Hello all my family and friends!
I have added many names to our update list, so I want to start by givin a brief background on our situation.
For those of you who don't know, Tia and I are expecting our second son. He is due to be deliverd via C-section on August 13th at 10:30am. He will be born a very sick boy. He has a condition called Congenital Diaphragmatic Hernia. What this means is that there is a hole in the left side of his diaphragm, the barrier that seperates your bowels from your upper chest cavity. Because of this hole, some of his small intestines and entire stomache is currently located in his chest. As a fetus grows, it is vital to have all the room possible in your chest cavity so that your lungs have ample room to grow. Because Ethan's bowels are taking up the space the room the lungs need, he will be born with at least one underdeveloped lung. The concern is if his left lung is pushing against his right lung, then we may have two underdeveloped lungs. But at this point we don't know that for sure. Also, his bowels are pushing his left lung behind his heart forcing his heart against the front of his chest cavity. His heart beat is strong with no signs of distress. It may be in the wrong place, but it is working just fine.
This complication is correctable, but it is the side effects that will possible bring Ethan's life to a premature end. When Ethan is born, he will have to be intubated immediately. Three to five days after birth he will have to go into surgery. At this point we are looking at possibly August 18th for surgery, but that is tenntative. The surgery is a fairly simple procedure involving invasively entering the chest cavity, pushing his bowels below the herniated hole, and placing a patch over the hole (only two stitches). Then his left lung will move back into place, relieving pressure from his heart which will then move into it's proper place while also relieving pressure from the other lung. He will have two to three weeks to recover. In that time, all the doctors we have spoken to said he will have a 65% chance of full recovery. Even though 35% mortality is fairly small, it is big enough to worry Tia and I. They say that if he can pass his two to three weeks, he should live a long and heathly life with absolutely no other complication except shortness of breath...ok, so he won't be running any marathons.
One of the main side effects of this condition is something called Pulmonary Hypertension. With an underdeveloped lung, the veins surrounding the lung is also underdeveloped. Think of the veins on a regularly grown lung being the size of a quarter in diameter. The veins on the underdeveloped lung will be the size of a dime. The heart will try to push the same amount of blood through the dime vein as it normally would a quarter vein. That creates very high blood pressure in his lung. But the blood flow will still be lower than normal. Less oxygen will enter the blood stream and be delivered to the body. This will result in rapid fatigue throughout his life. Also, because his heart will be working harder, the muscles that pump the heart will have to grow bigger to compensate for the hypertension. This means he will have an enlarged heart throughout his life as well.
Now for the present...
There are many side effects of this ranging from Chromosonal, Neurological, Pulmonary, Circulatory (of pertaining to the heart...not sure of the word). We will not know the extent of the side effects until we do a blood panel can be taken and tested after he is born.
We had a chance to visit the NICU last thursday. It was very hard to see all the sick babies in there, and then to think that ours will be one of them. But the hardest part of all of it was to hear the Manager of the NICU tell us that Ethan will be by far the sickest baby in the NICU.
For those of you who are planning on visiting Ethan in the hospital, we encourage this 100%. We want our big boy to know how much he is loved. There are certain, for lack of a better word, "rules" that the hospital and ourselves ask that we all follow. The only information that the hospital will give regarding Ethan will be given directly to Tia and myself. Please do not call, or ask the hospital for any updates, they will not give you any. Also, if you wish to see Ethan, one of us has to be with you at all times. Otherwise the hospital will turn you away. We ask that you do not bring any cameras. The hospital does not care if you take pictures, but Tia and I feel it would be inapropriate. Think of a day you were really really sick, would you really want a bunch of people comming up to you taking your picture. It's the same for him. Also, he will be in a room with up to 4 or 5 other very sick babies. We ask that you respect their privacy and confidentiality. You are able to touch him, but we are not allowed to hold him. If he takes a turn for the worst, they will make arrangements for Tia and I to hold him, other than that...no one is allowed to. The fear the hospital has is that if too many people try and hold him, it will stress him out and become counter-productive to his recovery. Also, it minimizes the rish of pulling out, or unplugging one of his tubes or hoses. If you want pictures, Tia or I will take pictures for you, and send you as many copies as you would like. We will also be posting pictures in our future update emails.
I am sorry this email is so long, in the future, they will not be! But for now, we could use all the prayers in the world. This has been really hard on Tia and I so far. All we ask for is a little emotional stability from the big man upstairs!
We appreciate all the support from all of you! We have our big informational appointments on thursdays, so we will be giving you the majority of the updates on thursdays.
Take care, all of you, and God Bless!
- Kip, Tia, and little Riley -
p.s. If you do not wish to recieve any more of these updates, that is ok with us. Just write me and I will take you off the list!
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