Saturday update

Sara is progressing slowly, she's starting to talk a little bit. We're glad to be in the care of the PICU, but we're looking forward to getting up to the floor on 4C. It will be easier for Sara, and for us to start more of a normal routine. I think this will help with the state Sara's in, kind of a down/depressed mode, with no reactions and little emotion. Thanks for praying, we're still in need of it!

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!