New Blog

I started a new blog: Here

It's the post-nightmare blog. The nightmare shall be relived there, but with insight rather than panic.

Changes

I'm so incredibly pissed. I just found out that one of the best people we have at work is leaving the company for another job. I should be happy for her... right?? In a way I am, but how this all came about is so wrong in so many ways.

She (C) has been a wonderful person to work with. She has been a rock when we all needed one, she has bailed us out more times than I can count, she is trustworthy, ambitious, and wise beyond her years. She has a level head and can tame the most terrible beasts. She is a treat to work with.

Her mother works at the company also.

She (B) has been bad. I heard throught the grapevine that some mischef has been transpiring. That rumor was then confirmed at a later date by a credible source. If I heard about it when I haven't even been at work, then you know it's bad. B has been having an afair with the bossman. As far as I can tell, this has been going on for quite some time. The wife of the bossman works in the office between B and the bossman. Bad bad bad bad bad.

Wife found out. Bad bad bad bad bad.

Money was offered to B to leave the company. This offer was refused - her position within the company changed.

Poor C. I can't imagine what she has been dealing with. I'm sure she was in a completely awkward place. I hope she is able to move onto greener pastures. She will be missed. As far as I'm concerned, the wrong person is leaving.

Bummer.

I'm not crazy...

I want to start out by saying that I'm not looking for sympathy - I just needed to put this out there so you all will know why I haven't been around much and haven't been participating as much as I would like to. I just haven't been very social.

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I knew there was something wrong. DAMMIT!

We have been through a nightmare to get this diagnosed, but here it is...

Payton has a mild form of Glutaric Acedemia Type 2 (GA2) or Multiple acyl CoA Dehydrogenase Deficiency (MADD). What this means is that he is not breaking down proteins and fats very efficiently and is urinating them out instead of using them to gain weight. It is a rare genetic/metabolic disorder that can be fatal if not caught early enough and treated. http://www.fodsupport.org/ga2.htm

There is no cure, but the devistating effects of it (brian damage, seizures, ticks, floppyness, etc.) can be kept at bay with supplimentation of carnitine and riboflavin. The addition of these two things will break down fats and proteins so he can gain weight.

This on top of the GERD and the colic. Oh... and he has a floppy epiglottis which will possibly need surgery to correct. I also found out that I had placental insufficiency and basically he stopped growing in utero in August. That was horrible to find out...

I am so at the end of my rope. I have been accused of starving my child and of child abuse and neglect. Munchausen syndrome by proxy has been tossed around. I swear it is the absolutely WORST feeling ever to know you are doing EVERYTHING in your power to make your child gain weight only to be scrutinized like that. I have broken down too many times to count. I feed this kid every two hours during the day and every four hours at night along with rice cereal. He has everything a baby needs and more. He wants for nothing. I've put over three thousand miles on my car diving back and forth to Children's Hospital and all of his other doctor appointments. I gave up my $60,000.00 a year career to dedicate my life to figuring out what is wrong with this child. I understand that the doctors have to ask questions like that because there unfortunately is such a high incedence of it. And (case in point)... people like a girl on a mom's website I go to who may be starving her children to sell WIC formula on ebay which I find apallingly disgusting. All I can say is thank goodness for Zoloft. Sanity through chemicals.

So... I was right. I had to be presistent with the doctors to find out the answers. When I felt we were being blown off I had to fight even harder to get what I needed. I had to ask question after question and I had to educate myself to figure out what questions to even ask. I'm worn down and frazzled. But I'm glad that we are beginning to get this all figured out. I'm sure this is not the end of it, but at least we're on the right track.

I have to add that the team of doctors I have been working with are amazing. I'm so glad that I am able to utilize some of the best doctors in the country. They have been wonderful. I just had to find the right ones. I'm very glad Payton's pediatrician is such an advocate for him (and for me). I would be back at square one without him. I think I talk to him more than I talk to my own mother!

All this being said... Payton is the light of my life. I love him so much. I never thought I would give up so much for somebody and not even care. I don't even remember life before he was born. He is getting bigger and stronger every day because of me and there is no better feeling than that in the world.

He LOVES rice cereal!!!
















Here is how much he has grown. The blue outfit is what he came home from the hospital in and the green one is what he fits into now.

Sick Baby - Part 4

**Originally posted November 12th, 2005.**

Whew. What a long week.

Thank you all for your well wishes and prayers. They worked.

So far the diagnosis is severe GERD (gastro-esophogeal reflux disease). I'll take that. I can deal with the Prilosec twice a day until further notice. It could be up to two years or more.

On Wednesday, they scoped him under general anesthetic. That was absolutely the worst. All looked good anatomically, and there was healing irritation. They did a bunch of biopsies to test for allergies. I'll find out the results of that on Monday.

Honestly, at this point, I think that he is just extremely sensitive and needed the three days without food to rest his digestive tract and heal. There is nothing worse than watching your child waste away because he won't eat because he's in so much pain, but I think we have turned the corner with getting the acid under control.

He's doing very well and is actually acting like a baby now. This morning he woke up and entertained himself with his fingers for about a half an hour without screaming. I can change his diaper without him screaming. He sleeps and wakes up without screaming. He'll eat and not scream. He'll quiet down with me just picking him up. He's never done that before. It's such a blessing to have a baby at last.

He gets 1.5 ml of Prilosec twice a day to stop the acid. He has to sleep on his side or his tummy propped at a 30 degree angle. He must remain upright for 60 minutes after a feed. I can't put any pressure on his tummy and he can't be in his carseat for longer than necessary or his bouncy seat at all because it will cruch his little tummy up. I have to record how much food he got when, all his diapers and any choking episodes. We have to brush up on our infant CPR as this now becomes part of the equasion.

For now he is getting my milk with Good Start formula mixed in to bump the calories. This bumps the calories from 20 per ounce to 24 per ounce so I can get the weight back on him. At least he's back to 6-1/2 pounds, but that's just too tiny for a 7 week old child. He needs to fatten up! If he starts vomiting again, I'm supposed to thicken the milk with rice cereal, but I hope it doesn't go that direction.

This has been very difficult, but the support here is awesome. Thank you.

Here's to healthy, growing babies!

Sick Baby - Part 3

**Originally posted on November 8th, 2005.**

I found out that the doc who was saying that "it's only reflux and they will send you home" was the night on-call doc and she had no idea what we had been through and all of the details of his case. She can take a flying leap off a cliff for all I care.

I spoke with Payton's primary care physician today and he said there is no way they will send him home until they figure out what is going on. He's lost a half a pound since Saturday and that is a huge deal for a baby his size. He goes nowhere until he gains some of it back and keeps gaining and can feed on a regular basis without screaming.

He had his GI consult today and they spent about an hour and a half asking questions and poking about. He's getting another ultrasound tomorrrow looking for something neurological in his spine and also a scope test to look for anatomical abnormalities in his GI tract. If the esophagus is damaged, they will give him an NG tube to feed him so he can heal.

They are looking for things like pancreatitis, something metabolic, enzymatic or anatomical. They are covering all the bases they can. I have been asking lots of questions and I feel much better about the course of action that has been taking place. It just takes time. All of his doctors are very concerned about him and are doing everything in their power to fix him.

He's been eating a bit - they are trying him on a hypo-allergenic formula to see if he may be reacting to something in my breast milk. I got 15, then 20 then 8 ml's down him over the course of about three hours. He still fussed, so I'm not sure that it's that, but we'll see. This is the most he has eaten since Saturday.

I did find out that the surgery for the reflux is "last resort" because it is considered a major surgery. He would have to have a drainage tube sticking out of his chest for a week and they would have to slice away part of his stomach to wrap it around the base of the esophagus to tighten the valve. Yikes.

I do feel better today, but it has been extremely difficult. The doctors are hoping to have a concrete diagnosis by Thursday. These things just take more time with a little baby.

I'll update again when I find out what is going on.

Sick baby - Part 2

**Originally written on November 8th, 2005.**

They ran the Upper GI yesterday and did an ultrasound. They found they his Pyloric valve is at the very upper range of normal and will probably re-check it in a week to see if it has thickened more. If it has, they will probably do surgery.

He also has extremely bad reflux. Like scary bad reflux. Not within normal limits. It was amazing how much came back up. His poor litle esophagus is eroded and it hurts! This can be corrected by surgery as well, but this is a more major surgery and the probably won't do it because it's considered a surgery of last resort. Good Lord, how last resort do we have to be, how much weight does he have to loose, how much screaming does he have to do, how little does he have to eat to consider it last resort?

He hasn't had a full feed since 11:00 on Saturday and won't eat now - it's Tuesday. They had me try to breast feed. We got about two to three minutes worth of milk down him and then he screamed for 4 hours straight from the pain. His voice sounds so raspy from screaming so much. It's so sad.

He is now NPO (nothing by mouth) until further notice. The only time he is peaceful and quiet is when his system is completely empty.

The on-call doctor finally sent me home to sleep last night as I'm on the verge of a complete break-down. I've been pretty much asleep for the past 12 hours. I'm going to try to get a bit more sleep now and go in later.

This is so difficult. I caught wind of them wanting to send him home because "it's just reflux". How am I going to care for a constantly screaming child who won't eat? He won't get the fluids or nutrition he needs because I won't have an IV at home! He's going to loose the weight we worked so hard to put on him. He's already lost quite a bit and is back down to around 6 pounds. That's too small for a 7 week old child. This is nuts.

I have no idea what to do and I swear I'm going to loose it. I'm trying so hard to be strong, but even I have my limits. I've darn near reached it. I want him fixed and I want him home.

I just called and talked to his nurse, and they are doing a GI consult today. We'll see what happens.

I'll update tomorrow.

Thanks for all of your support. I truly appreciate it.

Sick baby.

**Just catching my thoughts all at once. I'm transfereing this from another site.**

Payton is in the hospital.

He has had non-stop projectile vomiting for three days. He is very dehydrated. He has been screaming non-stop for days too.

The doctors think it may be Pyloric Stenosis which is the thickening of the pyloris which is the valve between the stomach and the small intestines and this is stopping the flow of food into his intestines. Unfortunately this is not considered an "Emergency" so they won't do the Upper GI and Ultrasound until tomorrow (not and emergency?!?!?!? )

It is easily corrected with surgery, but this is a lot to take in. It's very hard to deal with knowing that my poor baby boy is in pain and will be for a while.

They will also be looking at the possibility of very very severe reflux and some sort of bowel obstruction as well.

He's not eating either, so he is in a lot of pain, but he is getting enough fluids and nutrition through his IV.

My husband is finally home (he was out of town all last week) and he is with me, so I'll be OK ...

Just Like a Baby... Only Smaller.

I would have to say that one of the hardest things I have ever had to do was leave my baby boy behind at the hospital. As a friend used to say... "It sucked beyond all suckdom."

He was so tiny. At 4 pounds, 6 ounces and 22 days early, he was still missing the skills to suck and eat. The poor little guy was so darn hungry that all he did was scream. It was one of those screams that will tear down any new mother in seconds.

He couldn't latch on to my breast - not that I was making any milk anyway - and he was horrible with a bottle.

A full-term baby with all of thier gear in place will drink about 60 to 90 ml in about 15 minutes. Payton was drinking between 10 to 20 ml and that would take an hour.

I knew that something would have to be done. There was no way Rick and I would be able to deal with this at home. Finally the pediatrician said that he would need to stay in the nursery overnight to get some food down him.

The news was very hard to take. Here you are - all ready to start your new life - and then the rug is pulled out from under you. You know it's for the best, but it still isn't easy.

So off we went to the I.O.U. The nurses down there were great. They showed us how to force feed him with a bottle - make him do the sucking motion with his mouth by manipulating his jaw with your fingers after waking him up completely by stripping the poor little guy down to his diaper. Yuck.

One night turned into two. Finally he was maintianing his weight, but it was a struggle. We were able to take him home on Sunday morning.

There were, however a few upsides to this nightmare. The first, being the obvious of him needing the extra care and learning how to eat. The second, not so obvoius upside was that Rick and I were able to make the home transition a bit more smoothly. We were able to make his space comfortable and prepare for him because we didn't have time to do that before he came. We had two nights at home alone so we could recuperate and get ready for him to come home.

I must say that it was so hard to get your hopes up. Every time we would go visit him in the nursery (45 minutes away) we would think that he was coming home. Three times we went and came home with no baby. Three times we had the car seat all ready and his bag packed with no luck. When we finally could bring Payton home, we had left all the gear in the car!

So yes - the boy was tiny. Even the little hats that they have at the hospital were too big for him. The nurses had to tie a knot in the side just so it would stay on his head. He was in premie diapers for a month and we had to buy premie clothes because he was swimming in the newborn sizes. The beat part is that we get to have him little little for a longer time than most. We're getting more milage out of his clothing now. BUT - I am rather bummed that his awesome Halloween costume is way too big. Oh well. He'll have a better one next year.

22 Days Early

There were a few things that I knew the second I got pregnant.

1. That I was pregnant with a boy.
2. That he would have blonde curly hair.
3. That he would come early.

Bingo on all three.

September 21st started out like every other day before it. I was excited because it was going to be my last day at work before I started my maternity leave. I was looking forward to having about two weeks or so to myself before I "changed jobs". I was planning on sitting by the pool, finishing the nursery which was still in boxes from the move and painting a bit. I needed to buy some last minute items for the baby as well. Our bedroom was still in boxes - most of my clothes and bathroom stuff.

I had an appointment with my OBGYN at 10:30 that morning, so I slept in a little bit, ate a good breakfast and left the house at 9:45. The doctor checked me and I was (in doctor's terms) 90% effaced and 2 centimeters dialated. He said I could go any time. At that point in time I was having contractions every 30 to 45 minutes - not a big deal. I could walk around like that for two weeks. So I went into work to finish up some last minute paper work and pack up the last of my personal stuff from my desk.

When I got to work, I knew I needed to go home. I was there for about an hour. I left at 12:15 to drive home. On the drive home, I was getting contractions every 10 minutes and they were getting stronger.

I got home about 1:00 and ate a turkey sandwich, a brownie, a big glass of water and went to go lay down. I figured I was just over-tired and when I rested the contractions would go away.

Boy was I wrong.

At 1:30, I felt a pop on the upper left side of my belly. Holy shit, my water just broke. I ran to the bathroom and there was blood. Lots of blood.

Rick was at work. His cell phone broke and I didn't have his direct line at work. I called his parent company and they gave me the number for the LT at TRADET on the Amphib Base. Thank goodness he answered. He tracked Rick down and within three minutes he called me and was on his way home. The drive from Coronado to San Marcos is usually about 45 minutes to an hour. He was home at 2:08.

While I was waiting for him, I was busy packing a bag for me, a bag for the boy and a bag for Rick. I had NOTHING ready. Rick come barreling up the stairs in a panic. He was too cute. I was relatively calm despite the fact that I was going to have to give birth sooner or later.

We got out the door by 2:30 and we were on our way to the hospital. Rick was timing my contractions on the way down. They were 2 minutes apart, lasting about 90 seconds. Can I just say OUCH???

We pulled up to the hospital, and made our way slowly up to Triage around 3:00. All I can say is that I was so glad that I wasn't one of those poor women that gets sent home or to the movies for a few hours because they came in too soon! They made me pee in a cup (I laughed at them) and then they hooked me up and checked me again. I was 4 to 5 centimeters dialated.

Hanging out in Triage was not a fun thing to do. I felt like puking and I was in a lot of pain. Rick went to move the car and got our bags. I swear that was the longest 15 minutes of my life. All I was thinking was that if I puked at that point, I wouldn't have to clean it up, and it would taste relatively tollerable becasue of the browine I ate. Good gravy, the places your mind goes when you hurt.

We got a Labor and Delivery Room at 4:30 and we were situated by 5:00. The nurse, Amy, gave me an IV and two rounds of something giggly in my system. I got my epidural by 5:20. It was a dream. She told me that her shift was over at 7:00 and she would probably be there for the delivery of my baby the next morning.

I told Amy that I felt like I had to poop. She checked me again at 5:45 and I was 10 centimeters dialated and the baby's head was very low. Amy had me push once to see what was going on and told me to stop. Stop. Stop.

All hell broke loose.

They found a doctor - Dr. Diamond - and in an instant, the bed was broken down and the NICU team was there and the lights were on and there was a flury of activity. I guess the baby's heartbeat was dropping too low during the contractions so they put me on oxygen.

They had me hold back for quite a while. Finally I was able to push. 11 pushes and the boy was out.

Rick got the whole thing on video. He was crying. I was crying. The nurse was crying because Rick was crying. It was the most amazing moment ever.

Payton James Wallace was born on September 21st at 6:42 PM.
He was 4 pounds 6 ounces and 17-3/4" long.
Just a peanut of a baby.

He has blonde curly hair and I'm placing my bets on green eyes like mine.

The Move

Holy shit was the move to our new digs horrible.

Yes - it got done and I got in OK (more or less unscathed) but the process to get there was no less than chaotic.

I knew it the second the movers walked in the door. They were surly and nasty and it pissed me off. We had these same two guys move us last time and they were great. I couldn't believe that they were such dickheads this time.

I guess what happened was that the person who answers the phone and books the jobs seriously underestimated the time that it would take to move me. They showed up at 7:30 that morning and were supposed to start another job at 11:00 after they had finished my job. Yeah, right. They were beyond pissed, and the only person they could take it out on was me.

Oh - and I was never told that all they would take was cash. That was fun. And I couldn't get in touch with Rick. He wasn't answering his phone. I needed money so I wrote a check out of his account into mine and made a huge withdrawl. Thank goodness the bank opened at 9:00 on Saturday not 11:00. Good Lord.

They movers started to refuse to move any of Ricks gear bags that were in the garage. They "weren't in boxes". Goddammit, motherfuckers. I'm 9 months pregnant. Do you expect me to move them by myself?!?!?! Finally my Italian Long Island loudmouth friend showed up to help. They moved the bags. Thank you Christine. I will forever be grateful.

Finally I had had enough. On the way to the new place, I called the moving company and asked their scheduler to take them off the afternoon job (which was bigger than mine) because the guys were so bent out of shape. If they were pissed off now, I knew that they would be beyond pissed when they got to the new place with three flights of stairs. I told him my situation and that I really couldn't handle the attitudes around me. Please do something so they won't be so nasty. They got taken off the afternoon job. The attitudes got better.

Again, Christine came to the rescue. She unpacked my entire kitchen. Mom played traffic cop with the movers and Dick assembled my rocking chair and some other things.

About 4:00 I was done. I needed to lay down and rest. I needed to take a shower.

Ahhhh... a nice hot shower.

Nope.

The pilot light which I thought was lit for two weeks was not. And after three tries it still wouldn't light. Goddammit.

At this point it's 6:00 PM. I call SDG&E. They say they'll be out sometime before midnight. Goddammit. They show up about 45 minutes later (thank you!!!) and there was so much air in the line that it took over 30 seconds to bleed it out. They guy pulled out a huge crescent wrench and twisted a nut and out it came. Definantely something I couldn't have done on my own.

Hot water by 8:00. It was the best shower I ever took.