Two Week Update

Hello,

We have been home a little over 2 weeks now. Amarie is doing very well. She is still on the feeding tube and we feed her every 3 hours and the feeding takes about an hour and a half to complete. So we are constantly feeding her throughout the day with a continuous feeding schedule throughout the night. We have to get up two times during the night to add more milk, but other than that she sleeps pretty well. She gets her distractors taken out on Tuesday!!! We are so excited. The main concern right now is her swallow study she is having done in a couple of weeks. If she doesn't pass she will have to get a feeding tube put into her stomach. I'm not sure what the technical name is for that. It will be better for long term use, but we aren't excited about another surgery. Well that is all for now. Thank you for all your prayers and concerns. God Bless.

-Jason Orean

Home at last

Hey Everybody,

Well we are finally back home. Corin called me Thursday afternoon and asked me to pick her and Amarie up. What a blessing. We have been home for 5 days now and it is such a relief to have everyone back home now. The dogs also came home Friday from the Pearson's. Amarie is still on a feeding tube and she has to be hooked up to a sleep-apnea monitor while we are not holding her. Other than that she is doing great. She is on several medications right now. One is for seizures, the other is for stomach reflux, and the other is to wean her off of the pain killers she was on. We still have to follow up with the doctors over the next few months. We are still concerned about the blood clot in her frontal lobe(although the clot did get smaller on her last CAT scan), and if we are carriers of Treacher Collins syndrome. If we are carriers then there is a 50 50 chance that if we have more children they will also have Treacher Collins. We are focusing on the bright side right now however. We are just glad to be home and together. Thank you all for your prayers and encouraging notes. God bless.

-Jason Orean

Update-Monday

Amarie is out of ICU! :) 24 hours after they extubated her she was transferred to a regular floor. It is so nice to have her out of ICU and to be able to stay with her all the time now (though I can't wait to get home...the constant beeping of machines and staff coming in and out will drive a person crazy!) Amarie is one month old today- hard to believe it. Its kind of sad because we have spent that whole first month (except for three days) in the hospital. She is doing really well though. She is so awake and loves to look around (we still can't get over how exciting it is to see her with her eyes open..we missed that so much!) She is still hooked up to a lot of monitors and is also still on tube feedings through her nose. She had a swallow study today to see if she would be able to start eating orally but she didn't do very well with that and was getting a little bit of the milk down her airway. So she will have to go home on the tube feedings and then they will repeat the swallow study in a month. That was really disappointing because I was hoping she would be able to start nursing. Another month of pumping :/ They are going to repeat the CT scan of her brain tomorrow morning so we are praying that the blood clot and bleeding have improved. Depending on how the CT looks and how long it takes to get all the equipment we need to go home with, the "plan" is that we will be able to go home towards the end of the week. That would be the best mother's day present to be able to take my baby home!!! (I'll post lots of new photos tomorrow when Jason brings the laptop)

Update- Friday

Finally we have good news to share! Amarie was extubated (taken off of the ventilator and breathing tube) today!!! She is doing great...breathing on her own and wide awake. We are cherishing seeing her eyes open and being to hold her. After two weeks it is best feeling in the world. She is going to be so spoiled now because I'm sure we will hold her all the time. She had another CT scan today. There wasn't any change in the blood clot and the bleeding which is good and bad. We are thankful that it hasn't become worse but are praying that it will resolve itself. They will repeat the CT scan on Monday and then decide on the best treatment. Please continue to pray that her body will heal the bleeding and clot and for wisdom for the doctors in how to treat her. Jason and I are so grateful for all of the support and prayers...we could not have done this without each one of our wonderful family and friends!
~Corin

Update-Wednesday

The fluid in Amarie's lungs has cleared and they were able to turn her oxygen down...yay!!! So this morning they took her off of sedation and were going to remove the breathing tube. The ICU doctor came in and said that we were definitely on track to take it out within the hour. A couple of minutes before they extubated her, the neurologist got the CT scan results back and decided that she needed to be kept on the ventilator for another 48-72 hours. While we were really disappointed after getting our hopes up (again) that we would be able to hold her today, we are more upset about the results the neurologist gave us. After looking at her CT scan they determined that the seizures she had yesterday were caused from a blood clot in her brain. The blood clot also caused a little bleeding in her brain. Right now they are just trying to determine if the clot was from surgery or if she has a clotting disorder. They would need to draw a lot of blood to test her for a clotting disorder so they are going to test her when she is a little bigger but are sending Jason and I to get blood tests to see if we have any clotting disorders that could point them in the right direction. They will repeat the CT scan Friday morning to see if anything has changed.
~Corin

Getting the EEG of her brain. She weighed seven and a half pounds today!

Update-Tuesday

Amarie is still on the ventilator. The fluid and swelling all over her body is improving but she still has fluid in and around her lungs. Because of this fluid and the amount of oxygen she still needs they want to leave her on the ventilator. She was anemic (low blood levels..mostly because they have needed to draw so much blood work on her) so she had a blood transfusion yesterday which helped. However..as soon as we get one fire put out another one comes up. She started having seizures today. She had about 8 seizures today before they were able to get her on a medication that stopped them. They did an EEG and we are just waiting to see the neurologist. Hopefully he will be able to figure out why she is having seizures and give us some answers.
Thanks so much for everyone's support and prayers! Sorry we haven't been good at returning phone calls...its been so busy and you can't have cell phones in the ICU. It is such a blessing knowing that we are surrounded by such wonderful family and friends who are praying for Amarie and are so willing to help in any way possible. We couldn't do this without you guys!
P.S. Today is Amarie's due date :)