So obviously I missed a night, because I was sleeping at the hospital. We do have a lot of updates though, so I will quickly fill you in on both days.April 1st:
I met with a lot of doctor's on this day. And found out a lot of new information, that we will have to deal with in the future.
First, I met with the hematologist to discuss our family history of blood clots and to discuss Sadie's blood clot. She informed me that they would have her on Lovenox shots twice a day for at least six weeks and probably more like three months. This means that once we get released, we will be responsible for giving her the shots. That is a hard pill to swallow, as you never want to see your child get a shot.. let alone give them one. However, we will just have to put our big kid pants on and do what is best for her.
Second, I met with the nephrologist to discuss her double collecting system and hydronephrosis. He said that we would do a VCUG (a test where they inject a contrast agent through her bladder to determine if the urine is refluxing back into the kidney) to determine how severe her hydronephrosis was and to see if their was a cyst at the top of her ureter. If there is a cyst, it would require a "procedure" to remove it. Depending on the severity of the hydronephrosis, we may possibly need surgery. However, he explained that sometimes the body heals itself (or God steps in and provides healing) and it can correct over time. Either way, he wanted to do the test tomorrow (which is today) and go from there.
Third, I met with the Ear, Nose, Throat Doctor to discuss the growth of her cystic hygroma. Throughout my entire pregnancy, we knew that Sadie had a cystic hygroma (a collection of fluid on the back of her neck.) However, when she was born we thought it had resolved as she had no fluid, just excess skin on the back of her neck. A few days after she was born, they did an MRI of her brain and did see a small pocket of fluid they believed could be left over from the hygroma. Fast forward to a few days after her surgery, the excess skin was no longer empty it was filling with water. So, when I spoke with the doctor, she explained that a lot of times people think they resolve completely and they do not. She said that a lot of times infections can cause them to start growing again. Well, she did have e-coli so we thought that was the problem. She said that the location of the hygroma is a good one though as it should not cause any problems. So, assuming it does not continue to grow or get infected, we will just deal with it at a later point.
As you can see, we still have a long road ahead of us. But, we are trusting completely in God's plan for her life and our lives. We can not wait to see what He has in store for both of our precious girls!
On a positive note, Kinsley and Sadie got to meet for the first time. When Kinsley first walked in the room I was holding Sadie on top of a pillow and Kinsley just kept pulling on the pillow trying to get to me. Later, we let her see Sadie and the crib and she seemed to be more interested in the toys in the crib. It was still cute though and we tried to get a family pic and failed.. Hopefully we will be able to get better ones when we are discharged.Now, lets move on to today..
April 2nd:
I arrived just in time for rounds, and they started with us so that she could be taken for her VCUG. The first thing we spoke about was her chest X-ray, up until this point they had been coming back clean. Well, today her right side looked a little hazy. One of the doctor's was concerned and another was not- so we would talk about that later in the day. Then we talked about feeding and I got some more crazy news. They told me, that when we went home she would more than likely still be on the NG tube and we would need to learn to insert and remove it. The NG tube is inserted through her nose and takes the food directly to her stomach. This will require some more big kids pants for us for sure. Everything else seemed to be on track, so these were our major thoughts for the day.
Soon after, they rolled Sadie down for her VCUG. About 30 minutes later they came back saying they could not do the procedure because she still had dye from her barium study, so they would have to do it another day.
As the day went on, I spent a lot of time with Sadie and got to feed her multiple times. She did great each time! She was never short of breath or frustrated and the last time I fed her, she stayed awake until the end and then after. These are great improvements as we can see that her endurance is building.
Before I left, I spoke with my nurse and asked her to have Dr. Sullivan check her hygroma as I thought it was growing. She said she would and I headed out. I had to leave earlier than normal today to take Kinsley to the doctor. Doctor Mary did her 15 month check up and said she was as perfect as could be! She did not like her shots, but got over that quickly when I let her play with the wind chimes in the room.
After taking Kinsley to the doctor, we went home played, ate dinner and then Zach and I left her with my mom and went back to the hopsital. When we arrived at the hospital, I got ready to feed Sadie and we received a call from Dr. Sullivan. He wanted to let us know he was concerned about the hygroma and the lungs and had spoken with the geneticist and the ENT doctor concerning the issues. He thought the fluid on the right lung and the growth of the hygroma could be from a number of things, including the hygroma, a leaky valve (due to Turners) or possibly the fat content in my breast milk. So, he said they were planning to up her dosage of lasix (a medicine that helps her get rid of excess fluid) and continue to watch everything closely. So, we are waiting now to see how this will proceed.
Verses of the Day:
"Some trust in chariots and some in horses, but we trust in the name of the LORD our God." -Psalm 20:7
The last two days have been days where I have started to doubt and have had to call on the Lord's name multiple times. It can be so discouraging when you just feel like you keep getting bad news. However, I have to remember to look back to the good things He has done. For instance, if you study Turner's syndrome you would find that 99% of conceptions end before the baby is born. That means our sweet Sadie is in the 1% who make it! What a miracle. I can also think back to a time when I thought we had heart, spine, brain and kidney problems because of different "findings." Yet, we do not have all of that. So I will choose not to trust in "chariots" or "horses." Rather, I will trust in my God! I will trust that this does not surprise Him and will not surprise Him! I know that fear will continue to creep in, because I am only human- but knowing this verse and having it hidden in my heart, I can use it to throw in the devil's face!
Praises for the Day:
1. Kinsley's 15 month check up was perfect!
2. Sadie's feedings are going great!
3. Sadie's vital signs all look great.
Prayer Requests for the Day:
1. For the "hazy" look of her right lung. Pray that it will clear up, or the doctor's will be able to find the source.
2. For her cystic hygroma. Pray that it does not get infected and that we can figure out why it is growing.
3. For her kidney's- pray that they do not become infected and that we make wise decisions moving forward.
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