THERE AND BACK AGAIN

Turns out while Boston Children's Hospital is about the best there is, it wasn't the best for Brady. After a five day stint of stress and tests and more stress, our little man is back in capable and loving hands at Newton Wellesley Special Care Nursery. He has been on a "hunger trial" (for the second time) where his tube is pulled out and he's thrown in the deep end to see how much he will eat on his own. He's doing ok. Not great. If tomorrow he is still not taking enough his Naso-gastric tube goes back in as there is no sense in the boy being hungry and not growing.

My relief at having him close to home again is indescribable. Having a new plan with his neonatologist team feels even better. Here's the deal. One of two things can happen. Anytime in the next 10ish days his feedings will click and he can come home! It's possible. It happens sometimes around 43-44ish gestational weeks for a baby like Brady born at 28 weeks. Or, if he isn't clicking, then we will strongly revisit the g-tube option (which Children's declined to give him) so as to get this child home before he is walking.

The light at the end of the tunnel is back. Just thinking about it makes my shoulders unknot a little bit. Here is Brady three weeks ago right after his first failed "hunger trial." I am biased, but I think he's a very attractive child.

And here is my chubbers 42 weeks and 4 days today sans tube. And the look on his face tells you how he feels about being back with his Auntie Nurses and NWH. Get a load of those jowels and cute cheeks! And we have no idea where he got that Superman cleft chin

Sorry for the Hobbit reference in the post title. Nerdage hereby exposed.

I'M DONE

The little girl next to Brady is ten months old. She is, at all times, on seven different drug interventions, a feeding tube, a breathing tube, a PICC line, she had heart surgery twice, and a surgery today to fix something else I didn't understand (maybe an abscess that had grown after a thorocotomy?) and has to be moved a few times a night to prevent bed sores. She has never left the hospital. She is one of triplets. Her two siblings have been home since they were a few weeks old. And, the kicker that broke me of my selfishness today: her family is from Kansas City, Missouri. The parents stayed in Boston for several months but had to return to work and live, and come visit her multiple times a month in the hospital best able to care for their daughter's slew of conditions.

The nurse wasn't supposed to tell me those personal tidbits. It's almost as if she saw some of my tears and tiredness and wanted me to know I wasn't even close to the big leagues. I am glad she did. I needed to be given a dose of reality.

I get sniffly over being stuck in traffic for an hour on the way to the hospital.
That mom has hours of flying between her and her daughter.
I feel badly for leaving my kids every day for a few hours.
She has to leave her other babies for days.
I feel disjointed and out of control.
This woman's life is in two different places.
I feel sad it's 'taking so long.'
Now I stand chastened and humbled as I think about a little girl who may never go home.

Tonight, the pity party is over. I am thanking God Brady is doing so well, and praying for baby girl L and her Mama, who have unknowingly shown me what real courage is. Won't you join me?

HAPPY THOUGHTS

Thank you, dear readers and friends for the kind words and thoughts and prayers and emails of support. It's always scary to click "publish" on something like my last post because while the thing I treasure most when reading others' blogs is honesty and transparency, one doesn't like to come across as overly dramatic or looney. Sometimes I fear there is a reader, someone I know, who is rolling his or her eyes thinking puh-leeze. get a grip.

I am feeling better today. Resigned and hopeful and doing all that calm blue ocean junk. The hospital chaplain is my new best buddy. I am feeling very villaged. You saw if here, folks. Village is now a verb.

Here are the real heroes though. In all their glory. My happy thoughts. I just know they will make you smile, too.

UGLY

I've received many comments lately that I am so positive and have such a great attitude with having a kiddo in the hospital so long with five million three other little ones at home, etc. I just wanted to dispel any misconceptions: I have lost it.

The only people who are seeing the semblance of a functioning person are the kids. Every ounce of will power to be positive, fun, decent, not horrible, goes to my children. Other than that, I got nothing. I am inadvertently sabotaging pretty much all of my relationships. Including my husband, who likely thinks I need sedation. I am not sure he's wrong, except that if I am sedated I can't go drive to the hospital.

I shower once a week if I am lucky. I sleep about four hours a night. I am a slave to the clock. When I am with Brady I am sick to my stomach about leaving Tsega. When I am at home I go out of my head thinking about Brady all alone.

And make no mistake. At Children's, he is alone. This move to a new hospital is what has propelled me to fresh, new ugly heartache. See, at his last hospital, he was one of about eight babies. There was often someone to hold him, talk to him, keep him company. Even when things were busy, Brady, the favorite, got to hang out at the nurses station in a swing. Our good friends shoved sunshine and reassurance down my throat, and I knew that when I wasn't there, he got constant lovin' from a host of Aunties.

At Children's, he is one of 30. And they are all a lot sicker than he is. (And that, by the by, adds a whole other dimention of emotion to my crazy. Knowing that some families have it way worse than I do what-the-heck-am-complaining-about-suck-it-up-wuss). The nurses don't have time to sit with Brady and snuggle. He gets fed, and then is put back into bed to stare at nothing and listen to the hustle and bustle and incessant beeps and alarms going off. Last night when I was forced to leave him there seeing how distressed he was in a new place with new loud sounds, and - this is going to expose yet another character weakness- with a male nurse it just didn't sit right. It's not that he isn't a lovely man, but at the moment I didn't want to discuss my baby's latch on my nipple with a dude. He didn't say he knew how hard this was for me, or Brady is in good hands or do I have any questions? No. He didn't say anything. Nothing. He's a guy, and I felt totally lacking in empathy.

When I needed to leave, seeing how long it took for Brady to relax and calm down with me there, and knowing in a few hours he'd wake up to the same nightmare except I wouldn't be there to comfort him sent me over the edge. I don't know when I've cried so hard or prayed so hard.

God, please don't let my baby be alone. He was scared and I left him there alone. Please please don't let him be scared. Please comfort him. Please God, please, don't let him be alone. Please help him to feel peaceful and safe. Help him to feel safe. Please please please please please please.

After my pleas to God, I called my next line of defense, his Aunties at Newton Wellesley Hospital in hysterics. I hadn't realized the people holding me together were the women who cared for my baby day in and day out. Bolstering me each and every time I flew through the door with fresh clothes and pumped milk in my arms and a furrowed brow. Without them, I am no longer able to believe the message "you're doing fine." Because I'm not.

I think the biggest load of crap someone can say in a time like this is "Kids are resilient" or "He will be ok."
I don't want to hear that. I don't want to hear that someday it will be ok. I know that. I am not that far gone to think we won't survive. There is a decent chance all my children will turn out to be lovely human beings. That doesn't erase they hurt, the fear, the anxiety one tiny bit.

Last night and today I have had twelve ugly cries. Not misty eyed sniffles. Full on swollen eyes, runny nose, headache crying. I am afraid to go into public because when someone asks me how I am doing I am unable to answer with anything but honesty: sobs.

I am misery.

I need two of me and in the absence of two of me, nothing is good enough. I am not enough. Somwhere underneath this deranged psycho-mama is a faithful person. I believe in a God that loves me and loves Brady and can help bridge the Grand Canyon sized gap between what my kids need from me and what I am able to give.

That particle of faith is faltering right now. Though, I know that answers are coming. This is temporary. The doctors and I seemed to all jump onto the same page this afternoon about the goal being getting him home soon.

But for now, I have a headache. And I crave my son. And I want to feel like a human again. And I want to be someone my husband might like to live with in the future.

It's ugly. But I asked for it. I am going to quote my very own blog post from the beginning of January of this year:

"2009 was about humility. In a good way. Until 2009, I don't think I ever understood what it means to completely let go and open my heart to God's idea of what is best for me. It only took 29 years, I hope it doesn't take that long for it to happen again... Miracles happen. May 2010 bring us to those same depths of humility."

Can you believe I actually typed that? To be a nitpicker though, I asked God to bring me to the same depth of humility as the previous year. Um, God? This is not the same depth. I was in a plastic kiddie pool before. Now I am somewhere treading water in the Atlantic during a white squall.

Thank you all for being my life vest. You know who you are.

NOT REALLY WORDLESS WEDNESDAY

B-Boy is being transfered to his third hospital today. When the light at the end of the tunnel doesn't get any closer over the course of a month, you gotta get on a different track. As his docs say "We've tried our whole bag of tricks. He needs specialists." Hopefuly the folks at Children's Hospital in Boston will either get this boy to eat, or figure out why he has a hard time eating, and get him home asap. I ain't scared of no g-tube.

The boy who was born at 28 weeks, 3 lbs, is now almost 42 weeks and weighs 8lbs 10oz. I want my big, chubby baby home. And so does his Dada and siblings.



When roadblocks pop up, we think of Julie and Meazi. And sing over and over, keep on truckin'.

NEW TRICK

Please ignore the obnoxious squeaky Mama voice. Focus on the genius happy baby. Thank you.

BEING HONEST

Trying to go to the hospital twice a day which is not enough but has to be, keeping up on the copious laundry, being a good if not mediocre mother to the rest of the crew and an extremely crappy wife, pumping for two babies and then out of nowhere my milk supply cut itself by half this week (apparently there is something worse than pumping: not being able to get anything out while pumping) served with a dollop of 4ish hours of sleep for the last three months is taking it's toll.

Nothing anyone can do is helping. No, that's not true. I am receiving astronomical, heroic help from many. From neighbors, violin students' mothers, folks from church, my in-laws, random strangers. Yet no one can get me through this. No one can make it go away.

Barring a miracle this weekend my preemie boy is being transfered to his third hospital so feeding specialists can decide if he needs a g-tube. One of those feed-through-the-tummy things so he can come home. I am all about this. Get my child home. What is frying my brain is how I am going to get to that further-away hospital to see him twice a day, and not knowing how long he would be there.

I have to resolve my serious, pathetic issues about formula being poison because a) it's not b) it's not and c) unless lactation consultants can figure out where my milk went or Brady magically starts nursing and can get my supply back up, I am going to have to use it and not deem myself the most hiddous failure of a mother of all time.

I have to resolve my serious pathetic iussues about bottle feeding while I am at it. And not hate my body and circumstances and the universe for killing the one thing I feel like I had going for me in motherhood: nursing. It's my favorite thing to do in the whole world. I have two babies and I might not be able to nurse either of them. Brady is my last biological child. There aren't any more after this. This is my last chance to nurse a baby and I feel that priviledge being ripped out of my fingers.

For some reason this is sending me over the edge. I know I am sounding incoherant and dramatic. And maybe a little pathetic. But maybe someone out there in the internets gets it.

Does anyone out there have four kids, four and under, one of whom was recently adopted and a baby who was born too early and isn't coming home yet who's husband travels all the time? I can't be the only one in this mess.

Today I would like to go into a little coma until I am ready to face reality, pull up my bootstraps and get back to enjoying my sweet kidlets.

Just a temporary coma. I promise I will be fine again soon.

HOME THREE MONTHS

Dear Tsega,

You've been in our family and home for three months (and five days). I had no idea the story of your arrival in our family would become so intertwined with your baby brother, but you have not let that stop you from being a presence in this household. You are a force to be reckoned with. You are crazy smart. Yesterday in a baby swing designed for much younger infants you found a way to use your upper body strength to create momentum and pump the swing for yourself. You didn't stop at the nice back and forth, though. Mid swing, you caught the side bar and stopped yourself, only to let go so you could contine to swing. You did this over and over again catching yourself on the upswing, while singing and screaming at the top of your lungs. Remind me to put you in gymnastics in a few years.

You make us laugh. You can pull yourself up to anything, including a window, stoop down to pick up a toy, or sharp object and stand back up to hit the window over and over again. You love making noise, you love exercising, and I have debated tying your legs together to stop you from walking because a few of your brother's therapists have noted crawling is an important step for you. You seem only interested in taking real steps. But you are not old enough to have sense enough to not die while performing acts of physical prowess. Today in a three minute time span you knocked your head five times. I am not interested in spending any more time in hospitals young man, so please, stop trying to give yourself a subdural hematoma.

Our favorite thing you do is push down your crib bumper in the morning and peek through the bars saying over and over "Dada dada dada." When that doesn't work you sing. Or try "mama mama mama." Your sweet brown hands on the bars and your face pressed against the wood your curls frizzy and flying is the nicest way to wake up. We love having you in our room and know you like waking up and being able to see us there. You can stay as long as you want.

Thank you for letting us love you. Thank you for being such a chill baby. Thank you for getting better at letting me know when you need to be held. Keep doing it.

Love,
Mama

THE GAMBLE

Brady is now gestationally 40 weeks and 2 days. Past my due date. Next week is his three month birthday. It is hard to believe he will have spent the first three + months of his life in institutionalized care. It's hard to believe we've had a child in the hospital this long. He doesn't sit perched on my shoulder while we sing songs before bed. At dinner time, I look around and imagine where would Johnny be if he were home? Maybe sleeping on my lap while I eat, or in the bouncy chair on the floor by my toes. He doesn't know what our home smells like, or sounds like, or his siblings voices.

To be honest, his first months in this world are seeming eerily similar to those his older brother Tsega had. Obviously health wise he is in better hands, and he is never hungry. But like Tsega, he has a constantly rotating group of caretakers who watch out for him, but there are more babies than there are arms. Sometimes he lays there alone, without a mommy, or a friend. The way he is bottle fed is all utility. Get the food in, not about closeness and bonding. I can't be there as much as I want to. I never thought in a million years the same fears I have about attachment for my adopted child apply in equal force to to my homegrown child.

I think it's ironic we spent months becoming educated as to the vast array of problems children face when they live in an orphanage setting. Developmental, physical, emotional, psychological, neurological, you name the area, being without proper care and a loving family it takes a hit. And all the education we received on how to support or nurture those areas of delay apply to Johnny. It seems far more than his older brother.

In fact, aside from some attachment work that will probably be ongoing for years and years, Tsega is developmentally on target or ahead of where the other homegrowns were at his age. He is brilliant. He is strong. He is literally trying to walk and climb at nine months. And it's not that there was a mistake about his age. In fact, if there was any errors made, it was in the reverse direction. We haven't had him evaluated yet by the wonderful folks at Early Intervention (my favorite people on the planet) but I would be shocked if he qualified.

Brady, however, already qualifies for developmental and occupational therapy, not to mention that if he doesn't shape up and ship out with the eating thing soon, he could come home still needing tube feedings. The little turkey is just taking his time, so now the docs are trying to figure out how to get him home safely to finish up the rest of his maturation. On a side note: with all this push to get Brady home, I am starting to think they've noticed me showing up in the same shirt three days in a row a few too many times and they realize how badly my personal hygeine has plummeted with the current situation.

Brady is a little fragile. He is gonna need some work. You never know what difficulties your child will face in life. You never know if you are equipped to handle it. And if you're not, you better get equipped as quickly and calmly as possible. Adopted or homegrown, you just never know what you're gonna get. I cannot say how grateful I am for the hours and hours of classes we took to bring Tsega home. Because even if he doesn't ever need us to know that stuff, Brady sure does right now.

Having children is a huge, scary gamble. The magnificent thing about parenting is that no matter what the cards have in store me, I win.

HABESHAS UNITE

We can't get enough of together time with adoptive family friends. But can we get a picture of all the littles looking?





maybe we'll have better luck with the big kids...



or the moms...


well, at least we got together...

Let's do it again soon, girls.

THE FEEDING OF A PREEMIE

stretch...grunt...eyelids flutter hinting at the promise of wakefulness to come
head flops to the side, eyelids close. slight snoring.
c'mon Brady. wake up. time to eat.
look at his neck, there are three of them laughs nurse Karen
Brady, you naughty, you want to be in here 'til you get married? quips nurse Bella
maybe he will be the first kindergartner in the NICU i say
bottle prepped, pats, back rubs, eye lids open and shut again, hating the lamp.
Karen flips the switch to Off. that's better.

little boy, perched on my lap, neck, head, back supported in my left hand, bottle in the right.
the fourth kind of nipple we've tried today. fourth time's the charm?
you are the most handsome baby in the world, yes you are.
i pop in the bottle, his tongue curls around it, still not sure he's up for the task.
tiny fists clenched lay peacefully by his sides, he stares at me as if to say
do I have to, Mama? it's so much easier to just hug.
yes, Brady. please eat. we want you to come home.
he doesn't have to suck hard, the milk pours down his throat. he has a hard time keeping up.
he pants like a dog on a hot summer day.
suck. suck. pause. swallow. pause. suck. suck. milk oozes down his chest.
his brow furrows.

the quote oft used in my family comes to mind
i don't like work, it makes me tired
yes Brady, i know it is so hard to be a baby. what with all the sleeping and pooping and grunting. he's doing alright for a few moments. starting then stopping. working hard to breathe.
he's trying. he's done worse.
he's done better though.
he starts to fade. he hasn't made it through a quarter of his feeding.
Brady, stay awake.
i rub his cheek. again. nothing. twist the nipple in his mouth a bit, eyes are closing more.
i tickle his feet. suck. suck. swallow.
i look at the clock. has it only been five minutes?
i am sweating.

Karen, he is being a punk again
Bella pops her head in Brady's nook. he is smart. he knows here he has lots of babysitters and friends. he likes to socialize. if he goes home, only one set of arms. he is dragging this out.
Yes, says Karen, he is the oldest baby here. He's the mayor of the nursery.
pat pat pat the back. eyes fly open in surprise from the pounding.
burp!
try again. bottle in, rub the feet. squeeze his palm.
smell his hair
kiss his cheek.
i whisper sweet boy, if you drink your bottle you can have a puppy.
it's a lie, but it's for a good cause.
suck. suck. panting. a few more swallows. slow and steady wins the race.

eat, baby. live. why do parents have to beg their children to live? every fight over one more bite - or swallow- is a plea for them to go on existing.
the gulps are spaced far apart now. more snoozing than sucking.
then nothing.
i try everything.
he knew i was bluffing about the puppy.
he is tired.
he cannot be brought back to the land of the living.
it's been fourteen minutes.
he took 28mls out of 80. not impressive.
it's ok, Brady. Mama loves you. you did a good job. come snuggle.
hook up the rest of the milk to his tube.
he sleeps in my arms as the rest of the feeding goes through his nose, down his throat.

it's quiet.
the other parents have all left.
the nurses chat and laugh at the nurses station.
a few alarms go off as babies have apnea episodes or their sat levels drop.
Brady snores lightly and i bury my nose in his hair.
the impossibly good new baby smell fills my head and i almost fall asleep too.

my sleepy, unmotivated, enormous 7lb 6oz preemie in his milk coma

they told me it would be a few steps forward, a few back. this week was back. it was the pits.
but we will get there.

HE KNOWS THEIR PURPOSE

By "he" I mean my two year old son. And by "their" I mean breasts. Now that I've offended almost everyone who just came to this post let me try to explain.

To do so I have to go back almost two years ago. Cookie Monster was seven months old and we were at a casual New Year's Day party; ours was the youngest family in attendance. Most of the parents in the crowd were moving towards the empty nest phase of life. I found myself in a quiet corner sitting at a table with several lovely women, all mothers older than myself.

I chose a spot hugging the wall and unsnapped my nursing bra and threw my little one on to eat.
The women at the table chatted and reminisced about their days of nursing babies, and funny stories surfaced. Giggles erupted when one woman talked about taking her baby to aerobics classes and feeding him while doing leg lifts on her side.

Then another woman spoke up. She gave me a steely, determined look and said "I think breastfeeding in front of other people is disgusting. It always bothers me. I don't think I should have to be subjected to that."

I was shocked. Now, I know many people feel this way, but the surprise was that this came from a mother of five who breastfed all of them. Everyone sat there stunned into momentary silence, they all knew each other, had raised their kids together. Finally someone piped up. "I never knew that about you." She added "I never even breastfed my baby in front of my other kids."

Now, I definitely understand being modest. I understand being uncomfortable nursing in front of others and wanting privacy. I also understand not wanting to be flashed some stranger's nipple in public. What I don't get is how on earth she managed to nurse her babies and hide it from all the other people in her house. Babies nurse a lot. In the beginning of their lives every two or three hours and they take their sweet time to do it, too. I don't even know how her house didn't burn down while she was tucked away in another room while other little people might have needed her attention. I for one, don't like that nursing a baby can be a very lonely thing. I hate feeling isolated. I don't like that in many situations it feels like others would be more comfortable if I left to go feed my child. Where? They don't care, a dirty bathroom, a closet, on the floor outside, as long as they don't have to be near it.

At the time, I couldn't fathom why she would isolate herself on purpose, even from her other children while she fed her babies.

What I also didn't understand is why she thought it was disgusting or something one was "subjected to." Her choice of words still ring in my ears. At the time I felt attacked. I felt she was telling me I was disgusting and asked me to leave, which I did, in tears, immediately.

I think about this exchange occasionally. Each time the memory comes back I have a different take on it. I am more sympathetic to her now. Though I don't understand exactly how or why she felt the way she did, I do think because of her strong feelings she missed an incredible teaching opportunity as a mother. This is where it comes back to my son.

See, the woman in question had five boys. My guess is that part of her reasoning for choosing to not breastfeed around them was because she felt it was not appropriate for her other sons to see any part of her breast exposed. Perhaps she thought she was sparing them from some kind of inappropriate introduction to female anatomy.

Heck, she might have even felt tense at the party that one of her boys would walk around a corner and discern what I was doing since she'd worked so hard to protect them from this kind of thing.

And I kinda don't agree with it. See, about 300 times a day several times a day, I need to bust out a breast pump to get milk for my two babies. And when I sit down, my sweet two year old boy says without fail "Mama pump milk for Brady? Tsega? Food?" He often sits next to me and plays with my hair or drives his cars over me while I pump. In fact, if it's been a few hours since my last session, randomly he will ask "Mama, pump?" He knows it's time to get cracking before I even plug it in.

He knows what I am doing. He knows the milk comes out. He knows it is for his brothers. When he first met Brady a few weeks ago, and he watched him try to breastfeed he wasn't weirded out. He wasn't disgusted. He wasn't obsessed with my body. He just cheered him on "Eat Brady, eat!"

Cookie is young. He might not always remember this. But I am proud to raise a boy who by watching his mother feed her babies with that part of her body, hopefully will have a less sexualized concept of women and their breasts. He hopefully will honor the ability women have within them to feed another person. Maybe he will know that nursing a baby isn't something to hide or be ashamed of, but respected.

I do think modesty is an important value. I don't think we should ever nurse our kids in a place or situation for the sake of shocking others. But it is my hope that my example to my son will be a good one in this. I am proud that at least for now, he knows their purpose.

CLOSE TO HOME

"Ethiopiate" is a term coined in Bradt Travel Guide to Ethiopia to describe the best reason to visit Ethiopia; it means to just enjoying the people and the Ethiopianess. Lucy's Ethiopian Cafe opened just a few months ago and is a happy spot on Mass Ave on the corner of Huntington in Boston and gave us the much needed opportunity to Ethiopiate.

Tsega happily devoured his first injera, alecha and gommen wot. I decided to hold off on the berbere for now. It's ultra spicy, I figure we can built to that. I don't know why, but I was so happy he liked it.

Aunt Molly and Samantha dig in as well.

Here is the owner/manager/cook. Handsome and kind, Tsega warmed up to him instantly. He kept us company when he wasn't busy with other customers. In fact, while we stuffed our faces, Tsega decided to go back to the kitchen with him to help prepare the food. He also corrected me gently on how I was pronouncing his name. I am so happy to have it right, now.

The above shot is my favorite. First of all, I could not convince Cookie to eat the alecha (yellow mild split peas of goodness) or the gommen (sauted collard greens), no, he wanted the spicy messir wot. I was so proud of my kiddos for trying new foods and feeling so comfortable in a place where the food was out of the norm for them. They LOVED eating with their hands and ate enough injera to feed an army. And they had so much fun practicing Amharic with their new friends. Samantha has the gift of gab in any language apparently.

Secondly, the family in the background passing around Tsega with the manager of the cafe befriended us as well. We spoke about Addis, about travel in Ethiopia, and about how to stay connected to the Habesha community in Boston. They invited our family to join them at their Ethiopian Orthodox church any Sunday, and we exchanged phone numbers and email addresses. (ooh, and their 14 year old daughter babysits!)

But then they went beyond general friendly conversation: they paid for our meal before they left. I was so humbled by this sweet gesture, I repeated ameseginalew over and over with misty eyes, because what else could I say? The father, Alehou said "Think of it as our way to congratulate you on your baby. Please call us."

I am blown away. I am honored. I want to be that spontaneously generous and kind. They did not need to do that. They didn't need to invite the Americans to come to their church and be their guests. They didn't need to take an interest in our family. They certainly didn't need to cover our bill. I have been taught.

Next time you Bostonians need a yummy salad, a cup of coffee, or want to be bold and get some Ethiopian flavor in your life, go to Lucy's. For Tsega, and our whole family it felt close to home.