We got to Colton's appointment with his actual doctor, and things were not good, the hole had grown, and I hadn't known it because the serrous fluid was covering it up. She thought he must have fallen on furniture's edges or something, but he didn't. The risk of infection was pretty high, and she was worried if she left the expander exposed, that both of the expanders could become compromised. They decided to do an expansion that day (of just the bottom) and then for us to come back the 22nd for another expanasion of the bottom. Then the 28th we would come for one last expansion and the pre-op appointments at Shand's. Then they would do surgery on the 31st to remove both of the expanders, and to excise as much of the hairy nevus as was possible with what new skin they had grown so far. Then after he healed we were most likely going to have to repeat the process with just one expander. I was crying in the office, I felt so terrible for Colton, he doesn't deserve to have to go through anything like this, extra surgeries, more pain, and I felt like it was my fault for moving somewhere with hardwood floors (although it was the only place we could afford, I didn't really have an option). The doctor was nice, assuring me it was not my fault and that I was doing a good job with the situation.
January 3rd, 2013
Catching Everyone Up!
December 7th, 2012
December 6th, 2012
December 5th, 2012
We made it back to my Aunts to get Nolan, the first time I'd seen him in a week and of course I was scheduled to work that night so saw him for perhaps 45 minutes before I had to leave both the boys with their Dada. That first night with all of us in the same room together again was not fun, Colton went from sleeping through the night to waking up for 2 hours, I was tired lol, but happy Nolan was home.
Colton's expanders are kind of shocking to people when they see them for the first time. At first, it really just seems as if he has the one in his scalp because it appears so large(having no space to sit between the skin and scalp) while the cheek one was at first pretty well concealed in that pocket. Nolan did well with Colton once we explained that brother was hurt and had a boo boo, and now doesn't even seem to notice it.n Thorin still has a difficult time, he thinks the expander on his head looks like a tumor, but its not & Colton is so handsome! He is such a happy baby, nothing seems to phase him. The two weeks until the first expansion went well, the boys played (Colton driving Nolan crazy chasing him lol) and we did some outings with Colton for the first time since the surgery.
Colton slept through the night the whole time Nolan was out of town! We didn't wake up until about 6 AM to Colton having decimated his head dressing from moving around so much in his sleep it was pretty much completely off which freaked me out, I was worried he could have opened the incision. Since no one was up I was facing changing the dressing by myself, which scared me, he had screamed so much the other times, but I kept playing the giraffe, and he did much better this time. I did a better job on this wrap (see the picture to the left), having figured out that the neck needed to be much tighter as the one from the day prior kept moving up towards his mouth, I still didn't get the back right on this try though, that would be for my next wrap lol!
As you can see his eye was even more swollen, and I was starting to worry again, but I decided to wait it out and see if it got better later that day, as I figured some facial sweeling was probably fairly normal, it got worse before it got better but it did improve later on. We just hung out all day Colton started to get a little more mobile, playing some, and crawling around, which made me nervous at first worrying about him falling and bumping his head, but he had to be able to play like normal!
The other problem we cam across was that during the night while we had slept, Colton's drainage tube had started to leak some, so I wrapped some guaze around it and taped it up so that the liquid wouldn't get on his dressing or anything else. So I was never positive if my output measurements were completely accurate after that, it was never a lot of leakage though so it didn't pose too much of a problem.
Drainage Tube Output 11/23
7:36 AM = .5 mL
11:00 AM = .25 mL
8:40 PM = 1 mL
The next two days were mostly more of the same, we took it easy at home and caught up on some much needed rest while Colton got more and more active. His eye was completely normal by the 24th, and when we woke up on the 24th to him having messed up his dressing again I focused a lot more on making sure the back was wrapped up well, and after that the dressings stayed pretty stable, which was a good thing because I was running out of the nonstick ointment pads.
Drainage Tube Output 11/24
8:40 AM = 2 mL
11:15 AM = 2 mL
5:30 PM = .5 mL
Drainage Tube Output 11/25
6:30 AM = 2.5 mL
5:00 PM = 2.25 mL
Starting the afternoon of the 25th I started only giving him Tylenol every 5-6 hours as he was tolerating the pain well, although he stayed with the Motrin every 6 to combat inflammation, and of course his antibiotic.
November 22nd, 2012
As soon as Colton was fed and happy we headed to my mom's house for Thanksgiving lunch lol (have to fit in two families' celebrations). We got there in time to watch the parade with Grandma and Grandpa Matt, and Colton got to get into his walker for the first time (I keep it at my mom's because she has hardwood floors for him to roll around) and he did great in it!! He actually managed to move forwards on the first try, Nolan always went backwards lol. We went a little untraditional as my mom knew I'd be having a big Thanksgiving dinner later, we had ham and macaroni and cheese and apple pie and lots of rolls (my family and I are bread and butter piggies, Nolan already takes after us he LOVES bread!). Colton napped for the most part during lunch, which was nice, I actually got to sit and eat with both hands!! That NEVER happens lol. My family keeps worrying when they see me because I've been losing a good amount of weight (the unhealthy way, from not having time to really make myself food).
Once I digested and we relaxed and watched a little football with Grandpa, we headed to pick up Uncle Nick (one of Thorin's brothers) for dinner, and headed back to Nana's house. I took Colton upstairs for us to get a little nap until dinner time at 5, and then we headed downstairs to mingle. This was the opposite of my mom's with tons of family and kids, everyone getting to see Colton for the first time, of course still with the head dressing on. His Auntie Jessica (Thorin's cuz) held him for a while and we had to explain to her twins (who had horrified expressions on their faces) that he had had to have some surgery to fix his head, and the drainage tube freaked people out because they thought it was blood (which it is partially). Thorin was super late, called to say to hold dinner (which we didn't luckily lol and then didn't show for like an hour because he was working. But we all hung out and ate ( I mostly pigged out on Thorin's Aunt Theresa's corn bread casserole because I'm addicted to that stuff!). By the time Thorin got there Colton was super tired so I took him upstairs and managed to get him to sleep, then went back downstairs to sit with Thorin for a while, we talked to his cousin for a bit then went outside, after a little bit I thought I heard Colton screaming and ran inside poor little man had apparently been crying for like 5 minutes because everyone thought I was still in there with him, I felt so bad for my little traumatized man (yes I know thats not a very long time but he just had surgery he needs extra love! I settled back down with him and we got some rest.
Colton's drainage tube was back to normal this day, although it went through phases of slowing down a few times.
Just to give an idea of what his was like so you know what to kind of output to expect:
1:35 PM = 1.0 mL
5:00 PM = 2.0 mL
8:30 PM = .2.5 mL
November 21st, 2012
Almost directly after this the doctors came in to change Colton's head dressing, meaning the first time we got to see what was underneath. Thorin and I were shocked by how large the expander in Colton's scalp looked, we hadn't really thought about it but obviously there is no space in between the skin and the skull for the balloon to sit in so it is very prominent, even when not filled with anything. The expander in his cheek is much less noticeable because of all the space for it to be concealed in. I dealt with this better than Thorin, who still has a very difficult time coping with how that scalp one looks, largely (I think) because he wasn't as aware as I was before the surgery of what to expect. I watched closely because I was really freaked out about having to change that dressing on my own at home, watching did not make me feel any easier about it.
Because he threw up they wanted us to stay some extra time before we went home, so we were unsure what time we would be discharged. To be honest, with the surgery, as well as when I was in the hospital after having both boys, I didn't want to go home. It always scares the crap out of me to leave where there are tons of people who know way more than me to help in case anything goes wrong. I was quite happy we got some extra time in the hospital to get used to everything. We talked to Dr. Lentz again, and she went over instructions to record anything we emptied from the drainage tube, not to give him full baths until the incision healed, and to change out the head dressing as necessary. She also set up an appointment for the following Monday, November 26th, to hopefully remove the drainage tube. They gave me a very large bag of gauze (some bulky some not for later days), tape, nonstick pads, and a ton of drainage tubes. The nurse let me change the drainage tube to give me practice, it wasn't difficult at all just pulling off the old one and snapping a new one onto the needle. When we were finally discharged, around 12:30 pm, I'll be honest, I really wanted to just stay in Gainesville another night, versus attempting to make the drive with a in pain, upset baby, but Thorin had to get back to work so we headed out. Colton tore his dressing up as soon as he woke up and started crying, by the time we amde it to a rest area it was pretty bad looking, I pinned his arms with a blanket but we had to make do, I fed him some until he fell asleep, and he made it alright to Tallahassee.
We had to stop to pick up some Tylenol for him to take every four hours, Motrin to take every 8 and get his antibiotic filled to take every 6 hours. This was a way bigger hassle than it should have been, I had run in, figuring it wouldn't take long to drop off the prescription. However, first the pharmacists could not figure out which doctor had written the prescription as apparently the hospital doctor had a very common name. Then, once they sorted that out, they couldn't verify Colton's insurance (he had never had to have a prescription filled before so this was our first time going through the process), and I had to wait for them to call the company. Colton had woken up and started screaming so Thorin yelled for me across the store and I had to go tell him I had to wait, so he brought Colton in, which freaked me out (pharmacy...germs). We made it home, and Thorin helped me get everything inside. His mom got to see Colton for the first time and we visited for a minute before heading upstairs. Starting at 5:00 pm he got that antibiotic (which Thorin and I both agree is the foulest smelling stuff in the planet, the bog of eternal stench from the Labryinth?? I think this would compete). I used that new journal to keep track of all of Colton's medicines and rigged his dressing with bandage tape. I started to worry because there was absolutely nothing in his drainage tube. (which you'll remember I had changed for the first time), he had always filled it halfway pretty quick before that, I was worried I had done it wrong. When it still hadnt filled up by the morning I started to pseudo freak, got in touch with the doctor at the hospital, and he basically said it had either dried up already (I doubted it) or it was clogged in which case there was really nothing to do. I was kind of like ok?? So where will all that fluid be going if it cant get out the tube? This sounded serious to me but I trusted his judgement. Colton and I had a pretty restful night together, I mittened him so he couldnt tear at his dressings, and we cuddled and did some (mild) playtime.
Poor Colton couldn't eat anything after midnight, and we didn't even need to be at Shands until 6 AM. His schedule being messed up throughout the day made it hard for him to get to sleep that night, didn't pass out until around 10:00 pm. At 2:30 AM he woke up hungry and proceeded to cry until around 3:30 AM as I tried to get him back to sleep, without food. Finally I gave up and we played for another hour, he finally drifted to sleep at around 4:50AM staring at the TV. I knew it was probably a bad idea for me to go to sleep when we needed to leave at 5:40AM to get to the hospital, but I was completely exhausted.
No alarms woke us up, but magically I woke up at 5:45 AM and freaked, we were super late! Waking up Thorin is never easy, by the time we were both ready to go it was 6:15AM. I called the hospital to let them know we would be late, it was close to 6:30AM when we finally reached the Ambulatory Surgical Check-In. We had a very brief wait before we were taken to the pre-op area. And the low of people started, we had to answer all of the health and allergy questions again, speak to the anasthesiologist, the RN assigned to Colton for the surgery,who was sweet and let him keep her sthethescope (they have a new one for each patient) to teethe on, some members of the surgical tema, some more nurses, and finally Dr. Lentz.
For the most part, they were asking the same questions we had already answered, and reiterating what the procedure would be. Dr. Lentz said it would take anywhere between 2 to 2.5 hours, and when he was out they would call down to the waiting room to let us know and we could head to the recovery room. They also said they would call with updates throughout surgery. As 8AM approached, the time they would take our baby back, we got Colton in his little robe and dada started to rock him to sleep, just as Colton dozed off, the RN came to get him. She took him straight from Thorin so hopefully he wouldn't get upset about being taken away (not that he necessarily would have, he loves everyone). I managed to sneak a kiss on his head bu didn't get to hold him again before they took him back.
As Thorin and I headed out to the waiting room, all my fears atarted rushing over me about the odds of something happening, and that I hadn't gotten to hold him, combined with my guilt over the fact that I made this choice, if something went wrong, it would be my fault. I broke down in tears and THorin held me tight next to the elevator. He is always the best at comforting me with anything like this. A nurse asked if they had taken our baby back and how old he was, and shared how her 6 month old had had surgery the month prior and done great. We got off the elevator, sat in the nearest chairs, and held hands and talked about how we were feeling. Thorin wasn't worried about anything happening, just upset about how much Colton had to go through when he was so little and innocent and sweet. He told me no matter what nothing was my fault, which I'll admit, I had kind of thought if anything did go wrong he would definitely blame me. We sat for a little bit until we started to calm ourselves a bit, then moved to the waiting room, so that if anything came up they could reach us.
We were both exhausted and knew we should eat, but didn't feel up to it for an hour or so. I went to the gift shop in search of some cokes and instead found Colton a super cute, snuggly monkey. Finally we meandered to the food court, wasted a little bit of time, and went back to the waiting room. At about 10:30AM (when we originally told Colton would be out by) I finally managed to doze off on Thorin for a few minutes. There were never any calls with updates. At about 11:15AM we got the call that he had made it safely out of surgery & was sleeping, but we could head to recovery to be with him.
We got to recovery, to be greeted by Dr. Lentz who went over the basics of how he had done. She said the surgery had gone well, and that they had sent some of the mole of to the lab to be tested for malignancy. Although they had put two expanders in, she told us there was a chance they might need to insert a third at a later date. She also informed us that when they did the final surgery later on there was almost no chance that they would not have to damage the nerve that controls his ability to raise that right eyebrow, although she said there was a chance that they might be able to "skeletonize" and save it (whatever skeletonizing a nerve means). We had to wash our hands and joined the crowd of nurses around Mr. Colton, who was sleeping. For the first time we got to see our sweet little man with his large head dressing and drainage tube on. We mainly just watched him sleep and felt bad for him as nurses explained how well he had done and that he was on pain medicine. After a little while he woke up crying and I got to pick him up and hold him, which was rather frightening as I was worried about hurting his face, not to mention the IV he had and all the instruments monitoring his vitals made it very awkward to maneuver him. I breastfed him until he fell back asleep, and continued to hold him until it was time to transfer to our room, Thorin was jealous, but breastfeeding mama wins lol.
Colton was wheeled in his hospital crib to the first pediactric unit and shown to our room, which wasn't usually private but we lucked out and didn't have anyone to share. The security was interesting as they had to phone for an elevator with an employee who wouldnt take us anywhere until she verified Colton's name and destination. I put his monkey in with him while he slept as soon as we got to the room, and then were introduced to the floor nurses, all of whom were very sweet and helpful. We got a ton of information about our time there, including their number to call in case of a drastic change in Colton's condition (This is important lol, you will see why). The hospital loaned me one of their stronger breast pumps, and Thorin went to get us some lunch at the cafeteria, while I set up our pull out chair with sheets, pumped milk, and read the information we had been given (hes slow lol). Shands has one of the best gyros ever by the way! I told Thorin the overview of what I had read, including that emergency number.
Colton woke up just long enough to eat again and get laid back down, he woke up at tops 3 times to eat that whole night, immediately dozing back off. An arts and crafts lady came by with a bunch of different stuff for kids or parents, I took a little journal (with which I recorded everything as it happened so I would have it for the blog) and Thorin took a drawing book. We watched Big Bang Theory (which Thorin had never watched and is now addicted to). Nurses had to come in every hour for the first four hours to 1) Take Colton's vitals, which were always great and 2) To empty out Colton's drainage tube which I guess was a unique type and had to be changed out every time it got to 1/2 full to allow full suction. It seemed like it was a lot coming out, but we were assured that it was actually a low amount, just a small tube. Finally we both settled down enough to sleep some.
We made it early to Gainesville, Thorin's FSU rivalry awakening this week before the UF vs.FSU game, he kept Seminole chopping everyone. As we headed into Dr. Lentz's office, for our 1:15pm appointment, a cute old man offered to trade us some goats for our baby lol, we joked that they do both put everything in their mouths. In the office, we got taken right back, and once again all of the nurses and doctors were great with Colton. This was the first time Thorin had gotten to be at one of these specialist appointments, work had always interfered before. Once it was determined that they would proceed with the surgery as planned, he had a lot of questions and some of the answers were things I had not heard before. I knew there would be scarring, relatively bad, but I hadn't thought much about the odds of nerve damage to his face, etc. Thorin was noticeably upset by the idea of scarring, the facial nerve damage kept bothering me.
We had a little break until his pre-anasthesia appointment at 4:30pm at Shands and went to treat ourselves to sushi, Colton tried some edamame for the first time and loved it (his first actual people food not cereal, fruits, veg, etc.). After, we found our way to Shands, had a good talk with two ladies in the waiting room, and again got approved to go on with the surgery here as well as Colton's heart and lungs sounded good! We also signed the waivers for surgery and anasthesia while we were there.
We headed to the Hilton Garden Inn to check-in, as I work at the HGI in Tallahassee we stay cheap. My evil GPS led us into Gainesville's projects trying to get us to turn down some creepy dirt road, we joked that it was trying to lure me to rape-ville. We finally found a gas station and Thorin charged his phone enough to call and get directions, we made it there and spent some really sweet time with Colton, probably the first time since we were in the hospital when Colton was born, that we got some alone time just me, Dada, and Colton. It was extremely cute and a wonderful bonding experience right before his surgery,. Thorin and I taught him to "raise the roof" with his hands(raise them both up and throw them down over and over) & he picked it up so quickly! We went for a latish dinner and then headed back to the room to attempt to get some sleep.
This week has continued with the stress, had to call out of work yesterday because could not find ANYBODY to watch my kids on the less than 24 hours notice work gave with the new schedule. Today I had to beg my Aunt to watch him a few hours then their Aunt Angelica said she'd help.
So stressing about that today, of course I have 2 offers of help tommorow lol.
Some of the fun comments I've heard this week were:
1) At Colton's dermatologist appointment 2 teenage/college girls were talking about how cute he was with each other, and one whispered "Does he have face paint on?", at a dermatologist office.......umm der??
2) One of my coworkers who is helping out with my schedule next week told me when he was explaining to a friend about why he was having to work that shift (i.e. my son's surgery), that his friend asked why would she schedule that over Thanksgiving? What if he died? Then every year at Thanksgiving everyone would be depressed.
REALLY?? What's wrong with people, way to stay positive and say encouraging things guys, admittedly my coworker said he KNEW everything would be fine, but thanks to his friend for saying something that I was already having to fight out of my own mind before hearing someone else say it.
Extra Stressors With my Baby's Surgery
November 15th, 2012
My problem was even if I didn't get fired, there was no way I could keep working full time while Colton had the tissue expanders, for a few reasons:
1) Colton was going to need special care while the
expanders were in to avoid infection, avoid damage to
the expanders, etc.
2) Nolan had to be kept from damaging his brother's expanders in anyway
3) My family usually watched the boys while I was at work and they really aren't comfortable with being
responsible for his care at this level
4) No daycare was going to accept the liability of having Colton enroll, nor do I make enough or feel
comfortable trusting that they would be able to supervise him around other kids enough or keep him
So I decided if I didn't lose my job I'd also ask to be cut down to 2 shifts a week, basically enough for us to scrape by, while limiting the amount of help I'd have to ask for from my family and ensuring I'd be the main one responsible for Colton's care. I put in my request a month in advance and was told that I would be fine for those dates.
I glided along thorugh my last month before my baby's surgery and managed to come across some more information about the surgery. For one, somehow the Nevus Network, a board of people discussing congenital hairy nevi never showed up when I searched the actual term the first 5 months of Colton's life, but did pop up when I searched for tissue expander insertion. I found myself upset by some of the brief statements had made, encouraged by others. Basically some people do really well with their treatments, some have complications and don't, not that helpful.
I also found a detailed explanation of the tissue expander surgery, which revealed to me just how frequently I was going to have to go back to Gainesville (or hopefully that local surgeon) for it to be expanded. I also learned about that process, namely that each tissue expander has a port on the inside of the skin. Every time we go back they will have to numb the skin around the port and insert a needle into it and fill it a little more, freaky, my poor baby! Apparently there will be drainage tubes hanging out of the site for up to a week, I definitely needed to make sure Nolan was away from home or I knew he'd be pulling on those! Managed to set up for him to be gone the full week to my Aunt Kathy's for Thanksgiving, (he was already supposed to go down a few days), Thorin was NOT happy about that lol.
So we rolled right along through a month of firsts, Colton's first time saying Dada, (on Halloween), his first time saying Mama (Guy Fawkes Day), and his first tooth! He stayed healthy mainly by me being freakish about people getting in his face. Then the week before the surgery arrived and things started to go down hill. All the sudden work said I needed to figure out who was going to work Thanksgiving (what were you doing the last 3 weeks of you saying we were fine managers?) and we're short staffed, the simple asnwer is NO ONE sorry, thought you would have rushed your hiring process you are going through right now to make sure you had enough employees, (this has been resolved now, one of my managers has to do it). And then this week my elder son came down with the cold I had been fighting for them NOT to catch from family the past week and a half or so, and then two days ago Colton started with the sniffles, so far thats all hes had and I keep hoping it doesn't get any worse, because the sniffles could just be from teething which he is doing hard core! I have yet to find out if the surgery will still proceed as scheduled or if it will need to be delayed, in which case from what I've read, it'll be delayed up to 4 weeks, right around Christmas, not to mention my already having worked out work, my elder son being gone, it would just uber suck if this has to be moved, not to mention it would mean his first birthday would be right in the midst of the final surgeries, no fun at all!
So all in all I'm stressed, already anxious about the surgery in the first place, to have everything possibly fall apart in the final days is just making everything really overwhelming. Everyone keep prayers/ good thoughts that the sniffles go away and everything can proceed as planned!
Flashback: My Thoughts that First Day
So here I was April 28th, 2012 with this beautiful new baby, Colton Everett, with absolutely no idea what the mark on his face was. We had finally been moved to our regular room while we were in the hospital and it was just me and Thorin, who promptly passed out. I was sitting holding my little man, and I'll admit my thoughts were a little irrational. Admittedly I'd been up a long time and just been through a lot, but these are things that still bother me a little now. When I was growing up, I never would have considered myself to be a shallow person, I did not judge people based on appearances normally, I wasn't obsessed with clothing, I had very little clue about makeup, but as I got older I think I became more shallow, I got more and more picky about who I dated (appearance wise). And just so you know, I believe in karma, so here I was my first son is extremely handsome, as is Colton, but he has this large visible blemish on his face, and I firmly believed, and still kind of believe that I brought it on myself. I had gotten a little too big for my britches, and the universe had decided to teach me a lesson, appearance is not that important, and that lesson worked. The more I looked at my son's face the more perfect I thought it was, unique yes, but he is the sweetest little man you will ever hold, everything about him screams "LOVE ME" and it works, strangers ooo and ahh and fawn over him. Some other things that crossed my mind, I had just watched Phantom of the Opera (one of my faves) earlier that week, and although the markings were different it was a similar idea on their face, why did I watch that movie I jinxed my baby! I still have not been able to watch it again or listen to the soundtrack, which I usually did fairly often. The George Lopez Show, his mom says the reason she was always so critical/ mean to him growing up was to protect him from the evil eye, did I brag about my beautiful, healthy babies one too many times, I turned the evil eye our way? I know this may sound a little crazy but thats what I thought about sitting there, when I wasn't busy thinking about how much I loved this little man.
Now when Nolan was born, I hardly had a second to myself in the hospital, visitors were endless, I even got a little overwhelmed, wishing I could get some more me and Nolan time (especially since he was sick and they continuously took him away for tests and to test his jaundice levels). With Colton, the opposite happened. Thorin went home to shower, and grab some food. Thorin's mom and stepdad and little sister and brother were supposed to be headed to see Colton and it took them a lot longer in the cafeteria than they said and I was thinking to myself "They are scared Meghan (Thorin's then 5 year old little sister) is going to hurt my feelings somehow they are explaining everything to her". They came in and visited for a minute, quickly followed by Thorin's Nana and Aunt. Thorin's mom it turned out was sick so she couldn't really come back. And then there was a lull, my mom was stuck working, my Aunts were waiting to bring Nolan until later when I could shower and not look scary for him, and Thorins dad and stepmom (Frank and Sandy) couldn't make it until later in the day. And I started to get really depressed, I felt like people were staying away because of Colton's face, because he wasn't "perfect" (rationally of course I knew this wasn't the truth, but irrationally, I couldn't help it thats how it felt to me), I had no friends come to see him (although admittedly some planned to come Monday and I ended up getting discharged early because we were so healthy). I felt hurt.
The doctor from the pediatrician's office did her evaluation of Colton and this is when I first learned that it was a congenital hairy nevus, not really having any clue what it was, she didn't really explain much past the term (my ineptitude with asking questions hindering me greatly in this situation). So I just figured it was a type of birthmark. Thorins older brother and (soon to be) wife Barbara came by, with Frank and Sandy and my Aunts and Thorin and Nolan all making it at about the same time and I told them what it was called, etc. I had asked Aunt Laurie to fill my mom in on Colton's face earlier in the day as she was the one whose reaction I was worried about the most (she does not always cope well emotionally with things), but I guess she had to relay the message to Grandpa Matt (my mom's boyfriend) as they were both working at Little Italy (where I have worked and know everyone) He in turn told everyone there BUT my mom (not wanting her to freak during work), and like the telephone game got relayed worse than it was as a large facial disfiguration of some kind, upon which my old boss, Ms. Vjollsa, started to cry and get upset (she loves me). So everyone there knew but my mom and one of my good friends, but when my mom got told she gathered everyone up not knowing they knew, now she was thinking it was affecting his mind or something so she was quite upset, my friend came running afraid something bad bad had happened (to me or the baby). By the time she made it up to see Colton visiting hours were over but they were nice enough to let her and Granpa Matt in, and she waws visibly relieved, you could tell she was upset but so happy it wasn't worse, didn't touch his eye or nose (danger zones) and as far as we knew had no affect on the brain or functioning whatsoever. ( I say this because it wasn't until about 3 months later at the dermatologist that I heard that theser moles CAN in fact stretch into the brain).
So they left, Thorin slept on the couch, and helped some throughout the night, and I was starting to feel better. My family of course immediately started doing internet research which helped us sort through some things, but we quickly found that there was NOT much information out there for us, basic overviews, no pictures of surgeries, or the steps of healing, and only the very basics about what types of treatments there were. The next day it was basically Colton and I alone all day, until Nolan came back to visit late that night and Thorin came back leter (he had had to work), and I was less and less bothered by the mark, and more in awe of my new baby. It was kind of a shame I had less visitors this go around because I was able to shower and dress and move around and put on makeup and look like a living person this time around, whereas the time before I felt like death and looked it.
I felt a little awkward at first putting up pictures of Colton, I was afraid people would ridicule him or be mean about his appearance, if not directly to me, then behind my back, and I was self-conscious they wouldn't understand how wonderful my baby was. As anyone who knows me now knows, I quickly overcame that fear, I have now posted a ridiculous number of pictures of my baby, if people don't like it they better keep it to themselves lol.
The basic information I garnered from my Aunt Brenda's research was that it was a mole, not a birthmark, that they usually recommended treatment around 6 months, and that the best looking treatment was the insertion of tissue expanders ( some type of balloon under the skin), with no idea how long those expanders were supoposed to be left in or any details of anything. Hearing that 6 months deadline, I assumed I would be getting in to see plastic surgeons, etc really quickly but the referall processes were slow, I didn't get into the dermatologist for the first time until mid August, didn't see the in town plastic surgeon until that month as well. The dermatologist was the first time I even heard that there was a risk of moles stretching internally, and as Colton's is on her face it could feasibly extend to the brain, if he had not been developing well or had experienced any seizures it could have meant that this was the case with him, and we might have had to do cat scans and worry about WAY more serious issues. Fortunately hes a healthy little man and the mole seems to cut under that region. She still recommended removal because of the melenoma risk, (especially as its on his face a difficult place to protect from the sun) and of course for cosmetic reasons.
I was starting to freak out then as well, if this was supposed to be done at 6 months, we were quickly running out of time, it was supposed to be in October according to that schedule! Now my pediatrician had mentioned pediatricians in Atlanta, my family had suggested the Shriners Club as apparently hairy nevus are something they help with (their brief page being one of the few that pulls up when you look up the condition), and I just assumed I'd be going someplace out of state for this surgery, with like the best of the best doctors, forgetting our insurance was Florida based and the procedure was going to be limited within the state. This wasn't revealed to me until our meeting with the plastic surgeon in town( there are not many pediatric specialists based out of Tallahassee as I learned with Nolan's circumcision revision, we had to go to Jacksonville). He was not very familiar with the surgery, not being pediatric based but said he would consult with some of his friends in Miami, etc, but that he thought it best to wait until Colton was a year old because of anesthesia risks. I was a little confused by this conflicting with the research we had done but figured he knew better than me about it. Well I waited a long time to hear back because it turned out my insurance had the wrong pediatrician on file for Colton, and wouldn't grant approval for the appointment we'd already had until it was fixed, wasting about a month before I worked out that delay.
Finally last month we headed to Gainesville to meet with Dr. Lentz with the Florida Center for Platic Surgery & Aesthetics through UF at Shands. I had researched her, she did a specialty with pediatric plastic surgery up in Chicago and specialized in cleft lip & palette cases. As soon as I got to their office I became more confident about the procedure, this was the first time I was immediately greeted by people who knew exactly what the mark was, had seen it multiple times, and had personally participated in treating it. The nurses, doctors, everyone loved my little man (who I had dressed in a onesie with a blue and orange pinstripe tie on it in homage of UF) and wanted to snuggle him, and everyone acted like it was so normal. Nurses in Tallahassee had to ask me what it was, it was really nice to feel like Colton was in the hands of people who were confident in their knowledge, Dr. Lentz told me as soon as the Tallahassee doctor called her she said those were her favorite cases to treat :) She showed me the type of ballons used for the procedure and it was determined that he would have one inserted into his righthand scalp(partially on forehead) so that some of the regrown skin would be hair bearing to maintain his hairline, and one would be in his neck. This was the first time I heard how long these expanders are in and what they entail. Up to 5 months of going back once a week to have more air inserted into the expanders, so as to gradually regrow the skin!
This was a little balking thats not a short drive to make weekly for people as strapped for money as we are, we are still hoping that the doctor in town might help with that part to save us on some trips, if he does it will be out of the kindness of his heart as he won't get paid for it, and I will certainly rave about him later on if he does that for us. Apparently there is a kit to do it at home, but I am so NOT comfortable with inserting air into a balloon inside my kids head. So she showed me a few pictures of some of the scarring developments of kids who have had the procedure but she only had one of the cases with her as her laptop had been left at home, it was a slightly older girl and she did have some scarring left, but I'm hoping it will be limited with how young Colton is, and how much better he should heal. They set us a date, November 19th for the preanesthesia appointments and November 20th for the actual surgery, which seemed like it would work out perfectly as my older son was already supposed to be headed to visit some of my family over Thanksgiving and I thought it would work well to just extend that trip so Colton and I could sort things out after the surgery without having to worry about how Nolan would handle it right off the bat. More on some of the decisions regarding work, and some issues we've faced in the countdown to the procedure, only 5 days til we head out now!
Flashback: My First Delivery Experience and
How It Affected my Mindset For the Second
How It Affected my Mindset For the Second
For a little background of how I felt heading into my second labor, I was kind of freaked out, my first time out I was two weeks overdue, induced, and in labor for over 24 hours. Nolan's head (which was huge) was turned in a slightly off position which the doctors didn't realize until after they had refused for an hour to give me anymore epidural as I was at 9 cms and they thought he was ready to come out, so I was sitting no meds in pain and exhausted, they finally knocked me out for an hour and set me up so he would hopefully turn a bit.
They woke me up and said it was time to push and we went into it, apparently his head was still not positioned correctly and the doctor, or the butcher man as we fondly call him, (without telling Thorin or his mom who were in the room with me what was going on) gave me an episiotomy, which I followed with a 4th degree tear. Basically blood everywhere, the nurse actually told Thorin's mom after they had never seen so much blood or anything like what the doctor had done and what had happened to me (also garnered from my family overhearing nurses in the halls discussing it (HIPPAA anyone?). I had over 30 stitches and started throwing up nonstop for the first hour of my baby's life basically got to hold him a second before they figured out I was near passing out, I felt and thought I was going to die, Thorin almost passed out, he thought I might die. I could hardly walk for two days without assistance and was very near to having a blood transfusion before my numbers suddenly started improving, Nolan got an infection from being inside too long after my water broke, and it was just not the ideal birthing experience, along with how long it took for 30 stitches to heal, no fun! When we got to move to our actual room, Thorin asked the nurse "How did people used to have babies, with this type of situation and not as advanced of technology, etc. and she asnwered "You know in all the fairy tales how the mother is dead? Thats why." So now we always joke that if I had lived in a different time, I would have been the mom in all the fairy tales that croaks, especially since I am O-, and therefore the RH factor plays a role in my pregnancies, I had to have the RhoGAM shot both pregnancies as if the babies were O+ (which they were), without the shot my cells would have killed theirs off, and they would have been "bluebabies" i.e. stillborn, there went all my wishes that I had lived in the past.
I will say I had two very healthy pregnancies with few complications other than ridiculous morning sickness (particulalry with Colton as it lasted until I was 6 months pregnant, I could hardly eat anything, ended up in the hospital for it at one point having thrown up 15 times in one day while trying to care for my toddler, and nearly fainting a few times). I made a mistake with my choice of doctors that first time, starting at the health clinic figuring I'd switch when I got farther along and then when the doctor I had had recommended was too booked to take on more patients, just stayed where I was, this was a stupid stupid choice and I ended up with a doctor who botched my delivery and botched Nolan's circumcision shortly after, which he had to undergo corrective surgery for back in August 2012.
So anyways knowing I definitely wanted a better doctor the second time around,I went to North Florida Women's Center from the beginning, I still couldn't get that recommended doctor but got assigned Dr. Price, and she was wonderful, very compassionate about my first time around and happy to fully explain anything I had concerns about (which I'll admit I'm terrible about asking questions I feel extremely awkward in those situations). She told me from the beginning that they did NOT do episiotomies, that they would NEVER let me get to be 2 weeks overdue, and that depending on the size of my baby as I progressed( if I was determined to give birth naturally as opposed to a C-Section, which I was) she would recommend I be induced a week early so as to avoid tearing if he got too big considering scar tissue doesn't stretch easily and I was even more at risk for ripping.
So as I got to my last month of pregnancy and got to the final ultrasound it was determined that my baby (surprise surprise) had a gynormous head just like his brother! And I won't lie I started to panic, she was saying he was already over 8 lbs I still had 3 weeks left, and I couldnt get an appointment with my doctor until after my due date, too many patients. And the lady I had 2 appointments with completely disagreed about inducing early, stating that those ultrasound measurements are often off (I knew they weren't and I cried as soon as I left the office), and that it was best to wait until atleast after the due date, after the second time I was turned down, I tried to get in contact with Dr. Price directly and my message was relayed to that lady doctor instead, at which point I was petrified, this lady must hate me I tried to go around her, and we had casually discussed the possibility of doing a membrane sweep at that next appointment (a week before my due date) to make me more viable for induction ( in her terms). So I thought we were just dicussing and she was just going to check my status and she went ahead without saying anything and did the friggin sweep and those things HURT let me tell you!, Especially when you are unprepared for it. I do not like that lady, apparently she doesn't do deliveries, the discovery of which was the only thing keeping me fairly together because I was SO scared she was going to end up being the doctor on call during my labor.
They made an appointment for 2 days later to check the condition again and luckily this time it was not with her, it was with a very nice man who I had just that day overheard in a different room being very sweet and listening and explaining things to a patient. Even so Thorin's mom accompanied this time, as the rest of the family was getting alarmed that I was still being ignored and was working myself up, she had recently completed her doula training, in addition to giving birth to five children, and so was better at communicating my fears than I was. He did agree to set the induction for the day of my actual due date April 27th, 2012, when Dr. Price was actually the doctor on call!
A little note about induction schedules, for both of my inductions I was scheduled to arrive at the hospital at 6 AM, and for both I recieved calls stating too many women were having babies and that they would call me in an hour so to come in. Now the first time this happened with Nolan I had no clue what to expect, I had slept and showered at 5:30 when I recieved the call and could not sleep for anything after the delay and every time I called they said nope no room. I started to freak, they were never going to let me have this baby (remember I was 2 weeks overdue) he was never coming out, these people were evil lol!, not until my Aunts came to pick me up to take me to dinner at Chilis at 8 PM that night did they call and say I could come in. So low and behold my induction date for Colton arrives and I had decided to get to the hospital an hour early, they weren't telling ME no room, I was beating those other women to the punch, but guess what? Right as I finished getting ready those jerks called me, and as the day stretched on I found myself in a state of deja vu, not what you want to find yourself in when your already terrified about how similar your situation is turning out to that first experience. So we decided to go to Chilis to eat dinner, hey it worked the first time right, so my Aunts and Nolan went and ate at about 6:30 he threw tantrums throughout, I kept having to haul him out (yes I lifted and fought with my 19 month old throughout my pregnancy whether it was good for me or not). We were sitting outside letting Nolan play a bit when low and behold at right about 8PM they called and said they had room for me and we were off, oh when those calls come in its exciting we had to run run run lol went back home and Thorins mom came and got me to take me up to the hospital and meet Thorin and my Grandfather the same crew with me the whole time the first time (although my Grandfathers never in there for the actual delivery, and this second time he got too tired and had to head home befor my delivery), my Aunt Laurie also joined in the room this time. I did get to see Dr. Price for a minute before she headed home (her on call shift being over and her having performed something like 5 C Sections that day). And guess what she was SHOCKED to see me, she thought I would have been induced the week prior, oops. She encouraged me to do a C-Section, I resisted, I just could not stomach that route, I would take my chances giving birth to my baby, I just couldnt imagine the bond being the same the other way, I know it is and I know its sometimes necessary, but it just wasn't for me.
So I was scared yes, but determined and happy to finally be at the hospital, I knew I wanted drugs, lots and lots of drugs lol and got them, and whoever did the epidural this time was amazing!!!!! Because although of course I felt some things it was nothing compared to that first time. Now as a trade off I had been given a really awesome drug before the epidural that first time and couldn't even feel the needle entering my back, whereas this time the prior drug wasn't as good and I could feel the needle grinding around back there, but I'll take that for hardly any labor pain any day. I slept a large part of the time I was in labor it was nice, they woke me up to do a check and it was time! And the doctor who was delivering was very nice and had explained to me that we were just going to take our time, just push with the urge and she was going to massage the area during the delivery to limit tearing. Now I had pain during the pushing of course, and I freaked I couldn't remember but I thought it felt the same as the first time, I was tearing again I knew it! I asked her if I was and she said no, but I didn't believe it I thought she was trying to keep me calm, I started crying and I cried that whole delivery. My Aunt was making pained expressions, I figured because she saw I was tearing, Thorin just kept stroking my forehead, he was amazing through both of my experiences, he kept me going. It turns out I totally wasn't ripping, that woman was so patient and wonderful she just kept massaging and easing Colton out and guess how many stitches I needed? ONE!! versus 30 something the first time? Quality of doctors matters so much!
My baby Colton Everett was born and he was healthy, and I was just starting to calm down a bit as I realized no one was sewing me up and they were telling me I really hadn't ripped, and then Thorin told me the baby had a lot of bruising on his face and I felt so bad he had gotten bruised coming out (Thorin had black eyes when he was born, the boys get their big heads from him). But then I heard my Aunt and Thorin's mom asking "What is it? Is it a birthmark?" and asking "What is it" over and over with the nurses not answering and the panic came back, something was wrong and they weren't telling me anything! Thorin saw me losing it and went to his mom and told her to stop talking NOW, but was not comfortable enough to tell my Aunt, she however sensed she needed to leave before I flipped on her for asking (as I did at my first delivery she was in the room watching me and I snapped at her to leave, one of the reasons we had wanted her included the second time around).
Thorin does know me better than almost anyone and really saved the situation. All we knew was it was some type of birthmark the doctors/nurses there at the time did not recognize the mark which covered the right side of my son's face, and the main nurse checking him hazarded the guess port wine stain, but she even said it didn't really look like that. I was crying again, my beautiful baby, so perfect minus this stain and already I was sitting thinking about how cruel kids are in school and how people would judge him for it (I mean I only had braces and glasses and got teased mercillesly my 6th grade year). But Thorin told me "they can treat it, they will fix it calm down Bear(his name for me)" And I did calm down, I still hadn't even really gotten to hold Colton yet and just told Thorin to go be next to him while they did his measurements, etc. because I remembered it had soothed Nolan to have Thorin next to him when he was first born and I was too sick to hold him. When they gave my sweet baby to me I just held him and loved him and stroked his little cheek. Not until later did we actually learn in was in fact a large congenital hairy nevus. I will continue the next part of our story later, with starting to sort out what it was, telling family, coming to terms with it, doing research, and some of the sweetness that is Colton!
A Brief Introduction to Us
Nolan Walker is my two year old, my first baby, sometimes he is Momma's
sweetheart and sometimes he is the biggest little monster I have ever
met! He was born September 24, 2010 after an extremely long, difficult
delivery and minus an infection and a little jaundice he has been a
healthy boy, and my world was immediately all about Nolan!
Their dad (Thorin) and I chose the name Nolan because
1. It was my Grandpa Fred's middle name and 2. Thorin is a crazy obsessive Florida State Seminoles Fan, like no exaggerating hes psycho about it if they lose its like there goes that whole week, Thorin's gonna be a jerk.
Lol the picture above is us at FSU fan day August 2012.
Nolan knows what he likes and his favorite things are (in order of importance):
#1- Balls- Any and all, especially football, he throws them all, shouts ball at all. If he sees football on TV he says football really loud and gets excited, when he was little he would just say BOOM.
#2-Cars-He has to have a toy car on his person at all times, or he freaks out, he loves vroom vrooms and he got to go on a car ride at the fair for the first time this week, and from then on all he would say his car he rode that ride about 20 times and threw a fit if we tried to get him to go on a different one.
#-Elmo-He loves Sesame Street in particular Elmo and the Cookie Monster, when the theme song plays he names all the characters he sees and hell cry "ELMOhohohoho" if it gets shit off or the episode ends. He had a cookie monster hat last year, he has a new elmo hat for this year anda cookie monster loofah and towel, while Colton has the elmo towel and robe. (Yes I fully support Sesame Street, whose unemployed now sir Romney huh huh huh?) And he has learned so much from that show so I don't mind it so much.
#4-Scooby Doo- He loves the real people movies or the cartoons (finally just bought him some seasons since they don't put REAL Scooby Doo on TV anymore). And he LOVES the gummy Scooby Snacks if he finds the box, games on he will ask for like 500 packs if I'd let him have them.
5- He has other movies hes obsessed with and asks for: Shrek, Madagascar (or the giraffe movie), Finding Nemo (the fish), Lady and the Tramp (Dogs) or now Milo & Otis (Cat...Dog) lol.
#6-Bananas-This child would eat the world's supply of bananas if he could and if u don't cut it up before giving it to him he puts it to his mouth and will continuosly shove the whole thing in while chomping.
#7-Momma and Brother(Colton)- He is so loving to his brother they are super sweet and play so well together already, even though Colton's only 6 months old.
He is the primary reason I decided to start a blog because he has a large congenital facial hairy nevi ( or a mole present at birth that is covered in hair as well). I had never heard of such a thing, nor had any of the nurses or doctors present at his birth. I will share more about that day later on.
Once a doctor came who knew what it was we began looking into what it is, what treatments are, and honestly although there are a few things out there, and a site for people/parents who have had them to discuss, there really isn't that much, and no detailed here is how we dealt with it, here's what happened to me, here's how it turned out. Which is unfortunate, because it leaves me making decisions for a 6 month old that will affect his appearance for the rest of his life without any actual attestations to base the decision off of. There is a melenoma risk and per dermatologist and plastic surgeon recommendations he is undergoing surgery in 8 days at UF at Shands to have tissue expanders put in, the first step of many which will lead to the removal of the mole with (hopefully) what will be minor scarring, and no complications! So in a week my baby is going to be going through more than I feel any baby should, and I feel a lot of anxiety and guilt, "What if he would have preferred the mole when hes older?" "What if he wouldn't have developed melenoma?", especially since I love my little man's face when I look at him that is part of who he is, my little wolf man, I can't imagine him without it.
We've had some people stare at him, some (even kids) say how cool it looked and we should keep it that way, that it marks him for greatness and will build character. On the otherhand I haven't been told these directly but some ignorant people apparently believe its a "sign of bad luck" and "the mark of the devil". If anyone does ever say these things to me I will most likely go Dumbo's mom on their butts and land myself locked up so lets hope stupid people keep their mouth's shut. Yes I cry wholeheartedly now when I watch Dumbo with Nolan, because I feel like Colton's my little Dumbo and that the "Baby Mine" song is our song, I couldn't bear it if kids were cruel to him for something he couldn't control. But anyways, going through this with no real full experience stories at my disposal has been rough and I've been thinking that I'd like to atleast document our journey so that it might help other people make easier/more informed decisions. I will go into more, most likely tommorow, about seeing my baby the first time, learning about what the mark was, and the journey its been to get to this point, and what we will be facing next week.