Monday, April 11, 2005

The NICU

It's been a day from hell.

Last night I discovered that the only thing worse than a baby who is fighting and screaming at each feeding is a baby who doesn't want to fight at all. He was so sleepy that he refused to rouse for feedings. We would try to wake him, but he didn't want to wake. If he did, he would eat and then spit it back up.

At 3am I woke up Matt because I was exhausted and Jack finally had a wet diaper. Unfortunately it looked like there was blood in the diaper, which I've now learned is colored crystals which come from very concentrated urine. Jack refused to eat at all at 3. I fell asleep on the couch, waking each hour to check on him and having some very strange dreams about a meteor shower and thinking Jack would be okay because I saw an older boy in my dream.

At 5am, he ate only 1/2 oz and there was another spot of color in his otherwise bone dry diaper.

At 6am, it seemed like every dog in the neighborhood was barking. It woke me up. I walked out in the backyard with our non-barking dog to check out the commotion. Around the corner, in our completely fenced yard, came a big black dog. I thought I was dreaming again so I came back inside and told Matt. Since I was up, I pumped, and then since I was awake and the sun was starting to rise, I called our pediatrician. I told him about our baby who basically slept through the night, the 'blood' in his diaper, his refusal to eat. Our original plan had been to get Jack another blood test at the hospital and then meet the pediatrician at his office. The new plan was for us to go immediately to the emergency room at the Children's Hospital.

The rest of the day is pretty blurry, filled with long waits and scary times. I believed that we would be going there for a day of Jack sunning himself under the billi lights, but I was wrong.

First was the IV and blood tests. The IV is because he was obviously dehydrated. Unfortunately they blew his first vein so they had to do it twice. (Bastards.) The blood test was to check out his billi (which was 22, so now over the bad 20 level) and rule out many other things.

Second was the abdominal X-rays to rule out other problems. Before the results came back, our pediatrician came in (on a Sunday, in this San Fran area Children's hospital 45 minutes away from his office, I love him) and talked to us more about jaundice and the lights and the things we were ruling out. Then the results came back and he explained that Jack had an obstruction somewhere. They could see that his stomach and intestines were filled with stool and air to an extreme level. It was the inability to poop that was causing his jaundice to keep increasing, so the yellow skin and refusal to latch were symptoms and not the real problems. That's when they asked me how long his belly had been so big and hard and I shook my head and gasped for words since I had no idea. The surgeon came in and checked him out and many ideas were discussed as to different types of obstructions, including a twist in his intestine.

Third was the contrast X-rays where they first had him drink a dye while we watched it go down through the first part of his system. Then they did a barium enema where they put it up his little rectum and watch the dye up the second half. From that they could see that he had serious problems with his colon and lower half. It don't like it when the experienced radiologist talks about how he's never seen a colon like this before, etc etc. It was too full, probably due to either a thick meconium or due to Hirschsprung's disease. (Let's call this HD to save me from typing so much.) HD is a congenital defect which in my layman's understanding means that he would not have the right cells in his colon or lower intestine to contract correctly, so he would not be able to expel poop. I have much googling I'll have to do on this subject, but I've done none so far.

So then he was admitted to the NICU, which has to be one of the most scariest places on the planet for a parent, and probably the safest place for a baby. A team surrounded him and started inserting all sorts of wires and tubes. We were lucky in that his umbilical cord hadn't healed too much so they could put tubes in there. As the team was working on him, they took me off to get me to pump and show me their system for pumping and freezing. During this, they also told us that he would most likely have surgery that day to relieve his extended belly. There was a danger of his intestines bursting and causing bad infection and other problems. I rebelled against this, asking about medical resolutions and they assured me that there weren't any. In the meantime we had to wait for the surgeon who was on another case. Under the stress, I couldn't pump much, so my tiny bottles seemed so empty and the nurse questioned whether I was really done.

The impression I had gotten of the same surgeon in the ED was that he had no bedside manner and left me rather cold and untrusting. Maybe it was when he put the q-tip up my son's bottom to check for an opening, or maybe it was his thick accent and poor explanation of possibilities. My brother (a surgeon) has always told me that if you ask for a treatment option from a surgeon, expect it to be surgery. Surgeons like to do surgery. Up in the NICU, this surgeon told the nurses and neonatologist that they would be trying some non-surgical options first. My opinion of him had immediately changed. I finally felt like things might stop spinning.

So they then worked on relieving his bowels by a catheter and basically sucking some out, and some fluid washed in every two hours. The surgeon did the first part, even returning the solution to the nurse to be warmed so that he wouldn't have to put it in cold. His methods were slow and slothlike and I appreciated his attentiveness to my baby. Jack finally started sunbathing under those billi lights. He had a little morphine because he is a little fighter, but right now he's resting comfortably without it. I've been pumping every three hours and freezing it in the NICU freezer.

The surgeon describes Jack as having a lazy colon. It is either lazy because it finds the meconium too sticky and was unable to pass it causing an obstruction and the resulting traffic jam up his intestines and into his stomach. This would be the best case scenario. This would mean that the flushing out of his system would be his general cure. They find this idea to be highly unlikely, but my hopes are deeply tied to it.

The second option is the HD (see the definition above). In the morning they will do more X-rays and sometime probably tomorrow they will do a biopsy to find out if he has the necessary cells to expel poop or not. If not, then he will be diagnosed with HD. They will then do surgery to route the healthy part of his intestine to outside his body where he will get a colostomy bag. He will have this about 9 months until they do another surgery or two to remove the diseased intestine/colon and route the healthy intestine to his little butthole. Then he should have parts that work like the rest of us.

Jack is doing fine tonight, sleeping in the NICU under the billi lights with his cool eye protectors, and not so cool tubes including the flushing of his intestines. He likes to suck on the tube in his mouth/throat as if it's a pacifier. He's off the morphine and just sleeping.

Pazel is not doing so fine. I'm exhausted and drained. It's been a long several days and today was pretty bad. I don't care how many nurses or doctors tell me that my baby will be fine, I don't like to see him go through all these tests or to hear he'll have surgery. I'm sure there are many worser things, but this is my sweet baby and it's all I can do not to grab him and go running from the hospital. They don't know what it is to look at my baby being worked on, watching him cry, and feeling my milk let down with my body's own desire to ease his pain. And they have no idea how hard it was to pull myself away from his bedside tonight just an hour and a half ago, to put his carseat and diaper bag back in the van, and drive home without him. I've learned something today and that was that the only one who can truly understand every bit of my pain is my husband because he loves Jack just as deeply and intensely as I do. For all these 12 years of marriage, today when he held me and when he also broke down, our souls were only one with one wish and one cry. I know it sounds really sappy, please forgive me, but I swear it's true.

So I'm going to get up in just a few hours to shower and have breakfast with our daughter before heading back to the hospital. Janie has been told that her new baby brother is sick and in the hospital, but will be getting better and be home soon. I've got her covered by family for as long as it takes, but there really is no substitute for us and that's hard. Already this week because of the birth and hospital stay, then the nights up with the battling baby, she's told me that she misses me and wants me. Right now she's sleeping peacefully in our bed and I'm about to climb in next to her. I miss her just as much.

I have no idea what the next few days will hold. I continue to hope that he's just got a lazy little butt with super sticky meconium and not HD. Then we can get him home sooner, with nothing else invasive and all his parts working. I hope that some day I can tease him endlessly about all the attention his little colon got and tell all his friends about the number of things that went up his rear in one day. Right now, I'll settle for a few hours of sleep and no circling thoughts. You know, the kind that keep you up and make you see black dogs.

40 Comments:

Blogger Jen P said...

Pazel, I am so sorry. So very sorry that so much is happening to your wee boy and so much is out of your control.

I cannot even begin to phathom how this feels and I am so sorrowful that this is how things are right now.

But I'm hoping and wishing that your boy is so strong and he'll kick whatever this is and he'll be a champ. He IS a champ, Pazel. And so are you and your husband.

I wish you guys the best and will be thinking of your boy endlessly.

2:07 AM  
Blogger Lala said...

I'm not even half way through and I'm crying for you. Oh dear.....

4:35 AM  
Blogger JJ said...

Pazel, you're all in my prayers. Hang in there and know we're all thinking our best thoughts for Jack.

4:36 AM  
Blogger Cricket said...

Tough day, indeed. So sorry you guys went through it. Thanks for taking the time to so thoroughly update us during such a rough time.

5:19 AM  
Anonymous amanda said...

Oh, Pazel. I'm so sorry. You, Jack, and the rest of your family will be in my thoughts.

6:02 AM  
Anonymous Soper said...

Oh, P. Thinking of you all...

6:28 AM  
Blogger Dee said...

Dear sweet Pazel, I'm sending so many good thoughts and wishes your family's way. How I hope Jack gets better soon and is home with you.

Hang in there. We're all pulling for you, Matt, Janie, and Jack.

7:56 AM  
Blogger Alecia said...

My thoughts are with you and your family - I haven't commented before, but I've been following your progress. I'm due w/an IVF baby boy in 2 1/2 weeks. I can't even begin to imagine how horrible this all is for you. Hang in there.

8:40 AM  
Blogger Beaver Girl said...

I just wanted to say I'm thinking of you and Jack and Janie.

9:10 AM  
Blogger Janet said...

Pazel,
I am so hanging on every word here, and wishing that there was something I could do.
Please know that you, hubby, Jack, and Janie are all in my thoughts.
I am holding out big hope for the lazy colon theory.
Take care,
Janet

10:17 AM  
Blogger Kristine said...

I can't even begin to imagine what you are going through. My thoughts and prayers are with you and your little boy Jack. I hope he recovers quickly and it only ends up being the "lazy colon".

10:27 AM  
Anonymous claudia said...

Oh, my goodness. Now I feel completely mortified about my advice from yesterday. My heart cramped when I read this. I'm so sorry. Words can't describe it.

I'm so hoping for the lazy colon now. I wished I could something instead of just writing this.

I am sending you the very best, best wishes and I'm thinking of all of you.

10:30 AM  
Blogger The Lioness said...

Oh Pazel, I am so sorry, poor thing! How heartbreaking for all of you! In animals often it resolves itself once the obstruction is gone, I am praying the same will happen w Jack's bowels once the nerve endings are free of pressure.

Thinking of all of you.

12:56 PM  
Blogger Stolidoli said...

Oh boy. Out of lurking to say that I'm praying for you.

12:59 PM  
Blogger The Lioness said...

What a stupid comment i just wrote, I'm sorry, I got nervous and blabbed. What I meant is, so sorry and hope it will all be alright again as soon as possible so you can all enjoy the new baby and he can enjoy the new life.

1:27 PM  
Anonymous deborah said...

Oh sweetie...what a horrible ordeal for you and your family. You are all in my thoughts.

1:57 PM  
Blogger Wavery said...

How terrifying! I'm thinking of little Jack and your family and wishing you well.

2:20 PM  
Anonymous patricia said...

Wishing for the best possible case scenario. Hang in there.

3:57 PM  
Anonymous Anonymous said...

Oh my goodness. Another lurker thinking of you and hoping for the best.

kw

4:02 PM  
Anonymous alex said...

This is realy sad..and scary. I will be saying prayers for your little one.

I am so sorry for your family. Life just should not start out this way.

4:49 PM  
Blogger Anna H. said...

I'm so sorry you're going through this Pazel. My thoughts are with you and your boy.

xxoo

4:54 PM  
Blogger getupgrrl said...

I'm holding you in my thoughts and in my heart.

5:02 PM  
Anonymous Susan said...

Pazel, I am sorry. I hope so much that your little boy will get better soon. It is so unfair.

When my husband was a baby, he had similar symptoms from a complete bowel obstruction. His mother told me it was the most difficult time of her life - being so worried about someone so small who cannot tell you what is wrong.

My heart and prayers are with you and your family.

5:17 PM  
Anonymous Anonymous said...

I'm so sorry Pazel. You're all in my thoughts and prayers.

Emily

5:33 PM  
Anonymous Lola said...

Pazel,

I'm also so sorry to hear that this is happening to your son. For what it's worth, please know that your family is in my thoughts.

Take care.

5:50 PM  
Blogger Moxie said...

Pazel, this might have already been ruled out, but are they sure he isn't tongue-tied (ankyloglossia)? It would make it impossible for him to latch on to you and difficult to take a bottle nipple.

I'm so sorry this is happening to you guys.

5:59 PM  
Anonymous oliviadrab said...

Prayers, so many prayers, all headed Jack's direction.

6:12 PM  
Blogger sherry said...

Pazel, I'm so sorry. I'm sorry you're dealing with all of this. Know that we're all thinking of you and Jack and sending healing vibes to you both with all our might...

6:41 PM  
Blogger amyesq said...

Praying so much for you right now.

6:53 PM  
Anonymous Anonymous said...

Lurker coming out to say that I am so sorry to hear this. Along with everyone else I hope that it is a simple problem, relatively easily remedied.

Also, I am an NICU social worker. If you have any questions, comments, anything, please email me at rosebr@ucla.edu.

Thinking of you.
Rose

7:50 PM  
Blogger DeadBug said...

You are in my thoughts. Hoping for the best possible resolution.

--Bugs

8:51 PM  
Blogger Rachel said...

Just sent over via Soper's blog -- full of good wishes and positive thoughts. I'll hope for "just" a really bad scare that turns out to be something to tease him over on Prom Night. Fight on, little baby -- hang in there, mom.

9:06 PM  
Blogger wessel said...

Also came over from Soper's blog and wanted to say I'm so sorry, I'm thinking of you and your baby, and that I'm SURE he will be fine as it sounds like he is getting expert care, but I know it must still be so terrifying.

I just glanced at your previous post in which your doctor told you not to worry about the dry diapers and lack of stool--that is a shame. The nurses should always tell new mothers, as part of their postpartum training checklist, to report 8 hours of dry diapers and 24 hours without a stool. I'm so glad that you were on top of it and knew to call the doctor. Not all new mothers would have known to do that.

I'm hoping and praying that you get reassuring news today.

11:36 PM  
Blogger wessel said...

I'm sorry, I misread the part about the doctor and what he was unconcerned about--just strike that. (Though I am surprised the nurses didn't pick up on the lack of urination.)

11:40 PM  
Anonymous Julie said...

There are about five thousand things I'd like to say. I will condense them into simply letting you know I'm thinking of you, and am here if you need to talk.

1:12 AM  
Anonymous Anonymous said...

you are in my thoughts all the time and your whole family are in my prayers.

lots and lots of love to you

xxxooo
tertia

4:10 AM  
Anonymous thalia said...

Pazel I'm so sorry this is happening. I will keep my fingers crossed that the less serious diagnosis is true. Sending you all my support.

9:09 AM  
Anonymous libby said...

Oh sweetie. Coming out of lurking to tell you how sorry I am all this is happening. Hoping for a quick resolution and that Jack is home soon. Take care of yourself, please.

9:10 AM  
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