We did the same drill today. Around 7 AM the nurse took her off of the IV fluids. All of the sudden today, Piper really wanted to drink some on her own and also really liked the broth and noodles of chicken noodle soup. She wanted more and more of that. Today the nurses and I all felt comfortable that it was safe for her to go home. Her doctor came in to see her once again. She had a piece of the alloderm (fake layer of tissue) hanging from her mouth so she had to snip it to remove it before we left. It took 4 of us to hold her down. She screamed and screamed. I felt so bad. I took Piper for a wagon ride downstairs to go to the pharmacy to get her prescriptions filled. We went upstairs and then we waited for a while until they had all of her discharge papers completed and once they were ready we were free to go. The girls and Jon came to pick us up. She was so happy to see her sisters. I think she will do so much better once we get home.
It has been a tough couple of days here at the hospital. Piper does not want to drink or really eat still. Looks like we will be here again. Her swelling has gone down some which is good. She is wanting to look at her books and play a little. She has sores at the corners of her mouths which look like they really hurt. They gave us a Neosporin cream that is 10 times stronger than the regular Neosporin. Hopefully they start to heal soon. Please pray for her to eat and drink so that we can go home. Here are some pictures from today and then below an update/discussion I had with the doctor.
Today the doctor came in and she told me that the tissue did not look well. It was dark which meant that the blood was getting to the tissue then stopping. It wasn't coming back out and flowing to and from the tissue like they would like to see. She said we can only hope that the layers underneath are doing what they need to be doing. I started to tear up. I said I was sorry and she had tears in her eyes. She said I had no reason to be sorry. She needed to apologize to me 1000's of times. I asked her if it would ever be closed through my tears. She looked at me with tears in her eyes and assured me that her mouth would be healed. She told me that she really cares about Piper and she said trust me I have had many sleepless nights over this little girl. Lots of anxiety. She said she had laid awake and questioned and went over the surgery again to see if there was something she could have done differently. She always came back to that what she did in surgery was the best at that time. I trust that she has always done what was best for Piper. I know that some people have questioned if we are with the right doctor to have this happen a second time. People questioned whether we should get a second opinion or not. I know that when we first met the doctor for the first time, I had wanted to see another doctor in the practice. His wait was pretty long and we wanted her to be evaluated sooner than later. I prayed that God would give me a sign, peace and comfort that she would be the doctor to perform the surgery. When we were there for the first time, she spent so much time with me and answered all of my questions. I never felt rushed or that I couldn't ask any questions. At the end, Piper went up to her and wanted her to pick her up. That was what did it for me. I knew she was the one. Piper didn't go up to anyone like that. The more time I spend with her, the more I know she is the right doctor. Today proved that again.
When we were finished talking about Piper, she looked at me and said I just need to ask you. You have 3 beautiful girls, what made you adopt? I see parents who adopt who cannot have children, or older parents who decide to adopt later but I am curious why did you do it. This was a moment I feel God gave me. I was able to tell her our story and how God led us to adopt. She just looked at me and said she is a very special little girl. We are truly blessed.
Well, they took her off of the IV fluids today to see if she would drink or eat on her own. She still has no interest in doing either. We have tried baby food pouches, ice cream, popsicles, yogurt, milk, chocolate milk, formula etc. She doesn't want any of it. So they will put her back on IV fluids again after dinner time. We will be staying overnight again. Please pray for her comfort and that she would drink some on her own. You will see in the pictures that she is taking some sips from her cup. It wasn't enough to let us go home though. She will get there. Thank you for your prayers!
My little one is so swollen today. I feel terrible that she feels the way she does. She had no clue what was coming to her when we drove to the hospital yesterday. We have been doing a lot of cuddling and snuggling. I love this part. She still does not want to drink or eat. I can understand when I see her. She looks like she is just so uncomfortable. Poor baby. Please pray for her comfort and that she would be able to drink. She is still on IV fluids. Tomorrow they will take her off of the IV's and see if she will drink a little on her own. We did manage to take her for a wagon ride. This was a distraction for a little until she was due for meds. She really fights taking the medicine from the nurses. It is certainly a task day or night. We have to really hold her down to get them in her.
Piper had her 2nd palate surgery June 5th. I was so scared and nervous only because we had just did this all in January. I was so scared because I knew what it was like the first time and seeing my baby girl come out of surgery was really hard to see. My mother in law came with to be with me while Daddy worked. He was going to leave later and come down and spend the night and the next day with us. That was definitely what I needed this time around. I was so thankful for my mother in law's company that day. It helped having someone there to talk to and be with during our wait. We had to get to the hospital by 6 AM. I woke up, picked up Piper out of her crib, and along with her binky and blanket, I carried her to the car. We arrived at the hospital and I got her all ready in her little gown. We met and talked to the doctors. They said that the surgery was going to be 2 1/2 hours. When it was all said and done it was 4. We got our hourly updates and she was doing well each time. When it was time for us to be able to go back, I all of the sudden was not feeling well. I started getting really nervous about seeing her afterwards and trying to do it all over again. So my mother in law asked for a snack. I had to munch because I felt like I was going to pass out. Once I ate I felt better and then took a few deep breaths and went back. I tried to prepare my mother in law for what she was going to see. We went in and my little girl was definitely having a hard time. The nurse told me that she had attempted to rip out her IV a few times and she was so strong it took 3 nurses to hold her down. When they handed her to me, she immediately calmed down. They said it was the calmest that they had seen her. That just melted my heart. She knows her mama!!! She just laid in my arms and she allowed herself to rest. After a bit, she woke a little and we offered her some popsicle. She loved the popsicle. I think she had 3 in the recovery room. I was impressed. This was definitely improvement from the last time.
The doctor ended up repairing the hole in the top of her mouth, which was the unrepaired side. She took all of the tissue she needed from her cheek and used alloderm which is an artificial layer sandwiched between her tissue. She was so swollen when I went back to the recovery room. It just broke my heart to see her like that but I know every bit of it is a gift. That is what my mother in law kept saying. She is right. She is here with us and getting the care she needs. Please pray for her healing and that she would not be in a lot of pain. God definitely is giving me strength, more than I thought I had. Somehow I just keep going.