Hi, it's Laurie!
Thank you all for your thoughts and prayers. Luckily Krisalyn has remained in a private room with DH and I this entire time so I have been able to nurse her directly and just pump if too engorged or they are taking her for a new IV. She has had several and we need to be here for a full 14 days to finish out the meds. As long as things continue to go well we will come home next Thursday March 1st.
Because the lack of good veins and the medicines potency and potential to infiltrate and burn her skin they have been very cautious. We had two options left yesterday. A PIC line which is started in a vein in the hand, foot, leg, arm or head and a catheter is threaded into the chest . Or a Central line that is surgically placed under anesthesia into the chest past the lungs near the heart. At first they were not giving us much hope for the much easier less invasive PIC line. But a neonate doc was confident and was able to place a pic line in her hand succesfully. This line should hold out for the rest of our stay and eliminated the need for any more poking or sticking my little princess.
My sister, who started this thread has been amazing. The girls are happy and thriving at her house. They talk to us on the phone daily and almost daily come for a few hours to visit. Since we are on a quaranteened floor they can't stay in the room but get to stop by and see thier sister then either my mom or sister stay with the baby while I take them to one of the many play rooms and spend some one on one time with them. I miss them so much and Gabi has not wanted to nurse any while I'm here. I hope she resumes when we return home.
Things are looking good right now. Krisalyn has not had any fever and we just feel so glad that this was caught so early. We were told that it was a blessing that we had her at home. If she had been born in the hospital she would have had the normal newborn exam on day one and it would have been too early to catch. I only made the apt. with our pedeatrician that Wednesday because my mom is her nanny and she wanted to do a routine assesment since she had not yet been seen by a doc. They don't normally look in the mouth but I mentioned that it looked like she had molars coming in. She called them pearl somethings but assured me no incoming teeth yet. Whew! But this caused her to see that her throat was very red. She looked further with a light and a tongue depresser and saw blisters on the back of her throat. She then referred us to a specialist near the childrens hospital were throat cultures were done and we had a round of labs. We went home expecting it to just be a huge fluke. But the hospital called and said to return immediately. They said if I had not seen my Pede when I did we would not have caught it and it would have spread to her central nervous system and killed her within days. It is very scary to think about all of it. I am just so thankful we had the homebirth then saw the Pede and she is doing really well. She is just beautiful.
More pics below, taken by my friend Lynsey.http://share.shutterfly.com/action/welcome?sid=8AYs3LFw2ZtlFkg¬ag=1
I am holding up well. My mom is with Krisalyn in the room right now and I am using a hospital computer in a play room, just trying to escape for a few min. Thank you all for your support and prayers. We are looking forward to returning home and I will update when I can.