Lautz of Love: July 2014

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!