Monday, April 11, 2005

Day 2 - Denial Runs Rampant

Today we drove to visit Jack in much better spirits. We even put the car seat back in the van to have it ready just in case. You know how it is. To not have it would mean that he would not be coming home. To have it means we're ready to leave at a moment's notice.

Shortly after we arrived, another baby in the NICU died just a few feet away. Even though they had the screens up and by courtesy you avoid looking over, you know what's going on. You can't help but hurt for the parents. The baby was a sick early premie, one of twins except the other twin isn't in the NICU and would be too little to be home. I couldn't help but think of Tertia.

On the opposite end of the spectrum, Jack was looking very good. After being under the billi lights all night his skin color looked much more normal. After being flushed with saline every 2 hours, his abdomen also looked normal. He looked so healthy and beautiful that I just wanted to take him home. Thank you for helping. Obviously he doesn't belong here. You've all done such a fantastic job and we really appreciate it. We'll be taking our baby and going home now.

Instead we were approached by the NICU social worker who wants to set up a meeting with us and gave us a discount for 30 days on parking. We don't need it for 30 days. We'll be leaving anytime now. And the neonatalogist told us that they wanted to put in a perk line (definately misspelled) because it will last a lot longer than some of the others he has in. Why go through the trouble on such a healthy baby? It's not like we'll be here much longer. And a nun came up to hug me and give me prayer options. Thank you but there's so many other babies in here that really need your help. Jack is just fine.

Denial ain't just a river in Egypt sweetie.

Eventually the surgeon came and talked to us. He would be doing a biopsy of Jack's rectum tomorrow to test for HD. Then it will take 3 days to get the results. And there is only a 50% chance of getting conclusive results either way. If we don't get clear results, then another biopsy but this one a bigger one. And another wait for results. And if we do get clear result of yes, then we have to do biopsies until we find out where the diseased intestine ends and the healthy part starts. And if we get a clear result of no, then we have to do other tests to find out what is wrong.

(Sorry for skipping around, but my mind is very scattered. And my spelling and grammar are worse.)

This morning when the neonatologist visited with us with his intern, he told us that there is another possible reason for the GI issues. "He could have cystic fibrosis. We'll do a DNA test for it, but it will take 2 to 4 weeks to get results." He said this like "We could have steak for dinner, but it would require heating up the grill." It's like he didn't even know the significance of his words. I just looked at him because I couldn't figure out his nonchalance. What do you say to that? Frankly, my stress account is already full, so I slipped this one into my back pocket to be opened later. Because we don't have any CF in our families, it is only a small possibility, but one that has to be considered if he doesn't have HD.

And here I thought that if he doesn't have HD we were going to be happy.

When we were talking to the surgeon about the biopsy and possibly following biopsies, Matt really went after him with questions. If I'm too compliant a patient, Matt can be too noncompliant. It's only because he knows they make mistakes and love to do surgery, and can miss out that these are real people they're working on. He wanted to know why we couldn't just bring him home, feed him, and monitor him to see what happens. The surgeon told him that we could not take the baby out of the hospital, and this really rubbed Matt the wrong way. This is still our baby. The surgeon had to stress to Matt that the baby was very sick yesterday, and his intestines were extremely swollen. He's still recovering and healing from the trauma. He's not taking any medication that would make him sleepy, yet he's slept ever since he was admitted, at that point 24+ hours straight. A healthy baby would have periods of being awake and now that his belly and intestines had been empty, he should be very hungry and upset but he's not. His X-rays were abnormal, and we have to remember that we already tried the test of bringing him home and we know how that turned out.

But what Matt was trying to say was not his words said but were feelings from his heart. What he wanted to hear was that everything was absolutely, positively necessary and not too invasive. He needed to hear that acting seemingly slowly may be very hard on us, but was in Jack's best interest and their goal was to get him home as soon as possible but safely. And he wanted to know what was wrong, and how bad, and what for sure was going to happen, and when he would be coming home. But there isn't an answer to these last questions and although Matt knew it, it was what he really wanted to know. And of course I did too.

So at this point we know nothing except that we have to ready ourselves for a much longer stay than we expected. This point all by itself is devastating to us because it is so hard to be away from him and everything about the NICU seems so serious and wrong for our baby. I can't imagine what will happen if he has HD or CF, because I don't want to. I have to hold out that he's healthy but needs time to heal, and they have to run their tests to rule everything out. Matt says he wants a "Do Over" where we go back to when we happily brought him home from the hospital. I want to bring him home too but be able to nurse him without him screaming. I look around here at the house and I can't help but think that we were so close to having it right. This is not how it's supposed to be. He is supposed to be home and healthy. He's supposed to be sleeping between us right now, waking to nurse and making his little cooing noises. Our daughter is supposed to be holding her baby brother instead of asking me when he's coming home. And I'm supposed to be feeding him instead of this constant pumping and freezing.

Nothing else matters right now. I called our maid service this morning to postpone the service, and they said they would be charging us $25 fee for not giving enough notice. I'm sorry, our baby was just admitted Sunday when you were closed so I'm not sure how I would give you more advance notice. I'll pay the fee, but you Merry Maids have just lost a customer.

Work and school don't matter. I have to remind myself to file an extension for our taxes because they will not be done on time. My husband cancelled the appointments for his car service and the cable company installing HDTV. We have to remind each other to continue to give our dog her antibiotics. And I find myself becoming totally intolerant of everything because all my tolerance is being used up by everything going on with Jack.

It's amazing that even when things are down, we keep on going. I sit by little Jack's side, rubbing his head, holding his foot, or just gazing at him, and it's starting to feel normal. Today I pointed out how Jack is making sucking motions with his lips.
"He's dreaming of breastfeeding. He's saying, 'Oh Boobie, I'm so sorry I turned you away. I miss you and I know now how wrong I was. You are so beautiful Boobie with such a lovely dark huge nipple, and I know now you were just trying to take of me. Come back to me Boobie. I swear I'll make it right this time. C'mon Boobie, let's try this again. If you come back, I'll never let you go. We could try any position you'd like and I will love you long time. Oh and before I forget, bring your twin sister, she's also mighty hot.'"

Sure, goofy, but I have to take any chance to laugh just a little if I can. Have to.

69 Comments:

Anonymous Amy said...

Pazel - I am so very sorry your sweet little boy is sick. Your family and especially little Jack will be in my thoughts and prayers tonight.

12:47 AM  
Blogger Jen P said...

Pazel, I can't imagine how hard today was. It's truly inspiring you managed to end your post with humour and laughter. Absolutely amazing.

My thoughts are with you and your husband, Janie and Jack tonight. I'm hoping there's nothing but good news, and not so sucky news, on the horizon.

Best wishes.

12:52 AM  
Anonymous deborah said...

Here's hoping your little boy's NICU stay is shorter than expected. I'm here for the duration, sending lots of love and good wishes your way.

3:54 AM  
Blogger Toni said...

Thinking wonderful thoughts for little Jack...and your family.

4:37 AM  
Anonymous Anonymous said...

More positive thoughts here, and a look of awe at your remembering things like the maid service, taxes, and all.
Plus some giggling at Jack's smooth-talking the Boobie.

Slim

4:49 AM  
Anonymous Anonymous said...

Pazel,
I am just holding my breathing and hoping the best for all of you. I will be thinking of you all day today.
Heather Ann
bytheskinofourteeth@primus.ca

5:38 AM  
Anonymous Anonymous said...

Pazel, I'm so sorry to hear about Jack. You are all in my prayers. Hugs coming your way.
-jen jenbuster@gmail.com

5:54 AM  
Blogger Floyd said...

Delurking to tell you that you are all in my prayers. Much love to you and your family.

5:59 AM  
Anonymous Soper said...

In day 2 of denial w/you....Hot boobies!

6:04 AM  
Anonymous Menita said...

Oh Pazel, I am so sorry. I am thinking of the four of you, and hoping Jack pulls through well and soon.
What a nightmare, I am so sorry, dear P.

7:09 AM  
Blogger Lala said...

Dear G-d:
Please take care of little Jack Henry. Give Matt and Pazel the strength and courage to fight for his life. Give us, their friends, the strength to support them both in deed and in thought.
Amen

7:10 AM  
Anonymous Anonymous said...

I am so very sorry! Please know that I will continue praying for you and your family that baby Jack can come home, healthy and happy as soon as humanly possible!

~ Ninotchka

7:34 AM  
Blogger Jody said...

Dear Pazel,

My heart is with you and I will be praying for Jack.

Ask the doc if he thinks Jacks lethargy could possibly be due to his very high bili level. Babies with high levels behave as you have described Jack since the day you took him to the hospital. They have dark, reddish, scanty urine, lethargy, and the babies can get impacted stools due to dehydration as a result of not nursing due to the lethargy. It can be a vicious circle.

Did you have gest. diabetes? I am new to your blog and was not sure.

I hope you don't mind my bit of assvice. I admire you for drilling your doc. There is no such thing as too many questions when it comes to your baby!!

Many prayers for your family.

7:54 AM  
Anonymous Anonymous said...

I'm thinking of you and your family, praying that things will be okay.

7:57 AM  
Blogger obabe said...

I found your blog today through alittlepregnant... My son was diagnosed with HD at 9 days old, and had surgery at 10 days old and 2.5 months old (removal of colostomy). Your story sounds very similar to ours - the CF possibility being tossed around carelessly, the NICU stay, etc. If you have a moment, please email me- I'd be more than happy to share our story and help you with this scary process if your son does have HD. Briefly - its not all that bad: 1. he does not need a colostomy bag - hes wearing a diaper anyway. 2. our surgeon specilizes in HD and laproscpoic surgery to correct it- and he does it as soon as the babe has had some time to heal from the first surgery. none of this waiting to gain lots of weight, etc. you can actually do everything at once, if you can get the colon clear and the baby stable. 3. he will be okay!! today our son Benjamin is a gorgeous 20 month old toddler who you would never know had two surgeries, except when hes not wearing clothes.

Its going to be okay, really. Please email me if you have time: orah@levkatz.com. My thoughts and prayers our with you, I remember every moment of that journey.

8:02 AM  
Blogger Erin said...

Pazel, my thoughts are with you and your family. I can't imagine what you must be going through. My prayers go out to Jack that he can go home soon.
-Erin

8:11 AM  
Blogger Janis said...

Just wanted to say you and yours are in my thoughts and prayers.

Hope Jack is home soon.

8:16 AM  
Anonymous Danae said...

Thinking of you and yours and sending much love your way.

8:31 AM  
Blogger Beaver Girl said...

I'm so sorry. Praying for you and your son.

8:42 AM  
Anonymous Monica said...

Pazel, I'm so very sorry. I'm thinking about you and your family.

8:54 AM  
Anonymous Louise said...

Followed the link from alittlepregnant. So sorry to read this -- I read your beautiful post the night before you went in for the c-section, and I never would have imagined you would be needing to post updates like this. You, and your family, and especially that little baby will be in my thoughts. Take care of yourself.

8:58 AM  
Blogger Anna H. said...

Thinking of all of you.

xxoo

9:27 AM  
Blogger cat said...

You family is in my prayers and thoughts. I'm so sorry and hope that all of this turns out ok.

9:36 AM  
Blogger ThreeBees said...

I'm so sorry. You and your family are in my thoughts and prayers.

10:06 AM  
Blogger Blue said...

Thinking of you all and hoping for the smoothest resolution to little Jack's problem.

10:18 AM  
Blogger Jen said...

My thoughts, love and prayers are with you and your family. What a sad, terrible way to spend your first few days as a family. I hope little Jack's ordeal ends soon, with him going home again, healthy and happy and nursing like he was born to do.

10:25 AM  
Blogger Wavery said...

Rooting for little Jack.

10:31 AM  
Anonymous Anonymous said...

I hope you get answers soon. I always did better with answers because things seem to be back in our control again. The pick line is actually good because it means they won't have to keep poking him over & over (as babies blow their lines easily due to their tiny veins.)
XO
Marla

10:48 AM  
Blogger HomeFireBlue said...

Pazel, I'm here via Soper's blog and let me say up front: I hope Merry Maids burns to the ground tonight.

I have you and Jack in my thoughts and I'm here for the duration as well. Keep us posted and take care.

-Blue

10:49 AM  
Anonymous Anonymous said...

Thinking of you Pazel. Many prayers you way.

xxoo,
Emily

10:50 AM  
Blogger Anotherjen said...

I'm so sorry that things aren't perfect for you right now. After all you've been through- they should be! I hope that it's the best case senario and Jack'll be home soon.

(and i think you might be talking about a PICC line- Peripherally Inserted Central Catheter- longer term IV. These things are great- from a nursing perspective- once it's in- no more IV pokes, and when he doesn't need to be hooked up to the fluids, they can heparin lock it, so you can hold him without the IV tubing.)

-sorry, just got nursey there for a minute. any questions, let me know. I work with sick kiddies every day. I know this sucks.

10:54 AM  
Blogger Katy said...

I am so sorry that you are going through this. I am praying for baby Jack and for all of you (and this from a mostly non-religious person). Take good care.

11:00 AM  
Blogger Aitch said...

This is all so scary. Even for a stranger to hear. My heart aches for you so much. It's really hard to put into words just how much I am feeling for you and your family, but I believe in prayer and goddamnit I will be praying so hard for Jack, that he makes it thrhough just fine.

Please hang tough and keep strong.

11:32 AM  
Blogger The Lioness said...

I'm thinking of you all, Pazel, and hoping you have answers soon - good ones. His colour improving is wonderful.

11:39 AM  
Anonymous B. Mare said...

Oh, Pazel. I just wanted you to know that I am thinking of you and hoping with all my heart that everything will turn out fine. So sorry that you and your family are having to go through this.

11:50 AM  
Blogger Janet said...

I just wish I could push the fast-forward button on life for you...to get to the point where the docs tell you little Jack is going to be just fine and he gets to go home with you.
But until then, please know that I am sending you my love, thoughts, and best wishes.
I am thinking about you so much right now, and thanks to that last part, now I have a visual of your boobie too.

All my love,
Janet

11:58 AM  
Anonymous Anonymous said...

Dear Pazel,

Your family and especially baby Jack is in my prayers and thoughts.
Hang in there -- This too shall pass. That was my mantra during my short -- but nevertheless damn scary - NICU stay with my baby boy.

1:53 PM  
Anonymous alex said...

That was heartbreaking and achingly sweet and funny all wrapped into one....good job on the processing.

My heart goes out to you right now and I will be saying lots of prayers for the family.....alex

2:06 PM  
Blogger Carrie said...

I can't post everything I am thinking because it is bringing back memories I wish to forget, but please know you are in my thoughts and that you will get through this.

2:17 PM  
Anonymous emma said...

Sending love and hope to you and yours.

2:44 PM  
Blogger Indigo Wolf said...

I don't know if I've ever commented here or not, but I always see you in the if blog circles (like Chez Misscarriage, A Little Pregnant and So Close) commenting. I didn't know you live in the SF Bay area. I actually live in The City.

Anyway, I hope little Jack heals very quickly and he really does just have a lazy butt. That way you will have every right to tell him to get his lazy @ss outta bed when he's a teen. ;o)

My thoughts are with you and your family.

-Carrie Jo

3:17 PM  
Anonymous Anonymous said...

I'm so sorry about Jack. I know how frightening the NICU can be.

And the PICC line is great- our baby had one put in- that way they don't have to poke him every time they needed blood, etc.

And oh God, I remember taking the empty car seat home. I cried, and cried, and cried.

Thinking of you...
Kate
http://babybrody.typepad.com

3:37 PM  
Blogger Cricket said...

Wishing you all my best in this difficult time. May it all pass quickly.

4:02 PM  
Anonymous Anonymous said...

I'm so, so sorry Pazel. Thinking of you.
Jen/VintageUterus

5:34 PM  
Blogger NSR said...

Prayers to you and your family.

5:41 PM  
Blogger wessel said...

I loved the boobie monologue! Too funny!

Oh Pazel, am hoping that you get answers soon, as well as solutions, and that you will be taking your little guy home sooner than you expected. Wishing you all the very best.

11:35 PM  
Anonymous Anna V said...

Another person delurking to say that I've had experience with a possible HD dx and I'm happy to talk with you.

However my guy didn't end up in NICU and I'm of no use there except to wish you and yours the best.

primaflora at gmail dot com

1:01 AM  
Anonymous Anonymous said...

Pazel, I am so so sorry you are going through this. My heart goes out to you and your family.

karen/naked ovary

12:22 PM  
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Even though you know that sadness (fear and anxiety) is a part of life, let's try to make it a small part of life.

With that said, here are a few tips to help you feel better when you are feeling down in the dumps. They are easy to do, easy to practice every day and they work!

1. Stand up straight, sit up straight. When your body is in alignment your energy can flow and when your energy is flowing freely, you can flow.

2. Smile! Yes, just smile. Easy to do and effective.

3. Repeat positive affirmations. Things like "I feel good", "Positive energy flows through my body", "I see the good in all".

4. Listen to some music that you like. It doesn't have to be anything specific, just something you enjoy. Certain types of music work better than others, but experiment and see what works for you. Studies have shown that Classical music and new age music work best.

5. Take some time out for yourself, relax and read a book, do something for yourself.

6. Meditate. Meditation is an excellent habit to develop. It will serve you in all that you do. If you are one who has a hard time sitting still, then try some special meditation CDs that coax your brain into the meditative state. Just search for "Meditation music" on Google or Yahoo and explore.

Our outside work is simply a reflection of our inside world. Remember there is no reality just your perception of it. Use this truth to your advantage. Whenever you are sad, realize that it is all in your mind and you do have the power to change your perception.

These tips will lift you up when you are down, but don't just use them when you are sad or fear and anxiety . Try and practice them everyday, make them a habit. You will be surprised at how these simple exercises will keep the rainy days away.

On a final note, if you are in a deep depression that you can't seem to shake, please go see a doctor. This is your life and don't take any chances. fear and anxiety

7:52 PM  
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That's OK, you need to have days like this, otherwise how would you know when you are happy. You need to have something to contrast your happiness with. What is black without white?

Even though you know that sadness (anxiety disorder child) is a part of life, let's try to make it a small part of life.

With that said, here are a few tips to help you feel better when you are feeling down in the dumps. They are easy to do, easy to practice every day and they work!

1. Stand up straight, sit up straight. When your body is in alignment your energy can flow and when your energy is flowing freely, you can flow.

2. Smile! Yes, just smile. Easy to do and effective.

3. Repeat positive affirmations. Things like "I feel good", "Positive energy flows through my body", "I see the good in all".

4. Listen to some music that you like. It doesn't have to be anything specific, just something you enjoy. Certain types of music work better than others, but experiment and see what works for you. Studies have shown that Classical music and new age music work best.

5. Take some time out for yourself, relax and read a book, do something for yourself.

6. Meditate. Meditation is an excellent habit to develop. It will serve you in all that you do. If you are one who has a hard time sitting still, then try some special meditation CDs that coax your brain into the meditative state. Just search for "Meditation music" on Google or Yahoo and explore.

Our outside work is simply a reflection of our inside world. Remember there is no reality just your perception of it. Use this truth to your advantage. Whenever you are sad, realize that it is all in your mind and you do have the power to change your perception.

These tips will lift you up when you are down, but don't just use them when you are sad or anxiety disorder child . Try and practice them everyday, make them a habit. You will be surprised at how these simple exercises will keep the rainy days away.

On a final note, if you are in a deep depression that you can't seem to shake, please go see a doctor. This is your life and don't take any chances. anxiety disorder child

8:10 PM  
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