Sunday, July 19, 2009

Preparing for Heart Surgery

July 19th, 2009 Well, well. It is Sunday night and I have had a day of rest! Unbelievable! As most of you probably gathered, I really needed one! Last week was quite the week, other than everything I posted last time, I brought Kadin and Sierra home with me and my 85 year mother joined us here Monday through Friday. It did not allow me much time at Chloe's bedside, but did allow her parents some time alone with her there and got the siblings out of the hospital scene for a bit. We all really had a pretty good time here, the whole feeling of extended family was very positive and I wish we could do it more often. Yesterday, in the morning, Lance, Jennie and I met a very, very special family. Robyn, Anthony and Faith live in a suburb of Denver and have been in contact with us since early on in the Chloe story. Faith is 2 1/2 years old and has Goldenhar Syndrome, which is one diagnosis we have come upon for Chloe. The other is Treacher Collins Syndrome, which actually has been ruled out with genetic testing. Faith's mother, Robyn, has also blogged Faith's journey and we have learned so much from her! She has offered so much support that means so much because she has 2 1/2 years of this behind her! Faith began some of the work to build her jaw when she was just four moths old and her parents have offered much advice about doctors and medical centers that they have come to trust and count and on to help make their daughter whole. Meeting little Faith was like shaking hands with the future and opening a great big box of HOPE! "Faith, hope and love, and the greatest of these is love". Robyn brought us a whole lot of all three and we are once again reminded that God provides in all ways. We all needed some positive energy flowing through our bodies and Robyn and her family delivered for sure. Anthony is Sierra's age and a very, very nice big brother to Faith. They all got along so well, played while we talked and we plan to get them together again as soon as we can. Thank you, Robyn. You are another God sent angel. Miss Chloe, Chloe, Chloe. Chloe has been having pretty decent days, readying herself, I believe for her surgery on Tuesday. No sign of infection has been seen for some days now and Tuesday will be here soon. She has had a few abnormal breathing episodes which were fairly scary for Jennie, Grandpa and Lance but handled by the staff well. I guess Chloe's stats have not been reading exactly right during these episodes and she has turned blue because of the lack of oxygen for a moment or two while adjustments were made. Thank God Jennie is alert and intuitive, she knew something was wrong when the machines said things were fine. This just points once agin to the necessity of the heart surgery. I'm sure that all of you will keep Chloe in your thoughts and prayers that day. She is scheduled for the surgery to begin at 7:30. Jennie, Lance and Joe were given a tour of the cardiology operating room and NICU on Friday. Joe reports it being extremely intense for him, Lance and Jennie were full of questions, as they have been along. Never were there two parents that I have ever encountered who have embraced the unknown and sucked it in like a sponge in water the way they have! They are both going in to this as prepared as they can be. From what I understand, the surgery will take 6-7 hours, we have been told that we should not at all be surprised if it goes much longer, they often do! Chloe will be having two holes that are in her heart repaired and it is an open-heart surgery. Doctors say that the first 48 hours are the critical time and that they will not necessarily relax until Friday. That sounds like a lot of hours to me, but we all know that God will send legions of angels to protect Chloe, will send special guidance to her medical team and will hold this family together through the stressful times. I am thanking God every day that this group has continued to grow, I know that many of you have spoken to friends, congregations, whole TOWNS in spreading the word of Chloe and the family's needs. Prayers will NOT be in short demand on surgery day or the recovery days thereafter. THANK YOU! I have been attempting, since about the third week of Chloe's life, to establish a trust fund or special account that people so inclined could send monetary donations to. Many people have asked about it and some have sent donations directly to me. Setting up a trust fund has proven to be complicated and costly. I attempted to set up a Paypal donation button but when that was all said and done, I needed a website, which I don't have. This last week, as it became more apparent how bleak the financial picture is looking for Jennie's family, I knew it was time for me to get this job done. The news stations won't cover a story until there is a place for donations to be put, it has just been a vicious circle. So, if you would like to help the family with even the smallest of donations, I think I have it set how to do so. I have one step to finish on a site called Chip In, I will be posting the link here. Hopefully, it works! As Chloe's story has become more and more complicated and we are aware of the years it will take to arrive at a place where Chloe can lead a normal life, the more I know it is going to take a village to do it. I know that little donations tend to turn in to bigger ones when placed together. I pray no one feels offended by this request and please, know that we need your prayers as much or more than anything else! God does provide in all ways and it will all come together in its time through all channels. So, another long post, but one with some energy behind it and it seemed a lot of news. Tomorrow, I will see Chloe, and may stay in Denver in order to be there early Tuesday morning and not have to deal with traffic. Most of my time will just be spent there and the kids will not be around the hospital. There is a room that Jennie and Lance will be allowed to stay in the first two nights next to the NICU. I will have my computer with me and will keep you updated as much as possible. Until then, God bless you all. Going into this with all of you makes me feel a whole lot better! Love to all, Nancy P.S. I have just been shot down a bit trying to get Chip In directly on this page, because I am a computer goon, I guess, and can't understand something about javascript and this computer. I will ask someone tomorrow to help me. I have posted the link up above under Chloe's picture, under website. Hopefully, it works!

No comments:

Post a Comment