The Long Of It

I hate it when I go to Birmingham when it’s raining. The only other trip it was raining was that first trip down. On that time we found out about all the tests that we would be doing. And what was in store for our little one. All subsequent trips weren’t the easiest in the world but the sun was shining which made it a little easier. Tuesday though was awful. There were tornado warnings and flood warnings, I just knew this wasn’t going to be a good day.

After my surgery on October 17^th Rayne started to get sick. Not too bad at first but it slowly go worse. There was a lot of vomiting, crying and doctors involved in the process. It was a virus that reeked havoc on our little girl and left her with a paralyzed stomach. Paralyzed stomach is often temporary after a virus and just means that the body says “I’m taking a break. Don’t bug me” So Rayne was on a liquid diet for just about a week and then she started to eat. And I mean eat! She would eat almost as much as I would at a meal. Almost a week this lasted and Rayne put on two pounds. Then she stopped.

Honestly we expected it to happen eventually. It was just so much food we thought that maybe she was just trying to catch up. But she started to get really fussy and acting like her reflux was bothering her. Rayne didn’t want to lay down, she would arch her back pick at and pat her chest all day. The oddest quirk was that when I would snap up her sleepers at the top most snap she would fuss. We made sure that all doses of meds were given on time everyday (Prilosec twice a day, Axid three times a day, Pepicd once a day). We even through in some extra doses of Carafate which coats everything and is more about comfort than suppression. This didn’t help. I called the nurse at the Gastrointestinal doctor and she said to try giving the Carafate an hour after her other meds. It could be coating enough that her meds aren’t absorbing. We gave it a week. We were a little better but if a dose of anything was missed heaven help us all. There was no way around it Rayne needed to see the doctor.

Tuesday it rained, and rained, and rained. Our appointment wasn’t until 4 so I closely watched the weather reports and decided to pack enough things for us to stay overnight. Besides the weather I didn’t know what the doctor was going to do. If we needed to stay to run a test I wanted to be ready. It’s a 90min drive each way I didn’t want to have to come back for a test if I didn’t have to. The whole drive I just knew something drastic was going to happen that day and as I started to pass car accidents requiring tow trucks and ambulances I started praying really hard that an accident wasn’t it. We made it to the doctors safe and sound though.

Rayne weighed in at 18 pounds 2 ounces 28.5 inches long! Later I found out she made that chart with that, 1%. WAHOO!! Once the Doctor King got into the room I could tell he knew what his next move was. Sometimes I hate that feeling, because well it’s not always an easy thing the doctor is about tell you to do. Then came the words, “I think it’s time for a Fundoplication.” I had heard this word before and I knew it was a surgical procedure where part of the stomach was wrapped around the esophagus to help the sphincter close properly.

The reason we have to do surgery is that there is no other medical option. Rayne is maxed out on all of her meds. With this much medication she shouldn’t need the Carafate five times a day, a month ago we didn’t have to. Something has changed, what no one knows, but medicine isn’t going to cut it anymore. There is no point to Rayne suffering until she ‘grows out of it’ because that often takes years. Anywhere from 3-6 years. Not only is that hard on baby but mommy and daddy. Giving meds 8 times a day doesn’t get any easier as a child gets bigger. Also Rayne is still classified as failure to thrive. Which is not uncommon for kids with sever reflux because the meds can block nutrient absorption and they don’t want to eat much because it hurts. So it made sense.

Then Doctor King said, “That’s not the bad news. The bad news is you have to do one last test before the surgeon I want to do it will. It is called a pH probe.” He then went on to explain that I would take Rayne to the hospital have her admitted and she would have a probe fed down her nose through the esophagus and it will sit right at the top of the stomach. The probe stays in for 23 hours. It measures exactly how much, how often and how long acid gets out of her stomach. This is for a definitive diagnosis and the surgeon wants it because he’s not one to cut someone open just for the heck of it. And as I’ve read about it, this test can also help with some of the decisions the surgeon has to make. It’s no fun to have something down your nose and to make it even more awful Rayne has to be off her suppression meds for FIVE days before the procedure. Thankfully we can still use the Carafate every four hours but still, it’s going to be a long week. We are trying to get the test set up to happen in Huntsville because it would be so much easier on us, but we will see.

After the pH probe it will take a few days for the information to be complied and then we will make an appointment with the surgeon and set up the surgery. The surgery itself is an hour or less but will require a two to three day stay in the Children’s Hospital in Birmingham. They have to watch for complications and in infants it is not uncommon to put in some kind of feeding tube, since they have no desire to eat. But we will get more information about that when we meet with the surgeon.

Right now we are in a holding pattern because of the holidays. Most offices were closed so nothing has been scheduled and we have no idea how quickly this will happen. It could be all be said and done by Christmas or surgery may not happen until January or February for all we know.

So for now Rayne isn’t eating a lot. What she eats she keeps down; thankfully she was never one to spit up because of reflux. Only when she’s sick do we have problems with things coming up. And the doctor told us to give her whatever she wants to eat. If she wants all pasta let her have it. It’s an acid absorber, but more importantly it will keep her happy. Fruits and vegetables can be hard to digest so if she doesn’t want them don’t force it. Just keep her from losing weight and hydrated. Also if she wants to sleep sitting up or on top of us, just do whatever we feel is right and keep her as comfortable as possible.

You can also check out these link for more information
http://www.youtube.com/watch?v=J8ATpSWQrIE
http://www.youtube.com/watch?v=9bnIuKiHdDE

And so it begins

I have started my countdown. 32 days...

32 days that I will try NOT to stress out about what I need to get done.

32 days that I will hopefully keep my focus

32 days to think about what is going to happen

32 days is so far yet so close

On October 17th I will be having surgery. Nothing overly major... I hope. Okay let me back track and try to make this a little clearer.

As everyone should know just over a year ago I gave birth to my wonderful baby girl. What you may not have heard or remember is that the actually birthing part was very tough on my body. I was in no serious danger but I can clearly remember the doctor telling the nurse, "I stopped counting after 50 (stitches)". Later when the doctor came to check on me she described my birth as a vaginal c-section. There was a lot of tearing, bleeding and damage.

Due to several things I did not heal very well. And now I need some repair work. Surgical repair work. We won't know exactly how extensive it will be until the day of. But what we do know it that I will be flat in bed for a good week and on restriction for at least a week after that. If not longer. Joy, oh joy.

Thankfully we have some wonderful mothers that are coming to help. The first week Fred's mom will be here and Fred will be off work. The second week my mom will be here, but Fred will be back at work. So hopefully I'll be a little more mobile so I can help watch Rayne. Maybe go do a couple of fun things too.

Overall recovery is going to be key. If I try to do too much I could pop stitches again, cause more damage and we might have to do this all over again. But if all goes well then I may fulfill my dream of a natural child birth. But will just have to see.

Well I hope that was the right balance of details for everyone. If you want more you can contact me directly. Then if I'm in a good mood I'll give you some ;)

All and all that is the news.... 32 days.

Arriving on Time- LaRayne's Birth Story

September 3rd

I had been having contractions since 9am and the furthest they had ever been apart were 10 minutes. They weren’t overly strong but I could tell they meant something. I was also starting to get rather short tempered, which is a sign that I’m suppressing more pain than I’d like to admit too. Mom had called around 8pm and based on what was happening and how I was doing she decided it was time to come on down. If she ended up being early it was okay, but she didn’t want to miss it.

9:30 pm - Arrived at hospital

The monitors where hooked up and we had an interesting surprise. I wasn’t haven’t contractions every 10 minutes, they were every 2-4 minutes. I guess I really was ignoring my pain… oops. We were informed that my doctor Dr. Cimino was out of town until Monday and that Dr. Petersen was covering for him. Dr. Petersen requires full monitoring and IV fluids at all times. This was very much not the delivery I wanted, I left a doc for this, but Rayne wasn’t going to wait.

11:30 pm - Decided to stay and deliver baby - 2 cm dilated and 60% effaced

We knew that it would be harder to labor on the monitors and it wasn’t what we had planned but that’s birth for you. Also when we were told I was only 2cm dilated we started to have concerns. I was 2cms at my appointment on Monday and I had been having decent contractions most of the week. Fred and I had been trying everything to augment labor naturally. That day we walked nearly 3 miles at the mall. With all this work and still only 2 cm the idea of having to medically augment labor became a real possibility.

September 4th

2:00 am - Mom arrives

My sweet mother drove through the night to help us through labor. And she was put right to work. Helping to massage my back, rotate my hip and just simply comforting me to help me get some rest. Mom and Fred took turns supporting my back while I was bouncing on the birthing ball and rubbing my hands to keep them warm.

4:30 am - Nurse Beth does pelvic exam during contraction that stimulates labor

It worked, but it hurt too. The nurse wanted to do more but I was determined that I could get labor to progress and it not be so painful.

6:00 am - Dilated to 3 cm and 80% effaced!

Slowly but surely there was progress. But the monitors were really starting to get in the way. The one that is for contractions was absolutely horrible. The belt was so tight that every time I had a contraction it would push into my abdomen and I would feel like I needed to throw up. It was bad enough that I was starting to have a fibro flare right around the monitor. I ripped it off at one point and told the nurse, I don’t care what the doc says that belt isn’t going back on. Eventually the nurse brought in some large wide surgical tape and taped the monitor to my belly. That was a whole lot less pressure. It still hurt some but nothing like it did before. I noticed that having either monitor on cause pressure and made the contractions feel worse. But that could just be me.

9:00 am - Dilated to 4 cm and 90% effaced!

6 Hours on the birthing ball were paying off. The doctor said that I could go off monitor for a while and take a walk around the floor. We figure Dr. Petersen gave into my no monitor desire because I was finally progressing and if I can get my water to break on my own it’s one less thing she has to do. Honestly I didn’t care her reason I was just glad to be off the dumb things.

9:30 - 10:45 am Contractions changed to sharp pains and hard to breathe through

I just thought the contractions were getting stronger like everyone said they would. Slowly I was getting better at working through the contractions. Keeping my breathing steady, not too shallow and not too deep. Thank goodness mom was there to help guide me. At this point I had pretty much been awake for 24 hours and what few brain cells I have were certainly not working.

2:00 pm - Took a walk around labor and delivery to stretch muscles

My poor legs, by this point I had been sitting up, sitting on a birthing ball or walking for 12 hours or so. For the first time in my pregnancy my legs and feet were swollen. After one trip around the L&D Floor I was ready to head back to my room. Sadly I couldn’t get comfortable lying down so I was still up on a birthing ball but that is less pressure than standing.

1:30 pm - Having trouble breathing, decided to administer pain medication Nubian to alleviate pain

Oh these were just awful contractions. I had lost the strength to work with the contractions. They were just pain and they were working me. Every contraction was unable to breathe, like a vice was placed around my chest. I would break into tears and only after the contraction was over was I able to talk or breathe again. The fibromyalgia was rearing its ugly head, coupled with exhaustion, my body was giving way. Mom noticed the extreme trouble I was having and she informed me it was time to get something for the pain. Had she not been there I probably would have kept going like that for another hour before recognizing I needed help. And that’s not because Fred doesn’t care or wouldn’t have noticed the trouble I was having but he was trying really hard to be supportive of the birth I wanted. So he would have let me call the shot.

Once the Nubain was in I was able to really relax and I even dozed for 20 minutes. The longest I had slept in nearly 30 hours. I could still feel the contractions but since I could breathe through them I felt a new energy and that I just might make it through delivery alive. Extreme and irrational thinking I know, but what else is new.

2:00 pm - Doctor Petersen arrives and says no more Nubain, LaRayne did not react well, if I want to keep doing pain meds we have to do an epidural

The Nubain put LaRayne to sleep too. But it made her heart rate drop a little too low for the comfort of the doctors. It was not dangerous but low enough and often enough that it was concerning. It took me a few minutes to process is new information. Especially since I was tired and drugged, but thankfully mom and Fred were there to help me talk it all through.

2:15 pm - Decided to go 100% medical, epidural and the doctor breaking water

It didn’t take a lot of talking to come to this decision. We all knew that my body was tired and I just wasn’t progressing very well on my own. I’d made a grand 2cms in 14 hours. The baby and I were going to need medical help to get through this. Our bodies just weren’t communicating and working together.

2:30 pm - Epidural is administered

Thank goodness for the Nubain, which was pretty much gone by that point but I wasn’t in such agony that was easy to sit up and take the little pinch that comes with the epidural. And really that’s about all that hurt and then some pressure with it going in. I did feel like smacking the anesthesiologist. He walked in and said “Why anyone would want to feel pain is beyond me, and its nuts.” Just because he has an advanced degree doesn’t mean he has the right to insult my choices. Ug doctors.

3:00 pm – Pitocin drip is started and water is broken by Dr Petersen

Pitocin was interesting. They started me on a does that was too high and I started to feel clammy and sick. Luckily Dr. Petersen was standing in the doorway and notice that I very quickly turned a pale gray. They got me on my side, brought my head down, and checked my blood pressure. My blood pressure had dropped to just below normal. They leveled the pitocin and my pressure started to come up. Was stabilized they put in a catheter and broke my water. Didn’t feel either, which was kind of cool.

4:50 pm - Dilated to 7cm

This was a relief to hear. It would have been awful to do all of that medication and not make some serious progress. I wasn’t really feeling the contractions at this point. But I was noticing that every time a contraction showed up on the monitor I’d kind of half black out and I’d feel the need to take a deep breath. It was a very strange feeling and I complained about it almost every time. I didn’t like it at all.

5:40 pm - Started having oxygen to help with labor

My complaining must have triggered something in mom because she started watching my oxygen levels. And when I’d have a contraction she could see my levels drop to or below 95. Then during the rest periods my levels would be up to 99-100. So mom asked the nurse if we could put me on some oxygen. The nurse did and took an alcohol wipe and rubbed it on my chest to see what areas I could feel. The epidural had moved up instead of just down, so my lungs were being numbed. They sat me up and got the oxygen going and we were able to stave off anymore problems. I’m happy we got the epidural but I’m glad we didn’t get it sooner because I would not have wanted to have labor for a day that way.

5:50 pm - Dilated to 9 cm

I could tell when I was contracting at this point. I could feel the pressure in my belly but it still didn’t hurt too badly. They called that doctor to let her know she should make her way up to us. The nurse said she’d be back in 20 minutes to check on my progress.

6:00 pm - Dilated to 10 cm

There was no mistaking the feeling that I wanted to bare down, or push. But of course I breathed my way through it and waited for the doctor. Very quickly mom grabbed the nurse saying we weren’t going to make it to 20 minutes. Sure enough I was fully dilated and they were stat paging the doctor.

6:15 pm - Started pushing with Doctor Petersen

Before you could say “Bob’s your uncle” 3 more nurses where in the room, they had taken half of my bed off and made it into a labor bed. It looked like a completely different room. As I look back on it I honestly have to remind myself that it was the same room. I was never moved, it’s kind of freaky.

7:25 pm - Attached vacuum for help with one final push

That was a long hour, even though I had no sense of time. I was able to push any contraction I wanted too and sometimes Dr. Petersen would encourage me to push during certain ones because she could see the trend on the monitor. Progress was pretty slow; LaRayne was not positioned well into the birth canal when we started pushing. So I had to push her into the canal and then we could start pushing her out. LaRayne also kept shifting her head so she would fall back a little after every push. Finally I got LaRayne to a place where they could attach the string vacuum and I was starting to show serious signs of tiring. I was back on the oxygen, and my legs were starting to go numb. Then the moment came, and what a moment. In a single major contraction, my epidural wore off, the vacuum was attached, and LaRayne made her entrance into the world.

7:30 pm - Baby LaRayne is born!

I said “Hello Darling” then she was taken out of my sight for all of her testing. They delivered the placenta as quickly as possible and Dr. Petersen started to work on me. And it was work for the both of us. I had to do my best to stay calm and still and Dr. Petersen had to start some serious sewing. I had several internal vaginal tears that needed immediate attention. Quickly she called for a dose of Nubain, then 2 doses of Versed and to get the anesthesiologist in there for more epidural medication for me. Eventually all the meds were on board and the doctor was able to finish her work.

8:45 pm - First breast feeding session

As quickly as the room had been changed into a labor room it was changed back into a normal room. Because of my complications they put me on extended watch which meant that were staying in that room instead of moving into a post-partum room. They did get me one of the softer beds, which was a challenge getting over to the new bed. My legs were dead weight and my arm strength was shot. As soon as I was in my new bed I was handed my baby girl and we were able to breastfeed for the first time. Although we only got about 5 minutes on each side before she fell asleep it was great to feel her latch on to me and really bond as mother and daughter.

LaRayne Darcy Kaestner

9/4/2010

7:30pm

20.75 inches

6lbs 13 ounces

Complications

First off let me show you the surgical photos. The first one is of my bone spur. Each of those little bumps is a spur, which had to be ground off. The second picture is the fluid that was in my shoulder. That nasty stuff they suctioned out so clean fluid could move in. That's what the third picture is.

As for the complications:
Of course I can't do anything the easy way. That's what got me into this predicament in the first place. I had to have complications with the surgery. Nothing too major. But not exactly fun. The first one wasn't really what you would call a complication more of an annoyance. When I went in for surgery they put a nerve block in my shoulder so I wouldn't feel my arm after the surgery. This cuts down on the pain, but sadly since I'm thin and healthy it only last about 12 hours instead of the anticipate 18-24 hours. I felt very jipped. On top of that the prescription that they gave me wasn't strong enough without using my Cryocuff 24hours a day. At least the pain kept me from moving around too much. Saturday Fred and I went over to my parents to see Janelle and Julie while they were visiting. We also had the opportunity watch General Conference as a family. Okay I slept through most of it but I did try to stay awake. Here is where the first complication showed up. In the form of a rash. I was starting to itch around my bandages and then the rash complete with lesions and bumps showed up all up and down my arm. So we took off the surgical bandage, only to see that indeed I was reacting to the adhesive. And the betadine they used to clean my skin for surgery had soaked into my skin and my body did not like that. Janelle and Mom scrubbed down my arm best that we could with alcohol. Fred had to work that night so I stayed over with my parents just so everyone else felt I was secure. Around 1am the itching was unbearable so Mom spent the next hour scrubbing my arm with alcohol and dove soap. We also lined my sling with some cotton fabric so my natural movements weren't rubbing against the rough fabric of the sling.
Sunday during the day was rather uneventful. Fred came back over after second session, originally the plan was to take me home. But I still had a very bad rash and needed lots of help doing things. Since Fred had to return to work Monday morning it was decided that it would be best for me to stay with mom and dad a few days more. Which turned out to be a great idea considering we ended up in the Emergency Room that night. My chest had started hurting in the late afternoon, I didn't think much of it because I have a history with this type of pain. As the evening progressed I got worse and worse. Eventually it interfered with my breathing. At about 10pm I couldn't take it anymore and the ER was my only choice that that time. After a full battery of tests it was concluded that I had a Chest Wall inflammation and the rash was a mild reaction to the betadine. I was sent home with a much stronger pain medication, an anti-histamine, and a cream for the rash. Boy oh boy did I sleep well that night.
Monday Mom took me to my PT appointment and to the house so I would have clean clothes while I was at their house. My physical therapist said that I can come out of the sling while I'm at home for a few hours a day when a I'm not really doing anything. To help build my muscles back up. But in public I have to be in the sling to just make sure I don't try to use it just yet and so everyone else knows that they can't touch it. Over the next 6 weeks I'll work my way out of it. But I was given the okay to shower. Showering is difficult and painful but nice to scrub clean.
Today was sleep day. Monday I did way too much and I spent today sleeping it off. I've been up for about for almost 5 hours and I'm ready to go back to bed. It's kind of sad. My rash is looking much better. It's stopped getting worse and it's no longer red. There is still some itching but not nearly as bad.
All in all I'm still rather wosy and wobbly. I will probably remain under the watchful care of my parents for a couple more days. I told mom that she didn't have to do all this and her response was "Just take care of me when I no longer can." I love my parents :) And of course my husband. It's hard on him to have me away, but he is keeping it together like a trooper. Well that is the end of any coherent thoughts for now. Until next time...

There is Hope Again

Yes folks I am happy today. Which honestly I'm usually pretty happy but life has just been a little rough lately. My car had to go to the shop, almost all the computers around me needed work or new parts. The house is still a mess because we've been remodeling and poor Fred has just been busy as busy can be.
My biggest issue has been my WONDERFUL shoulder (can't you just smell the sarcasm). My cortisone shot wore off and all my progress was gone. I have a constant burning in my shoulder no matter how much physical therapy I do. I'm just kind of stuck with limited mobility and even more limited strength .
Well today was my three month follow up with my Orthopedist. He was glad to see that I had descent range of motion and strength but it's not where it should be after three months of therapy. So he did a few pressure tests to see how the core pain was doing. Oh yeah not fun for me at all. He told me I had two options we could keep with the physical therapy but it will be a very long road. Or I could have surgery, or course surgery is not without it's risks and there is no guarantee that it will work but it's a shot at a fuller and quicker recover. Well Folks Surgery it is. Now before you start going all sad say, "you poor thing" or "oh no" please know and understand that I am stinkin' excited about this. Like I've said it is a terrible being limited right now. And my heart leaps that there is something else to try. It gives me hope and then if it doesn't work at least I know that I have done all I can do. That I can live with it.
The sadistic and masochistic side of me is not only am I having surgery I'm have cool surgery. ;) First of course they are going to do a Shoulder Arthroscopy. Which is when they take the scope and insert it into my should and do all the repairs that way. Although the MRI showed that everything was in tact it could have missed something or there could be new damage. Also my doctor said he'll scrape off any bone spurs or calcification. The whole point is to repair and widen the space in my shoulder so it has the space it needs to heal. Then he is going to go into another part of my arm with the scope and do a Biceps Tenodesis. This is really cool to me. The Bicep Tendon usually attaches in the shoulder cavity well since we are trying to create space he will cut the tendon and pin it to my Humerus bone. My arm and shoulder will still work just fine but when I flex my massive muscle (ha!) I won't feel the tendon pull into my shoulder.
That's the news folks. My surgery will be October 1st at 9am. I get to be at the new hospital, it's only 2.77 miles from our house, at 7am and will be home later that day. After-wards I'm looking at about 6 weeks in a sling. So yup I'm excited, and I laugh about it too. In talking to my doctor and doing some research I found that this type of surgery is usually done on people who are serious throwing athletes, major accident victims or people that are in their 40s. I fall into none of those categories I was getting into a car. I am talented!!!! Don't you all wish you could be like me? LOL!

Fred's Minor Surgery

WARNING!!!!!!!!!!!
THERE ARE FAIRLY GRAPHIC PICTURES INCLUDED IN THIS POST!

So today Fred had a sabaceous cyst removed. A sabaceous cyst is a closed sac below the surface of the skin that has a lining that resembles the uppermost part of a hair follicle and filles with fatty white, semi-solid material called sebum. Sbum is produced by sebaceous glads of the epidermis. (according to Wikipedia). Well Fred has had this one for several months, we had an MD friend of ours look at it when it first appeared and he said that unless it starts growing it should be fine. And sometimes they go away on their own. Well a couple of weeks ago this sucker decided to have a growth spurt and cause Fred pain. So Fred saw our primary care doctor and he scheduled a time to remove. Thank-fuly the cyst decrease insize and pain inbetween the original visit and the surgery. So at least Fred was more comfortable.
The procedure was pretty simple. Poke a big hole in Fred's face, drain it all out, remove the gland, and stitch him up. The only small complication was the cyst had started to be infected and eating the linning of the gland away. So there was some extra fluid from that. There was also a lot more oil puss than expected. They are sending everything off for biopsy. Just to be safe, there are not expecting there to be a problem.
But poor Fred is uncomfortable today. Even though they did give him a numbing agent he still felt a good deal of what was going on. Also he had a cavitiy filled Wednesday which is still a little tender and to top it all off his sinuses have be all out of wack. But overall he his being a real trooper :)




To reall look at the pictures I suggest double clicking the picture so you can see it in it's full size.