Avery is home now! She's been home since Monday night and we are loving it! She is the easiest baby I've had, really. I was nervous to have to deal with her oxygen but she hasn't had any problems so far. So sleeps most of the time and when she is awake she just hangs out and looks around. I can count on one hand the amount of times she's cried and it's never for very long.
The kids are loving on her too. Clark, Hailey, and Penny all have coughs so we have kept Avery in our room and have had to be careful about not letting them in. They are dying to get feeling better so they can hold her and play with her.
Logan, getting some cuddles in...
Wren has a had a very bad week.
Monday night, after we headed home with Avery, Wren was very lethargic and not very responsive.
By Tuesday morning she was re-intubated and back on the ventilator. Her CO2 levels where at 103 according to her blood gas (a normal baby's is in the 40/50 range). Levels this high can result in a comma or be fatal so the ventilator was her only option. The doc put her on 3 different types of antibiotics just in case she had another infection and they collected some cultures from her ET tube and sent them to the lab. 3 different nurses, 2 nurse partitioners, and 2 doctors each attempted to place a useful IV but her veins kept blowing. After far too many failed attempts they where finally able to place one in her scalp and administer the antibiotics and pain meds. She had to be heavily sedated otherwise her oxygenation levels would drop drastically. She spent much of Tuesday night with her oxygen at 100% regardless of being on high amounts of morphine. We're are grateful she made it through.
Here she is all drugged up. My sweet baby...
By Tuesday morning she was re-intubated and back on the ventilator. Her CO2 levels where at 103 according to her blood gas (a normal baby's is in the 40/50 range). Levels this high can result in a comma or be fatal so the ventilator was her only option. The doc put her on 3 different types of antibiotics just in case she had another infection and they collected some cultures from her ET tube and sent them to the lab. 3 different nurses, 2 nurse partitioners, and 2 doctors each attempted to place a useful IV but her veins kept blowing. After far too many failed attempts they where finally able to place one in her scalp and administer the antibiotics and pain meds. She had to be heavily sedated otherwise her oxygenation levels would drop drastically. She spent much of Tuesday night with her oxygen at 100% regardless of being on high amounts of morphine. We're are grateful she made it through.
Here she is all drugged up. My sweet baby...
Wednesday it was confirmed that she had pneumonia yet again. The IV in her scalp didn't last long and they were quickly running out of ways to give her the meds she needed. The docs considered giving her another PIC line like she had when she was a newborn but in the end decided a broviac catheter would be best. A broviac is when a tube is surgically placed in the neck and into one of the veins under the collarbone. The catheter is long enough to reach the large vein that goes to the heart.
They got ahold of the pediatric surgeon on call and got the catheter placed right away.
Wren, post surgery. You can see the tube coming out of the right side of her neck...
They got ahold of the pediatric surgeon on call and got the catheter placed right away.
Wren, post surgery. You can see the tube coming out of the right side of her neck...
Thanks to the broviac, she quickly received all of her meds and was put on a morphine drip. By Thursday her oxygen had come down to the 40s and her CO2 was back down to the 70s which is still high but fairly normal for her. She'd retained a lot of water though and weighed about 10 oz more than she should have. She had to get a catheter to help her get some urine out and was put on hydrocortisone to hopefully help with the water retention as well.
Puffy baby...
Today (Friday) she's still hanging in there. She's been awake off and on and her pain levels aren't so bad. The antibiotics seem to be doing their job and her latest x-ray showed that her lungs are clearing a bit. She's still having some pretty significant desats here and there. She's also been having some periodic drops in her heart rate which the docs speculate are bronchospasm but could also potentially be seizures. She has an MRI scheduled for tomorrow to make sure it's not the latter.
Because of this latest episode she will almost certainly have to get a tracheotomy. I believe in miracles without question as we have seen many throughout this process so I haven't given up hope yet. We will have to wait and see what happens.
Even with all of these setbacks and trials I am grateful everyday that I get to be Mom to these sweet girls. God knew what he was doing when he sent their precious spirits to our family. I can't imagine my life without them in it.
Puffy baby...
Today (Friday) she's still hanging in there. She's been awake off and on and her pain levels aren't so bad. The antibiotics seem to be doing their job and her latest x-ray showed that her lungs are clearing a bit. She's still having some pretty significant desats here and there. She's also been having some periodic drops in her heart rate which the docs speculate are bronchospasm but could also potentially be seizures. She has an MRI scheduled for tomorrow to make sure it's not the latter.
Because of this latest episode she will almost certainly have to get a tracheotomy. I believe in miracles without question as we have seen many throughout this process so I haven't given up hope yet. We will have to wait and see what happens.
Even with all of these setbacks and trials I am grateful everyday that I get to be Mom to these sweet girls. God knew what he was doing when he sent their precious spirits to our family. I can't imagine my life without them in it.
Oh Shannon. This is such a bittersweet post. I don't even know what to say. Our thoughts and prayers are with you.
ReplyDeleteLove you and the family
ReplyDeleteI am amazed at your courage, love and faith. Those babies are so blessed to have come to you as well you to them. We are praying for your happiness and peace through every day of this rocky ride. We have thought of your family a lot this weekend as we are staying in the beach house at Bethany beach that we stayed in together 4 years ago! So much has happened since that weekend. Time goes by so fast and we miss you. Love your sweet family ��
ReplyDeleteSaying you are in your prayers doesn't seem like enough. But you are and I promise we are praying fervently. You are completely the Lord sent these girls to your family and He knew exactly what He was doing. We love you guys!
ReplyDelete