Sunday, 29 July 2012

Would you?

The golden question, "would you like to give $1 to..."  I used to get very annoyed each time I was asked this question while I was shopping.  I felt like a terrible person if I said no, yet sometimes I wasn't passionate about the charity they were requesting donations for.  If they caught me on a good day, I would usually jump in.  Things have changed and I'm losing more loonies every day.  Now that my own child is a recipient of so many charities; The Ronald McDonald House, The Alberta Children's Hospital Foundation, The Stollery, Make a Wish Foundation and many more, I can no longer say no.  My entire attitude has changed and I wonder how much more these charities could have done if I'd been less stingy and parted with my loonie.  I'm sure I wouldn't have noticed at the end of the year.  I think it's time to get my first tattoo, SUCKER written across my forehead!  The cashiers should know that I'm an easy target before they even ask.

Sadie's Curious George birthday party was a total success and the weather was very obedient.  She had an incredible time and we were blessed to spend the afternoon with good friends as well.  Sadie was beyond spoiled, she was happy after the first present and didn't even finish opening all her gifts.  It's hard to believe our little girl is going to be 2 on Tuesday, where has all the time gone?  We look forward to being at this very stage with Hope.

One of our biggest prayer needs this week is for Hope's friend Holly.  She was officially put on the heart transplant list on Friday, this is now her only option.  Please join us in praying for a donor for Holly, that one would be found and quickly.  This is a difficult road and they will need a lot of support, when you think of Hope, remember Holly too.

Tomorrow morning Hope and I will be back at the hospital.  She's having her blood thinner levels tested and meeting with the rehabilitation centre.  We should have some answers about Hope's right thumb after our meeting with them.  We have noticed some improvement and are hoping they won't need to splint her thumb.

Thank you for continuing to care.


Saturday, 28 July 2012

Sadie's Birthday Party

Thank you to everyone who prayed...we had perfect weather for the party!!

Friday, 27 July 2012

Respite Relief

I was pretty excited this week to have only one appointment at the hospital.  I got a call on Wednesday and found out I had another one.  On Thursday I went over to the Rotary Flames House to meet with a nurse and doctor on site.  The Rotary Flames House is located directly in front of the children's hospital and is for children with life threatening or life altering illnesses.  Hope has been accepted into their program, this allows us to have 30 nights of respite care through them.  It works a lot differently than the current care we receive through Shawn's insurance.  Our coverage through the Rotary Flames House allows us to drop Hope off at the house to be cared for on site.  It's a lot like a hospital, but more comfortable and home like.  We are able to stay there with her as a family or leave her on her own.  I'm not sure how well I'd do leaving her.  She is so familiar with us now and would wonder where we were if we left her.  It is a blessing that we even have the opportunity to use these services.  If we ever needed to go somewhere for a wedding or family emergency, the house would allow us these freedoms.

We plan to use this opportunity to take Sadie away for a night and focus on her completely.  Knowing that Hope is well cared for and not alone will make this more enjoyable for us all.  We plan to go to the house as a family to get a break from Hope's medical care.  We can spend time as a family, but not have to worry about the medical portion of Hope's care.  I'm sure we won't be able to utilize this program for too long, once Hope is no longer tube fed and has had her Glenn, we won't need this type of assistance any longer.  I'm looking forward to that stage in our journey with Hope!

Tomorrow is Sadie's 2nd birthday party and the weather looks like it's going to be beautiful!  Thank you to everyone that has been praying for nice weather for us.  Sadie has been loving having her cousins in town and has gotten a lot of attention.  Even Hope has cried less, she truly enjoys watching all the kids play.  I'm sure Sadie's party will be a highlight for her.  I'm excited to spend a day just focused on her, it doesn't happen too often right now.  We have hired a nurse to watch Hope, the party in the backyard is not a safe environment for her.

Next week is a little crazy, we have 4 appointments at the hospital!  It will be a tough week with Sadie, but also with Hope's schedule and all of her appointments.  I find weeks like this one coming up to be very hard.  I'm not able to spend a lot of time with Sadie and am constantly running out the door.  We are hoping to finally get an official MRI date, no word on whether or not that will happen yet.  Please hold our family up in prayer as we head into a really busy week that will require a lot of patience.

Monday, 23 July 2012

Wonderful Weekends!

I'm not even sure you'll believe how incredible our weekend was.  It's going to sound like we have a lot of friends that are nurses - this is not true.  The ones we do have, though, are simply fantastic and have been too kind to our family.

On Friday night, we were blessed with a nurse that came to watch Hope AND Sadie.  I'm not sure she realized what she was in for when she offered to take them both on her own.  She was still alive when we got home, but she sure did look tired and happy to have Sadie off in bed!  Shawn and I went downtown to the park and watched 'Shakespeare in the Park'.  We had always wanted to go, but never got around to it each summer.  We had an incredible time and felt like we were dating again, sitting on our blanket to watch the play and then walking around the park and eating ice cream when it finished.  Then, to top off our night...we had our lovely night nurse and got to sleep through the night!

On Saturday another nurse friend offered to come and watch the girls so we could go see a movie.  How can you turn down an offer like that?  We put Sadie to bed a bit early, handed over Hope's care and went to see the new Batman movie.  I felt eerie as we left the theatre and I thought about all the people who went to see the same movie in Colorado and never left.  I can't imagine the pain their families are going through and I do pray for them. (side note) After the movie we came back to the house and continued to talk about our weekend with two date nights!

On Sunday morning we had our Friday date night nurse back and we were able to take Sadie to church.  In the afternoon I was able to sneak away for a pedicure with a friend while Shawn and his parents managed the girls.  They even put together the new toy shelf and started some redecorating in the basement.  We also had our lovely night nurse back that evening.  Two nights of incredible sleep and two dates, I can't imagine a more lovely weekend!  Hope was so happy on Sunday and was all smiles for us.  It was a great time as a family and we truly cherish the time we get to spend together.

Today I took Hope for an audiology appointment at the hospital.  I am very happy to tell you that her hearing was perfect.  They didn't see any problems with it and her brain registered all the sounds exactly as it should.  We celebrate these victories as they come and know that there could be so many challenges in this journey that we have been spared from experiencing.

Tomorrow my sister and her kids arrive in Calgary to spend a few days with us.  I'm really excited for Sadie to have the company of her cousins and the luxury of going on adventures with them.  I know that I'll have to miss a lot of fun as Hope won't be able to go along, but I'll be happy to know that Sadie will be all smiles!  Please pray that everyone stays healthy, as I would hate for our visit to be cut short because someone gets sick and has to be isolated from Hope.  Pray also for some sunshine this weekend.  I always enjoy nice weather, but this weekend is Sadie's birthday party.  We wanted to have some people over to celebrate Sadie's birthday, but won't be able to have too many people in the house with Hope.  So, we've hired a nurse to be in the house with Hope and are hoping to have Sadie's party in the backyard.  If it rains, I'll have to cancel the party and rebook everything.  Please pray that it all works out and we can celebrate Sadie and the fact that she's TWO!

I also wanted to publicly thank everyone that made such an awesome weekend possible.  I walked around on cloud 9 and was amazed at how blessed we truly are.  The kindness of others has made me speechless at times  That's a big statement from a woman with a lot of words!  God has been so good to us and we believe that although this journey with Hope can be really tough, we do get breaks from the craziness.  During those breaks, we are reminded that God is looking out for us and is taking care of everything.

Thursday, 19 July 2012

Heart Buddies

This journey can be isolating at times, but it has also brought many new relationships into my life.  As I've mentioned before, we became really close with a couple of families at the Ronald McDonald House and entered the world of heart babies together.  Sadly, we had to say goodbye to little Lincoln and we continue to think about him daily.  As you meet families and become close, you love their children and ache for them as though you've known them for years.

Little Holly is back up in Edmonton and not doing as well as we all hoped she would.  Holly has HLHS - the same heart condition as Hope.  At this point, it looks like Holly's heart is not functioning very well and they are discussing the options for their next step.  They have talked about the possibility of her needing a transplant now.  Please join us in praying for Holly and her incredible family.  I have already started praying that if Holly needs a transplant, God would provide a donor quickly.  It feels like the oddest thing to pray, and yet I know I will likely be praying the same prayer over our little Hope one day.  This is a tough road and it comes with many tears.  I've had a headache all day, likely from crying along with our friends and wishing I had the ability to make everything better.

As for Hope, she seems happier when she's in the hospital.  Now that we're home, she has stopped taking anything from a bottle completely!  The last few days have involved a great deal of crying on her part and an extreme level of high maintenance.  She wants to be held and bounced constantly.  Today the batteries on the swing died and it was like the world was ending in our home.  Without our swing, vibrating chair and vibrating basinet, I think our arms would go numb from the constant bouncing and jiggling as we carry Hope around trying to settle her.

The stridor is still very loud at times.  I spoke with the ENT specialist yesterday and he said that it will likely stay that way for quite awhile.  Until Hope's floppy voice box is repaired, or repairs itself, she will continue to have the very raspy breathing.  It stresses me out and makes me sleep less deeply and worry more for our little girl.  She sounds like she can't breath often and I panic.   Thankfully, the ENT doctors are wonderful and never seem annoyed with my constant phone calls for reassurance.

Today we finally got around to getting Hope's 2 month vaccinations done.  She hated every second of it and I nearly had a breakdown.  I always try very hard to look like I'm doing well when I'm in a public health office.  I worry they'll lock me up and make me go through some parenting courses on being cool, calm and collected.  My friends work hard to make sure I'm not alone with both girls during the day, but some days it just doesn't work out though.  This morning I was on my own and it was not pretty.  Sadie trashed the health nurses' office and Hope lost at least a few hundred calories with her screams.  They were trying to figure out the protocol for giving Hope the injections with her high level of blood thinners.  Eventually I got upset and told them what the protocol was going to be and that it better hurry up!  I think the nurse could tell that I was about to lose it  and moved things along a little faster.  When we left I felt like I needed to drive to a retreat centre to recover from the 1 hour appointment.

I'm learning to stay away from things that make this more difficult.  For example, I hate pumping.  It feels like the biggest burden and it stresses me out as my milk levels continue to decrease.  I used to feel terrible if Hope ate more than I had pumped in a day.  It completely drains me and makes everything more difficult.  Now I try to look at it all more positively.  Each time I pump, I have one more feed that Hope can have.  I still have a lot of milk in the freezer and we won't run out anytime soon.  My goal is still to make it to the second surgery before switching her over to formula.  She is doing really well with her digestion and I have to believe that if I dry up and we run out of our back stock, God will give her the enzymes she needs to keep down her feeds.

Hope is not gaining weight currently.  It's likely from all the crying she's been doing lately!  She's still over 10 pounds, but hovers between 10.2 and 10.4.  She doesn't seem to be able to make that jump to 10.5 right now.  Please pray that she will continue to gain weight, learn to eat orally and breath without too much effort.  Please also continue to lift up Lincoln's family as they walk through the terrible reality of losing a child, and Holly's family while they are back in the Edmonton PICU.  Life is truly a journey.  Some days are more bumpy than I enjoy.  I have learned to try and enjoy the beautiful things as they pass by though.  Each time I see Hope smile, I'm inspired to push through the next bump and keep on going.  With God's strength we continue on.....

Tuesday, 17 July 2012

Home, again.

I had hoped to write an update last night and fill everyone in, but I came home from the hospital completely exhausted and didn't have the energy to do much.  It's amazing how just being in the hospital can suck you dry.

Our visit to the hospital was pretty frustrating in a lot of areas.  Somehow they had a couple of Hope's meds in the computer incorrectly.  They would bring her meds into the room to administer to her, and I would notice that they were the wrong amounts.  It's a huge deal if you don't give Hope the right amount of blood thinners!  She was almost given the wrong breast milk and other times it appeared they were going to forget to bring her feed at all.  All that to say, I had to be on my toes the entire time we were there to make sure she got her meds and feeds at the right time and the correct amounts.

We had an echo done on Monday morning, Hope's heart function was still looking good.  This is the most important thing and we were pleased to hear this.  She still has clots and will continue on the blood thinners, we'll get a better idea of what's happening with the clots in Hope's MRI.  In the afternoon we were seen by ENT (Ears, Nose and Throat), the doctor did another scope of Hope's throat.

ENT discovered that Hope's left vocal chord is completely paralyzed and that she has Laryngomalacia (a collapsing voice box).  They believe that this is the cause of her stridor.  We still don't have a conclusion as to why it was suddenly worse on the weekend.  It could have been a bad case of reflux that brought on the increased stridor.  The doctors have switched her reflux meds in order to see if this will make an impact.  They are hoping that her voice box and vocal chord will repair themselves over the next year.  If this does not happen, she'll be taken in for surgery to attempt a repair on the voice box.  It's possible that her left vocal chord will be permanently paralyzed.

We're back at home with strict orders to return if she has another stridor episode.  Please pray that her breathing will be strong and consistent and we won't have to bring her back in.  ENT will take a look at Hope again next month and will see what's happening with everything.

The most positive part of this entire experience was Hope's oral feeds, they are getting better.  We tried a new nipple at the hospital, it has a faster flow than the ones we've been using at home.  Hope did so well with them and started taking 30mls a feed from these new nipples.  This was super encouraging, please pray we'll be able to maintain this success at home and get her taking more from the bottle as we practice.

Thank you for praying us through our hospital visit!

Sunday, 15 July 2012

Not so normal...

I'm beginning to realize that when I pretend to be normal for a day, I'm truly pretending.  On Saturday night, I was able to go to a friend's bachelorette party while Shawn graciously kept both girls on his own.  It was great to go out for dinner and hang out with some friends for a few hours.  I arrived home at 11pm and instantly, before getting through the door completely, could hear that Hope's breathing was loud and laboured.  She seemed to settle herself back to sleep and was quiet again so I went to bed.  I woke up at 3 to feed Hope and could still hear her breathing was a bit off.  I called the cardiologist and was told to bring Hope in.  My normal day was no longer normal.  It was back to the reality of Hope's fragile condition.

We walked into triage and were assessed briefly before being brought into a trauma room.  The room was quickly filled with medical personnel and Hope began receiving injections, vaporizations and other treatments for her breathing.  They were saying that she had developed Croup.  This is obviously frustrating, as we work so hard to keep her away from germs and she caught a virus anyway!  They kept her in the ER until 6am to observe her.  In the morning, the cardiologist called down and told them we were not able to leave and would need to be admitted.

Hope is now back on the unit.  We were greeted by nurses we'd had before and too many familiar faces. The wall in her room said, 'Welcome Back Hope' when I walked in.  We don't like being back in the hospital and it's obviously inconvenient.  At the same time though, we want Hope to be closely monitored and we are glad she's in a safe place and will receive proper care.

Since she's been admitted, the doctors don't agree on what she has.  It's definitely something respiratory, but whether it is Croup or not is under question.  This afternoon she received a scope that showed her left vocal chord is still damaged from her intubation, nothing else was visible though.  They are now looking to do a more invasive test that will involve Hope being sedated.  No word on when that will happen yet.  I came home for a nap this afternoon while Shawn stayed with Hope, I'll have to move back into the unit with Hope and needed to pick up some things from the house as I hadn't planned to be there overnight.

Please pray that the doctors would find the reason for Hope's laboured breathing quickly.  At this point her heart seems to be tolerating the extra work.  Pray that continues to be the case as well.  Please pray for our family as we walk through this 'bump' in the road as well.  The $60 we've spent on parking in the last 24 hours is not very exciting!  I walked into the cafeteria for breakfast and saw their Greek salad that I love, that was exciting!  There's always something we can be thankful for.  We also get free diapers in the hospital and nurses to change them!  Most importantly, Hope has maintained her weight and still appears to be growing, so we're praying this is a minor hiccup and will be resolved quickly.

Thank you for continuing to pray for Hope and think about our family as we walk through the ups and downs in her care.  It's amazing how quickly our friends spring into action.  I already received a text that dinner would be dropped off for tomorrow night and have had multiple offers from people to watch Sadie.  We wouldn't be able to get through these times without our incredible and loving network of friends and family, so truly thank you.

Thursday, 12 July 2012

Our Ten Pounder!

Today Hope weighed in at 10 pounds!   This was the required weight for the second surgery.  We won't have a surgery date until September, but she's heavy enough now.  In honour of Hope's incredible accomplishment, here are some pictures for you to enjoy.  Erika Blunt took these for our family, she's incredible!

Tuesday, 10 July 2012

Government Applications and Doctors Visits

Anyone who has been over at our house lately would tell you, 95% of the phone calls I receive are from the Government of Alberta or a doctor's office.  I seem to have an appointment to confirm, a test that needs to be ordered or something medically related to Hope that needs to be discussed daily.  It's literally a surprise if I see a phone number that I enjoy seeing show up these days!

Today, we got a call from the Government of Alberta.  Our application for assistance through FSCD has been processed.  Our case was presented to the committee this afternoon and they decided that we did qualify for care.  They will now send out a more detailed application that will be followed with a home visit.  If all goes well with these next steps, we should be accepted to receive care through this program.  Please join us in praying that everything will go smoothly and we will be accepted into the program.  We would have the potential to receive some respite care and also financial coverage for our costs during the second surgery in Edmonton.  Our case would be reassessed annually going forward and coverage would cease when Hope was considered to be more medically stable.

Hope had an appointment today with her pediatrician.   We had noticed that the thumb on her right hand was never moving and were also concerned with the blocked tear duct getting worse.  We now have a referral to see an ophthalmologist about her eye and a prescription for some cream to help the redness around the eye.  We also have a referral to have Hope's thumb looked at.  The doctor is hoping and assuming that it's just a comfort thing.  Hope likes to hold her hand that way and as a result it is pretty stiff and doesn't often move.  The worry is that if she doesn't start moving it, it will become very stiff and not be able to move.  We've been encouraged to move it ourselves and keep up the mobility as we wait for this referral to go through.  Please pray that it is purely a comfort habit of Hope's and not anything to do with her brain function.

Thank you for continuing to lift our family up in prayer.  Our journey with Hope is not over and although it seems long and tedious some days, we are thankful for the opportunity to walk with her through it all.  We know that her very life is a miracle and we can never take it for granted.

Sunday, 8 July 2012

Hot Days

The weather in Calgary has been beautiful!  We have had wonderful hot weather and sunshine for days and it is supposed to continue.  This is tough on Hope, she doesn't handle extreme hot or cold very well.  I keep her in hardly any clothing so I can still swaddle her, she likes a blanket on no matter how hot it gets.  She sleeps more than she usually does and you can tell her heart is working hard to cool down her body and make her more comfortable.  She had a long nap this afternoon with her Daddy and didn't make a sound, that's a deep sleep.

We are still just shy of the 10 pound mark.  As we work at the bottle feeding more, she burns more calories than she usually does.  As a result, our weight gain is a bit slower but still there.  We're hoping to make 10 pounds by the end of next week.

Hope has a really bad blocked tear duct.  Originally it would get pussy each morning but stay relatively clear all day.  It is now constantly pussy and is getting red around the outside of her eye as well.  We'll be seeing her peds doctor on Tuesday and are hoping they can refer us somewhere or give us something to help her.  She gets really upset when we clean it, I'm assuming that it's sore and bothering her if she's getting so upset.

Our wonderful night nurse returns for tonight and tomorrow.  It will be painful to wait the full 5 days before she comes back again!  We're trying to focus on enjoying these next two nights of sleep and not think about the lack of sleep that is coming!  It makes a huge difference to have those nights to catch up though, I can't believe we were functioning without them.   We are truly blessed to have help and are so thankful for the people that surround us.

Friday, 6 July 2012

Sleeping Beauty!

Last night I went to bed at 8pm and slept until 7:30 this morning.  It was glorious and I feel like I could run a marathon today, I won't bother though.  I think I need to get to bed that early at least once a week to keep myself going and catch up on sleep.

Today I closed the UPS mailbox we had been using.  If anyone is planning to mail something to us, please ask a friend for our address or Facebook one of us.  Hope notes had stopped coming there and I figured it was safe to discontinue it's use.

Tonight is date night, we have a nurse and babysitter coming over to watch the girls.  Shawn and I are going out for dinner and a movie, I can't remember the last time we did this.  I'm praying the girls are angels while we're gone and don't cause too much trouble!

Thursday, 5 July 2012

Unwanted House Guest??

Last night I walked into the house exhausted, I had a shower half asleep and crawled into bed.  I was really looking forward to sleeping through the night and wondered how I would have survived without the chance to sleep again.

At 1:30am we awoke to the nurse at our door asking for Shawn.  He takes a long time to wake up, so I was out of the room with her before he even opened his eyes.  We went to the door and she introduced me to some guy that was insisting the drunk woman he was attempting to deliver home lived at our house!  He was trying to safely return this intoxicated woman home and she believed she lived with us.  Once we established that this woman did not reside here or anywhere on the street, this guy got a little crazier.  He then asked if his drunk stranger could come in and sleep off her intoxication in my house.  I promptly informed him that that woman would not be setting foot in our home and he could drive her to the hospital instead.  He was really pushy and annoying, since I wanted to be sleeping, and only gave up when I told him that Hope had a heart condition.  I explained that his drunk friend could have been exposed to a million different germs and infections and that letting her in my home would be out of the question.  This seemed to convince him and he finally left.

Seriously?  How do these things happen to me when I am dying to sleep?  As soon as he left, Sadie called out from her room and was having some teething pain.  After she was down I figured I still had another 5 hours of good sleep left, wrong!  Hope woke up early and proceeded to cry from 5:30-7:00am and completely destroyed my sleep.  I'm not sure what's up with her but she's been fussy all day and not sleeping as much as I usually anticipate.  I'm hoping she's just getting tired so she can sleep all night and let us get some much needed sleep.  I plan to go to Wal-mart tonight to buy a loud fan, I won't hear anything tonight!

If you think of it, pray we get to sleep for 8 hours straight tonight and don't have any crazy visitors or crying children!

Wednesday, 4 July 2012

Our morning at the hospital...

Today was our morning of appointments at the hospital, although very busy, it is nice to have them all at once.  We don't enjoy how early they start, packing up two kids and all the gear we need is tough to do before 9am.  Today I started my drive to the hospital and thought, "I'm incredible, how did I manage to do all of this and not forget anything?"  Then I remembered I'd forgotten my binder with all of Hope's important papers, not so incredible!

Sadie goes to a program at the hospital that is run by volunteers.  They play with siblings of the patients to make it easier for the parents.  She LOVES the program and was thrilled to run in the door, she didn't care what Hope and I were doing or when we were coming back.  This makes our hospital visits a lot easier on everyone.  Unfortunately, they only had room for her until 10:45.  Thankfully we had a friend come and pick her up as I wasn't finished until 12:00.

Hope had an echo, an ECG, blood work, an appointment with the cardiologist, an appointment with the feeding clinic and an assessment with the nutritionist.  All that to say, it was a very busy morning with a lot of information exchanged.  Everything looked pretty good with the echo, her heart function is doing well, the valves are working correctly and her shunt is still pushing enough blood volume through it (although it is kinked in two places).  This means that she is a great candidate for the second surgery and they don't see any concerns at this point.  Her MRI in August will give a better picture to verify this information before surgery.

We are still having problems with the feeding tube and they are not able to give us any answers about why this is happening.  We have switched back to the short tubes, they seem to give us less trouble for some reason.  They are only 15" long, so they won't work when Hope gets any longer as they'll barely stick out of her nose at that point.  Hopefully we find a solution before we're facing that problem.

Oral feeds are still not going well, they're wondering if Hope has severe oral aversion and are discussing the possibility of starting her on solids at 4 months of age to work with this problem.  I guess we'll revisit that discussion in August when we're back.  She's still growing, but her growth has slowed down a bit and they have decided to up the volume she receives at each feed.  Please pray that her little tummy will tolerate this increase without too many vomit sessions.  Please also pray that I'll be able to keep up with her in my pumping and won't get too far behind as I work at continuing to keep her on breast milk to help her stomach.  I also need to find more time each day to practice her oral feeds, I guess I'll give up on showering to fit that in!

When I got home and was removing Hope from her carseat, her tube got stuck on one of the buckles and was pulled out of her nose.  To finish off her fun day, we had to insert a new tube.  She has been such a trooper today and deserves an ice cream...if she knew how to eat!

I know it sounds like things weren't that great, but that's a good visit for us!  They are pleased with Hope at this point, she's even in the 3rd percentile instead of the 2nd now for height and weight!  Hooray!  The cardiologist said that our second surgery should happen before Halloween.  That gives us a better idea of what we're looking at and we can plan to be in Edmonton at some point in the fall.  We should be given a specific date or better range at the beginning of September.

I'm meeting this week with a nurse that we're looking to hire privately to cover some of our day time needs.  Going through the nursing agency is much too expensive when the insurance company isn't paying the bill.  This will make it more manageable for our family and will give me a day every week or two to get things done and be free of all my Hope duties.  Other than loving her of course...I can't get away from that one!

Tonight our night nurse will be here and after 3 nights without her, my body is cheering for her return.  I'm exhausted and am more excited about sleeping through the night than I am about the cupcake in my freezer!  That shows you how much I missed my sleep, cupcakes are my favourite.

We continue to be blessed by the kindness of others and are reminded everyday that God is looking after us and using the people around us to spur us on and encourage us.  If I had been writing down all the acts of kindness, we would need a new book already.  How we will ever truly thank you all, I have no idea, we appreciate everything you do and wouldn't be functioning without you.

Monday, 2 July 2012

The 2am is back...

A 2am blog posting could only mean one thing...night feeds have returned to being our responsibility.  As a laid in bed tonight, looking over at Hope's face on the baby monitor, I realized that it was responsibility and not lack of sleep that was draining.  For the last 10 days we have slept soundly, knowing that Hope was safe and would be watched closely.  Tonight, for the first time in 10 days, she was my responsibility again and the weight of that made it difficult to sleep.

Going forward, we will have a night nurse twice a week, until our coverage runs out.  This will still be a huge blessing, but won't be quite as nice as every day coverage!  We have applied to a few programs to try and get some government coverage to give us another night or two.  The social worker has already told us that it would be nothing straight of a miracle if we were accepted.  Apparently, cardiac kids are almost always rejected.  Their condition is only seen as temporarily life altering.  After the surgeries are completed, they are expected to live a fairly normal life, and this fact disqualifies them from a lot of programs.

Sadie has been waking up in the night again.  Likely her two year molars giving us grief.  It's a little frustrating to be woken up when you know you won't be able to sleep through the night anyway.  Waking up for feeds does give me another opportunity to pump and will help me to keep up with Hope's demands.  I'm still finding pumping to be extremely daunting and am simply striving to make it to the next surgery before I pack it in.

We continue to function each week, purely based on the kindness of our friends that are helping us.  I am rarely alone with both girls.  I have no idea how I would function, maintain my sanity and properly care for them without the help.  Curious George is also an excellent babysitter in our home and is often on the tv!  Thank you for continuing to pray, please pray for us through this transition of night feeds returning.   It was a much needed break, but reality has returned and with it comes less sleep.