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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!
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| 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.
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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
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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)!
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| 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
