Tuesday, November 29, 2016

November 29, 2016 Post-Op Day 1

So A LOT has happened in the last 48 hours......

 We checked into CS MOTT Children's Hospital around 9:30pm on Sunday night. I think we got about 2 hours of sleep on Sunday night. Emmie was determined to eat right up until midnight, so at 11:00pm we are eating mac-n-cheese, yogurt, pretzels, apples, chocolate milk. The girl was literally counting down the minutes! At midnight they came in and did blood work. Around 2:30am they came in to put her IV in. And we had to be up at 5:30am.

Monday morning at 7:00am they took us down to the surgery pre-op. We met with all the surgeons and anesthesia team. One really cool thing that happened, was when we met Dr. Parks, the urologist responsible for her partial nephrectomy. He said to us "I have a habit of praying for my patients before surgery, would it be ok if I prayed for your daughter?" We have never had a surgeon ask us that. Of course we said yes, and we prayed with Dr. Parks over our daughter. God is good all the time and he places people in our paths. I firmly believe that God brought us here to this team of surgeons.

Surgery was LONG!!! She was taken back around 7:45am. That was hard for me. The separation is always hard. I start to have all these second thoughts, like what did I just do to my kid! I know that's Satan creeping in. We received updates throughout the day via text and phone calls. Everything seemed to be going according to plan.

Around 4:45 we received notice that one of the vascular surgeons was ready to update us and we needed to return to surgery. We consulted with Dr. Eliason. Let me say, it was one of the most uplifting post-op consults we have ever had! He said everything up to this point went better than planned! The vascular part is done. Her aortic patch went well. Her right renal reconstruction went well too! They were able to construct a normal sized artery on the right side, which is amazing! They made her aorta the size of a teenager so she will grow into it, so no need to go back in and patch her aorta again. Her pressures were good the entire time, no complications what so ever! He even thinks it's realistic for her to be medication free within 6 weeks! Praise God!!!

Around 6pm, Dr Parks showed up in the waiting area to talk to us. His part, which was the last phase of the 3 phase surgery was complete, which meant surgery was done! They were closing her up. He said Emmie did great! And he was really glad they decided to take that upper pole out. He said it was a hard cauliflower like mass, the size of a baseball!! It was providing her with no good kidney function, but quite possibly contributing to most of her blood pressure problems. They have sent it off to pathology to see exactly what it was. We told our crowd of family that Dr. Parks was the one who prayed with us before surgery. We had a nice conversation with him about his mission work in other countries, and how a few years ago he felt convicted about praying for his patients in the states like he does in other countries. Instead of praying for them in secret, he decided to start asking families if he could pray with them. The amazing thing is, he's never had someone tell him no. God is doing amazing things with Dr. Parks and his gifts in medicine.

Our final consult of the day was with Dr. Coleman. That lady looked exhausted. She was by Emmie's side doing very tedious work for hours and hours. She was there in the beginning, and she was the one who closed her up. A long day for her. She is saving lives and I am so grateful she was able to help my baby. I can not say enough good things about her. She's so polite, soft spoken, and nothing but good things to say. She was so happy about the outcome of Emmie's surgery. Everything went better than they planned. No complications. I will never be able to thank her enough for her work on Emmie. Because of her, Em could likely be medication free! She will likely live a very normal life with little to no complications from her congenital defects.

We were able to see Emmie for the first time around 7:30pm. She was resting peacefully, still intubated, which we were warned about. She looked good, a little swollen, but over all good! Unfortunately, (or maybe not, it's hard to tell) Her feisty personality started showing through! She fought the tubes, tried to extubate herself, bit down on her airway. It was a nightmare. The nurses assured us that this was actually good. Feisty is good, and the fact that she came out of sedation faster than anticipated meant her kidneys were working well.

It was a rough night! She woke up several times, each time a little less traumatic than the last. Each time a little more calm than before, but by 2:30am the nurse said it wasn't good to keep sedating her and making her stay on the vent when she was fighting this hard to come off, so she set the process to extubate. At 4am they finally took her off the vent. She was much more content with out that. She was able to talk to us, which was good. She was still very loopy, but rested much more peacefully after that.

Now we start the next phase of hard. Because, really every phase of this has been hard! Her digestive system is basically asleep, which is normal. We were told all of this ahead of time. She can not eat or drink until Thursday. We are giving her a little sponge of water to wet her mouth, but that is it. It's really hard for her, and hard on us. The kid was asking for chocolate milk while still on the vent! She was mouthing it to me! ugh! other than asking for me or Tom, chocolate milk was what she wanted! It's like her coffee, and we can't give it to her. So hard. Her pain is being managed well. She is on a morphine drip, and unless they move her, she's ok. It's really hard to see her in pain though, and they have to move her around to keep from getting bed sores. Tough stuff.

Please keep praying for us. Pray that God will sustain us during these difficult hours. Pray for Emmie to be peaceful and comforted, and rest easy during the next few days. Pray that she continue to surpass expectations and her digestive system will wake up sooner rather than later!

Casting the whole of your care (all your anxieties, all your worries, all your concerns, once and for all) on him, for he cares for you affectionately and cares about you watchfully. (Ps 55:22) 1 Peter 5:7 AMPC

Friday, November 25, 2016

Thankful Hearts

We have a lot to be thankful for this year. Our family, friends, and church family have gathered around us in a show of support that is truly humbling. God had blessed us with such an amazing support system. I do not feel worthy.

Our family has rallied around us to be at the hospital with us, Tom's mom is coming all the way from Florida! My aunt is also coming from Florida to stay at our house to care for Blake and Elise. My sister is helping with kids, and helping my aunt learn the routines! My parents plan to drive back and forth to Michigan several times to help us where needed. My brother and sister-in-law have also offered to help where needed and will be at the hospital. Tom's brother and sister offered to drop plans and be here if needed.

Our church family has been amazing. They have offered so much to us. Our pastor and one other church member will be going to Michigan with us, and bringing the boys back home on Tuesday. Two small groups at church took up love offerings for us, and another small group took the time to write us encouraging words and Bible verses on note cards to help keep us positive throughout the next few weeks. Our small group is providing meals for us when we return from the hospital. We also have a group of people surrounding us on Sunday to pray over our family before we head to Michigan.

My gym family, and yes they are family too! My training studio is so much more than a job to me. My clients become my friends. I become involved in their lives, and they in mine. They care for me and my family, and I don't know where I'd be without that support. When I first set out to be a personal trainer, it was something I could do while staying home with the girls. I quickly realized that God had more planned for me than just training some people. I never saw myself opening my own studio, I never saw it moving out of my house, and I never imagined it would grow into not only a training studio, but a ministry. Lots of times, I find myself being more than their trainer, I become a counselor, a friend, a shoulder to cry on, someone they can count on to help them out. Well, they have returned the favor in a big way. They took weeks to collaborate gifts for all of my kids, gift cards and gifts for me and Tom as well. It was so sweet, and so unexpected! They also want to do meals when we return from the hospital. And one special lady already made up her "made from scratch" meatballs and marinara and froze several of them for my aunt, or us to use in the next few weeks.

There are countless others who have offered up support. Past training clients who are still friends, high school class mates, family friends who have all dropped off gifts, or sent them via amazon!! But its more than the gifts, while they are very nice and will truly help alleviate the financial burden, and will help Emmie recover by giving her things to entertain her while she's down, it's the outpouring of love on my family. All the kind, encouraging words and the prayers that I know are going up on our behalf because I feel a peace that surpasses all understanding. A peace that only comes from God the Father.

The next few weeks will test me, Tom & Emmie. We will be tested spiritually, emotionally and physically. The task at hand is no small task, but it is what God is asking us to do. Difficult decisions have already been made for Emmie, and I'm sure there are more to come. I just pray we are doing what is right for Emmie. So please continue to pray for us. Pray on Monday every chance you get, pray every time we pop into your head over the next few weeks and months.

Surgery is Monday. 6:30am check in time, 7:30am start time, which probably means they'll take her from us around 7:00am, which will be the hardest part for me. Then 6 to 10 hours of surgery. We will get hourly updates, and I'll update on facebook and text message. I'll blog at the end of the day, hopefully, as long as I have time and Emmie is sleeping peacefully.

Thank you just doesn't seem like enough. Thank you for reading, praying and supporting us!!

Psalms 28:7 The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.