Never Mind

As is usual for Idaho, the weather changed its mind and decided it still wanted to snow!

So much for the park

Moving On

So life is beginning to get back to a new sort of normal. It was so gorgeous outside, I decided to open the back doors so Sammy could enjoy the view...

The cows in the backyard mooing us good morning is still the same, though! :)

Sammy showing Mommy the "moo-moo's" and mad that he can't go chase 'em

My sweet, ever happy little guy! As you can see, it looks to be a gorgeous day, even for Idaho, so maybe we'll go find a park to play at this afternoon, yay! Sammy loves being outside!

Kaylie's Funeral

Kaylie's funeral went very well. All those who participated did a wonderful job in helping us to honor our little angel. The weather was beautiful despite a forecast of rainy, windy, cold weather (what else could you expect from Idaho?)

Our eternal family

We would like to ask any friends and family to please send us any pictures you may have of Kaylie, the funeral or any events relating to this so that we can complile all photos onto a CD for whoever would like one and so I can put them in the scrapbook I'm doing for Kaylie. E-mail to Robert at robert.skousen@gmail.com. Thankyou!

These are molds of Kaylie's hand, foot and hers and my hand intertwined. A very special gift from my sisters and mother of which I am so very grateful for.

We would like to thank everyone for their kind thoughts, words of encouragement, and prayers on ours and Kaylie's behalf this last month and a half. You never realize how much you are loved until something major like this happens. We are still grieving the loss of our precious little girl, but we have found peace and comfort from Heavenly Father. Sammy is slowly learning to love us again, but I think he knows we always love him. Again, thankyou for the prayers, words, flowers, support and love you have all shown to us and we hope to be able to return it in the days to come.

Funeral Details

Sorry it took me so long to post this info, it has been a long day. Kaylie's funeral will be held on Saturday April 25th, 2009 at the Rigby East Stake Center which is located right next to the cemetery. To find the church and cemetery coming from Utah, you get to Idaho Falls, take Highway 20 towards Rexburg. Get off on the first Rigby exit and turn right at the first traffic light. This is Highway 48. Drive about a mile and both the church and the cemetery are on the north (left) side of the road, you can't miss it. The viewing will be from 1:00 to 1:45 pm and the funeral will begin at 2:00 pm. Family are invited to a meal following the services. If you have any questions, please let me know. Thank-you again to everyone for all your comments, we appreciate all who have expressed their condolences and love for us.

Kaylie Renee Skousen

On Sunday we blessed Kaylie. The name we gave her was Kaylie Renee Skousen. We recorded the blessing and typed it up for whoever would like to read it since we weren't able to allow everyone to be there. If you would like a copy, please either e-mail me or leave a comment with your e-mail address.

She looked like an angel in this beautiful dress and with the sunlight coming in the window from next to her bed

But, our sweet little Kaylie returned home to her Heavenly Father last night. We had a care conference with all her doctors and specialists yesterday and it was concluded that her liver was unrepairable and that she was not a candidate for a liver transplant. So, after allowing family members to say goodbye, a little photoshoot and doing hand and foot molds, we sat and held our sweet little baby until she left to be in a better place where she will no longer be suffering. Kaylie was such a sweet little spirit and we are comforted by knowing that we will see her again. Anyone who can and wishes to attend the funeral is welcome to. We will be having it in Rigby on Saturday afternoon and once more details are decided, I will post them. Thankyou, thankyou, thankyou to everyone for all the prayers and love and well wishes, they have truly helped us during this difficult time in our lives.

Fishing on Friday

Robert having a great time fishing - it was great to get away from the hospital and de-stress

Candace and Daniel showing off their "mad skills"

Sammy's trying to figure out just how all this fishing stuff works and Daddy is just enjoying being able to hold his little boy again - we both miss him so much!

My dad and little brother Matt. This picture is what we in my family call a "Classic with Dad"

Sammy checking out the fishies the boys caught

Yummy snacks and staying warm with Mommy

Surgery

So yesterday at rounds, the plan for Kaylie was to simply continue replacing what she was losing and hoping the specialists would begin coming up with answers, or at least ideas, to what is going on. But, when we came back from lunch, the surgeon came to speak with us and basically said that we had two choices: #1 withdraw treatment and let Kaylie go or #2 do a liver biopsy which means surgery that she may not survive due to her inability to clot. Of course the answer was obvious to us, we had to try. The reason being the hematologist (blood specialist) needed to look at the liver cells to see what has been causing her liver to not function properly. So, late last night they took our little girl into the OR and opened her abdomen. Another complication is that she has been receiving tons of fluids, but has not been excreting the extra fluid, so she was getting all puffed up and made it impossible to close the incision. Today she was continuing to bleed enormously, so they wanted to take her back into surgery to redress the site and to try to help with the bleeding. They had to seriously pump everything they could as fast as they could into her and then rush her in and quickly do the surgery - it was so scary! Also, we got the preliminary results from the biopsies and they determined that it is probably not a tumor, but that the liver cells are definitely abnormal and they believe it is probably a metabolic disorder that we are looking at. And, as usual, the genetic results are still not back.........or at least no one has followed up with them. So Kaylie is stable for now and hopefully they will begin all the testing to check for and begin ruling out the various metabolic conditions she could possibly have so that we can begin treating her effectively.

Code Blue

So sorry it has been a while since our update and as many of you may have guessed, it was not for a good reason. On Friday Kaylie had a major relapse and is now in critical condition. The story can be long and involved but I will try to shorten it without leaving out anything important. On Friday around noon while she was recieving her feeding via NG tube, Kaylie spit up a large volume of breastmilk, leading her nurse to believe that she had aspirated some not only because of her history but also because her color wasn't good, so she called the neonatologist and the nurse practioner to come look at her. It became apparant pretty quickly that Kaylie needed help breathing, so they put a tube down her throat and hooked her up to a ventilator to help her breathe. They found out later that she actually was breathing just fine, but it is better to be safe rather than sorry.
Then, after they had gotten her all settled and I was back by the bedside watching the nurse give her meds and get her situated, she began bleeding from her mouth and from the other end and her heart rate dropped. At this point they called a code blue, which means cardiac arrest and everyone comes running. Kaylie was resucitated and they began working on stabilizing her bleeding, which was everywhere in her GI tract and from every place they have poked her for an IV.
Kaylie is still very critical and is bleeding on and off. They have determined that she went into septic shock, which has caused her to go into what is called DIC where her clotting factors clot to each other instead of her blood, so she has nothing to clot with. They have been giving her every type of blood product they can to try and stabilize her from Factor 7 to plateletts to fresh frozen plasma, but the DIC won't resolve until they clear the infection that is raging within our little girl. She was put on general antibiotics, but was not put on one specific to the bacteria until today.
Another major issue Kaylie is facing is because she has had to recieve so may transfusions, she is very, very swollen and overloaded with fluid, but her kidneys were affected either by the infection itsself or the shock she went into because of the infection and she has not been making very much urine to get rid of the extra fluid. She is also having very low blood sugars because of the stress she is under with fighting the infection.
The neonatologist and nurse practioner have decided that this may be bigger than they originally thought (gee, really?), so Kaylie now has a nurse practitioner, neonatologist, geneticist, infection control, GI specialist, oncology specialist, developmental specialist and surgeons all working on her case. Currently they are all working on their piece of the puzzle to help figure out just what is going on with Kaylie, but they have moved back to square one with the thought of this having to do with the mass on her liver and that it may be cancer.
I think that is pretty close the whole story. Sorry if it came across confusing, but I am writing this quite late and after a very long weekend, but we wanted to let everyone know what is going on. Robert came down on Friday and will stay until we have some answers and until Kaylie starts doing better instead of worse. We appreciate everyone's concern, love and prayers and know that you all would like to help in any way you can, but really the best anyone can help us right now is to simply keep us in your thoughts and prayers. We hope you all had a nice Easter weekend and know that we will do our best to keep you all updated so you don't worry needlessly.

Up-to-Date Pictures of Kaylie

Kaylie with her "getup" which includes a respirator, two monitors and five I.V. pumps

Our sweet little girl. The taped tube is the one helping her breathe and the darker one goes into her stomach to remove the blood

We decided that we would just go ahead and buy a new camera since there is no hope of getting our other one back, so we will be able to post more pictures now

Daddy saying goodnight to Kaylie - it is so hard to leave, even just for a little while

More Blockades

So the transfer is good to go, but our little Kaylie isn't just yet. They did a swallow study today which revealed that her decreased muscle tone is allowing her to aspirate a small amount of milk when she eats (this means it goes down into her lungs - not a good thing). So, she is on total tube feedings until she gets stronger unless she is fully awake and even then I am only allowed to feed her 10 to 15 ml (about half an ounce) of thickened breastmilk. And, she lost weight again last night, so they are uping her calories again to see if we can get her to gain weight and become more alert. So until they can clear her of all specialty care she needs here, we won't be going home to Idaho. As to how soon they decide that, your guess is as good as theirs, just we just keep waiting and hoping and standing by our little girl - what else can we do?

Back to Idaho?

Just a quick little blurp that they are looking into being able to transfer Kaylie back to EIRMC, hooray!! That would mean that Sammy and I could go home and be with Daddy again and even though it would be hard to not have Kaylie home yet, it means we are one step closer!! She is up to full feedings and they are supplementing my breastmilk with more calories, but she is only taking in about half of it through her mouth. They also determined today that she probably isn't swallowing well in addition to not sucking well, so we'll continue to work with her on that. Thank you to everyone for all your prayers, they are helping!

Doing Things Her Way

So, Kaylie was doing great....and then decided that she needed to show us that she is still the one in control and digressed a little bit. We had been on full breastfeeds, but apparantly she doesn't have a "nutritive suck", meaning she uses more energy to get the breastmilk than she earns from it, so she lost a lot of weight and started needing more oxygen and her heart rate would drop very low, which was scary. But now they are giving her full feedings through her nasogastric tube so it doesn't take any energy to get and today they will start foritfying my breastmilk with extra calories so she will put on some fat so she will be able to maintain her body temperature and graduate to an open crib. We found out that she does have a genetic condition, but it isn't as simple as something like Down's Syndrome, so once they figure it out, I will tell you all about it. She is also still showing signs of an infection, but they can't find proof that she has one anywhere, so they are beginning to think that it may be her genetic condition that may be causing what they are seeing and not an infection. Simply put, she still isn't quite ready to go home and more waiting for more test results which will most likely lead to more scratching of the heads (no wonder why so many drs are bald!) We'll keep you all updated and hope you all enjoy Conference this weekend!