Thursday, March 31, 2011

Countdown to Surgery

So yesterday was the much anticipated cardiologist appointment.  We were eager to hear what her doctor would say.

Last week I called and spoke to his nurse, telling her about Cora's increasing symptoms:  heavier breathing, sweating more, pale skin, nostrils flaring more.  The nurse spoke to the cardiologist and called us back, telling us to increase her Lasix dose a little bit, and told us to plan to schedule her surgery at her appointment.

So we knew it was coming, but we didn't quite expect to hear what came next.  He told us that her symptoms are definitely increasing and that it's time to schedule the surgery.  Of course, we agreed, thinking we'd probably be looking at least 2-3 weeks out, but he told us he'd like to do it early next week.  Like Monday or Tuesday.  So we scheduled for Tuesday.  Just 6 days from her appointment.  I'm not sure how common that is, but it seems like most of the families I hear about have to wait longer than that.

In many ways, it's great.  It means that it will be over soon.  We've been waiting for this ever since her echocardiogram in the NICU the day after she was born.  But it always seemed like the future.  It's nice also that we don't have to anticipate the date for weeks to come, like many other parents do.

But it also brings all my anxieties, nervousness and fears right out into the forefront.  I've been consciously and unconsciously spending a lot of quality time with Cora for the past several weeks.  If she's awake, she's usually with me during the day.  Even if that means just lying next to me on the couch while I pump.  I've been wearing her in the baby carrier, snuggling with her for naps, and being ridiculously goofy in my attempts to get her to smile.  I know that infancy goes by so quickly, so I've been trying to really appreciate her.  To be happy she's not napping so that I can interact with her, even if it means ignoring the other chores that beckon endlessly.  And now, of course, I just want to hold her tight and not let her go.  The thought of handing her over to the surgeon seems so impossible, even though I know it is necessary and will benefit her so much.

But this morning she is very tired.  Last night she was more fussy than usual, so I cuddled her to sleep for an early night.  Other than being woken for feeds, she slept right through and is now napping again after her last meal.

And I feel simply awful, because this morning after feeding her, I stood up from the couch without checking her NG tube.  It was stuck in a couch cushion, and stretched and pulled and came all the way out, pulling out from under the tape on her face but leaving it intact.  And it must have been painful because the poor girl screamed bloody murder.  For a whole minute or two.  Now for many parents out there I know that a minute or two is nothing.  But for Cora it sure is, and it didn't do much to soothe my guilty conscience.  Then after she was calm, Nick came and pulled the tape off her face and more tears ensued.

So we decided to let her go for the next few hours without the tube and Nick will put a new one in when he's home in the early afternoon.  Give the little girl a rest.  Not sure if it would have been better to do it all at once.  It's so hard to put your baby through misery.  No matter what it is.  Shots at the doctor, shoving a tube up her nose down into her stomach, or handing her off for open heart surgery.

So for the next 5 days I'm trying to hold it together, to give my girl all the love I can, and to visualize us seeing her after surgery with wide open beautiful blue eyes.  To picture her beginning to eat well, and grow, and not struggle so much just to breathe.  To grow and to thrive and to get an amazing chance to start over, good as new.

Please keep our girl in your thoughts, and if you pray, in your prayers.  She is strong and lively and wonderful, and I know she will do just fine, but I do believe in the power of prayers, and all of yours are appreciated.

Thursday, March 24, 2011

Could She BE Any Cuter?

Yesterday was a fairly eventful day.

We started out by checking into the Diagnostic Center at Legacy Emanuel Hospital at 8:00 am for an upper GI scan, barium swallow study and chest and lung x-rays for Miss Cora.  They had called to confirm the appointment and left a message telling us that she shouldn't eat for at least a couple of hours prior to the appointment.  So she went in a little hungry.

And she did great!  It was a very long appointment. First she got to drink the yucky-looking thick clay-like barium drink through a bottle and we watched on the screen as it made its way down to her little tummy.  The staff present (doctor included) seemed to think that all looked pretty normal.  She even displayed her reflux, gagging and vomiting, which, of course, kind of sucks, but in this case, it was nice to get it "on record."

Although it seems kind of odd, speech pathologists are the therapists that work with feeding in small infants, and the therapist that consulted with us at the Feeding Clinic a few weeks ago was there.

She told us that Cora has a hyper-sensitive gag reflex (and of course Nick says he could have told me that!) and that her gagging starts the cycle of choking, which, along with her reflux, seems to be causing her all the trouble.  She also gave us some techniques to de-sensitize her mouth.  So it's nice to have some more tools in our belt.  She doesn't think thickening her liquid is a good idea for her (Yay!  Don't want to use that crap if we don't have to) and thinks that if she's in pain (which she is) then we could try the Zantac again.  So I think we'll start another trial of it tomorrow.

Then they had to take pictures of the liquid going through her digestive tract all the way to the large intestine.  Apparently with babies it usually happens pretty fast but with Cora it seemed to take forever.  We didn't get the go-ahead to leave until almost 4 hours after the beginning of her appointment. Too bad for Nick's work schedule today!

And impressively, we got a phone call from her pediatrician a few hours later, telling us that the scan was pretty normal, with no anatomical abnormalities, other than her slow lower bowel, which is not unexpected in people with Down syndrome.

So after all of that, it's pretty good news.  Nothing dire, nothing that needs surgery, etc.  But it also means that we just have to live with her crazy reflux and gag reflexes.  We're hoping that with our new insight we can minimize her gagging/choking fits and hopefully help her eat.  Maybe the medication will help as well.  But it's not going to be an easy fix, for sure.

In way more fun news, Miss Cora Bean decided to start smiling huge open social smiles at her Daddy yesterday!  Woo hoo!  The timing was kind of unfortunate though.  We had just put her on the bed to change out her NG tube when she started grinning at Nick.  I, of course, run for the camera, but I never got the best smiles recorded.  But it's quite exciting, because I know that we can look forward to many more of her smiles!

 And then, we became the traitors, as we tortured our poor girl by putting in the NG tube just minutes after she dazzled us with her smiling.  Talk about feeling guilty!

In a week we'll meet with her cardiologist, and we should find out then when her surgery will be.  But probably in April some time if his prior estimates were accurate.  Yikes.  As much as I've been looking forward to having it done, I had a vision last night of handing my baby over to the doctors while she is wheeled away to be operated on.  And that did not feel good.  I know that it won't be a fun day.  But we are looking forward to the results, for sure.

Now I'm gonna go try and get some more smiles out of her!

Monday, March 21, 2011

World Down Syndrome Awareness Day- A Birth Story

Today is National Down syndrome Awareness Day.  March 21st.  3/21.  Trisomy 21. 

It is the first time I have been aware of this day.  And suddenly in my life this day has unbelievable significance.  My love, my girl, my beautiful little Cora Bean was born a little over 9 weeks ago, and stunned us all by being born with Down syndrome.  It was something I had never imagined, had never considered, had never expected could be possible.

But here she is in our lives.  And I have never been more grateful.  We are so blessed by this beautiful little being.  Every time I look at her I can’t believe that I love her more than the last time I looked, but it’s true.  And as much as finding out that she has Ds was an unbelievable shock, I can’t imagine her any other way.  All the challenges we’ve faced, and all the fears that we have with her impending heart surgery and the challenges she will face in her future are still worth what we’ve gained. 

The day Cora was born will probably forever be the happiest and the saddest day of my life.  I had been ready for a baby for a number of years, but the time was finally right for me and Nick to begin our family. Over the years Nick had expressed anxiety over becoming a parent, but knew that eventually it was something he wanted.  And one night, a month before our girl was conceived he told me that he was ready to have a baby.  So we stopped trying to prevent a baby, and started trying to produce a baby.  I know that many people have anxieties over having children.  I had always thought I may have trouble conceiving.  I’m sure most of that was simple anxiety, but I had a medical reason to think that it may be difficult, so I was unspeakably thrilled when we conceived on our second try.  And the fact that my younger sister Erin had conceived 3 days before we did made it all seem especially serendipitous. 

As any expectant mother knows, the first trimester is fraught with worry.  But we made it through the first trimester and the rest of the pregnancy with flying colors.  All was healthy.  We declined screenings and tests, and opted only for the 20 week ultrasound, where we accidentally discovered that our little Bean was a girl. 

I felt pretty well up through the end.  I didn’t miss any work.  I actually left work at 4pm on the day I went into labor when my contractions were about 10 minutes apart.  Still 2-1/2 weeks before my due date, I fully expected to deliver late and was in denial until my contractions were about 5 minutes apart.  We had planned a homebirth with the support and help of an amazing Naturopath Midwife.  With the help of Nick’s massaging hands to help with back labor, and the wonderful birthing tub, I labored through the night and was fully dilated by 7am.  Then came the hard part.  I pushed for 6 hours.  6 hours.  I know that in the hospital I would have had a C-section hours earlier.  And we were pretty darn close to going to the hospital.  But our last resort was vacuum assistance.  I eagerly accepted, and was very happy when Miss  Cora arrived at 1:14 that afternoon, to a mama so exhausted she couldn’t even hold her own baby.

And when my little girl was placed on my belly, blue and covered with vernix, she looked at me with her big blue eyes and blinked.  And I just knew that something wasn’t quite as we expected.  Afraid even to think it, my first thought was, “Oh my God, she looks like she has Down syndrome.”  But I thought that I had to be wrong.

 My memories of the sequence of events after her birth is a little hazy.  I was beyond exhausted, was weak and delirious even.  I do remember that at some point while I was still on the birthing stool, I asked if she looked normal.  I nursed her, and was thrilled that she actually latched on and sucked, although I couldn’t even sit up in bed, I was so sore.  And after both Cora and I were cared for, Mary finally came to us and told us what I will remember for the rest of my life.  She told me that Cora displayed several of the physical characteristics of a chromosomal abnormality, like Down syndrome.  She explained what those characteristics were (the flat bridge of her nose, the slanted eyes, the folds of skin on her eyelids, the folds of skin on her neck, the space between her toes, the crease on her hand) and told us that a blood sample taken from her placenta would tell us for sure.  I was lying there, holding my sweet girl and just thinking that there was no way it could be possible.  I couldn’t cry.  I couldn’t even respond.  I just listened.  And inside my mind was racing.  All I could think was “How could this happen to us?”  I could think of nothing but all the other babies born to all the other mothers that were completely normal.  I thought that she would live with us for the rest of our lives, that I wouldn’t return to work, that she would have to be home schooled, that she would never have a normal life or get married, that our lives would never be what we had expected.  And I was ashamed.  Ashamed to announce to the world that she was born.  Ashamed to tell our families that we had produced a baby that wasn’t “normal.” 

I had been missing calls and texts throughout the day, since my mom, dad and sister knew that I was likely in labor.  But finally when the midwives were leaving I called my own mommy to tell her that Cora had arrived.  And my family cried the tears that I could not.

The 24 hours after our little girl was born are difficult to remember.

But what happened next will be etched forever in my memory.  The next day, Nick reluctantly left us alone to go to the pharmacy.  And then my little girl started to cry and promptly turned blue.  After frantic calls, we decided to wait and watch, but then she did it again.  So off we raced to Legacy Emanuel Hospital, where there is a good NICU, and watched as our little baby girl turned blue again and again, while being prodded and poked by the Children’s ER staff and then the NICU staff.  After an Echo, the cardiologist explained her heart defect, a complete AV canal defect that was causing her cyanotic episodes.  We were told that it could be surgically repaired in a few short months and that the prognosis was good.  And that cardiologically she was ready to go home.  Enter newborn jaundice and feeding issues.  And tears and compromises and difficult decisions.  And 18 days in the NICU, being parents that could only really hold their baby while feeding in order to “let her grow”.  Being parents that went home at night leaving their newborn behind.  Being a mother that didn’t get to breastfeed because it was too hard for her baby, that didn’t get to snuggle up in bed with her newborn, that didn’t get to gently recover from the rigors of childbirth, that didn’t get to have a “typical newborn experience.”  I did cry for myself for a few days, resentful of all the well-meaning, yet somehow still insensitive assurances.  We stayed in the NICU all day, every day she was there.  I am sure we annoyed the nurses and doctors.  

And after 18 days, we got to take our girl home, feeding tube and all.

But it didn’t take long to be thankful.  Thankful for our girl.  She is so easy to love.  So sweet, so beautiful, so incredible.  We really can’t imagine her any other way.

And in a way, I think we were lucky that her heart condition came to the forefront.  Because then Down syndrome didn’t seem so bad.  And then her hospital stay caused us anguish.  And again, Down syndrome didn’t seem so bad.

And now, she is home and she is our full-time daughter, and we are her parents.  And we love her beyond belief.  And Down syndrome indeed doesn’t seem so bad.

She is going to have open heart surgery in the very near future.  And that is very scary yet at the same time we can’t wait.  We can’t wait until she is not hindered by the condition of her heart.  We can’t wait for her to be able to eat well and start developing well and start all the therapies that she will need to encourage her development.

And in the meantime we deal with her Down syndrome every day.  I read, e-mail and talk to other parents of babies with Ds. I plan for her therapy appointments, read about the help we will need to give her, and talk to all my friends and family about my thoughts and my feelings about having a child with Ds. It really is the elephant in the room.  No one talks about it until I do.  And I understand that.  I wouldn’t know what to say either.  I had never even met someone with Ds until Cora was born.

But now I have.  And now I am aware.  Intimately aware.  Our little Bean is only 9 weeks old, but already I can’t even imagine how I ever existed without her.  It’s like I spent my whole life waiting only for her.  Like I am only now myself now that she is here with me.  That she is the part of me that has always been missing. 

And I know that she will bring challenges.  But what I unequivocally know in every bone in my body and with every breath I take, is that she is my baby, my girl, that she was born to be with me, and that I have never loved anything so very much.  And I am so thankful for her.

So now I am aware of Ds.  Now I am thankful , even, for Ds.  Thankful for all that my girl is, and all that she brings to the world.  My beautiful little girl.  I love her so very much.

Happy 3/21 to us.

Sunday, March 13, 2011

Two Months and Counting

 It's officially 2 months ago today that our little Cora was born into our lives.  What a whirlwind it has been.  These days, life has settled into somewhat of a routine, with variety added in the form of doctor's visits and minor tweaks to her feeding regimens.

Her NG tube was put back in earlier this week, and with that, we've happily experienced a big reduction in stress.  While it seemed like a daunting decision, by the time the tube was in the decision had been made for us by our little girl's dwindling intake by bottle.  Now, whatever she doesn't eat we can put through her tube.  She is still experiencing considerable problems with reflux and vomiting though, and we're currently in search of some answers.  After speaking to her new pediatrician yesterday (yes, she called me on a Saturday!) we've decided to do an upper GI exam and a swallow study, as well as some additional x-rays to determine whether her heart and lungs are involved.  Hopefully there are no significant structural abnormalities that could be causing her difficulties, but at the same time it'd be nice to have some insight or explanation.  Her pediatrician doesn't think that a change in medication will be of much help.  After about a week on Zantac we decided to stop it, since the amount of vomiting seemed to increase during that time.  But it's so difficult to tell what is actually affecting her reflux.  We're currently on a test-run of removing the formula fortification from the breastmilk, and relying solely on the additional fat we add to her milk.  Of course, we'll monitor her closely to see if her weight gain slows, as we don't want to compromise her growth.  But it seems worthwhile to evaluate the things that we can control on our own.  It just doesn't seem like there are any concrete answers so far.

More than anything, I am disturbed by the heaving, the gagging, retching and vomiting that can go on for several minutes and usually leaves her upset and absolutely exhausted.  It often takes up precious feeding time and then leaves her too tired to finish a feed.  But thank goodness for the feeding tube to help her finish.  Of course, simply using the tube doesn't mean she won't have one or more of her fits.

But we are very pleased to report that as of yesterday she now weighs 8 pounds 8 ounces!  So she's definitely still increasing her weight, which we are very excited about.

She's turning into a veritable little chubster, our girl is.  The cheeks alone speak volumes, but her little arms and legs are starting to display sweet pudgy little rolls as well.

In terms of other development, she's getting close to smiling real social smiles.  For now we get glimpses of her smiles, but they are fleeting and difficult to predict, and almost impossible to duplicate.  I've come close to photographing a few, but she always seems to leave me hanging.

It's been so much fun to watch her start to grow up into an older baby, capable of lifting her head, interacting more and more and having fun playing silly games with her daddy.  She loves to be changed (diapers and outfits, thank goodness!), loves to dance around the house, loves to have her arms and feet played with during songs, and adores her swing.  Last weekend we had to make an emergency trip to Babies R Us when her original loaner swing broke down.  Don't know what we'd do without it. 

But we're also seeing signs that her heart condition is worsening.  This week it became obvious to me and Nick that her complexion is paler.  She seems to be more labored in her breathing at times, and seems to be more exhausted by the efforts of feeding and vomiting.  It's hard to believe that she could be having her surgery in just a few short weeks.  We still don't know when for sure, but after her cardiology appointment at the end of the month we should know more.  Most likely we're looking at some time in April or possibly in May.

It's nice to take a moment to reflect while my little sweetheart snoozes peacefully in her swing.  Getting ready for her next bottle/tube in about half an hour.  So I'm gonna go give my little beauty a kiss, while I prepare to feed her and the rest of our little family.  Lots of love to everyone from me, Nick and our little Bean.

Tuesday, March 8, 2011

To Tube or not to Tube?

I wish I'd been journaling this entire experience of becoming Cora's parent.  I know that becoming a parent is probably one of the most transforming experiences in life.  And I know that is likely the case for everyone.  But, my former life and former self seems so distant right now.  Life has been reduced to the simplest of moments, the simplest of efforts, yet in ways it has never been so hard.  We are blessed to have found a sleep schedule that for the most part keeps us rested, and have a great system at home.  Our routines surround the frequent task of feeding our little Bean.  And oh what a task it is.  In between, the challenge of completing the other simple tasks:  keeping the house and kitchen clean;  preparing food (not quite as varied as before); processing milk using our recently acquired lacto-engineering skills to optimize Cora's calories and use my abundant milk supply; planning for and getting to all her doctor's appointments.  But these simple things don't always feel so simple.

And, oh the decisions.  Each decision we make seems all-consuming.  Starting new medications, having to switch pediatricians since one of her medications is so costly and couldn't be purchased by our former doctor, trying different formulas to fortify the breastmilk and trying to determine to which one she responds better.  Constantly adjusting her feeding schedule and our techniques to try to get her to eat better.

And in between and during all of this, processing all the information, thoughts and emotions that come with her arrival into our lives.  I keep reminding myself that we are dealing with many of the things that all parents face.  I spend a great deal of time reading and sharing information with other parents who are in similar situations.  I've joined an online forum for parents of kids with Down syndrome that is incredibly insightful, helpful and validating.  I've been following the impressive blogs of a number of mamas out there with beautiful and amazing babies with Ds, and it makes me happy, and hopeful.  But sometimes it poses new concerns and worries that I hadn't thought of yet.  And it helps validate some of the feelings that I have had.  I am so lucky that Cora is such a lovable little soul.  It makes it possible to deal with all we've been given.  But sometimes I can start to feel sorry for myself and sorry for Cora and have feelings that are difficult to acknowledge.  Knowing and reading about others' similar thoughts and experiences makes me realize that I am not alone.  I still have my moments of sadness, and of course, of frustration, stress and anxiety.  But I am lucky to have this building network of support, and of course, this beautiful little person who keeps me motivated, who makes me smile, who makes me want to do everything all for her.

Especially frustrating of late has been Cora's feeding habits.  We were thrilled when she got off her NG tube shortly after coming home from the NICU.  But in the last couple of weeks, her eating has deteriorated.  Incredibly, she has continued to gain weight. I attribute this to the extra calories in her enriched and fortified breastmilk.  But her numbers have dropped.  Her vomiting has gotten pretty frequent and looks so uncomfortable and is difficult to watch.  We've tried many different things.  She's on medication to treat reflux (but unfortunately doesn't always keep it down).  We're trying to determine the best type of formula to use to fortify her milk.  But feeding her lately is the daunting experience of either trying to wake her up or calm her down enough to eat.  And it doesn't always work.  Her "horsing" has become pretty disturbing at times.  She seems to be seriously uncomfortable.  And we have become concerned that our continued efforts to get her to eat even when she seems to be done may lead to (if they're not already leading to) an aversion to eating.  In the long run, this is the most concerning to me. 

So we've been talking about putting back the NG tube.  And talking.  And talking.  We'll decide one thing, then change our minds when she has a relatively successful feed.  But she's overall not getting much better.  And it seems wrong to regress, to throw in the towel on this.  We've been told that she may regress in the weeks before her surgery, and that we should be prepared for that.  Her cardiologist even says that if her feeding or weight gain slows much it will be a reason to perform her surgery earlier than anticipated.  But it doesn't seem as though her other heart-related symptoms are worsening.  So it's hard to know if her eating is related to that.  How does a parent really tell?  And the fact that she has been gaining weight makes making this decision not nearly as cut and dry and we'd like it to be.

But I think we have come to the decision that we need to make it easier for her now.  That if we make an effort to feed her and she just doesn't want to take the last 20 mLs we can give the girl a break and put it in the tube.  That giving in on this doesn't mean that we have failed.  That trying to keep her interested in feeding and avoid creating an aversion in the long run may be more important to her future eating skills.

In the grand scheme of things, a feeding tube doesn't have to be so dramatic.  I tell myself it can be one step on the way, one way to help her get to where she needs to go.  But we know it's irritating to her, and that she'll pull it out again, and that it's so much nicer to see her sweet little face without a tube and a piece of tape.   I guess all we can do is continue to make one decision at a time, and try to help her in the best way we can.

And we can pray that once her surgery is done and she begins to heal, her progress will skyrocket and she will feed well, and we can move on.  But I know that moving on doesn't mean that there won't constantly be new challenges.  Cora will be faced with challenges that we never expected we'd be dealing with.  But hopefully we'll be able to take these things as they come.  And hopefully we'll make the right decisions, at least some of the time.