Thursday, May 05, 2005

Day 25 in the NICU

Today is 'Thanks-Mommies Day' at Janie's school, or at least that's how she describes it. I'll be going there this afternoon for tea. She says they will sing us songs, serve us tea, and give us a present. It's one of my favorite days at her school.

The other day I had to call the ostomy supply company. They needed my Visa card to ship Jack's order of supplies. The customer service operator asked what company we used to use for supplies and I answered none since he's a newborn. She then commented, "How sad."

I don't need her editorial. I look at Jack and he is so sweet and beautiful, and he is stubborn and fiesty and lovey and snuggly and so easy to love. He is not sad. It is sad that he's had to go through this and sad that we can't bring him home, but he is not sad.

I was furious and upset and set off driving to the hospital to see him. Almost all the way there I remembered that I forgot to drop off Janie's lunch. Oh crap! I had to turn around drive all the way back. When I got there it was 30 minutes after lunch had started so all the kids were done. And there was Janie, sitting at the table with her hands together with the biggest smile when she saw me walk in. She had been sitting there the whole lunch waiting for me. The teachers had offered her other food but she refused saying that I was on my way. Can you imagine if I had completely forgotten? Scarred for life! As an apology, I brought McDonalds so her and I sat together and ate our Happy Meals. All the other kids surrounded her. "My Mom buys me McDonalds." "Can I have a french fry?" "Did you get a toy?" "How come you get McDonalds?" She was a sudden celebrity and as the commercial says, she was loving it. The next morning when she woke up she asked if I could do it again.

For Jack the results of the halter came back good with only 8 abherrent beats in the 24 hours. They want to continue to watch him for a few days just to make sure it's controlled, but he wasn't leaving anyway because of the antibiotics. His diagnosis for his heart is called Atrial Ectopic Tachycardia (AET) which is a type of SVT (fast irregular heartbeats) but narrows down the location in the heart. From what I understand his heart is producing some extra electrical impulses. AET is somewhat rare, harder to control than other types of SVTs, and he may not outgrow it. Everything is a wait and see. My discharge orders will be to check his heart several times a day with the stethescope to watch for the fast rhythms. The thing is, he doesn't have any symptoms while he's doing it. He can actually sleep through it. This means his heart is strong, but also means that I will be paranoid as heck always listening to his heart. He can go for hours with this and be okay, but I just know that I'll be a big scared freak.

We were hoping to get him home early on home health but that's not to be. We have home health benefits through our insurance company, but they won't do it with a peripheral IV, only a deep line. We do not want him to have another deep line. The deep line goes to his heart which we do not want irritated, and it was in the deep line where the infection started which caused him to need these antibiotics. And a deep line is so invasive. So he will be there through probably Tuesday just finishing up these antibiotics.

I've been getting to know some of the mothers in the NICU. We can talk about our babies issues and our same frustrations and we can also glory in each other's babies. We can look past the wires and tubes and just see the baby. And we see each other every day. We have our post-baby weight and our no fuss hair and maternity clothes. We complain about pumping and we are happy and a little jealous of those who get to take their babies home. We also try to figure out how to juggle our lives with the NICU. I'm lucky in that I work from home. For those who don't, they're trying to figure out how to take more time off when their baby comes home, and how to find childcare for a baby with special needs.

Yet I want to get the heck out of the NICU. I want to bring him home more than anything. In the NICU, to get something to eat I've got to put him down, go downstairs, overpay in the cafeteria for bad food, eat it down there, come back upstairs, and scrub back in up to my elbows. If he were home I'd just carry him into the kitchen and grab something to eat while I hold him. In the NICU, if he falls asleep while I'm holding him, I can either put him down or keep rocking him but I cannot fall asleep. At home him and I could snuggle and nap together (co-sleeping). I'd also like to feed him whenever I want. In the NICU, to feed him I have to take him into the mother's room or pull the screens around to try to get some semblance of privacy. Some mothers don't, but I'm just not that comfortable with pulling the boobie out in the open. Jack's bed is near a walkway between NICUs so there's a lot of traffic. At home I can whip it out whenever he wants. And no more pumping or waking up super engorged. And of course I'd like to see my baby without driving 45 minutes. It's a lot closer than some parents have to come to visit their baby, but I'd rather he be in our home, always just right there.

Patience, I have no patience.

He turned a month old yesterday. I feel like not only is my maternity leave slipping away, but I'm losing all my newborn baby time. I wanted to spend this time with him, leisurely loving him and taking care of him. Time feels like it's racing past and I'm not going to get that time.

I'm kind of a sad sap today aren't I? I don't think so, it just comes out when I start writing sometimes. Really I'm looking forward to my tea with Janie.

I try to keep my sense of humor. When we were in San Francisco on Sunday I forgot to bring my handpump. I got so engorged that I felt like I would explode. During lunch I went into the bathroom and behind the stall door I worked on hand-expressing my milk into tissue. It was a long, tedious process but I learned what Falker in Meet the Parents said was true. You can milk anything with nipples.


Anonymous Wrin said...

Not to be contradictory but in defense of the ones who forgot to tell you when your baby could go home, someone may have told you they could go home on antibiotics while he still had the deep line in, not realizing that the line was infected and if they pulled it out a peripheral line is only "good" for a few days with constant care and attention, and thusly you cannot go home with it. It's also easy to forget that parents don't know you can't just go home with an IV. It's also easy to forget to pass on to the person covering you that you told the parents the kid could go home on X day. You are usually more concerned with passing on vitals and other statistics.

I am sorry to hear about the people from the ostomy company making you feel bad; I don't know what to say for them because I know they were just trying to express their caring for you but obviously had picked an improper way to do so.

I am glad to hear the Holter turned out good. I'm also glad to hear that it isn't anything too superserious that will require surgery immediately.

11:09 AM  
Anonymous Anonymous said...

Pazel - just destroyed my whole post - very annoying. What I wanted to say was that you sound very strong and very brave and my heart aches for the time you spend away from your little man. I am also much in love with your trusting daughter. Thank you so much for the updates.
Heather Ann

11:25 AM  
Blogger Ninotchka said...

ha ha ha That's funny about Meet the Parents.

I hope he gets to come home really soon and without incident. You're right, your baby is NOT sad. That lady was totally out of line.

Thinking of you!

11:46 AM  
Blogger HomeFireBlue said...

I think the lady at the ostomy supply place meant that the situation was sad, not that Jack was sad. I agree that she probably was just blurting out a gut reaction (as in: it makes her sad to hear of a newborn requiring their products). It still sucks that it upset you though.

I'm so glad you posted, so glad that Jack's heart is strong. You'll have him home soon!

Thinking of you.


12:55 PM  
Blogger cat said...

That you can see the good moments in this despite all the frustration and problems and make a joke after all you and Jack and family have been through is inspiring. Thank you for continuing to share.

You all continue to be in my thoughts and really hope that he is able to come home soon.

3:18 PM  
Blogger Jen P said...

Pazel, you are a wonderful, brilliant woman, a mommy whose heart is being torn into a billion pieces and emotions are hard. No need to be hard on yourself about your feelings. You're simply amazing.

Janie is such a sweetie with her Mc Donald's plea. And Jack is a super strong boy, he's a fighter and he is NOT sad, as you said. He's amazing too.

Wishing you all the best.

4:33 PM  
Anonymous Simone said...

Oh Pazel, you are a wonderful mother, of course you are defensive of Jack. I'm sure you understand that it's difficult sometimes for people to know exactly how to react, or how to express their concern for you. I'm sure the "How Sad" comment is something you will hear time & time again, but it will never be uttered in a condesending way, I am geniunely sad that this has happened to you, to your darling baby, to your family But I never will think that Jack is sad, ever. Pity & sadness are very different, you don't need pity, but don't feel offended by the concern & sadness others are feeling for you.
Here every day checking in xx

7:05 PM  
Blogger L said...

Your boy Jack sounds very brave and strong. I think we know where he gets that from :)

9:42 PM  
Blogger The Lioness said...

You're not a sad sap at all, you're scared and angry and woman, who could blame you? You're also funny, which is incredible considering - but that last bit was brilliant.

I understand your reaction. You very much want for things to be normal again and that is a reminder of how they're not and clash w your perspective of it. But I will now risk your being mad at me. I've been on this side of "sad" for whole my life, I have had psoriasis since I was 5 and right now I have really bad psoriasis, w lesions slowly growing out of control and joining hands. The back of my hands is almost entirely covered so I can't really hide it.

From this perspective, I fully understand what she means. It IS sad that my body is becoming the landscape of an alien war, this is not how bodies should be. It doens't make me a pathetic person or a victim, but it is sad and yes, it makes me sad, and people often say the same to me as they pat my hand (er, the brave ones). I don't see Jake as a victim either, just the unfortunate recipient of very small odds. He has a family behind him at all times who will do right by him at all times as well, he's a fighter, he's being taken care of.

I0m doing this all wrong bcs what I wish is that I could somehow make it so that whenever you get that reaction, and you will get it a lot (how can someone not feel sad that a newborn needs an ostomy), you will not think they mean they feel he is a hopeless case to be pitied. They will feel sorry for his situation for sure, but you being the family provides a buffer zone within which he can, and is, happy. And anyone who knows you IRL will see that fast enough. I'm simply sorry this is an extra barb to add to the many.

3:28 AM  
Blogger Debbie1788 said...

You are an amazing woman...
I am completely in awe of you and your handling of this "bump" in a long road of happiness with your two beautiful children and loving family.

You hang in there, and realize that "sad" is certainly not a reflection on you or Jack, it is just for the situation, that you are handling beautifully!

You and your family are in my thoughts and prayers, I check in daily.

6:14 AM  
Anonymous Anonymous said...

I have been reading your story since alittlepregnant published your site. I am here praying for your family and for you.

Your daughter sounds wonderfully sweet, smart and intuitive. You are so blessed to have her during such a trying time.

Keeping up the positive thoughts for you!


7:26 AM  
Blogger Floyd said...

You are the bravest person I know - next to little Jack, of course.

Love the Meet the Fockers reference - humor is truly a gift in hard times.

Still praying for all of you. Hope you had a wonderful time with Janie yesterday.

8:45 AM  
Blogger obabe said...

I've been thinking about you constantly - I can't wait to read your first post from home, with Jack. My prayers are with your entire family.

With love from a former HD mom,

ps- i hear ya on the hand expressing in the bathroom. during both of benjamins surgeries, i missed our surgeon coming to give us the post op details b/c i was hunched over a toilet in the bathroom, expressing into it....

6:14 PM  
Blogger Anna said...

Happy Mother's Day, Pazel. You're doing great, even though you may not feel like it sometime. I cannot believe all you're juggling - you are an amazing woman. Janie and Jack are fortunate to have such a wonderful mom. Please hang in there. I'm hoping Jack can go home soon. Be well.

7:30 PM  
Blogger Tulipmania said...

Hi Pazel
I just wanted to see if everything is ok? You haven't written for awhile.
I hope you had a wonderful Mothers Day, you are such an incredible mom.

11:14 AM  
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