Healing with the help of a Guardian Angel

Harmonee is getting back to her old self! She is smiling and chewing on her binky! The doctors said that Harmonee was has been staying up late and playing, then waking up early smiling and giggling, talking and playing. This to us means that Harmonee is starting to show a little of herself before the PICU came along.

The doctors have been debating on putting her breathing tube back in since her tummy is so big, she was having a very hard time breathing. This all has subsided, and breathing numbers have been altered. Although her lungs still aren't healthy enough for the numbers to stay down... They are making progress, and the talk of a breathing tube has stopped. 

 

I have not been able to go and stay with Harmonee since I have been sick and not allowed in to see her. I wish I could see her smile and her baby teeth getting more noticable. Daddy had the weekend shift, he loved it! It has been the first real amount of time he has been able to spend with her since she went into the PICU.  He is starting to become heart broken since he received the news that he may be deploying this July after all. He feels that he has missed so much of her first year, and may be missing her second year as well. I couldn't even imagine. I love seeing him with his girls, he is such a good daddy.

Battle of the Bands Benefit!

Harmonee's benefit dinner turned out pretty well! Big crowds at the first and end and brought in a lot of very helpful money!! Looks like Harmonee's ICU stay wont be as stressed for money as I though! Major relief! Thank you everyone who was able to make it! It was great seeing you all and finding out how many people Harmonee has touched! Thank you all again!

Harmonee is doing good today! The doctors are still hoping not to put her breathing tube back in. If she can hold off until Tuesday, she will have a better chance at weening off of it after surgery. Her blood pressure is still a little high, so the doctors have given her medicine to bring it down, reversing the affects of the meds that are making it high. 

Blood tests are taken every day to measure her blood gases (how well she is breathing and carrying oxygen ((ph levels)) and to measure her liver labs (sees how well her liver is working, if its rejecting or taking, needs med changes etc...etc..) and labs for her vitamins, proteins (checks vitamin levels, sodium, potassium, etc...etc...) along with the normal complete blood count (CBC - which determines weather she needs blood, platelets, has enough white blood cells, or has to many white blood cells which could mean infection). Today blood counts are good, but the doctors are watching her to see if she needs more blood, which will help her breath easier. Her liver labs have been going up and down this past week, meaning rejection. Today, the doctors said that her liver labs have continued to stabilize and become normal, which mean rejection has been reversed! All in all, we are just waiting for her liver to heal. On Tuesday she goes in to close her muscles, the doctors said this will help things to get better, much faster then she has been!

Out with the Old...

In with the New...

In the past month, Harmonee has sent on her old liver, and replaced it with a NEW PINK liver. Thrown out her yellowish eyes for WHITE clear eyes, and the dullish tint to dark BLUE eyes. Traded in her gummy smile for a BABY TOOTHED smile. Cast out her malnourished body for healthy baby chunks (supper cute) and her orange colored skin for an ivory colored skin. Left the IMSU (sadly), to join the team at ICS. Her diuretics for an immunosuppressor, and her BA for... well she just got rid of that.

It has also been one month since she arrived in the PICU, with multiple organ failure, and unknown infections. One month since she has been on and off... on and off... the DNR, and transplant list. One month since she has had a bath or made a noise, or been awake for that matter. One month since she has had breathing tubes, and catheters. One month since I have held my baby!

Today... I was able to hold my baby!!! The breathing tube was taken out and Harmonee has a new little baby tooth to show for it! Sadly... we were also given more news today, more then just her breathing tube and catheter being taken out. Harmonee's liver biopsy came back to show acute rejection. The doctors said that they have caught it soon enough to up her prograf and start antibiotics that will hopefully reverse the rejection! I am beginning to think that the joke about Harmonee making sure these doctors know their stuff... is actually what she is doing!  

 Pulling out the breathing tube....

Getting her to breath...

 They checked her out....

 Deep breaths...

The deed is DONE!!

And... I FINALLY got to hold my baby!!

More antibiotics...

Harmonee's heart rate is finally back normal, down from 210, and her blood pressure is finally in a good range from yesterday after surgery. Dr. Book as well as the nurse said she look good to her. Her liver labs unfortunately have gone up since yesterday. They are going to check her liver biopsy from surgery for any signs of rejecting. Luckily they can give her different meds and antibiotics to prevent the liver from rejection. The doctors said that it is very rare for a transplantee not to reject their organ at one time or another. So no worries.

She is also going to be started on some different antibiotics as well today, reason being... her new liver was CMV positive, and Harm was CMV negative. (CMV: Cytomegalovirus- a common virus that infects most people at some time during their lives but rarely causes obvious illness.CMV can cause chickenpox,(transplatee's are not vaccinated for chickenpox at any time in their lives, it is much worse for them then a normal person)) The antibiotics will only be for a little while until her liver has completely settled. Her breathing tube is being weened, with maybe some spontaneous breathing trials tonight or tomorrow, and maybe taking it out this weekend. After her breathing tube is out, the doctors will evaluate her and maybe move her to the ICS floor. Dr. B asked if I thought things would go this good, I told her I had no idea what to expect with the past few weeks, Dr. B just smiled and said that she knew Harmonee would be doing this great!

Surgery #3

Before and After

Doctor Van Der Werf only closed Harmonee's skin today so he could remove the wound vac (explains in earlier blog) the muscle and fascia tissue are still open... these will be closed next week.

Before

 

After

Going to Surgery Early

 Not sure why she kept itching her ear, but it was her obsession all day!


Harm's fevers were due to infected tummy fluid, and a yeast infection. The doctors decided to take her into surgery today instead of Thursday. They are going to wash out her tummy to get rid of the infection, and try closing the muscle and skin. 

Harmonee has been watching T.V all morning, her gaze fixed to it until a green scrubbed surgeon comes to see her. Surgeons have been in and out all morning, Harmonee seems to know who they are very well by now. When one of the surgeons walks into the room, Harm's blood pressure raises and she cries her silent tears!

Last night was a long sleepless night. I thought a lot about when Harmonee was diagnosed. I realized that exactly 5 months from Dec. 18, Harm got her transplant. It seems like a lot longer then 5 months. So much has happened, we have learned, became stronger people and as a family, Harm was given another chance to live, life was given another meaning, and when I thought things would NEVER end, it ended. But the beginning of another story has begun for her, and our family. The beginning of more updates to her blog, updates of recovery, and striving to keep this new liver, and this new Harmonee what they were meant to be.

...Makein' some Lemonade

I came in this morning excited to see an awake, alert, and ready to play Harmonee, only to find nurses around her bed. Instead of the usual duck suit, it was purple gloves and blue gowns, taking samples from every where on her body that would give them fluid. Her nurse for the day explained Harm had woken up with a temp of 38.3 c. (100.9ish). I am quickly learning this is very bad news for a transplantee/prograf user. [[Prograf - immunosuppressive drug]] On the upper hand, they are weening Harm off the ventilator. Her kidneys are also supporting her fluid well enough that dialysis was dropped! One machine down... one to go!

This weekend when I was home, I showed Layla pictures of Harm smiling. Layla stared at the pictures having us go back and forth and stopping on a little video I took of Harmonee looking around and staring at everything with big eyes! Layla pointed at the camera and asked, "that is Marnee?" I told her it was, Harmonee had just gotten her new liver and the tubes were helping her feel better. Layla thought about this and said, "Marnee still sick," leaned forward, gave the camera a kiss and went to cry on daddy's shoulder.

Let's Play!

Harmonee is wide awake and ready to play! 

Her eyes are so much darker, whiter, and sparkle more then they ever have before! Her hair is even getting longer and darker! 

The doctors say that this weekend they will take her breathing tube out, and take her off dialysis!

Recovery

Harmonee is bringing fight to a whole new level. Now that she could easily just sit back, relax and let her liver do the work, she is still fight sedation. The nurse gave her extra through the night, but Harm was still wide awake staring at her for most of it. This morning she is batting away everyone's hands, opening her eyes, and wiggling. I have to admit it is good to see.

I came in this morning to see that she is helping the machine breath for her. The renal doctors said that they are going to pull off a little more fluid from the OR, once they have pulled off enough she will be taken off dialysis since she is making urine. Today they might check for a blood disease that is carried in my family called ITP, where the platelets are very low. We will see how everything turns out. Her new liver is doing very well, and adjusting as they had hoped. Next Thursday is they day planned to take her back to the OR and close her up.

I have been feeling a little guilty, having a blog all about Harmonee. I know I shouldn't, but I feel like I am leaving Layla out. I leave her home, for weeks at a time with out being able to see her, the main subject at home is Harm, weather she is home or not, and Layla has been very good about the whole thing. So... to satisfy my need to make things feel a little more even with the girls, I made a family blog. 

http://phillipsfamilystory.blogspot.com/ (click on the pic that says Harmonee's family blog)

*Thank you all for your love, support, and prayers, I hope to meet most of you at the battle of the bands benefit concert for Harm!

Battle of the Bands Benefit!

Please come and support Harm! Spread the word!

Not Just ANY Baby...

Its official, Harm set the record of most blood given in pediatric transplant here at Primary Children's and our region!

Dr. Book quoted 5.19.2010 - "No other baby would have made it through this type of transplant!"

I say - "Harm isn't just any other baby! Has she not proven EVERYONE wrong yet?"

Newest Update

Dr. Scaife (Harm's Surgeon) came out to give us the update, Harmonee is doing great! He said that usually when their is a big "hick-up" during transplant it takes them a while to recover from it. He shouldn't be surprised Harm is doing so good. Have we not learned by now she isn't one to try to guess, predict her outcome to, or to give up? I wasn't lying when I said she was a little to stubborn to give up. Anyways... Harm's bile duct is now connected. They said her new liver is doing so good that they went ahead and "finished" transplant. She still has a few more surgery's since she isn't completely closed up on the outside. Her tummy is still open with a wound-vac in it. Monday they will clean her up and maybe close her depending on how well the liver's trauma is subsiding.

We have gotten a few details about our donor. It was little 7 month baby girl. We haven't heard yet from what state, but New York has been said a few times, nor has the cause of death or much else really. We do also know that this liver was outside of our region, it was from the National list. Dr. Book and Dr. Scaife, said she was the sickest baby in the country. So sick that she went up to the top of the national and regional list. Mainly why we got a liver from across the country, Harmonee bypassed all other regional list members. NOW she is doing amazing! I hope that someday I will be able to meet the donor and let them be part of Harm's life.

A Day in a LIFE

 Pre-Op, Post Transplant

Walked into see a little Harmonee WITHOUT a breathing tube!

Happy day... little did she know today would be the best day

of her life! Pre-Op

 

 

Waking up... The light was a little bright

 The BINKIE is back!

Daddy getting ready to give his little baby away 

to get her new liver

Such a daddy's girl...

S

Saying out goodbyes outside the OR

T

Take her away Doctors... Harmonee- you are in 

AMAZING hands!

First picture of Harmonee after the transplant

Our New little one! Post Transplant!

All done up getting fluid, and LOTS and LOTS of blood!

Quote by Dr. Scaife 4/18/2010 : "There is not one single Red Blood

Cell in her body that she has produced herself. We gave

her 30 times her body mass of blood during transplant."

 Our new wee Harmonee... Its a little graphic but we can't 

put anything on her for a little while longer.

Another Surgery... Another Day

Harm is back in surgery. This time to take out the sponge, clean out the old nasty blood, wipe off her liver, get out access fluid and repair some blood vessels. If everything looks okay today, she will go back into surgery tomorrow to finish attaching bile ducts to her new liver, and then once again go into surgery Friday to close her up completely, or so thats the plan as of now! I will keep you updated through out the rest of the time in surgery.

Out of Surgery!

Harmonee is out of surgery for now. They were unable to control the bleeding therefore her tummy will be left open until her new liver kicks in and helps her clotting times! Her liver is... for the most part... completely puzzled in except for the bile ducts. The bile ducts will be hooked to something else (I'll explain better once the doctors can stop running everywhere long enough to explain and answer questions) for the most part we will be able to see her new liver! (I'll take pictures) we are now waiting to see her old liver and see what has been causing so much trouble the past few months! (pictures coming of the trouble maker soon). All in all, surgeons say transplant went the best it could have!

I am so grateful for the doctors and surgeons and nurses here at PCMC. Natilie brought some chocolate overdose cookies to me this morning for her congratulations! Dr. B, O'gorman, Scaife, Jackson, etc etc etc... have all come in to say how much of a fighter Harmonee is and is very proud of her! I am too! She takes after her daddy with her stubbornness (didn't ever think that trait would come in handy until now)

Update...

Hour 13 of surgery. Harm has lost a lot of blood, so the doctors have called in back up. The renal doctors are now going to go into the OR and drain some fluid through dialysis and replace it with blood products. After which they will finish attaching her liver. Amy (transplant coordinator) came in and said it will probably be 4-6 more hours.

Brandon and I have been taking turns using our parent room in the PICU getting sleep. Brandon took the first 5 hours and I was able to take the last 4, now I am having a hard time staying awake. I had a dream about going to Harmonee's little donors funeral, also one about Harm and her donor switching spots and us being the ones planning the funeral, writing an obituary and starting the mourning process for our own little baby instead of waiting for surgery to end wondering who her donor might be. Either way, I am eternally grateful!

Recent Update

Gail, our nurse who has been keeping us updated all night has just called to say that Harm's new liver is being sewn in, and they are able to stay ahead of the blood loss!

First update

It took them two hours to get Harmonee to give into the sedation and fall asleep! Twenty minutes after they gave us that up date they called us to give another update. Harmonee has ran into bleeding complications and has already lost a lot of blood. This isn't surprising especially with this type of surgery. Therefore the doctors are catching up with blood products. They also said that the liver isn't even here yet, and they are hoping it will be with in 45 minutes!

Delays...

The transplant was delayed two hours. The new OR time is at 8 p.m. The doctors are resting up and the time hasn't yet changed again, and everyone seems hopeful that it wont change again. So far everything is good! Harmonee is sleeping after a long day of smiles and squeaks! She doesn't know what is going to happen, but I know she is relieved!

The liver was perfect sized... therefore it was a baby, or newborn that is donated to Harmonee. My heart goes out to that family in numerous ways!

Today Is the DAY!

OKAY, FAMILY, FRIENDS,

LIVER MOMS AND PCMC STAFF

HARMONEE'S NEW PINK LIVER

IS FINALLY HERE, AND HARM IS

GETTING PREPPED FOR SURGERY

Thank you PICU team for helping her get here, 

for all of the second mommies that took care of 

her for the past 5 months! And ALL of her

amazing doctors (DR. B, DR. SCAIFE, and teams!)

that took time to go to school and be able to save little

lives like Harmonee's!

Along with all of the good news, Harmonee's kidneys have started working, and she has started to make urine! No more dialysis! She also got all of her breathing tubes out yesterday and is doing fantastic! I can't wait to see her with all of her new things!

I know a baby, child, or adult died today to save my little Harmonee life. I don't know who it was, or how they died, or where they where, who was there, who they were leaving behind, or anything else. I can't express how grateful I am to them, and I hope that I will be able to meet them some day, and tell them thank you!

No Change

The doctors have started to "ween" her of her ventilator. They said that kids with big tummy's like Harmonees breath faster then normal, because of this she gets tired faster and needs to work her lungs into having no support. I am still a little nervous about her going off of it.

Harm's sun tan is coming back, and she looks the best she has since we got admitted. She has completely turned around from the day that we signed the DNR The PICU team has saved her more then once this hospital stay, and has gotten her back to where we could discontinue it! 

I over heard Dr. B talking to the surgical team about a potential donor for Harmonee today. But that was the last I heard about it. Just now one of her assistance brought operation papers to put in her chart. Lets hope this is the weekend! 

Harmonee got a good scrub today. It was a better sponge bath then we have been able to give her since she was off dialysis for a while so they could clean the machine. She actually smells like a baby! All clean and ready for surgery!

Still waiting...

Our sweet nurse Heather made 
this little head band for Harmonee!

Harmonee is doing great. Not a lot of change with anything. The doctors are still debating on weather or not take her breathing tube out or to just leave it in. They are a little afraid that if they take it out that she will stop breathing, go back to the oscillator, and be overlooked for transplant. With Harmonee's luck, they would get her all unhooked, a liver would come in and she would have to hook back  up.

The nurses didn't know what they were getting into with an awake Harmonee, even though some of the ICU nurses said that Dr. B, and some Infant Unit nurses have told them she is a little feisty. My sassy little baby was taken off sedation last night for a couple of hours. They call it a holiday here. During her holiday, she kicked out the IV in her foot, tugged at the breathing tube (in her mouth down her throat), NG tube (the one that sucks her tummy) and her NJ (feeding tube). She also somehow moved her wrist that she was able to get her art line lose... lets just say BLOOD EVERYWHERE!! Today the doctors have her sedated. Harm is a little mad she can't open her eyes more then 30 seconds with out falling back to sleep or kick and squirm like she was. Instead she wiggles her hips and twists her shoulders, this change has made her cry crocodile tears all day.

This weeks has gone by slow. Only Wednesday, and I have thought it was Friday. I wish there was somehow we could get a remote, fast forward time to the day of transplant, and push PLAY!

Maybe a liver tonight?

Two Weeks

F

Fighting the drowsy, as always!

C

Crossed legs trademarks 

Two weeks. That is it! Seems like days since Harm has been in the ICU. But then looking back, I lose the last week and everything seems mushed into one. Now the days seem to never end when I know that her liver can come at any minute, and Dr. B and Dr. Scaife will walk in and start getting her prepped to go to transplant. 

Harmonee is still doing FABULOUS! The talk about taking her breathing tube out is still in working progress. Then they will let her eat by mouth. I got to scrub her down 3 times yesterday. She is back to her normal super heated body, with no fever, and has been sweating a ton laying on her back. The nurse she has had for the past few days has been really good at switching her sides, and letting Harm cross her legs and feet as long as she doesn't kick at her IV. Everyone who knows Harmonee, knows she is MUCH MORE comfortable with them crossed.

Harmonee is still on dialysis, but her renal doctor thinks that after the transplant it wont be much of a problem and they will be able to take her off of it soon after.

 Its been a LONG two weeks....

Day 13...

The doctors have started to let Harmonee eat 5cc every hour on a continuous drip through and NJ tube. (NJ- goes down nose into intestines--keeps her from vomiting). This is pretty good considering she was eating 7cc every hour through her NG at home before we came to the ICU.

Harm has been being a good girl all day. She has kept all of her blood labs and stats in good range, making the doctors even talk about taking her off a ventilator completely in a few days! They have started to do her spontaneous breathing intervals where the ventilator lets her do all of the breathing.

All in all Harmonee is doing great! Best day she has had since we arrived in the ICU!

HAPPY MOTHERS DAY

I half expected walking in this morning to be either the same, still climbing, or something had happened (sounds bad but when your on this roller coaster EXPECT ANYTHING). I was actually a little scared to come in an see that we were back to square one, I knew Harmonee could do it, but would the doctors be okay with her building herself up? 

HARMONEE IS AWAKE!

Wasn't expecting that, along the nurses saying her ph balance and CO2 was picture perfect!! She was crying tears, (kinda sad, but made me happy) and wiggling and her big BLUE eyes (no yellow--today) wide open! The doctors are impressed, all of her blood labs are "picture perfect" as I keep hearing. AND she gets to eat, through her NG but still its something in her tummy for the first time in 12 days!

If I didn't think this day could get any better. Brandon called to tell me Layla is feeling a lot better and he will bring her up this week to see me, not Harm, just me, she might be a little mad about that, but I sure do miss her and can't wait to see my little girl again!

My sleepy girl

Daddy sent this to me and sis for motivation,

one big sis healthy... baby sis is next

Goodbye Oscillator, Hello Conventional

They took Harmonee off the oscillator ventilator and put her on a conventional ventilator. She did great during the switch, and as stubborn as she is... she kept trying to breath on her own and not with there help. They thought that was pretty funny, but a good sign as well! They said that her trying to breath, along with how her lungs sounded, meant that her lungs aren't as diseased and failed as they were thinking.

Today is also day 11 in the PICU, day 11 on dialysis AND Harmonee's 7 month birthday! As all the doctors come in to say "Happy 7 months" they give us the hope of a liver next week! Not one of them with anymore doubts. I have heard that Dr. Book is pretty good at tracking down livers, so I'll leave it to her.

 GOOD-BYE OSCILLATOR

HELLO CONVENTIONAL

Day 10

Harm is doing AMAZING! The doctors have made closer changes to different ventilators, no blood pressure medicine and not much sedation. She is still so fragile and crashes so fast, that I am a little nervous for them to go any faster than they already are... though it is the subject of the plan today! They said she is improving faster than they are, therefore they are going to go her pace. Yay Harm... but stress mom out! Slow is good. (Remember that in the future Harm)

Everyone keeps teasing that she is laughing at everyone right now, saying how silly we all were thinking that SHE was going to actually get this far and stop! The doctors have started to come in asking "How's our little comedian doing today?" She is testing them. The doctors and nurses always think very hard, and detailed to make the best decision about every patient, she is making sure of that. Kids here are in great hands. Just ask Harmonee!

Our week at Home!

A FEW PICTURES FROM OUT DAY OUT OF THE HOSPITAL

Not all.. but some! We had lots of fun!

My little love doing her favorite past time

...watching TV

 

She was a little grumpy. Notice they eyebows? 

She was throwing her bow off.. Layla would

pick it up and give it to her so she could

growl and throw it again. It was kinda cute.

 

This picture is a little blurry... mainly cause 

I need a new camera, and Cael was

rocking her car seat. I tried to get a picture of

Cael in here too, but he would see the 

camera and jump down! It was really cute! This

was at Joshes funeral.. I never found her bow...

 

Liver clinic gets a little boring waiting for the 

Doctors to come in
 

Time out side playing with sis's birthday presents!

Verdict is in...

ALL thumbs up! Harmonee is officially waiting on a liver! In the mean time, they will continue to help her get stronger (which there still are/has been many improvements today)! As of now, a perfect sized liver is needed at ANY TIME!

PRAY she does not crash again!

Thank you for all of you many prayers!

They are certainly being answered!

Deadline Set... Transplant Pending

Harmonee has days to a week to get a perfect sized liver. She has taken a few more baby steps in the right direction, with the nurses backing off on as much support her lungs are getting from the oscillator. Since the doctors don't know if these baby steps will get her to the point that they want her to before transplant, they said they are going to start making arrangements now with the whole team instead of waiting until Monday to reevaluate her. Dr. Book has high hopes that she could make it through a perfect sized liver transplant, but nothing bigger. Today the surgeons are going to meet and discuss if she should even be a candidate for a transplant. I hope if Dr. B thinks she is... then the other surgeons will too. 

Today I talked with Dr. Book. She asked me if I want to continue trying everything I can, meaning--go ahead with the transplants knowing the risks of her passing. We both agreed to try the transplant since she thinks if it is a perfect sized liver that it would work, bring her lungs, kidneys and heart "back to life" with it, rather then "pulling the plug" and letting Harmonee go home to pass away, when she may have lived by trying the transplant. Now we are waiting for surgeons approval. As soon as I get word of a YES or a NO I will let everyone know, (mainly cause if its a 'yes' which the transplant team thinks it will be, I will be to excited to not blog)

Day 8

Harmonee just got out of the OR from closing up her tummy and switching out lines. The surgeon came out and said she did great! Now we start another waiting game to see if closing her tummy works. Dr. Scaife said she was losing to much protein and to many white blood cells to keep her open. Keeping them in her body should help her heal her body better.

There has been no change since yesterday. No better, but no worse either. Her little body is getting tired and she is still very sick. Her liver is completely failed, her kidneys are in failure and they are hoping to save her lungs before they being failing. The doctors are still hoping to plan out her future with a liver transplant, but they will give her another week. On Wednesday they will have a meeting to see if they will allow her to have a transplant or not. If not, we will take her home and be with her until her body fails. If we are allowed a transplant she will have one within hours of the go ahead and we will spend the rest of the hospital stay recovering. I personally have no doubts about her recovering! The doctors are amazing here, and they still have things to try and a lot of hope for her! I hope by June we will either be home, or in the ICS with the other liver babies.

PLEASE NO VISITORS!

WE CANNOT TAKE CHANCES!

Sorry everyone who came that I had to turn

you away after driving so far.

...Few Steps Back

Harmonee is back to how she was Saturday. We are back to the DNR but still hoping for the best. Her blood pressure meds are back on to help keep her at a stable level. Along with back on the oscillatory ventilator, and her new central line has grown out a staph infection. 

Dr. B said she is not a good candidate for transplant though she still feels it could be a possible out come. The doctors said that they are walking a thin line if she will be able to recover or not. Anything could push her over right now. So again. No visitors. We cannot take the chances of anything right now.

I am so thankful I got to see her beautiful eyes and tiny smile yesterday. Come one Harm, fight, fight, fight!

Dear God

Please keep all of our little liver babes in your thoughts.Hold them in your arms. Rock them to sleep when we mommas cannot, help them fight when they are too tired, give us strength when we have nothing left, give us hope when we are to give up, and PLEASE bring GOOD LUCK of HEALTH, LIVERS, and PEACE to all of our liver loves. Amen.

Miss London

Everyone has been emailing, text messaging, and calling me asking how our two little liver babes are doing. Harmonee... is doing great! As I updated earlier. Miss London has been in good spirits all day, and her mom and dad are relieved that rejection was ruled out fairly quickly! HOORAY! Liz has updated her blog http://liverforlulu.blogspot.com/2010/05/best-medicine-gods-hand-big-fat.html 

What amazing parents she has! Looking forward to May bringing good tidings to all of our little liver kiddos!

Blue Eyes

Harm is doing GREAT! Her gases and stats are all normal!! Her infections have come back negative for the past 4 days now, meaning... TRANSPLANT IS BACK ON! Now we just need an offer, which shouldn't take long. We are out of the danger zone and the doctors are all very confident that biliary atresia wont claim this liver babe! Harm is 1A or first priority and as long as she is free of infection the next liver is hers!

They took Harm off of her oscillatory ventilator (breaths for her @ 480 breaths a minute) onto a conventional ventilator (30-40 breaths a minute and she breaths with it) This means... sedation is off and my little love can wake up! It will have been a week tomorrow since I have seen her dark blue (yellowish) eyes! The sight of them today was a great treat for me, and Harms adopted aunties. She wiggled her toes, gave a little smile and a few minutes later a little giggle. Of course she is to weak to do much, but she is coming back better then EVER!

Little London and Harmonee under the same roof

So since I have been a little busy lately Liz (alpha 1 liver mum) has been updating Harm's blog of disasters of diminishing health, and her triumphant baby steps of progress, and posting pictures when I wasn't able to. Now it is time for Liz to update everyone about her little love who was just admitted through the ER a little over an hour ago. Poor little London is back again, with a high fever. Wishes go to Liz, James, and especially London that this is just a quick reunion. Wonderful Mommy and Daddy are here with her for a sleepless night to keep her comfort while they take the steps of finding out what is wrong.

http://liverforlulu.blogspot.com/

Wee Harmonee

As of last night, 9pm Harmonee was stable.  Well, stable being a relative term- she was holding on.  Harmonee has had offers for a new liver but she's been too sick to receive them.  Right now she isn't even a candidate because she is so ill and infected.  If she can go 3 days with clean labs she will be re listed as

the highest possible status and would likely receive a good offer within days. 

Mum and Dad are holding on to some hope but being very realistic as well.  They have signed a DNR for Harm and hope that when/if she passes it will be peaceful and provide life for others.  This is an amazing couple.  Farrah has been at Harmonee's side day in day out through every hospitalization, missing her little Layla.  Brandon has been in ARMY training during much of Harm's hospitalizations but has luckily been relieved for the time being.  What time he's had he divides between balancing his family and working very hard as a welder to make ends meet.  He's an amazing guy.  I'm lucky to know them.

Continued prayers for them and their baby.

"Be Still and know that I am God"

Psalm 40:10

xoxo

lizzie

alpha1, liver mum