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!
Sunday, March 21, 2010
Friday, March 19, 2010
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!
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!
Wednesday, March 17, 2010
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.
Tuesday, March 16, 2010
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. ;)
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. ;)
Friday, March 12, 2010
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!
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!
Wednesday, March 10, 2010
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.
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.
Tuesday, March 9, 2010
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 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.
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.
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