Monday, 30 April 2012

Discouraging Day

I feel like Debbie Downer and hope that you are not all tired of my lack of enthusiasm and upbeat attitude in my recent blog postings.  On Wednesday, Hope will be 4 weeks old and I find this discouraging in many ways.  I want to bring my baby home and be able to do things for her that I have yet to do; change her diaper, feed her, give her a bath and pick her up when she cries.  At 4 weeks old, most mothers have a pretty good routine going with their new baby and have settled into life again.  I want that.

Coming back to Calgary was exciting, as I felt like we were moving in the right direction.  But that came to a screeching halt.  The infection was an irritation that I could deal with, the return to the OR for a chest tube was tough, but the diagnosis of Chylothorax is down right depressing.  It all delays Hope's release from the hospital and that is the hardest thing for me.

Chylothorax is a complication found after cardiac surgeries.  It is a type of lung effusion and results from lymphatic fluid accumulating in the pleural cavity.  It is one more thing that Hope's already "small" heart will have to fight in her body.  Please pray that she will recover from this quickly and have no further complications!  Please pray for strength and encouragement for me as I'm not taking this well and need to keep a positive attitude to get through the long days at the hospital.

As a result of Hope having these complications, her feeds have been stopped once again. I have the most incredible supply of breast milk that La Leche League could even dream of.  Tomorrow we are purchasing a new deep freeze as I will be able to fill it with my milk alone!  The hospital was unable to store the 5 boxes of milk that were sent back from Edmonton and sent 2 large boxes home with us already.  When Hope is sent home one day, there will be a lot of milk from the hospital that will also be returned.  It is frustrating to pump, have so much milk and not be able to feed it to Hope.  The diagnosis of Chylothorax means that Hope will need to be on a special formula for quite some time and not able to have breast milk until it is resolved.

On a positive note, I found out that Calgary now has a milk bank and I should be able to donate the milk we won't be able to use.  At least all the hard work won't end up down the drain!

Another step in the wrong direction

We are in need of some extra prayers today.  Hope is having a rough day and doesn't seem to have improved overnight.  Yesterday she began to drop in her oxygen levels and would turn blue, this has continued today and is of great concern.  An echo of her heart was done this morning and they noticed fluid around her left lung as well.  Although the heart is still looking strong, there is concern that her heart will be over worked with all the added complications.  She is currently having an ultrasound to see how much fluid is there.  Once they have a better idea of what they are working with, a decision will be made about whether or not to give Hope a chest tube.  The tube would be used to drain the fluid and would need to be inserted in the OR.  We're not thrilled about the idea of our little girl returning to the OR, but are also wanting to see her get better and are willing to do what is recommended.  The doctors showed great concern for Hope during rounds and we're feeling anxious about this all.  Please continue to lift us up in prayer, specifically Shawn as he is at work and feels very far away.  If Hope needs to go into the OR, we may go and get him to bring him here as well.

Sunday, 29 April 2012

Hope's New Digs

We had our first full day in Calgary today and are glad to be back.  Hope seems to like her new room at the Children's Hospital.  It sure is an upgrade from her last room - it is so nice to have some space.  In Edmonton, there was another baby only 4 feet from Hope, now she has her own room, with a TV!  

I was exhausted after our return and needed some time to rest up so I could get better and back to feeling human.  Shawn got up this morning and went into the hospital for rounds while I slept.  I felt better when I got up this morning than I have in days.  I was able to take my time in the morning and felt a lot more relaxed and less stressed.

We left the house at noon and picked up Shawn to grab some lunch   After lunch, he came home with Sadie for a nap and I stayed at the hospital for the afternoon.  Hope had a rough day today.  She finally had the central line pulled and we're hopeful that the infection will clear quickly.  Being septic twice in the 25 days since she was born is not a good thing!  The loss of a central line meant new IV lines for Hope.  She has to have two lines, one of them went in the first time but the second one took two tries before it went in.  They were checking her blood sugars and gases along with other things and, as a result, there were a lot of needles and poor Hope was not a happy girl.  

It's a very painful thing, as a mother, to be standing next to your screaming daughter and not be able to pick her up and console her.  When I say screaming I am truly reaching, as her vocal chords are not working properly at the moment and it's more of a screech.  They are going to look into whether the chords were damaged from the breathing tube and will heal quickly, or were damaged during surgery and will likely take more time to heal.  I long for the day that I can pick her up anytime she cries and rock her back to sleep.  Although I have a lot of fear when I think about bringing her home, I also long for that day.

Saturday, 28 April 2012

Clouds on a Sunny Day...

I am writing this from my very own living room in Calgary.  We are all still in shock that we're in Calgary and Hope is finally in the right city!  It felt incredible to leave the Ronald McDonald House and I can only imagine how amazing it will be to sleep in my own bed.  I am beyond exhausted currently and completely overwhelmed.  There are a lot of people in Calgary we would love to connect with but we're going to need some time and are kindly asking that people understand and not drop by.  We don't have to worry about our phone ringing as our home phone appears to not be working, not sure why but eventually we'll look into having that fixed.

Hope was taken from the NICU in Edmonton, but we were not able to travel with her and the team on the plane.  As a result, we started the 3 hour drive back to Calgary after she was already on her way.  My mom spent all morning cleaning the room at the Ronald McDonald House and packing like a wild woman.  I'm sure she'll feel the pain for some time in her body.  We drove back to Calgary, as some wonderful friends so kindly cleaned our house and filled our fridge!  We dropped off our things at the house, had some dinner and then headed over to the hospital.  We truly would not have been able to make the transition so smoothly without the help of our friends and family.

Hope is in the PICU and it feels like a foreign land. We were so used to the hospital in Edmonton and will have to relearn everything here.  Sadly, after Hope arrived in Calgary, they discovered that she has an infection, again!  As a result, she is in isolation until they pinpoint what has caused it and we are also isolating her from any visitors as we really need her to be infection free!  There is a good chance that the infection source is Hope's central IV line and that line will be pulled tomorrow.  This will result in new IV's being put in.  Please pray that the IV's are perfect on the first try and she doesn't go through the torture she did before surgery.

Please pray for me, I am truly burnt out and completely exhausted.  I can't find the energy to answer the phone even if it did work, and feel like I've been up for 24 hours straight.  I need a good sleep and my body to fully heal from my own infection.   I also need these headaches to stop, it is so draining and I want to be with Hope and not feel ill all the time.  Thank you for continuing to care!

Friday, 27 April 2012

The Craziest Roller Coaster Ride!

Today started well, I managed to convince (with the help of some NICU staff) a lactation consultant and nurse practitioner to see me this morning, even though her schedule was full.  We went over to the clinic and she was wonderful, but sadly believes I have a form of MRSA that goes along with mastitis if you're in a hospital environment for too long.  I really don't care what I have, as long as it goes away!  I'm on another new antibiotic, orally and topically and a bunch of other stuff.  I am hopeful that this will FINALLY do the trick and I'll be breast healthy again!!  I still have headaches everyday, likely a side effect of all the antibiotics I've been shoving into my body.  Please pray for healthy breasts and no headaches, probably not something you pray for on a regular basis.

After my appointment we sat down for lunch and I got a call from the NICU, it was almost noon and they informed me that they had decided to transport Hope to Calgary, in two hours.  I panicked and felt extremely stressed, but mostly confused as they had never mentioned this possibility to us.  Shawn had to leave work and get over to the hospital with me, while my mom and cousin Laurel watched Sadie and packed up our lives in Edmonton.  At 1:30 we were told that our transport to Calgary had been cancelled and we were no longer going.  I almost laughed, but then I realized it wasn't funny was going to be like our surgery date all over again!

Supposedly, during rounds our surgeon said that Hope could go back to Calgary because although she still had a lot of different medications, was barely receiving food and had other challenges, she was surgically stable.  The neonatologist jumped on that news and organized everything for Hope to leave for Calgary right away.  When the surgeon was called to sign off on the final paperwork, he said he wasn't comfortable with her leaving today and wanted another day or two.  He apologized for his demented moment and no one questioned him, because he's the surgeon.

At 2:30 the neonatologist came over to Shawn and I and told us that we are now scheduled to go back to Calgary tomorrow.  We looked at her like she was crazy and she explained that the surgeon has approved Hope's departure for tomorrow.  I have no idea what 24 hours does, but I couldn't be bothered to question.  Tomorrow morning, the NICU here will call Calgary to see if there is a bed available for Hope.  If there is, they will ask if the transport team is available to come and pick her up, if they she goes.  If they are not, Edmonton is going to request their own team take Hope back to Calgary, that will be up to someone in Edmonton to approve or reject.  So, we will let you know when we know!

Hope will be transferred back to the Calgary NICU directly and is no more stable than she was yesterday.  Today they noticed that her central line was a little red and pussy.  They have cleaned it and re-covered it, but there is a risk of infection at that site now.  We are strongly praying against an infection that could delay our return home when we're so close!  It could still be a long road before Hope gets to sleep in our house, but we would be thrilled to get back to our own city with her at least.  It would make it much easier for Shawn with his job, and for all of us with our support system.

We have talked to the Ronald McDonald House staff as we want to be sure we receive all of our HOPE cards for the scrapbook.  We'll be leaving addressed envelopes with them to forward our mail on to Calgary for us.  If you have yet to mail your Hope card, we'll be sure to get an address in Calgary for them to go to in the next day or so.  The craziness of today has exhausted us all and we're ready for a good sleep tonight, please lift us up tomorrow as we come to mind, we fear it could be another roller coaster of emotions!

Thursday, 26 April 2012

It must be easier to be a man...

If you've ever read the book, 'Alexander and the Terrible No Good Very Bad Day', then you have a good idea of how parts of my day played out.  I hate to complain, because Hope had a good day, but seriously?

Shawn and I went to the hospital together this morning.  I went to the IV clinic and he went up to the NICU.  I planned to go up and sit with him when I was finished.  I first went to see the doctor again and was told that my blood cultures came back and I have a staff infection, on top of the mastitis.  They took new cultures today and we'll find out on Saturday if the antibiotics have taken care of the staff infection, since they don't seem to be doing much for the mastitis.

After this, I went over to the IV room and they started my meds.  It was hurting almost immediately but I didn't want to be the wimpy girl that whines about her IV.  When I actually started to cry, I decided to wave over a nurse.  She looked at my arm, gasped, and then told me I'd have to scream through what she was about to do.  She then pushed hard against the ball that had formed under my skin and painfully pushed all the fluid back up the IV line.  Once she was finished with her torture treatment, she explained that the IV had fallen out of my vein and they had pumped the meds into my tissue instead.  They then took out the line, restarted it in my other arm and began the infusion again.

By the time I was finished, Shawn had already headed out for work and I was at the end of my rope and ready to sit in a corner and cry for a few hours.  Since the hospital floor is a little 'unclean', I decided to go upstairs and sit with Hope instead.  Thankfully, both of my infections are not contagious and it's completely safe for me to be in the NICU with Hope.

Rounds started late today, so I was able to be there for the rounds and get the update on Hope.  They have decided that Hope likely does not have an infection in the stomach, but they won't know for sure until the cultures are back tomorrow.  They feel that the blood and such were likely from her nose, swallowed after her breathing tube was removed.  They have restarted her feeds through the feeding tube, at this point, but she's only receiving 1ml an hour.  They have to be very careful when feeding an HLHS baby as their stomachs do not receive a lot of blood, and the blood it does receive is not the good blood in the body, as it will always go to the most important organs first.  There is a high risk of infection and they are extremely cautious.

We did have a good step forward with Hope as they weaned her off her last heart medication!  She is no longer being assisted by any heart medications directly, even though she's on a lot of medications still!  She is still retaining a lot of fluid that they continue to work at getting it off her little body.  We're hoping these will come off soon and she'll be a bit less puffy.  She slept most of the morning while I was with her so I didn't pick her up and disturb her.  We are careful not to move her too often as the incision is still very tender.  As a result, we only move her every few hours and don't pass her back and forth at all.

In the afternoon, while I was in the NICU, I realized my "new" IV line must have been failing because I was feeling very uncomfortable.  I had to go back down to the outpatient clinic, wait to be seen and have the line pulled.  Not sure what will happen tomorrow when I go for my IV infusion, I'm guessing they'll start an IV all over again if I can't convince them to put me on oral med.  The IV meds don't seem to be doing anything fantastic for me anyway.  I'm trying to get into a lactation doctor but don't have an appointment until Tuesday.  The antibiotic I'm currently on gives me terrible headaches that start after the infusion and get worse all day until I feel horrible at night and get to go to sleep.  Please pray they listen to my pleas and do something more "user friendly".

I received some more Hope notes today!   It's one of the highlights of my day and it's not too late to send one if you haven't yet!  I look forward to showing them all to Hope and being able to document the army that prayed for her as she grew, inside the womb and out.  My prayer request for Hope is that she would progress in her post surgery healing and get us back to Calgary.  My personal request is for complete healing, I feel really attacked and broken right now.  I'm losing my mind as far as my health is concerned and need some relief quickly.   You don't realize how much you can take, until you keep getting more put on you and you don't fall over by some miracle!

Wednesday, 25 April 2012

.....And one step backwards......

Shawn came home from early rounds this morning to report that Hope had not had a very good night.  She began vomiting bile and then blood clots and then frank blood.  They took an x-ray of her stomach but didn't find anything suspicious, for which we are thankful!  They started her on antibiotics prophylactically and discontinued her tube feedings of breast milk.  They have done cultures to make sure there is no infection and have increased her morphine, as they were feeling that she may be in pain.  The neonatologist today explained that often when there is minimal oxygenated blood going to the stomach for a prolonged period of the time, the stomach can "get sick" and you have to back off on feeds and just give it a rest.  They had just upped Hope's feeds yesterday so possibly the extra was a bit too much for her.  They are watching her carefully and keeping a close eye on her.  If her cultures come back negative, then they'll discontinue the antibiotics.  Please pray that there is nothing else going on that could be more serious and that Hope's little stomach will heal and be able to tolerate her feeds when they are re-introduced.

I  had another IV infusion of antibiotics at the hospital today and this is the first day since this mastitis began that I haven't had a fever!  I still feel lousy but we're definitely moving in the right direction! The best part of the day was being able to go up to the NICU after the IV and hold my precious babe after 3 days of not even seeing her!  I got to hold her for a whole hour before my headache got worse and I simply couldn't stay any longer.  It was sure hard to leave.

I wasn't able to make it back up to the hospital, as I didn't want to push myself and miss out on seeing Hope tomorrow.  I go back for IV infusion tomorrow morning at 9 am and am hoping that this will be the last.  Please continue to pray for healing.  It's very discouraging to be feeling ill while Hope is in such great need.  I will say, she looks so much better without her breathing tube!  It was such a joy to listen to her little noises and her crying today as I held her.  She has a voice once again!  I can't wait to hear it again tomorrow.

Tuesday, 24 April 2012

The Infection that would not die!

Today was my third day of feeling terrible.  At 8 pm last night, Shawn took me back to the ER as my fever just would not break after 48 hours on the antibiotic.  The doctor put me on IV antibiotics and told me to return to the hospital in the morning for my next dose.  I'm not a fan of having an IV in and the idea of having one left in for days is somewhat unsettling.  This morning I woke up with a fever of 102 and headed over to the hospital.  They gave me the second dose of the antibiotic but, after the doctor came in to see me, she decided that if it was working my fever should have broken after the first dose.  So, she switched my antibiotic a third time and started me on another IV one.  After that I was taken for an ultrasound to see if there was an abscess that could be causing the resistance to the medication.  Nothing was found in the ultrasound, so they sent me home and said to return tomorrow for my medications and on Thursday the doctor would see me again to see if it was finally working and I was getting some relief......sheeeesh......this is not fun!

My mom wheeled me up to the NICU to see Hope for the first time in over 60 hours.  She looks so much more comfortable without her breathing tube in and is just on oxygen now, which is much more comfortable.  She has 10 more lines, IV's and tubes to go before she's wire free!  She also had her last chest tube removed.  This seals all the open wounds and greatly lowers her risk of infection.  We were told we were finally able to hold her, but I was too sick to keep sitting up and had to get home to bed instead.  My mom was the first one to hold her and had a good 2 hour snuggle with her this afternoon.  When Shawn returned from work, he went over to the hospital and is there now having a snuggle with his girl after a long wait.  I am praying that this fever disappears and I feel up to going over tomorrow.  I'm  starting to feel very frustrated!

We've been thrilled with Hope's progress and truly feel like she is an extreme fighter.  We are also trying to be realistic and remember that we are in a critical place for the next 6 months.  Most HLHS children that don't make it are not lost during the surgery stage, they are lost between the first and second surgery because of heart failure or minor illnesses that their little hearts aren't strong enough to fight.  We are praying that our little girl will fight through to the six month mark and are hoping that you will all stay with us as we pray through this continued critical time.  The next six months will be difficult for me socially, keeping Hope from getting sick will mean not attending a lot of events that I'll want to, having to turn sick people away from our house and limiting how much we pass our little one around for snuggles with others.  These things will not be easy and we truly hope that our friends and family are understanding through this all.  The doctors keep telling us that heart babies take two steps forward and one step back.  Hope continues to step forward and is rarely stepping back.  As a result, we are always a little on edge and praying that she continues to make progress in her recovery and doesn't take steps back at all.

Over the last few days we've started to receive Hope notes for the scrapbook.  We have 21 of them so far and have so enjoyed reading them and seeing where they arrive from.  So many people we don't even know are praying and this is such an encouragement to us.  Being stranded in my bed, it has been a joy to receive these letters and distract myself momentarily.  Thank you for taking the time to send them, we will cherish them as Hope grows up and we can tell her all about the people who surrounded her in prayer as she grew.  

Monday, 23 April 2012

Back to the NICU!

Hello!  This is Charlotte, Amy's mom.  Amy is still not feeling that well, so I'll be giving you the update today!   Her fever has come down but is still low grade and she is now dealing with a migraine and a whopping case of heartburn.   To say the least, Mamma is not happy!  Thanks for your prayers for her, I know she is feeling so frustrated that she cannot be at the hospital with little Hope right now.

Today was a big day!  Hope returned to the NICU!  This is always a good step, as it shows that the doctors don't think she'll be needing the heart/lung machine, which is only available in the OR and the PICU.   They removed her chest tube today and also her Foley catheter.  She still has approx. 12 tubes/wires/lines attached to her body, so we've still got a way to go!  Her x-ray this morning showed that her lungs are still a bit "wet" so they decided not to extubate her, as they still want to move slowly, so not to push her more than she can handle.  If her lungs sound clearer tonight, they may proceed, or wait until tomorrow.  She was quite "puffy" when they moved her to the NICU and they said they are working at getting more fluid off her body.  All in all, they are pleased with her progress so far and happy that she is making steps in the right direction.

I spent most of the day just sitting by her bed, touching her, talking to her and singing to her.  Shawn's Aunt Edith came to get Sadie for the day so that I could be with Hope and Amy could be in bed!  Hope was awake a couple of times and it was so good to just sit and see her so alert and less sedated.  She is still on the Morphine but they are reducing that gradually.

Please continue to pray for Hope.  She has done well so far but we are reminded daily that she still has many obstacles to overcome and a long road yet ahead.  We are just rejoicing in every step and thanking God for each and every bit of good news!  Thanks again for being a part of this journey.....

Sunday, 22 April 2012

Another bit of news!!

Amy has asked me to update the blog as there are still some internet problems at the RMH...its Amanda here (one of Amy's Calgary friends).  Both Amy and Shawn are so thankful for your continued prayers and support, and have a few pretty exciting things to update you on...

Today was another great day for their precious little Hope - she had a couple of her more invasive lines removed, her LA line (this measures the pressure within the heart) as well as her PD line (this drains fluid from her body).  Earlier in the day the staff had seen some blood pressure drops, but eventually determined that they had been due to faulty lines, and thankfully not Hope herself.  So, they moved forward with the plan, removed the lines, gave her another blood transfusion, and she's done very well.
There had been an idea to extubate her today, though the doctors felt that with all the progress, she had an already big day, and are now hopeful that tomorrow will be the day she can finally have her breathing tube out.  This would be such a blessing both for Hope and for her parents - finally able to see her beautiful face again!!

Hope is doing very well and getting stronger everyday...the power of prayer is so evident and so amazing!  They're already talking about having her transferred back to the NICU as soon as a bed becomes available!!

While the day did indeed have its wins, there were also some very real struggles for Amy - she awoke this morning with a raging mastitis (for the sake of all the men reading this, I won't get into too much detail), and "feeling like death".  Its excruciatingly painful, and even with starting antibiotics, it wasn't until this evening that she was rid of the fever and beginning to feel a bit better.  The infection and awful feeling kept her away from Hope all day, and she can't wait to get back to see her baby again.  Shawn also had very limited time with Hope today as the PICU had been closed to all visitors while another child was having some sort of procedure done.  It is clearly God's timing that Sadie returned home only a couple days ago, helping to relieve the awful feeling of being away from Hope for so long.

Please continue to pray for Shawn as he'll be working 1/2 days beginning tomorrow.  This will be difficult for him for sure, but a welcome change from all the waiting over the last while.  The office is about 20min away from the hospital, so please continue to pray against any problems that would make him have to rush over.

As for big sister Sadie, she is trying to adjust to being back in Edmonton again, and becoming more familiar with her new little sister.  She's been having a hard time sleeping, and a difficult time with all the changes in her life, so please pray that she'll soon feel more at home and secure.

Thank-you all so much for your continued prayers, please don't stop.  We all look forward to further updates on little Hope and her progress!

Saturday, 21 April 2012

Sorry for the delay!

We've had some problems with the internet at the Ronald McDonald House and I haven't been able to update the blog for the last 48 hours.  I am currently sitting in a McDonald's down the road in order to send out this update - that's commitment!

Hope is doing very well and the medical staff continually comment on how impressive she's been after surgery.  We are feeling so blessed by the progress Hope has been making since her surgery.  She has now been weaned off a couple of her medications, they've turned down her pain medicines and are talking about the potential of extubating her tomorrow!  We are trying not to get too excited about this just in case, but we would absolutely love to see her adorable face again.

Yesterday, the surgeon came back and closed Hope's chest. This was a great sign, as it means they don't see any sign that Hope will need the heart/lung machine.  Once they pull out the line that runs to Hope's atrium that measures the pressure, she'll be cleared to transfer back to the NICU, when a bed becomes available.  They planned to pull the line today but weren't able to after an IV in her hand failed and they didn't have enough lines to give all her different medications.  That's hard to believe when you see how many lines they have coming out of her right now!

We would be thrilled if they removed her breathing tube, her atrium pressure line and lowered her morphine consumption again.  Hope is currently not on any heart medications, as they took her off her last one today.  This was a big step for her and we were thrilled.  The doctor told us that if Hope is extubated tomorrow, it will be the earliest HLHS post operative extubation he has ever seen.  That is proof of the power of prayer right there!!

Hope, being so stable currently, makes me feel more relaxed and allowed me to leave this afternoon and go home with Sadie to take a nap.  It was a great feeling to get some extra rest and to have Sadie back too!  She was so excited to see her baby sister again and seems to understand that Hope is her sister.  Hope still has a lot of openings on her torso from the chest drainage tube, her PD catheter and her LAP line.  We look forward to all of these being removed as it will greatly lower the risk of infection and make it safer for us to bring people into the hospital to meet her.  While she is still exposed, we feel like it's not wise to introduce new germs into her world.  

Thursday, 19 April 2012

24 hours down and a lifetime to go!

We have reached the 24 hour mark and are thankful that Hope is fairly stable.  The 24 hour mark is not a miraculous number in any way and doctors are sure to remind us that the battle is far from over.  The first 24 hours can be the most critical after surgery, unfortunately we could come across problems at any time.  Watching the doctors work with Hope is a bit of a guessing game, they give her a little more of this and a little less of that.  Then they wait to see how she responds and tweak it all again until they think they found the perfect formula.  Some things work for a few hours and then need to be changed again, there were a lot of changes made today.  Overall, she is fairly stable and keeping her numbers in decent ranges and they are pleased with how well she's done thus far.

At this point they are hoping to close her chest at some point tomorrow, this plan was made while she was still on a PD catheter that is used to take fluids out of their little bodies to keep the swelling down.  She wasn't tolerating the catheter well and was taken off it this afternoon.  She's not looking too swollen at this point, if that continues they may be able to close her chest anyway.  If her swelling gets any worse in the night, they may have to postpone the chest closing until she can tolerate the PD catheter.

Our darling Sadie returns to bless us with her laughs and smiles tomorrow night, we are so excited to have her back in Edmonton with us.  We know that having her here will force us to pull ourselves away from the PICU and that will likely be more healthy for us all.  We have been pretty good at taking breaks and balancing our time at the hospital.  Hope has one on one care with a nurse and this makes us feel quite comfortable when we're not with her.  I think it's nice for the nurses too, they constantly have to ask you to move and I'm sure when we're not there, they get a lot more done!

Keep on praying, we can see the power of prayer in our little Hope's life.  We look forward to telling her all about the army of prayer warriors that walked with her.

15 Hours Post Op

Warning: I have included some post op photos at the bottom of this post, they are difficult to look at and I didn't want to force anyone to see them that would rather not.  These are fairly tame - we have some close- ups that would make even the strongest man cry.

Hope finished in the OR just 15 hours ago.  We were getting anxious near the end as it was taking so much longer than anticipated. It was a relief to hear she had finished in the OR and although they had to rebuild the aorta twice, she had done well and was no longer on the heart and lung machine.  The surgeon told us that if her heart showed any signs of weakening, she would be put back on a heart and lung machine through the night.  We are thankful that this has not happened, what a miracle!

When Hope arrived in the PICU, she was surrounded by doctors and other medical staff.  It was difficult to get close to her and we weren't able to sit down.  When we realized she was decently stable, we made the decision to go back to the RMH and get some sleep.  The nurse assured us that they would call if anything changed at all.  We slept, only by the prayers of God's people, and when I woke up at 6 to call and check on Hope, the nurse said she'd had a "surprisingly good night".  We were so thankful for such a strong start.  We realize we're still in a critical time and that things can change quickly, but we praise the Lord for the progress we've had thus far.

During morning rounds, they again confirmed that Hope was doing well and had been weaned off some of her medications.  There was even talk of her chest being closed tomorrow.  This would be a huge step in the right direction and we pray she is strong enough to have this done.  It takes some of the risk for infection away and shows her progress as well.  They have lowered her oxygen intake a great deal.  This is getting us closer to her being extubated and us finally saying goodbye to that tube we dislike so much. 

We've been able to sit next to Hope more today.  She's on a big bed and looks so tiny.  Just before we left to write this update, Hope had her eyes open and was looking at us all..... what a gift!  We continue to covet your prayers as we're still in a very critical time, but praise the Lord for the progress we've seen so far. 

We definitely feel the prayer that surrounds us and we are feeling pretty at peace with everything.  It's difficult to see Hope covered in wires and knowing that her chest is covered in open wounds, but we are thankful that the doctors were able to start rebuilding our precious girl's heart. 

Here are the pictures for those that are able to look at them....

Wednesday, 18 April 2012

First surgery complete!

Just an update from Amy's mom:
Dr. Ross just spoke to us and said that Hope's surgery went well.  They had to patch her aorta twice but it seems to be functioning well at this point.  He said often, with aorta's as tiny as Hope's, there is a problem with the coronary artery but hers seems to be doing very well, praise the Lord.  She is not on the heart-lung bypass machine at this moment but they may need to put her back on in the night if she needs it.  He reitterated that the next 24 hours are critical and that she is, by no means, "out of the woods" yet.  

Thank you all for praying and your continued prayers are so needed!!!  We are rejoicing that she has made it through surgery and are asking God to continue keeping His hand of protection on her as we walk through the next 24 hours.

After almost 8 hours of waiting, we are exhausted, but elated at the same time!  We will probably take shifts staying by her bedside tonight.  Will update you and let you know how things are going.

Still in the O.R....6 hours later

It's Lindsay, Amy's sister blogging again. Amy and Shawn are still anxiously waiting for Hope to come out of the operating room. Understandably, the waiting is agony. There is no one to come out and update them on how things are going or give them a time frame of how much longer it will go for. They covet your prayers still, please don't stop! They will let everyone know as soon as Hope comes out of surgery.

She's in the OR!

Hope was taken into the OR at noon today and her surgery is now underway.  We've been told to wait outside the PICU in 4 hours and wait for Dr. Ross to come and update us on how the surgery has gone.  We've been warned that 4 hours is a total guess and it could take 6 hours, so we'll try to stay calm no matter how long we need to wait.  We truly feel the prayers that are going out for us around the world, we truly have a strong sense of peace.  Although there were tears as Hope was wheeled away, we still felt very at peace and were fairly composed.  Ten minutes before they took Hope, she opened her eyes and was looking right at us!  This was truly a miracle with the sedatives that she's on, we will cherish those moments of looking into our little girls eyes before she went into surgery.  This is the first of at least 3 surgeries, only the beginning of our journey but we know that God will carry us through to the end.  We'll update you all as soon as we get a chance, thank you for praying.

Tuesday, 17 April 2012

Jumping the gun??

I hate to post that surgery will be tomorrow, only to have to recant it once again!  But, I am saying in faith, surgery is booked for tomorrow and we have signed the consent, and spoken directly to the surgeon.  Hope is scheduled as his second case tomorrow and should be taken into the OR around 11am.  The surgery will take around 4-5 hours, depending on how things look when they get in there.  Would you join us in praying for our precious daughter, the surgical team and everyone else involved from 11-4 tomorrow?  The next few days will be very stressful and will likely be full of a lot of ups and downs.  We are going to need a lot of strength and endurance to walk through this time with Hope.  The first 24 hours post surgery are most critical in her survival, so please continue to lift her up as we wait out these painful hours with her.  We'll keep you posted as best we can in the crazy times ahead.

Monday, 16 April 2012

Notes for Hope

We know that people around the world are praying for Hope and we appreciate it so much.  We want Hope to grow up knowing how many people prayed for her as she grew in the belly and after she was born.  Since we’re feeling so down right now, we thought it would be a great time to start working on something for Hope when she’s older.  For anyone that is willing, I’d like to make a scrapbook for Hope with notes from all the people that have been praying for her around the world.  To make it more beautiful, if anyone is willing to hand write a note and mail it to the Ronald McDonald House, we would be so grateful.  I would love to receive them as a source of encouragement to us, but it will also give me something to work on at night for Hope and feel like I’m doing something for her when I’m not with her. 

If this is something you’d be willing to do over the next two weeks, please write and mail the note to:
Shawn and Amy Koslowski #329
c/o Ronald McDonald House Northern Alberta
7726-107 St. NW
Edmonton, AB
T6E 4K3

Thank you in advance for helping us show Hope how her every breath was covered in prayer.

Running on Empty

Well, it's Monday and it's a new week.  And, in our world, that translates into a new rotation of staff, with different neonatologists, different cardiologists, different nurse practitioners, different nurses, different respiratory therapists, different social workers and, last but not least, a different surgeon!!  And....along with those different neonatologists, cardiologists, N.P.'s, nurses, R.T's and surgeon are a totally new set of protocols, methods for procedures, preferences for treatment and criterion for pending surgery.  Today, was a learning curve for what this new set of staff means when it comes to a date for Hope's upcoming surgery.  

The day began with Hope's I.V. lines collapsing again and requiring immediate intervention.  Since the only way she is able to receive nourishment, fluids, sedation and her critical medication that is keeping her alive at this point, is intervenously, it is imperative that they have at least 2 lines in at all times and working well.  Finding a good vein is a challenge and poor Hope has had her hands, arms, feet and head poked on numerous occasions, all in search of a good vein.  Today, 6 different people tried a total of 14 times before someone was successful at getting an IV in Hope's foot.  As a mom, this is pure torture to watch and I often have to look away as I sing to her and hold her head while she cries with no sound.  A PICC line (central line) would be the route to go but because she got her infection from the central line in her umbilicus, they are hesitant to do this until she's in the OR.  

Today I would have made my Grandma Kirk proud.  She has always been great at advocating for what she or her family needs and making sure you hear her.  We are so tired of being told something different by every doctor that comes by.  I finally had enough of that today and had a bit of an emotional meltdown.  I seem to have kicked up a bit of dirt in the NICU today and by the time we left, every doctor knew that we were DONE and wanted some real answers.  So, after tracking down the surgeon, we were told that surgery is on the schedule for Wednesday morning.  This was not what we had hoped to hear and we're not happy with the longer wait, but unfortunately we don't get a lot of say in this matter.  Please pray that Hope stays infection free over the next 36 hours to be sure we don't make this journey any longer.  

We were told today that the surgeon is not on the OR schedule for tomorrow.  If he gets some OR time, we're praying that Hope would be his first priority.  Shawn, my mom and I are all at our wits end with this waiting game and the run around of information.  I spent the majority of the day in tears and I have a feeling that will continue for the rest of this week.  Shawn is going stir crazy and seriously needs to play a game of soccer or ultimate frisbee, if anyone from Edmonton likes organizing that sort of thing...he would LOVE to attend!  I wish I had the energy at the end of the day to hit the gym and get some good endorphins going through my body.  Sadly, at the end of the day I feel like talking to no one, sitting in our room and eating!  Not sure how well that's going to work for my post baby body, but I don't have the ambition to care at this point.  Maybe a personal trainer can start working with me when I get back to Calgary :) .  

We're going to try to take some time away from the NICU tomorrow, we know that surgery isn't going to happen and we need the break.  Shawn is hoping to go for a long bike ride on his own and I'm hoping to get some sleep so I can pull myself together emotionally.  We really appreciate the cards that have been sent to the house here, thank you to everyone that has sent those.  One day when my life is less exciting, I would love to sit down and thank you all personally!  Thank you for standing with us, even on the hard days when we're really down and feeling really negative.  

Sunday, 15 April 2012

Pushing Forward

Today was rough, it began with such disappointment and it was hard to move past that.  My mom went into the NICU in the late morning, but Shawn and I went out and tried to do something 'normal' to give ourselves a real break.  We wandered around the antique mall and made a trip to Winners.  It was good to do something more normal for a couple of hours.

We spent the afternoon at the hospital with Hope and into the early evening.  She had a period of wakefulness, for over 40 minutes, that was such a treat for us and a real blessing as she rarely opens her eyes these days.  Hope was given a blood transfusion this morning because her blood levels were low after all the blood they've been drawing from her little body.  Her colour improved and she seemed to perk up after the transfusion.  Both of her IV's failed today.   They shaved a new portion of her hair and put another IV into her head and moved the one in her arm to her hand.  It is terrible to watch them do this to he.  I held her face and sang to her with my eyes closed as I can't handle to see the pain in her face.

Shawn and I are at a hotel this evening.  We're taking a break from the Ronald McDonald House and the constant stimulation there, as we're exhausted.  We'll be up early tomorrow and at the hospital for rounds.  At 6:35 am we'll have blood cultures that will have sat for 48 hours and we'll know if the infection is fully gone at this point or not.  If we receive a negative result, a surgery date and time will be set as the surgeon, Dr. Ross, wants the surgery to take place sooner rather than later.  The heart medication that Hope is on will slowly weaken her lungs and we need to have her off this drug as soon as we can.

At this point, our schedule is such that we never know where we're going to be at any given time, usually we're either coming or going from the hospital.  It has become increasingly difficult to make any plans or arrange times for visits.  Some of you have mentioned that you'd like to drop something off at the house for us, and we want you to know that we are very grateful for your kindness.  Even if we're not home, the office is open all day and they'll be sure we receive it.  We truly don't have the energy to sit and chat right now.  Due to Hope's infection, we are cautious about the risk of additional illness before surgery or post op, as the risk of re-infection is too high.  After Hope's surgery, her chest will be open for a few days and the infection risk is extremely high then.   As a result, we won't be allowing anyone to come in and see her, it's just not worth the risk.  We don't mean to offend anyone, we simply have to protect our fragile little girl.

We have been encouraged today to hear of all the people around the world that are praying for Hope.  It was incredible to hear that our entire church was praying for Hope this morning.  We so appreciate these prayers and beg you to continue praying.


We were woken up around 1am by the doctor in the NICU, she was calling to let us know that Hope's surgery for today had been cancelled after the blood cultures grew bacteria, 44 hours after being taken.  I have finally reached the point of no longer being able to say that I'm frustrated, I'm angry.  My heart believes that God has a plan and there is a reason for the numerous delays, but my mind does not understand and my emotional tank is on empty.

It's already 11am and we have yet to make it to the hospital.  I feel no anger or frustration with Hope herself and I feel guilty that she misses out on time with us as a result of our situation.  I just can't imagine another full day sitting in that horrible place and having such a difficult time holding her.  The fact that her breathing tube is still in makes this all so much worse.  I wish I had put up a huge stink and tried to force them to remove it on Friday, we could have had a weekend of snuggles with our little girl.

I don't know what to ask you to pray for, maybe sanity?  I'm in shock that this is taking so long and I feel like I can't take it, but still want what's best for little Hope.  We worry we'll be stuck in Edmonton until June with all the delays and that makes it more difficult.  Shawn feels pressure to get back to work after taking the last 2 weeks off, but wants to be around for the surgery...whenever that is.

Pray that I survive today, one day at a time.

Saturday, 14 April 2012

The Night Before

We are less than 12 hours from Hope's long as she doesn't get bumped for an emergency transplant or something else that couldn't be avoided.  After dinner tonight, Shawn and I went back over to the hospital to pray over Hope and pack up the things around her bed.   They want you to remove all of her personal effects to be sure they aren't lost, because after the surgery she will go to the PICU (paediatric intensive care unit), as they don't have any ECMO machines in the NICU (heart-lung machines).  Hope was fairly settled but still very annoyed by the breathing tube.  We're really looking forward to the day they remove that tube post surgery.

We are all exhausted and emotionally spent.  We have to push each other to get back to the hospital and to get up and do anything.  We all just want to crawl into bed and stay there for an entire day.  We know that tomorrow is going to be a very long and stressful day for us, as a result we're hoping to have a great sleep tonight somehow.  We came back from the hospital to find a basket full of snacks and other useful things from a friend - it will be great during the surgery!  It's the simple things that are so helpful during this time, we don't have the energy to be social but feel connected to people through their kindness.

I'll keep this short as tomorrow morning we need to be in the NICU by 7:30.  As we enter this next phase in our journey, please pray for strength and peace.  Pray that the surgeon is well rested and prepared for Hope's surgery.  We are so blessed that he's willing to do it.  Pray for Hope, that she would get rest tonight and be strong for her surgery.  We love our new little girl like crazy and want to see her shock the doctors with how well she does through this all.  Thank you for praying, don't stop!

Getting closer!

Amy asked me to update you all on what the decision for surgery was - it's Amy's mom here (Charlotte)..... The surgeon came in this morning, after being called in at 4 a.m. with another emergency. He has decided to take the entire day off and has handed off a minor surgery he was scheduled for so that he could rest from the hectic couple of days that he has had. He has consented, however, to do Hope's surgery tomorrow morning around 8:30 a.m. He flies out to Europe for a conference, where he will be a presenter, later on tomorrow evening.

 Shawn and Amy sat down with him after rounds and discussed Hope's surgery and signed the consent. He explained to them that the major challenge for her surgery is her tiny aorta, which he says is less than 2 mm. One of the things that he is going to be doing in the surgery is disconnecting her aorta and re-attaching it to the right side of her heart which is her only pumping chamber. There is a time pressure in doing this, so please pray that he will have the skill and expertise to accomplish this quickly and smoothly and that it will remain open and allow adequate blood flow for her tiny heart. He said that the first 24 hours after the surgery are most critical, so if you could please pray during this time that she will tolerate the surgery well and stabilize quickly and easily.

 It is disappointing again to find out that surgery is delayed but we are grateful that the surgeon is willing to do the surgery before he leaves! There is still the possibility of an emergency being flown in between now and then and changing the plan so we are hesitant to count on anything at this point! The good news, regardless, is that Hope's cultures have come back negative and we are rejoicing with the fact that she is finally free of this infection. Please pray for Shawn and Amy. They are tired, frustrated, anxious and so ready to get this surgery going! Pray that the day goes quickly and that they will be able to rest up for the stressful days's hard to imagine even more stress! We cannot thank you enough for standing with all of us in these difficult days. We are just leaning on the Lord for His strength and placing little Hope in His capable hands. Your prayers mean the world to us - thank you for interceding on behalf of this precious little girl!

Friday, 13 April 2012

Holding our breath...

We have another potential surgery date for tomorrow.  Hope's central IV lines that were potentially causing the infection were removed at 11 am yesterday.  At 4 pm they ran blood cultures on her once again, and no bacteria has grown on these cultures in the last 24 hours.  The doctors would like to see a full 36 hours with no bacteria before they will decide on the surgery being a safe option for tomorrow.  As a result, we won't find out if surgery is a go until tomorrow morning.  The cardiac rounds will take place at 9 am tomorrow morning.  This is when we should find out if they are going to put Hope on the schedule for that day and when.

Today was still really tough.  I felt antsy and detached while I sat in the NICU this morning.  I made sure to get out of the NICU a few times to try and get away from feeling burnt out.  It's hard because we can't schedule anything as we don't know what the day holds or when doctors will want to meet with us or when the surgeon will come by.  When we want to hold Hope, we have to let our nurse know, she then finds another nurse and a free respiratory tech and when they can both find a free moment, Hope is transferred to our arms.  Some times it takes over an hour before they are able to coordinate this.  It's too difficult to schedule a time that we'll be free when we're waiting on others and have no guess at what each day holds.  As a result, we're quite isolated.  This may not be a bad thing most days, as I don't have much to offer anyone else at the end of the day.

We were able to hold Hope today, and it was great to have her in my arms again.  It was also painful to watch her gag on her breathing tube and try to cry without success.  She looks so uncomfortable, although I would love her to open her eyes, I feel better when she's sleeping as she looks more content.  We plan to go back tonight to spend some more time with her before we head off to bed.  Tomorrow morning we'll be at the hospital by 8:30 to be sure we don't miss cardiac rounds and to spend as much time with Hope as we can, just incase she does make it for surgery.  We'll let you know!

Thursday, 12 April 2012

My Breaking Point

I often wonder if I've reached my breaking point, but then life becomes a little more stressful and I realize I still have strength to stay standing.  I am emotionally spent, I feel completely dry and like I'm drowning at the same time, I didn't know this was possible.  The emotional roller coaster is underway and I keep waiting for it to stop so I can get off!

One of the difficult things about community living is that I can't stop myself from making connections with other mom's and developing a love for their children that are suffering like Hope.  We moved here and quickly connected with another Calgary mom that was also carrying an HLHS baby and due around the same time as me.  She delivered a baby girl last night and her little girl, Holly, was rushed in for an emergency Norwood this evening (that's the first surgery Hope will have).  It is so difficult to see them hurting and walking such a tough road.  After they told us, Shawn and I sat down with my mom and prayed for this family and their precious little girl.  Please join us in praying for little Holly and for her surgery that is taking place as I write this.

Today was a difficult day from the start, I went to rounds this morning on my own as my mom was attending BSF and Shawn was dealing with returning the rental car.  I came in to find Hope had an IV in her head and some of her hair had been shaved off.  They told me the blood cultures were positive again and my heart sank, I felt defeat for the first time in this situation.  The doctor came over and explained that the lines in Hope's umbilicus were likely housing an infection.  Although she has been on antibiotics and the infection is not spreading through her body, they were drawing blood at the very source of infection.  He had ordered the lines to be removed and two IV's to be put in.  The drugs she's on do not mix and need to go through two different lines.  The second line was later placed in her hand after a failed attempt in her foot, watching them poke her and the pain on her face brought me to tears and broke my heart once again.  I called this evening to check in was told the line in her hand failed and was put in again, higher up in the arm I believe.

The nurse was supposed to take cultures one hour after the lines were removed to see if the lines were the source of infection and to help us hurry up and clear her for surgery.  She was apparently not listening too closely.  Over 4 hours later we asked if the cultures had been taken and were told they would not take place until tomorrow morning.  I cried again and made it clear that I was not okay with this, the nurse had the doctor come over and was informed that he had already ordered the cultures and she had failed to take them.  It was a good reminder that we need to be listening carefully and standing up for Hope to be sure she gets what she needs in such a busy place.

I spent the first 7 hours of my day in the NICU today, this is not a good idea.  The constant beeping of all the baby monitors and alarms that sound every second are truly annoying.  There is no privacy and the chairs are horribly uncomfortable, especially post delivery!  I felt myself burning out and needing to get away, thankfully I had a surprise guest and was able to distract myself for some time in the evening and refocus before we start again tomorrow.

We know that God is in control of the timing for our surgery, but we truly feel overwhelmed by the waiting and will need the strength to continue this waiting game.  We were told today that the surgeon we had hoped would perform Hope's surgery is going away on vacation next week.  Unless he is working this weekend, we'll have another surgeon operating on Hope.  We're trying to roll with the punches but feel like we're being punched in the stomach these days.

One exciting thing we heard today, was that Hope's struggles to breath were likely caused by the infection and not a weakening of her lungs.  As a result, if surgery is not taking place until Monday, there is a chance that they'll remove her breathing tube.  This would be a huge blessing and a massive encouragement to us.  It would allow us to hold her more easily and spend time rocking her in the NICU. We weren't able to hold Hope at all today and that makes the 7 hours in the NICU very tiring as you sit and stare at her.  We were also blessed to be told today that Hope's test results have come back and she has no genetic abnormalities.  Praise the Lord!

Please join us in praying that the breathing tube would be successfully removed and that Hope would no longer need it, that the infection would be fully cleared and that removing the lines was the answer.  Please also pray that we would get a date for surgery so we wouldn't have to continue wondering when it will happen.  Thank you all for your dedication in praying for our little girl.

Wednesday, 11 April 2012

Painful Postponements

As many of you have already learned on Facebook, Hope's surgery has been cancelled for tomorrow.  Her blood cultures came back positive for bacteria again and, as a result, they are not able to operate tomorrow.  She has been on a strong antibiotic for the last 24 hours, they ran her blood cultures again this morning, so we'll find out tomorrow if they are negative or positive.  We are praying that the results are negative and there is still room on the surgery roster for Friday.  We should receive some more information tomorrow and will keep you all posted.

This is getting really tough and we're feeling drained emotionally.  You get yourself psyched up for the surgery day and it's hard to find out at 3pm that the surgery is no longer happening the next day.  At this point we just want to get it over with, it's difficult to hold Hope and we spend the day just sitting next to her and waiting.  This morning, Shawn and I slept in while my mom attended rounds so we could be ready for the least we had a good sleep!  We really hope we don't have to wait until Monday for surgery and are trusting that God will work it out in his perfect timing.

Hope is still on the breathing tube and is sedated and sleeping most of the time.  We do get some brief periods with her eyes open but she's mostly very dopey.  It's hard to see her like this and we're hoping to get the surgery over with so she'll begin improving and be able to have her breathing tube removed.

Sadie is on her way to BC today, please pray for traveling mercies and for Josh and Amanda as they road trip such a great distance with a toddler.  We're hoping that the surgery date works out so Sadie doesn't return too close to the day of the surgery, Sadie returns with Auntie Lindsay next Friday, April 20th.  Please pray that the infection will be cleared so we can go ahead with surgery and that it will happen this Friday so we have a full week post op before Sadie returns to get us laughing again.

Tuesday, 10 April 2012

Infection present

It was a rough night, we were woken up at 4am with a phone call from the NICU to tell us that Hope was being intubated as she was not breathing well on her own.  We couldn't go back to sleep after a call like that, so Shawn and I drove into the hospital to see our little girl.  She was highly sedated and seemed pretty settled.  We drove home for a couple hours of sleep before returning this morning before rounds.

Hope is still very sedated and tolerating the breathing tube well, she sucks on it like a soother but randomly chokes on it a bit too.  We were told this morning that Hope's blood cultures did start to grow some bacteria, this shows that she has an infection of some kind.  They drew more blood this morning to see if it would grow bacteria again, as she has been on antibiotics for 24 hours and they're hoping they've already stopped the infection.  If they have, surgery will stay on schedule for Thursday, if they come back positive for bacteria again they'll have to bump her surgery.  Please pray against this as we're hoping she'll be able to go in for surgery on Thursday and not have to wait too much longer.

They are going to allow us to hold her for a little bit today but it's a more complicated process with the breathing tube in and we won't be able to hold her for long.  Please pray for strength for us today, we're pretty emotional and extremely exhausted.  We really need a good sleep after such a short sleep last night.

Monday, 9 April 2012

The honeymoon is over...

Today was not the greatest day, in fact, it was our worst day so far.  As one of our favourite nurses described it to me, some heart babies have a honeymoon period and seem to be so healthy, but the honeymoon usually ends.  Hope seemed to be doing well in the morning when Shawn arrived and he was told that they are looking to bump her surgery until Thursday now.  After a few hours, Hope started to show some changes in her usual behaviour.  Her heart rate was up in the low 200's and stayed there for quite a few hours.  She was running a very high fever and her oxygen saturation levels were dropping constantly and taking longer to go back up.

They ran blood work, urine cultures, her gases and continued to watch her.  They decided to start her on an antibiotic for the next 48 hours until her cultures come back.  This basically guarantees our surgery being moved to Thursday as they won't operate until infection is completely ruled out.  For the first 4 hours I sat next to Hope, I wasn't allowed to hold her or touch her too much as they were trying to get her body temperature down.  This was a small dose of the reality ahead and it was torture, I was brought to the brink of tears repeatedly and had to fight to hold back the flood.

When Shawn and I returned to the hospital after dinner, Hope had been put on oxygen and will likely remain on it until her surgery.  The need for oxygen shows that although Hope is doing very well for a baby with only half a heart, the heart is starting to struggle and needs surgery soon.  One of the bad things about the oxygen is that it makes Hope lazy in her breathing.  This is causing her oxygen saturations to still take dips, but they seem to recover more quickly.  I think the most difficult part, is knowing that this is only the beginning of a long road with Hope that is going to get increasingly more difficult.

To top off our emotional day, this was our last day with Sadie.  I wanted so badly to spend every moment with Hope, but knew that I wanted to spend time with Sadie before she was away from us as well.  Before Shawn and I tucked Sadie in tonight, we took some time to pray with her and I cried through the entire prayer.  Although it kills us to have her gone for 11 days, we know that it is not only the best thing for us, but also for her.  Sadie is going to be in her glory with her cousins and her aunt and uncle.  We know that she will be well loved and cared for.  We are sure going to miss the way she makes us laugh and the smiles she brings.  When I said amen tonight, Sadie looked at me and said, "Amen".

After spending some more time with Hope at the hospital this evening, Shawn and I prayed over her and left her in the capable hands of our favourite nurse.  She has been known to spend a lot of time cuddling our little girl, this is such a blessing to us and it truly makes us sleep a bit better.

Tomorrow morning my mom is going to be at the hospital for rounds in the morning.  Sadie is leaving after lunch and Shawn and I have decided to spend the morning with her before she goes.  I imagine we'll have a tough time saying good-bye and yet, will try to keep a strong composure for Sadie's sake.

Please pray for us as we let our precious Sadie out of our sight for the next 11 days.  Pray the time goes quickly and that we are able to connect with her on Skype, even with our crazy schedule.  Please pray that Hope's heart would be strong enough to carry her through the next couple of days, that her condition wouldn't become any worse and that there would be no sign of infection that could delay her surgery even further.  We truly covet your prayers for our fragile little baby and our family.

Saturday, 7 April 2012

A Night of Tears

This morning we went into the NICU just before 9am and were told that Hope had cried most of the night.  They told us that she does a lot better while we're there and seems to really notice when we're gone.  Thankfully we had the same amazing nurse, two days in a row, and she spent a lot of time holding her and showing her that she's loved even when we're not around.  Today we tried to take breaks throughout the day more and stay later at the hospital to be sure she wasn't left for quite as long at night.  She spent most of the day asleep in our arms, exhausted from her night of tears.

We have Sadie back at the Ronald McDonald house with us for the next few days.  It makes everything more difficult, but we know that while she's gone we'll miss her like crazy and need to work around the crazy schedule to spend as much time with her as we can.  It's really hard to split your time between the two girls, tomorrow morning I'll be at the hospital while Shawn does an Easter egg hunt with Sadie.  I hate to miss those things but need to be in the NICU for the doctors rounds to get the information for the day on Hope.

We were told today that the surgery has been planned for Wednesday, but there is a chance she would be bumped because she's very stable and not in critical condition currently.  This is great news, the wait is hard but we're happy to be parents of the boring, stable baby!  We feel a real time crunch now to get as many snuggles with our little girl as possible.  After surgery it will be quite some time before we're able to hold her again and want to get all the time we can beforehand.

I'm feeling extremely tired and my body is really feeling the lack of sleep.  My legs are swollen to the point of being disgusting and hurting as I walk.  I've had a headache since I delivered that I can't seem to get rid of and I find I sleep terribly every night as I struggle to fall back asleep after pumping.  We're looking into having a form signed that will allow my mom to receive medical information about Hope on our behalf.  This would allow us to sleep in one morning and not be rushing to the hospital for 9am rounds.  She would have to leave the NICU while the other families were briefed in rounds around us, but would be able to receive the important information on Hope and pass it along to us.  We're hoping this works as I don't know how much longer I can carry on this way and afternoon naps seem to be difficult for me.

For any men that don't want too much can skip this section...
My milk supply has now come in and is making it less tedious to pump, but it takes more work at night as I have to leave our room and go put the milk in the freezer after pumping and disinfect all the pump parts to get ready for the next pumping.  They don't want Hope to receive any food yet, but want to make sure we give her a chance to learn how to latch.  This has not been going well so far, they are having me pump off the milk and then try to latch her when we know she won't get too much food.  Today they had me try this with a nipple shield on to feel more like her soother.  It was slightly more effective but we couldn't get her to really suck, please pray this improves and she learns to feed.  If we can have her feeding well after surgery, it will decrease the time we're in the hospital by a great deal.

Some specific prayer points:
* Pray for a balance as we have Sadie over the next few days, we want to enjoy the time with her and cherish those moments with Hope before surgery.
* Pray for strength and health for us all, I have to remind myself that I'm feeling so disgusting because I just had a baby, 3 days ago!
* Pray that Hope won't have to be on the heart and lung bypass machine for long during surgery.  This is the most dangerous time in surgery.  It is also the most dangerous for Hope because of her very small aorta, it will cause trouble for the surgeon and could result in her being on the machine longer.
* Pray that Hope continues to be stable and remains the boring baby in the NICU.  We are truly blessed that she is tolerating the medications well and is not on a respirator, this allows us to hold her a lot more.

Thanks for caring and continuing to lift us up.  We totally see evidence of the prayer that surrounds us and our precious Hope.  We go into this Easter with a new perspective on the hope we have in Jesus as we look at our little girl each day.  Happy Easter everyone.

Friday, 6 April 2012

Our musical baby

This is going to be a quick one, I'm exhausted and really need my sleep.  Hope is doing well, she tired herself out yesterday as she sucked on her soother in hunger.  Today she seems okay with the idea that she won't be able to eat until after surgery and slept through most of the day.  We were able to hold her a lot today and so appreciated that, we even got to do some skin to skin time.  This has helped bring my milk in a bit more and I'm hoping by tomorrow, it'll be here!

Hope LOVES to be sung to, anytime she begins to cry, singing makes her fall asleep.  It's just so fun to sit and sing songs to her and watch her settle.  She also snorts every time she cries, she's full of fun noises!

The surgeon came by to see us this morning and has suggested that Hope's surgery will likely fall on Tuesday or Wednesday next week.  There is a high chance of her being bumped from surgery, because she is so stable.  As a result, we may not have an exact date until the last moment, we're fairly confident it won't take place over the weekend though.

Shawn and I are doing pretty well, we're both exhausted and lacking in sleep.  We're struggling with the time away from Sadie and are having her for a sleepover tomorrow night.  We dread her departure to BC next week, but know that it will be the best thing for all of us and that she'll be in capable hands.  I'm sure she won't want to come back home after a week with Auntie Lindsay!

Thank you for keeping us in your prayers and continuing to follow along.  Prayers for milk supply, our car repair to be more minor than we think, Hope to stay strong and stable, SLEEP!

Any recommendations from all you Edmontonians?

We just drove to the hospital this morning for rounds and there appears to be something VERY wrong with our car!  Just thought I'd any of you from Edmonton know of a reputable place we can take our car in to be fixed?  It would be great if it was close to the Ronald McDonald House or the Stollery  but we are happy to go anywhere that is good.  We figure most places will be closed today but if you have any suggestions/recommendations, that would be great!

Thursday, 5 April 2012

36 hours later...

My guest bloggers did a great job, but I have returned to my post.  It has been an eventful two days and my body is exhausted but my heart is full.  The power of prayer is an amazing thing, oddly enough none of us have cried or shed a single tear since Hope was born.  There is such a great sense of peace, relief and joy that has filled the entire process and we can only believe that peace is from the Lord.  Let me look back and relive it all for you in my own words.

I had braxton hicks for quite a while, on Thursday night they became more like real contractions but the pain was extremely minimal.  On the Friday before, the OB told me I could be in early labour but it could take a while if it wasn't truly labour.  Saturday, Sunday and Monday continued on with very mild contractions but no progress in labour.  I was uncomfortable in my hips and was having trouble sleeping, at this point I was praying that labour would come quickly and I would get some relief from the waiting and discomfort.

Tuesday morning I was up at 4:30am because of the pain in my hips.  I spent the morning alone in the lounge, I read, journaled and talked to God about the road ahead.  It was a wonderful time that helped get me into the right frame of mind.  At 1pm I went and had a prenatal massage to ease some of the pain in my hips and help me sleep that night.  Around 3:30pm I started to feel like my contractions were getting slightly more intense.  I could still walk and talk through them and figured I was just imagining things and it was nothing.  After we put Sadie to bed I was having the same feelings and started debating whether or not I should go to the hospital to get checked.  At 8pm my mom and I headed over to the hospital and left Shawn with sleeping Sadie.  I was positive they would tell me it was false labour and send me home, even as we waited at the hospital I asked my mom if we could go home as I'd changed my mind.  The OB came in and checked me, said I was still only 2cm and went to go talk to another OB.  After she left I had the feeling that I had peed my pants slightly.  Since this had already happened recently, I told my mom that I thought I had peed again or my water had slightly leaked.  A second later I started a pretty strong contraction, my first real contraction.  That contraction lasted for 7 minutes straight and was caught on the monitor they had me hooked up to.  A few minutes later I had another one that lasted for 9 minutes!  During that contraction we called Shawn and told him that something was happening and he needed to get to the hospital.  He called his aunt to come and take over Sadie's care and got over to the hospital within the hour.

I was quickly admitted to the hospital and put into the high risk delivery room.  The OB came and said that because I was clearly in labour, I was now already 3cm dilated, that they wanted to break my water to get my contractions to regulate and not last so long.  My water was broken just before Shawn arrived to join us in the delivery room.  It was now around 11pm, after things progressed slowly for an hour, they decided to start me on pitocin to be sure my labour was not too long and strenuous for Hope.  I laboured until 2:30 in the morning when my contractions started to piggy back.  After having 5 contractions in a row, the OB came in to meet with me again.  She suggested I take something for the pain to be sure I was strong enough to deliver Hope naturally and not end up in a C-section.  They wanted to keep me on the pitocin and worried my contractions would continue to piggyback.  They called the doctor and ordered my epidural, they promised it would not slow me down in getting out to see Hope after birth if it was kept low.

After the epidural was put in, I curled up in bed and quickly fell asleep.  Shawn and my mom spooned on a single bed in the corner and got some sleep as well.  They got closer than the average husband and mother in law usually do!  We all slept pretty well until around 6 am.  I felt so much better and was looking forward to some good news...unfortunately I was only at 4 cm now!  This was really depressing but we tried to stay positive and keep hoping for some better progress.  For 2-3 hours we sat and watched the monitor, Hope started to have a few dips in her heart rate and we began to worry that they would push me to have a C-section.  Around 9:30 I told the nurse I was feeling a bit of pressure and my epidural had stopped working and I was feeling my contractions again and needed to breath through them.  The nurse checked me and told us the great news, I was 7 cm and almost totally effaced.  It was only 20 minutes later that I started to feel like I wanted to push and asked the nurse to check me again.   She told me I was ready to have this baby and hurried to get all the right people together for the delivery.  The doctors arrived and after just minutes and two pushes, Hope was here!!

Hope had her cord around her neck briefly and was pretty lethargic.  As a result they told Shawn to cut her cord quickly and rushed her to the next room to the NICU resuscitation team.  Shawn and my mom followed after her while I finished up with the doctors.  The nurse came and quickly told me that Hope was doing okay and they would let me see her when they were finished with me.  My mom came back and forth to keep me company with reports of Hope and pictures, it was a long hour.  They finally loaded me into a wheel chair and brought me over to see our little miracle and touch her for the first time.  She was as perfect as I imagined, she had Sadie's toes and her nose was squished against her face from birth.

When they handed her to me for my first snuggle, the transport team was already on the way to pick her up.  We didn't get to have long with her, but were grateful for the time we had with her.  I was taken down to my hospital room with my mom.  They made me stay for 1 hour and then gave me a pass to go and see Hope.  Even though you are tired, sore and hardly walking, you just want to be with your baby.  I was sitting next to Hope in the NICU less than 4 hours after she was born.  She was so little and cute, I just wanted to touch her and hold her again.

I had to leave the Children's hospital at dinner time and get back to the other hospital.  Shawn and I picked up some dinner and had a date in my hospital room.  It was weird to sit there all alone together after having a new baby and a toddler that was somewhere else.  We were both doing really well, feeling positive and in shock that our little girl was out in the real world.  Shawn left after dinner and headed back to the Ronald McDonald House for another sleep over with his Mother in law!  We are truly blessed that they get along so well and enjoy spending time together.

Through the night a spring snow storm hit.  In the morning, we had a plan that didn't work out, but were able to come up with a new plan and get things organized.  Shawn came to pick me up and check me out of the hospital by 8:45 and we left to head over to the children's hospital for the day.  It was so good to lay eyes on Hope again, we were only there for minutes before I asked the nurse to move her into my arms.  The staff have been great about letting us hold her, even though it's a lot of work to move all her wires and get her situated safely.  Sadie came to the hospital with Oma and Opa in the afternoon and met her little sister for the time.  She LOVED her and kept pointing and saying, "hi baby".  We spent the entire day at the hospital with Hope but took turns leaving and getting breaks.  It had only been 24 hours since I delivered, as a result, I needed to leave by 4:15pm because my legs were swollen to a crazy size, I was pretty sore and needed to put my feet up.
Sadie meets her baby sister for the first time!

It's funny to think that the Ronald McDonald House feels like home, but it is so comforting to be back here.  Shawn's parents came to the house to have dinner with us and bring Sadie over for a visit, it was so good to see her again, we really miss her.  She seems to be handling the changes and moving around very well.  Please continue to pray for her in this crazy stage and pray for the people that will be caring for her as she's very busy.

As for Hope, the doctors have been very pleased with her progress so far.  All her levels are good and she is breathing well on her own and not needing a ventilator.  When my mom arrived at the hospital this morning, the nurse remarked at how alert Hope is and said that most HLHS babies don't even open their eyes sometimes until they are 2-3 days old.   Her echo did not show any changes from the reports they gave us before she was born.  This was good news to know that there weren't any additional issues that the doctors were going to have to deal with.  She's a very 'text book' case for surgery, however, her ascending aorta is very small, under 3mm, and this will make her surgery more difficult and challenging for her surgeon.  Please continue to pray for the doctors and surgeons and for success in surgery in spite of this challenge.  Her surgery date is still undecided, we're getting the idea that we won't be given an exact date until immediately before it happens.  The surgeon's schedule constantly changes and it's too difficult to decide right now.  We'll keep you posted as we get information, but it doesn't look like it will happen until some day next week.

Please pray for a quick healing with my body as it makes it difficult to sit in the hard NICU chairs all day and take the long walks through the hospital corridors.  Please begin praying for Hope's upcoming surgery, the surgeon that will perform it and all the other people that will be involved.  Please also pray for continued peace and strength for each of us.  Also pray for my milk supply as they will not allow Hope to eat until after her surgery.  As a result I have begun pumping but have yet to receive my milk supply, it will be easier once my milk arrives and I'm hoping that comes quickly.  Poor Hope, she was very hungry today and it broke my heart not to be able to feed her.  The nurses assured me that she won't feel hungry for much longer as her body will become used to the "nutrition" they are giving her through her IV.  Thank you for praying us through delivery, it was a huge success and much more enjoyable than Sadie's delivery.  We will keep you posted as to when her surgery will be.  Our hearts are full of gratitude for all your prayers - thank you!

Wednesday, 4 April 2012

Happy Birthday Hope!!

Well, it's Amy's mom here - Charlotte.....Amy has asked me to update you all with the exciting news that Hope Taylor Koslowski was born at 10:08 a.m. this morning!   She weighs 6 lbs., 8 oz. and is 19 inches long.

It was quite the day!  We are just praising God and thanking Him for the safe delivery of our newest grandchild, little Hope.  She is absolutely beautiful and we are already smitten!

As soon as she was born, she was whisked next door to the resuscitation room to be stabilized and have her lines/ I.V's placed and monitors attached.  Her oxygen saturations were good and although she was a little lethargic at first, she seemed quite content to be experiencing the sights and sounds of her new world!  Shawn went to be with his new little girl and I went back and forth between Amy and Hope while the OB finished up with Amy and the NICU team finished up with Hope.  After about an hour or so, Amy was able to be wheeled into the resuscitation room and was allowed to hold her baby girl for the very first time, while the transport team from the Stollery Children's Hospital awaited nearby.  This was a true gift from God, as it was something that she had longed to do and she was so grateful for the chance to love on her new little girl!  Daddy got a turn too!  Shortly after, Hope was transported to the Stollery, with Dad following behind.

After checking into the maternity ward, Amy was given a "day pass" so that she could head over to the Stollery and be with Hope, but return in the evening to sleep on the ward.  And so, about 3 hours after giving birth, Amy and I headed over to join Shawn and Hope at the Stollery.  The afternoon was spent watching the NICU staff do several tests on Hope - bloodwork, an ultrasound of her abdomen and head and a 2 1/2 hour echo - her first without Amy's stomach in between!  Hope tolerated a lot of poking and prodding and is already showing signs of being a real trooper!  It was almost surreal to look at her and realize that she is finally here!  She looks so tiny and so petite and it's hard to imagine that there is anything wrong with her!  She just looks so perfect!  The cardiologists spoke to us at the end of the day and said that they would be letting us know tomorrow what the plan for surgery will be.  We were very encouraged to hear that they did not find any other issues in her heart that could possibly "surprise" them in surgery or possibly complicate things further, so this was good news!

Tomorrow morning, Amy will be discharged from the hospital she delivered at and we'll head over to the Stollery for morning rounds.  I'm sure Amy will post an update once we get news of when Hope's surgery will be.

We have been totally overwhelmed by all the supportive words and encouragement that so many of you have shown to us.  We can never thank you enough for praying for this precious little girl that has won our hearts (and she is not even a day old!)  Your interceding on our behalf is such a tangible blessing that we are so grateful for.  Thank you, thank you, thank you, for pouring into our lives and for pleading for this little girl's life at the throne of our great God!  To Him be all the Glory!

Hope is taking her sweet time...

...still no baby, as of 9:15 AM in Edmonton. Amy has had an epidural and was able to get some sleep last night, which is good. But she is really nauseous, and obviously eager to bring this baby into the world. Shawn and my mom slept a little bit much as you can, in a hospital room, snuggled on a single mattress with your mother-in-law.  The nurses and doctors are hesitant to up the pitocin dosage because of its effect on Hope, so they're going slow. Please don't stop praying! Pray for everyone to have energy and strength after a long night. Pray for Sadie to have a fun day, and to not feel unease that she didn't wake up to her Mom, Dad, and Nana. Oh, and Happy Birthday Hope...April 4th will be a better day for the rest of time, because it is YOUR birthday!

Labour of Love

I'm just a guest blogger...this is Lindsay, Amy's big sister. Amy wanted to keep everyone updated on Hope's progress, but she is undergoing some serious contractions right now, so I get that honour. Today at 3:30, Amy's contractions started to get more intense and at 8 pm, her and my mom headed to the hospital. After watching her endure a 7 minute contraction, the OB decided to break her water. Amy gets to deliver in a high risk delivery room while a NICU resuscitation team waits in the room next door to stabilize Hope before she is transferred to the other hospital.
For now, Amy has been put on pitocin to try and speed up her labour. They don't want it to drag out for hours because of the stress it may put on Hope. Please pray that God gives Amy an extreme tolerance for the pain and that the labour moves very quickly and naturally. A c-section would be really hard on Amy because the longer she takes to recover, the longer she has to remain at a different hospital from her precious baby. Please also pray that Amy will have a chance to hold and snuggle baby Hope before she is whisked away by the resuscitation team. Hopefully, by the time most people wake up and read Hope will be here!

Sunday, 1 April 2012

God's Perfect Design

I remember hearing a friend tell someone that God makes pregnancy 40 weeks to make us uncomfortable enough to be willing to go through labour!  Today,  I have to fully agree with that statement.  On Monday when we went into the hospital, after I peed my pants, I was not ready to give birth and felt a lot of fear.  Today, I am beyond uncomfortable and frustrated, I would LOVE to go through labour!  I have been having weak contractions, tightenings, cramping and other fun things for days, with no rewards.

Although I still have reservations about Hope's arrival, I am ready to bring her into this world and start the journey with our little girl.  As a result, my impatience is great and this has made me pretty grumpy at times.  Every step I take is uncomfortable, sleeping is tough, bending over is nearly impossible and the waiting can be boring at times.  I still desire for Hope to arrive in God's perfect timing, I just pray it's in the next few hours!

Tomorrow afternoon we're going to have a fetal stress test done.  I'm hoping to not make this appointment but I'm starting to think I'll be there!  Please pray for us all as we continue this waiting game, I'm looking forward to posting pictures of our little girl when she decides to appear!