Pulling the NJ

Last Tuesday, Harmonee did her swallow study to see if she was able to swallow with out aspirating. She passed with flying colors! Dr. Book then gave the okay to pull the NJ and replace it with an NG. Meaning; Harmonee is now allowed to eat like a normal baby girl! She took to eating with the bottle pretty fast after her NG was placed. After a few days that is all she would take and we didn't have to give her any formula through her syringe. Yesterday at liver clinic they upped her eating, and so far so good! We were also told that if her labs come back good on Monday she will go down to once a week labs and her broviac will be pulled. This is great news! This also means that tonight is her last night of IV medication for her CMV! 

The P.T comes once a week to work with Harm. She is up to about 6 months developmentally from newborn getting home. She scoots she sits she rolls, next step is standing! Of course her legs are strong enough, just need a little more balance with her tummy.

Brandon left on Wednesday. We had to explain to Layla that daddy is going to work, but wont be coming home for a little while. At first, Layla kept asking, "Daddy go to hospital too?" Brandon kept telling her no, the army was taking him for a little "vacation". After a minute of trying to process this, Layla walked to Harmonee, "Harmonee no hospital, daddy no hospital. Where are you going?" So Brandon explained as much as he could. After a little while of getting use to the idea, Layla told Brandon, "You can't go with Army." It's been hard on Layla, after just getting our family back together someone is leaving again. But this morning she told me, "I miss daddy. But daddy safe, and come home soon." 

Hayden Cullimore

Hayden Cullimore

Hayden is 5 years old. He has Biliary Atresia and Dr. Book is getting him ready to have a liver transplant with in the next few months. He and his wonderful family need our prayers and support. We can make a difference in Hayden's life. The same difference we have all hoped for for our own children with these awful diseases. Hayden has been in and out of PCMC for BA and several other complications that have been created from his sick liver. I have recently met his mother Tessa and sweet Hayden. They are a wonderful family, and insurance isn't helping them the way it should.

The liver transplant and related medical procedures (as everyone already can guess from their own children) will be very expensive. A fund has been established at Wells Fargo Bank. Please send domations to "Hayden Cullimore's Donation account." There is no income tax deduction available for any donation or purchase to this cause or fund.

Haydens Benefits

A 5K run, titled "Help Hayden Heal", will be held July 17 in Pleasant View, Utah. You can mail in your pre-registration forms to: Help Hayden Heal, P.O. Box 13407, Ogden, UT 84412-3407. The runners will pick up their packets and any pre-registration stuff will be done that morning from 7am - 7:45. Then the run will begin at 8am, following the run will also be a silent auction.

The registration donation is $30 per person, however you can register in advance for only $20. A registration form can be downloaded from Hayden's web page - http://www.familyforever.com/Hayden

Benefit Concert and Auction

Monday, July 19, 2010 at 6:00pm
The Layton Amphitheatre, Layton, UT

 

The concert will feature Dallyn Vail Bayles, Mercy River, Paul Cardall & Jessie Clark Funk.

In the auction we have some rare, unique and collectible Utah Jazz Memorabilia including autographed shoes from Kyle Korver and Andrei Kirilenko. There will be many unique and affordable gifts from local boutiques, and local University apparel.

Doors open at 6:00 for the Silent Auction and the show starts at 7:00 PM.

You can guarantee yourself a seat by purchasing your tickets in advance at the following link:

http://www.familyforever.com/hayden

Week 2

Harmonee went to liver clinic today where everything passed off good! Except for her prograf level. Doctor Book is trying to figure out why her level is so unsteady with so many dose changes. On Sunday, a home care nurse spent the day at our house. She took labs in the morning and labs at night. Each one hour before an hour after and and then two hours after her prograf was given. The prograf level an hour before was far to low, at 2.2. Needing to be around 10. The prograf level an hour after was 8 and the one 2 hours after was 5. The doctors are now trying to discover why her body isn't absorbing her prograf. So we will just stay quarentine, which is okay with us.

We went to the emergency room twice last week for Harm pulling out her NJ tube. Such a nosence going into put a tube back in, but a day at PCMC is much more welcome then an hospital stay ever will be. Harmonee is doing great, almost sitting up by herself and loving being a "normal" little girl!

Record Making

Harmonee has been out of the hosptial one week today! Yesterday was her first liver clinic post transplant and EVERYTHING checked out great. Dr. Book seemed pleased with her. This was a record for Harmonee however. This was her FIRST time Dr. Book let her go home from clinic instead of up to the floor, AND the LONGEST she has been out of the hospital between visits since January. We also got to meet Kai's sweet mom. Thoug we didn't get to talk very long with the liver clinic madness, it was still nice to meet her. I was sad to report that Harmonee has yet to start eating. Once we got home and I got miss Harm in bed, she started fussing, and sucking on her binkie more then she has in a while. After a minute I thought that maybe I should try a bottle, just to see what happens, even though all of my other attempts had been sad misses. She chugged two ounces of elecare! I was surprised and excited! She was holding her bottle and just looking like she was in heaven. I snapped a picture and sent it to Brandon instantly! A minute later I got a call from a very excited daddy. Which also gave me the chance to tell him that I was able to start weening her oxygen and she was down to 3/4 of a liter and still stating at 100 and 99.

After nap time I decided to give Harmonee a bit of time on her scarred up tummy. Harmonee was kicking her feet, so Layla had the idea of holding them down for her. Layla started shouting, "Go Marnee go!" as she pushed herself with Layla's help. They both giggled and loved their new little game. After helping Harm across the room, Layla decided to show her how to "army crawl" by demonstrating all across the room. Harmonee tried and tried, and finally, when Layla was about to hold her feet again, Harmonee did her very first army crawl! Layla starting jumping up and down clapping for her sis yelling "Yay you did it Marnee! You did it."

I love having two kids now, and Harmonee is definitely making strides to becoming a normal 9 month old, with some help from a great big sis.

2 months at PCMC

Two months, septic shock, unknown infections, liver failure, lung failure, kidney failure, heart failure, uncontrollable internal bleeding, antibiotics, breathing tubes, pneumonia, no chance of living, and a liver transplant later... HARMONEE IS GOING HOME! Of course she is leaving with the works, oxygen, iv meds for her CMV, and continuous feeds with an NJ, I am still more then happy she has gotten to this point!

I am a little scared though. I am actually willing to give Harm a permanent room here at PC. I am a little scared I will wake up one morning, Harm in another pool of blood and starting all over from two months ago. But I am thinking that is just because I still feel like I have been asleep the past two months and dreamed it all!

I will continue to update Harmonee's progress for all of those who have called me asking if this was it, if this was the end of Harmonee's story and blog. It is only the begining of her story! There is many more updates to come. 

Meeting the Trouble Maker

They let Harmonee have bananas today! FINALLY! At first she didn't know how to eat them. After she got the hang of them I had to pace her! At first she started to dry heave, so we had to take a few breaks!

We finally got to see Harmonee's Liver today! The liver that has given her so much trouble the past few months, before deciding to send it on to bigger, and better purposes, and inheriting her new guardian angels liver.

Healthy Liver

 BA Liver

 That is the bowel from her Kasai

T

The white is the scar tissue and the Green is backed up Bile

The "tree" inside of her liver

E

Extra growth tissue from where her liver tried to make more tissue to help itself drain the bile.

This is the chunk of liver that was taken for studying

It was interesting to see her old liver. It finished the puzzle of her illness, by connecting the dots to show the cause of it all. I can now understand WHY she was so sick.

Happy Fathers Day

Happy Fathers Day! 

To all the fathers that would do anything for their Families!

 Harmonee was more then happy to see her daddy today! And he was more then happy to see her! They had a fun day together. I sat back and let them have a little... "daddy-daughter-play-date". They were having so much fun I didn't want to interrupt anyway. Brandon went through each of her bows trying them on her and telling her how pretty she looked!

I think this is Brandon's most favorite bow on her. It's Harmonee's too. She has always been more impressed with purple!

  But blue looks good on you to Harm!

 She had so much fun with her daddy! He wore her out pretty fast though, so she laid down, and they continued their little date.

 Brandon got some really great smiles out of her today!

He was even beaming at the fact that he thinks he can see dimples in this picture and the starting of GREEN eyes! "Just like your daddy!" He would tell her, then all day he marveled in the fact that Harm is his little twin!

And the pictures continued as he kept bragging that she looked like him! Until he started to feel a little bummed that once upon a time Layla looked like him, and now looks like mom! Unfortunately that got him a little more sad as he realized once again he was going to miss the rest of her first year and her whole second year. He says when he gets home, Harm will look like me and he won't have a little twin anymore. He breaks my heart.

You can be twins for now though!

***

The goal was to be going home tomorrow. The attending physician told us today she doesn't think she will be going home since her prograf level is far from steady. Friday her level was 16, Saturday, 8, and today it was a perfect 10 (where is should stay). 

Her feeds are being upped 6 cc a day. Once she gets to 45 cc they will stop TPN! Making it MUCH easier for us at home! Now just to get her eating by herself and off the NJ feeds. Of course, she will have to be able to eat before this happens. So far they haven't let me feed her, until her breathing is a steady 40 or under (which it hasn't been). Its a little frustrating waiting for her breathing to even out when there has been no change. I feel like a month ago when we were waiting for her to get out of the PICU feeling like it would NEVER come. I know it will, I just don't want to wait anymore. I want to take my baby home, and feed her! At least she is happy though. We get to play most of the day and she can sit up by herself for a few seconds before loosing her balance and falling over! She is getting so animated! She is turning into my "normal" 8 and a half month old baby!

Harmonee's Gone Public

About a week ago another liver mom (Liz) told one of the journalists about Harmonee. She has come and met Harm and so has a photographer, she is doing a story on organ donation and Harmonee is part of it! Since then a cousin told Ch. 13 news about her, therefore, Ch. 13 has been following Harm the past few days and will follow her a little ways before airing her story. Along with Ch. 4, 2, and 5. I hope that Harm's story affects everyone in the same way it has affected out family. Before all of this the thought of organ donation had occurred to us, but hadn't really stuck. Now.. Organ donation is all we can think about when "Life and Death" come up.

Harm is one month post transplant! Can you believe it! I can't. It still seem surreal like a dream I am waiting to wake up from, and to go about my "normal-for-the-past-six-months" routine or waking up, laying in bed letting it all soak in. Maybe cry a little bit. Call Brandon for a pep talk, take a shower to remind my self of reality and to brave myself up for the day or BA. Now reality is so much sweeter then it has been in the past almost 9 months of Harmonee's life. 

We are also at our time to send Harm's guardian angels parents their letter of gratitude. We are still smoothing the rough edges trying to decide if what we have said has expressed enough thankfulness. Of course the obvious answer is no. But for a letter, I hope it explains as much as it can. Another day, week, month, and soon to be years with Harm, for the loss of their beautiful child... I am eternally grateful, and in their debt.

CMV+

 

 Day of Diagnosis

(again don't mind the date, this camera didn't work AT ALL, the dates wouldn't stick before the actual camera quit!!)

After days of high heart rates, vomiting, high blood pressure, rashes, high breathing frequency, far from amazing O2 stats, and many many labs later... The doctors finally figured out what is going on with miss Harm. Harmonee's labs came back CMV positive.CMV or Cytomegalovirus, infects most people sometime in their life. Most people it causes cold like symptoms, and nothing ever really comes from it. In a compromised person it causes flu like symptoms, it could cause infections in the eyes and make it easier for organ rejection. Fortunately, Dr. B being the dedicated liver genius she is thought of the possibility of her contracting CMV as soon as Harm's donor liver came back positive for CMV, and Harm was not, antibiotics were started immediately after transplant to prevent CMV doing more damage then the slight cold symptoms of a normal person. Because Dr. B took these precautions Harm's liver labs are still normal "picture perfect" as they say, and Harmonee is getting better already after being put on the actual antibiotic used to fight CMV.

Since the doctors found out the cause of the problems, Harm's feedings are being turned up twice a day again, and the doctors are still shooting for the end of the week to first of next week. TPN will be off soon after and soon she will be able to eat by mouth instead of by NJ.

I climbed in with Harm today while she was taking a nap, so I could get some extra cuddles in before going home. It has been a while since I have slept in a crib, since I was a baby, obviously. I am a little jealous, her crib is a lot more comfortable then the cot. I am half tempted to climb in and sleep with her at nights instead of on the pull out chair we hospital parents call a bed for so long!

Spit of Steal

Learned how to give baby kisses today!

Harmonee goal of being home today has come and gone, and a few days were added to her stay. After being on an oscillator Harmonee's lungs are having a little struggle right now staying clear. The mucus that had been stuck in her lungs is finally making it appearance, (this being because the ocillator pushes the mucus to the sides of the lung because it breaths so fast it doesn't exactly clear them) the mucus being so thick they can't really get a lot from sucking her out with long tubes that go down the throat or nose. This being the case Harmonee has to cough most of it up on her own. Respiratory Therapist come in twice a day to pound on her chest and back with a rubber hammer like thing. Not to worry, Harm thinks this is pretty humorous and gets a kick out of it every time, it also puts her to sleep pretty fast!

Today was one of the better days though, Harmonee is catching on to stuff fairly quickly. The PT came into play with her on a mat, she showed her how to turn a key and push a few buttons. Harm's favorite was the key she kept turning it and things would pop up. She also sat up in a PT chair for about 2 hours before getting exhausted and falling asleep. Some of the nurses from the PICU have come up to see how well she is doing, one of them commented that "she used all of her 9 cat lives" and is on a spare. This I found quite funny and very appropriate for Harm.
Mommy and Me

 Mommy and her kisses...


Respiratory Therapy

I never knew a good beating was so much fun... or helpful
 Physical Therapy

I'm Always so proud of myself after!
The Aftermath

Nice DEEP sleep

No Time For Colds

Looks like Harmonee woke up with a cold this morning. She has had high fevers, a high heart rate, fast breathing and throw ups all day. The doctors thought it could be with drawl from medication they had just taken her off of, so blood cultures were taken, mainly to rule out rejection. A few check ins later, it turns out Harmonee has a slight cold, that for someone compromised acts like a big cold. In order to help get rid of it, Harmonee has slept literally all day long. With a brief half hour, mommy daughter work out. She is getting so good at sitting up! Not to much longer and she'll be sitting up all by herself! She is still looking great all in all!

NG/NJ Blues and Cold Feet

Harmonee is eating a whole 12 cc an hour! Almost  half an ounce and this being 5 cc more then what she was eating before entering the PICU in April. Unfortunately this is all through her NJ tube, and not by mouth. With the GI team shooting for Tuesday to let her go home, its looking more and more like she will be going home on continues feeds by NG, with nothing by mouth. But no one knows the plans of the doctors, nor can anyone guess. This isn't such a bad thing, at least she will be getting food somehow, and it is MUCH easier to give so many meds through her NG tube. I was looking forward to feeding her some Gerber Bananas, and I suppose I still can look forward to that at least coming soon. I have to keep reminding myself it could be worse. A month ago I would have given anything to have 1cc of formula dripping through her NJ. I'm getting a little greedy. Baby steps are good things.

My "little Partier", as the nurses have started to call her, has been up all day and most of last night, just barely thinking about sleep she is testing out her voice box trying to fight the sandman. This is making me a little nervous to go home. I am ready to sleep at night with her, not stay up for 40 hours at a time like we so often did before transplant. Brandon keeps telling me we will have to take her hospital crib home, and record the sounds of the pumps and machines for her to sleep to instead of lullaby's at night. Going home is going to be an adventure I didn't expect.