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 :)

She is definitely a fiesty little girl! Whenever the nurses turn her she will open her eyes and give them a look (the top picture they had just turned her so she has her eyes open and her fist balled up!). They have been giving her extra sedation medicine because she has been waking up and fighting the breathing tube. She has a lot of spunk! :D

Update- Sunday

Well we are still waiting to get her off of the ventilator. The ICU and ear, nose, throat doctors told us that they were going to take her off of the ventilator on Friday but Friday morning they called and said that they were going to leave it in. We were so disappointed. They took her to the operating room and replaced the breathing tube with a larger one because she was having trouble keeping her oxygen levels up with the smaller tube now that her airway was opened up a little more by her jaw moving. She did much better on the larger tube. Then we were told that they would take her off the next day (Saturday). That didn't happen because she had fluid in her lungs. Same thing today (Sunday). We are trying not to get our hopes up but it is so frustrating and discouraging to think everyday for the last three days that we will get to hold her tomorrow and then be told last minute that they aren't going to do it. Please be praying that she can get the fluid out of her lungs so that they can get her off the ventilator and for peace and patience for us!
~Corin

Breathing Tube and PICU

Hello everyone,

  Well Amarie is supposed to wake up tomorrow (Friday, April 24).  They are going to take her into surgery in order to remover her breathing tube.  We are so excited to see her little eyes again!  She will have to spend at least another day in the PICU, but after that she should be able to move to another less serious room.  She will have to be monitored for another week, but at least she will be awake and breathing on her own.  The jaw continues to grow as the doctors adjust it twice a day.  This will contiue for another 7-8 weeks.  Corin will have to adjust it when we take her home.  Everyone has been awesome through all of this.  Corin's mother (Mary) has been over our house and the hospital almost every day.  My mother has been calling every day to check on her.  Corin's sister Marissa has been an incredible emotional support.  Mary's small group has been amazing, they have cleaned our house, made us meals, and have been consistantly praying for us.  Our friends Laura, Hannah, and Jesse have made us meals and dog sat while we needed to be at the hospital over night.  Jim (Corin's father) has been at the hospital on a regular basis too.  My aunt's are pitching in to pay some of our utilities this month.  The Tucker's were very generous with some gift cards.  Thank you everyone who has been so amazing, and if I forgot to mention your name I apologize, there are just so many people who have helped us through this.  Thank you everyone!

-Jason Orean

Update-Sunday

Amarie is doing ok but is still having a hard time getting stable after her surgery. Her blood pressure continues to be low. The nurses are slowly trying to wean her off of the dopamine but her blood pressure keeps dropping. Her pulse has gone back down which is good because it was high earlier. She had fluid in her lungs this morning but it was ok this afternoon when they repeated the chest x-ray. She was really swollen all over today which is so sad to see her like that. We just keep praying for her recovery and are counting down the days until she is no longer sedated. We miss seeing her eyes open and can't wait for her to be awake again...not too many parents are hoping for their newborn to wake up!! :)
~Corin

Update- Friday

Amarie is still in ICU recovering. They have been having trouble getting her blood pressure and heart rate stable. She will stay sedated and on a ventilator until Wednesday. We miss seeing her awake and being able to hold her! I went home last night since she was sedated and there really wasn't anywhere to stay...it was nice to be home after being gone for a week (and especially nice to get some sleep after not sleeping for two weeks!) but it was so hard to leave her. We are so glad to have the surgery behind us and to be heading in the right direction. She will go back to the ICU for a day or two after they take the breathing tube out on Wednesday and then will go to the pediatric floor for a while until she is stable enough to go home. Thanks so much for all of the prayers and support!
~Corin

Surgery Update

Well Amarie's surgery went well. She only lost a teaspoon of blood, which is really good. She has a couple of rods sticking out of her head, which is hard to see, but I know it is for the best. She is recovering in the ICU right now and probably will be there for another 5 days. The doctor said she could possibly go home in 7-10 days. We will see. Thank you again for your prayers and support.

-Jason and Corin

Surgery

Well Amarie is going in for surgery today. She did not do well in her sleep study so she is going to have her jaw extended so she can sleep, breathe, and eat better. I am not too familiar with the procedure, but from what I can understand they are going to break her jaw and place some sort of vice and crank in there. This will help stretch and extend her jaw so she can breathe easier. She will be in the ICU for about 5 days after the surgery. The doctors here have been great and I've been told this procedure was created at this hospital. This has put her mother and my nerves somewhat at ease. There are some risks of infection and potential blood loss, but this is a risk with any surgery. The bright side is that after the surgery Amarie should be able to eat on her own and breathe with a lot more ease. We are very hopeful and we have faith that she is in God's hands. Thank you all for your prayers and encouraging words. God bless!

-Jason and Corin

Pictures

Update

We are still at Scottish Rite Children's Hospital and will be here at least until Wednesday. Amarie is doing well...much better now that she is getting tube feedings. She is on a monitor to make sure her breathing is ok and is getting fed breast milk through a tube in her nose. We are all doing well just sleep deprived! She was seen by two more doctors today- a craniofacial specialist and an ear, nose, throat doctor. The biggest issue that is causing her feeding and breathing problems is her small jaw. They are going to do something called a sleep study on Monday where they monitor her breathing while she sleeps. Since her jaw is small her tongue can fall back in her throat and block her airway. If she does ok on the sleep study they will probably send us home Wednesday on tube feedings and breathing monitors and then they will do surgery when she is bigger. If she has trouble during the sleep study then they will do jaw surgery and we will stay here for two weeks. Also, the ENT doctor said that he could not see an ear canal on her right ear so she more than likely will have hearing loss. Thanks so much for all of the support and prayers from everyone! Keep praying!

Love, Corin

Week 37 Back to the Hospital

OK, so I know a lot of you are wondering why we are back at the hospital all weekend. Well let me first say everything is ok and I'm sure it will get better. As previously mentioned in a prior note/blog Amarie was born with a syndrome known as Treacher Collins. This syndrome causes some physical abnormalities in one's facial structure. The severity of the distortions varies from person to person. In Amarie's case she has a recessed jaw. Meaning her jaw is small and it causes some trouble when she eats and tries to breathe at the same time. We have been feeding her every 2 or so hours, as one should do with a new born. Every time we feed her she snorts and sometimes the milk or formula protrudes from her nose. This is because she is not swallowing properly due to her recessed jaw. In other words it is difficult for her to swallow properly. We discovered this during our appointment with a lactation specialist. The specialist referred us to the pediatrician who referred us to the emergency room at Children's Health Care in downtown Atlanta. So we have been here since Friday night. Amarie is doing well. They had to place a feeding tube down her nose and into her stomach to ensure she digests the milk properly. The primary concern was the milk was going into her sinus and lungs, which puts her at risk of infection. We are going to see a geneticist tomorrow who can give us further counsel. Any prayers and encouraging words are greatly appreciated. Thank you all. 

-Robert J. Orean

for more information check out oreanfamily.blogspot.com

Amarie Grace Orean

Well she is finally here.  After a month of labor Corin's water finally broke.  At 9:55 PM Friday April 3, 2009 the water broke and the clock began.  We called the hospital to see if we should come in, however there was no room in the inn.  They told us to wait until morning to check in, unless the contractions got stronger.  So Jim, Mary, and Marissa (Grandpa, Grandma, and Aunt) came over and spent the night at our house.  It was a sleepless night to say the least.  Everyone was so excited that I don't think anyone got more than a few hours sleep.  We arrived at the hospital around 8 am Saturday morning to find that there were still no rooms available.  So we had to wait in a small triage room for a few hours before a bed opened up.  The contractoins were very mild and she was only at 2 centimeters dialeted so there was no rush.  Once we got into the room the doctors started Corin on Pitocin.   This is a drug that helps to increase contractions.  Once the Pitocin kicked in labor was intense.  I never seen my wife in so much pain.  Around 3:00 PM the doctor came in to start the epidural.  Around 3:30 PM he finished and the pain subsided.  At this point Corin was 3 centimeters dialted so we decided to take a nap.  She needed to be at 10 centimeters in order to deliver and the average pregnant woman dilates at 1 centimeter an hour.  So we were preparing for a long evening.  Well at 5:00 PM we awoke from our nap to find out that Corin was fully dilated at 10 cm.  That means she dialted 7 centimeters in an hour and a half.  We couldn't believe that she was ready to push, none the less she pushed and out she came.  At 5:09 PM Amarie Grace Orean was born.  We were so happy.  Poor Corin was not feeling so well though.  She was ill from the painkillers and antbiotics that she was on.  The nurses took the baby to be cleaned and examined while Corin was recovering.  I got to hold my daughter for about 20 minutes while Corin recovered.  Corin finally got to hold her for a few minutes before they took her to the NICU (that is the neo natal intensive care unit)  That was the last Corin got to see her that day.  The pediatrician came in to talk to us a little while later to inform us that she thinks our baby has some sort of syndrome.  It is still not confirmed but we are pretty sure she has what is called Treacher Collins Syndrome.  She tells us that this affects 1 in 10000 babies and it is mostly cosmetic, although hearing loss is often associated with it.  Obviously this was hard to hear, espically only having such a short time with her that day.  God is good and even though that was hard to hear things are working out well.  I will elaborate more on that later.  That night was hard, Corin was ill and tired from the medicine and the child birthing and I was an emotional basketcase.  Jim, Mary, Marissa, Chris (my mom), Bryon and Anna (close friends) were all amazing and very supportive.  I was able to take the grandparents over to see Amarie in the NICU later on that night.  It was very hard telling her good night and having to walking away from her.  I tear up now even as I write.  After a good night sleep Corin and I felt much better.  Amarie was able to come to our room later that Sunday afternoon and we got to spend some much deserved time together.  The grandparents were absolutely in love with her.  Lots of pictures were taken and spirits were much higher.  It turns out her hearing is just fine.  We had some tests done.  Her heart, lungs, and kidneys were all tested and came back fine.  So we are on our way home now and can't wait to start our new lives together.