We had to be at the hospital at 5:30am on Friday the 16th of January. I ended up waking up at 3:40am because there was so much I felt like I had to do still, plus its hard to sleep when your nervous. We had to be there so early because Eli had to give some blood to do a blood type/cross. We ended up waiting in a pre-op room until just before 8:30am when they took him back for surgery. Giving him to the nurse to take him back was the hardest thing I have ever done and I feel like my heart went right with him into the O.R. After that Brad and I had to wait in a huge waiting room until the surgery was completed.
We were lucky because one of the nurses that I have been seeing through the craniofacial clinic's daughter had this surgery. Her name is Jennifer and she was absolutely amazing. She gave me her number and sent me text messages right from the operating room. The first doctor that came out to see us in the waiting room was the neurosurgeon she came out at around 11:15am and she said everything is going great and gave us a lock of hair that they had to shave. She said that he did need a blood transfusion but he is taking it well. Then around an hour or so later the craniofacial surgeon came out and said the operation was done and went really well. All that we were waiting on was waiting for him to wake up and be put in a room. He said maybe another hour or so until we got to see our little man. At around 2:15-2:30 we finally got to see Eli. They moved him to a room in the pediatric intensive care unit. It was so hard to see him hooked up to everything and have that bandage on his head. I felt completely helpless and just wanted my happy baby boy back.
I decided to show you a modest picture of what he looked like. He was on the ventilator still but he also had an arterial like in his right arm, an IV in each foot, and he had a bulb coming out of his head that was collecting what looked like blood. When I first saw him my heart just sank. It was the worst feeling that he had to go through all of this and there was nothing I could do to help him. A doctor came in and said that his lungs in an X-ray looked like they had either fluid or mucus in them and he would be on the ventilator until the next day. I didn't like that at all but understood why they were doing that. Better safe then sorry. At around 6:00pm another doctor came in and started to mess around with his ventilator. He turned it off and said that Eli was breathing completely on his own! Then he told us that they were taking out the tube! They had us leave the room because I guess the first couple breaths are extremely scary then we were allowed to come back in. He is such a strong little man and I am so proud of him and how well he did going through all of this.
At 8pm I got to hold my little man! It was a little bit bittersweet though because even though I loved to hold him he had so many tubes that I had to be careful of. I didn't want to hurt him or pull out anything so I ended up breastfeeding him and then putting him back in bed and felt really uncomfortable holding him. During the night he did really good. He slept for around 3 hours at a time then woke up. We ended up bottle feeding him my breastmilk because it was really hard for me to hold him. He was able to open up one eye but the other one swelled up a little bit.
Little by little he started to swell up. He was able to take out his arterial line and it was a lot easier to hold him. We were able to have our girls visit Bubby and it was good for them to see him. Little Emelia wanted to hold Eli's hand and it was hard for Bridgette to see Eli like that. She ended up telling my mother in law later that she missed Eli's old face. My best friend Ashley and her Husband Trent came and they both love our children so much. It was really hard for Ashley to see him like that. They ended up taking the girls to go play in an indoor garden in the Children Hospital part of Beaumont. I am very lucky to have a friend like Ashley. That night we were doing so well that we were able to move to the Pediatric ward. There is a non-profit organization that makes stuffed dolls for kids going into the hospital. They are called The Shadow Buddies Foundation and are absolutely wonderful. They sent Eli a doll and are helping me with dolls for my care packages to local hospitals. We kept that doll by him a lot in both the PICU and in the pediatric ward.
By the third morning eyes were completely swelled. He was absolutely miserable. We were giving him pain medication by mouth and he absolutely hated the taste of it. I did get my husband to hold him. Brad was scared of holding him because he didn't want to hurt him. It was like he was a newborn again and every little movement we were terrified of doing something wrong. The doctors all came in and told us that we would see the peek of swelling today then it would slowly start going down. It was really hard to see him with two black eyes and his head really swollen. That night we had a wonderful lady named Debi from our Church whose son had to have multiple brain surgeries come and visit us. She brought us a wondeful gift from our Church for Eli and we prayed over him. We are so blessed to have the support from our Church that we do.
My husband took this picture that night. I was so exhausted it wasn't even funny. Don't judge!
By Monday he was able to open his eyes a crack and he had gotten his dressing off and "brain goop" tube out. That was terrifying. One second the surgeon is talking to us and taking off the bandage and the next he is pulling out the tube! His cut looked pretty scary too! It was zig-zagged and rugged. I know this sounds horrible but he reminded me of Frankenstein. My husband and I joked that now he has a life-long costume! This day he was a million times more happy and playful! Just by being able to open his eyes! The girls and my mother in law came to visit. Bridgette had the day off of school. We were able to eat lunch with them and hang out with just us and the girls while Meme got to spend time with little man. By the afternoon Eli was able to see more and more. He sat up and played for the first time since the surgery! He wasn't 100% yet but we were starting to get our happy little boy back!
On Tuesday Eli was opening his eyes even more! He was so happy and alert! It was quite a blessing! He got to sit up and watch ESPN with daddy and then he got to play with his new toy! In the morning all the doctors came in and said he was doing great! They wanted to send us home but the day before Eli didn't drink much breast milk so they wanted to make sure he was eating better. We almost had to put and IV in but my husband and I were determined not to. Our friends Chris and Erica from our church came and visited us when Brad went to go get Bridgette from school. Chris is the childrens pastor at our church and we have all became friends from our growth group. In the afternoon one of the Nurse Practitioners out of the neurosurgeon team came in and was slightly concerned with his right side. He told us that it is possible that there might have been a small cut in the dura mater and he might be leaking cerebral spinal fluid. They wanted to keep an eye on him and it scared us quite a bit. They told us it could be just a collection of blood and fluid too. It was so weird feeling on that side of his face. It felt almost like a water balloon. They told us to watch and see if it got worse or if the fluid went down. If it got worse more than likely there was a small cut in the dura mater, if not then it is just fluid and nothing to worry about. I got on my facebook and asked my family and friends to pray for him.
On Wednesday we got up and the fluid on the side of his face went down! Praise God! We were so happy and then the doctors came in and told us that he was doing amazing and that it wasn't cerebral spinal fluid. They were ready to send us home! It took a while to be able to get everything around to go home but we were able to go around and thank many doctors and nurses that took care of us during our stay. Beaumont hospital was absolutely wonderful to us and we were so blessed by all of the staff. We got home around 1 because the roads were bad and we felt like we were driving with a newborn. We were all happy to be home!
We still have a lot of healing to do. We have a lot of doctor appointments still in the next month but we are happy to be on the other side. Now my goals are helping spread awareness and help out other families dealing with this. If you have a second go to Caring for Cranio's facebook page and see if there is a way you can help out!
Peace and Love,
Hi Jessica,
ReplyDeleteKathy gave me the link to your blog. I just want you to know that we have been praying for Eli and all of you for the last few months, but especially lately through the surgery and following. Our whole church (well it is small... But we pray big!) is praying for Eli and his recovery. I am praying for you and Brad, too, because it is a really difficult thing to let people do things to your baby, even if it is good for him.
I think you have been very brave. I am glad you have written things down. when you hit patches where it is very difficult, you can look back and see how God helped you now.
Please say Hi to Brad for me. We love you all, even if we don't know you yet!
Sandy and Jim in England
and Sam, too. He has been telling me the updates you put on Facebook.
Thank you Aunt Sandy! We appreciate all of the prayers and we truly believe God has listened! Eli is healing great and we are so blessed. I decided to start this blog when my thoughts were all too jumbled and I couldn't think straight. It has helped me have a place where I can look at his journey and see how far we have come. I will tell Brad hi and I hope to meet you guys all soon! It was nice meeting Sam over the summer and I am glad that he has been able to tell you about the updates! We love you guys too!
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