Last day of August

Sara's night was more stable after she came back from the OR. They found bleeding where her berlin heart is attached, so they stitched her up, and are monitoring her closely. Her oxygen saturations during the surgery were at an all time low of 7%, so there are concerns about her brain function. But we are seeing her respond to us, just like before - squeezing our hands when we ask her too, and trying to look up at us. We're praying that she will recover from this surgery just like before. She's stable now and resting, maybe later they will extuabate her breathing tube! Hopeful for tomorrow!

Thursday late night surgery...

Sara's in the OR, they found a clot outside her heart that they're removing now. She was having problems with low oxygen saturation, so they did a chest X-ray and an echo which both showed the clot. She's had a similar surgery on August 18th to remove large clots, and also flush her chest cavity. Sara was doing really well, but there will be ups & downs, so thank you for holding her up in prayer. God is with us!

Thank you so much for the surprise visits from friends & family, the care packages, gifts, love & prayers! We are well taken care of, and so blessed!

We'll post tomorrow about the outcome of her surgery.

Cuddle bug!

Highlight of my day - holding Sara! It was so good to be with her today, to cuddle with her on her bed and then holding her on my lap. She's so sweet, smiling and saying Mommy, and also Max when we talked about our dog. She still has pneumonia, and now a partially collapsed left lung, which is concerning. But she's still progressing with less lines and tubes then yesterday! Thank you so much for praying, it's the best support we could have! We know that God is working through Sara's journey to touch others, we pray that they will also turn to Jesus, his love for them is so great! 

Here's a video that we made for our friend Brooke, that was too cute not to share! The song they're singing is called "In the Highways, in the Hedges".

Extubation!

Today was a wonderful day! After being intubated for 12 days, Sara was extubated (she came off the ventilator), and is doing so well! Although she's not talking yet, she will be soon and we're thrilled to be able communicate with her again! She also came off some medication, and is on a little oxygen. Please pray that she gets rid of the pneumonia, and keeps coughing well. Her skin is so sensitive that tape often peels it off, so pray that it heals. She's doing great on the Berlin Heart. Today was a huge step to recovery, and we're so thankful, we're praising the Lord!

She loves her dollies, and to hold hands while we visit, she also loves watching movies with Hailey. She was looking at us a lot (with one eye because her eyes turn out), and it's so good to see her more awake! We love you Sara!

We are so grateful to all our visitors, it's so wonderful to visit with 

you and it means so much to us that you make the time to see us & Sara :)

Berlin Heart

 Today the Doctors were a little hesitant to go ahead with the Berlin Heart surgery because she has pneumonia. It's just not very severe, so after discussions in the OR they decided to go ahead! So far she is doing really well, and now we just have to wait for a heart. Thanks for praying!

Snuggles with her babies, and Hailey holding her hand before her surgery.

Here she is after her surgery

This is the little pump, the Berlin Heart, with a line to a large cart 

where they control the pressures and settings

Saturday

Tomorrow morning Sara has surgery at 9am to put in a Berlin Heart, it is a pump that will give her more mobility while she waits for a heart transplant. Please pray for the surgeons, and for Sara, hopefully she won't bleed like she did with the Fontan. Also pray that she'll have a quick recovery, the surgeries have been hitting her hard. Please pray that she stays healthy through this all, without infection or complications. We're so glad for this next step, hopeful that it won't be too long before her heart transplant and waiting for God to work out those details. He is our peace!

We've met a few families that also have little ones here in the PICU and the NICU, so you can add them to your prayer list : Caleb, Jensen and Drayton. It's so great to connect with other families here, build relationships and pray for each other! God has Blessed us so much!

Picture from before Sara's surgery

Here are my girls, having fun in a tunnel at the park.

Friday

Today has been a stable day for Sara. The doctors have tried to wean her off the Levitronix (heart pump) a number of times over the last week without any luck. So the next step will probably be surgery to implant the Berlin Heart, possibly on Sunday. This is a good option for her while waiting for a heart transplant. If all goes well after recovering, she'd be able to be on the floor on 4C, where she'd have more room, and be off the ventilator. We love that she's looking for us when we come visit, but it would also be nice for her to be well enough to talk & visit with us too! We know that your prayers are carrying us through, and will continue to, thanks again! God Bless you!

Week One

Well we've been here a week, and there have been a few ups & downs. Today was a better day then yesterday. The worry was that she wasn't moving, or responding, but she was also on a lot of sedation meds. They took her off the meds, after 4 hours we started seeing reponses from her. She was waking up and turning her head and opening her eyes to look at us! She even squeezed my hand when I asked her too! We just love her so much, and miss having her running around. Today I got to wash her hair, it was full of crusty goop from the EEG Brain Scan. So now she's all cleaned up, and they'll also change her dressings on her chest. They are worried that she may have an infection starting, so she's on anti-biotics for that. We're praying that she doesn't have an infection, that the swelling all over her little body goes down, for her kidney & liver to improve. We're really glad that the bleeding has gone down. Lowering the amount the Levitronix (pump) hasn't been going well. So we're not sure what's next, but we're still on the transplant list, and we'll hear from the doctors if they want to make any changes like going on a pump that's more long-term such as a berlin heart.

Wednesday

Things were looking hopeful today to start weaning her off the pump. But when they got down to 25% on the pump, her oxygen saturations went way down (around 59%). Her oxygen was sitting around 93% all day, so when they turned the pump up to 100% to bring her oxygen up, her oxygen stayed quite low at 70%. They haven't figured out why exactly, but it may be because of the fluid she has been retaining around her lungs and chest cavity. Now the the hope is that the peritonal dialysis will help remove fluid. She's also been more awake, and crying, so managing the pain with morphine has been increased. Please pray for her and wisdom for the doctors.
We've been so blessed by meals, and visits from family and friends, and meeting new families from the PICU. We are encouraged so much by your prayers for Sara, thank you!

Tuesday

The only change today after the Echo on Sara's Heart was to lower the amount the pump is pumping for her  from 80% yesterday, to 50% today. Her kidneys are not doing well, but her liver has shown some improvement. They're also trying to find a balance for her sedation, keeping her pain under control, but also not completely sedating her. They like to see some movement, but not too much! Please keep praying that God will guide the Doctor's decisions, and that it will be the best for Sara. We're so thankful for the PICU, and the staff who care for her, Sara is in good Hands! God is so Good!

Monday

Today Sara had an Echo, and then they did another Echo to see how her heart managed while they slowed down the pump and let her heart take some of the load. It went well, no change on her pressures or numbers, so that is all good, she'll stay with those settings until tomorrow. Not much new happening, other then a little less sedation, and a little movement from Sara! We'll see what they do tomorrow, maybe turn the pump down again? I'm not sure. Little improvements are good news, so we're praising the Lord for that, He is so good! I can't wait to give hugs & cuddles again, that's all I want to do when I see her!

On the transplant list, and now she's improving...

After 3 surgeries in 4 days, Sara is improving. We're on the transplant list and waiting to see how she does with her own heart. The levetronix heart pump is running at 80% now, and they're watching to see how well her heart handles that. We're praying that her kidney & liver function improves, they've been hit hard with these surgeries because of the medications and the by-pass machine. We're thankful that her bleeding has continued to improve and the surgery today to remove the clot was sucessful. Thanks for praying with us!

Waiting, and more waiting...

So after a long day of waiting, we are still waiting to see how Sara will do. She had another surgery this morning to clean out the blood clots and fluid from around the heart. A very simple procedure that went well. They are still trying to manage the bleeding but she seems to be doing better that way. We talked with the transplant team today and all the tests are done that they need to do before listing her. Our surgeon is calling them this evening to get her on the list, so we will find out if she's on the list tomorrow morning. This does not mean a transplant will for sure happen, it just means if a heart becomes available Sara has a shot at getting it. She is going back into surgery tomorrow morning to remove a blood clot from her right ventricle. That should make more room for the  left side to do it's job. There is still a chance for the fontan to work, but as we wait and see, at least she will be listed.
Here are a couple pictures before Sara went into surgery and after. Sorry if they are too graphic, but our intent is to document and update everyone on our journey. Thanks for all your prayers, we're so thankful for each one!

Maybe the transplant list?

Sara had a rough night. They struggled with controlling the bleeding, thankfully it has decreased. her kidneys aren't doing well, but she isn't in need of dialysis. She is on many medications and looking quite purple, but she looks better today then when we saw her last night. There is a blood clot on her right side (the closed off side), but it seems not to be bothering her left side, but the right side is still very large and compresses the left side so it's function isn't so good. Because she isn't coping well with the surgery, so she is on an external pump. Now they are talking about getting her on the transplant list, so they are testing her right now and we'll know more tomorrow. If she goes on the list, she will be the top priority. So that means a nation wide search for a heart. We know it comes with many issues of it's own, but because of how sick she is right now most of the doctors think it is the best option for Sara. Things still could change, so we'll update as we get chances to do so.
Thanks for your prayers and encouragement! Love the Congo's

Surgery at 11am tomorrow!

Today we're getting ready for Sara's surgery- baths, laundry, dishes, picking out what toys will come with us, and taking pictures of my girls! It will be a while before Sara's back on her feet again, and they're just too cute! Her surgery is scheduled for tomorrow at 11am, thanks for praying for us.

New surgery Date... again!

Sara won't be having her surgery tomorrow, it has been bumped because of emergency surgeries coming in. So it's scheduled for August 17th, but if there's a cancellation they'll book us in sooner. All the tests are done- the Echo, ECG & bloodwork is all set and ready. It was a long day at the Stollery. So we're glad to be home now, time for a nap! Hopefully we can keep Sara well! This is the longest she's been healthy since wintertime. Thanks for keeping us in your prayers :)