So it has been NINE days since we were last able to hold precious Karter. Thankfully that all ended today when they finally placed her in my arms. It felt so good to hold her, much like the first time. I was just overwhelmed with emotions and a warm good feeling that flooded my body like a flash flood. It came on very fast and seemed to engulf me; however, unlike a flash flood that almost always passes by quickly this feeling lasted. I think it has me on cloud nine! Nothing is better than holding your baby. The time you get to hold them while they are still little is already, in my mind, limited and to take nine more of my precious days away was enough!
So Karter is doing wonderful, she did get to have her lines that connected to her heart removed today. Her lung x-ray from yesterday, June 15th, showed great improvements from the 14th. However, we have not made any progress today and have even made a slight step backwards on the x-ray comparison. They took her up to 15 liters to help relieve her lungs from the heavy work they were having to do while having a built up of fluid in them. The high amount of flow they gave her also was suppose to help her from having a collapsed lung. This flow did help in that it brought her lung back up. They took her down to 10 liters today even though she did not show much improvement from yesterday's scan. They did this in order to see if her little body could start to move out that fluid on it's on without the help of the vapor therm. Hopefully we will show some more improvements on our next morning x-ray!
Karter still has a feeding tube but it bypasses her stomach and just feeds into her abdominal area in order to make sure that the stomach does not put too much pressure on her lungs. They hope to move the tube back into her stomach by the first of next week and then begin feeding her through a bottle. We still have a little ways to go but we are defiantly able to see the light at the end of the tunnel. A few days ago they were worried about a potential infection but ALL of her tests have come back negative! Thank the LORD! They are still having to give her some platlets every few days but hope to be able to cut this out as soon as her lungs are good and healthy.
Today was also a very difficult day for me. I have been doing so good up to this point with everything. This morning our social worker came up to see us with some great news about a new disability program for families like us who do not qualify for any other government aide such as Medicaid and disability financial help. While it was great to hear that she would now probably be able to qualify due to her extensive stay in the hospital it was also a hard realization for me as to why she would be considered disabled. I do not think that Down Syndrome is a disability. The state on the other hand does. While I know I should be happy that we will be getting a little bit of help in providing this sweet girl with everything she needs it is also heart wrenching to me that people might look at her and think of her as disabled. To me she is nothing but normal. She is my sweet angel. She is going to go on and do great things in life. I hate how something so small can still knock me down like running into a brick wall. You would think that her other issues would effect me in a greater way but no it is the simple reminder of being classified as disabled, for having down syndrome, that turns my world upside down. While I know this will get better with time I just wish it still did not hit me so hard. I do remind myself though that she does not have to be defined by this so called "disability". She is simply beautiful baby Karter, my sweet little cuddle bear. I most certainly will not let her or our family be effected badly by this blessing, we will only rejoice in all of the good qualities that it will bring into our life. We will live and go on about life just as normally as we did with before with Addison.
Over the next few days I hope to have nothing but good news to relay to team "KAM" (her initials) as some of Terri's workers call themselves. We hope to not have any more complications on her road to recovery, and if we do I pray that we head them off far enough in advance that they become absolute! Even though I can not wait to get home I would much rather for Karter to take her sweet time and ensure a great recovery! God bless you all for your prayers, thoughts, and love! I am continuously blown away by every one's friendship. I would like to especially thank Austin Gipson for putting Karter at the top of his prayer list! What an awesome young man he is to already know the importance of prayer! Great job Megan!
Love,
The McHams'
Hi Tara, you do not know me, but my Mom works with Bonnie Ellis and we read your blogs every night after our day is winding down. I have added your family to our prayer list at church. Karter is so precious and I love hearing how she improves every day, each little step is really in fact a large step. Keep your head up and know that you and your family are in our prayers and thoughts.
ReplyDeleteAll our love,
Debbie Sprung and Suzanne Hall