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!
Wow Amy, I don't know what to say. I think you are handling everything incredibly well for the level of stress and sadness you are dealing with. I read your blog updates every day and my thoughts and prayers go out to you. I can't believe you have the energy to post at all so I hope that in some way writing can be a therapeutic outlet for you. I have no idea how to encourage you since what is going on is bafflingly heartbreaking. But if just simply knowing that me and countless others are following alongside you on this journey is strengthening... than take strength in that thought.
ReplyDeleteHang in there, mama! I know it's really tough right now but just remember that Hope is exactly where she needs to be. She's getting the best care and will continue to get better there in the hospital so that she'll be strong enough for you to take her home where she will thrive! This heart journey is definitely a hard road, but it IS doable! Hang in there and lean on your fellow heart mamas for support! We've all been there! You'll want Hope to get better and stronger so she'll do well between now and her Glenn. She's already proven to be a tough little cookie and I'm sure God will continue to bring her healing. He will also give you the strength you need for each day.
ReplyDeleteMy HLHS'er Chase was one of the VERY lucky ones who didn't deal with Chylothorax (he had other issues with vocal cord paresis, thickened feeds, etc.), but I've heard of some hospitals that are able to take breast milk and place it into a centrifuge to spin out the fat. That way your precious little girl would get all the benefits of your breastmilk without the fat to exacerbate the Chylothorax issue. Might be something to look into.
((Heart hugs!))
Kathy
www.mom2lo.com
As a NICU nurse myself, I encourage you to ask the nurses to let you get involved if they're not already offering. There is no reason that you shouldn't be able to change Hope's diapers, take her temperature, help with her baths and when they weigh her. We have parents help with even our tiniest and most fragile patients (23-24 weeks gestation, weighing just around a pound). IV lines, ventilator tubes (although I know she's not ventilated right now), and even a chest tube shouldn't stop you from being able to be hands-on with Hope. Sometimes as nurses we just need to be reminded of that!
ReplyDeleteSo sorry to hear of all your troubles with Hope and hopefully she will be on the mend soon. Enveloped in all those prayers, I am convinced that she will improve soon and you will be able to cuddle and feed her soon.
ReplyDeletepraying so hard for you guys and lil Hope!!! a friend was going threw stuff with there baby and this is what she said helped her get threw it and i thought of u guys when i read the post here u go!! Whoever dwells in the shelter of the Most High
ReplyDeletewill rest in the shadow of the Almighty.[a]
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
9 If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he[b] loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation. ”
Psalm 91