Throughout the whole day today, Kayleigh was in a somewhat stable position. Her sats were hanging around the high 80's - low 90's. She had been sedated several times because of her irritation to other's touching her or the vent tube she hates, which is causing her to gag. Her oxygen was higher than we would like to see (67%) and her nitric is at (20ppm), but it was doing it's job of keeping her oxygen saturation where it needed to be. It is the toughest thing as a parent to sit there and watch your child in so much discomfort and not being able to talk or touch her in fear of it agitating her more. Our comforting touch was not good enough right now and that breaks our hearts.
The first problem that is another unknown in the doctor's eyes is Kayleigh's heart rate. All the signs of discomfort, desaturation and hypertension can be side effects from the urinary tract infection, but the problem with her heart rate is unknown. Right now, Kayleigh's heart rate is resting in the 70's and active in the high 80's. That is no where near what her norm is (rest- 115/active - 140). The Echocardiogram is supposed to give some more understanding on why the heart rate is so low. It was completed this afternoon, but we have not gotten the results back like we hoped. I will update you as soon as possible.
The second problem has to deal with the antibiotics they are administering to Kayleigh for her UTI. The side effects include fever, flue like symptoms, high blood pressure and a few other issues that have slipped my mind. Being that Kayleigh is not in a stable position with her pulmonary pressures, it is quite concerning to the doctors when having to deal with these side effects that could take place very soon. Kayleigh's pressures were low before she went in to a pulmonary hypertension episode due to the UTI. Right now, her pressures are high and the side effects of the antibiotics can very easily cause Kayleigh to go in to another hypertension episode. All we can hope for is that when she goes in to an episode, it is caught quick enough to stabilize with the amount of nitric, oxygen and sedation. The scary part is she is already being given nitric, oxygen and sedation right now, plus battling with a low heart rate for some unknown reason. So in other words, this situation would be like adding gas to an already open flame.
Just look at this photo above. When you see a car seat, you think of new life, security and the excitement a family will cherish forever with their newborn's life. To me...This photo looks empty. Most of you out there hope and pray that Kayleigh will get passed yet another hurdle that is place in front of her, when you may not realize the small things beyond the NICU walls that are effected by our situation. The feelings and emotions deep down that no one can understand unless they have been there before. They are practically an impossible emotion to grasp when praying for a family like us who are in this position.
Walking out of the NICU today was by far one of the most emotional walks we have taken from the hospital. We were supposed to bring her home today, but instead, we brought home an empty car seat. We passed many people who's faces would brighten up, look down and then realize there is no precious little baby to see. One lady in the elevator looked down at the empty car seat and looked right at my face, not knowing I was watching her every move from my peripheral vision. I noticed the complete change in emotion on her face as she was probably thinking a million thoughts on what could possibly be going on in this family's lives to be walking out of the hospital with an empty car seat.
The hardest part was putting the car seat in the seat we planned to buckle Kayleigh into for the very first time. The moment we had been dreaming about for months was the time where all of us were in the car together for the first time and all the doors had just been shut. It is the time right before the car is started and we look into each other's eyes and smile, knowing we really have beaten all the odds. This was the defining moment that was supposed to happen today, and it didn't. Aimee and I lost it in the car and cried because we could not hold back our emotions. The emotion is so overwhelming that your heart just crumbles in a million pieces. I am a man who doesn't let the tears roll so easily, but I lost it.
Please pray for two things: 1) The doctors will find out what is causing the low heart rate and it will be fixed ASAP. 2) Kayleigh will not have any major side effects that will cause her to go in to another pulmonary hypertension episode.
Thank you & God Bless,
The Freemans :)