If Clara ever buys lottery tickets I would say her odds of winning are fairly decent.  After all, her odds of having Down syndrome were less than 1%, her odds of being born with a congenital heart defect were less than 1%, and now if she has cataracts her odds of having those were 1 in 5,000 (a fraction of a percent, but I'm not going to do the math).

Her growing list of problems have been on my mind all day.  The pediatrician called this morning.  I was expecting his call, too.  What can I say--my gut has been on target lately.  She still has jaundice (I knew it), but it is an acceptable level and we'll just have to monitor it.  But, something new has come up.

The morning after she was born the pediatrician had come to visit with me and discuss his findings.  One of them was her blood platelet level being somewhat low at 91,000.  He wasn't too concerned but just felt he should mention it.  Then when we had gone for her first office visit it had gone up to something like 120,000.  Well, results from the blood draw yesterday show it is now down to 52,000.

I looked this up via Dr. Google.  The medical term for her condition is thrombocytopenia (I doubt I will ever attempt to pronounce it, though in my mind I do.  It's easier there.).  According to WebMD if her levels fall below 50,000 excessive bleeding could occur during injury.  150,000 platelets per microliter is the normal level.  She is way below normal.

The thrombocytopenia itself isn't a major concern; the greater concern is the cause.  Something is causing it so her doctor is sending us to a hematologist on Friday (who happens to office at the children's hospital) so we can hopefully find out.  The pediatrician said that after talking with her they suspect it could be a virus that was dormant in me and passed on to her.  He did say a specific virus but my brain didn't retain it.  It was busy recording information it thought was more pertinent.  If it's viral that's fine.  We'll move past it.  In fact, I'm just going to keep my fingers crossed that's all it is.

I told my mom this morning that now Clara has three unknowns.  The severity of her heart condition (though the doctor said yesterday it sounds strong), whether or not she has cataracts, and the cause of her low platelet levels.  Mom was quick to correct me that there were four unknowns, adding her feeding problem to my list.

The feeding problem is the only one I feel I can fix and that is my focus for the rest of the week.  Come Monday she is going to weigh more.  I am determined.

Oh, and Clara's odds of having thrombocytopenia at birth?  Less than one percent.

Clara inside her sling.  It's a comfy and peaceful world in there. 

Of course I'm going to start with the good.  Yesterday evening Clara's Lite-on-Shoulder baby sling came in the mail.  I practiced using it while we prepared dinner last night and to my surprise Clara loves the thing.  It's not that I expected her to hate it.  I guess I thought that it would be more about me and my pleasure and she just wouldn't care.  Well, that is not the case.  Cxdy said it must be like being back in the womb for her and I think he's right; after all, she still isn't due out of the womb! (This coming Saturday is her due date).  She is so comfortable in it that she falls into a deep, heavenly sleep, which also makes it easier to put her down in her bassinet and keep her there.  She looks so adorable snuggled up in it as evidenced by the photo.

As for me, I find it comfortable to carry, but I do worry about her positioning, as sometimes it seems like maybe her head gets a little too tilted forward.  But I did use it this morning during Clara's doctor visit and it was so much easier to corral Lxkas without having my hands tied up with her.

  

Clara and I model the sling...

While brother plays in the sink. 

Other good things happening today:  I made contact via a web form with The Little Light House to get on their waiting list.  I'm just waiting on a call back.  Also, I called the SoonerStart offices and got the ball rolling to get Clara's early intervention paperwork completed.  They will be back in touch with me in 7 to 10 days.  I'm not sure why there is a wait, but that's okay.  She enjoys being a newborn and doesn't realize she's missing it yet.  

I mentioned we had a visit with the doctor today and this is where the bad and kinda ugly come in.  

First of all, I'm glad that our winter storm mostly stayed north because the streets were fine this morning.  I really didn't want Clara to miss this appointment.  It's just a gut feeling I had that she needed to be seen.  The result is that while there wasn't anything devastating life just seems a little bit more challenging.  

Clara has lost weight since her birth, which I did not expect.  She now weighs 6 pounds and 4 ounces--8 ounces less than birth.  The doctor said she should be gaining weight now.  His suspicion is that she is having a hard time sucking at the breast.  He theorizes that while she works hard to suck she is burning more calories than she is taking in so he prescribed a preemie formula to us that has a high fat content.  We are to give her an ounce of this after each nursing.  

I'm not so sure about his theory.  I wish he was right.  I want him to be right.  But when we got home I had to wake Clara to feed, which she did for about ten minutes, and then I tried to give her the additional ounce.  She didn't want anything to do with it--just flat out wasn't interested.  In fact, she started gagging on it as I tried to keep the bottle nipple in her mouth.  I'm worried that young lady simply doesn't have an appetite, which isn't good because she needs to grow.  But, I'll keep trying.  He wants to see her back Monday for another weighing, which has me relieved. If this isn't working then he and I need to keep talking.

I noticed at Clara's last appointment that the doctor seemed to have an interest in her eyes, but she wouldn't let him have a very good look just yet.  So, this time I wasn't surprised when he spent a good deal of time looking into them with his instrument.  He said he sees a red tint when the irises react to light (I could have phrased that totally incorrectly, but that's what I walked away with) which could be attributed to her darker complexion, as I presume it is not uncommon among darker folk.  But, he is referring her to an ophthalmologist to rule out cataracts.  Again, not devastating, but it's something I definitely need to read up on and prepare myself.  

Clara on a table in the lab at the Children's Hospital.  Unsuspecting. :(
Her foot is in a warming pad. That's where the tech will squeeze for blood.

After the appointment we went downstairs to get a chest x-ray to take with us to our appointment with the pediatric cardiologist on the 14th.  Then we went across the street to the children's hospital to get her blood drawn.  He wanted to check her platelet count again and also check her bilirubin levels.  To me she still looks a little yellow. 

When we were leaving the children's hospital there were three men huddled together outside.  One of the men was praying loudly and I heard him ask God to "help her young lungs to heal" and immediately I lost it.  Tears started flowing and I hurried past their group so they wouldn't see.  

I lost it because in the building behind me someone's little girl was struggling for her life.

I lost it because there were plenty of young children in the building I had just left struggling for their lives.  When I'm there I try not to look at them too closely.  I don't want to know if they are short-term residents or just passing through like us because I don't want to think about it.  

I lost it because I don't want that building I had just left to become a routine for us.  I don't want to know it any better.  

I lost it because I know there is something wrong with Clara; why doesn't she hunger for enough milk?

I lost it because that could easily be my little girl in that building struggling for her life.  

And that is the ugly.

The day unexpectedly got away from me.  One minor errand after lunch that included a  few stops seemed to eat it all up, as today I discovered what it was like to run errands with a newborn and toddler under 2.  It wasn't fun.  Everything seemed to take ten times as long (I'm seriously asking myself if that is an exaggeration).  And then on top of the slow pace we have a winter storm coming in, so fastening and unfastening two babies from their car seats at each stop while the cold rain comes down on my back is quite... invigorating.  I'm sure it will be much smoother once that baby sling gets here.  I really need that baby sling.  Ugh!

I had a small list that I think I only got half way completed.  Among the items I missed was a phone call to Little Light House.  This is a child development center or day school of some sort for children with disabilities and it's been recommended to me several times now, but there's a waiting list.  I believe the wait is over a year long, so I need to schedule a tour and see if it feels like a fit for us.  This now goes on tomorrow's list.

And among my small tasks I managed to accomplish was grocery shopping.  We are stocked up on food and supplies should we get iced in.  Lxkas got to ride in the back of the cart while Clara was perched at the front in her car seat.  It was difficult keeping my eye on him as her car seat blocked him from my view and he wanted to open everything that went in with him.  The Reeses Puffs got hit a little hard, the eggs spilled once (but by a miracle none broke) and the pork chops have a finger pinch, but he didn't break the wrap.  I wish I had taken pictures, but in my pure frustration and non-enjoyment it didn't occur to me.

Oh, and now I have excellent news!  Sxylar just came home from school and brought in the mail.  One is a package--the baby sling!  Now I feel a renewed interest in venturing out with the tinies again. Part of my evening will be spent practicing it's use.

I really didn't have anything to blog about.  Mainly, I just needed to sit down and thought I would say a quick "hello."  Everything is fine again and I can smile.

Lxkas was the baby for 21 months.  While I was pregnant with Clara we would often wonder, "How is Lxkas going to take not being the baby anymore?"  But with everything that was going on with Clara it didn't really get much more thought than the initial wonder.

Though I absolutely love this photo  (taken by his aunt with my camera) it also leaves me with a sense of sadness.  I wonder how much he actually realizes in the moment this photo was snapped.  He looks settled into that stance, drinking his sippy, hand in pocket with thoughts running through his head as the nurse tends to this tiny creature he's never before seen.  What were those thoughts?  Does he realize his reign as the baby has come to an abrupt end?  I doubt it, but he does know that something has changed.  Suddenly, there is a tinier person and that person is front and center getting an awful lot of attention from everyone he loves.  And he is suddenly watching.

 

The above photos were taken at the children's hospital when we were there to get Clara's blood drawn.  Her pediatrician didn't want to do it in his office because when she was born the nurses struggled to get blood from her tiny veins.  Anyway, the children's hospital had toys in every waiting area and every office.  Though we were there for Clara he got to have all the fun.

I don't think the appearance of Clara has been devastatingly traumatic to him, but there have been some mood changes.  And why wouldn't there be?  He's not old enough to understand what has happened.  I think losing the title of "baby" would be rough enough, but to lose it to someone who has consumed Mommy's thoughts with stress, worry and a range of emotions for the past several months really has to be tough.  And the time she has suddenly taken from him--I can't hold him whenever he asks anymore, because sometimes I am soothing or feeding his little sister.  He cries because he doesn't understand this.  Juggling the babies has become a rough routine in my day and I hate to admit this, but Clara usually wins for the attention.

I had wanted to have Lxkas potty-trained before Clara got here, and the weekend I had planned to start I was put into the hospital, and then on my release I was put on bed rest.  So, I thought about starting when I brought Clara home, but then I read it is best not to start with the arrival of a new sibling.  I thought about it and realized that would have been rough.  Not only are you not the baby, but I'm kicking you out of your diapers as well.  Grow up!

I have to give him credit, though.  He's an emotionally tough little man.  He insists on kissing her goodnight every night before he goes to bed and he asks about her as I tuck him in.  He knows she is staying up with Mommy and Daddy, yet he makes himself care anyway.  And when we were at the children's hospital getting her blood drawn, as she cried because those technicians (also) had a hard time finding veins to draw blood, he cried in sympathy, insisting that I hold him so he could see what was happening.  I do believe he loves her.

But he's a monster in the bath.  It's easier for me to bathe them together (as you can imagine), so while he is playing with his ducks I grab her from her crib and give her a quick scrubbing in the same tub and if she's lucky, she gets out without being splashed by her littlest big brother.  This rarely happens.


I think my oldest daughter went through something similar when Lxkas was born, though she was 15 and learned to deal with it on her own.  She made the comment to him the other day, "Now you know how I felt."  Until then I hadn't given much thought about the impact of him coming into the family had on her.

Though there's not a lot I can do about it right now while Clara is so little and breastfeeding, I am aware of the difficulty her arrival has had on him.  I make it a point to give him undivided attention when I can, but it hurts during those times when I can't.  I'm starting to accept that throughout life children will simply continue to break their parent's hearts, no matter how small the issue.

"You know she's rare," I said.
"How's that?" Cxdy asked.
"She has 47 chromosomes."  I smiled as I looked at her cuddled in my arms.  "It's pretty amazing when you think about it," I continued.  "That extra chromosome can change so many things; It's pretty unpredictable.  Do you think it goes against nature?  Or do you think nature does this for a reason?"
"I don't know," Cxdy answered.  "I never thought about it.  I mean I think about it, but not like that."

I think about it a lot and in so many ways.  When I look at Clara, I can't see the trisomy 21.  She seems so normal to me.  When she's awake, she appears to be very alert and curious of her surroundings, and I have a difficult time believing she's going to be, or is already, intellectually challenged, though I know I need to accept it, and I think I have.

And I wonder what else that extra chromosome has in store for us.  We know that she has a hole in her heart between two chambers, but that's about the extent of my knowledge on her ASD.  She has an appointment with a pediatric cardiologist on the 14th and I've decided that it won't do any of us any good to do any worrying about it until we find out more.  If it was serious she wouldn't be home with us.

This morning her sister asked me if babies started crawling at 3 months.  I told her it was more like 7 months, but that we should expect it to happen later than that with Clara.  It feels odd to automatically lower your expectations of one child.   But, then I told myself that I need to look at it like I'm changing my expectations, not lowering them.  Clara is different.  That is all.  And to me she is still amazing.  That extra chromosome could sprout beautiful butterfly wings from Clara and I would be impressed, but not surprised.

I just received a text from Cxdy.  It read:  "How has your morning been?"

I was a little surprised at the honesty of my response because I always like to make everything seem easy and stress-free, and I've never been the type to complain about my children.  I love having children.  My response was:  "Taking care of babies and trying to find time for me.  How is yours?"

My response isn't necessarily negative, but I do feel like these days I can't get anything done that I might enjoy.  Right now I can't paint, I can barely find time to write in this blog, and by the time I can get dressed and out of my pajamas it is always almost lunch time.  I keep wondering how I'm going to ever get out of the house with two babies in tow (why did I not think of this several months back?), and I think I found my solution in a baby sling.  I can't wait for it to come in so I can escape this prison--with little ones, of course.

Think about it: How do you carry two babies into a store?  How do you fit two babies into one shopping cart?    How do you chase down the bigger baby while the smaller baby is in the shopping cart?  With the sling, Lukas can still sit in the shopping cart and Clara can snuggle warmly against me, which is her favorite place to be anyway.

Clara is a very bossy little girl, which I did not expect.  I kept reading comments from experienced moms of children with Down syndrome that their child was easier to care for than their children with 46 chromosomes.  I feel duped.  She is just like my others, and just like Lukas, in that she doesn't want to sleep in her crib, she always wants to snuggle (I have to fool her with warm blankets to catch a break) and she just loves the breast.  She wasn't feeding well with bottles but it was easier to make her eat and track how much she was eating which I had to do because of her jaundice.  Once the doctor gave her the all-clear I switched to breast and she's been eating like a champion ever since.

And just as an example of the difficulties of finding "me time," I had to walk away from writing as Lukas just brought me his diaper, in the nude, and Clara was crying for Mommy-Clara time.  Lxkas is now fully dressed and Clara is wrapped tightly in her nana blanket checking her surroundings.

My complaint about "me time" is just me wanting to complain.  I love the babies.  I love having two of them.  I love that I was given this last chance to raise children and enjoy it more than I did the first time around.  There will be days to paint.  Clara won't always be a demanding infant. And if I have to, I can paint, go shopping and clean house with her in that new sling when it comes in (ordered through amazon.com).

***

I've been noticing that Down syndrome makes the news a lot.  I'm assuming this isn't a new phenomenon, but that I am just now noticing it because it is of interest to me.  Usually it's a feel good story about a kid becoming homecoming queen or a team captain getting to play basketball during an important game, but now and then there are bad stories, like this one.  This is a horribly tragic and sad story, but it also makes me angry.  I was surprised to read that the officers involved are still on duty.  I feel that if the person who had lost their life hadn't been disabled then likely those officers would be suspended pending investigation.  Of course, I don't know the whole story, and perhaps there is more that would lead me to the answers of why these officers weren't suspended, but anger is my first reaction and I hate to think that one life is worth less than others to our civil authorities due to intellectual ability.

***

Clara's crying.  I believe we need to snuggle now.

One week ago today I was sitting in a hospital bed awaiting the arrival of my youngest--a sweet daughter.  Earlier the previous day the perinatologist had decided it was time.  I was to be induced on Sunday but she felt we couldn't wait any longer.  So, that Thursday afternoon I re-packed my bags and checked in at the hospital and anxiously waited.  It was shortly after 1 pm.   By 3 pm I was settled into a delivery room and they were pumping me full of labor inducing drugs.  

I was scared.  I didn't feel emotionally prepared for this and labor was very slow to come on.  The contractions were there, but I wasn't dilating.  Around 5 pm the nurse came in and told me the doctor wanted to go ahead and break my water.  I started to panic and wanted to make sure there was an anesthesiologist available to give me an epidural.  I've given birth 4 times prior and never had an epidural.  This was my last child; labor was an awful experience pain-wise; I wanted to know what it was like without pain.  Not too much to ask, I hoped--except that the last 2 times I'd given birth I was also supposed to have an epidural and by the time the anesthesiologist showed up it was too late. 

The nurse said it was too soon for an epidural and I told her I felt it was too soon to break my water.  The on-staff physician looked hesitant to break my water as well, but promised he would give it a try.  I declined, and although it was what my doctor had ordered, I could tell they were both relieved.  An hour later my doctor showed up, checked me and agreed:  It was too early.  Phew!  I wasn't ready for this.  Just that morning I thought I still had 3 more days!  Give me time to catch myself, please!

I was a terrible patient.  

By 8 pm things started progressing.  I was dilated to a 2 and one of my doctor's associates was there to break my water.  It wasn't so bad, and they even had the anesthesiologist on hand to give me my epidural, because they believed me when I promised them this show was going to move fast once my water was broke.  I'd done this 4 times before, and my doctor agreed with me.  He expected to be called in shortly after. In receiving my epidural I felt that I had won some sort of trophy.  Finally, I would deliver pain-free!

By noon the next day (Friday) I was so tired of being in labor.  Both of our families had been there the night before waiting, believing if they weren't there that night they were going to miss it.  By midnight everyone had gone home tired and disappointed.  I didn't sleep at all.  So that day I took brief naps where I could (when there wasn't a nurse, tech, or doctor messing with me).  By late afternoon the 24 hour labor was starting to take it's toll on me, and my body's resistance to the epidural was building up.

I had screwed up.  I shouldn't have had the epidural procedure so early.  I should have waited.  

I told everyone I didn't want company because by now I was leaking fluids, had almost no sleep, hadn't had a shower and I was breaking emotionally.  However, Cxdy's mom showed up anyway to sit in the waiting area.  I told Cxdy to go ahead and bring her into the room because I couldn't stand the thought of her sitting out there alone.

By 4 pm I had dilated to a 5.  At 6 pm I was still a 5.  I was beginning to wonder if this was going to end in a c-section.  If that's what it took to get it over with then I was for it because the pain was starting to get to me.    My doctor let the staff know he was going to wait it out with me and told me he thought we'd see some action in the next couple of hours.  The anesthesiologist had returned twice by this time to give me drugs to help with the immediate pain.  Unfortunately, whatever he was shooting into my epidural tubing was only lasting about 15 minutes.

I was relieved to finally get some alone time when everyone went to eat dinner some time after 7 pm.  I think I needed this, because as I relaxed the labor started coming on stronger.  Shortly before 8 pm the nurse checked on me and was surprised to find I was dilated to an 8.  She asked another nurse to call for the doctor, who had been hanging around waiting for me.  She walked out and came back in and I heard her say something about the baby's heartbeat as she put an oxygen mask on my face.  

Cxdy popped his head in to check on me and I broke down crying.  I think I freaked him out because he looked scared, but the nurse re-assured him we were fine when she could see nothing was going to come out of my mouth.  I was a pitiful pile of mess.  

The anesthesiologist showed up again somewhere around this time offering me a new epidural.  I told him there wasn't time and I wanted the quick fix again; but he argued back that it had only lasted 15 minutes for me before; to which I responded 15 was all I needed.  He got me the quick fix against his better judgment. 

The nurse was in the process of getting me to switch positions when a very strong contraction came on and I felt the baby slide down the birth canal.  I asked her if it was possible to feel this and she couldn't say that it wasn't.  I told her she had better check me again and she did.  I asked her what my dilation was and she was surprised to tell me I was ready.  Then it was my turn to scare her:  I told her if she didn't get the doctor in here she was going to be delivering this baby herself.  I could see in her face that she believed me as she picked up the phone to call for the doctor herself. 

The doctor and a room full of other people were suddenly there and they pulled up the stirrups.  By that time my body had gone numb as I had wanted, except that I couldn't even feel the pressure of the contractions anymore.  I remembered reading of women pushing for hours because they couldn't feel their bodies (Oh, God!  Please don't let that happen to me!).

The doctor told me to push.  One long push and she was out.  And she cried.  And I fell in love. 

I didn't think much about the Down syndrome while I was in labor, except knowing that I had accepted it.  I don't remember who it was, but one of the hospital staff, a female, had come into my room and mentioned that Down syndrome was suspected.  My response to her was: "We have accepted that she has Down syndrome."  I was trying not to leave open any windows of hope.  I didn't want to be disappointed.  

She hasn't disappointed me.  

Her pediatrician called me yesterday to let me know her karyotype had come back.  It confirmed her diagnosis of trisomy 21. My response was, "Well, we knew that."  But even as I stated it, it was somewhat hard to hear it. Was I still hoping for a different result even though all the signs tell me otherwise?  She has the space between her toes, and I can see it in her eyes.  Her dad says he sees it in her nose.  And I can see it in her profile.  The pediatrician told me during her first visit on Tuesday that both her humerus were short. And she has a minor heart issue. I knew she had Down syndrome, but I didn't want to hear it confirmed.

I look at her and I see how beautiful she is.  Could she have been so pretty without that extra chromosome? Or would she have been even more beautiful?  I just know that she is the most beautiful baby I've given birth, no offense to her siblings. 

How can I love a baby so much that others would find repulsive?  I'm having a hard time coming to grips with the statistics that tell the majority of parents wouldn't want her.  Because she's amazing.  

I don't hesitate to believe that I will happily be by her side all through her growing years, and then some.  My biggest concern is who will look out for her when I'm gone. 

Lxkas's toddler bed still isn't here.  It would seem that it is lost.  The freight company is supposed to be locating it.  If I don't hear back from them by this afternoon I'll call Amazon and see if they can send another bed through a different freight company.  We need that bed!

*

Some of the things that Lxkas unintentionally does just amaze me.  There is a show on PBS called Signing Time and it's a half hour of learning sign language.  He absolutely loves that show, but I wasn't sure if he was learning anything.  I thought I would see him moving his hands but I couldn't be positive he was trying to sign.  Then last week he turned around and looked at me and said "book"; and at the same time he signed book.  I repeated it and signed back and he could see the joy on my face because every time he says book now he also signs it.  Unfortunately, the show comes on when he is usually ready for a nap so I'm going to have to see if Netflix has it.

As you may know (but may not), a lot of children with Down syndrome will learn sign language before they learn to speak, so this is actually important to us.  I don't know a lot of sign language either, so I tend to pay attention during Signing Time as well.  Hey, we've got book down!

*

There is a forum I visit and someone there had mentioned that they had sent educating Down syndrome links to family and friends after receiving the diagnosis so they could learn about the disability as well; and then they expressed disappointment when those family members and friends didn't even look at the links.  I had done the same thing, and I was surprised when I realized they didn't feel the way I did, which was to know and understand everything I could.  But then, if you aren't the parents, I guess understanding the condition isn't really your problem and there are better things to do, right?

I don't have bad feelings about this because I get it.  But I think this also explains to me why there are a ton of parents of children with Down syndrome out there blogging--because there are people to reach out to, though they may not be family and friends--and these families have networked out of necessity for support.  I have been amazed to find such an intelligent and knowledgeable online community with members who are waiting to support and assist other parents who may be new to this.  And I am learning from those people, and so grateful they take the time to share their discoveries.

*

Oh, and guess what?  Clara will be here in 4 days.  Mommy is starting to get restless.  I barely slept last night.

This week has us in total preparation mode.  We have less than a week now to get everything ready for Clara.  One of the items on our list was getting Lxkas a new toddler bed so Clara can take his crib.  I found the cutest bed on Amazon, and it was scheduled to arrive today before 6 pm.  It's now 6:36 and there is no bed.  Perhaps there will be one more night in the crib for the big brother.

This is also the last week of doctor appointments for me.  I have three this week: two with the perinatologist to monitor Clara (one of which was this afternoon), and one with the OB on Friday so he can have one last look at me before I deliver on Sunday. 

Yes, we are scheduled to induce labor on Sunday at 5 am--just three weeks early.  Well, that's a lot better than it could have been.  And honestly, I'm going to feel better about her health once she is out.  I constantly worry that the umbilical cord isn't getting her what she needs (motherly paranoia, I'm sure). 

Anyway, everything looked fine today at the perinatologists, except that the cord doppler is still reading a bit high, but I guess it's in the acceptable range. 

On the way downtown I heard Phil Phillips song "Home" on the radio.  Every time it comes on it reminds me of Clara.  And me.  It reminds me of us.  And I am an awful hormonal mess because it had me in tears.  Gah.