I apologize for not updating sooner...
Because it has been a crazy couple of days. I asked Duane to put together more of an explanation of what's going on. I am in Tennessee & I'm watching my mom's business while she is in Phoenix being supportive & caring for Andie's brothers! And because my mom's business has me on the phone A LOT, our communication lacks at times. And when we do talk it goes something like this:
Me: "Hi. How's the baby?"
Mom: "She's doing good."
Me: "Okay good. The other line is ringing!"
Mom: "Okay, we'll talk later"
See, short & sweet. As long as I hear she is doing good, that is sweet. I am so sorry for being selfish with the news. Between Duane & I we vow to keep better updates.
So now that we got all that taken care of, for why you are really here....
The last couple of days have been up and down. It seems we would get Andie's SAT (Blood/Oxygen Saturation) to the level we want - 85 - 95% but then her blood pressure would drop and her heart rate would rise. So you can see where the frustration is.
On Wednesday morning they were talking about putting Andie on the ECMO because of her SAT. But the doctors increased her Flolane (a med that opens up her lung vessels) and all of a sudden she started to show quick improvements. She started in the low 70%, down to the low 60% SAT range. But after the increase in med she climbed up to the range we want her at.
Some are asking what the problem actually is, so I'll do the best I can.
Andie came in with 2 problems - the first was the coarctation of the aorta and the second is prenatal pulmonary hypertension in newborns. (PPHN). PPHN is where the blood vessels in the lungs are tight and constricting not allowing blood to oxygenate. The Coarc was repaired when she went in for emergency surgery on Monday. They were planning on putting Andie on the ECMO at that time as well. After surgery they said the repair for the Coarc was successful and didn't feel the need to put her on the ECMO because she was stable even after the surgery.
Since then we've been up and down with the stats - for her blood pressure, SAT, heart rate, and vein pressure. The doctors have been a symphony conductor of medicines. They try this, try that, mix this with that, don't mix this with that, this needs to be in an IV by itself, this one is ok to be mixed, blah, blah, blah.... Totally unbelievable. If you look at the pumps she has 13 pumps pumping some kind of medication. We call the rack of pumps - the tree of life.
Reminds me of the staging lights at a dragway.
Andie had a good night last night. Basically she's had good nights the last two nights. I've learned to look at her progress in 24 hour blocks. She looked better last night than the night before. And better the night before, than the night before that. If we looked at her any other way OR looked at her monitor (which shows all her stats) all the time - we would drive ourselves crazy. The numbers will go south in a New York minute and she'll recover back to normal in a matter of a few. But those few seem to be an eternity.
Our goal is to maintain her SAT and keeping her heart rate and blood pressure where they need to be. They are constantly administrating different medications. One of the medications they give her is Viagra. Apparently Viagra has been around for sometime for pulmonary reasons and one of the side effects was a...... you know.... an erection. So they spun a marketing spin on it and named it Viagra and sold it to millions of men.
To let you know where she is at this moment - she's has been pretty stable since after the ECMO scare on Wednesday. After the meds she shot up her SAT and they decreased her oxygen level down to 50% (she's still on a respirator where the machine is breathing for her). They check her blood every four hours for toxicity. They increased her respiratory and oxygen level (up to 65% now, she started at 100%) to push out the carbon monoxide. The last blood work showed improvements. This morning she started to go south again, but this time they wanted to remove her umbilical cord IV and put a new PIC in her groin area. When she was first admitted into the ER on Sunday they set up an IV in her umbilical cord. Apparently they can use the vessels in the umbilical cords for a week or so after birth. It's one of the best places to start an IV because the vessels are where they need to go.
So this morning the performed a small procedure to place the PIC. Brooke and I had to leave the room while the surgeon did the work. We thought it would be a good time to get a bite to eat and get out of the hospital. We went to First Watch which is a place the serves breakfast and lunch. We love that place, but we don't leave the hospital too much.
They are running the Flolane directly in the new IV and we think the short fall she had this morning was due to plumbing and they feel that this should work now. They also turned down her oxygen level to 52%. At this moment her SAT is at 82% - we want it to get back into the 90-95% range. Yesterday she didn't have any passing of urine, which was alarming to everyone as well. They gave her Lasix to help decrease her fluid levels and puffiness. This helped with Andie urinating. She is extremely puffy but has started to lots better with the flushing of fluids.
She is constantly getting x-ray'd for this or that and this morning she had another Echogram. The echogram showed her heart doing what it's supposed to and they checked the pressure in her lungs. So today should be a good indicator where she's going.
Andie will remain in ICU until we don't know. We keep optimistic on her developments, but sometimes our humanness comes out and we are just overwhelmed with emotions. This is the worst thing that Brooke and I have ever experienced. So if you have children, please give them a hug and be thankful that they are alive and healthy. So much is taken for granted until something like this happens to you.
I'll be more diligent in passing along information.