Monday, 18 February 2013

Memories and Toddler Moments

On Saturday we went over to the hospital as a family.  Sadie did well for hours but eventually needed a break from the hospital.  Sadie and I made a run to Superstore and Dollarama to get her out for a bit.  We were not able to find something we'd been looking for and decided to head over to London Drugs.  I never thought anything of it until I walked into the mall holding Sadie's hand.  The last time I had been in that mall was on November 16, 2011.  I had walked in with Sadie and Shawn to have an ultrasound and find out if our little baby was a girl or a boy.  We walked out heart broken and crushed, our baby girl had a heart that was broken.  The emotions flooded back as I walked through the mall and I was in awe of how much more we'd been through than I ever imagined possible.  I cannot help but give glory to God.  This is not possible without the Lord as no one is strong enough to take so much.

We headed back to the hospital after dropping off our groceries and spent the rest of the day at the hospital as a family.  It's amazing to be together as a family, I just wish it could be in our own home.  I hold onto the hope that it will happen sometime soon.  

This morning the plan was the same, to head to the hospital as a family.  I have no idea what happened to Sadie through the night, but she woke up a little naughty.  She kept insisting that she had to pee and wanted to sit on the toilet forever.  We needed to leave and eventually had to pin her down and dress her.  She proceeded to pee her pants as soon as we had her coat and shoes on.  It was not a relaxing or enjoyable start to 'Family Day'.

Once we arrived at the hospital Sadie was more herself and the rest of the day went well.  The doctors came to speak to us about Hope.  It sounds like the meeting with all the important doctors should be happening on Wednesday or Thursday.  They drew blood this afternoon, that has to be done peripherally and cannot be taken from her line.  We asked for the nurses from ICU to come up and draw it from her head.  This is often a better place to draw from Hope and can be done with one poke.  They agreed and the blood was drawn with one poke.

It sounds like Hope will finish her round of pure TPN later this week.  Once that is finished, they plan to start giving Hope breast milk from the milk bank here in Calgary.  It will be spun and all the fat will be removed from it initially as her body is still not able to have any fat.  This is because of the Chylothorax in her lungs.  Hopefully this is successful and we have Hope eating right away and are able to get her home!

In the late afternoon we got some results from the blood work.  Hope's platelets have been very low for a long time.  Today they came back perfect and her electrolytes are perfect as well!  It appears her body is much happier at the moment and she is doing well.  She has lost some weight since returning to Calgary and is at her weight from July.  We worry that she'll continue to lose once on breast milk and hope that she'll be able to get back on higher fat feeds quickly.  She's been 11 pounds for so long, I feel like we'll need to have a party when she hits 12 pounds!

Another week begins tomorrow, I always hate when Shawn has to go back to work and I have to be alone at the hospital.  I just want my girls at home so we can greet Shawn when he gets in from work each day.  Please continue to pray that this happens soon!


  1. Prayers being lifted up from SW Ontario! Our HLHSer (3 1/2 yrs old) asks often about Hope. May God continue to be given the glory in all that you are journeying through.

  2. Praying for all of these things, Amy.

  3. Continuing to lift your family in prayer. Oh Lord bring healing and relief to this family for Your glory.

  4. Milk with no fat causes Vitamin A deficiency. Are they prepared to treat that? How will she assimilate fat soluble vitamins without fat?