He's done it again!

Since my last post, there have been a lot of ups and downs, but once again...my sweet boy has proven to everybody that he is a fighter! He has a lot to live for, and people who love him more than anything, and he pulled through it all. After almost a month on the ventilator, he is off of the ventilator, better yet...off of oxygen altogether! They performed a spit fistula on him, and after that he seemed to improve slowly, but steadily. He is still in the hospital but was taken off the nasal canula yesterday and has been doing great without the oxygen. He only has 1 chest tube in place, the other was removed, and is only on one antiobiotic. No pain meds anymore. They weaned him off of all of the narcotics (methadone, phentanyl, versed, etc) They let him wake up right before Christmas. The best Christmas gift we could have ever asked for. He is on the regular pediatric floor now, and no longer in the PICU. All of the surgeons and Dr's are pleased with his progress, and surprised that he made it. He was so extremely sick that everybody thought the worst. Thankfully he proved them wrong. I can't wait to be home, and have all of my family together again. He will need surgeries in the future to try and reconstruct an esophagus out of intestine or something else, but the surgeons said we'd discuss that further at a later date.

He is smiling, laughing, and interacting with us. He is our miracle, and I thank God for this strong, sweet man every day. I am also so grateful for all of the wonderful friends and family who have supported us during these times, the prayers, the gifts, the friendship, the love. All of it. I couldn't have asked for more.

Keep going baby!

Brayton is doing better today than yesterday. His vent is on 60, and his oxygen is looking great. He is at 94 at this moment. His Co2 levels are still high though but as long as his sats look good, then they can deal with that. He is still in critical condition, on dialysis, and receiving a lot of help with breathing but improvement is improvement and I am happy to take it! Their concern currently is that since he's been on the ventilator, going on almost a week...they are worried about the damage it is doing to his lungs. They are talking about the possible esophageal surgery in a week or two, as long as Brayton stays how things are now. Fingers crossed.

Havent updated in a while

It's been a long time since I've last updated. Things were going pretty well with Brayton and life was moving forward.

Brayton had a stent placed in Sept to help his esophagus remain open, and to help with the weekly SF trips. This last Friday, Brayton was lethargic and feverish. We took him to the pediatrician, and his oxygen levels were in the 50's. An ambulance was called, and he was placed on oxygen immediately. He was taken tot he emergency room, and put on a nasal canula and an oxygen mask. He was non-responsive, and things were not looking good. San Francisco was called, and they sent a flight team up to pick him up.

By the time they got to the hospital, they needed to place him on a ventilator. He has been here since, and what caused all this, was that the stent they had placed eroded, and went through his esophagus and into a lung. He had to undergo surgery to place chest tubes, and to remove the stent. He has been touch and go since then, and the surgeon had told us it was a very real possibility that he may die. He is very sick. His kidneys are failing so he was put on dialysis, which seems to be helping. He has a hole in one lung from the stent, his esophagus is completely ruined and probably will have to be reconstructed a long time from now, if he makes it through everything. There was a very bad infection in his chest due to the perforation. He is on an oscillator (like a vent but normally used for preemies/small babies), receiving blood transfusions, and on many medicines. They told us he is the sickest baby they have in the PICU.

Please keep him in your thoughts. I can't imagine my life without my boy. He's strong and we are hoping he will get through all of this.

Admitted to 6 Long.

Today was Brayton's 2nd dilation since the last post. It didn't go as planned. This boy likes to surprise us. At his dilation before today's, they told us we could start coming bi-weekly! The last dilation went very smoothly, and despite the fact he hadn't had one in 2 weeks, he was easy to dilate, and it hadn't shrunk down. Progress. We were thrilled.

Today on the other hand, they told us it was difficult to dilate, and had constricted down a good amount. Afterwards, he could not maintain his oxygen, and after the xray, they determined that it looked like they had collapsed one of his lungs. The ventilator had only been supplying to one lung, instead of both, causing the other to slowly collapse. He was admitted today to the Pediatric Floor. I am so sad I can't be there with him, to hold him, and make sure he's okay. Daddy is there with him though so he's in good hands. I just pray that he gets better quickly.One more hurdle my boy will overcome though, just one more hurdle. He's tough, he'll do it.

A few new things.

Life sure throws some crazy things your way. It is up to us in how we face those things, and how we deal and cope. There has been some family issues that have come up within the last week, so I'm sorry if I've been M.I.A lately.

Brayton hasn't had a dilation in almost 2 weeks. The last one he had, he ended up with a fever, and throwing up the day afterwards. Just like the previous weeks before that. Strange coincedence if you ask me. I took him to the Dr's, and they put him on antibiotics, and albuterol 3 times a day. They said his lungs sounded really junky, more so than what is normal for him. They asked us to come back 3 days afterwards to have him checked again. No more fever or vomiting, but still really junky sounding and a nasty cough. He was put on lung steroids, and the local pediatrician he sees, contacted UCSF and recommended that surgery be postponed. UCSF agreed, considering the circumstances. Today, he is still sick. He is crankier than usual, runny nose, and still doesn't sound quite right. I'm getting pretty concerned, and wondering if his body just isn't tolerating the procedures well any more, or if this is just some fluke.

He is doing well other than that, and has been referred to a G.I. speciailist because our pediatrician wants to attempt bolus feeds, instead of continuous feeds, since we constantly find him (while he's sleeping) with his cord wrapped around him-body, neck, etc. It's scary to think what could happen if we don't check on him at the right time throughout the night if it happens to be wrapped around his neck.

He had a testicular ultrasound last week, and one of his testies, is still undescended, and the other is a sliding testicle. It doesn't stay in the scrotum like it should, it goes up and down, so both will be needing surgery. Poor little man! We will be scheduling that surgery as well.

I just hope he feels better soon. It's so sad to see your little ones not feeling well.

What a Day

Today was a mixed bag of emotions. I was finally taking my behind the wheel drivers test, but right before heading out the door, my husband calls. He was fired today. It's just amazing how many tests & trials we have been through these past couple years. I'm trying not to let it get to me too much, because my husband is a worker, and always finds something new when another doesn't work out. I'm trying to keep the hope that this won't have us down for too long. The trips for San Francisco-defintely compromised now, but we will do our best to make it work. Rick filed an unemployment claim today, and we have both been searching the classifieds, craigslist, and yahoo jobs for some opportunities. Tomorrow, turning in applications.

On a lighter side, I passed my driving test, and am now an official, legal, licensed driver. Feels amazing to have it-after 24 long years! I can get things accomplished now, and not have to depend on anyone else. It's about dang time!

We couldn't make it to Brayton's dilation on Monday. Not good, but we are trying to get it in somehow this Friday, and we would stay through the weekend and have next weeks dilation done on Monday like regular. We are waiting on the surgeon's call to okay this. Hopefully we can pull it off.

Well, off to snuggle with my husband and be grateful for the things we do have.

One more down!

Brayton had a dilation on Tuesday, and it all went well. They got him dilated up to a 38. The surgery seemed to go quickly this time, and even though he was cranky at first, he seemed to snap out of faster than usual also. I hate that he goes through all of this, but I sure do admire that kiddo for his strength. They said in the future, we will begin bi-weekly dilations, then monthly, and then see how it goes. I can't wait to get started with that. The surgery before last, they removed the tube from Brayton's nose, so it seems like things are taking steps in the right direction. He has been eating purees, and things like oatmeal. He's enjoying that for sure.

We had his 2 year check up yesterday, and he is doing really well. She was surprised at how he caught up so well, the only thing he is behind on is speech. He is talking but only single words. We are going to be referred to speech therapy, and for a hearing evaluation (although his hearing has proved to be fine in the past.) He also needs to get a testicular ultrasound to determine if the left one has come down or if he still needs surgery with urology. Might as well get that taken care of while we're going down there weekly.

Getting closer

Rick & Brayton got home from the dilation on Monday. It went really well! They took the tube out of Brayton's nose. We are all so happy about that one. Also, the esophagus was still the same size as last weeks (also good news!) so it was a 36. They had told us he wouldn't need surgery next week, just a swallow study, but we got a call yesterday switching it back to surgery. The surgeon said he didn't feel comfortable missing a week, he was afraid it would ruin things. Bummer, but at least we're getting closer to the end of these weekly dilations. I tell myself that every single time we are finished with one, or heading to another. Just a little longer.

We are busy planning Destiny's 7th birthday party which is next weekend, and my sister, who is here visiting, will be turning 16 on the 15th, so I am trying to do something for her as well. Money is tight due to the trips, I honestly don't know how we're getting to San Fran this weekend, but somehow, it always works out!

My husband is sick right now. Wasn't feeling well yesterday and took a half day for work. I woke up to him vomiting at 5am, and he was very hot, so I took him to the E.R. It's not the flu, something viral. Hopefully it passes quickly, and he doesn't share it with any of the kiddos.

Well, I'm off to try to get things done!

No Progress This Time

So, surgery yesterday... they were unable to make any progress. They said he is at a good point, but they need to train it. They said we can start trying to feed by mouth (which we have been with pureed baby food, oatmeal, etc.) and he couldn't be happier! Hopefully it continues to go well so we can work towards even more normalcy. Here's little man leaving the hospital, popsicle in hand!

One step closer.

My two men are off again to San Francisco. I miss them already, and they've only been gone hours. Hope the surgery goes smoothly tomorrow. Every surgery is a step closer to the 3 month mark. I just can't wait.

Brayton's birthday party yesterday went really well. The weather was cooler than predicted, but it was still fine. We had a slip & slide and water balloons, a taco bar, and a sweets table. Brayton got some really neat presents. He got an electric keyboard, bowling set, a big ball pit with tons of balls, cars and car sets, chalk, a Dora movie, a kite, clothes & more! Thank you so much to everyone who came, and also to everyone who helped out. We love you all!

Optimistic news today

Today I received a phone call from the CPS worker telling me he had closed the case weeks ago, but wanted to let me know that there are funds available to me to assist with the trips! He wants me to make a guesstimate of how much we can pay & how much we'd like the request to be for. He said there are no guarantees the requested amount will be granted but that there should be something to help no matter what. I am thinking of possibly requesting half the amount of each trip for the requested grant. That would help us tremendously.

Then, about 20 minutes ago, I get a call from pediatric surgery, and at today's meeting, Brayton was discussed. They all figure there is about 3 more months, maximum, of weekly surgeries. It could be less. I won't get my hopes up for less, but even 3 months sounds good to me. Knowing there is an end to all of this, is such a relief. I hope it all goes according to plan. At his last surgery, he was dilated to a 36 which is fantastic. She said that most kids don't need dilations after they've reached the point they've been trying to get to, but that some may need a couple annually. I will take that over weekly any day! I am excited to think my son could be done with these surgeries in the near future, and that he won't have to go through that discomfort every week.

After these calls today, I can say my day is going really well! :)

Happy Father's Day

Happy Father's Day to all the good dads out there! Hope it's a beautiful day for all of you.

Rick & Brayton are on their way to San francisco today. His dilation is tomorrow. Unfortunately, we couldn't spend the day together, but yesterday was a bright, sunny day & we spent the afternoon at the Oyster Festival, walking around in the sun, getting the kid's face painted, and enjoying the day. It was nice. Rick's birthday is in two days so I am scrambling trying to figure something out for it.

I'm a little bummed today, and wish that these trips would be over with already. It's making life really difficult. Something though that is making me excited is that Brayton's 2nd birthday party is coming up next Sunday! I hope it all turns out well, and that he has a good time.

enjoy your Father's Day everyone!

Just another dilation

Rick came home with Baby B today, and surgery was pretty straight forward. His esophagus had shrunk back down to a 24 from a 32 last week, but they got him stretched to a 34 today. I wish it would just stay put so we wouldn't have to deal with this weekly stuff. The Family House also told us today, that we unfortunately cannot stay down there for weeks at a time, like we were planning on doing to save money, wear and tear on the car, and to prevent Rick from missing work. They said since Brayton only has one surgery a week, another family could be using the other days that we are there. I understand that, but it really, really sucks. The only choice we have is to continue going down there every week. Brayton is doing great, he seems like he recovered pretty quickly today & doesn't seem as out of it as he has been recently afterwards.

I have my driving test scheduled, yay! I couldn't get in until July 20th but oh well, more time to practice I suppose!

Progress

So today's surgery went well. They told Rick today that they wanted Brayton's esophagus to reach 32-34 in their measurements. Today, it is 32! They said it was much easier to stretch and it went well. They told us there will be 2 more months of dilations to try to train his esophagus to stay open. That's the tricky part. They also said we can start trying to give his Pediasure by mouth. They switched the string on his face to a white, thicker string. I havent' seen it yet since I had to stay home this time, but hopefully it looks a little better. The string was starting to attach to his nose, and looked painful so I'm hoping they switched nostrils as well. I am so happy that they made progress, and that we have an estimated time frame for this time be over with. Of course, things can totally change, but I'll enjoy this moment for now.

I went & finally got my driver's permit today! I am so happy! I got to drive with a friend earlier, and now I'm making an appointment for the driver's test. I can't wait. No more having to depend on others!!

I didnt go today

Rick left for San Fran with Brayton. I didn't go this time since Destiny's dad is out of town, and cannot watch her, and if I take her, she will miss school, so I am staying home with her & Nikiya. I can't say I'm sad that I'm going to miss those horrible roads, and my aching butt from the 5 hours in the car though. I hope Rick does okay during the drive. He always gets REALLY tired, and it scares me. It's just me, my sister, and my 2 daughters here tonight. Girls night! Maybe we will hang out with some movies, and popcorn. :)

Brayton has had a cold that just won't go away! Yucky nose and nasty cough. I wish it'd clear up since he's much happier when he's not dealing with that. I will update with the new stats when Rick calls me after surgery tomorrow. It's set for 7:30am check in. Crossing fingers there is more progress.

Onward we go

We got home from San Francisco around 9pm last night. The surgery went well, and they went from a 16 to a 28. Finally, something! They switched nostrils with the string, and that's it. He is miserable with the string in this side for some reason, seems to irritate him more, and there is some slack behind his ear, and it's driving him crazy. They didnt send us home with any Tegaderm to tape it down with! Ugh. He sounds prety bad today also, so I left a message with his home nurse who stops by once a month to come check his oxygen levels. Hopefully, he can.

I also recently was told about a hospital in a different state who specializes in cases like Brayton's. I contacted them last night, but they were closed. I left a message, and they returned my call today. Sounds promising.

Well my baby is sleeping in my arms, sounding wheezy and extremely irritable. I will update later.

Bake Sale

So, today Staples gave us the okay to do one of the booths in front of their store! We will be having the bake sale June 5th at 9am-2pm at the Staples in Eureka. We also have an okay from Murphy's Market as long as no one else is booked for that day. We find out for sure on Monday about that one, since we are having 2 booths. I am so glad we found somewhere to have it! What a relief. Now, I am running around like a chicken with it's head cut off trying to get everything together. I am so grateful for Staples!! :)

Full of Surprises

Surgery didn't go as we anticipated. When I called to check to see if Brayton was out of surgery yet, they said yes but that the Dr wanted to speak with me. Something they've never done before. The surgeon informed me that Brayton's esophagus was so constricted (worse than the previous weeks surgery. His esophagus went from a 30 the previous week to a 16 this week-after surgery) that she had to get an xray machine to help guide her so that she would not tear anything. While she had the xray on him, she discovered his esophagus is bent at an awkward angle, and that during any of these dilations, his esophagus could have been torn while doing them through his mouth. So, oral dilations are no longer safe. She went through his feeding tube hole in his stomach, and up into his esophagus. She threaded a string through the feeding tube hole, through his body, out his nose, tucked over his ear, and back into his feeding tube hole. They also placed arm braces on him to prevent him from pulling the string out. These braces are making it impossible for him to do anything. He can't drink his sippy, he can't play with toys, he can't get up if he falls down...nothing. He cries a lot now, he's so angry that he's so restricted, and I don't blame him one bit. I heard him whining this morning while playing in his room, to find him face down on the ground, unable to get himself back up. I had enough of watching this, and finally stuck some socks on his hands to deter him from attempting to get the string (which he really isn't very interested in anyways!) but so that he could still do things. He was happy about that, and it worked pretty well. Before he went to bed though, he had to put the braces back on. No fun but he's toughing it out like the little trooper he is.

The surgeon told us that we still have months of these surgeries ahead of us. Just praying for the strength to get us through!

Woke up too early

My sister & I are in SF for Brayton's dilation. He woke up this morning sick, so I wasn't sure they would take him back. Anesthesia didn't think it was the best idea, but after consulting with the surgeons, they decided to go ahead. He is back now in surgery, and I am at the Family House, waiting for their call to let us know they're done. They said with him being sick, if there's any complications, we'd have to stay the night. Crossing fingers that doesn't happen. Nikiya & Destiny woke up sick this morning too. Poor babies. Rick is in Sacramento for some testing for his work, and when he's finished, he will be heading over to pick us up, and we get to head on out of here.

I am looking forward to the bake sale coming up, but hoping Safeway will approve our fundraiser request to do it on the premises. We are going to have 2 booths, at each one. Rick & some of his buddies at one, and us girls at the other.

There's not too much to report right now, so I'm going to get off of here, and hang out until the surgeons call me over to the hospital.

Only my husband went with Brayton to this week's surgery. I've been extremely nauseaous for about 4 days and wanted to stay home and rest. It was uneventful and they said the width they got it to was the same as the previous surgery. They told us it was because we had missed last weeks surgery. I just don't understand what the plan is if Brayton's esophagus is starting to constrict again in that short amount of time. We are planning a bakesale fundraiser in June. I am looking forward to it! The friends, and letting my secret Martha Stewart out to play. Lemon squares, brownies, blueberry muffins, cupcakes, banana bread & more Our friend, larissa w. recently surprised us with a totally cute monster hooded towel and bath mit for Brayton. His birthday theme is funky monsters. It was so sweet! Once I can get to a computer, I will add pictures to my posts!

This Needs To Stop

Recently, a friend of mine, had her son's photographs stolen from her website by a pedophile, and it was used on several of his sites. He is linked to many children pornography sites, and boy-love sites as well. The name he goes by is lixthom. Some of his sites have been shut down, but he is has many more and is recreating the ones that were disabled. He is persistent, and it repulses me. To take these children's beautiful innocence, these pictures and memories that bring such joy...and use them in such a devious, revolting manner. People like him need to be locked away forever.

After this was brought to light, I went through my sites and made sure that my settings were private, or friends-only. I just wanted to remind everyone to be careful. It's sad that we have to worry about these things, but unfortunately, it's the way the world is these days.

If you can, could you please spare some positive thoughts to the many families out there whose children are being exploited by these sorry excuses of human beings.

Happy mothers Day!

Happy mothers day to all of the wonderful mothers I know and love! My mothers day started off a bit stressful and dissapointing but my friends came over with food to bbq and smiles to share. The day got better and my husband helped with the kids and house. We should've been heading to San Francisco today but had to reschedule due to finances. Luckily, the pediatric team cut us some slack but stressed that we must be at next weeks surgery. I was relieved to get a break though and to be able to enjoy the weekend with my family and friends. I'm sure Brayton enjoyed the break as well. I'm updating from my phone which is taking forever so I'm going to get off of here and cuddle with the husband! Hope you all had a fantastic mother's day!

Chugging Right Along

So, we are now going to San Francisco every week on Mondays for dilations. They gave us the next 2 months worth of schedules for surgery and then we will take a look at where to go from there. We'll be on the road again to head down there on Mother's Day. Hes doing great with the surgeries and tolerating them pretty well. He now gets treated with popsicles after every surgery thanks to the nurses. They want to see how he tolerates it. He doesnt mind.

I am planning his birthday which is coming up next month. I can't believe it! Where did the time go? It's incredible that he's going to be 2 already! We are doing a funky, cute monster theme. I'm excited but a little frantic too. We have a lot going on right now with the trips and everything else. I hope it all falls into place. We are doing it at our house with friends and family. I'm really happy that he's home with us so that we're able to celebrate with him.

Yesterday, Brayton had his first try at a straw, and wouldn't you know, he took right to it! We've tried sippy cups but Brayton couldn't figure out how to suck properly, but with the straw, he took right to it. Looks like we'll be investing in some sippy cups with the straws. He'll be stoked.

Well, Destiny has homework, and then ballet, and a softball game so we have a full evening ahead of us. I'm going to get off of here and help her out. I'll update next whenever I can. I am using my friend's laptop right now so it's rare I get to hop on here.

Home at last!

We are home from San Fran.We got here a little before midnight. Surgery went well, and they got home dilated to a little larger than the width of a pen. Small, but still progress. When he woke up, it was the best so far this time. They had Spongebob waiting on t.v for him and a yummy popsicle he was able to enjoy. They had to poke him about 8 or so times for an IV until again, getting one in the neck, but he was asleep before they gave the IV. One interesting keepsake we walked away with...a penny they found lodged in Brayton's esophagus! Yup, you heard it right! It's really common for children with his defect to get things lodged since the space there is so small. Things that children without this defect would just be able to swallow down, get stuck for some of these children. Brayton is like a little vacuum, trying to eat up everything on the ground, and I thought I was pretty dang good at catching him when he tried to sneak one by me. I missed this one!
It didn't affect him in any way and he could breathe with it just fine but it's still a little mind boggling to me!




His next surgery is next Friday at 9am.

After surgery, since Brayton was in such good spirits, and our friend came along with us and had been at the Family House the majority of the day, we decided to stop at Pier 39 before heading home. We had icecream cones, and looked at the boats, water, different shops, performers, etc. It was sunny & windy and felt good. It was a bummer that Destiny couldnt be there but every time I go to San Fran, it's either a school day and I dont want her to miss so I leave her with her dad or it's his custodial day and she can't go. Im going to upload some pics later from the surgery but right now, I'm ready for bed! Night!

We're here...

We made it to San Fran at about 10:30pm. That trip sure feels a lot longer than 5 hours. I can't believe we're going to be visiting those same roads every week! Our friend rode along with us since she has spring break from high school, and the kids love having her around. She is going to stay with Nikiya while Rick & I take Brayton to surgery in the morning. Kids aren't allowed on the pediatric floors at the hospital any more unless they are the patient, so usually Rick or I have to stay at the Family House with the other kids while the other takes baby to surgery. I'm glad we both get to be there this time.

Brayton's asleep surprigingly. I wasn't sure he would with how much he slept on the way down. I'm glad he's resting, he will have extra strength for surgery in the morning. We are heading home after surgery is over, hopefully it's not too late.

I am beat, so I'm going to hop into bed. Ah, bed. Sorry, now I have the visual in my head and my eyes just don't want to stay open. I will update you all tomorrow if I can. Thank you all so much for thinking of Brayton during his journey.

Onto another chapter

Alot has happened since my last post. Child Welfare, Brayton broke his foot, increased SF trips...pure insanity! My computer is down with a virus, so I'm using a friend's laptop so ignore the typos if I miss them, since I'm not used to the little keys.

We missed two appointments with UCSF due to Nikiya ending up with impetigo and also our car being in the shop with bad brakes and rotos, that ended up costing us $600. San Fran called and gave us a hard time about missing those appointments, and said if we missed anymore, they were calling Child welfare on us. I was irate, and insulted. We have an upcoming appointment this Friday for a dilation for Brayton, and they had told us as long as we made it, they wouldnt call them. They called them anyways and I met with the Child Welfare lady today. I was so nervous but I had nothing to worry about. Im so relieved! San Fran & CWS explained that basically they were brought into this situation to hopefully be able to help with resources in making sure we get Brayton to these surgeries. Although it's in a negative light, they aren't juding or looking at our parenting, which they expressed wasnt even in question. That made me feel a lot better. The case will be closed in a month as long as we are able to make it to all of his appointments. UCSF informed me today though, that we will now be taking Brayton for surgery every week! This is going to really be tight, but we will get through it. We have so many wonderful, supportive people in our lives! Thank you to all of my fellow FC's and all of my other friends who have supported us through everything.I am trying to figure somebody I trust to come to SF and stay with me to watch Nikiya at the Family House so I can admit Brayton to the hospital and stay with him so that we will be there for all of the dilations since they are now so frequent. Rick would have to stay here to work. The only person Im comfortable doing that with is my mom or sister, so we are trying to figure something out. It seems like the only logical thing to do financially but I'm still not sure if that is possible at this point. So, thats the recent scoop on the days of our lives ;)

Dang Car

Our car is having problems now. I don't think the road trips are helping it any. We need to find out what's wrong with the car and get it fixed before our next trip, which is coming up in 8 days. Not quite sure how we'll work that one out. It's just so frustrating!

We will be leaving the 29th and come back the 1st or 2nd, then time to get things set up for Easter!

Home Sweet Home

We're home from Brayton's 2nd dilation. It went well, although Dr. Lee said that was still pretty tight & there was scar tissue. He said he got it opened to about a pen width, which to me, sounds smaller than last time but I guess it's pretty similiar. About a pinky width. I'm guessing it started to constrict a little more just in those 2 weeks in between dilations. They had a hard time getting an I.V (we didn't know this until afterwards since they do everything in the O.R and we're not allowed in) so he was stuck 15 times total. They finally got the I.V- in his neck.




Last time they put him to sleep before they attempted an IV so I'm hoping they did the same this time since it took so many times. Dr. Lee told us that if we can't see better results, we are going to have to do even more frequent dilations, and try some different techniques. Fingers crossed that things get better! His next dilation is scheduled for April 1st. April Fools Day.

Well, it's been a long day, the little guy is in bed, and Nikiya is awake since she slept most the way home, so I'm going to go lay down with her, and watch a little bit of Princess & The Frog which we pre-ordered a long time ago, and just received today! We saw it in theaters, & the girls adored it.

Goodnight everyone!

Up, up and away we go!

We are heading to San Francisco tomorrow after Rick does a half day of work. His dilation is Friday morning at 8:30am, they told us to arrive at 7. We should be heading home Friday or Saturday, depending on what time he gets out of surgery & recovery. I am so tired for some reason, I feel like I haven't slept in ages, and I still need to pack, so I am going to make this short. I will update when we get home or if there are any laptops available at the hospital.

Somebody Call the Waa-mbulance

We are having some marital problems right now. The issues revolve around trust & honesty, and they are things Rick has done recently. Not cheating or anything revolving that kind of betrayal, but lies, no matter what kind, hurt & do damage as well. Rick wants things to work, and he refuses to leave or give up on us. He's the thing that holds us together in times like this. Well, I should say his (sometimes annoying) stubborness is. I know he loves us, and I love him but marriage isn't only about love. You need respect, honesty & team work. I want it to work, I really do.

But. Throwing this in with the recent news that we will have to be going to San Fran every other week, where Rick will be missing out on work, which means less pay, more bills, and the fact that we spent money re-doing some of our house & paying old bills, and having some fun with the money before we knew we'd be having to do more back & forth again. I wish we could have known ahead of time. The stress of traveling, juggling Ricks job, Brayton's surgeries, & doctor's appointments, Destiny's school, & both girls activities, and now finances is just getting to me. We were doing okay financially & things felt so smooth flowing. It was easy sailing! Now, I feel like we're about to slide into the same hole we were in before, and not just with money. Brayton was doing so well & I felt like things were "normal." Now he has to undergo bi-weekly anesthesia, surgery & waking up confused, in pain, and angry. He freaks out afterwards, more upset than I've ever seen him. I wish I could take it all away for him.

I guess the point of this post was that I'm losing my patience, and I feel like a really crappy mom today. I seem to snap at the smallest things, and afterwards I feel terrible. I love them, more than anything else in this world-all of them, but it's so hard sometimes to be home with them every day, day in & day out, and to have Brayton pulling all the dvd's, pots and pans, books, and anything else he can get his sweet little hands on, out (which I know is totally normal at this age, and Im normally able to go with the flow just fine) while Nikiya stands there and jumps up and down screaming at me because something isnt going her way, and Destiny is being mouthy and not minding. I just want to pull my hair out, and moments like this, the days I feel about to burst, I wish I knew a better way to take a step back, and suck it up and deal with it gracefully.

I know people have it worse off, and I'm not trying to be a big whiney baby, but today, I just had to get it out before I end up ranting & raving to myself. ;)

Surgery scheduled.

The new surgery date is next Friday at 8:30am. We have to be there at 7 for check in. We are hoping to head home the same day. Braytons been eating some baby food every day now, and I can't even explain how happy being able to feed him makes me.

We finally have a Urology appointment scheduled for March 30th for a re-assessment to make sure he still needs surgery. Surgery will be set from there. Hopefully there's no more snow, or mud slides in the road. Scares me!

Oh how he missed this!

Guess what we're doing?





Can you tell he missed eating? He's one happy boy!

To Reschedule or Not to Reschedule?

The weather is horrible on the way down to San Francisco. There's a rock slide on one of the roads, which blocks off the main way down so you have to take a very narrow, very windy, long way to get there, and there are chains required and snow. I am considering rescheduling for next week since we aren't used to driving in snow (we never get any here, don't own any chains, and also Brayton has a yucky nose, and a small cough. They usually don't like to do the procedures when they're coming down with something. I think I'm going to call and get the surgeons opinions before I make my decision. I don't think a week will be too much to postpone. We'll see.

I've been repeatedly calling urology for an appointment for Brayton, and no one is returning my calls. I'm getting impatient. He needs to have surgery for an undescended testicle, and he will be getting circumsized while they're down there, and he's put to sleep. We had asked them to do it when he was originally in the hospital but they kept forgetting to once he was under anesthesia for other surgeries. I want this taken care of as soon as possible!

We have to pick up Nikiya since she (unfortunately) went with my mother in law for a week. Thank God her husband & my sister in law are there to watch her. The mother in law is so unreliable. Nikiya was dying to go though, she loves spending time with her cousins. I never let her go with the mother in law, so after much of Nikiya crying & begging, I caved. I regret it though. I miss my baby and want her home. She sounds like she's enjoying herself though. I guess that helps.

Here We Go Again

I just started this blog today, but it's been a long time since I've had a big update in general. We've moved into a different house, a three bedroom finally! Brayton has his own room, and the girls are sharing. Destiny is 6 1/2, Nikiya is 3 1/2 and Brayton is now 20 months. He is walking, talking some, and into everything like every other kid at this age. He weighs about 28 pounds, and is wearing size 3T clothes. He's almost as big as Nikiya!

My husband is working as an exterminator now, he has been there since August of 2009. They know about Brayton and the need for trips to San Francisco and work with us with everything. Rick has his own work vehicle, and we now have steady, reliable income, and things were really looking up for us. We got on our feet finally since Braytons birth, and we've been enjoying all of this time we've had as a family.

Brayton was eating by mouth for a while, only pureed baby food, but it was a start. After about three weeks though, I noticed the food was coming out immediately, before he could even really swallow. I called San Francisco and we ended up going down there for a swallow study. Most kids with Brayton's defect end up needing these surgeries, called dilations, to open the esophagus since it tries to heal, and starts to constrict. Brayton had never had one before, and we were hoping that this would show it was just some fluke. In Brayton's case, it seems as if his case is never straight forward. It turned out, he did need a dilation. I've heard from other people though that a dilation is a pretty standard, quick procedure and that we'd be able to go home the same day.

We went for his first dilation March 5th, last Friday. We waited for four and a half hours before he was called back. Finally at 2pm, he went back for surgery. An hour later, he was out and in recovery, still sleeping. The surgeon came in, and she told us that Brayton's esophagus was closed to the size of a pin point! How was he breathing? It's amazing. He hadn't appeared to be struggling at all. She tells us she was able to stretch it to the size of her pinky, but that we need to come back next week for another one, and then every other week after that for some time. That was a shock to us. We definitely were not expecting that. So here we go again with the frequent trips, and hospitalizations. I don't mean to sound ungrateful and whiny but I just wish he didn't have to go through these things. When Brayton woke up from surgery, he was angry, and rightfully so. His throat hurt, he was groggy from the anesthesia and they had given him some Versed to try and keep the pain level down. He was delirious, and didn't know what he wanted. He kicked and screamed and cried. We tried to hold him and comfort him but he fought us off, yet wanted us when we put him down. He arched his back, and swung his little fists at us. I had never seen him this upset. He spit up some blood which scared me but is normal considering they just stretched his esophagus. Finally, after we left the hospital and almost reached the Family House, he quit screaming, and finally seemed to get back to himself. He slept the rest of the day and by the next day, was fine.









We are heading down again tomorrow since his surgery is Thursday morning. We have to check in at 8am, and he will go back around 10am. We are going to try to head home the same day so that Rick doesn't miss too much work. I am not looking forward to this trip again. It feels like we just got back. Well, we pretty much did. We came back home three days ago, and we're off again! I hope he's not so upset this time around. It was sad to see him so worked up.

At this point, the surgeons don't know how long we will have to travel back and forth every other week. They said they will assess him with each dilation, and go from there. I just hope it's not long.

My first entries from the beginning

May 12, 2009

Before 2008, I thought our family was complete. We had two beautiful daughters,Destiny & Nikiya, but my husband insisted on just one more. He just had to have that boy and he was so sure that this time, he would have a son. I insisted that there were no guarantees, but wouldn't you know, he was right. Brayton Eric Lester was born June 30th 2008. That day would completely change my outlook on life as I knew it.

The pregnancy, at first was like the others besides the fact I had to take Progesterone supplements until 13 weeks pregnant to help keep my pregnancy. I have a history of miscarriages, and the doctors were hoping this would help. I was tired, and nauseated, and cried at infomercials but I was also excited about what the future held for us. Looking forward to decorating a room for a son, the Ladies Man slogans on little man clothes, being able to hold, dress, breastfeed, cuddle and smell the sweet baby smell of my first boy. We had fun painting the letters for his room, laughing, eager for his arrival. We wondered which clothes to choose and how the girls would adjust to their new brother.

When I was about 21 weeks, I noticed that at each doctor appointment, my weight gain would fluctuate tremendously from one appointment to the next. The nurse said it was normal, but I felt it. It couldn't be. I had never gained ten pounds in one month. I'd been eating right and taking care of myself. At one of the next doctors appointment, I was measuring larger than I should have been, so the doctor ordered an ultrasound. They mentioned there was extra amniotic fluid, but didn't seem concerned at all. One of my midwives addressed the issue, saying that it was nothing to worry about, and that was that. The weight fluctuations continued, and I knew something just wasn't right. I was worried, and started doing my own research. I googled "polyhydramnios," the technical term for too much amniotic fluid, and it kept coming up with something called, "Tracheoesophageal Fistula." I just couldnt shake this uneasy feeling. At my next appointment, I mentioned the excess fluid to my other midwife. Immediately she took action, and looked into my records. She stated it could be some sort of defect that prevents the baby from swallowing properly, or it could be nothing. She tried to be reassuring, telling me that two out of three times, women have extra fluid and it's nothing. She ordered one ultrasound a week to check my fluid levels, and one non stress test a week to see how baby was tolerating everything and if I was contracting or not. Once a week, I got to see the perfectly formed hands, the fluid movements of his legs, the perfect pout of his mouth. I thought how perfect he looked, could something actually be wrong? I worried constantly but tried to reassure myself by reading a lot about the possible defect, and telling myself that at the worst, if he had it, he would spend two to three weeks in the hospital, get his surgery and come home with us, at least according to the websites & other peoples stories with similiar situations.

My fluid levels got worse, and my stomach was extremely big. The doctors compared
it to carrying twins. It hurt to walk or move and everything took so much energy. I began to have problems with pre term labor and was put on very strict bed rest, taking Terbutaline every 4hours to stop contractions. They didn't knock them out completely but they eased up a bit. Rick had to stay home with me and help with the girls. He got laid off from his job, and my doctor told us it would be a good idea for him to stay home for now since I needed to be in bed, and should only be getting up to use the restroom. I would need help with the other kids, and I could deliver at any time, and I would need him close by.




Even with the bed rest, and pills every 4 hours, I still ended up in Labor & Delivery freqently. They had to give me shots of Terbutaline, ontop of the pills I was already taking to stop the frequent contractions. It was a temporary fix but at least it was something. The good news was,my cervix wasn't changing much.

The doctor ordered me to two non stress tests a week, instead of the previously ordered once a week, because of all of the complications.My body was always contracting, and the fluid was not letting up. They gave me shots for our son's lungs, and told me there was no way I was making it full term. The first goal they gave me was 31 weeks. What a joy it was to pass that mark. The next goal was 36 weeks. If we could get to 36 weeks, they would not stop me from delivering.

On June 29th, at 35.5 weeks, I went for my
weekly ultrasound and my fluid level was the highest it had ever been.

Normal fluid levels are usually around 20-21 and mine had hit 30. I went to the hospital for my NST, and of course, I was contracting. It wasn't anything different
than usual though, until they decided to check my cervix before they released me. When I had checked in for my appointment, I was 1cm, now I was 3cm. I was admitted to the hospital. Things moved very slowly with the labor, and the next day, I was 5cm and wasn't experiencing any pain. I thought things were going pretty smoothly. The time came to check my cervix again, and they told us that the baby was still high in the uterus, but my amniotic sac was bulging. They told us the doctor needed to be present when the water broke, so he would need to do it himself. Since our son was still high, and there were large amounts of fluid, if it broke on its own, it could rush out so quickly that our son's cord would come out first, and we'd have to rush to the operating room for a C-Section. He said it was still a possibiity, but as long as he was present, they'd be able to move quickly if I needed surgery.

The Dr broke my water, and thankfully it went according to plan.The amount of fluid was unbelievable and the flow never completely stopped once throughout the entire labor. After they broke my water, things moved quickly, and the pain quickly followed. I labored in the shower, on an exercise ball, and eventually got back into bed, where I eventually pushed, cussed, cried, and groaned,and finally, Brayton was born. I waited to hear that cry. You know the one. The beautiful, loud, "my lungs work and I'm alive mom" cry. I was greeted with silence. I was in so much pain still, it took a minute to realize. Where was my son? Why didn't they hand him to me like they had with the girls? Something was wrong. No one was telling me anything
and finally, I heard it. I heard a cry, and was handed our son. He was purple and not making much noise. Before I even got to study the curves of his face, they were taking him away again. They rushed him off to the NICU without any explanation.

I was sitting on an icepack, asking the nurses repeatedly what was going on. They told me the doctors were having trouble stabilizing Brayton's breathing, and when they tried to pass a tube down his throat, it wasn't successful. A lightbulb went off. I remembered reading on a website that
not being able to pass a tube through the throat was one of the major warning signs
of the TEF defect. I asked her, "What about TEF?" She asked me, "What TEF? Does he have that?" I told her the signs I was referring to, and I reminded her of my polyhydramnios, and how it was a definite possibility. She left quickly, and the next news I received was that I had correctly diagnosed my son & that he did in fact, have TEF and that he was going to be flown to San Francisco that night. What do you say to that? I couldn't breathe. People I didn't know where going to come
take my brand new baby away from me. I knew he'd be getting the help he needed there, but I wanted him with me! I couldn't stop crying. This wasn't in the plan.

I couldn't bring my son into my room. I was wheeled to the NICU for a visit. I was able to hold him, stroke his head full of tangled, silky black hair. Feel his soft skin, and watch his chest rise up and down with every breath he took. He looked perfectly fine. It was hard looking at this
perfect little person and imagining something wrong inside of him. I barely noticed the small tube (called a repogle) they had in his mouth to suction his spit and secretions since he could not swallow them. What the TEF means is that his esophagus was not connected properly, and a common defect that goes hand in hand with that is EA (esophageal atresia), and that is where the trachea and esophagus are abnormally connected and anything that our son swallowed, would go directly into his lungs.

We took pictures, took turns holding him and trying to enjoy every minute. Try to put off the what if's, and the could be's and cherish the minutes we had before the helicopter came. The helicopter was delayed, and we were told he wouldn't be leaving until the next day. I was up all night with him, in the NICU with this sweet baby of mine. There was no way to sleep.






The next day, they came to get him. My husband and I cried. I've never been one to cry in front of people, but the tears were uncontrollable.It was so hard to watch these people load my 1 day old, 6 lb 7 oz son, into a transportable warmer, and hook him up to all of these monitors. It hurt to watch through this plastic, my sleeping son, so unaware of what was going on in the world around him. So innocent, and beautiful. It hurt to know they were taking him away where I couldnt be close to him, I couldnt make sure they were taking care of him right, I couldnt make sure they were supporting his head properly, or being gentle enough with him. Would they notice if something was going wrong? They're professionals and of course, they know what to do, but I couldnt convince myself of it.

After they left, we were discharged. I was sore,and it hurt to walk, but the empty carseat in the backseat hurt the worst.
I wanted my son. We went home as quickly as possible, and threw our bags together, dropped off my oldest, Destiny with her dad (different than my husband)had to leave our other daugher, Nikiya with family, and started our 5 hour drive to UCSF. When we got to the hospital, we found our son. He was on the very top level of the hospital, 15 stories up. It seemed like it took forever to get there.

He couldn't eat orally so he was receiving his nutrition through IV. At 4 days old, on the 4th of July, he had surgery to fix his esophagus.One end of his esophagus was connected to his throat, the other end to his stomach but they were not connected to each other. They had to connect them, and also had to cut an area where his trachea and esophagus were connected since they are supposed to be 2 seperate tubes. After surgery, the surgeons told us it went well, they had him reconnected but that it was a far stretch between the two ends.
He told us he had to keep sewing and sewing to keep it together. We kept our hopes high though, and we took comfort in the fact, if all went well, we'd be taking him home within weeks. He was on a ventilator that was breathing for him, with monitors all over his chest, oxygen probe on his foot, a chest tube in his side, and his IV for his "food." He was heavily sedated on Morphine, and they had put him on a medicine which paralyzed his small body so that he could not move and disrupt the repair.


It was scary to see him like that. We couldn't hold him. We could only watch, and comfort with words, and gentle touches. He never opened his eyes. I started to wonder if he ever would. What color were they? How would he know we were there? How would he even know who I am? They took him off the ventilator mid July, and started to wean the sedatives. Finally at the end of July, he opened those eyes of his. He saw us. We saw him. I fell in love all over again.


They were doing xrays to make sure things were looking okay, and they noticed a small amount of air in his chest. They thought it was just left over from surgery, and that it would clear. It started to look worse. We noticed one day that his CO2 levels were high, really high, and that one side of his chest looked swollen. They didn't know what was going on and the surgery team rushed up to take a look at him. They had to decide what to do. The decision was surgery. They rushed him down, and opened him up to try and figure out what was happening. The news was devastating to us. The repair had ripped completely apart, and his chest had filled with air, collapsing one of his lungs. They couldnt fix the repair, and just had to sew each end of the esophagus shut to prevent any more air from accumulating. So once again, his esophagus wasn't connected, and this time, we were even farther from taking him home than we were to begin with. What now? How could this happen?


The surgeon told us this had never happened to him before.He never had a child have a leak with their repair, let alone the whole thing ripping apart. He apologized repeatedly. He was sincere, and I could tell he felt awful. I didn't blame him, but I was angry. Angry at everyone and everything. Brayton had to wait. Wait for his esophagus to hopefully grow closer together over time, giving them chance for an easier repair. Wait for the tissue to heal and get stronger. They placed a feeding tube so that he could receive my breast milk since he still couldnt eat by mouth. We stayed in the Ronald Mc Donald House for two months in San Francisco. We had been able to pick up one of our daughters, but we still couldn't be with Destiny since she was in school and couldn't miss all of this time. We missed her so much, and we tried to explain the best way we could to our almost fuve year old, why she couldn't see her baby brother, and why we weren't home yet.

They kept doing studies to see if the ends of his esophagus had grown any closer together. They didnt want to risk surgery until they were sure.Every time, we heard the same thing. They'd do another study in 2 weeks to a month and see what it looked like. They talked about transferring him to the hospital close to home. Something I was extremely nervous about since we live in a small area, and the doctors here and aren't familiar with cases like Brayton's.
Brayton still had the repogle in his mouth to suction his secretions. If it got clogged, he couldn't breathe, and we'd be in trouble. I felt the doctors in our town
just wouldn't know what to do and that most likely, wouldn't react quickly. The
day before they were supposed to fly him to our hometown, he coded.
His repogle clogged, he couldnt breathe, and he had to be rescesitated. They had to do chest compressions, and they fractured his rib. My son had a fractured rib at just a few months old. I couldn't complain though, he was alive. Without those
aggressive compressions, he would have died.

They canceled the transport, and decided he was too unstable to go back to the hospital at home. I almost lost my son that day. It was terrifying. Eventually Rick, Nikiya & I had to go back home. Our bills were mounting, our other children needed us, Rick had to get a job, we were going to lose our car and our lives were falling apart in every sense of the word. I didn't want to leave him. I couldnt bare to walk away from him but we had no choice. I couldnt stay alone since I didn't drive, and if I had Nikiya, I couldnt go to the hospital since she wasn't even 2 years old yet.

We left and made trips back and forth frequently to see him. I brought him breast milk, and left bags & bags of it for him at the hospital. We enjoyed our time with him but it was always so hard to leave. He had several episodes where he coded. He needed chest compressions, CPR, epinephrine toget his heart beating again.
Any of those times, I could have lost him and I wasnt there for him. He was going through so much, and I couldnt do anything to make it better. I couldnt heal him. I was feeling selfish. I envied pregnant women, and newborn babies I saw. I questioned why this happened to us,I was angry alot.I'd see someone breastfeeding their new baby, and I'd break down,I'd see a sweet newborn nuzzled in their carseat, I'd cry.

Study after study, test after test, poke after poke, it didnt bring us any closer to bringing him home. Around Jan 2009 he started having more and more episodes where he couldnt breathe, and needed rescesitation
and after a rough one, he couldnt take it anymore. He ended up on a ventilator again. This time, it was because his body couldn't handle it anymore. He was tired.
I thought he might die. With every episode, it had become harder and harder to bring him back, and this time, we just couldnt wait anymore. He had to be repaired-now!



The surgeons decided they had to take him down and do thes best they could. They could not risk him having any more codes.


Jan 15th, they did his surgery again. This time they said it went great. We were skeptical but trying to remain optimistic. He was on a ventilator but this time with no repogle. One less tube on that beautiful face.We stayed with him for a while, and since things were looking good, we had to head back home. I hated those goodbyes.
It took awhile but he came off of the ventilator, and I saw his face. It was through a picture email one of the nurses had sent me. They saw it in person before I did. Sure he had oxygen still in his nose, but he had nothing on his mouth. No tape covering half of his face, no big tube in his mouth, I could see him. All of him. He was beautiful. I cried. I was overwhelmed with joy. Joy that the surgery was a success, that he was alive, that he was free of all those uncomfortable tubes and tapes. The nasal canula came off after a while too, and he was free.


They did studies to see if the repair was still looking good. For the most part, it was good news. It held together wonderfully. However, there was a small leak in the repair site. He couldn't
eat by mouth until this is healed but he could still come home! Home! I never thought it would happen.On March 24th 2009, it did.

We had to watch a few videos on how to care for him, and go over things with the nurses, but by this time, we felt we were ready.We felt confident in how to care for him. We said goodbye to all of the amazing people who had been such a huge part of my son's (and our) lives, the people who had held my son when I couldnt. The people who read him books, stroked his hair, and gave him kisses when I couldnt. We were sad to say goodbye but so happy to say hello to the beginning of our lives together.
Our friend Angie, came & took pictures of the day we were able to go home. Pictures I will cherish always.



Brayton has been home for about a month and a half. We have had to go back and forth between home and San Francisco for
studies to see if the leaked has healed, check up appointments, and he also ended up in the hospital from aspiration pneumonia. We were down in San Francisco
for a week for that, and once he was off the oxygen, we were able to head home again.
Eleven days ago, he was admitted to the hospital in our hometown for pneumonia. He started to get better, but the nurses kept feeding him through the wrong tube despite the many times we had to show them, and explain to them what they had to do.
He ended up getting worse because of it. He ended up with aspiration pneumonia ontop of the viral pneumonia he was admitted with. He then had to be airlifted to UCSF again. We are still here in SF right now, but Brayton is doing much better and we should be heading home in a few days. Tomorrow he has an esophogram to check on the leak.

Hopefully this will give you an idea of how special Brayton is. How blessed we are to have him in our lives. How lucky we are that he is still here today. How amazing he is to pull through all of the things he's been through with nothing more than a few scars, and a big grin. Our family is complete.