a patient patient

After being home for about 48 hours, Mr. Desmond ripped his feeding tube out of his nose. Shane and I stared at him for a minute. So, that's how you really look without anything at all coming from your body, eh? We decided not to replace it until we saw the pediatrician the next day.

As soon as we walked into the house, I knew that I would no longer be following the hospital feeding schedule. I knew that it would make me batty. I started breast feeding the little fellow. In terms of eating, he's no Mahalia. He suffers from reflux. In the noisy hospital I couldn't hear the gurgling that his guts make as he swallows. I'm not sure of the physiological causes of the reflux. I'm assuming that the organs developing in the chest cavity affected their normal growth. I wonder how long the reflux will last? Perhaps a notebook for writing questions down is a good idea? I'm starting one now.

There's an amazingly wacky lactation consultant that's a bit of a Brooklyn legend. Freda (pronounce like Fredda) Rosenfeld lives in one of the giant victorian homes in the neighborhood and has lived there for 30 years. She has an amazing Brooklyn accent and belongs to a theater club and was very excited to learn that Shane could get her some tickets to Exit the King. She watched Desmond breast feed and offered advice on exercises to deepen his suck. The woman knows so much about breast feeding that it's borderline creepy. As my sister said on the phone, "most consultants are a little weird." She also said at one point, "I can see in your eyes that you need to poop." She was talking to Dezi not me. She laid him on his back and rubbed a spot in the middle of his foot. He got really quiet and pooped. No lie. Anyhow, I was so happy to meet her and work with her and it gave me confidence that we could work all of this feeding stuff out.

The pediatrician recommended that we lose the tube and see what happens. I'm all for it. We'll be seeing her again on Friday to make sure weight has been gained.

I would be lying if I said that leaving the hospital has been nothing but totally blissful and smooth. Holy crap, bringing a baby home is a rattling experience even under normal circumstances. And here we are after having gone through this long, stressful experience with a new baby and it appears that we forgot to pack the "Desmond Endsley Baby Manual." There have been tears--from me, from Dezi, from MayMay. Shane is my super hero right now, taking good care of all of us and working.

It goes without saying, going from one to two children is insane and it's going to take a minute to find any sort of rhythm. It's the second time during this experience that I've thought to myself, "If I had only known...I would've been a more supportive friend..." Mahalia has been amazing through it all. Tonight when she burst into tears because I couldn't help her right away I had to explain to her that we're all going to have to be really patient with each other. It broke my heart a little. I was saying it out loud for my benefit as much as hers. I look back at old posts (as was suggested by a friend) and realize that we've come so far and that Dezi has come so far and that we will only continue to do so and it calms me down. Thank God for friends, eh?

HSW--AKA home sweet home

When we arrived at the hospital this morning he was especially chipper and interactive, like he knew we were coming to hake him home.

He passed the car seat test with flying colors and slept the whole way home from the hospital.



Mahalia is psyched to have a real live doll to play with. Here she is covering him and uncovering him. We three took a nap this afternoon while daddy played a show on Broadway.



It is such sweet relief to be home.

A Mixed Bag

Baby Mahalia died last night.

Her bed was right next to Dezi's and I watched her get sicker with each passing day. Having seen her decline, it is a relief to know that baby Mahalia's suffering is over. I sat with Mahalia's mom,Patricia, today in the hospital lobby and listened to the story of her passing and was so deeply moved by her devotion to her little baby. She is 26. Partricia and her husband are cremating Mahalia's remains and going home to Peru to be with family.

What a mystery life is.

What a month this has been.

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Dezi will have to sit in his car seat for an hour tomorrow to make sure that his reflux doesn't present problems in that position. The nurse who is choosing to put him to the test said she was just being very cautious. There will surely be papers to sign, Drs. to wait on, etc. Then Dezi will see the sky for the first time, breathe some fresh air, take his first car ride, see his first tree, see his first cat, and be in his beep free home for the first time.

Forecast for tomorrow: 75 degrees and sunny. I am a ball of nerves.

code HAM alert--AKA High Agitation Mode

On Thursday the nurses still insisted that he'd be coming home on Friday or Saturday morning. I asked tentatively, "Ummm, how will I know when they plan on sending him? I mean, I don't mean to be a pain but my husband is working and I have a 2-yr old so I sorta need to plan my life. I'm going to plan for a Saturday pick up"

My brain is moving faster than ever, not always productively. I start one simple task and in the middle, remember something else I started, and then none of it really gets done. There's a necessary trip to The Fairway, laundry, and other normal domestic irritants that need to be completed.

I am nervous. There will be two children to look after starting in about 24 hours. Shane will help me fetch him from the hospital but will then be heading to Times Square for two shows and I will be here, testing my skills as a mother of two children. There's nothing like a little trial by fire.

Mahalia has a little cough and I feel a little nagging ball of anxiety forming in my chest--what if Dezi get's a cold? I'm starting to think of where I will strategically place bottles of Purelle throughout the house.

I've placed the NG tube twice. It was not so much fun. I gagged the crap out of Dezi but he recovered quickly. Me, not so much. Why is is that nerves always seem to know which part of your body to shake in order to make the nerve inducing task the most difficult? My hands were shaking like crazy and the nurse rubbed my back, "you're okay." Shane too, standing next to me, offered reassurance.

I feel confused about feeding. He's on such a strict schedule at the hospital and it's not clear if I'm to uphold that or if I can relax a little bit about the feeding time, letting Dezi find his own rhythm.

There will be a visiting nurse coming to our house in Brooklyn the day after he comes home, just to make sure we're okay.

I talk to friends on the phone and am incapable of carrying on a linear conversation.

My brain is a pinball. Even now, I can't write a coherent blog post. I'm going to stop trying. I'll try again when I'm not functioning under HAM circumstances.

HE'S COMING HOME THIS WEEKEND

NG

I made a joke with another NICU mom that as a form of therapy for the parents they should let them smash one of the NICU monitors to pieces upon discharge. One really doesn't realize how wonderful it is to hold a baby who is unfettered by cords until holding one who is. One wrong move with Dezi and it's a chorus of beeps. I can't help but think that on some level he won't miss all that beeping when he comes home.

On his one month birthday he finally took a whole feed from the bottle. I was not prepared for the amount of time it might take for Desmond to eat as he should. I didn't know that eating required so much coordination of breath and while it's hard for me to comprehend it's clear that it really is a lot of work for a kid like Dezi. I've had moments of frustration this week. The attending physician in this NICU had mentioned to me on Wednesday that she wanted him to go home without a feeding tube. Knowing this, I felt that I could be patient this week. She left on Wednesday for Passover. So when I arrived on Friday and the nurse handed me a packet of papers and said, "read this. I'm going to show you how to pass a nasal gastric tube today" I heard a little crack in my heart. (The nurse doesn't know about my glass heart syndrome. How could she?) I couldn't help but to blurt out, "I'd like to talk to the Dr. please" and started strongly questioning her. The nurse is young. The nurse is Filipino (go figure.) She seems rattled by my questions and retreats to the desk and calls the Dr.

My logical self knows that Desmond needs to come home, tubes or no tubes. He is so alert. He is much more alert than the baby next to him even and they share a birthday. My logical self knows that once he is home I will be able to feed him and it will only be a matter of weeks before he gets the hang of it. My emotional self feels scared a little bit by the thought of having a baby at home with a tube coming out of his nose. I think about the questions people will ask me on the playground and I don't feel like answering them. I don't want to talk about CDH anymore or have people look at me like they feel sorry for me. I'd like for my life to resume now.

All that aside, I read the papers as I should. I learn how to measure the tube and how to apply the tape to his cheek. I learn how to push air into his stomach and use the tiny stethoscope to listen for the slight whooshing of air as it enters his belly. I practiced putting the NG tube into a doll and stood by his bed and gave the young, filipino nurse step by step instructions so that she could make sure I understood how to do everything. One time in college an ENT put a tiny camera into my nose and down my throat to look at my vocal cords. It did not hurt and I think about that as the nurse pushes the tube into Dezi's nose. Mahalia heard him cry a little bit and was worried. But he is a good baby, a quiet baby who does not complain much although he does have much to complain about, really, when you think of it, and he settled quickly.

Earlier in the week I bought a magazine to read on the train home from the hospital. It is Oprah's magazine and even though I have a problem with how she puts herself on the cover every single month I do enjoy looking at her products of choice. The woman has good taste. Anyhow, there's a beautiful piece inside that magazine called 'Spring Awakening' written by this guy named Rick Bass. Wouldn't you know, it's about the birth of his first daughter who stopped breathing during her first night of life. They had to put her in an incubator and he stared at the monitors sitting at her bedside all night long in case she woke up. I love most what he says about parenting, "What I think I felt, that next day, was a newness of responsibility: an utter and concrete reminder that I was no longer the most important person in the world–-that, in fact, I was nothing, and she was everything." I'm feeling it so hard right now and am reminding myself to be brave in the face of those things that seem scary to me.

Here's the link to the full article if you'd like to read it: http://www.oprah.com/article/omagazine/200904-omag-rick-bass

In other news, some really wonderful and generous friends pitched in to hire some cleaners to give our apartment a once over. If you're reading this now and are one of those people, please know that Shane and I are appreciative beyond words. It was such a relief to walk into a tidy and orderly home and it was a wonderful treat at the end of a tiring day.

Hanami

After pumping this afternoon, behind closed curtains, I suddenly had the overwhelming urge to breast feed. I hadn't done it yet with Dezi. I've been afraid to try in case it slowed down his progress with the bottle somehow. I'm also slightly afraid of the headstrong nurses in the NICU. As wonderful as they are, being a nurse seems to require a certain level of anality (no offense, Marty! Have you ever seen the towel cupboards inside my mother's house? That's right, she's a former nurse.) and I didn't know if breast feeding was part of the Dr.'s orders or not.

My sweet little boy latched right on and started slurping away. I have to admit that it was the most wonderful feeling. You're probably thinking that I cried, right? I actually managed to keep it together. It made me feel totally euphoric and I'm so happy that it looks like the D will get to breast feed after he busts outta' that joint.

Have you all seen the Cherry Blossoms at the Brooklyn Botanic Gardens? It's giving me warm fuzzies all over thinking about sitting under those pink puffs with my boy and Lady M. If you're reading this and live in the city, let's a make a date to do that together.

Little Dude

Feeling better now. Thanks.

The first day in the NICU the NICU Psychologists taped a letter to Desmond's bassinet. The first page was a welcome letter. The second page had quotes from parents describing some of the emotions that a person might experience during their time in the NICU. I remember one of them said, "Having our baby was supposed to be so joyous and it ended up being a nightmare." The third page was a list of helpful tips. I can't find the list now but I remember the first few: Eat, Sleep, Take Breaks. Such basic tips but so easy to forget. I've been thinking about my hardest days since we've been in the hospital, those days when the tears come easily and realized that I'm always my most tired on those days. Usually, I've also put off eating and most certainly have not given myself a break.

Spring is really here now, marked by the opening of the Prospect Park Carousel. A friend looked after Mahalia who reported that she went on an adventure with Anna through the park. I made my way to the hospital while Shane played a matinee. Dezi chugged down 65 ccs which means we're in the home stretch here. I sat on a bench back in Brooklyn eating my favorite ice, Cherry Chip Explosion and letting the sun warm my skin. At the hospital I opened the blind for Dezi to get some sun too. He seemed to like it.

He has a soft personality and will probably have a soft voice and manner like his daddy. During my brief visits with him I've been trying to be extremely present and in the moment, it's a good skill to practice. I sense that he is starting to recognize me. When I hold him against my skin he promptly falls asleep.

I bought him a new and fabulous bouncy seat for his homecoming. Thank you for sending supportive messages. They help and mean the world to me.

Pity Party

I'm posting at the end of a long day at the end of a long week at the end of a long month. I'm feeling real sorry for myself so if you don't feel like reading a healthy dose of bitching and moaning, do yourself a favor and close this window immediately.

It is rainy today in NYC. I'm officially tired of hauling ass up to Northern Manhattan. It took two hours this morning to get to the hospital. Put a little rain on the roads in the city and those drivers who normally drive like maniacs start acting like they've got their drivers ed instructors in the passenger seat. We spent approximately twice as much time in the car as we did with Desmond.

He is supposed to be home now. Compared to the two pound NICU babies who are still supposed to be cooking in utero, Dezi looks like a 14 year old. He is more alert with each passing day and I can't help but think that he's bored in that NICU, staring at the Dallas BBQ across the street. It makes it harder and harder to leave there after our all-too-brief visits.

He's made good progress with the nipple this week but is still not eating enough from the bottle. My heart is like glass and it takes up more space in my chest than it should. When the Dr. utters even the slightest muttering that can be construed as negative I can feel parts of my glass heart shattering. She says to Dezi, "You're a big talker! You should be eating 45 ccs!" He has only had 30 and I want to cry. I know that means that we'll be spending more time here. My giant eyeballs give me away and she starts to backtrack a little, "but that's okay. we'll wait for you. take your time." My tear ducts are like over filled water balloons today. I haven't really cried but feel like I could at any moment. It is because I am tired.

Patricia, little Mahalia's mom, comes to Dezi's bedside to chat with me. Mahalia has surprised everyone, living longer than they think she should. They are all waiting for her heart to stop. I am having trouble talking to her and looking at her in the eyes. It is too painful and in the moment I cannot think of anything to say to her.

I started bleeding today from the old private parts. I call Dr. Daddy to ask if I should see my OB. We chat for a minute and he says that I need rest. Mother picks up the phone, "You've been pushing it like you never even had a baby." I sense that she's been holding this one back and I don't know what to say. If given the choice, believe me, I would've spent the last 4 weeks in my pajamas with my feet propped up on the coffee table checking out Ellen DeGeneres. It was not in my cards.

Ho hum. On a positive note, my Mahalia is asleep now. She held Dezi again today, singing to him and gently rubbing her forehead against his head. I told her at bedtime that I was really proud of how gentle she was with him and what a great big sister she is. She said, "He's coming home really soon." I know she is right. He will be home soon. The waiting, though, is getting brutal.

Tenderoni

There's a really great priest that makes rounds in the NICU. He wears a Yankees watch and hands out little stuffed animals to the babies. Every time he approaches me at Dezi's bedside he says the same thing, "Oh!! Desmond! It must be Desmond the 4th or at least the 3rd! That's too big of a name for a little baby." On Sunday he pointed to Dezi's toes and said, "When they start moving their toes that way it means they're getting ready for the front door."

The very next day, the nurses informed me that he was, in fact, going to graduate to the 8th Floor AKA the step-down NICU. It's quite peaceful there. There is way less beeping, no babies being shuffled to the operating room and no teary moms in hospital gowns. On this floor the babies are one step closer to going home. Dezi's last challenge is to take all of his feedings from a nipple (not mine but one one on a bottle.) He is still getting breast milk thru a tube and on Monday had a hard time eating from the nipple. Delores said that he was getting tachypneic while eating which means that his breathing was accelerating significantly while eating. The Dr. mentioned that it wouldn't be out of the realm of possibility for our boy to come home with a feeding tube. Her feeling is that he's doing too well in every other way to stay at the hospital, that it would be better for him to be home. Having a feeding tube would require that while Dezi continues practicing eating from a nipple and as long as he needs the feeding tube, Shane and I would be responsible for changing the tube weekly. It's entrance is in his nose and the tip is in the stomach, right, Dad? Sounds a little scary, eh? Anyhow, I want this kid at home. I want him home so much that it's starting to hurt a little bit. So I'll take him any way I can.

The GREAT news is that he did some good eating yesterday and even better eating today. Dolores excitedly said, "He wants to go home without that feeding tube!" So I'm hopeful that after a few more days of practice he will really get the hang of it and we can indeed bring him home tube free.

He's a little tenderoni and I wonder if I'll be forever cautious with him in life knowing the intense course he had in his first weeks. I worry that I'm about to create a little Mama's boy. When he's old enough and tells me not to be so protective I'll share this blog with him, give him a sense of what he came from.