Get Ready For A Long One...

Well, it has been a while since I have posted here, because we have spent a while at home. Since Sadie's ureteral reimplantation and G-tube placement surgery, we have only had one visit to the hospital (a quick ER visit after her G-tube was accidentally pulled out). It has been wonderful having time at home with our family of four. We had the pleasure of spending a very wonderful, and memorable Thanksgiving at home with my family, that was also heartbreaking as we lost my Aunt Linda to a hard fight with cancer. Then we got to travel to Tampa for Christmas with Zach's whole family. During this time, Sadie blossomed she began to talk, roll around and got very close to sitting up on her own. It was amazing to see her happy and healthy. It was wonderful for her to begin to trust strangers and not see her examine every person as if they were a threat. She was thriving- but we knew this was a short lived experience. We knew she would have another major hump to face- her second open heart surgery.

Surgery was originally scheduled for January 28th, but then moved up to January 14th. On Friday, January 9th, we received a call that her surgery would be moved to the 21st. We were so ready to get it done with, that it was extremely deflating- but we knew God was in control. So, we held on for an extra week and prepared for our pre-op appointment on January 20th.
 

January 20th arrived and we showed up at the hospital at 10 am. We knew it was going to be a long day, but did not realize just how long. After speaking with the surgeon's P.A. and telling them of Sadie's runny nose and slight cough, we were told surgery may be postponed again, but anesthesia would make the call. Immediately my worries switched from worrying about the actual surgery, to worrying about if we would have surgery. Looking back, I know that was actually a huge blessing in disguise. So, we waited to speak with the anesthesiologist.. and waited.. and waited.. after waiting for what seemed like forever, we spoke with one anesthesiologist who thought Sadie was okay, but was not the final say. She sent us for an X-ray. By this point, Zach had to leave, but Fred showed up to save the day. He stayed with Sadie and I through the rest of the day. Sadie did not like her x-ray, but made it through. After seeing that her lungs were clear, we waited for the lead anesthesiologist, he was actually the one who worked with Sadie for her first surgery. He listened and looked and decided that she was good to go, so it was off for blood work. Unfortunately, they sent us to the lab and the nurse was unsuccesful. On her first try, she made the tourniquet too tight and gave Sadie peticia. After that, she refused to try again (which I was happy about). We went back upstairs, not sure of what to do. I suggested we call the PICC team, and Fred made the call. Holly came to our rescue and she and Pam drew the blood succesfully. After seven hours there, we had the record for longest pre-op and the all clear to go home. I packed Sadie up in the car and headed to get Kinsley. As I pulled into UC, my phone started ringing- it was Dr. Lacey. I nervously picked up. She informed that Sadie's white blood cell count was high and that we could either check into the CVICU early for more bloodwork or cancel surgery... we opted to check in early.

The evening of January 20th was just as eventful. After we checked in, they did a urine check and tried to get blood- but failed. The PICC team was off and Sadie's veins roll- after two nurses trying two times, they called Dr. Ceithaml (her surgeon). He told them to stop and I went to bed wondering if surgery was happening...

The morning of January 21st, I woke up and started to get ready.. we were on for surgery. After signing all of our papers, we rolled down to pre-op and said our goodbyes. As a parent, this is probably the hardest part. Even though I know God is in control, Satan still creeps in my mind and tells me this could be the final goodbye. At 8:30, after many tears and pictures, they took Sadie back. It is a crazy feeling watching them walk away with your child. Part of you wants to scream, "NO", but the other part knows it is for the best. We headed to the Ronald McDonald room and began our wait. There are many days where I walk by the room and see families in their, or in the general surgery waiting room, and I wonder. I wonder where their child is, what they are feeling, what they are facing. Then, I pray. And today, I could feel the prayers of everyone around. It is crazy how God can give you such peace in the hard times. It is times like these when I am so thankful to know Him. I do not know how people could face these situations without Him by their side. Sadie's verse is Exodus 14:14: "The Lord will fight for you; you need only to be still." Not only was He fighting for my baby on the operating table, He was also fighting for me and everyone else who loved her. Our first call told us that all of the lines were placed and that Sadie was intubated. Next, they would begin to cut through the scar tissue. We knew this would be a long process as they had to be very careful not to cut anything important. At 12:15, we received the call that Sadie was on bi-pass, the real work had begun. During this stage, they would remove the stent in her PDA, reconstruct her aorta, close her VSD, remove the subcutaneous membrane below her aortic outflow track, remove the bands off of her pulmonary arteries and repair her pulmonary arteries. During the waiting time, we had the pleasure of running into Dr. Lacey who gave us a quick update. They had successfully resected and added onto her aorta and they had closed her VSD. They were moving onto her pulmonary arteries but they had a lot of work to do. Around 3:30, we received the call that they were finished. They took her off bi-pass and began the watching process to ensure everything was good. More waiting. After what seemed like an eternity, we got to meet Dr. Blyweis. He informed us that the surgery had gone as well as could have been expected. Unfortunately, due to the banding, her pulmonary arteries were in bad shape but they repaired them as well as they could have. We were told we would need intervention in the future, but hopefully that can be accomplished through the cath lab. Her aorta was succesfully repaired and the VSD closed. The membrane below her aortic outflow tract was "unimpressive" so they left it alone. Around 5:30, we got the call that they were about to bring her up to the CV unit. We were ecstatic- we would get to see our baby girl soon.

Well the clock ticked... and ticked... and ticked...! At 6:00, we spoke with Dr. Ceithaml and then shortly after we spoke with our anesthesiologist, Dr. Bryskin. Then.. the clock ticked.. and ticked.. and ticked.. I began to worry, but after a few calls to friends was calm again. Finally at 7:30, 11 hours after we left her, we got to see our precious girl again. It was a scary and beautiful sight. Seeing your child after surgery is something I can not explain. She did not look like my baby girl and was still heavily sedated. Her chest was open and only covered by a thin covering- we could actually see her heart beating under the covering- and we touched it. When we looked up at the monitor, we saw a million numbers- they were monitoring heart rate, blood pressure, chamber pressures, temperatures and so many other things. The greatest number was seeing her saturations. Most people live at 100%, meaning that their blood is fully oxygenated, Sadie had been living with her saturations in the mid to low 80's. And hers were now showing up as 100! It was great to see. We had made it through the first big step- now to step 2... RECOVERY.

The next couple of days were a blur. Although Sadie was on very strong medicines, she was still fighting hard and required a lot of narcotics. To give an example, she used an entire bag of Fentanyl in one day. This would take the average person four to five days. Because of all of her surgeries and hospitalizations, Sadie has developed a strong tolerance for the medicines. Our biggest accomplishments came on Friday and Saturday. Friday, they closed Sadie's chest. The OR team came into the room and stitched her up. Then Saturday, they extubated her, removed her chest tubes, and removed her pacing wires. It was amazing to see the difference. as soon as they removed all of that- she relaxed. She was no longer requiring boluses of medicine and she began to sleep- she slept for two days straight. After she slept, we began the process of weaning her off of her narcotics. This was a very hard time for me. Sadie was not Sadie- she was awake for two days straight- but she was not her. She was not feisty, nor was she was loving. She did not seem to recognize me or anyone else. We even brought Kinsley into the room and she barely responded. Sadie LOVES Kinsley more than anyone else- so this was shocking. I asked Fred if it was possible for her to have a personality change and he assured me everything would return to normal. He was right, but I was very nervous while I waited.

When you are in the NICU, you are often told to expect things to be one step forward and two steps backward. It felt like this at times, but we were very fortunate. Sadie did great from a heart standpoint. Her function was beautiful. Our biggest hurdles were lungs, fever, blood clots and feeding. Sadie had a very high fever for 6 days post-op. We sent multiple cultures (blood, urine, and sputum) but everything came back negative. Her lungs were also surrounded by fluid, so we had to do multiple x-rays and just had to wait for it to clear up. Sadie also developed another blood clot in her right leg. Shortly after surgery, I noticed that her right leg was colder than her left and requested an ultrasound. Unfortunately, the results came back that she did have a blood clot. Sadie will have to have shots twice a day for the next 6 to 8 weeks. At that point, if the clot is done, we will be able to stop.  In the area of feeding, Sadie began vomiting. So, we had to rework her feeing schedule. We started slow and are still working..


I write all this now, as we are back in a good place. Sadie's heart is doing great, she has not had a fever in 3 days, she is eating again (even a little by mouth) and her lungs are clear. She is still in some pain, but my baby is back. I have had smiles, I have had laughs and I have even had my crazy feisty baby back. Our recovery process has just begun, but we have faced the biggest hurdle. Although Sadie will need more surgeries in the future- we should have a good break. We should get back to the point of letting her be a baby. Our next major hurdles should be crawling, talking, teething, temper tantrums, potty training.. all the things parents look forward to and dread. We know that we are so blessed to have our sweet Sadie and are ready to face whatever the future throws at her and us.

We have been extremely blessed through all of this. Blessed by our families, friends and our family at Wolfsons. Our families have been by our side through everything. My parents have been by our side constantly as they live here and help us with both of the girls and are a constant support system. Zach's parents and siblings have spent countless weeks and weekends up here- helping us clean, take care of the girls and providing us with love. Our friends have prayed for us, cooked for us, donated for us and have constantly loved on us!  The people at Wolfsons have become our second family. As Sadie has spent over 100 days in the hospital- the nurses, doctors, techs, ACPS and staff have become our friends and family. I know that each person cares for Sadie as if she were their own. Their positive attitudes and constant warmth bring a smile to my face. I am excited to see who is working each day as I get to spend time with them. I love that I know Sadie is well taken care of and loved. This is a blessing I can not explain.