Surgery Come and Gone

Wow! The fated day finally came and went. It wasn't easy and it's still not, but I'm relieved and Desmond is on the mend. I'll start from the beginning and try to give some details, but this may still be brief because I am bone tired. We came to New Orleans on Wednesday and checked into the wonderful vacation rental my sister booked so we would have a place to cook, shower and rest during our stay at the hospital plus a few days after we get out. The long walkway to the gate was the perfect spot for this little walker to get some practice and for momma to get some good pre-op photos.

He loved all of the different plants in the garden.

Desi had to point out everything. 

Wednesday morning Desmond was pretty amazing considering he hadn't had any solid food since dinner the night before. We checked in at New Orleans Children's Hospital at 10 a.m. and were in a room waiting for surgery by about 11. Rhonda and Willie, Desi's grandparents on his father's side, arrived right as I was having to pin him down so the nurse could draw his blood, which I'm sure was not a very comforting site for them. But that was soon over and we all got to just hang out with him for about another hour before they called us back for triage. In the mean time, he fell asleep and was given some "giggly juice" so he would be nice and relaxed when they had to take him away from me. He never even woke up.

They took him back at around 12:30 and told us that the surgery wouldn't actually begin until about an hour later and that it would be an hour and a half to two hour long surgery. So, we were hoping to hear something from them by about 3 p.m. They came and told us when they made the incision, which was at 1:20 p.m. We all sat together, my mom, Willie, Rhonda and myself, and talked about what a great little boy he is.

Not even an hour later the door to the waiting room opened and there stood Dr. McBride, the neurosurgeon, and Dr. St. Hilaire, the plastic surgeon, telling us that everything was over. They said everything looked exactly as it had in his scans, sagittal suture completely fused from front to back. All of the other sutures looked fine. He did have to have a blood transfusion (thank you Elihu!!), but that is normal. They said it would be about an hour before they would have him cleaned up and awake for us to go see him. This is when I began to get impatient. It took longer than an hour and I started to get worried. Just as I was about to lose my patience and go ask someone what the holdup was, they called us back.

When I walked in the recovery area a nurse was trying to give him a bottle of apple juice. He saw me and started crying. When I came over and took over with the bottle he was content and started to fall back asleep immediately. It makes a mamma feel good! He was not swollen badly yet and they didn't shave his head one bit, so you could almost not tell he had anything done. They were ready then to wheel him to his room, so we all followed him up and got settled in pretty quickly. He went straight into my lap and stayed there for a few hours.

The poor little fella was so exhausted!

The Browns had to hit the road because they had a death in the family and had to get back to Magee for the wake and the funeral. They said their goodbyes and promised to come back on Saturday to see their big boy. Later that evening Toi got in from Los Angeles and brought us some humungous shrimp po-boys from the store across the street from our vacation rental. I ate with a sleeping Desi in my lap and hoped I didn't drop shrimp crumbs on his incision. It was oddly reminiscent of the time right after his birth.

Dr. McBride said when we lye him down in the bed to make sure he lays flat on the back of his head to help flatten out that bump he used to have back there and to prevent him from getting any flat spots on either side of his head, but it's pretty hard to do. I never really thought about it before, but he has never been able to sleep with his head straight. The bump in the back has always caused him to turn to one side or the other. So he has a little donut pillow to help him keep it straight and hopefully he will learn soon to do it on his own.

The first night he would start to bleed behind his right ear when we laid him down, so they had to put a bandage around his head and it looked like a big, white turban. Still nothing to worry about, the nurses said. Some bleeding is normal. That night they came and took his vitals every hour for the first four hours and then for the next four hours they came every two hours. The nurses were great and tried their hardest not to wake him. I woke up every time they came in, but I was able to get back to sleep pretty well most times. At about 2 a.m. Desi woke up and was chatting and smiling and playing peekaboo with the nurses. It was such a relief to see those dimples again. It felt like it had been an eternity.

Nana enjoys one of the few times Desi allowed himself to be out of my arms.

He eventually went back to sleep and so did we. We were all up by 6:30 and mom ordered our breakfast to be sent up with Desmond's. Desmond ate most of a banana some yogurt and drank a carton of milk. He has always been such a champ when it comes to eating. The swelling was a lot worse that morning, especially on the right side. His eye was mostly swollen shut and he had a mean shiner. They said it would probably migrate to the left side of his face too and not to be surprised if the other eye swelled shut as well, but fortunately that never happened.

We spent most of the day just hanging out in the room with the Desmonster. He was playful and sweet most of the time. The doctors and all of the nurses have said they wished all of their one-year-old post-op patients could be as awesome as he is. We played bubbles a lot!! That is hands down the best thing I brought with us to the hospital. He points to them at least ten times a day and says "bubbles!" He even said "pretty bubbles" once!!

Today, the swelling has gone down significantly. His right eye is not completely swollen shut and the bruising is starting to fade already. He had to have another blood transfusion because his red blood cell count was down, which, again, is normal.

Desi and I chill while his wonderful nurse, Sabrina,
finishes all of the paperwork for the transfusion.

They have him hooked up to that right now as I'm writing this. I left him in the very capable hands of his Nana and his aunt Toi so I could get some fresh air and some time alone for a bit. I've pretty much been holding him nonstop for the past three days, except for a few hours at night when he's asleep. He won't let anyone else hold him if I'm in the room and I'm completely exhausted. After his blood transfusion is completed he is going to get a bath!!! We get to wash his hair. It's probably not going to be a pleasant experience for him, but his hair is some kinda funky after all of the blood and all of the antibiotic ointment.

They said after the blood transfusion that he will feel a whole lot better and he MIGHT be able to be discharged tomorrow if his blood count stays up. So keep your fingers crossed for just a little bit longer that we get to get out of this hospital and move on to healing in the comfort of our very own vacation rental for a few days and then Nana's house on the coast.

I'll try to update the next time I have some good news. I want to let you all know that I could not have made it through all of this, from the very beginning when he was diagnosed, without each and every kind word and encouragement. From my close friends and family to people I haven't seen or talked to in a decade and complete strangers from all of the craniofacial organizations and their supporters, I am humbled by the love and outpouring of support. Thank you so much...and keep it coming 'cause this isn't over yet.

Time keeps on ticking...

Wow. Three weeks from today at this time Desmond should be done with his surgery. It's amazing how this has seemed to stretch out forever yet zoomed by at such a speed I feel like I'm out of control sometimes. And all of the bumps in the road have just made the ride that much more rough. I reassure myself by remembering that Desmond doesn't know any of it is going on. He is as happy as could be and is growing and developing wonderfully.

He is still pretty shaky on his legs and prefers to crawl most places. He has become quite the little chatter box. He still has the same four word vocabulary of dog, diaper, uh-oh and mamma, but he chatters nonsense all the time and it's really cute. We went by the hospital the other day to see his new best friend Leo and his proud parents, Sophie and Alex, and Desmond chattered away the whole time we were there. He pointed at Leo and talked to him.

Sophie and Leo on his second day out in the big world.

Desmond is doing really well in the 1-year-old room at daycare. He eats most of the same meals as they do, unless it's something like corn dogs or chicken fingers and then Mamma sends his lunch. He sleeps on a mat for nap time every day. He even has homework!! Don't worry, no algebra yet, just coloring mostly. Stay tuned, next he'll be enrolling in college.

UPDATE: I forgot to mention when I originally posted this that I checked in the MSCHIP database of providers and both Dr. St. Hilaire and Dr. McBride are providers!! Now we just have to make sure that we get prior authorization for the surgery, which Mary Ellen is already on top of at CHNOLA. Having competent people on my side at the hospital has made me feel sooooo much  better about all of this.

On the Move

Desmond is taking big strides in becoming a big kid. Not only does he sit at the table to eat at daycare and join in activities like singing and arts and crafts, but now he is truly mobile! Last Sunday we stopped by Sophie and Alex's house to drop off some food for their freezer in preparation of the arrival of their baby. Alex's mother, Lupe, was there and asked if Desmond was walking yet. I told her not yet, but soon. Not even one minute later Alex stood Desmond up and he walked a good three or four feet to Sophie. I had no idea it would be that soon! We all screamed and clapped and made him do it over and over again. He liked the attention for sure.

In other not so good news, I got a letter today from MS Medicaid. We had our reevaluation last month to see if he was still eligible and unfortunately he is not. I guess the child support I started receiving last February pushed us over the limit. He is, however, eligible for MS CHIP insurance. I called the New Orleans Children's Hospital to make sure we were still covered and Mary Ellen said she would run it by the business office and see. I also talked to someone at CHIP and she said if they aren't they just have to call and obtain prior authorization before the surgery. It doesn't sound like it should be that complicated, but it still scares me.

When I woke up this morning there was a reminder on my phone that we were supposed to be checking into UMC in ten minutes. I guess I forgot to delete the original surgery date from the calendar on my phone. It's been on the back of my mind all day nagging me. Then I go home to find this letter in the mail. I'm trying not to worry too much, but i don't know what we'll do if CHIP won't cover the surgery. I just have to tell myself that something will come through.

Surgery Date!!!

I snagged this shot of Desi while I was taking L & O's pregnant portraits.

We finally have another surgery date! Desi will check in to the New Orleans Children's Hospital at 10 a.m. on Sept. 8 and his surgery will be at noon. As I said before, the type of surgery they will be doing should only take about an hour and a half versus the six and a half hour one they proposed at UMC. Desmond may not even have to go to the ICU and will only be in the hospital for three or four days if everything goes well.

I'm so excited to have things moving again. Last week we got our care package from Cranio Care Bares, a non-profit organization that sends out care packages for Cranio families for their time in the hospital. It was really wonderful and full of all kinds of goodies that I would not have thought to bring myself. It was still kind of a sad reminder though that his pre-op appointment should have been this week and his surgery next week. But, I'm trying to move past my disappointment in UMC and just be grateful for the craniofacial team at CHNOLA.

Did I mention they're not going to shave off his beautiful curls?

And as always, I could not have made it this far with all of this without the support from my family and friends and the wonderful people from the cranio networks I have found online. We love you!

New Beginnings

I haven't updated about Desi's surgery in a while. When we last checked in on the blog Desmond was scheduled to go under the knife on August 10.

It was finally getting so close and then I got a phone call from one of the nurses at UMC telling me that they were sorry to tell me that Dr. Angel, the pediatric plastic surgeon, is no longer with them and therefore they can't do it anymore.

Needless to say I was completely devastated. Dr. Angel was the only plastic surgeon in the state that could do the surgery and so far MS Medicaid has been paying for everything. So going to Dallas like they recommended was pretty much out of the question.

Thankfully, Desi's pediatrician, the wonderful Dr. Sluis, recommended I look into the New Orleans Children's Hospital. I didn't know, but they have a cleft lip and palate and craniofacial clinic. They are also MS Medicaid providers! I gave them a call last Monday. They were in clinic that day, which they only have once a month for Desi's age group. So the nurse took a message and said the coordinator would call me back the next day.

The coordinator, a really nice woman named Mary Ellen called on Tuesday. I explained everything we had been through and that we we're basically hospital homeless. She squeezed us in the little baby clinic on the following Monday. If she hadn't been able to do that we would have had to wait until September for the next clinic with a MS Medicaid provider doctor.

So last Sunday we headed down to New Orleans for the weekend. We stopped in Magee first to see the Browns and go to church with them. We had a nice visit and Desi got to meet more of his extended family. We stayed for lunch and Desi ate his weight in some delicious greens that Rhonda cooked.

Afterward, we headed on down to Metairie and stayed with my aunts Nancy and Jess and their grandkids Loraine and Gio. Desi really enjoyed playing with his cousins and took a liking to Nancy.

Monday we went into the city and hung out with my friend, Sammie, her giant son Spencer and her nephew Mani. We ate some awesome shrimp po-boys and then Desi and I headed back to Nancy's house so he could get a good nap before his appointment at the children's hospital. It was pouring down rain like nothing I have ever seen in Vicksburg. I had forgotten it could rain like that.

So I continue to Nancy's house despite her warning that her street floods during a hard rain. Desi was already asleep and how bad could it really be, right? I get to her house and put him in the bed. Ten minutes later I look out the window to see water covering the street in front of the house. I knew if I didn't leave then we would be stuck in the house and miss the appointment we had driven all this way for. I loaded Desi back I to the car in the pouring rain. He was such a trooper and stayed asleep through all of this. As we left the neighborhood I drove through the highest water I have ever had to before. I drove past garbage cans floating down the street and almost stalled out more than once. We got out of the neighborhood and ended up in crazy traffic on Jefferson Highway. It was a good thing we left when we did be wise we ended up getting there right on time.

At the appointment, which we didn't have to wait forever for, we got to meet the very kind Mary Ellen, the neurosurgeon, Dr. McBride, and the plastic surgeon, Dr. Hilaire. They all came and sat in the exam room with us and answered ALL of my questions. I was afraid that since it was an appointment late in the day that we would be rushed through it all but it was not so. They took their time and let me take mine.

The best news of all is that they are going to do the surgery and it's a different procedure than they had been planning on doing at UMC. In Jackson, they were going to basically remove parts of Desi's skull that have been misshapen by the growth of his brain in the wrong directions and reshape them. They would then put them back together in his head using plates and screws. The surgery would have lasted about 6.5 hours and he would have spent at least one day in the ICU and a total of about a week in the hospital.

The surgery they proposed doing at New Orleans Children's Hospital is a lot less intense. It would not involve any hardware. Dr. McBride and Dr. Hilaire said they would simply go in and remove the suture that has prematurely closed and then some strips along the sides of his head as well. They said that would be about it and that from there nature will do the rest. Desmond's brain will have room to grow the way it is supposed to and his skull will reshape with that growth. This surgery will only take about 1.5 hours, he may not even have to go to the ICU and he will only be in the hospital for three or four days. They said they have had a 100 percent success rate with this surgery and that none of their patients have had to have second surgeries. Can you say impressed!!!!

I can't tell you how relieved I am after all of the mess we've been through I feel like this is where we should have been from the very beginning. They are very busy, but they said they would fit his surgery in in the next few weeks. The only bad part of the visit to the hospital was that Desi had to have blood drawn to determine his blood type. Since he was born at home, we never had the blood work done that they normally do from the cord blood. It took them five times of inserting the needle to finally get a vein. The poor boy was beside himself and I felt so bad for holding him down. But, it was all for good, because now we know that he is A+ and so am I. I know that the blood at the blood bank is just as good as my own, but I feel better knowing that he is getting my blood if he needs a blood transfusion.

Overall, it was a fantastic weekend. We finished out our trip to the Big Easy with some beignets and a Café Au Lait at Cafe Du Monde. Well, Desi didn't have any, but he enjoyed the atmosphere!


Then we strolled through the market and bought a souvenir to commemorate the trip. Don't think I'm crazy for buying a voodoo skull for Desi, he picked it out himself. I thought it was rather appropriate too since we were there because of his skull.


When we finally got home we stopped in to see Grady and had a wonderful visit with Lauchlin and Olivia. I really feel so lucky to have such wonderful friends in mine and Desi's life over the last year. I hope I can be as much help and support to them as they have been to us.


Can you tell I'm sappy and happy?

Location:New Orleans, La.

Swim Lessons

So, I have fallen terribly behind in my blog duties and I apologize. Summer time is busy time. So much is going on right now I guess it's kind of overwhelming to try to blog about it all. Yesterday was Desi's first birthday, but I will write all about it after his party tomorrow.

The most exciting this so far this summer was swim lessons! We signed up for the Mommy and Me lessons at the Vicksburg City Pool. Pay only $12 and you get two weeks of lessons. We only made it to one full week and one day out of the second week, but it was still well worth it. I borrowed a waterproof camera from my friend/neighbor/coworker, David, and shot these on Funday Friday. We didn't have a real lesson, but Desi still practiced almost everything we had learned earlier in the week.

The main point of the lessons for Desmond at this age is to just get him used to the water so he won't be scared of it and learning safety. Well, I knew he wouldn't really have any trouble liking the water since he has a blast every night in the bath. I was right. He took to it like fish in the water.

He blew bubbles with his mouth and drank and choked on lots of water. But in the end all was well.

We had lots of fun in the sun. Mommy got a little more red and Desi got a lot more brown!

Desi got used to balancing in the water by chasing soccer balls and floaty toys.

We ran under the mushroom fountain and Desi was intrigued.

My favorite photo of all. Desmond kind of goes into this Zen mode in the water and holds his head up and his arms back almost like a yoga position. I feel like he thinks if I let go he will fly away.

Oh Boy

Well, Desmond is just growing and growing and growing. I wouldn't be surprised if he took his first steps before his birthday. He pulls up on everything and is cruising about like a pro.

 Look at all those teeth! And of course that crazy hair!

He is also using that voice of his, for good and for bad. He jabbers away almost constantly. Everything starts with a "d" and more than just Carmela are called "dog" or "doggie." I've been trying to work with him on saying "more" when he wants more food instead of screeching or grunting at me, but so far no success...it doesn't start with a "d."

He has started to throw "baby" tantrums. I call them "baby" because I've read that babies his age don't throw actual tantrums, they just show their frustration in what might seem like a tantrum. (Sounds like a tantrum to me!) He's become obsessed with hair. Whether it's his own that he's pulling out, mine or Carmela's that he picks up off the floor, he doesn't want to let it go.

Speaking of hair, get a look at those curls!

I will have just vacuumed and I'll look down and he's found the one little ball of Carmela hair in the entire apartment and will be holding on to it for dear life. When I take it away and tell him "yuck" he screams and cries and throws a "baby"...oh hell I'll call it what it is...a tantrum. I don't know what it is about hair, but he loves it. He pulls his own hair as a self comforting thing when he's tired. He will also sometimes grab a fist full when he is mad about something. And then there's mine. He grabs and pulls at it so much I can't wear it down even in the rare few moments of the day that it's not too hot to.

Last week we had a brief but wonderful visit from Ann Lowney all the way from Ireland. It was so nice to see her again. Ann visited us last year at this exact time. I guess I should say she visited me because I hadn't had Desmond yet. He was born three weeks later. She was very glad to meet the little guy finally.  The next time she breezes through Mississippi he will be running around and talking!

 They got along from the very start.