(This is an extra, extra long post, so grab some popcorn and a blanket)
Autumn has a beautiful new face, but to get that face she underwent some pretty intensive surgery on June 28, 2013. She had an Anterior Cranial Vault Reconstruction with Orbital Bar Advancement. In none doctor terms, She had her forehead reshaped and her orbital ridge (top of the eye socket) moved forward. I want to write about my experience with my daughter's surgery, first for my own record and secondly, to help anyone else who has to go through something like this, have some info and comfort on the situation.
On June 27, 2013 We were told that we would have to have miss tiny fast from midnight on for her surgery at 7:30 am at Primaries Children Medical Center. Yikes! I had done the fasting thing before with miss A and it was a disaster! Lots of tears were shed on both parts to say the least. Nate and my Father-in Law Jeff gave missy a blessing that night, and we all said countless prayers that she would be able to handle the fast, surgery and recovery the best she could. We put Autumn to bed at 8:30 pm and Nate and I packed and talked till 11:45 pm so we could wake her and feed her for the last time till after surgery. She slept through the whole feeding but sucked down her whole bottle. I set her back in her crib at 12:10 am and went to sleep. Our alarm went off at 4 am. we got ready, expecting missy to wake at any moment. At 5:00 am we loaded up the car, including our sound asleep baby!
We arrived at 6:00 am for check-in at Primaries and Miss A was still asleep, this was a miracle! At 6:30 am we were called back to do the pre-surgery vitals on Autumn.
We woke her to find she was as happy as a clam. They took her Blood Pressure, Temp, Weight, and measured her head.
They talked to us about anesthesia and what they were going to do during surgery. Missy was a super star during all of it. We went to the Pre-OP waiting room at 7:00 am and that's when Autumn started to get alittle fussy.
We were able to entertain her by passing her around from parent to grandparent to parent again until 7:30 am when the Anesthesiologist took her back.
My heart start to pound when he took her from me. I went into flight or fight mode. I wanted to punch him in the face for taking my baby! But thankfully my Husband was there to take my hand and lead me to the waiting room, where we would be for the next 6 hours.
Those 6 hours I did everything I could to keep my mind occupied. I played crosswords, word searches, talked, ate, played on my phone, read a book. I thought I did pretty good. They called me every hour to update me on Autumn's Status. Every time they would say, "Parent of Autumn wanted on the Phone" I would fly off my seat and run to the phone! She was stable as could be every time. I didn't realize how the stress was effecting me until they called at 1:00 and said they were just stitching her up. They were going to transport her to the PICU (Pediatric Intensive Care Unit) do a report, hook her up to all the monitors and then we could see her. That's when I noticed my whole body was aching from head to toe. They next told me, Dr. Warnock would come talked to us when he was done to tell us how the surgery went. Waiting that 20 minutes for the Doctor took FOREVER! But once we sat down with him my anxiety lessened. He said the surgery went off without a hitch. She lost one unit of blood, which was what they planned for. Her vitals were stable the whole time, and her skull was easier to re-shape than he thought. He did let us know that he used some Cadaver bone to fill in around some of the spots in her skull. CADAVER!!! Wowzer, ok... Well if it does the job, I guess that's fine (but alittle creepy). Also he informed us that the metal they put in her skull to keep the bones together actually melts away after a year or so. CRAZY!!! Metal, melting?? Thank goodness for smarty pants Doctors that know what they are doing!!! After we were done talking to our Super Hero Plastic Surgeon of a Doctor, We got to go see Missy! I basically ran to the PICU, and had to wait for the rest of the family to catch up. When I saw my little miss tiny all bandaged up and hooked to a million monitors, tears welled up in my eyes.
She looked extra tiny in that hospital bed. I was alittle surprised just how different she looked already. She was already swelling, and she was super pale, from all the blood loss, but I could still see my little Autumn in there.
The nurses filled us in on what to expect the next few hours. Autumn would be confused coming out of anesthesia, so she might be fussy. Also she will have a major headache, (well of course), she will be sleepy and might get a fever. Well Missy DID NOT LIKE WAKING UP FROM ANESTHESIA. She just cried and cried. and she definitely wasn't sleepy. She cried so much that they had to put her on oxygen. They gave her Morphine for the pain, but that wasn't helping. After about 15 minutes of giving it, she would start crying again. She also had a fever, so they gave her Tylenol, but that wasn't helping either. The more she would cry, the higher her fever would get. Then she started scratching at her face, which would make her cry because her face was so tender. We couldn't keep her hands off her face. We had to put little splint things on her arms and she did not like that!
Finally after 6 hours of soothing, rocking, holding, feeding, and giving more and more morphine, I asked the nurse if maybe she could be having a reaction to the some of the meds. YUP! That was the problem, Missy apparently is allergic to Morphine. As soon as we figured that out, They gave her some Benedryl for the itching and Oxycodone for the pain, and within 10 minutes we had ourselves one happy sleepy camper! Her fever resolved it self after she calmed down and she fell asleep at 9 pm and slept till 4:30 am. I fed her from 4:30-5:00 am, they did some vitals and she continued to sleep till 8:00 am. I was up every two hours with the nurses however, asking questions,checking her vitals, and making sure Missy was still doing alright. I know the nurses know what they are doing, but she is my baby, how am I supposed to sleep, especially on a couch that was barely meant for one person, let alone me and my 6 foot husband.
We were up at 7 am on Saturday for the Nurses Shift change and Report. We met with the ICU team and they said they thought she was stable enough to transfer out of the PICU to the Infant Medical Care Unit (IMCU) a floor up from the PICU. After all the doctors did their rounds, we got the okay to transfer Missy to the IMCU around noon. It was such a relief! We got our own room, Autumn could have more than 2 visitors in her room at a time, there was a BATHROOM!, but still just a couch for a bed. Autumn got her Central Line taken out, her Artery line in her wrist removed, and her Catheter taken out, leaving her with just her two IV's in her foot. Autumn was doing really good, she was swelling a lot, but that was expected. Her nurses and doctors said by the end of the day her eyes would be swollen shut (which never happened).
She also was struggling to keep her medicine down, she threw up almost every time they gave her her pain meds. She ended up only being on them for two and a half days (SUPER STAR). Besides the barfing, she was happy as could be. She started smiling, talking, playing with toys and eating more often. It was our 6 year anniversary that day but we weren't planning on doing anything.
However, since Autumn was doing so well and Nate's parents were there watching Autumn, we felt comfortable going out for a quick date. We went out to Sushi a few miles away. We decompressed for a few hours and then hurried back to our little miss. When we got back, Autumn was just chatting away with her grandparents. I was amazed at how well she was doing.
I knew it was because of all the prayers and support she was getting. Throughout our stay at the hospital we received countless texts, and messages about how people were praying for her and that they put her name in the temple. Our little families name was placed in temples around the World. From London, to Houston, to several temples in Utah. It still amazes me how much people care about my family.
The rest of the night went great till around 10 pm. Out of nowhere I just started vomiting. For the next 6 hours I threw up every 20 minutes. It was unreal how violently I was vomiting. I was so sick that if I even lifted my head to check on Autumn I would have to throw up. I felt so helpless. Autumn would start crying, and instead of going to her side and soothing her, I had to wake up Nate to tend to her.
I was more frustrated that I was unable to comfort Autumn, then that I was throwing up. Thankfully my dad. Dr. Juchau came to my rescue Sunday morning and brought me some Zofran. All of Sunday was a blur. I slept for most of it. I was so dehydrated and tired that I don't really remember that day. Some positive things about Sunday were, Autumn was back to taking her normal 3 naps a day. Her swelling was at it's peak, and her eyes never did swell shut. She also was only taking pain meds every 8 hours, and went completely off Oxycodone
Sunday afternoon. She also had one of the two IV's removed. The one big bummer of the Sunday night was since she was feeling so well, she was wiggling so much that she ripped her last IV out. That was around 11pm on Sunday, so I was feeling well enough to stand. They had to call the IV team to come put a new one in. Let me tell you, that SUCKED! The first time they put all her IV's in she was under anesthesia. This time she was very much awake. They had to try 5 times! Poor thing was screaming and crying, and staring at me like,
WHAT THE HECK MOM!
They finally got it in and about 4 hours later she ripped it out again. By this time it was early Monday morning and the Doctors were thinking that they were going to discharge her that afternoon, so they decided they didn't need to replace it. THANK GOODNESS!
By Monday Morning, Autumns swelling was already starting to go down. She was off antibotics, pain meds, had all her IV's out and just needed her dressings and drain removed. Dr. Warnock said that he would come remove her drain around noon, and to give her a dose of Oxycodone at eleven because it was going to hurt when he pulled it out. Nate and I played with Autumn, showered and took a nap till Dr. Warnock came. When he got to our room he took off the dressings and shown us Autumn's new skull. I was shocked! It was beautiful! He was a miracle worker. I was pretty surprised too. She look SO different! I was amazed at just how different she looked.
He told us that the swelling would take about a month for most of it to go down, but after a week we could see roughly how she would look. He also told us as the swelling went down, her skull would look more and more bumpy.
This would be caused by the nuts and screws he placed in the skull and the gaps he left. As she grows her own bone will fill in and the metal will melt away, smoothing out her skull. Next Dr. Warnock had to remove the drain that was in place to remove the blood and fluid from doing the surgery. He informed us that even though Autumn received pain meds, pulling the drain was going to hurt really really bad for about 30 seconds, and that he was sorry, but this was usually the most painful part of the whole process. Nate decided that it would be too much for him, so he left, leaving me to hold Autumn's hand. **Side note ( I have never heard my daughter scream this hard in her 6 months of life) ** When he pulled that drain, Autumn turn the darkest purple I have ever seen and had the most blood curtly scream I had ever heard. Thankfully after a minute or so she calmed down, but that was one LONG minute!!! After the drain was out and Autumn and I were composed, the nurse gave her a bath. She told us that our Doc said she was good to go! We packed up and received all our discharge instructions. Give her Tylenol every 4-6 hours, put Bacitracin on her incision twice a day and meet with Dr. Warnock in 10 days. Pretty easy!
Since we have been home, Autumn has been doing amazing! She has struggled to keep tylenol down, so we have had to get some suppositories for her. I think taking those gross pain meds by mouth every 4 hours Has caused her to throw up every oral medication. She also has been getting up every 2 hours at night, but that was expected. I am sure it gets uncomfortable laying in one spot for too long. Besides the vomiting and sleeping, I would say Missy is Super Human! She has recovered so well. Hardly any bruising, she hasn't decline developmentally, which we were told would happen. Plus she seems to be smiling more than she did before surgery. I think Nate and I have probably had a harder time then her. It just amazes me how resilient babies are. Especially when they have the support that she has had. Little miss tiny has sure gone through a lot in her 6 months of life. Being born 7 weeks early, staying in the NICU for 6 weeks, losing weight due to reflux, have major reconstructive surgery on her skull. WHAT A TROOPER I have! This girl has had her fair share of hospital time and physical problems. I am so thankful that through all of it we have had the Lord on our side. I don't think I would have been able to get through any of this without the knowledge that I have someone bigger than myself to lean on, that the Lord knows who I am. He knows the anxiety, pain, frustration, sadness, and fear that I feel. He has felt it Himself and knows EXACTLY what I need to get through the struggles that I have. I am also so grateful for the friends and family in my life. I have the best support group! I feel that through the loss of our angel baby, our struggle with infertility, my parents divorce, and everything we have been through with Autumn, I have the most unique, real and amazing friends. What a blessing all of these trials have been. I just hope that we can be done with the hospital for a while. I am ready for a boring, everyday life these days!