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.

Splash Mountain

The past seven months have been a whirl wind of emotions. As I sit here typing, I am trying to think of something to compare it to and my first thought is a roller coaster, full of ups and downs, excitement and screams. But the more I think about it, the more I realize this is not just any roller coaster, it is Splash Mountain.

Splash Mountain is unlike most roller coasters we see today, as it has a story and I think that story resembles everything we have faced. You board your little log and start with a steep climb up hill, followed by a short drop to a briar patch. This is the introduction to the ride, the notice that something is starting soon.  For us, our introduction was not a briar patch, but nausea. I felt the nauseous feeling and knew we would be having another child soon. After taking a test, it was confirmed, God had blessed us with a second child.

After making it through the briar patch, you get to see the "daily life" of Brer Rabbit, where everything is good and he is "just living." Doing laundry, and avoiding Brer Fox and Brer Bear. For us this was the time up until our 20 week sonogram. We were just living, day by day, preparing for Sadie's coming, without a hint of the trouble that was ahead.

About halfway through the ride, you begin to see the dangers as you are meet Brer Fox, who has captured his buddy Brer Bear at this point. For us, that was the 20 week appointment when we found out Sadie had heart issues, kidney issues and a cystic hygroma. We were just living life, expecting to receive a report on the gender of our baby and instead were told that our baby was very sick.

As Splash Mountain continues, you come to a quick little drop that takes your breath away before entering another scene that shows more of Brer Fox and Brer Bears gimmicks. We had our breath taken away when we discovered that Sadie had Turner's Syndrome and began to learn more about the health complications she had.

After this scene, you get to make the climb up to the big fall. As you are on the climb, your heart begins to race a little as you know what is following. But, at that point, no matter how scared you are, there is no getting off. You are stuck, for better or worse. And you just have to trust that Disney had  plan and this was part of it. That they had built a safe ride and that you will be okay after the drop. For us, this climb was the time leading to her birth. It was hard and scary at times. Sometimes we were not sure where the climb was taking us. We were not sure that the drop would be a safe one. We were nervous but knew that we had to trust in God, trust that He had a plan and that this was part of it. That we would be okay after the fall.

Well on Splash Mountain, after the climb you fall. The fall is fun and terrifying all at the same time, as you plummet 45 feet down right past the thorns. Then your log brings you to Brer Rabbit's Laughin' Place where he is safe and everything is good. Then you are taken back to the beginning where you get off and go join a new ride.

Unfortunately, I feel like we are stuck on the last three stages. We have a climb, fall and then happiness. Our climbs have been days before surgeries and big events, our falls are the surgeries and events and our happiness is the time in between where Sadie gets to be home with us.

Well my friends, we are on another climb. Sadie has been admitted into the hospital twice this week with a fever. Sunday night, we took her to the ER and were admitted to the CVICU. After running tests and finding nothing of concern, we were released Tuesday night. We fell and reached safety once again as we were allowed to go home.

Our next climb began as we were told she would most likely be having her second open heart surgery the following Wednesday. We knew that the surgery was coming soon but were shocked it would be that soon. Anxiously, I awaited a call telling me it was official. Well as we waited, the climb got even steeper. Thursday morning (two days after we had been released) Sadie developed another fever, but this one was higher than the last. So, we contacted our amazing cardiologist, Dr. Lacey (who I am so incredibly thankful for) and she got us a room in the CVICU. Once we arrived, we learned that we would not be having surgery next Wednesday (due to scheduling issues). We also learned that we would be staying until her surgery, whenever that is. So here we are.. stuck on the climb.

I must say that this climb has had "mini falls" as we have done testing and so far her blood and urine looks clean. This is great news, but also bad as we do not know what caused her fever. At this point, we are just hoping it was a viral infection.

Tuesday morning, the cardiologists, cv surgeons and our urologist (Dr. Barraza) will meet and discuss Sadie's case and hopefully come up with a plan.

Throughout this entire experience, I have been trusting God, but have also been trying to "manufacture my own miracles." Well, I have resolved that I will stop that.. I will let God do the manufacturing as His plans are far greater than mine.

Pray for wisdom for all involved in Sadie's care and peace for me as I am learning to sit back and trust. Pray for our family as this is all very stressful and is very hard on all of us. And pray for Zach as he is staying with Sadie tonight and they are currently trying to place an IV. At this point, they have tried three times unsuccessfully.. Pray long term that her veins rejuvenate as they are running out of access points.

As soon as I know more about Sadie's upcoming surgery, I will let you know.

If you ordered a Sadie shirt, thank you so much! We know we will definitely have them in time for the surgery as it has been postponed. Please post pictures of yourself wearing them so we can show Sadie all of the people who were praying for her and supporting her during her surgery!

Love you all,

Candace, Zach, Kinsley and Sadie

And so it begins again...

Today I received the call that would set up the first step towards Sadie's next heart surgery. Of course I have known all along that the day was coming again, but this makes it feel even more real. The anticipation and excitement remind me of the moments before cheerleading competitions in high school. I absolutely loved competing, but the moments before were always the worst. As I stood back behind the curtain waiting for our team to be called, I was incredibly nervous. My heart would beat fast, my hands would I shake and I would always have to pee. Of course, I know it was adrenaline and it was part of what would fuel me out on the floor, but it was a terrifying feeling. Once I was on the floor and the music started, my body knew what to do and I was once again at ease and having fun... but I just had to make it there. Well, that is the feeling I am experiencing now. I know that we must have surgeries to help Sadie be healthy, but I am terrified of the process that get's us there. I know, of course, that it is in God's hands and He has a plan- but I just wish I could fast forward through the whole surgery part. So, on to the update --

Next Friday, October 3rd, Sadie will have her second heart cath and her first TEE. They will use both of these tests to examine and measure her heart so that we can make the best possible decision for her second open heart surgery. They will need to put her under anesthesia to do the procedure, so that is scary, but the heart cath itself should be relatively easy. At this point, the plan is to do a two ventricle repair. Dr. Lacey and the other cardiologists all belive that her left ventricle and surrounding valves have grown enough so that she can have a "normal" functioning heart. Although it is a major surgery, it would mean we would not need to do the Norwood, Bi-directional Glenn and Fontan. After the cath, Sadie's cardiologists and surgeons will meet to discuss which direction they believe will be best for her, pray for wisdom in this decision!!!!

For now, I must give praises for how well Sadie is doing. It has been amazing seeing her grow and blossom. She loves kisses, tickles and her family. When Kinsley comes near her, her little face lights up in excitement. Our faces cringe in fear as we get nervous that she may trample her, but Kinsley is usually very sweet. She gives her hugs, kisses and even likes to "hold" her. Her hygroma has shrunk significantly, and I believe that is because of prayer and the fact that she is finally healthy. It has been wonderful to see her be happy for extended periods of time. For a while there, she was constantly in pain and it was so hard to see. As a parent. you feel hopeless seeing your child suffer and knowing there is nothing you can do to help them. I often think that must be how God feels when He sees us stray from His plan for our lives.

As far as feeding is concerned, Sadie still will not eat enough by mouth to sustain herself. Every Saturday, when we change her NG tube, we let her keep the tube out for two feeds to see if she will possibly decide to eat enough, but at this point she is only eating approximately half of what she needs. It is so frustrating as I just wish that I could convince her to eat, but unfortunately she does not understand. Once again, I know God must feel that frustration when we stray, yet we do not listen either. We have tried feeding her sweet potatoes, and she has done okay with it. The first time I tried giving her the spoon, she just batted it away and cried. So, I dipped her pacifier in the sweet potatoes and let her suck it off. Then after multiple times, I was able to switch it to the spoon. I am not sure how much ended up in her belly and how much ended up everywhere else, but it is a start.

From a urological standpoint, we have had multiple appointments and Dr. Baraza is confident that we are doing good for the time being. We will have to have major reconstruction surgery, but we will wait until approximately six weeks after her heart surgery. The new medication she is on is working at this point to keep away infections so we are thankful and still praying that she will not become immune to it.

Verses:

Ephesians 4:17-24

17 With the Lord’s authority I say this: Live no longer as the Gentiles do, for they are hopelessly confused. 18 Their minds are full of darkness; they wander far from the life God gives because they have closed their minds and hardened their hearts against him. 19 They have no sense of shame. They live for lustful pleasure and eagerly practice every kind of impurity.

20 But that isn’t what you learned about Christ. 21 Since you have heard about Jesus and have learned the truth that comes from him, 22 throw off your old sinful nature and your former way of life, which is corrupted by lust and deception. 23 Instead, let the Spirit renew your thoughts and attitudes. 24 Put on your new nature, created to be like God—truly righteous and holy.

These verses remind me that I should not stray, I should trust and follow His plan for my life. I am no longer in the dark, I am a child of His light and as so, I should act like it! He knows what is best for me and therefore I must do my best to trust Him and follow His plans for my life. Please help me accomplish this by letting me know if my sinful nature is showing.

Prayer Requests:

1. Wisdom for Sadie's doctors as they make decisions in the near future

2. Continued protection from infection

3. Wisdom as we decide what path to take with her hygroma

Saturday, July 19th- Home from the Hospital

For those of you who have been paying attention to my Facebook posts, you know that we made it home from the hospital yesterday! Although it was a very long and unexpected trip we are very grateful for it as we saw a number of small miracles through it. God has great timing and Dr. Lacey has great instincts.



Our trip back to the hospital officially started on Wednesday, July 2nd. However, it was somewhat initiated on Monday, June 30th. And to confuse you even more, we were not actually admitted until Sunday, July 6th. Let me explain. As you know, Sadie also was admitted to All Children's Hospital in St. Pete in the end of May for a UTI. Well about two weeks before we actually discovered she had the UTI Sadie stopped gaining weight. Then she got fussy and finally she developed a fever. So, we saw a series of events that led to us discovering she was sick. Well about three weeks ago (one week before she was admitted), Sadie stopped gaining weight and started getting fussy. Monday, June 30th she was pretty inconsolable for about 45 minutes. I texted Dr. Lacey with my concerns and asked her what I should do. She said that if I was nervous, I should trust my instincts and go to the ER. I texted her back saying she had finally calmed down but that I was still a little concerned and that I did not want to be a crazy mom who was taking her baby to the ER just because she was fussy. She let me know I was not crazy and that she would back my decision or that I could bring her to the hospital the next day if she was still fussy or just wait until Wednesday for my appointment. Well the next day, Tuesday, Sadie seemed to be doing a little better so I decided wait until Wednesday.

My mom went with me to the appointment and noted on the way that Dr. Lacey may want to admit her to the hospital. I was oblivious and told her she was wrong.... turns out I was wrong. After seeing that Sadie still had not gained weight, Dr. Lacey said we should do a 24 hour stay in the CVICU to try to get her eating better and to assess her to ensure she did not have a UTI. She called the CVICU and was told all of the beds were full. Since she did not want Sadie going anywhere else in the hospital, we decided to wait until the next day for a bed to open up. Well, the next day we received a call saying there still were no open beds, but one would be open on Friday and to be prepared to check in around 10. Friday morning, Dr. Moon called to say that there would not be a bed open until 12, but that we could possibly wait since we had a list of doctors we wanted to see and he did not want us stuck all weekend (that Friday was the 4th of July so a lot of doctors would be hard to see.) So, we gladly agreed to check in on Sunday around 10.

The week of Fourth of July has always been our family vacation with my mom's side of the family and now includes my dad's side as well. So, we packed our bags and headed to St. Augustine, hoping to be able to return Tuesday morning. The weekend was fun as spent time by the pool and playing games, but it was very short lived. Sunday morning, we packed most of our things and headed to the hospital to check in. After arriving, we got settled in our room and waited to see how things would unfold. After testing, we discovered that Sadie had an infection, called pseudomonas. Apparently, this is a very strong bug and they were shocked that she did not have a fever or any other symptoms other than fussiness and lack of weight gain. They consulted with ID and determined that we should be on IV antibiotics for 10 full days. Our 24 hour stay quickly jumped to a 240 hour stay (at least).

While we were there, we did get a lot accomplished. The short version would say that she gained weight, we got new options for her hygroma, found out about medical daycare and that we hopefully solved her UTI problems. For the long version, keep reading...

Sadie sporting her new NG tube.

Shortly after arriving, Sadie got mad. And when I say mad, I mean MAD. She screamed for two and a half hours - non stop. We tried bouncing, walking, singing, eating, Tylenol and every thing we could think of but nothing was working so we took the plunge and put in the NG tube. This is a little tube that goes through her nose to her stomach so that she can be given food, even when she does not want to eat. Unfortunately, after that episode Sadie stopped eating a lot by mouth- however she still received 80 ml (a little over 2.5 ounces) every three hours through her tube. As a parent, it is frustrating to see your child go from eating every thing by mouth to completely refusing to eat- but she was getting the nutrition she needed without having to work so hard. Sadie started her hospital stay at 7 pounds, 2 ounces.... drum roll please... As of today, Sadie is 8 pounds, 10.5 ounces. She has gained over a pound and a half in two weeks! That is amazing!!! We are still working on feeding by mouth and she has done somewhat better here than at the hospital, but we are still relying heavily on the ng tube. I have been trained and have already had to reinsert it once since we have been home- but luckily I have an amazing friend who is also a nurse, Alex, who came to help. I like to be on the extra safe side!!!


From a ENT standpoint, we also have some new developments. Although we have not made any decisions, we have many options as I have spoken with three different doctors concerning Sadie's hygroma. One doctor believes we should surgically remove the hygroma, while two others prefer using sclerotherapy (multiple injections into the hygroma that will allow it to scar down.) I am still doing research to see which option will be best for Sadie. Inititally, I was completely opposed to sclerotherapy as I thought we would have to go to Orlando to have it done, however now I believe it can be done here so I am open to it again. We will not do anything about it until after her next heart surgery, so I have time to decide.

While we were there, we did make a big decision from a urological stand point. We previously knew that Sadie has a seal on the bottom of her upper right ureter that was causing her to get UTI's. Dr. Mercer, our urologist, wanted to do surgery but Dr. Lacey, our cardiologist, wanted us to wait to ensure her heart was strong enough to undergo anesthesia. After discovering she had another UTI, it was decided that we needed to do something now so that she could stay healthy. So, Dr. Mercer spoke with an interventional radiologist, about doing an alternative procedure that would not require anesthesia. So, the interventional radiologist and his team attempted to use a tiny needle and ultrasound to poke holes in the bottom of the seal so that it could drain some. Before starting the procedure, they gave Sadie a small sedative and some pain medication so they could do the procedure. Unfortunately, they did not realize how feisty our sweet Sadie is. After trying to get her to be still for over half an hour, they started talking about using a drug with anesthetic qualities. Fortunately, Fred was in the room and knew that it would not be okay for Sadie to have that drug. He called in our cardiologist and the procedure was stopped. So, we were back at the drawing board. After some chatting, it was decided that Sadie would use a cardiac anesthesiologist and the smallest amount of anesthesia and undergo the traditional surgery. So, Thursday morning they took her to the OR and performed the procedure. Everything went smoothly and we believe it was successful! One drawback is that this surgery will cause kidney reflux which may mean another surgery down the line. Although this is not good, we are thankful that she should stay healthy for the time being and we are praying the reflux will be so small that it will not be necessary for her to have another surgery for that.

Mommy and Sadie taking selfies in the hospital crib!

Now onto the medical daycare discovery. One afternoon, I was sitting in Sadie's room talking with her nurse. She asked me if I worked. I told her I was a teacher and that I had not worked since she was born but that I was going back in a few weeks. She then asked what I was doing with Sadie while I was working. I told her she would be attending the daycare at my school. She laughed and told me that was not really possible and that she would need to attend a medical daycare. I said that would be awesome but that I did not think there would be any way we could possibly afford it. She then told me medicaid would cover it all! So, I toured a place and am now waiting on approval! What a blessing. All of the people who work there are nurses and will be fully equipped to help Sadie!!

Sadie and her Uncle Fred!

While I was in the hospital, I also got to spend time with so many wonderful people. I am so blessed that Sadie has so many people who care for her. From the doctors, nurses and ACP's to our friends and family. I am so thankful for the team of cardiologists that are so protective of Sadie and want the best for her. Dr. English and Dr. Lacey both stopped by to check on her when they did not have to and were working behind the scenes to ensure she was receiving the best care. Stacey, the nurse practitioner was constantly working to ensure we spoke with all of the doctors we needed to. Fred spend countless hours with me providing friendship and encouragement, and he was also on the sidelines fighting for Sadie when he needed to and calming her after surgery when no one else could. I got to spend time with Brittany,who started as an echo tech and has become my friend. I was also able to spend time with wonderful nurses and ACP's who do there best to care for Sadie as well as offer encouragement to me. All of the speech therapists at Wolfson's are also amazing. They offer sound advice, great tips and even better encouragement. I always feel so good after talking to them, even when it is a difficult feed. Even the janitorial staff at Wolfson's always has a smile on their face. It was such a blessing for Mrs. Cheryl to be so considerate as she would not come in if Sadie was sleeping. She also took the time to come say goodbye when she knew we were being discharged. The security guards and cafeteria workers were always pleasant as well. When you are exhausted, scared, and confused it is amazing being in a place where so many people care and do their best to fight for your baby! I can not imagine being in another hospital where I would feel more comfortable.

Krissie, Emerie, Sadie and me!

In addition to the people at the hospital, I was also thankful for the support from friends and family. From Facebook comments, to visits, to overnight stays it was all so helpful. Each time someone lets us know they are praying or even just likes our statuses, it brings encouragement as we know that so many people care. We have been so blessed to meet Krissie, Monte, Emerie, Cortez, Carl and Jackson. Having them stop by to visit and drive up (an hour and a half) for ice cream was so fun and uplifting. I can not tell you how I have been blessed by being able to travel this road with their wonderful family. When so many of our lifegroup friends showed up at the hospital just to see Sadie and spend time with us, it helped to relieve stress and provide laughter. When our sweet NICU nurse, Heather, came up to the hospital on her day off to snuggle with Sadie and chat with me, I was so excited. When my dear friend Kelli stopped by to hang out, I was immediately reminded of the wonderful support system I have through University Christian. When my mom, dad and Aunt Leslie volunteered to stay the night with Sadie so that I could spend time at home with Kinsley and Zachary (and catch up on some much needed sleep) it was inspiring. And, knowing that Kinsley was so well taken care of and loved while we were up here with Sadie was also a huge burden lifted. Even this weekend, Zach's family came up to help out, see the girls and bring us joy!!!!! Today, we had the privilege of being able to relax and play in the pool with the kids, while Donna worked hard cleaning my house. And, she is even planning on coming back next weekend to help some more. Although our lives are not the easiest at this moment, it is still so amazing to see just how blessed we are by our sweet Sadie and all of the amazing people in our lives. So I thank you, because if you are reading this, I know you are one of those people and I am honored to know you!

My dad and Sadie!

Mimi and Sadie

Spending time with Kinsley at the beach.

So blessed to have both of my girls with me at the hospital.

Aunt Honey stopping by for a peek

My sweet Kinsley

Just hanging out.

Trying to get a picture of the girls together...

Sadie and Aunt Linda

Three months old

Heading to Tampa

It has been a crazy few weeks to say the least with a lot of ups and downs. Through it all, God has remained faithful. First, I am blessed to say that two people who I love very much have both made it through successful surgeries! Last Wednesday, Emerie had her second heart surgery- and the surgeons said she rocked it! There have been a few bumpy days after the fact, but hopefully she will be allowed to go home tomorrow. Continue to pray for her family as there are some new unexpected complications. Now onto the second, my nephew Alex had "brain" surgery yesterday. I put the brain in quotations because I do not know all of the specific medical details. What I do know is that he did awesome! He is currently recovering and is enjoying popsicles and movies! The greatest part of all is that he has been so brave throughout the entire process. God works in very cool ways and worked out the timing of VBS perfectly for Alex. Initially, Alex's surgery was scheduled for last week- which means he would have missed VBS. Due to some scheduling conflicts, the surgery was moved and he got to attend VBS. Well, the entire theme was "I can count on God" and you better believe that Alex paid attention. Rather than being nervous before his surgery, he was ready to go- knowing that God would get him through! What an amazing young man he is already.

In the CVICU at All Children's.

Snug as a bug!

As for Sadie, we have had some new developments, but a lot of the same stuff. I think the craziest part occurred when we decided to go to Tampa for Kristin and Drew's wedding. We arrived Wednesday night and were up pretty late with Sadie, who was extremely fussy. Well we noticed she was warm, took her temp and saw she had a fever. I called my pediatrician who sent me to the ER. Before we even left, we were told that All Children's Hospital in St. Pete was the place to go- if we needed a doctor. Of course we thought we would never have to go- but alas at 4:30 in the morning, we were throwing things in a bag and making the trip. Forty five minutes after we left Zach's parents house we arrived at the hospital and were immediately taken back. After running some tests, we learned she had a UTI and parainfluenza. We were admitted and made it out of the hospital just in time for the wedding. It was definitely different being at a new hospital and really made me miss our "home" at Wolfsons.

Our first good family photo at Kristin and Drew's wedding!

Weighing Sadie, something we do every morning. And a free
bit of trivia --> a Newborn Pampers Diaper weighs .02 kg.

Well after our visit to the ER, we came back and had a renal ultrasound and an appointment with urology. Dr. Mercer looked at the results and determined we should do a small surgery for Sadie. I let her know it would probably not be approved, but we scheduled it anyways. Shortly after, we visited Dr. Lacey who said they could "get in line" haha.. so, we are postponing that surgery as well as the one to remove her hygroma. We are just praying that we will not have any more UTI's. One of the biggest problems with her getting the infection was that her body was working so hard to fight it that she stopped gaining weight. On top of that, Sadie started having reflux issues. We went through a three week period of no weight gain, that almost put us back in the hospital. Dr. Lacey changed her Zantac dosage and had us starting adding rice cereal to her breastmilk, along with the formula and I am happy to report that she gained 3 ounces in a week! We were so very excited and Dr. Lacey said we did not have to admit her to the hospital! Praise the Lord!!!! As far as her heart is concerned, they say it is growing great and at this point we may be looking at her having a full four chamber heart!!! Of course, we are still just waiting on her to grow at this point.

Showing off one of her new tricks...
How old is Kinsley?

Kinsley playing in "her" cabinet!

Overall, I must say it has been so much fun being able to stay home with the girls. Our lives are hectic as we go to a lot of doctor's appointments, but it is also so fun! Kinsley is adding more words to her vocabulary each day. And her personality is just so cute. She loves her sister, loves Frozen, loves being outside and loves to play!! She has also started singing... well just a little bit. She sings the word "door" in the song "Love is an Open Door" and the "oooooo" at the end of "Achy Breaky Heart." Sadie is definitely a momma's girl at this point. There are a lot of times where she will only be happy with me- which is wonderful but can be stressful as I want her to be okay with other people as well!


We have also been so blessed with help from so many people that I can not even begin to thank. But thank you everyone from our life group who has brought us dinner or just come to hang out- Justin, Amanda, Zane, Christine, Jarrod, Megan, Jamie, Sam, Dan, Nicole, Courtney, Lee, Erin, Shaun and Shea. Also thank you so much to our families who have helped us infinitely through all of this!!! Cassy and Aunt Linda have helped with watching Kinsley and have brought her such joy. And our parents have been beyond amazing! We love you all!!!!

May 11, 2014- 2 months, 1 day

Sadie in her Mamaroo- she loved it in
the hospital although she still does not love
it as much as she loves my bouncing!

Sadie is growing, growing, growing! She is averaging 1/2 an ounce a day and is up to 6 pounds, 5 ounces on our scale at home! She is also eating much better! We have discovered a trick that helps us when she is being crazy- bouncing!!! Who would have known? It all started when I went to speech therapy and Sadie was being crazy. I was secretly happy because I knew I could learn more tricks, and it showed my speech therapist that I was not crazy. So, after trying to get her to eat for about 10 minutes,  Nikki asked if I had an exercise ball at home. I said no, and she said wanted to try something and came back with the ball. Well, it worked like a dream! Since we did not have a ball at home, I resorted to doing quick squats (she likes big bounces) to get her to calm down and eat--- needless to say, my legs were exhausted. After a day and half of squatting to keep Sadie happy, Sam and Jamie brought us dinner and saw my struggles. So after dinner they decided we needed a ball right away (we were going to go at some point but just had not made it there yet) and went to the store to buy me one that night! Great news, it is still working like a charm. And is the best way for us to calm her down. And, as an added bonus- my legs are going to be great one day!

Kinsley helping feed Sadie her bottle. She is such a great big sister! 

In other news, we visited the urologist, nephrologist and two ENT's since I blogged last. From the urology standpoint, we know we have a possibility of surgery due to Sadie's double collecting system. We have an ultrasound scheduled for June 6th and that will determine our next move. Our doctor told us there was a 75% chance we would need surgery, so I am praying that we will be in that 25th percentile that does not! From the kidney standpoint, the doctor told me her kidneys are functioning perfectly. He does want to follow up in three months to ensure they are still okay! Finally, the ENT. We are currently seeing the ENT for Sadie's cystic hygroma. When she was in utero, we saw the hygroma weekly and knew it was going to be an issue. But, when she was born it was gone and we just had excess skin. Unfortunately, after surgery it started to fill with fluid and has continued to fill. The first ENT we saw told me we had two options. The first option was surgery. Due to the location, it would be an easy surgery and should not have any complications. The second option was sclerotherapy. I will give you the short version of what it is... Sclerotherapy is a procedure where they inject a sticky substance into the hygroma that causes it to shrink. This seems like an easier option, however they would have to do three injections and each time they injected her, they would have to put her under anesthesia. She also said that she could not do the procedure, so she would have to refer me to a doctor in Orlando. Well, I told Fred (our amazing chaplain and my personal case manager) about this and I told Alex (one of our amazing friends who is also a nurse at our pediatricians office) and both of them (through Dr. Lacey and Dr. Mary) recommended that we see another ENT, Dr. Roy. Neither of her doctors wanted her to go to Orlando for a procedure due to her complications. Dr. Roy saw Sadie and immediately did a scope to ensure that her hygroma was not causing any problems internally (which it was not.) Then he recommended that we do the surgery due to her complications. He said however that we would definitely need to wait until after her second heart surgery, as it would be too dangerous to do the surgery before. So-- now we must wait. I am just praying that God miraculously resolves it on His own though.

Lunch with Emerie, Jackson, Krissie, Sadie, Kinsley and me.
The people at Panera must have thought we were crazy!

Otherwise, Sadie is doing great and we are just working on managing things and growing for the time being. Kinsley is still being an awesome big sister and always makes sure she has her pacifier and bottles! I am so blessed to be their mom!

Verse of the Day:
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Three of the greatest blessings in my life:
Sadie, Kinsley and my dad!

I am reminded of the wonders of life daily as I see Sadie. Traveling this hard road has made me realize just how blessed we are to have life. I will never forget an encounter I had with a dad in an elevator at Wolfson's one night. It was late and I was heading up to Sadie's room to spend the night. I was in the elevator with my bags and so was a young guy with a pillow and his bags. We struck up a conversation and I asked if he would be leaving soon. He replied with a heavy heart that his child had jaundice and they would be there for a long time. As I was leaving the elevator, I almost wanted to laugh at first thinking you have no idea what a "long time" is. But then my conscience immediately struck me and I thought about how I would have felt if that would have happened to me as a first time parent. I know I would have been terrified if Kinsley would have had to stay a few extra days. Now, I have survived two and half weeks in the NICU, a week in the PICU, two weeks in the CVICU, and heart surgery. Yet, I am more joyful now than ever. I know that I have hope no matter what the circumstance is. Wether it is complete healing or if she goes home to be with Jesus sooner than we expect. I have also been reminded of that hope once again recently. Two years ago, Alexandria Levering (one of my students who I loved dearly), suddenly passed away. She would have been a senior this year, so the school and students have done a few things to honor her memory including a slide show at their senior chapel. The pictures were a beautiful reminder of what an amazingly talented, crazy, sweet, sincere, kind, loving, crazy and unique individual Alex was. They brought me to tears as I remembered the times I was able to spend with her. However, the pictures also brought me hope as I was reminded that I would see her again some day in heaven! What a beautiful blessing that is. I can not imagine not being able to have that hope. So.. I say all this to say- be joyful in hope, patient in affliction and faithful in prayer! If you are saved, you can be joyful knowing that God's Word does not return void. You can be patient during hard times because you know that this time here is just a blink of the eye compared to the pure joy we will experience in eternity. And finally, you can be faithful in prayer knowing that God's Word does not return void. And that He has promised He will answer our prayers (this does not mean He will always answer them immediately in the way we see best though)!

Kinsley on her big girl bed.. she has not moved yet though!

Praises:
1. Sadie is steadily gaining weight!
2. Sadie is eating much better she is eating anywhere in between 45 and 60 ml per feeding.
3. At our last cardiology visit, Dr. Lacey said her heart has been consistently growing!
4. Our friends Sam and Jamie just had a healthy baby boy, Graham!
5. Kristin finished her senior project (which I heard was wonderful) and graduated from Nebraska Christian College!




Prayer Requests:
1. Pray that her cystic hygroma begins to resolve on it's own and does not cause any internal problems.
2. Pray that she continues to eat and gain weight!
3. Pray that her heart continues to grow.
4. Pray that her blood clot has completely dissolved so that we can stop her Lovenox shots!
5. Pray for Kristin and Drew as they get married in 20 days!!!!!! YAY