Million Dollar Babies

I just opened the bills for Bobby and Maya. One million dollars. No joke.

It's funny this happened, since it is on the cusp of a commenter asking about our insurance coverage. The short of it is that my husband's employer offers bang up coverage. It is the best we could hope for. Bobby and Maya's conception via IUI (including medications) cost us a mere $400 in co-pays, which I know is insanely low for many trying to figure out how to cover fertility treatments. Out of pocket, we've spent no more than $2500, which is the deductible for the year. My OB care, hospital stay, and the NICU have all been covered. (Well, we havent gotten the insurance statement from the NICU stay yet, since we've only just received the hospital statement, but our insurance is due to pay it).

I honestly dont know what we would do without our insurance. Peter makes a comfortable living but what makes it better are his benefits. We will never be rich people and that is okay, but I feel like we can make sure our children are healthy without breaking the bank. Which is also to say that we were able to get pregnant with them and bring them safely home.

Thank you BC/BS. I know you must hate us, but we are grateful. And, actually, it isnt BC/BS I should really thank. It is Peter's company, which will remain nameless, who offers the coverage and sets the stipulations (BC/BS just administers it). Back when we'd first gotten pregnant with Nicholas and Sophia and were looking into a traditional midwife and homebirth, we found out they would cover it via reimbursement (since our midwife doesnt take insurance). I'd never heard of such a thing being covered.

The reason we even pursued ART over adoption was money. We didnt have the $5000 minimum we needed to pursue adoption, but our insurance would cover a reproductive endocrinologist completely. Hence, our trip to Dr Lee.

I realize how incredibly lucky we are. I hope this answers the questions I received; please let me know if not and I'll try to address the situation better!

Advent

The mention of Advent always stirs thoughts of waiting. . .

waiting for Christmas.

We Theologians always speak of reflecting on the three ways of Christ's coming: in history in Bethlehem,

in the daily events of our lives, and the second coming in the future.

I've been thinking that we've got it all wrong. We need not wait for God. God is always present, always with us. That's what the name Emmanuel means: God-with-us. And, that's the primary truth we hear in the Scriptures. God created us, and calls us into relationship. God is indeed present with us, and especially in the person of Jesus the Christ.

No, this Advent, I've come to see that it's GOD who waits for US. . .

. . .waits for us to notice that we are indeed created by God.

We are born with unique gifts and qualities

as well as deficiencies and lack of qualities.
God only sees our goodness, and waits for us to notice too.

. . .waits for us to notice the myriad ways

in which God is with us, always.
We know the Creator in the beauty and amazing capacities of creation, both earth and human. We know the Creator when we experience love. We know the Creator when we can not explain or understand mystery.

. . .waits for us to notice when we observe people acting in the image of God: in covenant with one another, both those known and unknown, both those alike and those very different.

. . .waits for us to notice the emptiness in our hearts

that can only be filled by God's own Self.

. . .in the season of Advent, as Christmas approaches, God waits for us to notice the wonder and innocence of little children. How God must long for us grownups to be more like them, without guile.

It is true that in Advent we wait; but really, it is God who waits for us.

May we savor and revel in that reality.

Sallie Latkovich, CSJ

(The above reflection by Sallie Latkovich is the opening to "Winter's Wisdom," the annual Advent booklet from Ministry of the Arts, featuring Scripture readings and reflections for each day of the season.)

Catching Up

It's been a while since I've been able to sit and formulate what I want to say, and I cant even say that I am doing it right now. But it's the closest I've been in a while. And this is happening while I sit cross-legged in bed, with Maya in the fold of my legs. Both babies have been fed and changed but we are still showerless and havent even started the day. And it's almost 11am. But such is life...

Forgive me if this post makes no sense or has no linear rhyme or reason.... I'm trying to catch up on things I've missed writing about.

Maya decided last night that she was hungry. Really hungry. So hungry that she needed to eat constantly. From 11pm to 4am. And then, for good measure, at 6am. And I dont mean breastfeeding. I mean from a bottle. She took all the breastmilk that was pumped and then started on formula. I fed her freshly pumped breastmilk again an hour ago; we'll see how long that holds her over! Hungry girl! We may have a growth spurt going on here! (Bobby, cute as always, will eat whenever you put food in front of him. Hungry boy!)

Speaking of the mister, little Bobby has a nasty butt rash. (By the way, I started this post at 10:37... it is now 12:49 and I am able to come back to it. Where does the time go???) Anyway, butt rash... It started a few days after he came home. The pediatrician says that he, sadly, inherited my super sensitive skin and that we should get used to things like this with him. The rash is on the inside of his cheeks so it is very painful when he has gas or has to poop. (Yep, I just used the word "poop" in a post...) She recommended something called "Triple Paste" which I have affectionately named "Butt Paste". As of now, the rash is still there, but the paste has seemed to make him a little more comfortable.

(Time check? It's now 6:14 in the evening... I'm not making this up. Who would have thought it would take that long to write a post? Welcome to my new world...)

In the interest of full disclosure, I have to admit: the twins got their first vaccine. I've posted previously that we picked the vaccines we were comfortable with and the ones we werent. As you may remember, we arent pro multiple shots at once. I'm not a huge fan of bundled shots either, although Peter is more okay with them. A lot of it depends on the fillers; if the babies get less of those via a bundle, then that is better than spacing out shots where they get more fillers. But I digress... The received Pentacel, which is a combo shot of DPT, HIB, and Polio. As you may remember, we had decided to give the kids DPT because of the fatal risk of pertussis, however, we had opted out of HIB and Polio. So why did we give them Pentacel? Our pediatrician is very pro parent knowledge and we discussed our issue with the HIB vaccine. She let us know that there has been an outbreak in our area, which played into our decision reversal. One of the reasons we had opted out is because it wasnt prolific in our area. But since this is an influenza that can lead to meningitis, which can be fatal, we decided not to risk it. We still wouldnt do Polio as a single shot, but the fillers in Pentacel were less than the DPT and HIB separately (we'd initially planned to do the two shots by themselves). We've also decided to give them Prevnar, which is for pneumonia. The decision to give this was primarily due to Maya; part of her lungs didnt completely inflate, which puts her at a much higher risk of pneumonia. (Preemies are at a higher risk anyway, but her risk is at the top of the chart). The situation will work itself out over time, but since they were born going into winter, we've looked into the pros and cons and have decided the benefits outweigh the risks. Of course, they will get this shot by itself.

They were troopers. When the needle went in, they both let out a quick cry, but then it was over. Less than 30 seconds of fussiness. Part of me thought "oh, my brave babies" but the other thought was "this is what happens when you spend the first 9 weeks of your life in the NICU". The poking, the prodding... They probably are pretty desensitized to the needle pricks. The nurse said that the kids were the best she's had with shots. I guess that is both a compliment and a bit sad.

***

Maya is starting to crawl. I know. That sounds nuts to even write. When she's being held on your chest, she will grab your shirt and start working her way up until her head is underneath your chin. Peter said it probably reminds her of being tiny, when we would reach in the isolette and put our hands on her head. When she is on one side of the pack-n-play and Bobby is on the other, she will make her way over to him. Giving her tummy time, she can get herself from one side to another. And she is learning to roll over. At this point, she can get about 2/3 of the way there. It's really insane. She's 9w2d old today (adjusted age is negative 2 weeks since their 40 week due date was 12/5); the earliest time a full termer crawls is usually about 24 weeks and rolling over from back to stomach is about 20 weeks. Given, she isnt crawling across the floor or rolling all the way over; but she is on her way and it seems so early. It seems like yesterday I could hold her in the palm of my hand. Now she is starting to fill out (she's still my chunky monkey no doubt!) and is getting more mobile. Bobby isnt doing so much crawling practice and he doesnt do much rolling over practice either (I think his head is probably too heavy!) but he is holding his head up and lifting his body up when he's being held and holding it on his own. A full term baby holds his head up for more than just a shaky little bit around 12 weeks. Again, it's crazy. As he gets bigger and moves out of his newborn wear into (gulp) his 0-3 month wear, it really is hitting me that they grow up so fast. So very fast.

***

On a funny note, I not only have "Milk Gibson" but now I have "Breast Michaels" as well (for those who dont get the reference, Bret Michaels is/was the lead singer of Poison, an 80s band). Sarah coined this phrase to name my new breast pump that my girlfriend (and twin godmother) Meg gave me. But perhaps her funniest new phrase is another nickname for Maya that Peter really hates (and he thought Chunky Monkey was bad!). We were joking about Maya having strawberry blonde hair and her being the "milk man's baby" (we also jokingly call Peter the milk man since he gives breastmilk in a bottle to the babies) when Sarah busts out with "She must be Daniel Craig's baby since you had so many dreams about him", to which I joked that, in my spare time from bedrest, I escaped to NYC when he was there and somehow ended up with one Peter baby and one DC baby. So, she coined the name, "Craiglette" for Maya. Boy, how I laughed. Peter- not so much. So, for the record, they are both Peter's. I swear. Pregnancy dreams aside... :)

***

Pain. It's something that I both expected and didnt expect. I knew it was going to hurt. I mean, how could it not. You cant have babies at home, watching them grow, and not be reminded of what you've lost after you'd lost a child. You simply cant. And it hurts. It hurts in a place that is so private you cant even express it to others. Sometimes I find myself just watching them in awe. They are here. In our house. In their bed. We bathe them and change them and feed them and hold them. They are here and our worlds have changed more than we ever could have imagined.

I have said it before: I love all my children. If the only way that I could have all of them in my life is to have said hello and goodbye to some of them way too early, then that is the price I pay to love them all. I cant imagine not having had each of those children touch my life. And I cannot imagine life now without Bobby and Maya. And for this, I feel both guilty and heartbroken. I know that had Nicholas and Sophia lived, there would have been no Alexander. Not because wouldnt have had another child, but because we wouldnt have conceived Alex in August. Which means that next baby wouldnt have been Alex. Having Nick and Sophie early gave us the gift of Alexander. Had he been born, even at 28 weeks, there would have been no Bobby and Maya. Again, not because we wouldnt have had another baby, but because we wouldnt have conceived babies in March. So that next child or children wouldnt have been Bobby and Maya. And how could I wish for a life without them? I couldnt. And that hurts. So damn much. It drives a huge lump in my throat and causes me to stop breathing. Because it is a choice. Do I long for a life with Nicholas and Sophia and Alexander when that means a life without Bobby and Maya? How can I? How can I not?

Many of these feelings are coming up as we discuss having another child. (Not today! Please, I'm not insane!) We had always planned to try to expand our family with more biological children as well as adopted children. We assumed we'd wait 2 years or so and then try again. That would put me at 32-ish when we started. Still young but with my biological clock ticking of course. (But then, dont we all feel that way?) But I'm not so sure. Not about the 2 years. Or even 5 years. My age doesnt scare me, although the longer we would wait, the harder getting pregnant could be. It's everything else.

We have been monumentally lucky. To have 27+ weekers- who really are 25+ gestational weeks- do so well and have so few interventions is almost unheard of. Babies at 28 weeks routinely pass away from hardships. We got the best hand in the deck of prematurity that we were given. A good friend of mine made in the NICU had twins at 27w4d- 1 day before ours in the pregnancy timeline- who are struggling. That is the norm. Bobby and Maya arent. The chance that I will give birth prematurely again? Practically 100%. The need for a cerclage? 100%. Bedrest? 100%. Hospital bedrest? Probable. Is that fair to Bobby and Maya? To Peter? To whatever new child or children chose us to be their parents? I cant say yes.

Oh, Michele, it's too early to even be thinking of this. Give yourself a few years and then think about it. I know. I know. I could wait to think about it. But that just isnt the way I roll. I need to think about it now. Even though it wouldnt be for a while. And my thoughts lead me to think that I just cant do it. I dont know that I could do another C-section with having kids to take care of home. I couldnt have severe bedrest and raise toddlers. I couldnt spend months in the hospital and have someone else raise my children. And I couldnt put a child at risk, which is what I feel another pregnancy would do.

If God gives us another biological child, we will welcome that child with open arms and do whatever it takes to get them here full term and safely. But I dont think we will explore reproductive technologies to help God out. We wont use birth control because it doesnt fall into our beliefs, nor will we use NFP because, with PCOS, it's not really a workable method. But I dont think we will put our insurance to work with Dr Lee. I have loved being pregnant. I cant compare feeling a child grow inside, moving, curling up, kicking. I cant find words to express seeing them moments after they came from my body.

But I also cant express the pain of watching my child stuck with needles or struggling to breathe. The fear of knowing that my children would come into this world 3 months early. Bobby and Maya will turn 3 months old 5 days after their EDD. And that was as pregnant as I have ever been. I cant put another child through that on purpose. And to me, getting pregnant, knowing that even with a TVC, I might not be able to go 40 weeks... It's too much of a risk. And I'm not a gambler. I think I will stop while I am ahead.

We've wanted to adopt since we got married. Money held us up. We finally have the start of an adoption fund and Peter's employer recently made a change to their adoption reimbursement policy which allows for $10,000 in reimbursement. I can only imagine that seeing your child for the first time in the adoption photo is like seeing your child on an ultrasound for the first time... That waiting to meet them is like waiting for delivery... That touching them for the first time, kissing them, holding them- that those feelings give you the same lump in your throat and tears in your eyes. Maybe even more. Because you know what they've gone through to get to this point too.

We want a large family. I have no doubts that we will have it. And hopefully we wont spend more time in a NICU to see it realized...

***

So, all over the place tonight. And I still have more in my head. But that is for another night... (oh and time check: it's 7:20pm)

Tree Trimming 2009

As is our day-after-Thanksgiving tradition (a tradition that I brought from my family), we trimmed our Christmas tree. Last year, we were days out from Alexander's birthday and it was all either of us could do to breathe. But we trimmed the tree because it was his first Christmas and it was Nicholas and Sophia's first Christmas on the "outside". It was hard but we were glad we did it. This year, our tree trimming came a little over a week after having both Bobby and Maya home. They slept through most of the festivities. Peter's parents, my dad, and Sarah joined in on all the fun and our house is now sufficiently Christmased. I'll post more photos on the picture site (once I take a few more... Part of the house wasnt finished by last night so I only have photos of the tree on my computer right now).

Happy Thanksgiving

From our home to yours... Happy Thanksgiving

***

I am thankful for the big things: time with all my children and my husband, family who support us 100%, friends who are as family, strangers who shared their lives with us in prayer, kind well wishers who made us meals and offered assistance, nurses who made our lives easier, doctors who gave their all to bring Bobby & Maya safely into this world and made it possible for them to have the best possible start, even when the deck was stacked against them.

I am thankful to be able to have loved ones in our home to share a meal. To be able to drop $200 on groceries, with a fair portion of that going to one meal. To not worry where my heat will come from on this crisp fall day. To go into my fridge and hem and haw over what to snack on as my meal for 20 (but serving not even half that) cooks on my fairly new stove. To search through my closet for what I want to wear not what I have to wear. To be able to relax and know my children are safe and secure.

I am thankful to be able to drink clean water and have fresh air to breathe. To be able to sit on my couch in front of an NFL game on my flat screen as I type on my laptop and utilize my wi-fi connection. To be able to talk on the phone to family and friends from afar.

I am thankful for a husband who loves me (even the not-so-great parts). Who takes my "Irish temper" in stride. Who lets me pout it out when I am pissed off. Who holds me when I dont want to be held and lets me cry when I am afraid I will appear weak. Who has shown me the face of God in his own.

I am thankful for a mother who showed me what it is like to be a mother. For a mother-in-law who showed me that you can embrace a daughter in an instant because your son loves her. For a father who gave me the confidence to fight uphill for what I want. For a stepfather who gave me a sense of self when I was still learning who I was- and who still supports me in being me. For a father-in-law who lets me know that I can always say what is on my mind and not worry about what others think.

I am thankful to be a sister. To have a brother that I watched grow up and who now has a son of his own. To have sisters that I hope to one day know better. To have a brother that I know of but who doesnt know of me. To have friends who are as siblings to me.

I am thankful that I can stare at pictures of Nicholas, Sophia, and Alexander. That I can remember them by smelling their blankets. That I can run my fingers over their footprints. That I am their mother and was able to be there from the moment they entered this world through the moment they left it and beyond.

I am thankful that I can hold Bobby and Maya in my own home. That I dont have to navigate wires or listen to monitors blare or ask permission to cuddle my children. That Bobby weighs over 8 pounds and Maya over 6 pounds. That they are happy children who know they are loved unconditionally by so many.

I am thankful that Bobby takes his bottle without choking (for the most part). That he will still nurse for comfort if not for nutrition.

I am thankful that Maya has found a new love of nursing and has graced me with her presence at my breast for every meal, except one bottle last night and one this morning, since about 8pm yesterday. That she looks up at me with her gorgeous blue eyes and reaches her hands around my breasts as if to say "mine".

I am thankful for each and every one of you. Those I know in real life and those who I dont even know read this blog. For each and every thought you have paid me in my grief and my happiness. For carrying my sorrows and my joys as your own. For every prayer that you thought or uttered for all of our children. And for us. For sharing your own paths with me and allowing me the privileged of your friendship.

Happy Thanksgiving, whether you are in this country or abroad. May you have all the things you are thankful for near you today, and may you be surrounded by love and peace.

***

The Lord bless you and keep you. The Lord lift His countenance upon you. And give you peace. The Lord make his face to shine upon you. And be gracious unto you. Amen.

(A post about what is going on in our neck of the woods is forthcoming. There are quite a number of updates...)

Noah...

http://www.clickondetroit.com/news/21522646/detail.html

Noah passed away peacefully with his parents by his side. If you sent a card to this special little boy, thank you for making his wish come true. He will celebrate this Christmas in heaven, but I am sure that those cards will make his parents' Christmas a tad brighter in their grief.

Alexander's First Birthday

For the longest, we thought we'd go to Jim Thorpe, but instead, as the day went on, we felt like we were supposed to go to Bethlehem instead. It wasnt a warm day, so we opted to not take the kids out for a walk, but instead we took them to visit our RE and then we went into the downtown of the "Christmas City". We went into a few shops and just talked about things that reminded us of our cuddlebug. We ended the trip by going into the local brewery/restaurant and having a pint in honor of our little one. An oatmeal stout. I think he would have approved. :) We also had a brownie/ice cream dessert thing. It was a chocolate overload; I think he would have dug that also.

As is our tradition, we took their box with us and took a special photo in honor of this special day. For Alexander, we found a Christmas tree and took photos with the box there.

Quite a number of folks stopped us to ask about Bobby and Maya. It's funny; I guess I didnt think that, in a world where triplets and quads are becoming more and more popular, that twins would warrant such attention. Instead of seeing it as "Cool, people think our babies are cute," I must confess that I thought "Are you sick??? Have you been around ill people???" instead. Uh-oh, I'm crossing the border into crazy...

When we got home and put the little ones to bed (where they are now and currently are talking to each other up a storm), he took the opportunity for one other photo opportunity. I wish, more than anything, that our children could be together in life, but that isnt to be.

But they will always be together... Always...

Happy Birthday, Alexander.

Happy Birthday, Alexander

One year ago, you were in my arms. I was kissing your forehead and holding you close to me. And now... one year later... I am holding your book and kissing a photograph. And missing you. Terribly. My heart is heavy and cracked at the seams... My arms miss you and are aching to hold you. It is so hard to know that, no matter how severe the ache, it will never be filled. Not in this world.

People think that your broken heart can somehow be mended when you have another child. A child who lives. But they are wrong. They have never endured a loss that has no comparison. They have never suffered a break in their heart for which there is no mending.

A Mass was celebrated in your memory today. We missed it because we were feeding and changing and preparing for the visiting nurse who was coming t0 assess your baby brother and sister. Is this how it happens? Is this how life creeps in and slowly erodes the few moments we have left together?

My sweet cuddlebug, my Alexander. I love you so much. I ache with the desire to have you in my arms again.

We're taking your siblings to the mountains today in honor of your birthday. It's the place that we've both felt you telling us you wanted us to go for your special day. We may see it all through car windows, but we will go. And you will be there with us. And again tonight, when we bake birthday cake and have your birthday dinner. One year. You are one year old.

So short a time.

Yet, a lifetime.

Happy Birthday, Alexander. We love you more than words can say.

Thank You

Thank you for all of the support. As someone posted yesterday, WE MADE IT. This part of the race has ended and we are now on a new journey, as orphaned parents but as parents of living children too. We are home from the hospital and now settling into a life that we saw glimpses of 2 years ago.

2 living children but 8 babies

16 weeks of bedrest, 9 @ home & 7 @ hospital

almost 28 weeks of a high risk pregnancy

almost 9 weeks in the NICU

And now, a week at home with healthy, almost full-term-equivalent twins. After Mass this morning, our priest introduced them as miracles. Answered prayers. And they are. How awesome it must be to have prayed and prayed, and to see your answer in the flesh.

But for every prayer answered in joy, there is a prayer for which we dont understand the answer. I prayed for Nick & Sophie and for Alex. Yet those prayers were met with an answer that I still dont understand, that I will never understand. And even though it isnt meant for me to get, I will always wonder.

The babies were perfect at church. We went to the 7:30 because it is a smaller crowd and we sat at the front (to keep any sick people behind us). They slept through and didnt wake up until we came home.

Well, it's time to feed them so I have to run for now!

First Week @ Home

It really has been one week since our Bobby-boy came home. Wow. As I sit here typing, with his long body draped across my shoulder, I am in sheer awe and amazement. My son is home. I dont have to go to a NICU to visit him. I dont have to ask a nurse if I can pick him up. I can kiss his forehead and smell his scent, and there are no monitors beeping or wires to untangle. Today marks 3 days that our sweet Maya has been home. I look and see her laying, big open mouth smile, on Peter's chest, her hands intertwined in his chest hair, the light bouncing off her strawberry blonde hair, and, no joke, snoring, and I feel a lump in my chest. She is home. There arent CPAPs or steroid injections or withheld feeds. Just my Maya. My sweet little girl, who just opened her eyes and looked at me. And smiled.

Wow.

The visit with my mom and grandma went well. They adored the babies and the babies adored them. It was too short a time. They came Monday night and left Friday morning. I wish they could have stayed longer.

Life in the Haytko house is quite interesting. The babies take between 2oz and 4oz per feed, depending on who it is, and eat every 3-5 hours, depending on how much they eat. Last night, they slept for 5 hours. Maya tends to want to sleep over eat, Bobby wants to eat over sleep. Getting them to sleep in our arms is easy; putting them down... not so much. Not that we mind. Except when we would like to sleep too... Since we dont advocate sleeping with the babies in bed with us, this can be quite challenging. The cosleeper is a godsend; once we get them to sleep and lay them down, it is nice having them so close.

Nursing... Well... It's a dream that I've had to put aside. Bobby prefers the faster flow of the bottle and wont even attempt to direct breastfeed. Maya still will latch on and suck, but she prefers her bottle. She gets frustrated when she realizes that my breast wont flow faster no matter how hard she sucks. I'm trying to fall in love with the bottle as they have, but alas... To say that this isnt how we saw things play out is to tell you something you already know. I'm still pumping like crazy and trying to get my supply back. At this point, I am back to producing about a third to half of what they need. It's getting better but I'm only up to 3-4 ounces a pump. So, we've been making bottles with 1/2 breastmilk and 1/2 ready-to-use formula. I hate fooling with the powder, so ready-to-drink has won. I'm really hoping that pumping gets me back to full feeds so then we can get rid of formula all together. But, I just cant stress about it. If it happens it does. At this point, if it doesnt, it's just another dream that gets traded for reality. The only dream I can hold onto is the safety of Bobby and Maya. If I can have that, then the rest is just icing on the cake.

***

Wednesday night, our church held the annual Mass of Remembrance for those who have died in the last year. Alexander was remembered. If Maya was at the hospital, we'd decided that we wouldnt go because we'd be at the hospital, but if she were home, then we wanted to attempt to go if the weather was okay. So, on Wednesday night, the children made their first venture to church. About 3 dozen folks were being remembered, so it was a small crowd, and everyone respected our wishes that they not get close to the babies or not touch them. We wore them in our mae tai carriers, which worked out great. They slept through the service and Bobby didnt wake up until we were a few minutes from home and he was hungry. Afterwards, we celebrated Alex's birthday early with his grandparents and great grandmother. It was nice.

***

Tomorrow, we are going to attempt going to the 7:30am Mass. It is, by far, the fewest parishioners, and, if things dont work out with the babies, then we can slip out quickly. We plan on wearing them, since that played out so nicely on Wednesday. I keep handy hospital-grade hand sanitizer wipes. Just in case. Not that we are keen on touching, but just in case.

***

Monday is Alexander's 1 year birthday. We plan on taking a drive with the babies. And then, of course, Alex's special meals for the day. I miss him so much. I look to Bobby and Maya and see their brothers and sister in their faces, and it hurts. So deeply.

***

Well, my (free) time is over. Dinner for grow-ups needs to go in the oven.

Welcome Home, Maya!

On Wednesday at 2pm, Maya entered her home for the first time! She was 8w6d old (37w4d gestationally) and 5lb9oz. She was sound asleep and we had to actually wake her up to feed her! Bobby and she chatted happily until they fell to sleep. It was wonderful to finally have the two of them together.

Before we left the hospital, we visited APU and then my OB's office. It's kind of sad. Dr. B. missed their delivery and then he missed their visit because he was delivering! Poor guy. He just cant win! But they did get to see Dr. M., who delivered them.

And so here we are... Finally, at home... Together. Thank you, God.

November is Prematurity Awareness Month

40 weeks. It sounds like a lot of time. What could you do in 40 weeks? Most people probably take a vacation every 40 weeks or so, or at least hop a weekend getaway. You could get through 2 semester of college. Oh, yeah, you could gestate a baby.

Or not.

At one time, those 40 weeks werent just a recommendation, they were the standard. Babies born before 36 weeks were almost always lost. And then, with medical advancement, babies born at 34 weeks were savable. And then 32 weeks. 30 weeks. 28 weeks. 24 weeks. Now, we can save some babies- although very few- at as early as 21 weeks. Given, we have no idea how their lives will turn out, but literally "half baked" babies can be given some sort of chance with invasive and round the clock care. And if you two thirds of the way done, most people expect that your baby has a fighting chance.

Do you know what the average gestational time is now? 36 weeks and change, almost 37 weeks. 3 weeks shy of what we used to consider "full term" is now the norm, with scheduled c-sections and early inductions. While there are valid reasons for both these procedures, a parent's schedule isnt, in my opinion, in there... But I digress...

Babies born prior to 36 weeks are preemies. And we all know at least one. I was one, born around the 30 week mark. And, no joke, I went home from the hospital soon after I was born, with a nice case of jaundice and instructions to "put the baby in the window that gets the best sun". As to the rest of it, it was a crap shoot. I looked healthy so I went home. No feeding tubes. No breathing machine. Thank God. The same is true for J, who was a preemie born a few decades ago and is one of the twins' godmothers. She was a preemie who was sent home with the luck of the draw attitude that doctors had when preemies looked good. We hope your baby lives. Good luck.

But we also know the other babies. The ones who lived in NICUs for months. Bobby and Maya were lucky. Their NICU roller coaster went up and up and up with only minor downs. They had minimal treatments and were basically waiting to learn to eat on their own completely and grow. But I see babies every day who arent so lucky. Babies like Maya's boyfriend, an adorable 35 weeker who cant eat without vomiting. Or the 27 week twins of a new NICU friend, who cant stomach fortifier and arent gaining any weight and are the size of Maya at birth, even though they are 6+ weeks old now. (They were 1lb 5oz when they were born, so thankfully, they've put on a pound in those 6 weeks). Then there are the babies that were born recently and rushed to our NICU. 24 week twins whose parents stand vigil by their bedside as monitors go off and off and off, and doctors tell them, grimly, that the prognosis isnt great. That yes, we CAN save SOME 24 weekers but it all depends on what is going on... That, at some point, you have to make the choice of what is life saving and what is simply putting off death. That the first big decision you have to make as a parent is where to let your child have a life that is living or a life that holds no hope of ever really waking up.

And we cannot forget the babies who try so hard to make it in a world that just isnt ready for them. Babies like Georgina and Benjamin, born at the cusp of that horrible V word, viability... Babies that were so loved and tried for and hoped for... Babies for whom their mothers poured over the stories of other micropreemies who survived and thrived... Babies who died while their twin lived, a constant reminder of a life cut terribly short and forever put on hold.

The babies like Nicholas and Sophia and Alexander and George and Gregory and the countless others, born too early for medical assistance. Babies who took a breath or two, if a breath at all, their lives marked, at best, in nanoseconds- but who spent a blessed lifetime in the womb.

Who can we blame... Certainly when a mother engages is risky behavior like smoking or drinking or drugs, it is easy to point the finger and say "YOU did this to your baby". When a mother who is advised to take it easy does everything but, we may find it hard to find sympathy for her as we pray that her child doesnt suffer for her lack of parenting. But what about the other side of the coin? The mother who did everything to get those precious 40 weeks and failed? The mother who holds guilt like some people hold a live child? There is no one to blame, but that doesnt stop us from blaming ourselves.

We didnt ask to be those mothers. The ones who gave it their best only to feel that their best wasnt good enough. The ones who spent hours, days, weeks, or months on bedrest, praying that each day would be a day that passed them by and brought them one step closer to a full term delivery. The mothers that begged their doctors for an fFN test to predict whether or not their labors would occur in 2 weeks so that they could have some peace of mind or at least try to prepare themselves for the inevitable. The mothers who closed their eyes and took those 2 shots of steroids, in the hopes that they would be the miracle drug that would inflate their child's lungs and give them the hope of a breath outside the womb. We didnt ask to be the mothers that no other mother dreams to be, the object of sympathy. The woman in need of more support than she could have ever imagined and more prayers that she ever would have thought possible. The woman who holds a child in one hand and prays that their tiny, red-tinged baby will have not just a shot at life, but a shot at living.

We didnt ask for our babies to struggle every day of their early lives with needles and OG tubes or NG tubes and CPAPs or ventilators. Babies whose lives were watched round the clock. Whose medical care costs upwards of hundreds of thousands- and even a million- dollars.

What is worse is that we cant stop prematurity. We cant cure it as though it is a flu. Those of us who have done everything possible to prevent it and lost the battle know that for a fact. It is a plague. All we can do is watch for it and watch for it in others and hope beyond hope that our vigilance and our prayers can make the difference between losing a child and watching one grow to fruition, 40 weeks or not. We can educate ourselves and others. We can talk to our doctors about predictors, like the fFN, and why they may or may not work for us. We can insist on betamethasone injections, if a preterm birth seems inevitable. We can talk to our doctors about cesarean deliveries when our babies are tiny so that they can avoid the trauma of a vaginal birth and possibly a dangerous brain bleed. We can become advocate for ourselves and, more importantly, for our unborn and prematurely born babies. We can ask the hard questions that we dont want to know the answers to, and we can make the hard decisions that we pray no parent ever has to make.

We can and we must. Because if we dont, then no one else will.

This month, call your local NICU. Ask what YOU can do to make the life of a preemie parent easier. Maybe it is knit a hat (I cant tell you how deficient our NICU is on micropreemie hats). Maybe it is make a meal and bring out for a family sitting vigil at the bedside of their struggling baby. Maybe it is simply pray. But most NICUs have groups that support parents and they NEED support- not just from NICU parents but from all of us. It takes a village- be a part of that and know that you made a difference.

And talk. Talk about prematurity. Talk about it with your pregnant family and friends. Dont be afraid to be the "nut" that brings up the scenarios people dont want to think about. They need to know. They need to be empowered for advocacy, and to know that there is someone they can talk to if the shit hits the fan and they become that preemie parent. Talk. Talk. Talk.

It's the one thing we can do. The one thing we can all do.

Attack of the Grandmas!

I mean that in a sweet way of course. My mom and grandma arrived last night and their first stop was the hospital to see Maya, who was in Maya form, complete with a couple of "mean Maya" looks, which my Mamaw says is definitely my influence. (I couldnt possibly know what she is talking about... I was a perfectly innocent child!) They are enjoying their visit with the babies. We celebrated Sophia's 21 month birthday with her special dinner and then visited a little while Bobby took one of his few naps of the evening. We went to bed and thought that he would sleep better in the cosleeper. That's a big fat no. Since we still werent holding him, he still wasnt happy. I didnt sleep much. I handled the first feeding and Peter handled the second and third so that I could pump and not doing a feeding/pumping combo, but we were both so tired. I'm surprised I'm still awake. I took a nap this afternoon, but I am just wiped out. I'm pumping now or I'd be asleep! Mom is talking to Bobby (Peter and Mamaw are with Maya).

Mom went with me this morning for a visit with Maya and dont you know she stayed awake the entire time that Mom held her! She told her stories and just talked to her. It was so cute to see her (it's cute right now while she's talking to Bobby). It's amazing to see your mother holding your baby.

Maya had a wonderful day again today. And some NASTY diapers. OMG. Just downright NASTY! She thinks it is funny when we wrinkle our noses and make funny noises. And it is so adorable. So cute! She had her eye exam with her surgeon who said she looked GREAT and just what he'd hoped! We still have a few weeks to go to know how well it worked but she doesnt have to be seen for 2 weeks. Her carseat test is scheduled for tonight (please let that happen!) and they are saying tomorrow or Thursday for her homecoming!!! YAY!!!

Happy 21 Month Birthday, Sophia

I love you my sweet. Your great grandmother told us that she has thought of you all day today... We have too... We love you so much. Happy 21 month birthday.

Bobby's First Walk

It is unseasonably warm here today. Like 67 degrees warm. Definitely not what you think of when you think mid November. When we were being discharged, the nurses told us that, should days like this crop up, as long as we bundled the babies up, they could go for short walks. So, Bobby and I went for a brief walk around the neighborhood and I am posting this from outside! We've been out about 15 minutes, so I'm taking him in after this, but I thought I'd share how we spent a lovely part of our early afternoon.

Abuelita and Grandpa (Peter's parents) came for a short visit as Bobby was waking up for lunch. So they witnessed our little one pee on himself, get changed into his third onesie of the day, and have his bottle. It was a short visit, but a nice one. I know they were really excited to see him at home and they cant wait until Maya is home with him. Then, we went for our little walk. Isnt he cute in his carrier?

I love the mei tai. I had initially bought them because they were the only carrier I found that got great reviews for doubling for twins (you can either back/front them or put one of each side). But after using it today, it is worth its weight in gold! Bobby was fighting sleep, so I put the he and the carrier on (which was a breeze) and he was asleep in minutes. He was snug enough that I could use my hands (although I found myself keeping that one hand on him (more for me, I think... this still doesnt feel real...) Same thing for the walk. He felt very secure and was out like a light before I left the driveway. I just came inside and put him in the cradle. He didnt even stir when I moved him from the carrier. It is just so easy... A++!

I realized today that I didnt take his hospital bracelet off last night. My mother-in-law saw it when I was changing his diaper and I cut it off then. There's a part of me that thinks they are going to come and take him away. That I couldnt possibly be lucky enough to have him home. There are other fears... That something will happen to Maya... I've never gone this long without seeing her and it is killing me. Peter was there twice today but I havent seen her since 5pm last night. I've never gone this long without seeing her. Not one day. We wanted to wait for the maiden voyage with Bobby to be when both of us could be there, since we werent sure how he would handle sitting in the carrier, needing to eat, needing changed, etc. Peter is helping a friend move today, so we decided we'd wait and go when he gets back, rather than me going alone with Bobby. It is so hard. I've called and she is fine, but it is still heartbreaking to have her there.

Well, my little Chipmunk is stirring... (and it is so cute!)

Welcome Home, Bobby!

On Saturday at 6:30pm, Bobby entered his home for the first time! He was 8w2d old (37w gestationally) and 6lb10oz. He came home sleeping but didnt stay that way for long! We put him in the cradle we have downstairs and watched him sleep (and listened to him coo and make "preemie noises") for about an hour until he woke up and we did his diaper and fed him. 1am seemed to be his happy time. He was awake from 12:30am until 2:15am. Mind you, they sleep/eat for 20 hours a day. And he was awake for almost a 2 hour stretch! We ate, sang songs, danced, cuddled.... But no cigar. He wasnt going to sleep. Because the cosleeper wasnt set up, I stayed downstairs on the couch. Peter went back to the hospital for Maya's 2am and he's going back to visit her this morning. I'm taking Bobby for the afternoon and then I'll go back alone tonight.

***

In not-so-happy news, guess who has a case of mastitis... I mean, Universe: really??? You couldnt share your unlucky love with someone else??? Infertility, Miscarriage, Infant Loss, Preterm Birth... I couldnt just have Breastfeeding??? I mean, in the grand scheme of things, it is such a small thing to ask... I'm still pumping and I started breastfeeding-safe antibiotics, but at this point, instead of pumping 120ml at a pop, I'm lucky if I can get 45-50. They ran out of milk yesterday at the hospital and when we got there, Bobby had a bottle of (gasp) formula. I was devastated (and yes, I understand that he was hungry and it was nourishing, I get that, but this was my last holdout on "normalcy" and was something both Peter and I desperately wanted to do exclusively). We decided that until the mastitis clears up and my milk can flow again that we'll give the majority of the milk to Maya since she is still in the hospital. Which means Bobby drank quite a bit of formula yesterday and today.

And it stinks! Literally! I guess I never really noticed before but after having pumped for so long, I mistakenly thought that formula probably smelled like breast milk. (I know... dumb me on that one...) I'm so used to basking in the smell of breastfed baby that it really shocked me when Bobby burped and it was NOT what I was expecting. Hopefully, we will be able to return to breast milk only soon. The antibiotics end in 10 days and things should be back to normal (or so I hope).

Maya is taking her full bottles and then some! Peter says I cant refer to her as "Chunky Monkey" on the blog because he hates it (I think it is cute!) but suffice it to say she is living up to my name! Her minimum is 50 and she's been taking between 60 and 65! Making up for lost time! She sounds a lot better. Hopefully, this weekend will go by smoothly and Monday will not be a repeat of last week. Assuming she is good on Monday and Tuesday AND she is still taking her bottles, we are hoping to see her home next week!! YAY!! She was moved back into the Transitional Nursery yesterday afternoon, which feels like another good sign.

Well, I have to finish up pumping so that Peter can get on the way to the hospital.

Bobby's home!!!

NICU Day 63

Maya is off CPAP! She went to cannula (room air) around 2pm and into a crib a little before that. You would think that this would have made her happy but she was feisty all afternoon. She would cry like a banshee if I put her down and it was hard trying to comfort her and handle Bobby getting hungry a half hour before usual. If we were home and there werent cords everywhere, I think it would be a heck of a lot easier. Her cords wouldnt reach to him! So, here I am, walking her back and forth, and trying to inch a tad closer so that I can hook his crib with my foot and pull him closer. I must have been a sight to see... But hey, whatever works! And it all worked out. Eventually, she was calm enough to hang out in a swing for a little while, which is where her daddy found her, sweet and innocent looking. He didnt believe the nurse or I when we told him to leave her be until SHE decided to wake up!

She took 2 bottles today; the first one calmed her down A LOT. The nurse and I agree that, although the tube feedings filled her tummy, they didnt satiate her desire/need to eat. She was so much happier after that first bottle. I would have breastfed her, but I had just pumped. But I held her at the breast as she ate, which is almost as nice. And she was happy. Which means I was happy. There is nothing better than a happy baby.

She also exploded into several diapers, leading us to think she has a tummy ache resulting from restarting her feeds. Her movements were not the "gourmet mustard" look of breastfed babies; they were darker and more green in color. The nurse checked for any issues and they came back clear, so it looks like just a sick tummy. Thank God. We dont need NEC or anything else cropping up! So, a sore throat and a sick tummy make for a very unhappy Maya! And a strong Maya! She was quite the girl to contend with today. She pulled her cannula off several times and yanked her OG tube out. When her nurse replaced it with an NG, she taped that and the cannula down very well. Maya has a lot of tape, but hopefully this will prevent her from yanking things off at inopportune times. She also decided to pull her leads off. 3 times. I'm not making this up. She's pissed off at the world right now.

It's great to have my sweet girl back. :)

They got their Synagis shots today. For those who dont know, this is a RSV antibody injection that is given monthly. It isnt a vaccine, rather it is an injection of antibodies to boost up the baby's immune system. This is why it isnt a one-shot deal and must be repeated every 28-30 days. The twins were due to get it right before discharge. To keep them on the same schedule, Maya had hers with Bobby's. He got his while I was pumping and apparently he gave a little cry and then went back to his business. Maya cried and cried. It was just insult to injury at that point. I just held her and felt like the biggest bitch in the world. Not only had she had to go through the whole breathing thing today but then the new feeding tube and the eye drops and then a shot. She was miserable. But it's all over now. And she is resting quietly on Daddy's chest and feeling much, much better. And she has her favorite nurse with her tonight. So life is good.

Our mister didnt have his car seat test last night because of back-to-back deliveries which left the NICU respiratory therapist unavailable. They had him on the schedule for this afternoon, but I guess people are having babies a lot these days! ;) So, he's on the list for tonight... Maya sat up in the swing and satted in the high 90s-100. I have no doubt Bobby will do the same in his car seat. They are looking at Saturday for his discharge date. They wont do tomorrow because they will keep him 24 hours post the Synagis injection to make sure of no adverse reactions. But it looks like this is it for him... I still cant believe it... I am slowly getting used to the idea that she will be there without him but it softens the blow to know that he can go in and see her.

We are really hoping that she comes through the weekend well. I talked to her doctor today and he said that if this protocol doesnt work, then they will call an ENT doctor to look at her. Please let this work... Let her take all her bottles and ditch the tube... Let her pass a car seat test and come home next week!!!

Ups and Downs

In wonderful news, we were finally able to hold Maya again. She is stable enough to come out of her isolette. Thank you, God. She isnt allowed to nurse because of the CPAP, but while her feed was hung, I propped the pacifier against my chest and she just went to town. That piece of silicone is the only thing that calms her down when she is throwing a fit right now. I wish I could offer her something more. As it is, I am as close to being inside that piece of plastic as the little arm doors allow. She is finally dressed and the temp is down to 28, which means she'll be in her crib soon. Because it is easier to keep the CPAP in place, I think they will wait to put her in her crib until she is back to the cannula (which we were told would be yesterday but now are told will be today). Her CPAP went down to 5 last night. She is so miserable with it. She will slam her little head face first into the bed. Then, she cries because it hurts. So, I'll hold her head and calm her and then, right when I think she is starting to really calm down, she will do it again. It is heartbreaking to watch. I want to rip that mask right off of her (especially since, when she gets it off, which is often, she saturates around 99-100). The doctors are being extra cautious because they dont want a repeat of Monday. Which we totally get. But we wont see a repeat until the steroids wear off, which will be this weekend.

Can anyone find what is different with this picture than ones previous?

Figured it out yet?

No? Okay, I'll tell you... Bobby is now at 100% feeds and no longer has an NG or OG tube. Our little chipmunk took in 80cc's at one feeding! Although, he seems to keep himself in the 50s and 60s. Unfortunately, I think he is the type that, if you put it in front of him, he will eat. And eat. And eat some more. He'll breastfeed until he falls asleep and then, the second he's moved, will latch on and suck again. No complaints from that end, though, since I know he cant really overeat at the breast. From the bottle... That's another story. I keep asking the nurses to NOT put so much in front of him. He will take whatever he's given!

But, as any NICU parent knows, this new and exciting development signals the beginning of the end... We were told to bring his carseat up last night. So, now it sits on his shelf, awaiting respiratory therapy to do his one hour challenge. We will see what this holds...

I spoke to them about what it means for us if we have one baby home and one in the NICU. The hospital's policy is no visitors under 17 due to H1N1. Thankfully, the NICU seems to make their own policies and they told us that IF Bobby is not exposed to anyone other than us and IF he is not around anyone who isnt vaccinated and IF he isnt around children and IF we maintain a healthy household (ie we dont get sick), then he will be allowed to come into the NICU in a carrier. They wont intervene with his care, of course, and if he gets upset or needs to be fed, etc, it has to be done in the parent room, but he will be allowed in to visit his sister.

This is a godsend. The patient advocate was actually talking to the head of neonatology about us and they came and chatted with me. I guess we are going to be the test case of this new policy that is against the hospital one. I hope it is successful for others. I met a mom in trans 2 weeks ago who couldnt bring in her one twin to see the other and it was rough- and they did it only for 2 days! I cant imagine... Not even one day... So, we will still figure out visits at night, but this means that I can go in and visit during the day. Bobby will count as the second person, except when visiting with Peter (when the 3 of us can be there).

So... It looks like Bobby may be home this weekend. And that Maya wont be. And part of me feels like that with 2 (relatively) healthy babies, I have no room to complain. But I am crushed. Utterly destroyed. I feel horrible that I feel this way when Bobby is at the end of his NICU road and he will be home, where he belongs. I should be overjoyed. And a part of me is thrilled. Because my little boy is coming home! And we have waited SO long for this day. But that is tempered by the knowledge that Maya isnt. That she has to stay behind. That she was on her way out the door too and because of this setback, her car seat remains in my car and her nipple feeds are a 0%.

She is a trooper and a fighter. Peter thinks she will go to complete nipple feeds as soon as she gets off the CPAP and is able to eat again. I hope he is right. I hope that this weekend shows her little trachea is healed completely and that a relapse is impossible... That she will be back to her old self and that we will have her taking her car seat test and ready to go home too... Soon...

Thanks for the prayers. Keep 'em coming!

NICU Day 61 Update (11/10/09)

Yesterday was a better day. Maya's breathing wasnt as labored, as the steroids started kicking in. Instead of a 3 dose protocol (where you get a maximum dose, then 2/3 dose, then 1/3 dose), which is what they did for the second extubation, she is having a 9 dose protocol (3 max, 3 at 2/3, 3 at 1/3), which will run through Friday. Since they have kicked in, Maya has been breathing much easier and has been satting at 98-100 on room air, with her CPAP starting at 10 and moving down to 7 over yesterday. Today, the plan is to wean her off the CPAP and put her back on the cannula. She hates the CPAP. She just cries and cries when she is awake. It doesnt help that she was so hungry yesterday. All we could do was hold the pacifier to her mouth (since she couldnt hold it there for more than a few seconds before she got upset and it fell out). I ended up nursing Bobby and using my feet to pull my chair next to her isolette, lower it to the lowest setting, and, while holding him with one arm, holding her pacifier with the other and just stroking her cheek with the free fingers I had. She eventually fell asleep but it was so heartbreaking. I talked to her nurse this morning and she said that Maya had a decent night but it is obvious she wants the CPAP off. The nurse removed it while weighing her and cleaning her isolette, and she said Maya did great. I am hoping that means the cannula will come on this morning instead of tonight. It's the doctor's decision of course, and they are gun shy of changing her quickly since they all presumed she'd be fine last week and that didnt happen.

It is heartbreaking to hear her crying and know that there is so little we can do. We just sit or stand by her bedside, holding her as best as we can through the little portholes, telling her how much we love her. I feel like we've been transported back 2 months. I just dont understand how this could have happened. Everyone told us how simple the procedure was, how Maya would be back to normal in 2 days... And now this. Over a week. And the only reason she is remotely comfortable is the medication.

They did a repeat x-ray yesterday. The patch of fluid/mucus build up that was in the upper part of her right lung is gone, thank God. They saw a smaller patch lower, but felt that it would resolve itself now that her breathing is almost normal. We are so grateful for that news.

Maya is a fighter and she shows that to us every hour. She tries to pull her mask off, she cries her little lungs out, and she fights against the nurses as they try to do even the smallest task. While it is hard to watch because she isnt helping herself by fighting, it is a relief because it is a glimpse of the Maya behind the mask. And when we are rewarded by those beautiful eyes, it is worth every thing. Every little thing.

The weekend will be the big tell. The steroids stop on Friday and by Sunday, we should know if her trachea is open enough for her to breathe easily. Hopefully the longer steroid protocol will result in more healing for her little throat. Your prayers are appreciated and we ask that you continue. We know that she will come out of this. We have hope that it will be soon.

Bobby is becoming quite the eater. He ate every single feed from 9am until his 6am feed was hung this morning (probably because he was tired from his 3am feed where he ate 80cc's!!!). I wish they wouldnt feed him so much because this happens, but at the same time, I dont want him to be hungry. But he strikes me as the type that, if the food is offered, he will eat it. If you stop him at 60, he stops at 60. If you give him 80, he'll suck until you take the bottle away.

Part of me thinks, too, that they hang the 6am feed because of shift change. I dont know that, of course, but that is usually the feed that is hung. So, he either isnt hungry or it's shift change. Just my opinion.

The nurses tell us that they anticipate wanting his car seat this week. We are excited, of course, but it is also really sad for us. We know that Maya wont be with him if he comes home now. We dont want either of them there longer than they need to be there, but we also know how they react to not being with each other, as well as the pain it will be for us to go home with one of our babies while the other remains in the NICU. Right now, it is only Bobby's eating that is drawing his stay out... Is he doing it on purpose? It wouldnt surprise us... :) He doesnt want to leave Maya behind either.

Fingers crossed, prayers said, our little monkey will come off her steroids well and eat 100% right away so she can show that she's ready to come home too. We are hopeful... So very hopeful...

Happy 2 Month Birthday, Bobby & Maya

Happy 2 Month Birthday. You are both little troopers!

Bobby: 6lb 4oz

Maya: 5lb

Our little girl decided she wanted to be a plummer for her birthday...

Bobby, well... He just wanted to eat (up to 80cc at one feeding!!!) and sleep...

NICU Rollercoaster

2 steps forward and 10 back...

When I got to the hospital yesterday morning, expecting to find things as we'd left them (and hopeful that they'd be even better), I was greeted with a huge shock. Maya was in an isolette and on CPAP. From 7am until 10:30am when I arrived, she'd gone from stable to struggling to take a breath. Because she focused so much on breathing, she stopped trying to keep her temperature and, at 8am when she was checked, she'd gone from normal at 5am down to 95. They wrapped her until they could get an isolette warmed and then got her inside. She was slowly coming up and was 97 when they checked at 11:30.

The steroids wearing off were much worse than they anticipated when we'd called for a morning update. The inflammation was just too much and her throat swelled as soon as the effectiveness was gone. They tried upping the litres on her cannula, adding oxygen, but nothing. They were on the verge of reintubation but the CPAP was able to stabilize her. Even when we left late last night, she was still breathing so hard that her little tummy was caving in with each breath.

They are giving her 9 (instead of 3) doses of steroids. She had her first at 11am yesterday and is on a 12 hour cycle. Her hard breathing has caused a patch of fluid to build up in her lungs. She had several sessions of bradycardia and low oxygenation yesterday. It was another day of hell, both for her and us.

Please pray. Hard. She is such a little fighter, but we'd love it if she didnt have to fight so hard for every little step forward.

Pray for Maya. Pray.

Chunky Monkey

Yesterday, as I was breastfeeding Maya (without the SNS, I might add! Woo Hoo!), I was telling Peter that I might start referring to her as "chunky monkey" on the blog. (This is what I call her sometimes... okay, a lot...) Well, she opens her eyes and gives me the "mean Maya" stare! She doesnt miss a beat breastfeeding but those eyes opened and then squinted. I chuckled and said "OKAY! No chunky monkey on the blog!" So, she closes her eyes and continues lunch. I whisper "But you're still my chunky monkey" and once again, those eyes opened! As her Aunt Sarah said last night when I told her the story, it was as if Maya was saying "I'll sacrifice because it's YOU but no one else!"

Our sweet girl was more hoarse this morning. They think the steroids are wearing off, so they gave her a shot of epinephrine and that seemed to help.

Bobby (who, to balance "chunky monkey" is my little "chipmunk" because of those gorgeous little cheeks that he likes to hide his milk in) is doing great. I think he is keeping his intake lower so that he can stay with Maya and not come home early. He takes his full bottles for us, yet wont always take them for the nurses. He CAN do it... he just doesnt. I cant help but wonder if it is because he wants them to go home together (as we want!)

One of our favorite nurses told us last night that she doesnt think she will see us again. She works again on the 16th. Could we really be home before then??? A week ago, one our favorite weekend nurses (who will be back on the 14th) said the same thing. We really hope they are right.

Bobby has his 2w eye exam today. Prayers that things are the same (or better!). Maya has her 1w post-op appointment tomorrow around 6am. We are making tonight a fairly early night (leaving after Bobby's 6pm care time, so around 7pm instead of our closer-to-midnight leavings of normal) so that we can get some sleep (well, so Peter can, I dont do more than my 3-4 hour stretch, due to my affair with MG) and get to the hospital in time for her exam. Please pray that things look great. We wont know the success of the surgery for several weeks, but we are hoping that what they can see looks good. The idea of putting her (or Bobby) through hell again is a lot to fathom.

Guess who will be here in a week.... MY MOM AND MAMAW!!! They are flying up next Monday afternoon and will be here early evening. They are staying until Friday and we are sooo excited! Mom had initially planned to come up with the idea that the babies would have been born around Saturday, so she'd be here to help them come home and visit. We assumed by their visit that the kids would be home already. We are still hoping. I'd hate for them to come all this way to have limited NICU visits, especially since there is a 2 person maximum per family. That means that I couldnt be with both of them and the kids (you'd think with twins that they'd give you 4 people since there are 2 babies but I digress...)

***

We are rapidly approaching Alexander's first birthday. I still havent figured out what cake I will make. A sailboat? A pirate ship? I'm waiting for a sign... I know he doesnt want a train (Nicholas) or a castle (Sophia). :) We're also trying to figure out where to spend his day. We went to the beach at Spring Lake for Nicholas's birthday and Coney Island (Brooklyn) for Sophia's. We havent felt "beach" for Alexander... We are thinking we may go to Jim Thorpe for a brief visit. Before he was born, we went and listened to Christmas carols being sung on Main Street. Perhaps. We dont know. He will tell us, I'm sure. We'll have his family dinner before my mom and grandmother leave (so, probably, the 18-19th, I have to confirm with Peter which night) and then we will do the 23rd in private, as we did for Nick and Sophie. We want the actual birthdays of our children to be ours. We will celebrate publicly with their grandparents, etc, on a day near their birthdays but the days themselves are something we want kept close to our hearts. Perhaps once Bobby and Maya are much older and birthdays become one of those things that is mostly just another day (because they have their own lives) things will change... But for now, this is how we feel, and such is life...

***

I read this post this morning. It was quite touching. Perhaps I will start bringing white roses home on their birthdays...

Daddy Pictures...

As promised in my last post... (click here for all pictures)

Update at 10:30am: Guess who is moving back to the transitional nursery today??? If you said Bobby and Maya you'd be correct!!!

NICU Day 59

We had dinner with friends last night (who brought the kids the cutest elephants as gifts- we have a pic of Maya with hers here), so we decided to make the 11pm/midnight visiting times (hence my being awake right now and attached to MG). When we get there, Maya is screaming her little lungs out (which sounds terrible since she makes barely any sound), but there are tears. I mean, she is upset. The nurse tells us this just started and that she was fine at her 8pm feed, where she took a full bottle and then fell asleep. She had to have her OG tube replaced (they are doing OGs until she is off the cannula) and so I thought that perhaps the replacement hurt her little throat. But regardless of the reason, she is screaming and crying, and it is heartbreaking. We nixed the bath and Peter just wiped her down and, as soon as possible (which wasnt soon enough for me), I was holding her. She did breastfeed off and on for about 20 minutes. She'd suck and then pull away and cry, and then latch back on, and repeat. She transferred 15cc, which was amazing considering how much she cried or just held my breast and buried her head against it. Afterwards, I just held her and sang to her until she calmed down, while we gavaged her milk. She finally fell asleep (or so I thought) and, since I was soaking wet from leaking, I decided to put her down and go pump. Maya had other plans. The second I put her down, she started to cry again. So, up she went. I held her until Peter put Bobby down from and held her so that I could pump and not worry that she was crying in her crib. When I came back, he was holding both (I have a great picture of the three of them that I'll post when I'm more awake). She finally fell asleep around 1:30 and we were able to put her to bed, but, of course, she was woken at 2am for eye drops, diaper change, and her next feed. She took her bottle for Peter and was able to fall asleep. Once again, I had to go pump, so Peter fed Bobby as well, who also took his bottle.

On the one hand, it was so wonderful to be able to comfort Maya's cries, but on the other hand it was so hard to have them. She and Bobby dont really cry so when they do it means there IS a problem. Was she hungry? She didnt seem to be comforted by food. Was she lonely or scared? Could be, since holding seemed to help a little. Was she is pain? Possibly (Probably???)... I hope not. She looks at you with these sad little eyes and her mouth is open but so little sound is coming out. It just melts you and you want to change the world for her. Even though I am so wiped out, I wish I were there right now, for her 5am care time... And, of course, for Bobby's 6am... And then the 8am/9am... You get the picture. Leaving is the worst, no matter what time it is...

***

I saw the following info on a blog I follow. As you know, my brother-in-law died from neuroblastoma, and things of this nature are of special interest to our family. I'll be mailing out a card on Monday and I invite you to do the same. (FYI, Snopes lists this as legitimate in case you are concerned...)

http://www.mlive.com/news/detroit/index.ssf/2009/11/thousands_send_early_christmas.html

http://www.zimbio.com/Noah+Biorkman/articles/bJCw9GM08Eq/Noah+Biorkman+Dying+5+Year+Old+Gets+Earl

http://www.snopes.com/inboxer/medical/biorkman.asp

Hi All!

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please let's make this little warrior's wish come true.

Send cards to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, Mi 48178

Twins EDD: 36 weeks (NICU Day 58)

Well, today was the day... Today was the day that I would have been 36 weeks pregnant, my cerclage would have been removed, and, in theory, our twins would have made their appearance. November 7th... It was day that I had played out in my mind so many times. A day that I'd hoped would arrive with a big belly. Instead, my belly is a flabby, stretchmarked canvas that birthed beautiful babies nearly 2 months ago...

***

Maya's extubation went so much better yesterday. Thank you so much for your prayers. At 11am, they did the procedure. She actually was breathing on her own but her oxygenation was in the 80s (instead of the normal 90s, although above 82 doesnt sound the alarm on the monitor), so the neonatologist opted to give her a room air cannula so that she didnt have to work so hard with a sore throat. This morning, he said he'd like to wean her off that this weekend since she doesnt need it for breathing support. They did an x-ray the other day, just to make sure it was her throat that was the culprit, and the CRNP told us that she has perfect lungs. (Which is something every preemie parent wants to hear in spades.)

It was wonderful to get the contraption off of her. As soon as the vent was removed, those beautiful eyes opened. And she reached for us and cried (and the sound is just as sad as the crying). We didnt love the nurse she had, who basically wanted to snug Maya up in a snugglie and hide her from the world, without touch or sound. (Look, lady, our daughter hasnt been held since Tuesday at 4:30am, and hasnt opened her eyes for more than 2 seconds since then either, and now you think it is best for her to not be loved on??? I think not.) This was seconded by her doctor who, when Peter asked, "what can we do?" responded simply with "show her some love." Amen, doctor.

Peter held her first. He's been a mess since Monday. He has wanted to do nothing but protect her from this and, not being able to, feels as though he has somehow failed her. He was chomping at the bit to have her in his arms again and, as much as I wanted to be the first arms that held her close, I backed away. I will have every day all day. He doesnt get that opportunity. Give him what he can. He looked so relieved once he had her close to him. I actually kangarooed her last night, which was awesome. Her warm little body flush against mine, those beautiful eyes looking up to make sure I was there before she rested her little head and slept. Oh... So sweet... She took 3cc's of her bottle for Peter but he opted to tube the rest since it was obvious that her throat hurt and she wanted to rest. Which she needed.

As you can see, she is very swollen from the steroids (this has gone down as of this morning and she looks like our sweetness once again!) but even with the puffiness, she is gorgeous.

Right after the ventilator was taken away, Peter brought Bobby for a visit. Too bad they didnt hold their pose; he reached out and touched her hand. It was so sweet.

As he's been doing for days, Bobby is watching Maya from his crib.

***

This morning when we got to the hospital, our nurse informed us that Maya was being
sprung from her warming bed and going back in her crib! So we were able to get her dressed and put her back in her safe little bed! She was wide awake and so we opted to try nursing- and boy am I glad that we did. She took in 32cc's! (She is currently at 45cc's per feed.) I think she would have gone all the way, but the nurse insisted we weigh her at 20 minutes. They are allowed 30 minutes for a feeding; the nurses dont like to go beyond 20 minutes for breastfeeding in case they have to supplement with a bottle. But it sucks when the baby is really into nursing, like Maya was. I tried to put her to breast after the weighing, but she had lost interest. Bummer. But this was 32cc's WITHOUT the SNS! I used a nipple shield since Maya had the OG tube in and I was afraid she'd have a really hard time with the nipple itself, but she did a wonderful job! I'm so proud of our chunky monkey!

Bobby is doing tons better since they were put back together. He fed 74% of his feeding and is up to 5lb 13oz! Almost 6 pounds- can you believe it!!! (Maya lost weight because she was only being given IV nutrition for most of last week, but as of last night, she is just shy of 5lb at 4lb 15.6oz) If he is awake, he will nipple his full feeds- and more. He is set at a minimum of 49cc's; at one feeding, he took in 55! When awake, he is more than happy to eat, eat, eat.

***

In happy breastmilk production news, things are really doing well. I'm keeping up with their increases. Today, after breastfeeding 40 plus (I say plus because I leaked to the point that both of sides of my shirt and pants were wet), I pumped and, in 20 minutes, got 115 additional cc's. Not bad... Average pump is 90-100, and that is without the breastfeeding. I'm up to above 750 for the day, average. I'd like to increase up about 250 more cc's. I think with more pumps (or breastfeeding sessions) this is more than doable. I've been reading "Mothering Multiples", a LLLI publication that deals specifically with breastfeeding twins and it lists 750ml's a day in the "optimal" range for production. So, woo hoo. Most babies, according to literature I'm reading, only eat about 2oz per pound (so, for a six pound baby, that is 12oz or 36oml per day). Bobby is currently at approximately 400ml per day, which is well more than he needs. Once they come home and they are eating on demand, I think things will be better than being "force fed" in the NICU to gain weight.

(Oh, a sweet story... Their nurse on Thursday night took a picture of Bobby and photoshopped it to read "Get well soon, Maya. Love, Bobby" and taped it to her bed. So sweet...)