Hoping for Hope

Hope is following her usual pattern and looking better today.  I gave her morning meds very, very slowly and then set up the pump to deliver a steady (but slow) drip of water into her stomach.  She is sooo dehydrated right now.  Now, we wait for a wet diaper and then I'll breath easily again.

I told Alex yesterday, that Hope seems smaller.  It looks to me, like she has shrunk (he laughed at me).  Her cute little head seems smaller, her rib cage is sunken in and her limbs are loosing that nice plump look.  Of course, that makes sense with all that she's been through since Christmas.  I don't like this 'fading away', and I'm still hoping that I can get her to tolerate more food so that I can 'plump' her up again.  Hoping for Hope, that's what I'm doing.  Hoping that I'm wrong about this downhill spiral.

It's so nice and quiet in the house today.  I have had my cuddles with Hope and Mira.  Brodie is off to school with his 'vehicle' that he made for his science project.  Music is playing and I have time to think and pray.  It is a good day.

Mira is starting to sit up.  Her favorite thing to do is slap at things.  She is not a gentle girl.  She's got some power to her.  I can see already that we'll have fun getting to know her as her personality comes out.  Mira had some help learning to sit, from her cousin Teagan who is a very polite and smiley little role model...

A good week until...

We had a GREAT week.  Hope was smiling, she tolerated her full volume of formula and she enjoyed all her daily activities.  Friday was Brodie's chapel at school and Hope was able to come with me for that too.  Our respite worker, Ashley J. was along to help...thankfully.  Then Hope had a little 'puke' on Friday night...and I tried to ignore it.  That didn't really happen...right?  Saturday she seemed fine, so we continued with her normal routine, until 5pm when she started puking up buckets of formula which was not digested at all.  Her stomach is not working again!  Luckily, we always have her situated for potential puking (as you can see in the photo above), so we only had a little mess.

Today Hope is looking pretty bad.  Her eyes are puffy, with purple bags underneith from all the heaving.  She's seizing constantly from lack of seizure meds, and she's still vomitting up some blood-tinged emesis.  Yep, that's depressing.  It doesn't matter how many times we see this, it is still awful.

I know it's taken me a while to post, and I'm sorry that you might have been wondering how Hope is.  Thank you so much, for caring enough to wonder about us.  I was going a little crazy this week.  I even had a few moments of panic when the workload felt like too much and I messed up a couple appointments.  I started wondering if this is what grief does to a person.  I wondered if maybe my brain was becoming resistant to the constant pressure and it wasn't going to work anymore.

After much consideration and a lot of venting, I realized what the actual problem is.  I can't handle any external pressure!  I CAN take care of my kids and even my house (if I want to), but I can't take care of anyone else (no coffee dates, no showers, no visiting, no parties, no planning ahead).  And of course, no one expects me too!  We may be feeling 'okay', as I told you but we still need to take time to walk this road of grieving and deal with the moments that come.  So, as of now, I am letting everyone know that I am taking it one day at a time ( because letting people know this, makes me feel better about saying 'no').  I need to feel what each day brings.  If I decide on a particular day that I feel like a visit, then I may say 'yes' to a friend, but I can't plan ahead and have that pressure to show up and ignore what I really need. 

The days when I need to be home alone with my children are coming more often now, and I think it's because Hope is so unstable.  I don't feel like we have a lot of time left with her, and I know you'll understand that.  I'm not going to guess at a time-line, but I will go with my instincts which tell me to concentrate on my family (and even myself) right now. 

Yeah, Hopey!

Yeah, Hopey...you are finally looking a lot better.  Hope was able to enjoy cuddles and sitting up in her KidKart yesterday, for the first time in weeks.  It has taken her 3 1/2 weeks to recover from the latest vomitting episode and I am so glad she didn't follow Ashley's lead!  It has definitely been a sobering thought, that we might lose both girls in such a short time.  We've been slowly moving out some of Ashley's stuff, which hasn't been as bad as you might imagine, but it would be horrible if we were giving up everything for both girls. 

It might be helpful for people to know that we really are OKAY.  Yes, losing a child is a very hard thing, and we will be dealing with this loss for years.  But we have also been grieving in small doses, for six years, which gave us time to love Ashley and accept her limited time with us.  Nothing was taken for granted and each year was cherished.  So, right now I will tell you that we are feeling fine...but I will reserve the right to change that sentiment in the future.   I just have no idea how I will feel in the months to come.  So, if I start crying for some reason...months or years down the road...I'll trust that you will remember that grieving is not predictable.  Also, it's okay that you may not know what to say to us, because we don't know what to say back!  A hug is always safe.

Now, back to the normal stuff.  We celebrated the beautiful weather yesterday by hosting some of the neighbourhood kids.  You can see Brodie in his Calgary Flames jersey below.  Mira was mesmerized by the hockey game in our driveway!

This morning we went to church and Hope slept through the whole service, but she looked cute anyway!  When we got home, we got her into position for some tummy time and Brodie promptly scooted in to cuddle with her.  He's such a great kid.

Thank you SO MUCH, to those who sent food (but we don't need anymore).  I had no idea how much work and decision making was involved with funeral planning.  The food that came after Ashley died was an incredible help and more than that, it was such a treat.  It was all so, so tasty and I definitely think food is a comfort.  I had no time or energy for meal planning or prep, so it may have been a KD week otherwise.

Just one more 'Thank You'.  We have recieved many e-card notices when donations were made to RCC in Ashley's name and this is appreciated and applauded.  Thank you so much!

Little smiles

Hope woke up this afternoon and has been giving us some smiles as we cuddle her.  She's not throwing up today, and she's having some wet diapers.  We haven't gotten her feedings back to normal yet, so we'll keep working on that.

Oh Hopey!

Oh, Hopey...why can't you just be better?  Last night we had wonderful smiles and cuddles and even some 'coos' from Hope.  She was just wonderful to hold.  This morning we found a puddle of blood-tinged puke to clean up and Hope struggling with secretions.  She has barely woken up today, and she only had one wet diaper, but don't worry she's been breathing very peacefully for the rest of the day.  It seems like we're one step forward and a couple steps back these days.

Today I went to a funeral for Joel.  Joel is the 2 year old son of my friend, Karen, who's blog you can see in the sidebar.  Joel died on the day of Ashley's funeral.  Now, Karen and I have even more in common and we will be walking this journey together for years to come.  This isn't a sad statement, it's a statement of wonder!  How blessed am I, to have a friend who understands my unique journey, and who's journey I can understand in turn?  The timing of us meeting just a little while ago, speaks of God's hand at work.  See how your prayers for us have been heard?

A better day

We made it to church today.  I had to suction Hope on the way there, and on the way back.  She is still coughing up a lot of secretions, but she has not had a fever today.  Hope slept most of the afternoon, and then woke up to give us some very sweet smiles this evening.  Maybe she is getting better.

Tommorrow

Last night we were horrified when Hope started vomitting again.  She hasn't recovered from her last episode and I just can't imagine how she can go through it again right now.  But today, we were able to get her meds and water into her very, very slowly and she didn't throw up.  She didn't have a fever today (she did last night), and she slept most of the day. 

She has been very peaceful...maybe too peaceful.  Her skin is so pale and she doesn't wake up very much.  When she does open her eyes, she closes them soon after.  Her breathing seems shallow, but I am hyper-sensitive...so who knows if it is actually different than normal.  At least she isn't vomitting.

Tommorrow is Sunday.  We will try to go to church if Hope is able to travel.  Of course, this means we will be experiencing our first Sunday morning without Ashley.  Sunday Mass was the one thing we always did together.  The girls always came with us, unless they were very sick, or at respite.  Anyway, it just hit me that I only have to get three kids ready for church tommorrow.