November 6, 2010

The ride continues...

J and I used to have a great travel job, where we'd visit exotic destinations.  Often, the schedule was posted months in advance, but my boss always told us not to get too excited, since plans could change and sometime the government would postpone trips for various reasons.  "You're not on a trip until you are on the plane, the door is closed, and it has pulled away from the gateway." he said.  I should have kept those words of wisdom in mind this week.  Our new motto should be: "You're not out of the NICU until the baby is strapped in the car seat, you sign the paperwork, and walk out those doors with baby in hand."

Why are things so busy around here?
Last weekend, J and I talked to Dr. B about Andrew's discharge.  All was going great, he was back to eating his full bottles and we could feel the end of our NICU journey was approaching.  Dr. B agreed, and we began planning.  Thursday was the day we were shooting for.  We ran around town purchasing last minute items, finished up washing all Andrew's things, getting the house cleaned, and putting together all his various toys and gadgets that we would use when he got home.

Things were equally busy in the NICU.  Andrew had his newborn hearing screen (passed), we met with several specialists for consultations, including the surgeon who will do his hernia surgery in a few months (at about 10 pounds), a developmental specialist who will follow him upon discharge, and the eye doctors (Andrew's ROP is gone, and he doesn't need to have a followup until May!)  They changed his feeding in preparation for going home - he's been on fortified breast milk his whole life for extra calories, and now he'll be taking regular breast milk, and supplementing with two bottles of formula a day.  

Hanging with Dad on Tuesday morning

J and I also had to attend training for the monitor and oxygen that he will go home on for at least awhile.  We are ok with this, and think it will give us some peace of mind for the first weeks he's home.  The medical company that provides the equipment came to our house on Tuesday afternoon and delivered a huge oxygen tank, which is now taking up space in our dining room.  We also have smaller, portable tanks that we'll use when he goes to the doctors or out of the house.
During these hectic few days, we noticed a change in Andrew.  Starting on Monday he just seemed a little off.  He was much calmer than usual, wasn't crying as much (especially around meal time when he usually is ready to eat) and he was eating slower than usual.  Actually, Monday night he only took about 1/2 his bottle for two feeds in a row.  Tuesday, I went in and noticed the same thing.  J and I both commented to our nurses on Monday and Tuesday that he just didn't seem himself.  Everyone tried to chalk it up to something benign - we changed his formula, he's eating more volume and so he isn't so hungry so he's calmer, he had an eye exam and those can make a baby off for the day.  I even got "often when babies are ready to go home, parents panic and so they begin to imagine the baby is sick so they can stay longer."  Yeah right - after 130 days I'm ready not to spend my entire life at the NICU!!!

Luckily, the doctor took us seriously.  When we spoke with him that day, he ordered some blood work.  When Andrew spit up some of his bottle that afternoon, he ordered an abdomen xray.  Sure enough, some numbers in his bloodwork were slightly elevated (indicator of infection) and his xray showed dilation of his intestines - quite exaggerated, actually.  The poor boy was fighting something off, and especially because of the xray, they took it quite seriously.

J and I walked in that night, oblivious to all that had happened in the preceding hours.  We were carrying Andrew's car seat and excitedly talking to some of our friends in the hall about his discharge in just a few days.  Out walks one of the nurse practitioners, and says she needs to talk to us - over there in the corner.  My heart just sunk.  It's never good when the doctors or nurse seek you out.  She gave us the bad news, including that Andrew had to be moved back to the intensive care unit, that he would be getting lots of antibiotics, and he wouldn't be able to eat until the figure out what exactly was going on or he got better.  Just when we thought the ride was over, it continues. 

Not feeling well on Tuesday night.  Back in room 202
with a big distended belly.  Yes, that's an IV in his head!

Feeling a bit better on Wednesday.  Belly getting
smaller.  Yes, now the IV is on the other side
of his head.  Poor kid!
We figure this setback will take a few weeks for him to recover.  He's responding well to the antibiotics, and his bloodwork numbers are improving, but they are taking this very seriously, for which we are grateful.  We are well aware how fortunate we are that we caught this early and it happened before he got home.  Once you are discharged from the NICU you can't return, so if something happens when he gets home, he'll be sent to the pediatric intensive care unit (PICU).  We're glad he's back in his original NICU room, where all the nurses know and love him, and the doctors know his history.  Andrew is definitely feeling better (he's feisty and vocal and more alert) and hopefully we'll be able to feed him soon (he's on TPN - basically all his nutrition and calories is through an IV).

Thursday - resting.
More permanent central PICC IV now in his arm.
Notice that they had to cut his hair a bit for the
scalp IV.  Not how I imagined his first haircut!
As for J and I....uggg.  In many ways, I feel like I did the first weeks of Andrew's life.  I'm in a bit of a daze, scared, and trying to readjust my reality.  We were so focused on having him home, that changing gears and continuing to visit the NICU has been hard this week.  Of course, we are also worried about Andrew's recovery and pray that this is really just a minor setback.  It's hard not to let your mind go down the scary/worse case scenario path in situations like this.  And, it really stinks to see your child hooked up to multiple IV lines again, and not happy.

You're not out of the NICU, until you are out of the NICU.  And we are most definitely not out of the NICU!


Kendra said...

So sorry for your setback, but glad he's getting such good care! Hang in there.

Anonymous said...

Although I know you are just exhausted by the ups and downs of this, I read this post and think of another positive truism (which I didn't learn until my kids were 8) which is: nobody knows your child like you do. So you always can trust your instincts. If you suspect something is wrong, something is!

Hugs - Dana next door :)

Courtney said...

I'm so sorry to hear this! My twins were born at the exact same gestation as yours and did 143 and 146 days each. I had hoped you'd beat us since he's done so well. People with shorter NICU stays than ours wonder how much more miserable a long stay is. I think the first few weeks and last few weeks are both very hard in different ways. You're so right that it's good y'all caught this now. It still sucks, though, huh?

Thinking of you ...


Libby said...

I know it is must be so so tough for you and John -- but hang in there, he'll be home soon! I'm just happy he's got his favorite doctors and nurses to look after him! Not to mention super-duper parents!

Kate said...

130 days. Wow.

I am so sorry about this setback. I can completely relate to what you are going through (we brought our little guy home for a day and then went back in when we were wrestling with issues). This, quite simply, sucks.

Please do your best to continue to lean on one another and not let your fear and anxiety overwhelm you.

Your blog continues to inspire me. Thank you for being so honest with your feelings. You are fighting some big demons with this situation, and are coming out on the other side so very well time and time again. Thank you for letting us know how hard this is as well as how truly awesome this process has been so far. God continues to look after Andrew and you and John.

We'll keep prayin' in Ohio!

MoDBarb said...

Setbacks are never easy, but thankfully it happened when Andrew was still in the NICU. You seem to be handling the roller coaster ride well. Hopefully he will be home soon.

Preemies mean so much to us. I want to let you know that we will be participating in the Bloggers Unite Fight for Preemies event on November 17th, Prematurity Awareness Day. I thought you might be interested in joining us. Here’s a link for more info and to sign up to help us spread the word: Nov. 17th is the day we all fight – because babies shouldn’t have to.

Anonymous said...

Hi Kristen. I've been hoping to find you &/or your husband online. This is Melissa...the mother of the O'Leary triplet boys who shared the NICU with Andrew. After all my boys were D/C'd, I wished I had stayed in touch with some of the NICU parents we were fortunate enough to meet along the way, but I guess we became so fixated on getting out of the NICU that I forgot to exchange information. I believe the last time we spoke was when we ran into one another in the parking lot of the hospital following Nolan's re-admission with a diagnosis of NEC. It comes with heavy heart that I say that our baby Nolan did not make it. After 2 long weeks of fighting in the PICU, he lost his battle & we lost our baby. I hate writing this as a post/comment, but I don't know how to get in touch with you. I suppose when I found your blog & began reading...I was drawn to this particular blog. Strangely enough, you posted this blog on the date Nolan was D/C'd from the NICU (11/6/10) & this blog was the blog where you spoke of Andrew's setback & move to 202. I recall you mentioning that Dr. B questioned whether Andrew had NEC as well, but it sounds like they were able to catch it fast (if in fact his infection was pointing towards NEC). Regardless, after reading this blog I have chicken skin. I say that because Nolan exhibited some of the same signs Andrew did - i.e. spit up which wasn't "normal" for Nolan, not taking an entire feed & refusing 1 feed all together...hence the trigger for us that brought Nolan back to the hospital 1 wk post D/C from the NICU. Unfortunatley for Nolan, he became so septic that his poor little body simply deteriorated & couldn't take it.

Kristen, I am so thankful that Andrew was still in the NICU at this point and more importantly that YOU were diligent & vocal probing the staff to dig deeper for blood tests that led to Andrew going on antiobiotics early on thanks to you.

I hope I'm not jumping to too many conclusions, but the similarities/warning signs are chilling. I would really like to talk to you not only about this, but more importantly would truly love to hear about your beautiful boy. I pray he is thriving & you & John are happy & healthy.

I can be reached via email @ or phone (703) 343-6838. Take care Kristen & pls send me regards to John. I hope to talk to you & see you soon.

Melissa O'Leary
Mother of Molly, Peter, Jack & Nolan