A little disclaimer before I get started: I feed a little one at five and decided to stay up to get stuff done. If anything in this post is gibberish and incoherent just skip over it, and remember that I don't sleep through the night right now.
So here's the long of it all. Shilo has Down syndrome. About 50-60% of children with Ds have heart defects. There are a few different types that can come up. Shilo had two that had to be repaired, but technically had five heart defects at birth. Her two big ones were a coarctation of her aorta, and a complete AV canal. Two months ago these things meant nothing to me, so I will do my best to explain them.
The coarctation just meant that part of her aorta (the heart valve that carries oxygen rich blood to the rest of your body) narrowed so much that her body was not getting the blood flow that it needed. This was the defect that was repaired at six days. The doctor cut out the part that was narrowed and reconnected the two ends. It is unlikely that anything else will ever have to be done here, but there is a small possibility of scar tissue forming at the sight of the repair causing the aorta to be too narrow again. If this happens they would likely put in a stint to open it back up.
Her second bigger defect is the one that will be repaired through open heart surgery between four and eight months. Your heart has four chambers. Each side has an atrium and ventricle. The heart is truly a complex thing, but the best description I can give is that on both sides of Shilo's heart the atrium and the ventricle are open to each other, and they shouldn't be. It makes her little heart work harder, and so she is constantly wore out. So add into this occasion anything that takes energy (eating, bowel movements, and crying at this point in her life) and we have a little girl who sleeps almost all the time.
Our biggest battle with it all right now is that Shilo wears out when she is eating. She isn't gaining weight well as a result of being too tired to eat. For the time being we will continue to wake her every three hours and make an attempt at getting something in her. It still isn't enough right now as she just is too tired to eat very much. If this continues over the next few days, we will talk to our doctor about possibly doing an NG tube (tube that goes through the nose into the belly), and whatever she doesn't take by mouth we will bolus through the tube. This way she is still getting enough calories without overexerting herself.
The hesitation for the tube was that they are hard to place (making certain they go in the belly and not the lungs), and obviously more medical type stuff to deal with. A nurse friend has offered to help us in any way she can though so this makes it less daunting right now.
Our other big hesitation is that Shilos is a great eater when it comes to being able to latch and suck. This is something that some kiddos with Ds really struggle with. We want to make sure she does not lose this ability. So after lots of thought and consideration we decided that we could make an attempt at feeding her every three hours still, give it a time limit (we will feed for thirty minutes) and then put the rest through the tube. This way she doesn't lose any ground when it comes to eating. It will also cut back on the amount of worrying we are doing right now over eating and gaining. Little peanut still only weighs 4 lbs and 13 ounces at a month old. We aren't even back up to birth weight yet.
So other than that we like having a second girly. We are tired from getting up to feed her, as it should be with a new baby. Our house is in a little bit of chaos, and phone calls and e-mails have gone unreturned. But there has been snuggling on the couch with two little girls, dancing a playing games with a big girl, and endless kissing on the head of a little girl. So all the important things are still being taken care of.
|Loving her sister.|
|Papa and Shilo napping together.|
|Both our girls swaddled.|
In love with two girls,