a lights and sirens trip down to the Children's Hospital. On the way down to the hospital, we kept trying to suction out his mouth and about half way there we got several globs of thick phlegm out. At about that time, Levi started to relax, the life came back to his eyes and his vitals started to stabilize.

The code team was waiting for us when we arrived at the hospital, and it only took a few minutes for them to see that Levi had corrected whatever was wrong. After talking to the ER doctor, they decided that because of what happened to Ellie, that Levi should receive a "rule out sepsis" workup. When infants under two months show up at the hospital with strange symptoms, they often suspect an infection of sorts. Because these babies have immature immune systems, infections can take over quickly and symptoms are often not typical. So Levi's blood and urine were checked, and he had to have a lumbar puncture to check for infection.

While in the ER waiting for the doctor to come up with a plan, Levi had a bottle and while he was eating, his oxygen levels dropped... This meant no more eating until we had things figured out. Our doctor came in and said that a few people who had worked with Ellie had seen our name on the admit board had called with their concern for us, and recommended treatment of Levi. Sad that our reputation proceeded us, but we were grateful for the concern. In the end, it was decided that because of what happened to Ellie and the unknown nature of Levi's incident, that we would spend the night in the PICU.

We arrived in our PICU room a couple hours later, and just after settling in, the lab called to say that Levi's spinal fluid had grown bacteria- meaning he had meningitis. This coupled with some irregular breathing Levi was doing caused the doctor to become very concerned and we started having horrible conversations about things like intubation. Dave and I were beyond scared.

Everything seemed to be too familiar. We'd been here before. The conversations were a little too similar and the words the same. The looks on their faces said that they were scared too. We were reassured over and over again that what was happening to Levi was NOT what happened to Ellie. But I could not shake the intense feeling of Deja Vu.
My chest felt heavy, my hands were shaky and everything seemed to be spiraling out of control very fast. I couldn't believe that almost 19 months after losing Ellie, we were here again. In the same hospital, just doors away from where everything fell apart, just waiting for it all to happen again. I thought we were getting ready to bury another child...

After some discussion among physicians, it was then decided that is in her best interest for Addy to be brought into the hospital and given the same "rule out sepsis" workup that Levi was because they suspected that Levi had Listeria Meningitis, which meant that he would have gotten it in-utero, making Addy just as likely to have it...

So my mom brought Addy- our perfectly healthy looking Addy, down to the hospital and we went through the whole blood work, urine culture, lumbar puncture and IV placement with her, before being admitted to the hospital for a minimum of 48 hours of observation, IV antibiotics and awaiting lab results. They weren't able to put Addy in a PICU room on the 5th floor, so I requested she go onto the 7th floor, where all the nurses I used to work with are. By the time Addy was all admitted and the doctor saw her, it was about 2am. Our moms stayed with Addy, while Dave and I stayed with Levi in the ICU. It was a long night of worrying about two babies, especially Levi, since they had us very convinced that he was very ill.

Thankfully, it was decided pretty soon in the morning that Levi could eat again because he did great overnight. When the intensivist came in to see us in the morning, she was very pleased with how Levi was doing and then noticed some "interesting" lab results.... Levi's spinal fluid had shown no more bacterial growth than what was initially noticed. She was a little confused and after consulting with an infectious disease doctor, it was decided that Levi did NOT and NEVER did have meningitis. That instead, his spinal fluid had been contaminated either during the extraction process or in the lab.

I don't think I can ever describe the amount of relief we felt at the moment. When you have a child in the hospital and who is facing a potentially fatal diagnosis, you immediately start hoping and praying that some how all of it is just a bad dream. You want more than anything, for them to come in and shout, "JUST KIDDING!" and send you home with your perfectly healthy child.
When we were in the hospital with Ellie, I kept waiting for some movie director to come out from around the corner and yell "CUT!" It all seemed to fake and like a dream you are fighting to wake up from... Yes, we are angry that we were put through hell thinking that Levi had meningitis and that we could lose him too. But to actually get that moment that we (and so many other parents) have prayed for before brings so much relief and gratitude that you almost forget everything you've just been through...

So, Levi was taken off his "big gun" antibiotics immediately and transferred upstairs to the same floor as Addy. It was decided that they would watch the spinal fluid culture for one more day, just to be sure and keep both kids on their antibiotics for another 24 hours. Plus, Levi did have some sort of episode that prompted us to call the ambulance and we needed to get answers for that before we took him home.
More discussions, and more specialists finally lead us to decide that Levi had a laryngospasm in the car caused by reflux and this triggered some apnea episodes and a vagal response. Basically, he had a really bad episode of reflux, his body reacted to protect his airway which caused him to hold his breath and look like he was choking. His body would then relax long enough for him to cry and scream and arch his body, but then it would protect itself again. I guess these spasms are incredibly painful and cause a lot of panic because the person feels like they are choking even though they aren't.
The doctors decided to do a sleep study on Levi before we left, to check for apnea. The next morning, results showed that he had barely failed and he earned himself an apnea monitor for home. Small beans compared to what we thought we were facing with one - and possibly two- meningitis diagnosis. After learning how to use the monitor, both babies were discharged and we finally headed home!

I can say, that without a doubt, this is one of the most stressful things I have ever been through. It was like that stupid groundhogs day movie where he keeps waking up in the same day. I could have sworn that I had somehow seperated from reality and was stuck in this horrible nightmare. My mind could in no way comprehend that we could be losing another child- and possibly two. We put our ten day olds through hell, scared our friends and family, lost a huge chunk of Max's trust and were forced to relive memories that I had tucked away, far from my ability to recall them. Our bonding with the babies was greatly disrupted and there is no doubt that I have taken several large steps backwards in the grief process. We've been traumatized.

The worst kind of deja vu.

And then it continued...

The day after we got back from the hospital, our beloved pediatrician called us to say he'd received a call from the hospital lab. Addy's spinal fluid was now growing bacteria also and the hospital had wanted us to bring Addy back down for more tests and treatment. Our ped. said it was a pretty obvious contamination and that he would not ask us to go through all of that again, nor would he put Addy through that. She should have never been in the hospital in the first place. He did ask to see Addy just to make sure she looked fine- which she did.
Thankfully our pediatrician was able to advocate for us and spared me the chore of having to argue with the hospital about bringing our perfectly healthy baby into them again for more unnecessary treatment...

But then...
Last week, Dave noticed that Levi's poop was bloody when he changed him in the morning... I fought and fought with the clinic to be seen there, but because of Levi's age, they wouldn't. So we went to the ER again. After several hours there- with the same nurse!- it was decided that Levi has colitis due to a likely cows milk protein allergy. However, they can't really prove this. The only way would be for me to eliminate all major allergens from my diet and slowly add things back in until we know the culprit. However, the GI specialist strongly recommended not doing this since Addy is still getting breast milk and eliminating items changes the value of the milk. So for now, Levi is on a gentle formula and the blood has cleared up, but he is now constipated and so uncomfortable... poor kid can't win...

We are exhausted... I feel like we've been running a marathon and there is no end in sight. My incision is still really sore, I'm thinking that I should be a lot further along in the healing process but there hasn't exactly been a lot of time to heal... I hope that I can get back to feeling normal soon!

Max doesn't really seem to care whether the babies are here or not, but we have been dealing with some behavior problems and attention seeking issues. We are trying to keep him distracted and trying to make sure that he gets alone time with each of us. He keeps asking where "levi and addison live?" I think he's waiting for us to bring them back to their home! Our extra time in the hospital has really made it harder on Max, but hopefully we can get back into a regular schedule soon and I think that will make everyone happier...

We just need to stay out of the damn hospital!

Here are some pics from the last few weeks...