Thursday, 31 May 2012

At Home

That's right folks, we're still at home and were not re-admitted.  Praise the Lord!!  We've had a few issues with the feeding tube, but have been able to keep it in and continue to give her meds and feeds through it.  Please pray that this tube does not kink or get stuck against a wall again.  We like to have Hope at home, even with the sleepless nights!

Today a nurse came to the house to do our assessment for Shawn's insurance coverage at work.  She was pretty sure we would be approved, but we won't get an answer until next week.  We're hoping to be approved for at least a couple of nights each week.  I can't imagine sleeping for 8 hours straight at this point!  When I got up last night, I would sit in Hope's room and push snooze on my cell phone every five minutes.  I was actually falling asleep between the alarms!  That shows you how tired I was, as I couldn't stay awake for a full five minutes to watch the feeding tube.

Hope was pretty high maintenance today.  It's hard to get things done at times.  Shawn's mom spent the day at the house with me.  It allowed me to get some laundry done, organize the pile of mail on the counter and write some letters of my own.  It felt great to have a more 'normal' day.  Hope was wanting to be held most of the day, so Oma took a shift of cuddling while I did some house work during Sadie's nap.  I should have been sleeping, but eventually you do have to clean up your house.

This evening, as Hope slept next to me, I worked on her scrapbook of Hope notes.  We have almost 2 scrapbooks full at this point.  I'm willing to buy a third book if you're still planning to mail your Hope note.  I would love to receive them, as they really encourage us on those rough days and remind us that we're not alone in this.  They are such a testimony to the power of prayer.   Feel free to take a look if you're ever at our house.

Wednesday, 30 May 2012

These are the days of my life...

I woke up this morning and decided it was going to be a good day.  I even pulled some frozen bananas out of the freezer to make muffins. I know, I wasn't being very realistic but I wanted to make them for Shawn.

I started my normal routine, prepped Hope's meds and got ready to give them to her.  When I checked her tube placement, I couldn't get any stomach contents to come out.  I kept trying but couldn't get anything to come back and wasn't sure that it was still in her stomach.  I called the hospital to have them trouble shoot with me.  They told me I'd have to pull the tube and insert another one.  I can't do this on my own, so I called the neighbour to come over and help me.  Thank the Lord he was working from home this week, also that his daughters had feeding tubes as preemies and he was pretty comfortable with it all.  Not sure how comfortable he was with my pj's, greasy hair and morning breath though, he was a good sport!

We inserted a new tube, it came out her mouth.  We tried again and it went in and all seemed to be okay.  When I checked placement...I still couldn't get any stomach contents.  So, the hospital wanted Hope to come in and have an X-ray.  Hope was screaming, she'd been tortured all morning and was also starving. Sadie had woken up in the process and wasn't happy about Hope crying.  She looked worried and could sense my stress, she also kept asking me for breakfast.

I had to call Shawn, he came home from work and took Hope to the hospital.  I would have left Sadie with the neighbour and taken her myself, but I needed to pump in the worst way.  The X-ray showed that her tube had gone down, kinked and was turned back up at the bottom.  They pulled the tube again and inserted a new one, poor Hope.  After that, they gave her the food I'd sent along and the rest of her meds.  Unfortunately by this point they were 2 hours late.  We've had to adjust our entire feeding and med schedule now, it's not the end of the world but it's an adjustment to our routine again.

Clearly the Lord knew that my dream of baking muffins was not a reality.  Someone dropped off some delicious blueberry muffins at the house in the morning, and the mailman brought a package full of muffins from Saskatchewan!  It always makes me smile when God brings things at the perfect time to remind you that He's in control, not you.  My morning didn't turn out as I'd planned, but I still had a good supply of muffins for Shawn!

A friend picked up Sadie in the afternoon and took her out for an adventure.  It allowed me to have a shower, get dressed finally and pick up a few things around the house.  It was a great break and after a quick nap, I felt like a new woman and ready for another day of adventures with Hope.

Addendum:  This is Amy's mom, hour after Amy wrote this blog, they had more problems with Hope's feeding tube.  They had to pull her tube and re-insert another tube because they couldn't get any stomach contents to come out again.  That tube placement failed and another had to be put in.  Before their third try, the cardiologist was called and he said that, if they were unsuccessful with their third attempt, Hope would have to be re-admitted into hospital.  Well, the third try seems to have worked but it's not totally successful. She was able to get a minuscule amount of stomach fluids to make sure it was in her stomach and able to proceed with her feed, but something's just not right. The tube may be hitting the stomach wall which is causing these kinks for some reason. The cardiologist has said you can't have too many of these failed attempts because hitting the wall of the stomach causes bleeds and this can be dangerous because of the blood thinners Hope is on. If there is any problem, whatsoever, with the next feed then they have to take Hope into the hospital and they will be re-admitting her to figure out why they are having these problems.

Please pray that this tube will stay in and, if it's not in a good position, that it will miraculously move into the correct position so that the feeds through the night go smoothly and without any problems. Pray that this will not be an ongoing issue and that Hope will not have to be re-admitted. Another hospital admission exposes her to more risks and germs and would be so hard on Amy and Shawn. Pray that Hope can stay home with her family : ).  Thank you for walking this road with us.....

Tuesday, 29 May 2012

House Arrest

Today was a bit tough on me emotionally.   The reality of being a recluse has settled in once again.  The home care nurse was here today and was sternly reminding me how dangerous it is to expose Hope to people.  She strongly suggested that we never take Hope to highly populated areas; malls, grocery stores, churches, etc. , during this period before the Glenn.  She told us to never let anyone come into the house that was sick, recently sick or around sick people (thank goodness summer is here).  She told us to keep Hope away from children as much as possible and to never let someone touch her that has not washed their hands.  She recommended having a hand sanitizer on every table in the house and using it as often as possible.

As I'm sure you can imagine after reading this, I feel overwhelmed by all of this.  Are we expected to not go to church?  Do I have to get someone to pick up my groceries for me for the next 3-4 months?  I spend almost every day out running errands and meeting with people.  I feel sort of like I have been put on house arrest.  Although I believe Hope is well worth it, I still struggle with this reality.  I'm thankful that it's summer and I can take the girls for walks and get outside to break up my days.  Please pray for me as I adjust to this new lifestyle.  To my friends in Calgary, don't give up on me...I'll be social again by Christmas!

Some positive highlights for the day...we found out that Shawn's coverage at work will help us hire a night nurse to come in and give us a break.  We are working at setting it up and having at least one night a week with a solid night of sleep.  I also had a nurse friend offer to come over for the next two Monday nights and allow us to get a full night of sleep.  This is incredible news and will make a huge difference in our life.  I look forward to waking up one morning and not feeling like I might throw up from being overtired.

I've apparently developed a reputation at the hospital.  It sounds like all the departments have been told about the error made with Hope's feeds.  One of the 'big guys' from the hospital called to apologize today and make sure we were doing okay now.  Dehydration can easily cause the death of an HLHS baby and improper feeds that result in vomiting could easily do this.  They have looked into how it happened and how to stop it from ever happening again.  I'm glad they are working to spare a future mother from such a horrible first night at home.

My calendar is now full of appointments for Hope and is void of social appointments for me.  I realized that becoming a mother would be a sacrifice.  I've watched my parents, as well as Shawn's parents, sacrifice for their children all the time.  I never imagined the sacrifice would be so intense, as we wait for Hope's second surgery and her health to be more stable.  I celebrate her life, and mourn the temporary loss of my own, all at the same time!

I'm hoping for a beautiful summer that will help keep people from getting sick, and make it easy to plan to meet up with friends at the park next to my house.  I can put Hope in the stroller and keep her safe out in the fresh air and away from strangers that like to touch babies faces and hands.  If you're the kind of person that likes to touch random babies in public, you should wash your hands first...just in case.

Monday, 28 May 2012

Schedule Changes

I have Hope at home and there is hope in sight!  Today the dietician that will be following Hope called.  I talked with her about the fact that Hope is gaining weight daily and is no longer throwing up, on the proper milk mixture.  I asked if we could up her volume at each feed and cut out one of the night time feeds, allowing her to go for a 6 hour stretch.  She has agreed to let us try this until Monday, I have an appointment at the cardiology clinic, and they will assess if it's working or not.  Please pray that Hope continues to gain at least 20g a day and we can stick with the new schedule.  It will make a huge difference in Shawn's and my sleep schedule and sanity.

Some days I feel like I joined the army.  My life is very structured now and revolves around schedules all day.  There are a few times a day that I have a 2 hour window without meds or feeds.  I'm not sure how I'll ever manage to go grocery shopping during the day or meet a friend for lunch.  I'm dreading my first doctors appointment and working around feeds and meds to get there.  I'm hoping this new life will eventually become so normal, and that I'll be able to do anything on the go!

I know I've said this before, but truly...Thank You to everyone that has been helping us through this journey.  We would not be eating dinner, having naps or getting Sadie's energy out without the help of the people around us.  We are overwhelmed by the kindness of others and feel completely humbled by it.  We know at times we are busy and may fail to show our level of appreciation, please know that we are so appreciative.

Airport Icky...

You know that feeling you get when you have an early flight and get up at 3am?  I have that feeling most of the time now, I believe it's called lack of sleep.  I'm just finishing up Hope's 5am feed and will be able to head back to bed until Hope or Sadie wake up or the 8am feed arrives.

Yesterday was much better than Saturday, no throwing up at all!  It appears the problem was 100% the incorrect mixture of formula and breast milk.  She was receiving almost 8x as much formula as she was supposed to!  We still find that Hope can be quite gassy and unable to burp.  We can use a syringe to pull air out of her feeding tube, but can't seem to stop the gas from returning.

I've also realized that I'm not very good at administering Hope's injections.  It seems that every time Shawn or I give them, she's bruising.  As a result, we're running out of space on her tiny legs.  The injection can not be given where there is a bruise.  Any tips from the nurses out there??

Just a short update, I need to get to bed!

Sunday, 27 May 2012

Vomit, Poo and Drinkable Yogurt

Our first 24 hours at home have been terrible, to put it nicely.  Hope vomited after 90% of her feeds yesterday and would cry as they were going in.  I had a feeling the level of formula I was adding was too high, but had checked the sheet from the hospital many times and verified it was correct.  Eventually, I couldn't handle seeing Hope vomit any longer and decided to call the hospital.  As I suspected, she was having too much formula mixed into her breast milk.  The nutritionist at the hospital had given me the wrong paperwork.   She had given me the mixture for mixing it with water and not milk.

Our first night, we decided that I would do the first and last feed and Shawn would do the middle feed at 4am.  I slept for just over an hour and then got up for my first feed.  As soon as the feed was finished, Hope began vomiting.  She started by covering the blanket and sleeper she had on, and finished on my shorts.  I had to walk to the change table to get her cleaned up while the vomit on my shorts dripped down my legs.  After I cleaned her up, I decided to change her diaper.  As I was doing so, she pooped all over the clean sleeper and new blanket.  When I changed her into the third sleeper of the night, the vomit returned.  To make this all worse, Hope sleeps on a sensor that alarms if she stops breathing.  Shawn had read all the manuals and set everything up, and I hadn't even looked at how it worked.  When I picked Hope up after she started vomiting, the sensor thought the baby had stopped breathing and began alarming.  Shawn had to get up and come shut it off.

I got to bed 1 hour before Hope's middle feed that Shawn was supposed to do.  I was so nervous that she would throw up again, so I never fell asleep and just listened to the monitor.  I got another 1 or 2 hours of sleep before I got up for Hope's final night feed.  It was again full of vomit and a diaper that had exploded out the side.  All due to the incorrect mixture of her feeds, I have some choice words for the nutritionist if I ever see her again.  As I was finishing up her final morning feed, Sadie woke up and it was time to start giving Hope her meds.  I woke Shawn up at 8:30 and went back to bed for another hour an a half, before it was time for another feed.

When I got up, I gave Sadie a drinkable yogurt.  She managed to spill it all over a blanket in the family room.  I was too tired to care and just gave her a hug and told her it was an accident and mommy would get her another one.  I'm no longer sure if it was an accident,  as she poured that yogurt all over the baby swing and then painted the back of the couch with it.  I wasn't very kind and forgiving after that "accident".

A friend picked up Sadie at 1pm, as Shawn and I were about to fall over and would not make it until evening.  We both had a nap in the afternoon and felt a little better later in the day.  It is now 5:30am and we have almost completed our second night at home.  We gave her pure breast milk through the night to give her stomach a bit of a rest.  There hasn't been any vomiting or explosive poo.  I feel completely exhausted, likely a build up of the last two nights.  It's overwhelming to think about doing this for months, I'm trying to focus on today and not let myself have a complete melt down.  I know that it could be so much worse and I should be thankful.  When we're not doing something for Sadie or Hope, we seem to only be capable of watching tv.  I find it difficult to even find time to eat, and yesterday we only had dinner because someone graciously brought it over.  I didn't get a chance to eat anything until 11am and felt ill through the morning.  I'm trying to work at not allowing that to happen, but eating tends to be a hassle now.   Pumping has also been difficult to find time for, so please pray that I won't end up with mastitis a second time.  That would truly push us over the edge and make this all more difficult.

Pray, we simply ask that people would pray for us as we go through this adjustment.  I wish I was 16 again and could function on such little sleep!

Friday, 25 May 2012

Home Sweet Home!

It's true, we're home with Hope after 7 weeks and 2 days of her being in the hospital.  It felt surreal to leave the hospital, not have monitors on her and no nurses!  I stopped at the hospital pharmacy to pick up all of Hope's drugs, she has a lot of them.  It was a bit frustrating as they kept telling me that they needed 24 hours, but her first dose was due in only 3 hours.  I knew they were just being lazy and felt annoyed that they wouldn't just get them for me, I really wanted to go home.  I was already very bold before this experience with Hope, but now I'm a lot worse.  There was no way I was leaving that hospital without all the meds I needed.  They got them all together for me in 45 minutes, I wonder what they do for the other 23 hours they needed?

At 1:05pm I pulled out of the hospital parking lot with Hope in the backseat and headed for home.  Shawn surprised me at the house, it was incredible to have him home for this exciting moment.  We started out with a bang, I arrived home at 1:25 and Hope was due to eat at 1:00.  We had to rush around and set everything up for her first feed at the house.  We spent the first while making schedules, taping instructions around the house and trying to get ahead of all the work.

Tonight will be our first night taking care of the night feeds, we're going to miss those nurses!  I'm sure this will be the hardest part of each day, please pray for us.  Hope is also quite grumpy after each feed, not sure if it's a result of gas or the way we're giving her the food.  Please pray that we have wisdom as we decide how to feed her and make her the most comfortable.

We'll keep you posted as we find time through the weekend.  Thank you for walking with us to this point, this is a major step in our journey.  Now we just need to pray her through until her second surgery, even the common cold could be deadly to her right now.  Shawn has already started referring to me as a helicopter mom, it's true too.

Thursday, 24 May 2012

Bye Bye Hospital!!

I'm trying not to get too excited, as we've been let down before.  We are told our discharge is scheduled for tomorrow, hopefully early in the day!  We still need to meet with the Pharmacy team to receive our medication instructions, get our prescriptions and we should be out the door!  Please pray that everything works out for our departure.  Pray for Shawn and I as we prepare to lose massive amounts of sleep.  It takes at least an hour to give Hope a feed through her NG tube, and she'll need to be fed every three hours, even in the night.  I will also need to pump each of those times I am up as well.  It will be a tough adjustment when we first get home, but we are thrilled to be out of the hospital.

I have tons of equipment already at the house to prepare for Hope's arrival.  We'll be weighing her and monitoring her SATS daily, feeding her through her NG tube, working at breast feeding, giving her injections of blood thinners twice a day and administering all of her meds.  To say we'll be busy with Hope (and Sadie) would be an understatement.  We will definitely need some help and we so appreciate all the help we've received thus far.

We know there are a lot of people waiting to meet Hope, but we are kindly asking people not to come over unannounced.  Hope's schedule is going to be very intense and there are certain times in the day that would be difficult to have visitors.  We'd love to see you, but we need to schedule visits around Hope and make sure we're not adding stress to our lives.  We hope you understand and aren't offended.  We are also asking people to stay away from Hope if you've been sick or in contact with someone that has been sick.  The doctor was reminding me today about how dangerous it will be for Hope to get sick.  We need to try hard to keep her healthy until her second surgery.

I'm headed home for dinner tonight.  I plan to finish prepping the nursery for Hope's arrival and bring her carseat back to the hospital.  It feels truly surreal to think about bringing our baby home 7 weeks and 2 days after she was born.  Please pray for Shawn and I as we work to have a healthy marriage with all the added stress of Hope's care and the lack of sleep.  We need each other and we all tend to take out our frustrations out on those we love the most!

Hopefully my next update is written from home!

Tuesday, 22 May 2012

Hoping it's nothing...

Last night was not the most pleasant for me.  Hope had her first 24 hours of Q3 feeds.  Although she only threw up once, she was uncomfortable and awake a lot in the night.  I started my day on less than 4 hours of sleep and felt cranky and annoyed before I had even eaten breakfast.  For the first time, I wished my child would stop crying, just weeks ago I longed to hear it and believed I would never get tired of it.

Hope is still on Q3 feeds and is doing so well.  Her stomach seems to be tolerating the full feeds and she's gaining weight.  This morning she weighed in at 7.2 pounds and the doctors were thrilled with her progress.  I got my final feeding tube training and was signed off to go home and be the new feeding tube expert in our home.  I inserted a new tube, learned how to gravity feed Hope at home and was given the ok to begin pushing her meds through her NG myself.  Tomorrow afternoon I'll have my training to give Hope her blood thinner injections.  It was supposed to happen today, but was postponed.  

In the afternoon, I tried breast feeding Hope again, now that her stomach seems to have settled and we're not as worried about her vomiting.  She was amazing!  Hope latched right away and took a fair amount from the breast.  The OT was pretty shocked and thought she would have a lot more trouble.  We're praying that she'll continue to excel at breast feeding and work her way up to taking her feeds that way and losing the tube.  We still have a long way to go, but every step counts!

This evening, Hope had a few episodes of her heart rate going over 200.  They aren't sure what this is about and have her on an ECG monitor again.  If it happens again, they'll know more with the monitor being on her.  They think that it could be nothing, just a reaction to some reflux or something simple like that.  If it is an irregular heart rhythm, they'll have to medicate her to correct it.  We shall wait and see and will keep you updated as we find out anything.  Please pray that it was an isolated incident and never happens again!

In other Hope news, her I.V. failed today.  They tried to insert another one but weren't successful.  They didn't believe me at first, when I told them the IV had failed, but a mother always knows her child!  The doctor decided that it wasn't worth poking her continually to get one in when she had already been on the antibiotic for over 5 weeks. more antibiotics for Hope and no more I.V.  She had some cultures taken to make sure that the infection is 100% gone and we'll get those results in 48 hours.

If everything with the heart rate clears up and nothing new surprises us, we're still on track to go home this weekend.  Please continue to pray, as we know that things with heart babies change quickly and we would really like to go home.  Tomorrow marks two months for us.  We moved to Edmonton on March 23rd and haven't lived in our home as a family of four since.  We know many families that have lived that way for much longer and we feel for them as we know how difficult each day/week/month truly is. Thanks for continuing on this journey with us.

Monday, 21 May 2012

Q3 success!!

That's right, Q3 was started again today and we've had 3 full feeds now and no barfing!  It seems Hope is tolerating the feeds and is doing so well.  She's been sleeping more, this is a sign that she's not too uncomfortable from the feeds.   I'm hoping I can get some sleep tonight, I worry so much about her barfing that I jump up at every sound she makes.  I'll have to get a nap tomorrow at some point to make up for it.

The IV is still holding strong and we have only 5 days left of the antibiotic.  I'm praying the IV line will hold out until the end and she won't have to get another one put in.  She doesn't get poked as often now and I would prefer that it stays that way.  She receives her blood thinner in her thigh twice a day, and her blood is drawn twice a week.  It's much better than the days they took her blood sugars every hour!

We spent a lot of time at the hospital this weekend.  Sadie does pretty well, but seems to hit a wall around the 6th hour of hospital visiting.  I'm surprised she makes it that long, I think watching Curious George helps!  It was incredible to sleep in my bed for the last two nights.  I will sure miss it as I climb onto the plastic mattress here tonight.  The doctor is still planning to send Hope home on the weekend, not sure if it would be Saturday or Sunday.  The antibiotics end on the 26th, but I'm not sure if she has to receive all 3 doses that day or not.  If I tell myself we're leaving on Monday morning, it will make anything earlier seem like a dream.

Thank you for praying for Hope and her feeds, it's clearly making an impact and we're thrilled to see her receiving full feeds!

Sunday, 20 May 2012

Daddy's Sleepover

Shawn here...
Over the past 24 hours I have gained a much more accurate understanding of what Amy has been going through by living at the hospital over this past week.

At around midnight last night the nurse came in to do one of her many assessments and discovered that Hope's PICC line had grown longer.  Over the course of the day her PICC line was slowly getting pulled out of her body.  By the time midnight came around, it was basically only in her arm by a couple of centimetres.  Instead of leaving the line in, the nurse decided to pull it out since it would likely become useless by the time Hope's 6 am antibiotics dose was due.

What that meant for me is that I was woken up at 5 am while the nurses attempted to put in a new peripheral IV.  Luckily the nurses were able to get a good IV in relatively quickly, but Hope pretty much screamed the entire time.  Once the nurses were done I got up and held her until she settled down and started to fall asleep.

Needless to say I didn't feel very rested by the time morning came around.  I don't know how Amy does it because I wouldn't be able to give up on my sleep night after night.

After yesterday's Q3 feeding failure Hope was placed back on Q2 late last night.  Throughout the remainder of the evening and the rest of the day she did well and didn't have any problems.

Amy and Sadie came over to do lunch and in the afternoon my parents came by to babysit Hope while Amy and I took a walk to Market Mall allowing Sadie the opportunity to take a nap in her stroller.

Tonight we left Hope alone and came home as a family for the first time in a week.  We are both looking forward to a good sleep to catch up on what we've both been missing.

Tomorrow you will get your regular blogger back but for now I hope my writing skills were able to keep your attention.

Saturday, 19 May 2012

On the Move

I had a really neat opportunity today.  My nurse attached Hope to a portable monitor, and allowed me to carry her around.  I was no longer limited to the two feet of wire that attached her to the monitor at the bed.  I went for a walk through the halls, laid down on my bed with her and felt completely free.  It sounds so simple and yet, it felt like a huge step for Hope.

We had a setback today with establishing Hope's feeds.  She started on Q3 and did not tolerate it at all.  She threw up the first feed before it was finished and had the same reaction to our second attempt.  Her tummy is not ready for that kind of volume just yet.  They've taken her back to Q2 for the night and will reassess in the morning to decide our next plan of action.  Please continue to pray that we'll be able to reach Q3 soon, Hope has to reach it in order to go home.

I was really blessed today to have two friends come to the hospital.  One of them snuggled with Hope, while the other one took me outside for a much needed work out.  It felt nice to be in the fresh air and to get moving again after my pregnancy.  I tend to push myself more with others and truly appreciated the encouragement to be healthy and take time for myself.

Tonight I am writing from my own house, Shawn is at the hospital with Hope for the night.  He offered to spend the night with Hope so I could be at home with Sadie for a night.  It feels so great to be outside of the hospital and to do normal things.  I've been doing laundry, cleaning, organizing and catching up on the PVR too!

I put Sadie to bed in her big girl room for the first time.  She was completely fine with sleeping in her big bed and I haven't heard a peep since.  I guess the transition is going to be easier than we thought.  If we can continue this for the next week, we may be able to get the crib ready for Hope.  It seems surreal to think that Hope will live here with us before too long.  We are praising God for the progress she has made and the thought of bringing her home!

Friday, 18 May 2012

Turtle Speed

Some days in the hospital go very quickly, today was not one of them.  I'm a bit afraid of the long weekend, a lot of the specialists we see won't be working.  It could be a long 3 days for Hope and me.  I spent lunch and dinner with Sadie today, that helped break up some of the time.  Our room starts to feel really small after a few days of being in here.  It's a good thing the nurses come in and out, it gives you a little bit of social interaction.

Hope was started on Q2 feeds this morning, after I told the cardiologist I thought she could handle it.  He was willing to try it, if I was up for sticking close to be sure she didn't start barfing when no one was watching.  She has been on Q2 for 7 hours now and hasn't thrown up at all!!  I'm very proud of her and hoping she will continue to tolerate these feeds and be able to move up to Q3.  

I still want to establish breastfeeding with Hope, but am being cautious today.  I don't want to make her throw up and have to go back to Q1.  I feel like it's more important to work out her tummy issues and then focus on breastfeeding.  Everyone is still aiming to have us out of here when her antibiotics are done and I am more than happy to go!  8 more days until her last dose of antibiotics.  We can only pray she doesn't get sick in the meantime. 

Tonight, as I reheated our dinners in the microwave, the mom from the room next door started chatting with me.  As she shared her story and cried while she hugged me, I was reminded again just how fortunate we are.  Her daughter is in palliative care and is not doing well, she almost died herself in delivery and lost her uterus as a result.  This was their first child and will now be their last.  She was having a rough day and needed a friend.  I need to remember that even when I feel consumed with my own situation, I'm still able to love others.  There are still people hurting all around me and I believe that God can give me the strength to be an encouragement here.  It's so easy to forget to look up and notice those around you.

Shawn and I feel like we are both single parents right now, each raising one of our girls.  It's not the most ideal situation and we sure miss being together.  I have a new respect for single parents, it's not easy to feel like you never get a break.  We've already started dreaming about a vacation away from it all, just the two of us!  

As boring as living in the hospital can be at times, we are so encouraged by the progress Hope is making and look forward to bringing her home.  We have to remind ourselves that we have walked through days where we didn't think Hope would make it until evening.  She is so strong, and even though she still has to fight until her second surgery, we believe she can do it.  

Thursday, 17 May 2012

The Day of Barf

Today was a set back in establishing Hope's feeds.  They put her on Q2 this morning and began feeding her for one hour, every two hours.  She was fine until the second feed, she then began to heave and barf profusely.  It was pretty sad to watch, it was followed by an outfit and blanket change.  An hour later I tried to introduce the bottle again with the OT, she took 12ml from the bottle!  After this, she barfed and received her third outfit of the day.

They then took her back to Q1 to give her stomach a break and will try Q2 in the morning again.  I talked with the cardiologist about bottle feeding today.  It seems like a waste of time to me when I want to nurse her eventually.  He agreed to let me try as long as I use the breast that had mastitis and has very poor flow.  That will make it easier for Hope and may help me out as well.

Tonight while Hope was fussy and screaming, I decided to give nursing a try and she latched!  I had to take her off as I needed her to be weighed first, they have to track how much she's taking.  After the nurse weighed her, we tried again and she eventually latched for a minute.  She's just as successful at nursing as she is at bottle feeding.  I think we're going to drop the bottle feeding and focus on nursing.  She's not allowed to try for more than 10 minutes at a time as it tires her out and she burns too many calories.  It sounds funny, but it's true!  Please pray that she catches on to nursing and we won't have to give her full feeds through the feeding tube.

I also inserted my second feeding tube today.  On my first attempt, it came out Hope's mouth and scared me a little.  The second attempt was successful though, I'll try again when we change this tube in one week.  They still hope to send us home next Saturday if we meet some criteria.  Hope needs to reach Q3 feeding (feeding for one hour every three hours), gain some weight, and not barf too often.  Please join us in praying for these things.

I'm ready for tomorrow, I brought a new batch of clean clothes for Hope.  I thought I had too many clothes before she started barfing.  Now that we go through 3 outfits in one day, I think I have just enough!

Back to School...

I have often felt like a student through this process with Hope.  Today my teaching was on NG tubes.  I was given a book to study yesterday, which I carefully read through and tried to absorb.  Today was the practical lesson, I was shown all the materials and given some instructions.  Then, I was told to give it a try and remove Hope's NG tube and insert a new one.  I was very nervous, but I know I have to learn these things in order to take her home.  So, I stepped up to the plate and did it!  Surprisingly, it was not as bad as I'd thought and I realized that I am capable of learning whatever it takes to bring my baby girl home.  The doctor said that Hope could have the tube for months, so caring for it will be my job for quite some time.

Today we started Q1, that is the term for feeds that take place every hour.  The continuous feeds were stopped and every hour, Hope received a larger amount of food for 30 minutes.  She was then given 30 minutes to digest before the next feed began.  Everything was fine until 11am, then we had a large barfing session.  It's been 12 hours since the barfing and everything is going very well.  She's managed to keep it all down and seems very settled with the new feeding routine.  Tomorrow morning at 6am we are going to start Q2, she'll be fed every two hours for one hour.  These are steps that lead us closer to home and we celebrate each one.

I haven't been getting a lot of sleep lately, it's after midnight and I've just gotten Hope to sleep.  Please pray for strength and energy as we continue to walk through this.  We have been so encouraged by everyone around us.  Thank you to everyone that sent cards, packages or personal messages.  Sometimes I feel like you all read my thoughts!  This morning I went downstairs at the hospital to buy a drink at the coffee shop.  I was feeling exhausted and needed a little pick me up.  The prices were pretty high and I decided I wouldn't treat myself very often.  A few hours later, a card arrived with a gift card for that very coffee shop!  Looks like I'll be treating myself again tomorrow after all.  We are truly humbled by the kindness that has been shown to us, I have learned so much from this experience and believe that I will now support those around me in a different way.

It's a long road to the second surgery.  We are not forgetting that we will still be vulnerable after Hope is released from the hospital.  Living in fear is draining, we are choosing to walk in faith with her each step of the way and to trust in God's perfect plan for her life.  We pray that she will have a long and healthy life, but we celebrate each day with her and take it one day at a time.  Today with her was wonderful, when I sit and look into her eyes, I can't help but believe that God never makes mistakes.

Tuesday, 15 May 2012

Hospital Hiccups

I have learned that there are often things missed in such a large medical community.  I meet with doctors that inform me of our next steps, but fail to take the next step themselves in order to make it happen.  I completely understand that they are VERY busy and we are one of their many patients.  As a parent, you don't care about any of that, and only feel the frustration of your own situation.

Today they had planned to stop feeding Hope continuously and to start giving her regular feeds through her tube during the day.  Unfortunately, the doctor failed to write these orders and the nurses are not allowed to do anything without an order from the doctor.  The cardiologist didn't come by until 6 pm, so the order has now been written and will be started tomorrow morning.  That sets us back a day and I can only pray it doesn't delay our departure.  Thankfully, our nurses have been fantastic and informative in so much of Hope's care.  They've begun teaching me things that I'll need to know before we can head home.

Hope slept for most of the day and was very tired.  I'm hoping that doesn't mean she'll be ready to party all night.  When the OT came to try bottle feeding with Hope again, we weren't able to get her to wake up enough to eat.  She's going to come back tomorrow and try again.  I got to have lunch with Sadie at the hospital today.  It's always nice to see her during the day.  She is doing so much better and seems to have adjusted to life back in Calgary.  She's her fun loving self again.   We have a blast with her and cherish the moments.  I went home for dinner tonight, and after dinner we went for a walk with Sadie and marvelled at her sense of adventure and creativity too.

It's great to have our friend from the Ronald McDonald House here.  Her daughter has HLHS as well and we're able to compare our care.  That way we can be sure we're not missing any important tests or medications that are overlooked by accident.  We have different cardiologists, with different action plans for our girls.  If we work together, we'll get the best of both doctors!

Living in a hospital room is not the most ideal situation, but it does have its perks.  It causes Shawn and I to be intentional about finding time to spend with one another.  When we spend time here, our main goal is to snuggle Hope and to be together.  We've gained a lot of incredible time with each other that is free of distractions.  If we were together in our own home, I'd be folding laundry, cleaning the kitchen or checking my email.  I find that I spend more quality time with Sadie too.  She's so curious about the world and is asking a lot of questions.  I look forward to having my family in one place again, but I hope we continue to be intentional about quality time with one another.  I hope that I can hold onto the most important thing I've learned, family is more important than anything else I need to do.  Right now I don't have the option of doing something else, I pray that when I do, I continue to value my family above all else.

Monday, 14 May 2012

A Day of Firsts

Today was full of many firsts for Hope and me.  The occupational therapist came today to see if Hope was able to suck properly and if she could swallow.  She is taking the soother very well and has maintained that reflex thankfully.  They tried giving her a bottle, but she coughed and wouldn't take the milk.  They let me try and she took it!  She ate 5 ml from the bottle and has tasted milk for the first time in her life.  Big steps for a little girl that has been through so much.  We still have a long way to go, but we're moving in the right direction.  Tomorrow they will start giving her larger amounts of food every hour, instead of feeding her continuously.  Please pray that her stomach is able to tolerate it and we can move forward in her eating plan and get her eating every 3 hours like a healthy baby.

The cardiologist told me today that they are working to have me out of here with Hope when the antibiotics finish on the 26th of May.  This was excellent news!   I am praying that Hope does well with feeding and we don't have to be delayed by any problems.  I'll need to learn how to insert Hope's feeding tube, give her injections for her blood thinner and monitor her weight daily.  I'm more than willing to learn, although very nervous.

I went home in the evening tonight to have dinner with my family while Oma cuddled Hope.  After dinner we went out for a drive and found a lost two year old girl standing on the road.  That was a first for me!   It felt good to protect that little girl until we found her frantic father.  You don't often find a small child, wearing only one rubber boot, and standing at the side of the road.  I can only imagine how I would feel looking for Sadie and not knowing if she was safe.  When I left the house to drive back to the hospital, the two cars in front of me got into an accident.  It looked like everyone was safe and the damage was minor, so I continued on my journey back to Hope.  This day had almost too much excitement for me!

Tonight Hope was really upset for about an hour, nothing would calm her down and she was screaming.  The screaming was causing her to de-sat and they were giving her oxygen to get her levels back up.  After a dose of tylenol she seemed to settle.   There was also some pooping done.  We were thinking it must have been a gassy tummy but I worry whenever Hope is really upset.  I fear the worst and have to remind myself that even healthy babies cry sometimes.  I immediately assume that her lungs are failing or her heart isn't working properly.... never considered gas pains!

It feels incredible to be at this point in our journey.  Hope has come so far and amazes me each day.  I've finally had the opportunity to truly bond with her and get to know her more.  I feel completely and totally blessed for what we have.  Being at the Ronald McDonald House and in the hospital has shown me that so many people are suffering.  We have so much to be thankful for with Hope.  I also am remind of the incredible support we have.  I look at others that walk through these challenges without the support of their friends and my heart aches for them.  We are truly blessed and we want to make sure everyone knows how aware we are of the incredible friends and family that we have.

Saturday, 12 May 2012

A Real Mom...

Today, I dropped my mom off at the airport in the morning and then went over to the hospital.  Seeing my mom depart was tough.  I wouldn't have been able to make it to this point and still be standing without her.  I've always been a pretty clingy child and want my "mommy" in life, but especially when life is tough.  I was excited for my parents to be together again though.  I know that this has been a huge sacrifice for both of them.  Now I just have to keep myself from calling and begging them to come back too soon!

Today was the first day that I truly felt like Hope's mom.  I can finally pick up my baby without asking for a nurse's help.  I changed Hope's diaper for the very first time today, and I think I changed 5 or 6 by the end of the day!  I was able to sit and rock her while I read out loud to her, sang to her or just watched tv.  I was finally able to show Hope to a friend too.  Shawn came with Sadie and we were able to visit as a family and, as I watched Shawn sit with both girls in his arms, I felt truly blessed.

I also experienced again, the pain of being a mom with two kids and only having one of me.  Sadie had an accident at the house and burnt her hand.  Shawn called me at the hospital and Sadie was screaming in the background in pain.  My heart was ripped out of my chest as I wanted to run to her and be able to comfort her in that moment.  There are many times that I long to be in two places at once, I want to be 100% there for both of my girls.  I can only pray that we get home soon and I can have my girls in the same place all the time.

The cardiologist came to talk with me today and was very encouraging about Hope's current condition.  She's doing very well and they plan to pull her NJ tube up to an NG tube tomorrow and start feeding her to her stomach for the first time.  She was retching a lot less today - I think it only happened 2-3 times all day.  If she feeds well and we conquer that battle...we could be home in 2 weeks.  I'm trying not to get my hopes up...but they're up anyway!

Tonight Shawn and I sat down and worked out a schedule.  I move into the hospital tomorrow to live in Hope's room.  We worked out a schedule so that I can have dinner with my family a few nights a week, Shawn and I will have a date night and Sadie will be taken care of at home as much as possible.  This would not be possible without Shawn's parents and our friends.  We are truly blessed to have the support that we do and we want to sincerely thank everyone for standing with us.

Time for me to go and pack up my stuff.  Your next update will come from Hope's room!

Friday, 11 May 2012

Good News All Around!!

Today was an awesome day.  I don't think I have any bad news to report...that's a first!!  Praise the Lord for a day full of good things.  Today, I decided to keep Sadie with me.   This was a huge blessing and was great for my little girl.  It was my mom's last day in Calgary - this isn't very exciting and could be considered bad news I guess.  We left for the hospital in the morning with Sadie and brought her to a program there called 'Emily's Backyard'.  They will allow you to drop off your child to play if you have another child in the hospital and will keep them for 1.5 hours.  Sadie loved it and walked in without a thought and didn't look back.

During morning rounds we found out that Hope was moving to the ward!  At 3 pm, they moved her up to the second floor to start the next step in getting her ready to come home.  At 7 pm, they took her off high flow oxygen and she did so well that she's no longer on any breathing aids.  They also removed her NG tube that was suctioning from her stomach.  Now the only tube on Hope's face is her NJ tube.  Tomorrow they hope to pull it up and make it an NG tube.  This means that Hope will receive food to her stomach for the first time in her life!  Today is also the first time in her life that she hasn't been in the Intensive Care...we are so thankful!

Our new challenge will be living on the ward.  Now that Hope has been moved upstairs they encourage parents to room-in with their child.  They have proven that children recover 33% faster if their parents live with them at the hospital.  As a result, on Sunday night I will be moving into the ward with Hope and learning how to care for her.  Shawn's parents are going to move into our house to help him with Sadie as he'll be going to work each day.  As you can imagine, life is still not going to be 'normal' for us for quite some time.  Please continue to pray for us as we wait to come home with our little girl.  The earliest we can leave the hospital is May 26th, as that is the day she'll finish her IV antibiotics.  If we have feeding issues, we could be there a lot longer.  Please pray that Hope is a star when it comes to eating.

Thank you to everyone that has been helping us out, life has been full of change and we wouldn't still be standing without the support we have around us.

Thursday, 10 May 2012

A Short One...

I was planning on skipping today and heading to bed, but I know how boring the internet feels at times and thought I could post a quick update to give you something to do when you have important things you should be doing!  

Hope is pretty stable right now, however, they are concerned about her colour as she's pretty dusky and pale.  It's hard for us to tell if it has changed a great deal, as the lighting is very different with the window in her room now.  She is pretty grumpy when she's not being held, finally acting like most babies that aren't high on narcotics all the time!  It's amazing to have her awake so much more and alert too.  I spent today just holding her and loving every minute.  They're talking about the potential of sending her to the ward tomorrow.  This is a huge step and very exciting!  It looks like our best case scenario would be at least another 3 weeks in the hospital.  It's tough to guess though - they tend to like surprising you!


Wednesday, 9 May 2012

We're back, again!

This morning my mom went over to the hospital and I had breakfast with Sadie while we waited for her great aunt to pick her up.  At 9:45, my mom called to let me know that Hope was scheduled to go back to Calgary.  This was VERY exciting for us all.  We were pretty guarded in our excitement, but excited nonetheless.

Shawn left work and came over to meet us at the hospital.   We spent the rest of the day cuddling with Hope until the team arrived to take her back to Calgary.  She departed at 3 pm and beat us to Calgary (the plane was much faster than our car!)  We also had to pack up all of our things and load them into the car with Sadie.  Sadie was pretty scared as soon as she saw the suitcases.  I think it will be really good for her to start sleeping in her own bed each night.

After we arrived in Calgary and dropped Sadie and my mom off at the house with our things, Shawn and I went over to the hospital to see Hope.  Hope is in the same room as she was last time we were transferred to Calgary.  It's a bit of a frustrating experience when you get transferred.  Everyone has a different opinion and all the information we receive is different.

Here in Calgary they are debating whether to take Hope off breast milk and put her on special formula to treat the chylothorax that the Edmonton doctors said had resolved.  They are concerned about some fluid on the right side of the lung, something they didn't seem too concerned about in Edmonton.  They are also very concerned about the temperature of Hope's feet - they're very cold and that could mean problems with her heart function.  Tomorrow, Hope will be having an ultrasound and echo to decide what the next steps will be in her treatment.  Please join us in praying that if anything is found, it won't be something that requires us to return to Edmonton!

I have a lot of things to do now that we're home and need to get off the internet!!  I'll update more tomorrow after we get a better idea of what's going on here.  Thank you for continuing to pray for Hope and our family.

Tuesday, 8 May 2012

Afraid of Optimisim

Last night we were told at 11pm that Hope wasn't tolerating the cpap as well as expected and they feared they'd need to re-intubate her.  Thankfully, that was not the case, and she got through the night on the cpap with some trouble-shooting by the nurse.  At 3 pm today, the doctor ordered the cpap machine to be taken off and a high volume oxygen line to be started.  The cpap machine was kept in the room as a precaution, as they weren't sure how she'd do.  She tolerated the change well and was free of her not-so-cool mask.

These are wonderful steps in the right direction and are getting us closer to Calgary.  Having been burned in the past, when we thought we were doing well and almost lost her, optimism is a somewhat scary thing.  We truly fear it in some ways because the disappointment is so painful.  Instead, I'm thankful for every small victory, but being cautious of getting carried away with how well she's doing.  She still has sickness in her lungs and isn't breathing as well as she should be.  We can only pray that this improves each day and we don't take any steps backwards.

The best part of today was cuddling with my little girls.  I spent some one-on-one time with Sadie in the morning and Hope in the afternoon!  You know it's time for a cuddle when you sit beside Hope and wonder if you could pick her up when the nurse isn't looking and manage to avoid any of the alarms going off on the machines.  I did restrain myself, and at 4:45 today, I got to hold Hope for the first time in 10 long days.  It feels so good to have her in my arms and I look forward to being able to care for her at home some day.  

We are hoping that the doctors will give us some idea of when they think we'll be able to head home at rounds tomorrow.  Now that Hope is off the breathing machines, there isn't a lot of reason for us to be here.  It will come down to the surgeon.  He gets to make the final decision and will likely be hesitant because of what happened last time.  We may also run into problems if there are no beds available in Calgary.  We've been told that this could delay us as well.

Hope is now on 16 ml. of breast milk an hour.   This is the most she's ever received!  Her sugars have come up a bit, but not enough to cut back on the glucose supplements they've been giving her.  We need them to come up a bit more and are hopeful that the feeding with help.  It's nice to finally have some use for the mass amounts of milk we've been storing.

Please continue to pray Hope's infection and her healing, our return to Calgary at some point and for Hope's glucose levels.  Please also continue to pray for Sadie.   She does so well when we keep her with us all day and just trade off at the hospital.  It's very difficult for us to do, but works wonders in her feeling of security and behavior.  Tomorrow I hope to spend most of the day with Hope in my arms!!

Monday, 7 May 2012

Trading a tube for a mask

Today went incredibly fast and I feel like I ran a marathon at some point cause I'm exhausted.  We got up and checked out of the hotel and moved into the 'borrowed' condo this morning.  It's an absolute perfect location for us to walk to and from the hospital while Shawn is at work with the car.  We got to the hospital late this morning but managed to be there for rounds anyway!  The doctor was pleased with the progress in Hope's lungs and decided to attempt extubating her, but wanted to put her on a cpap machine just in case.  

In the afternoon they took an X-ray to confirm that her lungs were ready before they moved forward.  The X-ray confirmed that she was looking better and the extubation was a go.  A team was assembled and the extubation began.  Hope's lungs were still not healthy enough, from the infection, to breath on her own and the cpap machine was started after the tube was removed.  She's currently on a low setting with the cpap and seems to be tolerating it well.  They're hoping she'll only need the assistance for 24 hours and will be moved over to a small oxygen tube under the nose by tomorrow night.

They've continued to talk about our return to Calgary, and we think it could definitely be coming soon if Hope continues to make steps in the right direction.  The doctors in the PICU feel that we are safe to return to the Calgary hospital (as there is no need for any additional surgery), to continue Hope's care, but the surgeon didn't want her to go until she was breathing on her own.  If all goes well with the cpap, we hope to be sleeping in our own beds by this weekend.  

Hope's sugar levels are still really off and they can't seem to get them to come back up.  The nutritionist did some calculations this morning and figured out that her protein consumption has been very minimal and she's been fed minimally because of all the procedures she's been having.  They've agreed that once she is receiving proper nutrients, they will likely resolve itself.  They've restarted her feeds and are giving her more than she's ever gotten, but still less than she needs.  It's hard to believe my baby is a month old and still weighs less than 7 pounds!  If we don't have any more bumps in the road to recovery, she should start gaining weight soon enough.  

Please continue to pray for Hope.  As we discovered last week, good days can turn into bad days very quickly.  The more we talk with the doctors, the more we realize that Hope was truly on death's door last week and is here today by the power of prayer and the mighty hand of God.  Tomorrow is a new day, and we pray a day filled with small victories for little Hope.  Her heart friend Holly was flown back to Calgary today and we look forward to joining them there.  We have another Calgary heart friend here that we're believing will be close behind us as well.  

Sunday, 6 May 2012

Moving, just slowly.

Today we made some progress, but weren't able to get as far as we'd hoped.  In the morning a surgeon came and removed Hope's stitches, as well as her chest tube.  After rounds, our nurse removed Hope's Foley catheter as well - she is peeing in a diaper once again!  The next step was supposed to be the breathing tube, unfortunately Hope is still not ready for that to go.  The CT scan showed a lot of mucus build up in the bottom of her left lung.  Today, they put Hope in the "prone" position, chest down and back up, in order to clear some of this.  She had to stay like that for 12 hours, but wasn't a huge fan of the idea.  As a result, they had to sedate her and eventually paralyze her temporarily as she wouldn't stop fighting them.  She has another 4 hours left in that position and, so far, it hasn't appeared to do what they were hoping it would.

They have told us that Hope will not be extubated tonight and they'll assess her again in the morning to see if tomorrow might be possible.  She's still not ready and the junk in her lungs is making it a lot harder for her to breath unassisted.  The topic of Calgary did come up today, and the doctor said he didn't see why we'd need to be in Edmonton too much longer.  He felt that Calgary was more than capable of continuing our care, as we didn't have any surgical needs, thankfully!  He suggested we might get back to Calgary sometime in the next week, but we're trying not to get our hopes up too high.

Visiting with Hope isn't quite as comfortable as it usually is.  Hope had a swab done on May 1st that came back positive for the common cold virus.  As a result, she is now in isolation and everyone that comes into the room has to put on a gown and mask.  We're hoping this won't last too long, but we've been told it could be a few days before the isolation rules are lifted.

Tonight before we left the hospital, Shawn and I were alone with Hope and her nurse.  Our nurse picked up the blanket under Hope and allowed us to slip our arms underneath so that we could give her a makeshift hug.  I haven't been able to hold Hope for over a week now and that half hug felt incredible.  I am dying for her to be extubated so I can snuggle with her again.

The medical staff are having trouble balancing Hope's fluids   She seems to be too wet or too dry all the time.  Please pray that they are able to find the perfect balance as she swells up with too much fluid and her sats plummet and her eyes look sunken when she's too dry.

I've spent my evenings working on my scrapbook of Hope notes and it gives me so much joy to see how many people are praying for our little fighter.  I also dream about showing it to her when she's older and teaching her about the God that loves her so much and has been walking with her through this difficult journey.  Thank you for taking time to send them, it's been very therapeutic for me.

Saturday, 5 May 2012

Not great but still thankful...

One benefit of being in an environment surrounded with suffering is the reminder to be thankful.  There is always a family close by that is suffering in a different way that captures your heart and reminds you to be thankful.  Today, we watched two of our 'heart friends' from the Ronald McDonald House, go through tough decisions and bad days with their warriors.  I was reminded that, although we didn't get the news we wanted, we still have things to be thankful for.

Having Sadie back is wonderful and stressful at the same time.  Moving her around constantly and sending her to a babysitter on a regular basis has brought on some poor behaviour at times.  I find that the stress of our situation with Hope has made me unable to handle the poor behaviour and not be a very patient mom.  Not that I was patient to begin with, but I'm worse now!  Tonight I came back to the hotel alone with Sadie and put her to bed while the others were at the hospital.  It was a time that I cherished as we sat on the bed together to read books, watch some Curious George, sing songs and snuggle.  When she feels secure and loved, Sadie thrives and I want more of that for her.  Please continue to lift her up in prayer as this situation is not what she would have chosen and it's not easy for her at all.

Today we were finally taken for our CT Scan.  Hope was booked to go at 10am this morning after it was cancelled last night.  Apparently, they didn't have a nurse to insert the dye and were unable to do it in the evening.  At 10am there was a patient with a stroke and we were pushed back again, but finally got our appointment and had the test done.  Hope did very well and thankfully did not react to the dye during the test.  We are praying the radiation will not affect her body poorly going forward in life either.

After the test, Shawn and I took Sadie out for lunch to spend some time with just us.  She was really excited to be alone with us and feeling "normal" for a small portion of the day.  The CT results took a few hours to get back to us.  They weren't what we were hoping for, but could be worse.  There is a clot in the SVC, it has obstructed 25% of the flow to the heart.  This does not take away her potential for having the Glenn surgery and for that we are truly thankful.  The plan is to keep her on a high dose of blood thinners and trust that the body will dissolve the clot itself over time because of the high volume of blood that is pumped through the SVC.  The clot in the innominate artery is not expected to ever reopen as it is 100% clotted and does not have any flow going through.  This is less serious, although still not great for our little one.  Please pray that the blood thinners do their job and dissolve that clot in the SVC to give Hope a strong, more stable heart.

Hope is still on the respirator as she wasn't tolerating the weaning very well this afternoon.  They've had to slow down and are hoping to remove it late tonight or early tomorrow.  They also plan to remove her stitches from surgery in her chest within the next 24 hours.  Some of the procedures are only small steps, but we need to celebrate every victory we have and praise the Lord for any progress!  Each step we take in recovery will bring us closer to Calgary and being home again.

The doctors are all agreeing that, in Calgary before we left, the echo results showed that her SVC was completely clotted and had no blood flow at all, but had improved sometime during the flight from Calgary to Edmonton.  I would like to say with certainty that it can only be the power of prayer.  Thank you for bringing that request to the Lord and being a part of an awesome miracle that truly saved our daughter's life.  The chances of us finding a heart transplant for Hope, which would have been our only option, in such a short time, would have been almost zero.

We have been blessed to find a place to stay from Monday to Sunday next week.  A couple that live just a 5 minute walk from the hospital, are going away and have offered their place to us.  This will be so much easier for getting back and forth to the hospital, especially once Shawn returns to work and we don't have the car!  It will also be wonderful for putting Sadie to bed and not having to sit in the dark of the hotel room until she falls asleep!  Another blessing that we are very thankful for.

Friday, 4 May 2012

Hurry up and wait!

It's me again! (Charlotte).  Amy asked me to post an update, as they are going to be getting home too late tonight from the hospital.

Today was another day of waiting..... Hope had an OR time of 11:00 a.m. to have her PICC line put in but it wasn't until about 1:00 p.m. that they were ready for her.  The procedure went well and they were successful!  With the PICC in place, she could now be able to have her CT with contrast in order to see what the condition of her SVC was and what was happening with the blood clot.  Apparently, she is on the list for today, but it is almost 8:00 p.m. so it looks like it might be late tonight before she goes and we hear the results.  There was talk, at one point, of possibly doing a different test to get a better picture of the SVC, without the radiation of the CT, but that was ruled out.  Hope was pretty stable today and, even though it's frustrating to wait and still not know what is going on in that little body, it was great to enjoy very few alarms going off!  She is looking kind of pale but apparently that is because she is pretty "dry" after the Lasix has been helping her shed a lot of fluid.  They are hoping after her CT to extubate her, so long as the CT doesn't indicate a need for any unexpected surgery.

A highlight of the day was the arrival of my husband, Ian, and our son, Ryan - so good to see them!!  They brought along Sadie with them (they landed in Calgary and drove to Edmonton, as we were supposed to be in Calgary!!!).  Sadie was so glad to see her Mommy and Daddy and they were excited too!  After supper we went back to the hotel and Amy and Shawn headed back to the hospital to wait for Hope to have her CT.  As much as we wish they didn't have to do the CT and expose Hope to all that radiation, we are anxious to know the reason for the "turbulent" blood flow in her SVC and the status of the blood clot.

After a few days of feeling like you were just holding your breath, afraid to think of what could be next, it was nice to breathe!!.....even though we don't know what the CT will hold, it was nice to not have the room packed with doctors and nurses looking quite so worried!  It was still tough to watch Hope struggle with her ventilator, at times but, in this roller coaster ride that we're living right now....we were glad to take a breath! least for now!

Just keep praying that the CT will show the SVC clot-free and that there is no abscess or hematoma in her chest.  Pray also that this new PICC line will not clot or get infected.  They are also doing more tests on Hope's original blood cultures to see if there is a better antibiotic that they could be using.  Pray that this recent setback will not be long and that there will be no more complications!!  Yup, we need a miracle!

Address in Calgary for Hope notes:
Hope Koslowski
919 Centre St. NW
Suite 133
Calgary, AB
T2E 2P6
This is a UPS store and will allow things to arrive while Amy and Shawn are away and will be in use for the next 90 days.  We are so excited to show Hope how many people were praying for her while she grew.  If you haven't sent one yet and want to, there is still time.

Thursday, 3 May 2012

Living on the Edge

We are truly living on the edge of a steep cliff and holding our breath most of the day.  It's never great when you ask the doctor what he will we do if our baby's IV fails and he tells you, "panic!"  The doctors have been very honest and genuine with us through this ordeal and we've really appreciated that.  They've let us know that they are being forced to make decisions with Hope that they normally wouldn't choose if they had any better options.  We truly are stuck between a rock and a hard place and we're doing what it takes to make it to the next day.

Hope is very uncomfortable with her breathing tube.  They are hoping to remove it tomorrow if her lungs dry up a bit more.  Please pray that her lungs dry up well through the night and she's able to be extubated tomorrow afternoon.  We've had a terrible time with IV's and lost our final one today.  By a pure miracle, an anesthesiologist was walking past and was able to get a new IV in Hope's foot on the 4th try.

Tomorrow we are booked to have a PICC line put in around 11am.  This is required for Hope to have a CT scan to further investigate her blood clot and to find out why the blood flow isn't normal in her SVC.  If the CT scan shows something that will need to be resolved surgically, we'll be here for quite awhile.  If it shows nothing, or some improvement, there's a better chance that we'd get back to Calgary sooner.  Whether that is one week or 3 weeks...we have no idea and the doctors aren't offering to make any guesses at this point.

My mastitis seems to be resolving, but my milk supply in that breast is not great.  This causes some awkward lopsidedness...I don't think that's in style right now!  I'm hoping it will get better and catch up with it's buddy but I'm not holding my breath. (TMI?)  I am truly thankful to not be in constant pain and free of fever and chills.  Praise the Lord for that being over and the need for IV antibiotics to be over as well!  I do need some prayer to have the strength to continue though.  I find pumping very tedious and have to push myself everyday to continue pumping for a little girl that isn't eating much!

Sadie is coming up from Calgary tomorrow with my dad and my brother.  They booked flights to Calgary to come and visit, but we are sadly not in Calgary.  They'll be road tripping up for a weekend visit with us.  At least they know we're emotionally unstable and will come ready to join the cry fest - you know what "rocks" those Kirk men are!  We're hoping and praying that our little one will get stronger each day and start to look better and make strides towards recovery from the infection.

Our doctors here have been great the last couple of days and have been communicating well with us, and we are thankful for the care Hope is receiving.  Please continue to pray for wisdom for the doctors, nurses and other medical staff that come in contact with Hope.  We really rely on their suggestions and recommendations when it comes to Hope's care and are trusting that God will guide them.

Wednesday, 2 May 2012

Bad days can get worse...

As my mom wrote yesterday, things have been stressful to say the least.  Shawn and I slept at the hospital last night in one of the parent rooms.  They must make these rooms intentionally uncomfortable to keep you from wanting to move in!   Sleep was limited, but were thrilled that Hope stabilized a bit more through the night and we didn't have another close call.

We are blessed that our little one is still with us, but we have a long way to go.  This afternoon, an echo was done that showed that the blood flow in Hope's Superior Vena Cena is not great.  They can't see an actual clot there, at this point, but are sure that something is obstructing the flow.  The obstruction may be outside the vessel, but they aren't sure what it is at this point.  The echo will be done again in the morning. If it looks like the flow is still not as it should be, they will order a CT scan.  They are hoping not to have to do a CT scan on Hope as the radiation is high and pretty intense for her little body.

One of our major dilemmas right now is Hope's IV lines.  The IV in her head collapsed this afternoon and we are down to only one line in her hand.  This line is looking red and likely won't last too much longer.  They are talking about putting in another central line.  This is a very unsettling idea for Shawn and me. What if she clots again and we aren't as fortunate this time?  Both central lines she's had have caused an infection, why wouldn't this one?  We feel very uncomfortable with another central line going in and wish we had a better option.  They are going to try again to put in a PICC line.   It is still a form of central line but is a bit lower risk for infection and clotting.  Please pray that her IV's will stop failing and that her body will not get an infection, or even worse, another clot.  This entire line situation has brought me to tears many times and feels overwhelming as a parent, there doesn't seem to be a good option.

How are we doing?  We're not doing well.  Shawn is so frustrated about being back in Edmonton after tasting the comfort of home for a mere 72 hours.  I am emotionally numb and feeling beat up by all the bad news and set backs.  We're torn between our two kids, as Sadie is still in Calgary.  We miss her like crazy, but aren't sure how to balance having her here and being available for Hope.  My mom is going to need a heart transplant herself if we go through too many more close calls.  We really need a better day tomorrow.  Please pray for some improvement in Hope's condition.  They are talking about the possibility of extubation as they don't feel it's safe to keep Hope extubated because of the sedation that is required.  Hope responds poorly to the sedation and that puts her at risk for a lot of other problems.  I'm nervous about the tube coming out, but also looking forward to Hope being more comfortable.

We're praying our stay in Edmonton is short, but also nervous to return too early and return a third time.  Being in a hotel is good and bad.  We do have a higher level of privacy, but you can't beat the rate at the RMH!  We're on the waiting list at RMH and are hoping we can get a room before too long.  Thank you for praying for us, I honestly feel unable to pray for myself right now and appreciate you all carrying that on our behalf.

Tuesday, 1 May 2012

Breaking hearts for a precious broken heart

This is Amy's mom again (Charlotte).......

The last couple of days have been disappointing and very stressful, to say the least, as Hope's status has slowly deteriorated, upon arriving back home in Calgary.  I had gone to bed last night with a heavy heart and woken many times in the night to pray for little Hope.  This morning, as Amy was getting ready, I read her a verse....."Who of you by worrying can add a single hour to his life?  Since you cannot do this very little thing, why do you worry about the rest?" (Luke 12: 25-26).  I think I was reading it to her more for my benefit than hers, as I was very unsettled and outright worried (like a true grandmother!) about what had gone on in the last couple of days.  On the way to the hospital for morning rounds, I said to Amy, trying to be an encourager...."it's' going to be a brighter day today!".......

As the day is ending, I can honestly say this has been one of the darkest days we have had.  As we were nearing the hospital, Amy's cell phone rang.  It was Shawn phoning to ask us to please come and pick him up at work as the PICU called, wanting them to come to the hospital ASAP.   When we got to the hospital, the room was filled with various doctors and nurses and medical personnel, all working on little Hope's little body.  The intensivist (intensive care doctor) and cardiologist took Amy and Shawn aside and said that they had discovered a blood clot and that Hope's lungs were failing.  She had been intubated and they were waiting for the transport team to air-lift her back to Edmonton, as Calgary is not equipped with a heart/lung bypass machine (ECMO or life support) should she require it.  Moments later, Shawn and Amy left to make the drive to Edmonton to try and get there shortly after Hope would arrive.  As it turned out, they arrived in Edmonton way ahead of Hope.  As the transport team was transferring her in the PICU, one of her I.V.'s failed and it took them 2 hours to get one placed in her head.  At around 3:30 p.m., Shawn and Amy watched as Hope was wheeled back into the PICU at the Stollery.

Within a short time of arriving, she had had echoes, x-rays, ultrasounds of her head, heart, chest and neck.      Dr. Ross was there, along with cardiologists, a thrombosis specialist, R.T's and several others.  The biggest concern was that the Edmonton team had been told by the Calgary doctors that Hope's blood clot was in her SVC (superior vena cava).  Hope's second surgery (the Glenn) will need to be done at 4-6 months of age and should there be any kind of a blockage/blood clot in that vessel, Hope would not be a candidate for that surgery.  Her only hope, at that point, would be a heart transplant.  The best news all day was that the blood clot was not in the superior vena cava - it was actually in her innominate vein.  After much discussion, it was decided that surgery was not an option - since Hope was only 13 days post surgery and the risk for bleeding was much too high, and the course of treatment would be continuous Heparin to stop the clot from getting bigger, or any others forming.  If that is unsuccessful, the only option would be some very powerful drugs that carry very big risks along with them.  Her heart rate and blood pressure is very low and the first priority is to get her stabilized and take some pressure off her lungs.  They continue to suspect an infection, even though her cultures have come back negative and so they will continue aggressively treating it with antibiotics.  The doctors cautioned that Hope was in a critical state and that her condition was going to be closely monitored as they waited to see how her little body would respond in the next while.  Shawn and Amy decided to stay in the "family room" at the hospital so they could be close by through the night and I am staying at a hotel, since the Ronald McDonald House was full.

We are all totally exhausted and are still in a bit of shock that we are back here in Edmonton.  This is not how it's supposed to go!  Seeing little Hope back on the respirator and looking so puffy and pale is heart breaking.  They paralyzed her body and sedated her for transport and seeing her laying so still was almost more than I could take.  We are thankful for the fact that Hope's clot is not in the SVC and are just asking God to help her lungs recover from the fluid and extra strain, heal her of this infection, keep her I.V's stable, give her good levels/blood gases/vitals and dissolve the clot so that there would be no need for any additional intervention (i.e., the more potent/risky drugs).  It's a lot to ask but our GOD IS ABLE and we are humbly asking Him to miraculously intervene and do a powerful work, for His glory alone.

We know that so many of you are praying and we will never be able to thank you enough.  Collectively, you are surrounding Hope with God's goodness, His love, His protection and His strength and we covet every single word uttered to Him on her behalf.

Please continue praying for this precious little life.  We have only known her for 27 days and yet we can't imagine life without her!