It has been a very long 48 or so hours here. So much has gone on and so many well wishers and visitors have been that it has been sometimes difficult to focus and process all that is going on. But here's an update.
Katie has what is called "Congenital diaphragmatic hernia". It affects about one in fourth thousand live births. This defect is a result of the babies diaphragm not closing entirely during development, which allows her bowels to encroach on what is essentially "free" growing room. As the lung is a hollow organ it is very easily displaced. She currently has at least one loop of bowel that goes nearly all the way to her collar bone, and apparently her liver is also in this space, and laying a bit on it's side, therby causing a dusruption of the circulatory system as well.
Depending on how early this breach occurs, determines how much lung development took place. We are hoping that it occured later in development and that she has a moderate to normal sized lung behind the other organs. However, we still understand that the possibilities are still very strong that there will be a greatly diminished and stunted lung on her right side. At present the left lung appears to be mostly normal and doing its job, albeit under great pressure from the right side. This has kind of squished her heart and left lung to the side and compressingit slightly against her rib cage. Not only is this condition relatively rare, of all of the cases only about 5% are on the right side. We would have had much better odds winning the lottery.Here is what has been done for her. If this gets lengthy, just close it out and come back later. I look forward to sharing with all of you, as it is somewhat theraputic.
When she arrived via lifeflight to Duke, (I actually beat them here), she had already been fiesty enough that she had pulled several of her lines out. She took a while to stabilize. Katie was initially put on a ventilator to help her keep her oxygen levels up. She had begun to show signs of repiratory distress early at Rex. She had to have an IV inserted into a vein in her head. She had to be given a unit of blood about 1:00am. This was to increase her blood volume in order for it be able to carry more oxgen. She again began showing signs of distress around 3:00am. She then had to be put on a different ventilator. It is called a high fequency venilator which gives her about 420 breaths a minute. It is was explained to us it is like a dog panting in order to more quickly remove the Carbon Dioxide build up in her blood. They have also had to switch her from oxygen to a mixture of Nitrous Oxide. This also also reduces the build up or production of CO2. At first it was a bit difficult to see her with this new device as it moves a lot of air rather quickly and obviously makes her jiggle a bit. Just like a dog panting after a long run.Around 7:00am a PICC lin was insterted into an artery in he leg. A small tube was then ran from that location through the blood vessel to near her heart. This allows quicker distribution of medication through he blood stream. This line also allows fluids to be given, which allowed them to remove the IV from her head. Another line was actually placed in a blood vessel in her ubilical cord and stitched. This allows them to be able to draw their blood samples through this line rather than having to poke her repetitvely.She is given a pain medication in order to help her rest and tolerate all of her new plumbing.
We are unable to really touch her as any outside stimulation causes her to respond and want to move, cry, etc. If she swallows air into her stomach it can pass on through her system until it reaches the loop, or kink up where her lung belongs. This causes a ballooning effect and even greater pressure. She has another tube down her throat into her stomach in order gently syphon off any air she may swallow, or any gases that may form.She also has "shades" over her eyes to keep light out, and Bose head phones with "white noise" to drown out any outside noise stimulation.
This has been one of the hardest parts. She is so beautiful, and we love her so much, but we are not encouraged to touch her. Beth was allowed to touch her briefly when she finally got here from Rex. I have decided to not touch her until such time as she is stable enough. I do not want selfishly and needlessly endanger her any further.
Now for correcting this issue. We are expecting the surgery to take place on Monday or Tuesday. We will know more when we actually meet with the surgical team. I know that this happened for some reason. I am really very comforted to know that it is happening over the Easter Weekend. What a wonderful tesitmony Katie is going to have. We are so thankful that our Saviour came here and was persecuited and crucified and ultimately resurrected to pay for our sins. We will never know the sacrifice that was made for us, we just have to appreciate it. I find comfort as well that so far Katie's darkest hours were in the early morning hours of Good Friday, and perhaps her greatest strides toward stabilization towards surgery may happen on Resurrection morning.Praise the Lord!
I am attaching a photo of Beth being able to touch Katie for just a few seconds. This will give you some indication of the level of care she is requiring.Thank you so much for your thoughts and prayers. The many e-mails and phone calls have truely been a blessing. Beth has commented about how much of a response we gave gotten from the Triton family. Your outpouring of love has truely touched both of us, and your continued prayers are helping our little girl. Keep them coming.