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.

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, Charlotte.......an 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.....

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.

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!

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!

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.