The New Normal

Well Rayne and I survived another trip to Birmingham on Tuesday. It wasn't too bad, I think. I'm still adjusting to some of the news and we are still waiting for lab results to come back.

In general Rayne is doing okay. She is almost back up to 23lbs (she had lost a little weight during this last illness), and she is just shy of 33inches. Both stats are on the growth chart!! Wahoo!!! Rayne was also healthy for her appointment which was surprising for the Pulmonologist. He asked what I did and I told him Rayne just finished an antibiotic a few days before. The doctor laughed, smiled and said "Well that makes sense". I teased back that she'll probably be sick in less than a week, that's just how it works.

Which brings us to the main point of our story. Given Rayne's first round of lab work, her reaction to the Pneumonia vaccine, and the fact that this last cold didn't go away until she had a steroid and an antibiotic she definitely has an immune disorder. How bad it is we have to see how the repeat lab work comes back.

Now when most people hear immune system issues they think autoimmune disorders. Autoimmune disorders attack cells that are supposed to be in the body leaving nothing to attack the bad cells that invade the body. Making the body weaker and unable to handle illness well. Rayne has the opposite problem an Under reactive immune system.

Under reactive immune systems don't activate when a virus or infection invade the body. The virus or infection can sit and incubate for days or weeks before the immune system kicks in. But of course by then it's too late to kill the virus without the help of antibiotics and in Rayne's case steroids too. The other down side to the under reactive immune system is that it may not react to a vaccination properly. So if if Rayne is to get a vaccine it may not protect her from getting the illness.

What does this mean for our little family you may ask? Well it means we have to be a bit germ-a phobic.... urg. Fred and I have always been great believers that kids need dirt. That kids need to play outside, that it's okay if there is a little dirt under their nails every so often, that the house doesn't have to wiped top to bottom every week with bleach, bussed restaurant tables are clean enough, and if a kid at church as a runny nose it's okay to play with them. Well we have to change our way of thinking. Yes Rayne can still play outside but hands have to be washed/ and or sanitized a lot more. We have to work on keeping the house and pets cleaner. Wipeing down the places we sit and eat when we go out. The biggest things is we have to minimize Rayne's exposure to illness. Fred and I have to do the best to stay healthy, and not pass on anything we may pick up. We have to be careful about the kids play with Rayne and if they have runny noses or lots of coughing we have to try and keep her away. Pretty much we just have to act like parents of a newborn, but with an active toddler. Yup no challenge there...

What this means for our friends and family. Be prepared to have us come behind you to clean, to ask you to wash your hands, to see if you have any hand sanitizer, or not stay very long if you or your child is sick. Oh and we may smell "weird" because of the essential oils we use to try to keep everything at bay. We don't do any of this to be offensive but we have to do everything we can. As it is Rayne will probably be starting a low dose of daily antibiotics to help boost her immune system. But the more she is on antibiotics the more resistant she will become. Amoxicillin  is already non effective, and she has a long life to live yet.

In the next week or so the lab results should be back and we will know if anything else needs to be done. As for now this is our new normal.

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

The Best

So Fred and I are dorks. We have little code sayings and phrases that help us communicate. Some or them are obvious or silly and some are covert. A very common one "I'm the best wife/husband in the world". We use this phrase to communicate that we have gotten a lot done or we thought to do something without being asked. Some nights I tell Fred "I am not the best wife in the world" and this is my way of telling Fred my day has been a little rough and expect the house to be a wreck when he gets home. There are several reasons why I can have a tough night. A big one tonight Rayne...

We had a day full of things. So when we got home she was very tired and so was mommy. 45 minutes into Rayne's nap she started fussing. Needing to be held. I picked her up and we rocked. Next thing I knew Rayne was awake fussing again and it was 8pm. My foot was swollen from sleeping sitting up, Rayne was having a reflux attack and my contacts had dried out. We were in pretty sad shape.

The next three hours were filled with bottles, diapers, tears, medicine, cuddles, and Veggie Tales. The laundry is not done, dishes aren't put away, dirty dishes in the kitchen, and toys all over the living room. Most importantly Rayne was comfortably asleep. I am very still very sore and very tired, so the house work won't be getting done.

So tonight I am not "The best wife in the world." but I am "The best Mom in the world." I was there when my daughter needed me, and I'm going to go to bed so when she needs me tonight I'll be there for her then too. All in all life is really great :)

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.

Information

First off let me start with a disclaimer. This post is to inform everyone with the many going on's in the Kaestner household. But during this process you may find that there is too much info for your liking on somethings and then on other topics there may not be enough information for you. If you are interested in more you'll have to contact me directly and even then I may not give it up. Also I'm going to vent a little of my frustrations and thoughts, non of this is to offend anyone just to vent. So if you think you may be offended then stop right here.

Okay now for the meat of it.

First off it can be a long drive to Birmingham. It's only about 2 hours away but that first trip down to see the pediatric Gastroenterologist (Gastro) it seemed like forever. I had no idea what he was going to say about Rayne and what his ideas were about her not growing. It didn't turn out too bad. The Gastro was a very nice guy even though his name was Stephen King (No Joke). He listened very nicely to all or our concerns and ordered just about every test in the book. The blood was drawn that day and an appointment was made for three weeks later to have an ultrasound and Barium Swallow X-Ray done. And off we went to grab some lunch and head home.

Three weeks flew by and testing day came. Short story IT WAS AWFUL!!! Rayne was hungry, tired, and did not like being held down for her x-rays. Thankfully I could go in so I could sing to her and she would know I was there. We got the results later that day at the Gastro. The x-ray confirmed Rayne's reflux problem and showed an abnormality with her ovaries. Which meant another specialist. Urggg. On our merry way we went. Only to go back the following month for a repeat ultrasound and a visit with the Endocrinologist.

Our lovely Endocrinologist had the test results before we got to the office. Which were normal this time. She said it was not uncommon for children Rayne's age to have temporary cysts on their ovaries. Slight crisis adverted. But this meant no true answers. She wasn't to worried about Rayne's lack of growth because... "Well she is still getting taller." Really? Okay she is taller but did you see how tall she was to start off with?? You talking about how the child needs to stay on a curve and my child is almost a flat line. Oh well moving on. More blood was drawn and a return visit set up for January. The blood work checked her Thyroid, and Electrolytes. Both were normal. That made me very happy because Thyroid problems run rampant in my family and normal Electrolytes means Rayne is getting the basic food she needs. Lack of growth isn't from lack of food. Now maybe they will believe me when I say that she does eat.

Shortly after this visit Rayne's already iffy sleeping habits take a serious turn for the worse. Back in January Rayne had settled into a pattern that left me tired but was extremely predictable. Length of time and time of day were consistent almost to the minute. Around May things slowly declined. We tried more food, cooling the house, more cuddle time during the day. Sleeping with her at night. We even invested in a new sleep chair. Some of these things helped but never for long. In June Rayne started waking up every 45-90 minutes. Sometimes she would go to sleep with just a bottle, or rocking. Other times she would be up for 2-3 hours. And nap time was almost non existent. I didn't know what to do.

Since the biggest culprit seemed to be her breathing we went to the Pulmonolgist. Oh did that visit suck for some many reasons. First he bashed our family doctor, Dr. Richards, who I love and has be wonderful for us. He was the one that pinned Rayne with her condition and got us into the Pulmonolgist in the first place. Oh and Dr. Richards diagnosed Rayne by what we told him and being in the same room for 5 minutes. Rayne was seeing someone else that day but Dr. Richards wanted to check on her. So her was my Pulmonolgist saying that I needed to change doctors because Residents are dumb and we should have more specialized care. And Dr. Richards shouldn't be stumped by Rayne not sleeping. HELLO!!! Rayne currently has 3 specialist stumped. Why can't the Family Doctor be stumped too?? Secondly the Pulmologist tried to scare me into giving Rayne shots. Telling me stories and saying that kids die if they don't get vaccinated. Okay I'm not an idiot and I'm not not doing shots because I think the medical world is wack or I believe it will give my child autism or that they are useless. We are WAITING to do shots because first off family history. Both sides have shown a wide variety of reactions to shots. I get site infections and end up on antibiotics, Fred will get sick for nearly two weeks. Nope don't feel like putting my child threw that. Secondly, I am a stay at home mom who gives breast milk to Rayne. And if there is an outbreak I'm completely fine with quarantining in my house. Lastly Rayne has gets poked and prodded enough for reasons she can't understand. I'm not going to add to it if I don't have too. Anyway--------So I left there with no answers and really angry. I still like our Pulmonogist but I hope I never have to do that again.

A couple weeks later we went back to the Gastro. He actually wanted to help Rayne sleep. His thought was maybe her reflux wasn't under control and waking her up. So we left with two more reflux meds to see if that would help. Well it wasn't the miracle we were hoping for but things have gotten better. Rayne no longer needs to sleep in a chair, we have moved her into the pack n play! The sleep isn't perfect but we are up to four hour blocks of sleep more often. WAHOOO!!! There are still a lot of nights we have to sleep with Rayne in arms but it's a little better.

This past week Rayne got some sort of bug but we are on the up swing of that. Yesterday she decided it would be fun to get her first bug bites. Fire Ant bites!! She didn't even cry, but gosh are they nasty looking. We have a follow up with the doctor about her flu-ish thing tomorrow and I'll get the bites looked at too.

In Fred News

We finally have his reflux under control. It took three different prescriptions to find the right one but we got there. He also had to have a scope and they found several abrasions on his esophagus. That was why the pain of is reflux was so severe and long lasting. So a couple weeks of an extra med to help heal the abrasions and life is looking good. He is still battling some insomnia, but he is holding up well.

Fred has been really great at helping me out. I have to tell him exactly what I need but after that he is right there. Fred is also a great Priesthood leader. He is a driving force behind family scriptures, prayer and Family Home Evening. Are we perfect HA!!!!! But the increased frequency has brought the spirit into our home and during this time where really no one is sleep we are still getting along and peace is pretty well maintained.

For me, well Rayne's life is kind of my life right now. But there are a few highlights

--There are three times a day my life really stinks. Its when I have to give Rayne her medicine. I hope no one I knows ever have to do what I do.

--I'm so very done with people telling me how little their kids where and how just one day their kids where caught up. I understand they are just trying to be kind but what makes you think I want to hear about your child's growth spurt at 9 months??? It is kind of funny to say that Rayne is almost a year and watch those people's faces drop.

--I do LOVE how people fawn over how cute and precious Rayne is. A lot of that has to do with how little she is and how bright those eyes are but Rayne loves it when people smile at her.

Overall I wouldn't change my life. I know I can complain and be a worry wart but honestly I love my life. My husband is AWESOME and my daughter is FANTASTIC!! So really my life is rather great :)

Oddly Enough

Oddly enough I don't feel like I failed. Now I really have to reason to feel like I did but it's just one of those things that you would think you just might feel like a failure. Okay once again I should back up and explain a little more in detail.

So Rayne had her "4 Month" check up yesterday. I put it in quotations because she is much closer to 5 months than 4 but that was just when they could get her in. Any-who we went in and there was some good news and bad news. The good news is generally Rayne is healthy. No ear infections, no rashes, good movement. The bad news... can you guess?? That's right she isn't growing enough. Weight 11lbs 4ounces, Height 24 inches (They didn't tell me her head size). That's 3rd% and 25th% respectively. ekkk. Now I know some kids are just little but this plateau is not helping her get over breathing problem. I'm going to skip the details of that visit because well the fill in doctor just sucked and it was an awful experience. After the appointment while I was checking out Rayne was miserable I was almost in tears. The sweet nurses took one look at me and asked me what I needed and I told them I really wanted to see my family doctor. It was already 5pm so the double booked me into a slot for the next day so I could have a few minutes to discuss what we needed to do.

After a night of decent sleep, a morning filling at the dentist and Fred going to work early Rayne and I headed out to see the doctor. About half way there my phone rings and it's my doctor. He saw they had scheduled me to bring in Rayne and thought he could save me the hassle of waiting in the office and having to have Rayne poked and prodded again, and we could just talk through what to do about Rayne's size. Dr. Richards said he talked to the Pediatric Attending in the Peds clinic across the hall (we go to the family medicine clinic) about Rayne since there are several ways to treat slow growth. What the Attending recommended was half a scoop of formula powder (about 1/5Tbs) in 3-4 ounces of breast milk. Do this with every feeding. This will give Rayne 80-100 extra calories a day. Which should be more than enough to get her back on track pretty quickly, but small enough that when she does catch up she won't lose weight when we go back to just straight breast milk. I had a couple of questions and we just talked about how we were going to follow up with the calorie intake. We decided to go ahead with the little bit of formula for the next two weeks. At that point we will do a weigh in and see how she is doing. If she is still low, we will probably have to run a few more tests and find out if there is another problem going on. We are hoping for good steady growth so that we can see how long she may need the extra calories.

So I went and bought some formula, Enfamil. I've know a couple of people who have had success with that brand after breast feeding. And I had a $4 off coupon, oh and it came in a smaller can. Since we are using so little and once a can is open it's only good for a month I wanted to minimize the risk of waste. By the time we got home it was time for Rayne to eat and she took to her 'Fortified Milk' very well. I had worried about it being thicker and harder for her to swallow but she did just fine with it. That was only a few hours ago and Rayne has been napping most of the time so we will see how this all plays out.

But I overall I don't feel like a failure. If Rayne was 'normal' my milk would be enough for her both in calories and amount. Not to mention I wasn't crazy for asking all the questions I did. As my doctor put it, "I'm being a really good mom and I'm did absolutely everything I could for her on my own."

New Recipe

Today I discovered a new recipe, one I'm going to use daily for the next three months!

Bittersweet Love
Ingredients
1 Amazingly Precious Baby
1 Nebulizer
0.5mg/2 ml Budesonide

Directions:
1) Pour Budesonide into Nebulizer. 2) Hold mask over Amazingly Precious Baby's face 3) Turn on Nebulizer 4) Listen to Amazingly Precious Baby cry, while you continue to hold mask over Amazingly Precious Baby's face. 5) Once Budesonide is gone (approximately five minutes) take mask away from Amazingly Precious Baby's face 6) Turn off Nebulizer. 7) Enjoy some of the sweetest hugs and cuddles from Amazingly Precious Baby.

Can anyone guess we saw the Pulmonologist today? It was our scheduled two month check up. I was glad to report that Rayne has had some improvement. She isn't squeaking, she can play on the floor on her back, and she is sleeping much better on her belly. But we are still having some feeding difficulties, and general noisy breathing. Upon check in the nurse noticed that her weight gain isn't what it should be. What was her weight you may ask?? 11lbs 3oz, for you statistics buffs that hits just below the 3% line. So this of course was the main concern of the doctor, because she will grow out of this condition but she has to GROW for that to happen. Dr. Mahesh asked about her eating habits and I told him we were still doing 100% breast-milk in bottles and although we do have some feeding troubles she takes 27-30 ounces a day. Dr. Mahesh agreed that she was getting plenty intake, she must be spending too much energy breathing. Which not only makes it hard for her to grow out of her condition but it could delay other milestones as well. So how do you get a baby to grow? Make it easier for her to breathe of course. My heart jumped for joy that this doctor was more interested in treating the cause and not a symptom. Because I'm sure there are some doctors out there that would have told us to switch her to formula to fatten her up and assume the breathing problem would go away after that. I don't like those folks. So the medical supply company ran over a nebulizer for me, it took ten minutes for them to get to the doctors office, it was awesome not to have to go pick it up. We left the doctors office with a nebulizer, a prescription and a follow up appointment in three months.

After Rayne's nap we sat down to do the very first treatment. It wasn't the funnest thing in the world but it wasn't too bad either. She didn't care about the air or the noise but the Budesonide does sting which made Rayne uncomfortable. But as soon as the Budesonide was gone she was back to being all smiles. She wanted to be cuddled but she still was smiling away.

Overall this treatment is suppose to help ease her airways so it is less difficult to breathe and more energy can go towards growing. It of course will take some time but it is better than some other options and most certainly better than nothing.

That is the report for now.

PS- The mask has froggy eyes on it, that's just the one the delivery guy picked up. it was like it was all meant to be :)

Random Thoughts of the Day

Number Ten
Pharmacy Consultations should not be allowed at the drive thru window.
~~Two people in front of me at the drive thru had these~~

Number Nine
Apparently five shirts wasn't enough.
~~How many of my shirts I had to put into the laundry for one reason or another~~

Number Eight
If it wasn't for bad luck Sprocket would have no luck at all.
~~Fraggle Rock, watch it and you'll know~~

Number Seven
Are the only options giant and preemie?
~~Two nurse and three people at the store asked how early Rayne was born~~

Number Six
I think I know people who smoke it for less.
~~When I saw the price of Hemp Milk~~

Number Five
Sugar covered candy canes no matter what consistency is delicious.
~~After finding out that my peppermint brittle came out more like peppermint taffy~~

Number Four
Holding a sleeping baby solves so many problems.
~~Realizing that I haven't slept without Rayne in my arms for 3 days~~

Number Three
Timing is everything. And I only have it half the time.
~~Half the calls I made today were at bad times~~

Number Two
Driving school must not teach that you signal and
slow down when getting into the left hand turn lane.
~~I did this and someone honked at me for 30 seconds~~

And the Number One Random Thought of the Day
My Name is Rayne and I'm going to pump- you up!
~~While dropping off Rayne's steroid prescription~~

Just Shy of Perfect

Rayne is the most beautiful, sweet, lovable, precious, adorable little girl that there ever was. But we have discovered that she is just shy of perfect, but someday soon she will be. Oh I guess I should go back and explain.
Since birth Rayne has had this cute little squeak when she breathes, hence why we call her Squeaker. And she was never really fond of sleeping on her back. Then around two weeks Rayne starting sounding really labored in her breathing. So we went to the doctor about it and the doctor said to prop Rayne up when she slept or played on the floor. But it just looked like a cold. Later that night after our baby had been vomiting for 12 hours and still labored in her breathing we took her to the ER. After 8 hours of tests they decided that Rayne had a virus and sent us on our marry way.
Over the next few weeks as we traveled to and from Utah Rayne stopped vomiting but her breathing still sounded just awful. We tried cold night walks, humidifiers, vicks vapor rub, sleeping in the cold, sleeping in the bouncy chair, and sinus rinses. Nothing made it better, and slowly Rayne got worse. She wasn't sleeping well and the poor thing was just tired and uncomfortable all the time. Nursing had become extremely difficult with her not able to breathe and we switched to exclusively pumping and doing breast milk in bottles.
Finally when we got home Rayne was overdue for a well baby check and we took her in. At 6 weeks old Rayne had only managed to put on one pound and one inch. Although any growth is good the doctor wished there was a little more. The sent us off to get blood work done to make sure that there wasn't any infection still looming in her system. The next two weeks were filled with x-rays, blood work and more doctors visits. Every test coming back completely normal, but Rayne's breathing was still labored and noisy. Then the doctor wanted to try an antacid. After two days of diarrhea and no improvement of symptoms we followed up with the doctor, once again.
During that visit we decided not to continue the medicine and to go see a Pediatric Pulmonologist and to do an Echocardiography. The Echo was set up for the following week but our doctor didn't think it was her heart we just would rather be safe than sorry. The Pulmonologist would be the important one, which of course was the one we couldn't get an appointment for until late December. So I took the appointment and decided I'd figure it out when my poor girl wasn't so upset.
I took the weekend to pray about when needed to be done, and to just try to relax. My stress wouldn't do anyone any good. Monday morning I called the Pulmonolgist to see if there had been any cancellations and of course there hadn't been and the nurse said it was very rare that there would be. But if my regular doctor would call in and talk with the nurses they could asses the situation and if an urgent appointment was needed they could get us in. Well my primary care doctor is just the best. Even though he wasn't available to see Rayne during her appointments during this whole trial and error he watched her chart and stayed up to date on her condition. So when I called and told him how we could get an earlier appointment he was happy to do it. I was expecting to get an appointment in a couple of weeks but when our doctor called on Wednesday he got us an appointment for this Friday!!! What a relief to not have to wait weeks to be seen. And it was the same day as the Echo so we could just get all the poking and prodding done in one day.
Alright now we come down to today. Early this morning Rayne and I went to have her Echo done. And I was never happier that a test came back normal, and honestly it wasn't because heart stuff is never fun. It was because the doctor was an absolute jerk. In the 10 minutes we were there he managed to questioned my mothering instincts, my doctors conclusions and the fact that my baby was crying too loud for him. I was thankful I had done my research about the procedure or I would not have gotten anything out of him. Oh it was awful, but thankfully it was done and over with and I never have to go back.
After breakfast and a nap for both me and Rayne we headed down to the Pulmonolgist. When the nurses where doing all of her vitals they could hear the breathing problems. It was obvious to them why she was there. And then when they weighed Rayne she came in at 9lbs 5oz!!! That's just shy of a pound in a week, which put her right back on the curve for growth. Soon the doctor and the nurse came in and we had our little chat about symptoms and what had been going on. The doctor told me that Rayne has Laryngomalacia. Which is a 'soft larynx' and because the tissue is underdeveloped when Rayne eats, gets, fussy or excited the larynx closes. Causing her to not breathe and the harder she tries the harder is closes. The example she used is if you try drinking a thick shake through a straw the harder you suck the flatter the straw gets. The upside of down is that 99% of children grown out of this all on their own. That's a good thing because we don't have to do surgery or any other interventions in the foreseeable future. If she doesn't get better in the next few months that could change. But the downside is that means there is nothing more that Fred and I can do for her, but is was very nice to hear that our instincts about what we should do where perfect for her. The doctor also told me she does need to be under their observation and if she gets a cold, or flu or anything like that to call them directly. She will have to be seen by them and will most likely have to be put on oral steroids so she doesn't go into serious respiratory distress. Which I was really glad to know because I could image that I would be freaking out if her breathing all of a sudden got 10 times worse and no one would do anything about it because it was just a cold. The other thing is that we will have to continue bottle feeding for quite a while. There was a good chance that the reason she didn't put on weight early on was because she could breathe and nurse because of the angle. Once she started bottle feeding she was able to actually ingest the volume of food she needed she could grow properly.
Armed with a diagnosis, instructions, and validation I scheduled our two month follow up and headed for home. By the way this is a doctor I won't mind going back to see. Apparently he understands that when you have Pediatric in your degree you should have excellent bedside manners
So for right now Rayne is just shy of perfect, but soon she will be. And in the mean time we will keep enjoying every smile, cuddle, and moment with our baby girl.

The Silver Lining

Recently some tough stuff has been happening around here but thankfully there has been large silver linings to almost all of it.

First one is my shoulder. Remember that wonderful injury I had that took a bunch of therapy before we had surgery then a couple months more of surgery. Well something good came out of that injury. I can carry Rayne in the sling comfortably. If I wear the sling on my left shoulder my arm, neck and eventually head really start to hurt. This doesn't happen on my right shoulder. On day I noticed that where the pain starts on the left side is in the bicep tendon where it attaches up by the neck. On my right side that isn't there, hence the lack of pain. So I can carry Rayne on that side for a lot longer before I start to get tired and sore. Who knew that the oddest acquired injury would help me take care of my baby over a year later :)
Second comes from Rayne being sick. This last Monday we had to take Rayne to the ER. The night before she had some very odd breathing and I had her checked by the doctor. They didn't find anything wrong and said if any new symptoms showed up to call back in. Well by 8pm that night Rayne had not kept anything down in 12 hours. She didn't have a fever but she was vomiting everything she ate, and hadn't had a wet diaper since 9am. The ER wasn't fun, but that's another post. But one of the things the doctor recommend was propping her up to sleep. Because of this we bought a bouncy chair for Rayne to sleep in. Which she loves. And now that we are having to travel out west for a while it will be so much easier to take the bouncy chair than our bassinet or constantly figuring out where she's going to sleep.
Third and probably most ironic was Gigi's passing. This is one of the roughest things we've been through simply because of the emotional roller coaster of not knowing when it was going to happen. So we couldn't make plans of when to travel and trying to support people emotionally that are hundreds if not thousands of miles away. But Gigi has released her burden and we are headed out to Utah. The positive side is just as major... well at least to me. Our ceiling is finally going to get fixed. That hole in our kitchen ceiling due to the bathroom leaking has finally been looked at by the repair guy. But because of the risk that there is mold up there he has to come back to do the work once he gets that right chemicals and materials. The repair guy should be back after we are gone so we don't have to deal with, chemicals, dust, hammering, all the thing that go with it. Fred may be back in time for some of it but Rayne and I will probably still be gone. We've been waiting for months for this to be fixed and really worried about where Rayne and I would go while the repairs were being done but now it's not a problem.

So there you go. Some of those major negatives in life can have truly great positives. Some take a year or more to show up and others it can be a matter of hours. So always try to look for the silver lining :)

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