Kennedy 1st Month

September 10, 2008

I can't believe it....My little girl is already four weeks old. It is so bitter sweet. Kennedy is starting to move around more and open her eyes for about an hour or so on a daily basis. Her edema is beginning to subside - she is staring to look more and more like a little girl instead of plastic doll. She is receiving daily physical therapy and seems to really enjoy it. The doctors are still waiting for tests to come back from the Mayo Clinic in order to find what is plaguing Kennedy. They genetic tests normally take about two weeks (rushed), so we should have some answers by the end of this week. I will be requesting to speak with her head attendee tomorrow to get an update from the horses mouth. It is so hard waiting and waiting to for an answer. By looking at her I just can't imagine that something so serious might be wrong with her - she looks so PERFECT!

Brian and I are staying as involved as they will let us be. We are able to feed Kennedy through her gavage tube, change her diaper, suction out her nose and mouth, give her a sponge bath, help rotate her, rub lotion on her, and perform her evening PT exercises. I swear I can do more, however, I don't think they permit parents to much more. By the time Kennedy is out of this place I am going to know how to work almost every machine in that darn hospital.

Kennedy had to get another IV placed in her head. Now she has an IV on the left side and a PICC line placed on the right side. It looks so barbaric, however, it is the easiest way for them to get an IV placed into her. It is not easy to get an IV placed in her anywhere else. Her veins are pretty much shot. They are either hardened, collapsed, or blown. Whenever they try to place an IV in her hand or foot they have to poke her over and over, however, with her head they are able to get it first go around.

Kennedy is also really beginning to tolerate her "cares" a lot more. Cares are performed every three hours. They consist of turning her, suctioning out her lungs and mouth, performing any lab work that has been ordered etc....It is so nice to finally be able to sit in the room while the nurse performs her cares. Brian and I had a couple of scares when she first arrived at Loma Linda. The nurse was turning Kennedy and she clamped down and stopped breathing - I didn't even know that babies who were on vents could make themselves stop breathing. She began to turn red and her saturation dropped rapidly. Her oxygen saturation should be in the high 80's and 90's and hers were falling in the teens. The nurser began hand bagging her but nothing was working. Kennedy began turning blue and one of the nurses got on the loud speaker and paged all doctors to Room 4. Withing fifteen seconds 20+ doctors rushed in the room. Another nurse escorted us out and told us she would come get us once Kennedy was stable.

When I look back at Kennedy's first month of life it makes me feel so much pain and sorrow. I feel horrible that she has had to endure so much pain and anguish in such a short period of time. A babies first month of life is supposed to be a time when they learn to develop a bond and trust with their mom and dad, however, I feel like I have failed Kennedy in all these aspects. Her days and nights are full of pain and sickness. She is not able to do anything that her brain and nature have programmed her to do.

I sang peanut "happy birthday" today - I know it is corny, but you have to celebrate everything you can when your life is spent in the NICU.

Enjoy the pics!!!

(Above: Kennedy's first picture at 1 month old)

(Above: Kennedy is sucking on her two fingers - something that she has never done. Maybe this is a sign that she will be able to pick up on nippling once her vent is removed)

(Above: Kennedy wanted to show everyone that she can open her eyes)

(Above: Kennedy asleep in her favorite positon on her belly with her blankies that Grandma specially cleaned for her - they smell like heaven, no wonder she was so comfy and her numbers were awesome when we left)