This journey can be isolating at times, but it has also brought many new relationships into my life. As I've mentioned before, we became really close with a couple of families at the Ronald McDonald House and entered the world of heart babies together. Sadly, we had to say goodbye to little Lincoln and we continue to think about him daily. As you meet families and become close, you love their children and ache for them as though you've known them for years.
Little Holly is back up in Edmonton and not doing as well as we all hoped she would. Holly has HLHS - the same heart condition as Hope. At this point, it looks like Holly's heart is not functioning very well and they are discussing the options for their next step. They have talked about the possibility of her needing a transplant now. Please join us in praying for Holly and her incredible family. I have already started praying that if Holly needs a transplant, God would provide a donor quickly. It feels like the oddest thing to pray, and yet I know I will likely be praying the same prayer over our little Hope one day. This is a tough road and it comes with many tears. I've had a headache all day, likely from crying along with our friends and wishing I had the ability to make everything better.
As for Hope, she seems happier when she's in the hospital. Now that we're home, she has stopped taking anything from a bottle completely! The last few days have involved a great deal of crying on her part and an extreme level of high maintenance. She wants to be held and bounced constantly. Today the batteries on the swing died and it was like the world was ending in our home. Without our swing, vibrating chair and vibrating basinet, I think our arms would go numb from the constant bouncing and jiggling as we carry Hope around trying to settle her.
The stridor is still very loud at times. I spoke with the ENT specialist yesterday and he said that it will likely stay that way for quite awhile. Until Hope's floppy voice box is repaired, or repairs itself, she will continue to have the very raspy breathing. It stresses me out and makes me sleep less deeply and worry more for our little girl. She sounds like she can't breath often and I panic. Thankfully, the ENT doctors are wonderful and never seem annoyed with my constant phone calls for reassurance.
Today we finally got around to getting Hope's 2 month vaccinations done. She hated every second of it and I nearly had a breakdown. I always try very hard to look like I'm doing well when I'm in a public health office. I worry they'll lock me up and make me go through some parenting courses on being cool, calm and collected. My friends work hard to make sure I'm not alone with both girls during the day, but some days it just doesn't work out though. This morning I was on my own and it was not pretty. Sadie trashed the health nurses' office and Hope lost at least a few hundred calories with her screams. They were trying to figure out the protocol for giving Hope the injections with her high level of blood thinners. Eventually I got upset and told them what the protocol was going to be and that it better hurry up! I think the nurse could tell that I was about to lose it and moved things along a little faster. When we left I felt like I needed to drive to a retreat centre to recover from the 1 hour appointment.
I'm learning to stay away from things that make this more difficult. For example, I hate pumping. It feels like the biggest burden and it stresses me out as my milk levels continue to decrease. I used to feel terrible if Hope ate more than I had pumped in a day. It completely drains me and makes everything more difficult. Now I try to look at it all more positively. Each time I pump, I have one more feed that Hope can have. I still have a lot of milk in the freezer and we won't run out anytime soon. My goal is still to make it to the second surgery before switching her over to formula. She is doing really well with her digestion and I have to believe that if I dry up and we run out of our back stock, God will give her the enzymes she needs to keep down her feeds.
Hope is not gaining weight currently. It's likely from all the crying she's been doing lately! She's still over 10 pounds, but hovers between 10.2 and 10.4. She doesn't seem to be able to make that jump to 10.5 right now. Please pray that she will continue to gain weight, learn to eat orally and breath without too much effort. Please also continue to lift up Lincoln's family as they walk through the terrible reality of losing a child, and Holly's family while they are back in the Edmonton PICU. Life is truly a journey. Some days are more bumpy than I enjoy. I have learned to try and enjoy the beautiful things as they pass by though. Each time I see Hope smile, I'm inspired to push through the next bump and keep on going. With God's strength we continue on.....