Thumb Sucker

Hadley has found her thumb, which we currently think is very cute. When she's 10 however, and still sucking away, that's another story.

In other good news, we removed Hadley's feeding tube this morning. She's been doing really well eating on her own and we were mostly using it to supplement her diet. The doctor will let us know tomorrow if we need to put another one in.

Just Another Run of the Mill Friday Night

There I was on Friday night, checking out at Walgreens with the above items. I was so sure that the cashier was thinking "Whoa, she's about to have an exciting week-end". She didn't even blink an eye.

Along with the rest of her body, Hadley's bowels have not caught up to her muscle strength (ie. she's not pooping). And one very valuable lesson that I have learned from my father, "Your ouput NEEDS to equal your input!" At the hospital, the nurses took care of the daily suppositories. I was hoping that this would be DGs job when we got home, but I drew the small pinky finger, so got stuck with the task. Just another part of parenting they don't mention in the baby manuals.

We are home

The plan was to discharge us today. However, after rounds yesterday, we asked (ie. pleaded, begged, offered to clean bedpans) if we could go. We nodded confidently that we were quite able to do the NG tube feedings and they agreed to release us with a promise of a doctor's visit the next day. The moral of this story is, you never know unless you ask!

Here is a demonstration of what it takes to feed her through a tube. First we attempt to feed her via breast/bottle. If she eats less than 3 oz. then whatever is left goes into the tube. First, using a syringe, we pump 5ml of air into the tube and using a stethoscope, listen to her stomach to hear the phht of air. And um yeah, phht is the correct technical verbage. If we hear the phht, then the tube is positioned properly in the stomach and not in her lungs. Then we fill the syringe with breast milk and let gravity take effect. We will do this every 3 hours until she is strong enough to eat on her own again, which we hope will be early next week. We've also learned how to remove the tube, though if it comes out, I'm not so sure that I would want to try and put it back.

DG and I slept in the same bed for the first time in 2 weeks. Life is good.

Not the Vacation I Had in Mind

The average length of stay in the hospital for a baby with botulism that got the drug Baby Big is 2.2 weeks. Day 11 and we are officially ready to go home. Hadley's personality has come back, giggles and all, and she is showing some new traits. For example, whenever there are doctors and nurses in the room she is so patient that doesn't let out a peep (like her mother) and instead she flirts and smiles like an attention starved shut-in. (like her father.) I think if she talked, she would know all of their names and life stories, and they would know all about the bees, her frog, and the wieners.

We were moved out of the PICU last Friday, yay! Though we are no longer constantly monitored, this means that we now have our own bathroom and shower and we don't have to share one bathroom with 26 other patients. We also are allowed to have food in our room. However, we now do not have the luxury of taking a walk when she is asleep.

Right now, we are working with occupational therapy to get her strong enough to suck and swallow. We've been practicing several times a day, putting her to my breast, and today we worked with a bottle filled with 1/2 ounce of milk. Once she is able to eat on her own for 24 hours, we will be able to go home. They were supposed to pull up the feeding tube from her small intestine into her stomach this morning to do bolus feedings. However after 2 xrays, they had not pulled out enough. So they are going to try again tomorrow. Currently, she is on a steady flow of food at an ounce an hour. When they pull the feeding tube back, they will go to 3 ounces every 3 hours. This will help to give her that full feeling and take longer naps. (We hope.)

Counting down the days until we bust out of this joint.

Reunited and it Feels So Good

When I held Hadley last night for the first time in 6 days, not only was it a relief for me, but for her, it was like she was home. It reminds me of the lyrics to my favorite Breeders song "I am the Sun, I am the New Year, I am the Way Home, I am the Way Home." Relief washed over her, she no longer needed anti-anxiety medicine and she sighed and fell asleep.

We are doing so well, back to our old jovial selves and other than a little sleep deprivation, eating excessive amounts of donuts, muffins, and ice cream from the cafeteria. Comfort through food.

Since we've been here, the support of our friends has been amazing. My first night here, Lora stayed on the phone with me late, helping me to calm down and fall asleep. She then came here every day to visit, rub our backs and bring us food. The minute I called Holly and told her what happened she left work and came to the hospital. Jinnie spent an entire day here allowing us to take breaks and eat and she keeps bringing us meals all the time. Cynthia and Jeff have been baby sitting the wieners, who are no doubt delighted to get extra cheerios fed to them by 2 year old Elliot. Last night, our friend Jay brought us Greek Town, YUM! And then today, I had two special colorful cards delivered to the room for Hadley. My friend Tara, all the way in NJ found email greetings here on the Children's Hospital site. Thanks Tara, that was so cute. We then got another one from my Aunt Betty. What a fun treat to brighten our day. Again, I can't thank you all enough for the well wishes.

Talking to the Bees

Hadley was extubated last night and I can't tell you how excited we are. It was so fast the way they whipped that tube right out of her. We anxiously awaited her cry which finally came as a mousy squeek. I had not held her since Friday so I danced around the bed waiting. When they finally put her in my arms, it was like being reunited with your true love. She is still on the feeding tube and they have oxygen in her nose as well, but she is doing so well. Every day we see her move more. Just yesterday she tried to turn her head. We're hoping to be out of the ICU soon.

Here is a video that I took on April 4 of this year. I posted it to YouTube and originally just sent it to the grandparents, because I thought it would only be of interest to them. However, DG and I are finding it to be great medicine for us to remember how she was just last week.



DG also posted a picture of Hadley in the hospital flickr. Click here to see it.

Children's Hospital in Denver

Hadley is regaining strength little by little every day. She is doing such a good job breathing on her own, but they are looking at two things before extubating her. 1) Her negative pressure, or the air she breathes out is not quite up to the level they want yet and 2) She's drooling so much that they are afraid she is not strong enough to swallow yet, and upon removal of the tube they don't want her drool to go into her lungs. They let her breathe on her own for an hour today and even though she did very well, she seemed a little fatigued by it, so they will probably wait another day and try it again tomorrow. The minute that tube comes out, I told her to watch out because I am coming in like a hurricane to scoop her up. I haven't been able to hold her since last Friday. *sniff* When I was washing my pumping supplies in the sink the other day, I found myself rocking back and forth in her favorite comfort move.

Here is a good analogy of what she is going though:Botulism is what gets injected into Botox patients because it kills the nerve endings and doesn't allow the muscles to move. Ultimately this is what has happened to Hadley. The toxin in her system started killing her nerve endings turning her into a rag doll. The medicine has started to kill the toxin, but once the nerve endings are dead, they need time to regenerate and depending on where they were in their life cycle is how long the recovery is. She gains back more movement every day. Just tonight with her Nana here, she started smiling and laughing.

We could not possible be in a better hospital. Not only is this brand new facility beautiful, but the staff is amazing. When we first checked in, I joked about how gorgeous everyone was. I felt like I was on the set of a tv show. First a hot male nurse brought us into the ER, hubba hubba. Then an even prettier woman came to give Hadley her IV. Even the resident who kept coming in to ask us questions over the 6 hours we were there was a Hottie McHoterson. And they are not just beautiful, they have great nurturing personalities. Yesterday morning, the ER nurse saw me in the cafeteria and came over to ask how Hadley was doing. She relayed that they were all so stumped by her condition, but they had heard she had botulism and they all started reading up on it, and studying the information so next time they would be better informed. Then yesterday afternoon, the young resident from the Short Term stay ward where we started came down to see how she was doing too. They get cases on that floor like asthma, severe colds and rashes, not usually something so serious. After listening to him talk about how he keeps reliving that day, I realized that it was a bit of a whirlwind for them as well. Last Friday night, Hadley's pediatrician stopped in for the ENG test and stayed for over 2 hours with us until we found out the results. And just today, the pediatric nurse from the pediatricians office who recommended that I come to the ER, came to visit with a present for Hadley. She had been so worried about us that she called the hospital every couple of hours the first 2 days we were here.

I've also received visits from the nutrition, lactation, and child development specialists, all with great information on what we can do for Hadley. Child development brought in lullaby's to play for her and a mobile to put on her crib. This woman was so giddy over this mobile because in the 10 years she has worked in PICU, they couldn't find a mobile without all of the plush animals on it that could not be washed. This is plastic and they made colorful laminated cards to hang from it.

So we are well on our way to recovery. Thank you so much for all of the emails of support. It's like a big giant hug from everyone we know, making us feel so loved. My dad told me that he would start feeling better when I feel better, and I feel great. So rest assured that we WILL make it through this.

Infant Botulism Recovery

Everyone has been so kind and wonderful with their emails. Thanks to everyone for their well wishes. I will continue to try and update the blog as I am finding it a bit cathartic to get my thoughts written. I wait until she is asleep at the end of the day to start.

Hadley woke up at 8am with big eyes ready to take on the day. By then they had increased the amount of breast milk being fed to her to 1 ounce an hour. This is a lot for a girl that normally only eats 18-20 oz. a day. But they need to make up for the days that she was unable to eat. Thursday and Friday I had been attempting to feed her using a dropper, like a little bird. By Friday morning however, after an ounce, she started choking on it, so they had to suction out her mouth and nose. There were afraid that her inability to swallow would push the liquid into her lungs causing other problems, so we were not allowed to feed her any more. They told me she would have to feed off the fat of the land, which when you look at her little chubby legs, looks good. However at her 4 month visit, she was only 12lb 3 oz, and in the 25% for weight. She probably lost 1/2 lb or so over this time, so she needs the extra calories.

Also this morning, the respiration nurses told us that she was barely using the breathing tube, so they were going to start lowering the oxygen levels and talk about extubation. Initially, she needed the breathing tube because her muscles were so tired that she couldn't breathe, not at all because of her lungs. She is still so weak however, that they are going to keep the tube in until she gains some strength back and we are sure she can breathe on her own. This could potentially happen tomorrow. :fingers crossed: I can't wait because it means that I can hold her again...and never let her go, until she is 18.

She was alert for so many hours today and such a brave little girl. She barely fusses with the tube down her throat and hasn't had any narcotics since yesterday morning. She's just on tylenol now. We've noticed amazing improvement throughout the day. She tries to moved her hands, even though they are strapped down. The neurologist said that her tone was better too which means that her muscle reactions are looking good. The attending doctor of the PICU told us that recovery with this drug often takes 2 1/2 weeks, so we will be here for awhile. I told Hadley that if she would get better in a week that I would buy her a pony.

Things are looking up and since I have not slept more than 2 hours at a time since this happened, I am going to sleep in a private room tonight with a shower. David will stay in the room with her. Hopefully I'll get rested so that I can remain strong for the bravest little girl that I know. Her good temper puts the rest of us to shame.

YAY Botulism!!!

Hadley did really well last night and remained in stable condition. This morning, they put a feeding tube through her nose to her small intestine and started giving her 1/4 ounce of my pumped breast milk every hour. At 10am this morning, when the infectious disease doctors came to visit they told us that her stool sample lab results, which they had not expected to get for 2 weeks were back. The results were positive for Toxin A, which meant that she has botulism. At this point, with 2 tests pointing to it, we rejoiced. YAY botulism! At least now we could work on curing her. The medicine, or white diamonds as we referred to it, got to us today and was injected around 1pm.

Having been sedated for most of the night, she slept a lot today only opening her eyes a few times to say hello. Mostly she cried, or should I say her lips made the shape of a cry, and tears came out, but there was no sound because of the tube in her throat. Because I can't hold her, there was a lot of hand holding, whispering in her ear and singing.

Even though I am sure that a lot of you have googled this disease, here are a few things the doctor's are saying. 100% of children who get botulism recover. There are less than 100 cases of infant botulism in this country every YEAR!!! (I'm thinking we need to go play the lottery as well.) Infant botulism is an airborn spore that usually comes from being exposed to new construction, or someplace where a lot of dirt is being rustled up. It can also come if a child were to ingest honey. However, since the 70's there are only 2 documented cases to base this on. Hadley has not received anything but breast milk supplemented recently with some formula and there is no construction around us. In the majority of the cases, patients never figure out how they got it. So we need to stop focusing on it, stop wracking our brains, looking for the cause and look to the future of her getting better. Ultimately, the medicine is supposed to kill the remaining toxin, allowing the rest of her nerve endings to begin regenerating. In most cases of botulism, without medicine, recovery can take up to 52 days. This serum is supposed to cut that time in half. The effects however are not immediate and there is no telling how long it will take. We are also in that top 4 best Pediatric Hospitals in the country. We have one nurse who sits outside the room and monitors us all night long. It is very reassuring.

Just now tonight, we had an hour of open eyed alertness. It was the best I have seen her in over 48 hours. I think she may even have tried to smile a few times. She has been such a trooper through this whole experience. Other than her general discomfort, she seemed to enjoy the attention she was getting from everyone and never let out a peep when different doctors came to examine her every few hours. She has been such a good girl.

Thanks so much for keeping us all in your thoughts, it has been very comforting.

Botulism

On Tuesday, after receiving her 4 month immunizations, Hadley started to become very fussy and refused to eat. The situation worsened Wednesday when she was even refusing the breast and her ability to swallow seemed impaired. She had also started a low and constant moan. Thursday morning, I took her into the Pediatrician thinking it was just a side effect of the shots. They noticed lethargy and her head was flopping around, so they sent me to the ER of the brand new Children's Hospital which just opened last September. We were checked into the ER Thursday morning by 10:30am. After hooking her up to an IV, they sent us to an observation room by 5:00 pm. After hours of watching us, all of the interns, residents and attendings were stumped, so they decided to admit us. After less then 3 hours of sleep, and excessive amounts of crying we woke up this morning and Hadley was even worse. She hadn't eaten in days, she couldn't raise her head and she was pretty much a rag doll. Everyone had no clue what was going on, so they started doing tests to rule out the possibilites. This morning she had a catheter put in to test her urine for a UTI. Negative. Then she had a CT scan which showed her brain was normal. This was followed by a spinal tap which again showed the fluid to be normal. She was poked with needles, prodded by all 30 doctors that came to see her. She slept through her enema. Then they started to entertain the idea of botulism. This is a rare air born illness which attacks the nerves (like Botox). The head Attending physicians of Neurology, Center for Disease Control, and NICU all came to visit us asking the same questions over and over. No one had answers. Finally, they had one final muscle test to give her. After an hour of moaning, they puzzle pieced their info together and it appeared that she did indeed have Botulism. I won't go into the nitty gritty, but ultimately, this one test that they were not sure would work, ended her pain of further tests. Relief for us. There is one company in the country that makes the medicine for this disease and they are over nighting it to the hospital. Let's just say that one dose is half the price of my first condo.

Right after this assessment, ICU came up for an evaluation and decided it was best to move her to monitor her more closely for the night. So here I am, sitting here, watching my baby girl, hooked up to machines, intubated, and a shell of the smiley playful girl she was just a few days ago.

The past 37 hours have been some of the worst in my life. I am living in a panic attack, unable to pull it together and realize that this is my life. The good news is that botulism is curable with no long lasting side effects. We could potentially be looking at a few week stay in the hospital. At this point, nothing in this world matters to me except this little girl. She is what I live for and I am humbled as I am nothing compared to her.

As such I am not sure when I will post again. Please keep us in your thoughts.

Cousins

We all went up to see Jinnie, Marc and Bloom this week-end for lunch. Bloom got to hold her cousin Hadley. You may remember the video of Bloom counting for her in utero. So cute. They are three years four months apart. It's still crazy for me to think that I am an Aunt, and Hadley has a cousin. It is wonderful to have family so close.

Baby Products

Because I, like most youth obsessed women, am a sucker for beauty products, years ago I bought Paula Begoun's "Don't Go to the Cosmetics Counter Without Me." I talked about it first here. For years, I used this make-up Bible to clean out old products and purchase new non-irritating make-up. Well, Paula just came out with the 7th edition of the book and even though we do not have it yet, you can view some youtube clips of her book tour here. Knowledge is power.

We also use her face products because they are basic and inexpensive. We even just started using her shampoo, which is great, and in our last order DG got me some of her constant color lip paint which I love so much that I just bought a bunch more colors because it is on clearance for $5!

Now I am going through and looking at the baby products that she reviews. I am just so annoyed with stupid companies making crap products for us to put on a baby's skin. Why do they call it "sensitive skin formula" when they've put a bunch of ingredients in it that cause irritation? It's more annoying than poison oak on a hot summer day. You can read the baby product reviews here. The main one that I see we use is Butt Paste. We got it mostly for the great name, but have been using it occasionally if Hadley gets a little red. We've been lucky that she hasn't gotten full blown diaper rash. **knock on the diaper changer** But now we have to toss it.

Take this Poll

I have not dyed my hair since approximately June 2006 (left), right before DG and I got married. The reason being that I didn't want anything to hurt our chances of getting pregnant or staying pregnant, regardless of the arguments pro or against hair dye.

That being said, what you see is what you get these days. And try as they might, when my parents were in town, they could not find ONE gray hair on my head. HA.

Now that spring has sprung, and I am coming out of my cocoon, I am looking back at pictures of me with lighter blond highlights and thinking about refreshing my look for the summer. See how old and tired I look with dark hair (right). Tell me what you think by taking the poll below.

 Should I dye my hair again?

• 
  
  Yes, it will make you look younger.


• 
  
  No, and stop being so vain.


• 
  
  I don't care, now go post some more baby pics.


• 
  
  If you want, but you are pretty just as you are.


• 
  
  Sorry, I stopped in looking for girls who pee themselves.

view results
Free vote poll

Parenting Dogs and Babies

I so badly wanted to name this post "Girls Who Pee their Pants", but felt it perhaps violated the integrity of these baby pics. I don't care if I go down in flames, but I didn't want to drag Hadley under the bus with me. She's got a reputation to uphold after all.

DG caught some pics of us playing this week-end. We sang the ABCs.


We practiced saying MA MA MAMAMAMAMAMA.


We had eskimo kisses.


Then I threatened to throw her down on a plate and eat her up because she's so gosh darn cute I can't take it.


As I was posting, I was reminded of a picture of Tica and me from 2006. Apparently I was practicing for parenthood.


Yes Gibson, I love you too.

How Did you Find Me?

Once a month, I go through my Google Analytics to see how many hits I've been averaging. For the most part it remains pretty consistent. On occasion, I like to look for trends. How did someone in Estonia find my sight and why are they coming back for more?

Analytics actually helped us once when the buyer for our last house mysteriously backed out of the sale 4 days before closing. His realtor, his mortgage person and he lied by saying he had funding problems, but we knew better as he had already been pre-approved. Because he had a good excuse to back out, we were required to give him back his deposit. Needless to say, at 3 months pregnant, it was a stressful time as we were left to scramble around and come up with some creative financing to be able to close on our current house. I didn't know until 30 minutes prior to closing that we were approved. We also had to carry two mortgages for several months. *ouch* That being said, we Googled the buyer, found out where he worked, and were able to track the day that he hit both of our blogs. He ended up reading something he didn't like about the neighborhood (the power of the internet) and tried to unethically get out of the contract. We were able to confront his realtor with the facts and they ended up admitting to their lie and we got to keep his money, which didn't even begin to cover our losses. I think my exact vengeful words were "Google works two ways Mofo!" (See what a family friendly site we are now?)

That was a long tangent to get to what I really want to talk about, which are search strings that people enter to find this site.

Top search strings:

1) The most popular string is: "Love of Mine, Someday You will Die" which goes back to a post I did about one of my favorite Death Cab for Cutie Songs. Who knew that so many people would find this site from one line of lyrics?

2) All things bee: beehive, beehive cake, beehive hairdos, bee keeping: These people must be surely unhappy when they come and find out that there is really nothing to do with what they are looking for.

3) Pabst Blue Ribbon baby onsie, Pabst Onesie, etc.: Ooops, maybe I should not have called the PBR booties so tacky. There are actually quite a few people out there who are looking for them.

4) Ultrasound big head, big headed baby, baby ultrasound overbite: Poor Hadley got such a bad rap.

5) Boobies full of milk, milky jugs, engorged jugs: Ahhh the joys of nursing. Not exactly the fetish filled site they were looking for, I suspect.

6) Christy wears diapers, Christy Pee pics, Girls who enjoy pooping their panties in public, I was incontinent in my knickers today blog, fat girls pooping and pissing, and cheerleader crotch shots: Gawd knows what I wrote about to end up in these search strings, but I actually feel bad for the guys that are lonely on a Friday night, who have gone out and picked up some mountain dew and porn at the 7 eleven, and are getting settled in at the computer, ready for hot girly action, and instead they find excessive baby pics and diaper talk. Nothing like a cold shower.