The Endoscopy December 4, 2009

I’m finding that blogging about our trials and tribulations is rather cathartic these days. Here’s our latest installment…

Miles has eosinophilic esophagitis. Just another chronic allergy issue that we deal with. EE, like all other allergic diseases, is on the rise. The numbers in children are dramatically increasing. Miles seems to have hit the jackpot in terms of how many allergies he has. Note to self: start playing the lotto.

Lucky for us, his EE hasn’t caused the multitude of problems that it has caused in other kids. He’s never had failure to thrive. He has never had a difficult time swallowing food. And, most importantly, he’s never complained of any pain. That’s not to say that he has never been in pain. Some kids are simply used to the pain because they’ve always been in pain, they know no different. I hope that this isn’t the case with Miles but I may never know. The biggest indicator we had that there was eosinophilic activity was the fact that he was allergic so many foods along with the fact that I suspected silent reflux. To the GI doc we went.

Miles had his first scope when he was 2.5. It was NO fun. I realize that it’s a pretty routine procedure. People, kids, have endoscopies all the time. But, for my baby, it was traumatic. He was diagnosed with moderate EE. I wasn’t too happy with the doc that had diagnosed us and because he was mainly asymptomatic, and along with the advice of my pediatrician and allergist, we didn’t do much to treat it. The treatments for EE range from medication (reflux meds and swallowed steroids) to more extreme treatments for severe kids, including feeding tubes and elemental formula liquid-only diets. 

Earlier this year we went to a new GI doc, whom I really liked. I had been referred to him by several other moms of EE kids. Finding a doc, even a GI doc, who is really familiar with EE is a difficult feat. But we found him! Instead of blindly throwing a bunch of precriptions our way, he carefully reviewed Miles’ past endoscopy and recommended a new scope be performed. Ugh, I was afraid of that recommendation. Unfortunately, Miles overheard the docs recommendation and was instantly petrified. Because of various reasons, we were unable to schedule the scope for 6 months, and Miles talked about it alllll the time. Poor guy.

Today was the day. I didn’t tell him about it until we were on our way to the hospital at the crack of dawn. I didn’t want him to be fraught with worry the night before. Like his mommy who was unable to sleep! The big boys stayed at home and were watched by friends while we took Miles to TX Children’s Hospital. Once he realized where we were going, he got really upset. I tried to calm him down, distracting him, talking to him, holding his hand, putting his favorite movie on. To no avail. He was simply terrified. I told him it was ok to be scared but he still cried, almost the whole way there. Which was over an hour away.

Once we got there, we checked into the GI procedure suite. Miles got weighed and his temp was taken. He wasn’t talking to the nurse, who was asking him questions. This is unusual behavior for Mr. Outgoing. Understandably, he didn’t have anything to say to the nurse. We proceded into the area where they prep. He hadn’t had anything to eat or drink since the night before and thankfully, he didn’t even ask for anything. We went over paperwork with the nurse. I mentioned to her how nervous Miles was about the scope. At this time he was watching Scooby Doo on the portable DVD player that we brought with us. That was really helpful. The nurse mentioned that she wanted to give him Versed to help him relax so they could get the IV in. He took the meds like a champ, like he always does. Such a trooper. The nurse gave him some time to get loopy with the meds.

I’ve never seen any of my boys on sedation meds. I can tell you from this experience, I don’t like it one bit. Miles was indeed relaxed. But he was so drugged up that he couldn’t communicate with me. I know that feeling well.

The one and only time that happened to me I was in labor with Blake and given “a little something to take the edge off”. That was Demerol. And it didn’t take the edge off. I felt every pitocin induced, strapped to my labor bed with an internal fetal monitor contraction. But instead of being present to deal with my labor, I was high as a kite. Floating in the clouds. Feeling every ounce of pain but unable to communicate how much it hurt. It was the worst feeling in the world. I had my next two babies without any pain medication at all.

And here was my sweet son. His head was bobbing up in down, his eyes only half open. He kept trying to talk but the words came out jumbled. He was able to shake his head yes and no on occasion. It was really hard for me to see him so doped up. Not sure why, it just was. The nurses decided it was time to stick him. They needed to get an IV into him for the procedure. They searched his arms and hands, over and over, looking for a suitable vein. They kept putting the rubber band on his arms and smacking them, hoping a throbbing vein would surface. Miles kept pulling away. The nurses mentioned several times how surprised they were that he was resisting so much, with all the medication. I secretly knew why. He is a strong little boy, NOT to be underestimated. As much as I didn’t like to see him fight, I was also glad that his strong spirit made it’s presence known.

They finally gave up on the hands or arms. Once one of the nurses removed a sock, she announced that the ankle vein was speaking to her. She sprayed the numbing spray. They held him down. And they stuck him. One of the things that I love about being at TX Children’s is that they are incredibly accomodating. They didn’t make Miles change out of his comfy jammies. They also let me hold him whenever I wanted. So there I sat on the bed, holding my son as they attempted to place the IV. He cried, he cried, he cried. I held it together for him. I held him and squeezed him and comforted him as best I could. But he was squirming and the vein blew. So they had to try again, this time on the other ankle. So, I held him tight, reassured him and told him that he needed to stay still so they wouldn’t have to poke him again. He cried. I couldn’t hold back the tears at this point. My tears fell directly into his hair, at the top of his head. I apologized to him, that he had to go through this. I was flashing back to his visit to the ER for the seizure where he was poked repeatedly. I wasn’t about to let that happen to him again. Luckily, this one took and it was over.

I signed up Miles to participate in a research study. Since he was going to have an open vein anyway, it would be non-invasive. All that was needed was a blood sample. The hope is that in the future, they will have a standard blood test that will be able to give the same info that an endoscopy would provide, but with a simple blood test. I was asked to participate by my allergist. All I could envision is all the kids that we could possibly help to avoid going through this torture of an endoscopy. I was happy to help! It was wonderful seeing my allergist during the prep for the scope. I really respect her as a physician, she is the medical advisor for my food allergy support group, SAFER Houston,  and she has 4 kids of her own. She is warm, caring, and dedicated to helping kids with food allergies. She came to say hi to us and leave the vials for the blood to be collected. Seeing her familiar, smiling face was very comforting. She told me that Miles was the very first patient to participate. How exciting! Whether or not our sample will be instrumental to the development of a blood test, I’m so happy that we were able to participate and contribute. After all, helping others is what I love to do!

It was time for the procedure. I was still holding Miles on my lap and we were wheeled into the procedure room. The doc came to give more sedation meds. He took the time to take some pictures of Miles with the camera that they do the scope with. He saved them and later printed them out, so that Miles could see himself. I thought that was really thoughtful and I appreciated that. Soon it was time for me to give him a kiss and wait in the waiting room. Right before I left, I got off the bed and laid him down. He asked me if I was leaving. I told him that I wasn’t, that I was just getting up to stand next to his bed. And that’s what I did, for a while. He asked me if I was going to stay while they took pictures of his tummy. I didn’t answer him, I didn’t have the heart to tell him the truth and I didn’t want to lie to him. I waited until he was totally out. They escorted me out, to the waiting room, and I couldn’t stop the tears from rolling down my cheeks.

In the waiting room I saw an awful sight. The room was filled with 2 families that were waiting to have GI procedures done. One was an 8 year old boy. The other was a 1 year old boy. The mom of the 1 year old obviously didn’t want to be there. Well, neither did I, quite frankly! But she kept scolding her little boy, who had an oxygen tube taped to his face. She wanted him to sit still in his stroller. Obviously he wanted to climb out. As she scolded him repeatedly I started to feel nauseated. I was so worried about Miles and the fact that the minutes felt like days passing, and this mom was scolding and threatening her baby who obviously had health issues and was about to undergo a procedure that I’m sure was similar to Miles’. It made me sick. I’m by NO means a perfect parent. But I really can’t stand the way some people talk to their kids. And, apparently, I wasn’t in a compassionate mood towards this mom whose baby was happily smiling and babbling and simply trying to get out of the contraption he had been placed in. I couldn’t even look at her. Is that terrible, or what? She was called back to the prep area and I could hear her through the doors scolding her baby. THROUGH THE DOORS!!! Steve had stepped out to call the boys and check on them and when he returned I had to tell him all about this other mom and how could she do that to her baby and how awful it was to witness etc. He begged me to calm down LOL!

After what seemed like an eternity, but was only 20 minutes, the doctor invited us into an office to let us know that the procedure went wonderfully and Miles did great. I really wanted to talk to him, I like to ask a million questions, but I was so super anxious how Miles was doing. I really wanted to be there when he “woke up”. Last time he came out of anesthesia without me there and he freaked out. I could hear him screaming for me through 2 sets of doors, all the way into the waiting room. Granted, he was younger and was under general anesthesia, but I didn’t want a repeat of that experience! Basically, the doc said that there was still furrowing I don’t know why but I was really hoping for a miracle. I didn’t even realize it until that point as I’d been so focused on the procedure itself. But, essentially, there is still damage in Miles’ esophagus. He still has EE. We won’t know the extent or be able to develop a treatment plan until the biopsies come back from pathology, sometime next week. He had several tissue samples taken to see the eosinophil count. The wonderful thing about this doctor is that he’s very personable, and smart. Caring AND clinical. We discussed some options and he said that we would cover them when he gets the results. He also printed out the pics from the scope and the pics that he took of Miles right before the scope. He gave me lots of copies of everything, including his procedure report. Can I just say? Night and DAY between the other doctor that we saw. I really really like the doc we are seeing.

I was FINALLY able to see Miles, after what seemed like an eternity. And here I go crying again after seeing him curled up in a little ball, sleeping while induced by versed and ketamine. The nurse we had in recovery was awesome!!! I really need to write a letter to the hospital. I’m pretty sure it was the same nurse we had the last time, who was so incredibly supportive of my breastfeeding my 2.5 yr old. He was great, took lots of time and answered all of our questions. Did I mention that I ask a LOT of questions? He was kind and compassionate, funny and thorough. Once Miles started to wake up, I was standing on the side of the bed, leaning over him. Miles kept pulling me towards him. I knew exactly what he wanted, he wanted me to hold him. The nurse said absolutely!!!!! He lifted Miles over to me, put pillows up to protect the floppy head and was just amazing. When Miles finally was coming to and refused to drink water, the nurse respected that and totally understood. It’s the small things like that which matter to me. He was amazing.

Miles came too and was pretty loopy for a while. We left the hospital as the snow started falling for the earliest time in Houston history, and the first time we’ve experienced snow in Houston. Miles really loved watching it come down. He’s been doing great all day. I’m so glad that it’s over, for the time being. I can’t wait to snuggle him to sleep!

I know that many kids would choose something as simple as a scope anyday over the chemo or surgeries that they have to go through. I’m not really sure why I feel the need to get this out there. Therapy? A record of the past that I can look back upon? I like to think that while it really sucks what Miles has had to go through in these past 5 years, and the effect that it’s had on me as a mother. I like to think that it’s just the price we have to pay to keep him safe and healthy. And I’m willing to pay whatever price I have to, just to know him. He IS a special kid. Crazy and fun. Sweet and fierce. I love my Miles. I wouldn’t trade him for anything.

Miles’ Third Year November 20, 2009

Call me crazy but I LOVE two year olds! It’s seriously my favorite age! Two year olds are fun, inquisitive, adventurous and sweet. At 2 years old Miles was all of those things.

We had a big birthday party at our house for Miles’ second birthday. I was getting better at making safe food for him every day and I made all of the food for the party. We had all the kids wash their hands as soon as they came in. We rented a bounce house for the backyard. It was a huge, reaction-free success. Miles had so much fun and so did everyone! I was so happy to have all of our family, new friends and neighbors over to celebrate Miles. Everyone just loved him to pieces and I felt like we had both successfully survived two years. And that was something to celebrate!

Miles continued his obsession with all things fire fighter related. He insisted on wearing his fire fighter costume wherever we went, long after Halloween. He also still wanted to wear it to sleep. I finally convinced him, somehow, that fire fighters didn’t wear their jackets and helmets when they went to sleep. So we hung them up at night, just like real fire fighters.

Despite all of his allergies, Miles continued to grow and thrive! I learned to cook some really yummy meals and as a family, I think we had adapted pretty well. There were still times where he had mystery hives from who knows what. We spent a lot of time at home, in our house. Miles watched much more TV than either of my older boys at that age. But he loved watching movies and he was safe. We played a lot too, but we didn’t go many places. If we went somewhere, it was risking a reaction. Most days, it just wasn’t worth it. We still battled the eczema. Some days were better than others. We still had itch fests at night. Between ages two and three the facial eczema finally started to clear up. I honestly didn’t know if it ever would! But, it did and for that I was sooooo grateful.

Because of the sweat and heat induced hives summer time is rough on us. We tried a couple of different kinds of antihistamines, but none of them seemed to help. Because of his allergies, we didn’t spend any time outside at all during the summer unless we were at the pool. Miles LOVED the pool! He loved the slide, he loved playing in the water. He loved being outside at the pool in the summer. We had a great pool for kids in our neighborhood, and we took full advantage of it, often going several times a week. We usually went after naptime, about 4 pm. I can’t use sunscreen on his sensitive skin, so we had to go when the sun wasn’t at it’s peak. There was always food around, peanut shells, kids eating PB&J, those evil goldfish crackers, etc. But we were careful, we brought our own food and I always draped towels all over Mile’s pool chairs. He never had a reaction at the pool. It was our saving grace in the summer.

That summer, Miles began a new obsession. Not to overtake his love of all things fire fighter. No, just to add to the list! He became obsessed with Spiderman! He wanted to watch Spiderman, all of them, over and over again. He just loved the battle between the good guys and the bad guys. He never got into any other super hero, but boy did he love Spidey. In fact, he started insisting on wearing his Spiderman pajamas everywhere. He can’t do the regular polyester costumes because of his skin. The eczema won’t tolerate it. So I bought him Spiderman PJ’s and he insisted on wearing them everywhere. The grocery store, the library, even the Day Out With Thomas train tour that we drove to Austin for!

Miles was so funny! He made us laugh all the time. Miles could make anyone smile. And he loves to talk. He will talk your ear off. At two years old most of the conversation was about fire fighters and Spiderman. But he was an engaging little guy and would talk to anyone who would listen. He still will!

Happy Birthday Miles!!! November 19, 2009

Yesterday, on Novemeber 18th, Miles turned 5 years old!

The day started in the same way all of our other days begin. He snuggled in bed with mommy! It’s something I look forward to every day. You can say that I’m guilty for babying my baby. I am! And he eats it right up!!!

We talked about his birthday. He was so excited he started jumping all over the bed saying “It’s my birthday!!!!”. So sweet! We had to get ready so that we could take Lance to his reading lesson, which is an hour from our house. So, we woke up the other boys. They were both so sweet and wished Miles a happy birthday. Miles was just beaming with pride. I had promised to play Halo with him and so we did. I’m not a big gamer, unless it’s Guitar Hero. Then, I ROCK! But for my sweet Miles, on his birthday, I’ll do anything! He only killed me twice, he went easy on me:)

Birthdays are a BIG deal in our house. We always spoil our kids on their birthdays. Usually Steve takes the day off of work and we plan a secret surprise for the birthday boy. I distinctly remember on Lance’s 5th birthday we took him to the Lionel Train Mueseum, as he’s an avid train lover. But this year Steve was out of town and I was still recovering from the galbladder attack I had two nights prior, so I wasn’t feeling that great. We tried to make the best of it, though.

I gave Miles the first installement of his presents. We always let the boys open the gifts from us in the morning. Usually it’s a big pile but Miles only had 2 small gifts because his big gift was coming later that night after daddy got home. Miles received a small Halo figure set and a new Power Ranger’s DVD.

After we dropped Lance off at his reading lesson, we had an hour to kill. Naturally, we went to Toys ‘R Us! I let him pick out a couple of toys, which was loads of fun. It’s not every day that a kid gets to go to Toys ‘R Us and pick out whatever they want, within reason, of course! Especially my kids cause I HATE that store and avoid it as much as I can! So he picked out a Star Wars clone trooper costume with a helmet (he loves to dress up and be in character!) and a Halo Master Chief dude from Mega Blocks. We picked up Lance, and went to Target to exchange the Power Rangers DVD that I specifically bought so that Miles could watch a new movie on the long drive to and from Lance’s reading lesson. After we tried to play it, we realized that it was severely scratched so we exchanged it on the way home and all was well with the world.

At home, I made lunch. Chili for Miles, which is a favorite of his!

Lance helped me bake Miles’ cake. Usually I make cupcakes for him but this year he said that he wanted a BIG cake! So a big cake is what I made! Lance is addicted to all of the cake shows. Ace of Cakes, The Cake Boss, the Food Network Cake Challenges etc. So he had lots of suggestions and was quick to point out all of the things that I could be doing better like they do on TV. Thanks. Lance really thinks we need a cake stand. OK. I’ll put that on MY Christmas list! I made a layered round cake, which was really a disaster. The actual cakes came out fine but the frosting I made was really fluffy and slippery and kept sliding off the cake. Then I ran out of frosting and realized I was also out of palm shortening. So I had to pack Miles up and go to the grocery store. Which was NOT on his list of fun places to go on his birthday. We got the shortening, made more frosting, and continued making the disaterous cake. It would have to wait until after dinner to eat. Which is light years away, in little kid years. I found Miles sampling the goods!

Daddy came home and we went to dinner at Red Robin, one of the only places that Miles can eat anything. The Red Robin by us has a dedicated french fry fryer and safe fries so that’s what Miles got for his birthday dinner. French fries!

After dinner it was time to get the BIG gift we had been talking about all day.

A new trampoline!!! We had a trampoline when we lived at our old house, but a tree fell on it during Hurricane Ike. We never replaced it as we knew we were moving, so it was time. Miles, and Blake and Lance, were soooo excited! We can’t wait to put it up in our new backyard!

Back home we went. Time for cake! As you can see from the pics, the cake was a wreck. I had visions of his first real cake being beautifully decorated, icing piped everywhere, peaks of “butter”cream frosting. But, it didn’t turn out quite as I had envisioned. Miles didn’t care one bit and the cake was still SUPER yummy. I must say, despite all of the allergies, I’ve perfected the allergy free cakes. They are every bit as good as the toxic ones:) Maybe even better!

And now a note to my sweet, perfect little boy, should he ever read this one day.

Dear Miles,

Happy 5th Birthday! I hope you had as much fun as I did celebrating with you. The last 5 years together haven’t always been easy. We’ve learned together and grown together. You have taught me as much as I have taught you, maybe more. Thanks for being such a wonderful son. I’m so lucky to know you. You are so incredibly funny, precious, sweet, adventurous, smart, adorable, compassionate, caring, FUN!, and just plain perfect. You will always be my baby, no matter how big you get. And I love you more than you will ever know. Until the end of time.

Love, mom

Miles’ Second Year November 18, 2009

When Miles turned one, he didn’t have a conventional cake. You know, the one that all babies get when they are one? A small, personal cake that they can dig their chubby fingers into and smear on their faces? Miles didn’t have one of those. He had a mound of mashed avacado. And he really didn’t care about eating it, either. He enjoyed the candle though!

Miles didn’t have another round of allergy testing until he was 14 months. He also learned to walk at 14 months. His allergy testing was a skin test, and we got the results immediately. Off the charts reactions to peanut, milk, wheat and egg. Postives on all the others, fish, shellfish, tree nuts, corn and soy. He was also tested for some individual environmentals. Dog (positive) cat (positive) dustmite (positive) cockroach (positive) alterneria mold (positive), you get the picture. I actually can’t remember all that he was allergic to. The consensus was to put him in a plastic bubble. Just kidding! Although it’s not such a bad idea, we still need to try to lead a normal life!

I realized, through a website called Kids With Food Allergies, that an elimination diet was in order. If I wanted to continue breastfeeding, which I did. So I cut out all of his known allergens out of my diet and some of the suspects. I was eating a lot of rice. He was eating a lot of rice. His eczema was getting worse. For a while I didn’t make the connection, but finally, after going through my food journals, I realized that he was reacting to the rice. Once I pulled it out of our diets, he improved dramatically! The lightbulb went off in my head. I now realized why his eczema never improved when I did an elimination diet when he was an infant. It was because I was eating TONS of rice!

I couldn’t believe the difference in Miles’ skin after I went on the elimination diet. It was really really tough for me. I couldn’t put our whole family on such a strict diet. So that meant that I had to keep cooking and feeding my other kids super yummy food and I couldn’t eat it. Not even a nibble. But this was my baby and I was committed to his health, at any cost. And I’m glad that I perservered. He’s never been diagnosed with failure to thrive. I’ve never been worried about him getting the proper nutrients. I knew that as long as he was breastfeeding, he would be fine. And he continued to grow and thrive!

At some point around this time, I decided to go to Whole Foods to shop for “safe” allergy free foods. I really wanted some foods that I didn’t have to cook and bake from scratch. While we were at Whole Foods, I picked up a box of cookies that were wheat free. Miles was in the mai tai (did I mention that I always carried him?) and he was getting fussy. It was near nap time and we were almost done shopping. I read the ingredients and there weren’t any of the allergens he’d been tested for, so I opened up the box and gave him a cookie. He took 2 bites of it and refused the rest. I figured he didn’t like it. About 5 minutes later, while we were in the check out lane he started to cry and cry. This was unusual for him but I thought maybe he was just tired for his nap. Another minute later, his nose started running, literally like a faucet. I’ve never seen anything like it before. He was getting sick, that’s why he’s so fussy, I thought. I quickly got him into the car, started driving. I wanted to get him home so he could get a good nap. He was still really fussy and about 15 minutes into our drive I pulled over to see what I could do to help him calm down. That’s when I saw the hives. They were everywhere. I didn’t know what to do, I had an epi pen but I wasn’t sure if I was supposed to use it. And I had benedryl but no teaspoon dropper. So I drove home as fast as I could, gave him the benadryl and ran to the neighbor’s house who is a doctor. By the time I got home he was wheezing, I was terrified, but the benadryl worked quickly and our neighbor said he was ok at that time. This was his first anaphylactic reaction. We should’ve used the epi pen but didn’t. We were so lucky. The culprit: barley.

Miles still battled eczema but couldn’t take the soak and seal baths anymore. When he sat in the bathtub for any length of time, he developed tiny hives, all over the trunk of his body. Cold induced hives. Lovely. So we took showers. We also realized that when he got too hot, he developed tiny hives on his neck and chest. Heat induced hives. Wonderful. And the kicker. Whenever his sweat sat on his skin, or he cried and rubbed his eyes, hives. Big, welt like hives. A rare aquagenic hives condition. Fabulous.

He also started having contact reactions to the foods he was allergic to. When any of the offending foods came in contact with his skin, even trace amounts, he would have a reaction. Sometimes just a mild one, sometimes a pretty scary one. I felt like everytime we left the house, we were playing in a minefield! Where was that plastic bubble? Such a challenge with a toddler who is driven and compelled to explore and learn. Home was our safe haven. We started requiring all kids to wash their hands upon entering our house. There were many times that he got random hives from simply being in the grocery store, without even touching anything.

Food was our enemy. Nothing made me more sad than watching other people feed their kids. Especially when almost all kid friendly food was poison for my son. Goldfish might as well have been a loaded gun. Parties? Social gatherings? Parks? Block parties? Forget it. It was scary, terrifying and my anxiety continued to dominate my life as I struggled to provide some normalcy for our family.

My older boys were awesome. They learned to read labels. They were an extra set of eyes, helping to locate offending food. They also gave up a lot. No more eating out wherever we wanted. No more trips to the ice cream store. No more pizza nights. No more eating snacks in the car, unless they were Miles safe. Constant handwashing. Eating allergens ONLY at the island in our kitchen. The change in their life was drastic. And they were amazing. I am forever proud of their compassion and understanding.

Miles ate a LOT of potato chips. I basically couldn’t bake anything for him, except for a type of cookie that I invented called cold cookies. They were cinnamon cookies made from sugar, salt, olive oil, baking soda, potato flour, potato starch and cinnamon. Miles called them cold cookies because I would keep them in the freezer to keep them fresh. I cooked everything from scratch.

Ahhhh, enough about the allergies and the challenges. I want to reminisce about the sweet baby that I had the honor of mothering. Miles has an amazing spirit. Anyone that knows him would agree! He is so much fun! A pure joy to be around. At this time in his life he was obsessed with all things fire fighter related. He loved the fire trucks but especially the fire fighter uniform. When he was almost 2 I bought him his first fire fighter costume. It was 100% cotton, safe for his skin, and super cute. From the moment I got it, he wanted to wear it all the time. Literally. He would cry and cry if I tried to take it off, even just to get his pajamas on! The only way he would stop crying was if I put it right back on. I would sneak it off him again once asleep. He was so adorable:)

Despite all stress of raising a severely allergic child, I thoroughly enjoyed every minute of his second year. There is just something about babies that I find irresistable. Miles was no exception. I worked tirelessly to keep him safe. And I snuggled him every chance I got.

Miles’ First Year November 16, 2009

After a difficult pregnancy and birth, I was beyond excited to thoroughly enjoy what would be my last baby. Miles was here, I could eat again and life was perfect. Because there was so many years in between the older boys and Miles, we didn’t have any issues with the transition from 2 to 3. My only complaint with the babymoon phase was the intense pain I felt every time I was upright or walking. Slowly the pain subsided and by 8 weeks postpartum, I could barely feel the fracture in my pelvis. I still wasn’t even sure what was causing so much pain. I didn’t see a dr for it, just suffered through it. Really, it was a minor inconvenience and I didn’t think much of it. I focused solely on the absolutely perfect little baby that rarely left my arms.

He was born in November, in Michigan where the winter was just gearing up. Miles was a high needs baby. He wouldn’t sleep without me holding him. He needed constant touch. I didn’t think much of it, my middle son was also high needs and I simply took his lead. I did this with Miles also. When he was about 6 weeks old he started to develop what looked like baby acne, more prevalent on one side of his face. I used cetaphil soap and moisturizer on it. It would wax and wane, and I really didn’t give it much thought. It wasn’t until I was at a friend’s house, my dear Leslie, and another friend of ours was there. Her son had severe eczema and she told me that her son’s eczema first developed on his cheeks and he would run them against her while she held him. OMG. My heart sank. That is exactly what Miles was doing. He was about 3 months old at the time.

Big brother Blake, 7.5, and newborn Miles

Miles and Santa at 2 weeks

I was no stranger to eczema. It runs in my family, and although I never had it, Blake did. Just the small patches beginning at 6 months in the typical areas. Behind the knees and elbows, on his wrist and under his earlobes. The eczema severity peaked when he was 2-3 yrs old and was what I would call moderate. I put the steroid cream on him sparingly, only when the spots were bothering him. By the time he was 5 it was completely gone. Now that he’s 12 he does have some random spots on his belly but they are mild and don’t bother him one bit.

Miles’ eczema seemed really different than what Blake had experienced. It was mainly on his cheeks at 3 months and I used hydrocortisone on the spots, which would clear them up for a day or so. They would then return with a vengeance. I hated to use the cream on my sweet new baby. I ordered some “miracle” cream from Australia that was very costly and took 3 weeks to get here. Based on the customer reviews, I was sure that this was our cure. We were going through a dry, cold winter and we had the dry heating to contend with. His skin was probably just dry.

 By 4 months the eczema had spread to his legs and arms, stomach and back. It looked so uncomfortable to me. Miles continued to be super high needs. He didn’t only want to be held all the time, he also needed bouncing. Constantly, when he was sleeping. That was the only way he could sleep. If I stopped moving, he would wake up and he was in misery.

I frantically tried everything I could think of to get rid of the eczema. Obviously the miracle cream didn’t work for us! I was already using all organic and natural cleaners and detergents for us. I had been for years. But I read somewhere online that a child was allergic to detergents themselves. So I bought all pure soap products and began a super human washing campaign. Washing his clothes and mine for 10 cycles in a row, to remove the detergent residues. Washing everything in my cabinets by hand, in the new soap. I also started the soak and seal baths. I needed help to wash him so Steve would sit in the tub with him and try not to let him touch his skin anywhere, otherwise it would result in an itch-fest. He had already learned how to scratch himself bloody. After the 20 minute bath, we slathered him with greasy aquaphor. We often did this 3 times a day. I started an elimination diet as I was breastfeeding him. I was eating rice, chicken, pears, yellow squash and zucchini. It was torture.

The eczema did improve, but it didn’t go away. I did the elimination diet for 6 weeks and saw little improvement. The best improvement I saw was with the soak and seal baths. I assumed that food wasn’t a trigger for him and ate whatever I wanted in terms of allergies. At night he had to be swaddled tightly so he wouldn’t itch his cheeks. I safety pinned socks over his hands and put him in all cotton sleepers. When he was in the carseat, I had to tuck his hands down with a big piece of fabric. If he was able to reach his cheeks, an itch-fest would ensue. He lived like this for all of his infancy. Taking care of his skin was a full time job. I don’t even remember seeing my big kids very much during that time.

Miles, 4 mos, being held by me in the sling at Blake and Lance’s birthday party, early March 2005.

I continued to try and deal with the eczema naturally. I’m not one to rush to antibiotics and tylenol every time my kids are sick. If they need those things, I by all means will give them. But, usually they don’t. I hated to use the steroid cream on Miles. I did, if the spots were red and angry. The problem was that the eczema was spreading. And it kept getting worse. I took him to a classical homeopath and spent a fortune on visits and remedies. I took him to a nathuropath and we did neuromodulation techniques and applied kinesiology. I took him to different pediatricians. Their advice was always different from the one before. I was lost. Overwhelmed and severely depressed. I was in a dark place. This was not my dream of having my third baby, spaced far enough from my other kids so that I could cherish every quick-to-pass moment. Instead I was experiencing sheer hell with a baby who was miserable. And I was helpless and couldn’t seem to do anything to take it away for him.

I really truly thought that with the spring, the warmth and the moisture, that his skin would improve. Sadly, it didn’t. He was almost 5 months old when these pictures were taken. It was Easter.

The eczema was now covering 98% of his body. It was on his scalp, eyelids, in his ears, on the bottoms of his feet. The eczema on his cheeks, arms and legs would ooze fluid and blood. His clothes would stick to his skin. He looked like the top layer of his skin had been removed. He looked like a burn victim. He looked so bad that strangers would peek into my sling to see my sweet little baby and curl away in horror, asking what on earth had happened to him. He was suffering. No baby should ever have to suffer like that. It still kills me to think of what he went through during that time. The misery. The uncomfortableness being in his own skin. I’ve read reports of people committing suicide because of their severe eczema. They just can’t take it anymore. Awful.

The day after the above pictures were taken I took him to a dermatologist. She put him on 2 weeks of oral steroids. Overnight all the eczema cleared up. I knew it was going to come back but I was glad to have a couple of weeks of relief. What a change in his demeanor we experienced. He was such a happy baby. I could relax for a minute. But all of the emotions that I’d been pushing away, the fear, the anxiety, the sense of hopelessness. They came to the surface. I was an emotional wreck. I was exhausted. And I’ve never felt more alone.

The eczema did come back, but not nearly as bad. He’s never had another full body flare like that. He would get angry spots that bothered him and I learned to embrace the steroid cream. We used cutivate, sparingly, only on the spots that needed it. Cutivate was the only cream that had been studied on infants for safety. Despite my entire world crumbling before my eyes and all around me, I still found time to research.

When he was almost 6 months old we received more devatating news. Skin infections are common in kids with eczema. They diagnosed him with a wicked vial infection. More dr visits, pediatric opthamology visits. A month of antiviral meds and antibiotics. I would have to force the meds into him while sobbing and apologizing. The skin around his eye looked so bad. People would stare. I’ve never been so scared in all my life. The viral infection would break out, full body, throughout his life and he would spend weeks in the hospital recovering. All I could do for weeks was cry.

The infection subsided and the eczema remained manageable with due diligence. He still had spots all over and they were really itchy. But it was nothing like we had experienced before.

He would have to wear these all cotton pilot caps from Hanna Annderson when I was treating his scalp.

When he was 9 months old we moved away from most of our friends and family all the way to Houston, TX. I was curious to see how his skin would react to the change in climate. It stayed pretty much the same. Random flare ups, treating agressively with cutivate steroid cream when he did have a flare and daily soak and seal baths. By now we were using vanicream, a pharmacy grade compounding cream. His skin tolerated it really well.

The move was hard on all of us. We moved in with my dad while we searched for a house. My dad’s wife thoughtfully cleaned the carpeting before we got there. Unfortunately, I wanted to keep Miles away from the chemicals so I had to purchase sheets to lay all around the room that we were staying in. I creatively made a “fence” with toyboxes. No one was allowed to wear their shoes on the sheets in the room. Everyone would be required to “decontaminate” before entering. I didn’t feel comfortable cooking in my dad’s kitchen. I had no where to set Miles while I was cooking as the whole house was contaminated with chemicals. So we ate at restaurants. For every meal.

I was still nursing Miles and eating whatever I wanted. I was hyperfocused on taking care of his skin’s needs and dealing with itchies. He still slept in all cotton with socks pinned to his sleeves so he would scratch himself bloody during the night. He would itch in his sleep, without even waking up. He was a high needs sleeper, tossing and turning all night. Nursing non stop. I was soooo tired! And stressed. The big kids were acting out and feeling neglected. We were searching high and low for a place to live. We settled on building a new house because it limited what Miles and Blake, who is allergic to dogs and cats, could be exposed to. And it was hard house hunting with 3 kids that had just been displaced across the country. Stressful times.

I found a pediatrician that I really liked. She didn’t harass me about not vaccinating. She was supportive of breastfeeding. And when I sat in her office and told her the story of Miles, and cried and cried, she hugged me. She wanted to do some bloodwork to see what his IgE levels were. This could be an indicator of him allergically reacting to something in his environment. And she wanted to test his antibodies for the viral infection that he had. Based on what I told her, she questioned the diagnosis. His tests revealed that he had a VERY high IgE level. They want to see a 0. His levels were 6000. Yep, he was reacting to something alright. And his antibody test? Negative. He had been misdiagnosed. He NEVER had a viral infection, it was probably bacterial. Again the tears came. I was soooooo relieved. And now, we had to figure out what he was allergic to. It was daunting. To an allergist, we were referred.

The allergist was ok. Let’s just say that we only saw him once! He ordered a RAST blood test for a handful of things. Miles was positive to peanut, milk, egg and wheat. All the foods that he was tested for. For some reason, with the impending move into our house and the situation at my dad’s, the only food I eliminated from my diet was peanut. We were never prescribed epi pens. We moved into our new house 3 weeks before Miles turned one. I wasn’t feeding him any foods except bits of fruit or avacado. My middle son, Lance, had a sensitive gag relex and didn’t eat anything until he was one. So I wasn’t worried that Miles wasn’t getting enough to eat. And I wanted to take it slow because of the allergy diagnosis.

My boys right after we moved to TX. Blake, 8, Lance, 5, and Miles 9 months

Miles was the sweetest baby. Depsite all of his issues, he was a happy boy. He loved people. When he was teeny tiny he would reach out to people to touch them. When he was barely a year old he could point out all of the fire hydrants as we were driving down the road. He would get SO excited! I’ll never forget how he felt in my arms as a baby. And he was in my arms all the time!

I really thought that writing story of his first year would remind me of where we have been and how far we’ve come with him. It has but it’s also dragged up some memories of times that I wish had never happened. And with those memories come the raw emotion. I don’t know that I’ll ever recover from those dark months. But they happened and we survived, somehow. Motherhood really is a journey. Sometimes it’s pure bliss, other times it’s more than you bargained for. But it makes us stronger, that’s for sure. And, for me, all of the challenges we’ve been through have made me appreciate what we do have. And for that I’m grateful.

 

Miles’ Birth November 15, 2009

It’s official. I’m counting down the days until my babiest baby turns 5. It seems so monumental to me. 5 whole years. And yet, it’s happened in the blink of an eye. It’s taken me this long to actually write out the birth story of Miles. I don’t know why. Maybe it’s the chaos of having 3 kids. Maybe it’s what we’ve been through with him in his short life. Maybe it the fact that things didn’t go quite as planned.  Here’s how it happened…

Miles was a very planned baby. And I mean very planned. We waited to have him until the timing was just right. And it was. Just right, perfect. I became pregnant in Feb/March of 2004. Right away I knew that this pregnancy was different from my first 2. I was so incredibly sick, right from the beginning. My whole pregnancy I was ill. I was virtually incapacitated. Thank goodness Miles was so planned. Our older boys were 7 and 4, barely old enough to understand why mommy couldn’t  leave the couch, but old enough to play together. And they did. That summer Blake taught himself to read. Lance learned to eat ice cream out of the container. And I learned to let go of my visions of perfect motherhood, a perfect house and homeschooling perfection. Not that I ever had any of those things. But, now, I had FAR from those things.

My labor began on my very own birthday. I turned 29 and was anxious to go to dinner at The Family Buggy with my family and my grandmother. Contractions began as we left for dinner. They were strong, and close but I knew that I was light years away from having my baby, so to dinner we went. It was about 7 pm. All throughout dinner, grandma kept making a fuss about how the contractions were so close together, we needed to get home and call the midwife etc. Again, I knew that it was going to be a while. Despite my baby being a few days “overdue” I wasn’t the least bit worried. I was hungry! My contractions were 2 minutes apart lasting 1 to 1 1/2 minutes long. They were mild, however, and I called the midwife on the way home from dinner. I told her it was early but I wanted her to be prepared that we might have a baby in the next day or so.

After I was home, I put my older kids to bed. I distinctly remember tucking them into bed, wondering if this would be the last time before their baby brother would arrive. All throughout my pregnancy I had a sense that something wasn’t quite right. I worried that something was wrong with my baby. I grilled the ultrasound tech at my scan. Nope, everything looked perfect! Still, I wasn’t convinced. I feared that labor would be long and hard like my second, who had a brow presentation. I had lots of anxiety during my pregnancy. Yet, when labor actually began, I was like “Bring it ON!”. I labored through the rest of the night, into the early morning. I managed to get some sleep in between contractions. They had spaced out considerably and I was grateful.

I awoke fully at about 5 am on November 18th. My birthday had passed and I knew that my baby wanted his own birthday. I was excited that labor day was finally here. I remember being awake while everyone else was sleeping and enjoying the peace and spending time alone while laboring. All was well with the world.

I can’t remember what time my boys woke up. It’s crazy that I don’t remember them much during my labor at all. I guess they were used to a mom who couldn’t do much but lay on the couch and cross her fingers that her last meal would stay in her body. I do remember, however, that around 10 am the cable guy showed up to hook up our new system. He saw me laboring on the couch and I informed him that I was having a homebirth. His wife was newly pregnant so I gave them the brochure about my childbirth classes. They never called for classes. I wonder why?

Contractions were still rather far apart but really intense. I called my friend Leslie. She wanted to come right on over, to be with me. I told her no. After I had a contraction and was moaning and deeply breathing, she insisted. She picked up a 12″ turkey Subway sub on the way, one of the only things I hadn’t found completely revolting during my pregnancy. She got to my house around noon and I scarfed down the entire thing. It’s a good thing I did, I would need all of that energy to get me through the most intense labor I’ve ever experienced. Leslie helped time the contractions and I still have the paper which she wrote them down on. She has beautiful handwriting. I cherish it.

Steve worked from home and was busy with the big kids. I spent a lot of time with Leslie. She was amazing. She always had her hands on me. I found her touch to be so incredibly soothing. Soon thereafter, the midwife’s assistant arrived. She checked me for dilation. I can’t remember what I was but it was still early in the game. Labor progressed really rapidly after that point. I was soon at 6 cm. Then at 7 cm. More of my entourage arrived. My mom, my sister Brittany and her camera, my sister Briana to take care of the boys, my midwife. My friend Nicki, who had the most amazing, encouraging words. I’ll never forget her voice and love.  Debra and Allison, 2 other near and dear friends, and the photographer. Things were moving right along.

Unfortunately, my cervix wasn’t applied to the baby’s head. Again. This was what I dreaded from my last birth. A baby, floating high in my pelvis. Last time it was because of the brow presentation. This time, from being posterior. A posterior baby tends to create longer and more painful labors. Usually a woman experiences intense back pain with every contraction from a posterior baby. Babies rotate to anterior at some point during the labor and the birth progresses more rapidly after that point. Well, I wasn’t so lucky. I had a stubborn baby who wanted to make me really work hard to get to hold him. At the time I didn’t realize it but at some point he actually fractured my pelvis. Ouch! With every single c0ntraction I was screaming. This began at around 4 pm, as I recall. Intense pain right near my pubic bone. Worse than the pain with my brow baby that was worse than the pain with my birth that had pitocin. It hurt really badly.

My baby wasn’t descending. I was in agony, like I had never felt before. I was screaming with each contraction which were now very close together. I needed relief. I had to get into the water.

I was instructed to get out of the bathtub because my baby wasn’t moving down. The water wasn’t really helping to relieve any of the pain anyway. I guess that’s what happens when you have your pelvis broken during labor. The “aquadural” doesn’t work like it’s supposed to.

I got into the side lying position on my bed. I needed to rest, I was getting exhausted. I think at this point in my labor it was 8 or 9 pm. Thankfully, I had listened to my own advice. The advice I give all the pregnant moms that take my birthing classes. To rest while you can. I was able to get sleep, albeit broken sleep, the night before. I had been in active, intense labor since 5 am. I was glad that I had gotten some sleep the night before. But at this time my energy was wearing out.

I was needing lots of counterpressure and encouragement. The women that I had surrounding me, touching me, telling me I could do this. They were invaluable. Their confidence in me helped during the most diffucult part of my labor. The hours of transition.

I was told by my midwife to get up and we were going to try some different manuevers to get him to move down. I had been “stuck” at 7 cm for quite a while. I was willing to do anything at this point.

I sat down in the birthing stool. Again, excrutiating. I couldn’t find a position that offered any relief whatsoever. Steve was by my side and was talking to Lance. He was 4 and a half. Both of my boys had been prepared of what birth sounds like and looks like. I was hoping that they wouldn’t have to see birth in this intensity, but they did. They didn’t spend a lot of time in our room, where I was laboring, but they did come to check in on me occasionally.

I had to include a screaming through a contraction picture! Did I mention that I was in agony? Oh yes, I did. And I was.

I was exhausted and things were getting very tense. It was about 9 pm. Contractions had been relentless for hours. I’d been screaming for hours. Despite the fact that my baby was persistant posterior, I had no back labor. It was all in the front, near my pubic bone. I now know that the pain was due to the pelvic fracture. I was still only 7 cm dilated. My baby wasn’t descending, despite numerous crazy positions and even my midwife trying to turn him for me. My water broke. I was hopeful, thinking that this was exactly what we needed. Once the water was broken, he would really descend. Nope. I was checked for dilation. Still at 7. My confidence was really wavering at this point. I was starting to panic. I knew that I couldn’t go on like this for much longer. That’s when I made the decision to go to the hospital.

Although I teach natural childbirth classes, and had my last baby without any pain medication, I know that there is a time and a place for epidurals. That time and place is very small in relation to the amount of epidurals that are given today in America. I teach that in my class as well. Epidurals, like everything else, have risks and benefits. They can cause problems in a normal labor. But every once in a great while, they can help. In my labor land mind, which was distorted reality, I really just wanted a short break from the intense pain so I could figure out what I needed to do to get this baby out. Obviously I wasn’t thinking clearly. If I had been in the hospital and had an epidural, I would have almost certainly had a cesarean birth. Not something that I wanted unless I truly needed it. It’s true, I was in intense pain. However, my blood pressure was fine and the baby’s heart rate was great. We were doing just fine. 

I started packing up to go to the hospital. I was desperate. Things didn’t feel right. I’ve had 2 other babies and this didn’t feel the same. It hurt ten times worse than my brow baby, which hurt ten times worse than my pitocin induced birth. I honestly didn’t know that a person could live through so much pain. While I was walking around frantically to collect my things, I was screaming my head off with every contraction. I remember telling the boys that I was going to the hospital and I might need to have surgery to get the baby out. I had to stop several times while talking to them to scream through a contraction. I wanted them to stay at home with my sister because I didn’t want them to be waiting around in the case that I had a surgical birth. I think it was 10 pm.

Steve drove me to the hospital with Leslie in the back seat. The rest of the entourage followed. I was pounding my fists on the dashboard and screaming for Steve to speed. He wouldn’t. I had so many emotions during that car ride. Anticipation, anger, sadness, desperation, frustration. Why was this happening to me? I’m a natural childbirth educator, a home birth advocate. And yet, at that moment I was also a laboring woman. Like all the other laboring women. I had to follow my instincts.

We arrived at the hospital and I was taken to triage, screaming all the way. There was no time to collect any insurance info, no time to sign consent forms. It was obvious to everyone there that I was in active labor. I started shouting stats. “I’m 7 cm, he’s OP, my membranes ruptured and fluid was clear. My midwife is on the way with my records. Get the anestisiologist NOW! I’m B+”. The nurse looked at me and said “Honey, we need to check and see how far dilated you are!”. Normally you have a dilation check in between contractions. Mine were so close together, one on top of the other, that they couldn’t wait for a break. I never had a break so the nurse had to check me anyway. I was shocked to hear her response.

“Honey, you’re complete! Let’s get you into a room so you can push this baby out!” I was flabbergasted. What?!?! You mean that I drove all the way to the hospital just to push my baby out? I was stunned and also relieved. I wouldn’t have to have a cesarean. I could deliver my baby without an epidural. I can do this. My confidence was replenished.

As they wheeled me down the hall, heaven forbid I get to walk, I was pushed past another mom, probably in early labor, who was walking with her IV pole and laboring. I still feel bad for her. She witnessed quite a sight. A frantic, screaming pregnant woman being wheeled past. I wonder what that did for her confidence. I wonder if she got to have her baby the way that she wanted to.

In fact, I made such a commotion in the hospital labor and delivery area, people were popping their heads in to see what was going on. One of those was a midwife that worked at the hospital. I taught many of her pregnant couples childbirth classes. I had seen her just 3 weeks prior at a birth fair. We were chatting about our babies, she was also pregnant with her third. She was a couple of months behind me. And here we met again. Fate. She was awesome, such a warm familiar presence in this place that I didn’t want to be.

I got the on call Dr. Not much to say about him, I don’t think he said two words to me. The nurses got me up on the bed, laid me flat on my back and I began pushing. Things were so chaotic, I didn’t even request to be lifted up at all. The moment I felt the intense pressure of my baby moving down was the only moment during my actual labor that I was afraid. I was so afraid. But the moment was fleeting, I pulled my emotions together and focused all of my energy downwards. My baby was still posterior and I was pushing with all of my strength. The hospital midwife was sooo enouraging and loving. My homebirth midwife had arrived with my entourage and I was surrounded by people that I love. The nurses were amazed at how quickly I pushed him out.

And at 10:45 pm on November 18th 2004, a Thursday, Miles Edward Jordan joined our family. He was a whopping 9 lb 10 oz.

I felt the instant relief and undying love. I was beyond exhausted but one look at that sweet, fat baby and it all melted away. I met my son, Miles, whom I had gone to the ends of the earth to bring into this world.

And that the story of Miles’ birth. The edited version, believe it or not! The hard part was over, or so I thought…

Miles and the Ambulance Ride April 5, 2009

It happened last night. An ambulance ride for Miles is inevitable at some point in his life due to the severity of his multiple allergies, food and otherwise. However, his first ambulance ride was not of the allergic nature. It was something that we never ever expected.

Miles started getting sick on Friday. It started with a mild cough in the morning. By the evening I could tell that it was full-on bronchitis. Yay. Most of the time Miles gets sick he also comes down with bronchitis. I have asthma and so does his older brother, and while Miles hasn’t been diagnosed with asthma, I’m sure he has it. Hence most colds turning into bronchitis. The cough wasn’t bothering him much and with no other symptoms to speak of, we continued about our day. By 2 am he was up, really feverish, coughing and obviously miserable. A dose of Motrin, some cuddling with mommy and he was back to sleep.

When he awoke yesterday morning he was his mostly his happy self. A little crabbier than usual but nothing alarming. By 12:30 pm his fever was back with a vengance and he was visibly uncomfortable. Another dose of Motrin, more cuddles with mommy and a few popsicles. He was good to go.

My grandmother was staying with us for a few days and we needed to take her over to my aunt’s house, about 45 mins away. We all piled in the car. I didn’t even entertain the thought of having Steve take my grandma to my aunt’s. Miles was playing and having fun. He wasn’t 100%, but he wasn’t miserable either. So, I didn’t see the harm in a car ride while watching movies on the DVD player. Harmless, I thought.

On our way home Miles started getting really warm and whiny again. I was sitting in the back next to him and was able to comfort him. He fell asleep in his carseat and I figured he was getting his fever back and was tired from the night before. Good, get some sleep sweet boy. He woke up when we were on our way home and was happy and talking but still really warm.

When we arrived home it was around 6 pm and I gave him another dose of Motrin, even though I was supposed to wait another half hour. I needed to make dinner, the big kids were getting hungry. Miles was very clingy and just wanted me to hold him so I put off making dinner and I sat on the couch and held him. That’s when it happened.

I really didn’t know what it was at first. Miles was cuddling in my arms one minute, and trembling the next. His face turned away from me and he was unresponsive. I started calling for Steve who was in our bedroom. I noticed that Miles’ lips were turning blue and he was having a hard time breathing. Panic set in. I jumped up off the couch and ran into our bedroom where I ran into Steve at the doorway, he was on his way to see what I was screaming about. I told him what was happening and just kept saying “Something’s wrong!’ over and over. Steve called 911. Miles started to breathe a little better, still shallow but his lips were no longer blue. I was literally freaking out one minute, then calming myself down the next. I was trying not to scare Miles but I was really really scared and I was shaking all over. I’ve never been that scared in my life.

I was pacing around the house with Miles in my arms, trying to get him to talk to me. Anyone that knows Miles knows that he loves to talk! That scared me even more. He had that look, the glazed over eyes that reminds me of a child with severe autism. The 911 operator mentioned to Steve that it could be a seizure and told us to make sure if he vomits to clear his airway. That’s when I realized he was having a seizure.

The fire truck and ambulance arrived at our house within minutes. We live within walking distance to the fire station so they are always prompt. I couldn’t stay in the house, I ran with Miles out onto our front lawn. Our street has many families on it and lots of kids and parents were outside playing when the rescue vehicles arrived. I can’t put into words the fear I felt. Miles has had some wicked, fear inducing allergic reactions of the life threatening nature. I am no stranger to the fear of a child dying but this was so intense. With an allergic reaction I have benadryl and epipens to counteract the effect of the reaction. This time there was nothing I could do to make the seizure go away. I felt absolutely terrified and helpless.

The paramedics got him into the ambulance right away and confirmed he was having a febrile seizure. It lasted more than 5 minutes, I’m not sure how long exactly. The paramedics were asking all sorts of questions about what we did that day etc. They didn’t look for his Medic Alert bracelet but I pointed it out. In all of the chaos it was hard to answer the questions. I couldn’t think straight. My hands were shaking out of control, I was trying to soothe Miles who was confused and scared and really just out of it. The wanted to start an IV. One of the paramedics poked him 3 times in one arm. Another paramedic poked him another 2 times in the other arm. They had to dig around each time and it took all of the fire fighters and paramedics to hold him down. It was awful. Of course they couldn’t get the IV started so they decided to let the hospital do it.

I rode to the hospital in the ambulance while a neighbor took the bigs boys to her house and another neighbor drove Steve to the hospital who was also shaking so hard that he could barely stand. I had to ride in the passenger seat of the ambulance, they wouldn’t let me ride in the back with him. There was a little window where I could see and hear him. At the first red stoplight the paramedic in the back with Miles decided to try the IV again. He got it in but because he was alone and no one could hold Miles down, Miles ripped it out. When I looked back there, blood was rolling down Miles’ arm. I thought I was going to throw up and I couldn’t stop crying. The ambulance drove to the hospital very slowly. It was awful. Miles was singing the Indiana Jones song really loudly, I believe as a coping mechanism. He was scared, I was scared. He started to scream for me just as we were getting to the hospital. I just wanted to be back there with my baby

At the hospital they checked us in. The were asking about all of his allergies. I couldn’t think straight at all. I couldn’t remember what his allergies were. Miles wouldn’t look at me, he wouldn’t talk. It was the weirdest thing. Even in the past when he has had hurty medical procedures, he always wants his mama.

Steve met us at the hospital and the dr confirmed the diagnosis of febrile seizure. He said that because Miles is 4, which is a late age to have an initial febrile seizure, and the fact that it was so long, he wanted to do bloodwork and a chest xray to rule out underlying causes. Bloodwork. Great. So they poked Miles again 2 times in one arm and got it the first time in the other arm. They left a needle and port in just in case they needed an open vein. He was starting to come around finally. The dr explained that after a seizure the person is usually really out of it and disoriented for an hour or so. That explained why Miles was acting so weird. While we were awaiting the results of the bloodwork Miles got to watch Madagascar, one of his favorite movies, and I rocked him. It felt soooooo good to hold him again.

Bloodwork came back normal, xray showed bronchitis. Dr wanted to administer antibiotics through the IV. Good, I thought, no more trauma! Wrong! The IV wouldn’t work. So they had to give him an antibiotic shot. I had to help hold him down this time, along with Steve. Torture. Then we were free to go.

It was a scary night at home, thinking that the seizures could happen again. He got feverish again during the night and required a Tylenol/Motrin combo to control. The dr said if he had another seizure to call 911 again. Steve and I barely slept, worried. Blake and Lance got to spend the night at the neighbor’s house which was so helpful. We were able to completely focus on Miles. Steve and I were both totally shellshocked.

I promised Miles the biggest Indiana Jones Lego set that they make, for all that he went through. We got it for him today and he’s been playing with it ever since. Miles is acting fine, we are treating his fevers agressively to prevent another seizure. I’m glad that he’s ok, that we have awesome, helpful neighbors and medical insurance LOL!

I’m totally drained, physically and mentally. When Miles wouldn’t stop talking in the middle of the night, it was music to my ears. We had an interesting conversation about bad guys (the viruses) and the good guys (white blood cells) and the battle that was taking place in his body. We talked about how the medicine he was taking gave the good guys better weapons and the battle would be won by the good guys soon.

I hope we never have to go through that again.

Lance Turns 9!!! March 6, 2009

Wow. Time fies when you’re having fun!

On Wednesday Lance turned 9! We had sooo much fun celebrating with him! He is such an amazing boy and anyone who knows him can attest to that. He is our second son, looks just like his daddy except for my blue eyes and has a heart of gold. He is ready and willing to help out anyone in need and has an incredible work ethic. Lance’s favorite shows are Extreme Home Makeover, How It’s Made and iCarly. He recently discovered that loves steak, namely filet mignon, and his other favorite food is cheese pizza! Lance enjoys cooking, building, playing legos, reading, watching movies, computers, and taking care of his gecko, Sammy. I’m the luckiest mama alive:)

Lance had been counting down the days until his birthday! He had been marking off the days on the calendar! When his special day finally arrived, he was ecstatic! In the early morning Steve took him to his reading lesson. I told him he didn’t have to go but he loves going so much that he wanted to! When they returned it was present time! Here are the pics…

He got Skate 2 for PS3 and a Lego Power Miners set from us and a Lego Power Miners set from his Aunt Brittany and another Lego Power Miners set from Nana and Uncle William. He was thrilled!!! After the present opening it was time to go to Lance’s favorite restaurant for lunch, Olive Garden. We never ever ever go there because it’s allergen filled but we always make an exception on Lance’s or Blake’s birthday. Lance got breadsticks and shredded cheese and gobbled them up! Miles had his own food and we didn’t have any issues. Phew! On our way home from lunch we stopped at Hobby Lobby to get Lance an electric train set but he didn’t see one that he liked so we are planning on taking him to a different hobby shop soon. He wants to have an “N” scale train set and create the whole spread in his room.

When we got home from lunch we sang happy birthday and had cupcakes. My boys love the allergy free cupcakes that I make (and I’ve gotten lots of other compliments on them, if I do say so myself!) so when Lance had the option of what type of cake he wanted, that’s what he chose. It’s awesome that my older boys are so great about the food allergies. They are fine with the allergy free food so that Miles can feel included.

Lance and the boys played for a while after the cupcakes. Lance built his Lego sets and had a blast!!!! Soon it was time to meet his best friend, Lucas, at Incredible Pizza Company.

Incredible Pizza Company is like Chuck E Cheese on steroids. It boasts an arcade, bowling alley, go carts, laser tag and a full buffet. It literally gives me hives, knowing that all those kids running around with allergy coated hands, playing all the games. Thankfully Lance’s birthday has fallen on weekdays the last couple of years and not a busy weekend, reducing the likelihood of a reaction. It’s nervewracking, nonetheless, and I struggle with the balance of giving my non allergic son the special day he deserves and keeping my youngest, life-threatening food allergic son safe. The last thing I would want to do is to make Miles feel left out due to the allergies he has so we risk it, medicine in hand. We take the appropriate precautions and haven’t had any problems in the 2 years in a row that Lance has requested to go there on his birthday.

We met his best friend, Lucas, at Incredible Pizza Company along with Lucas’ dad and younger brother. We played and played and Lance had an awesome time! Half the time, like true big kids, Lance and Lucas went off and did their own thing, having tons of fun. They pigged out on pizza and ice cream and went back for more fun. It was a great time! Well, from what I could tell from the bench across the arcade. IPC isn’t conducive to a mommy on crutches who needs to keep her foot elevated so it doesn’t swell:)

When we got home, exhausted and partyed out, I reflected on Lance’s birth. A birth that changed my outlook on birth. A birth that set me on a career path, of helping others get the births that they desire. A difficult birth, a home waterbirth. An anticipated and beautiful birth. I’ll never forget what it felt like to give birth to Lance. It was an amazing experience, one that I will cherish forever. I never forget the moment I looked into each of my son’s eyes for the first time. With Lance, I was holding him and could feel his warm body laying on mine. His face was blue, due to his position during labor. He was a brow baby, for all of you birth junkies out there. If I’d been in a hospital, I’d for sure have had a cesarean. His birth was so incredibly empowering that I decided to become a childbirth educator and doula myself. I wouldn’t trade his birthday for the world.

Happy Birthday sweet Lance! I will love you forever:)

Ouch! February 16, 2009

I sprained my ankle badly, third degree. 

Here’s how the incident went down…

We were driving around, looking at houses and we decided to stop by the house that we are about to put a contract on the build. Steve wanted to go into the house and check out the attic and take some more measurements. He pulled us up to the curb and I got out. I opened the side of my van to unbuckle Miles from his carseat, like I’ve done a thousand million times. When I stepped down to the street level, I didn’t realize that there was a drain there and the cement was considerably lower than I anticipated and my foot rolled to the side as I put all of my weight on my ankle. I heard a snap and intense pain. So, after hopping around in the street for a while, I was whisked away to the ER. I was sure I had broken my ankle.

The car ride to the hosptial was rough. The pain was immense, I was literally doing my birthing relaxation techniques. Was it as bad as my last labor and birth? No. But it sucked nonetheless. It really brought back to mind the last time I was frantically on my way to the hospital in lots of pain. I was a homebirth transport and just about to push Miles out. Now, he was sitting in his carseat next to me and visibly worried about his mama. He handled it well though. Once we got to triage, he asked if I was going to have pokes in my back. He was referring to his intradermal insect venom test that he is still traumatized by. He got multiple intradermal injections every 20 minutes for 3 hours. It was awful. Once I assured him that I would receive that and neither would he, he was fine!

The ER visit was bizarre. Random people kept trying to talk to me and when they noticed my ankle that was so swollen that it looked like an orange was busting out of it, they couldn’t help but grimace in pain. Thanks. That makes me feel better. As I hobbled out on crutches and grumbling about how I didn’t know how I was going to survive my upcoming busy week, a young man in a neck brace says “Hope you feel better!”. Who was that person?!?!

Turns out it’s just a sprain. My sister who has both sprained her ankle to the third drgree twice AND broken it says that the sprains were way worse. Yay. Our friend, the orthopedist will be happy to see us again. We haven’t seen him in a couple of months, since Lance broke his foot. I’m glad to know that his 3 little boys will be able to go to college in part, because of us!

So here I sit, bored beyond belief, being waited on hand and foot…pun intended! Am I grateful for my supportive family, willing to take complete care of me? Yes. But I hate daytime TV, my laptop is still broken and I’m awaiting my new Dell to arrive, and I have a million things to do! I hate being bed-bound. It has to be the worst part of this experience.

Tonight I am attending the SAFER Houston meeting, despite the prot

Happy Valentine’s Day! February 14, 2009

Despite Miles being incredibly sick with the flu, we still managed to have a great day!

I stayed up really late last night baking and molding chocolate and wrapping presents. Are we the only ones that spoil our kids for these meaningless Hallmark holidays? It’s a tradition that started with my mom. She always made every holiday super special and yummy! She still sends the kids little treats for Valentine’s Day, this year the boys got cards and gum. They are always thrilled to receive anything from Nana. Thanks Mom!

Unfortunately, Miles has the flu and is m.i.s.e.r.a.b.l.e! He was up a lot last night and arose early, making for one tired mama:( But, I perservere. Isn’t that what makes a mom?

When the boys got up they got to open their presents. Blake got a Lego Bionicle, Lance got a Bakugan set and Miles got an Indiana Jones Lego set. All boys got a chocolate bar, Blake and Lance got Hershey bars, Miles got an Enjoy Life chocolate bar. That was breakfast! I also got them a couple of trays of Peeps but they weren’t interested.

The presents await…

Steve and I had to cancel our date plans because Miles was so sick and we didn’t want to leave him with my sister. I was bummed because I was really looking forward to a night out with Steve! Instead we stayed in and I cooked an awesome filet mignon dinner. Yum! What was really impressive to me was that Lance tried the steak for the first time ever and LOVED it! Miles didn’t want any part of it. The flu has affected his sense of taste and the foods he usually loves don’t taste good to him at all. Right now popsicles and tapioca rolls are sustaining him. Blake, our resident carnivore, also enjoyed the steaks.

After dinner, the kids got to decorate the giant cookie cake that I baked last night. First Miles and Lance helped me make the frosting, then it was time to decorate, which they had all been eagerly anticipating all day! They insisted that I divide the giant cookie into 3 equal parts so they could each decorate their own pieces. Fine. They had a blast and were so good about taking turns. At first I helped Miles but he quickly caught on and was doing it on his own in no time! When it came time for the taste test, the cookie cake got mixed reviews. Blake thought it was really good, Lance thought it was ok and Miles didn’t care much for it. Probably due to the illness as I can’t see this boy disliking anything with chocolate chips! Steve and I didn’t actually try it since we are both on diets but I thought it smelled and looked delicious and as soon as I’m off this diet I’m making one just for me!

Before…

During…

After!

What did Steve and I get each other you ask? Well, being that our anniversary was 2 weeks ago, we didn’ t get each other anything. We usually don’t get each other anything huge for Valentine’s Day. Sometimes I get flowers and chocolates but with the diet this year, no chocolate. We were going to go out to a fancy dinner but with little Miles being super sick, we opted out of that one too. Anyway, nothing can really top the diamond necklace that Steve got me for our 15 year anniversary! We spent the day with our family and we had a lot of fun!