Saturday, September 19, 2009

Chloe 's Long Awaited Update 9/18/09

I sincerely apologise for not having updated much lately. I have been in the middle of what has seemed to be a very long move and have not had an internet connection at the new house. Thankfully, my cousin who is staying here for a few weeks, Gia, has the Wi-Fi card and I have been able to jump on for the bits and pieces you have gotten. I will be back up and running on Saturday morning if all goes as planned.
Chloe has been doing well, although these weeks turning into long months still at the hospital is taking its toll. I want to clarify for newer members of this group that I am Chloe's grandma. I started this page soon after she was born and it has turned into a good communication tool and also a great place for me to let my thoughts run amok! That being said, as her grandma, my life has resumed some normalcy. I am seeing some students, have spent more time with my aging mother and have had some time with my husband. This has been a godsend to me. Unlike Jennie and Lance, I am beginning to feel rested at times and have been able to actually make choices about what I do in a day or who I might see to engage me in something fun on a particular day. I say this in this manner in order for you to better understand what my daughter and son-in-law still go through on a daily basis. They now have Sierra in kindergarten in her home school 63 miles from The Children's Hospital where Chloe has lived since birth. Life moves forward for Sierra, but the added stress placed on her parents in order to stay in their home, in their neighborhood, yet still remain true to loving, cuddling and keeping fear away from Chloe so far away in another city is certainly becoming trying, at best. There is only so much that one can withstand, and I feel that my so loved family is so close to the edge. They also have Kadin, 3 1/2 years old, who spends so much of his young, sweet years being traisped back and forth from home, to hospital to Ronald McDonald House. I'm sure he has no clue in his 3 year old brain what to make of the life he now leads. My son-in-law works hard at his roofing job, makes the trip to Denver and back after seeing his baby daughter whom he loves so dearly almost every day of the week. My daughter hardly knows up from down, doing her very best to keep everyone fed and clothed and on schedule and on and on. And my absolute most admired person in the universe for the love she shows to Chloe in every other moment she has! She basically knows exactly what to do throughout the day and rarely needs call on a nurse for assistance. She is so hands on and has learned more about nursing a baby in the NICU than I ever imagined anyone could! She has become tired though, discouraged and beaten down by high hopes being dashed at just about every turn. It is very important for me to express the level of encouragment that I hope will be showered onto not only Chloe, but on Jennie and Lance after you read this. They have become afraid to hope...and this is the saddest tragedy of all to me. We must all have HOPE! If we do not, if we we cannot trust that good is awaiting just around the corner, what is left? Each time Chloe has been close to making great strides, someting occurs. You all know that...a virus, an infecton, g-tube and stomach issues, high respirations or bladder infections. Something that sets her back! We have all been waiting ever so anxiously for Chloe to reach that 13 pound mark, as the home ventilator will be placed in her hospital room and HOPEFULLY several weeks after that she will be sent home with home health nursing and my granddaughter can experience some of what life is outside the confines of a 12 by 12 room! She has slowly been doing her vent trials, which offer only a small amount of pressure into the lungs from the vent, mostly relying on her to breathe for herself. These were going well and I was filled with HOPE! The docs were taking it a bit slower this time and Chloe was reacting well. Jennie kept telling me to not get my HOPES up, that it was still necessary to go one day at a time and deal with Chloe on a daily basis. It is the way she is able to function! I agreed, but also stated that I would continue to look ahead, because that is still in me to do so! Yesterday, Chloe failed a trial within a minute and a half, repirations went up, oxygen level dropped and she turned blue. Pressure trials have been discontinued...Jennie is so very sad! We know, that at 13 pounds, changes will be made. Time frame for getting her home now is between Thanksgiving and Christmas. That gets her to 7-8 straight months in the hospital, with no outside stimulation, gives her parents 2-3more months of uncertainty and stress and truly begins to make us all wonder just what is going on! Chloe has bgun to show some behaviors that babies show after long periods in the hospital. She is tired of being messed with, she is scared of yellow masks and gowns, Jennie says she feels that Chloe is becoming depressed. There are certain inate milestones that babies reach, Chloe is stuck pretty much a machine and is not getting the stimulation she needs to have or most likely expects in her developmental chart that was set eons ago! So, right now, at this time, we wait. We wait for Chloe to get bigger and pretty much have accepted that it will just be a ventilator she goes home on. That is fine, that is GREAT! At least she will go home!
My pleas are for prayers for Chloe's continued good health, her consistent weight gain, her not giving up on us...knowing that we will be there ever step of the way. My prayers for Jennie and Lance are to find the strength, the endurance, the HOPE, the FAITH to KNOW, by no uncretain terms, that they have the support of thousands of people, that if asked, many, many people will be there to uplift them and support them any way they know how! They are amazing people, amazing friends, giving, loving, sharing people, that you would be proud to personally know. They have been tested SO hard. To endure this in this first year of marriage has been quite the challenge. A great therapist, Geoff laughton(look him up on here) has offered to give some pro bono sessions to help them keep their feet on the ground! I know he can help them to find their center once again...time is of the essence but such a valuable commodity. They are having a hard time connecting to see him. So, my friends and famiy, I feel big prayers are needed. It is said that God will find a way when there is no way. It is said that God will not give us more than we can bear. Help us, dear ones, to continue belief in this tenent. It hurts me very much to watch my loved ones experience pain. Let's get Heaven once again FLOODED with prayers, for all things good and wonderful for this family. They are deserving, Chloe has fought a massive fight, and is winning! She needs to get home! her family needs her to be well enough to TAKE HOME! Thank you all for all you do! Thank you if you have ordered candles or made donations to the bank account. Just paying for gas to and from Denver to Ft. Collins is a real killer! Another friend has started another fundraiser here in CO. Feel free to do what you can in your state. Thank you for all the ideas you send my way. Thank you for GROWING this group! It won't be long before we are at 4,000! I just know it. Love and blessings of light and laughter to you all, Nancy

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