Gong Home

We got out of the PICU last night due to some overcrowding. So we are now in a regular hospital room. We saw the doctor this morning and he said we are going home tomorrow! We're not sure what time, but we are just excited to be going home. Thank you all for your prayers and support. We will keep you posted as much as possible. Take care and God bless.

-Jason and Corin

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Day 1 after surgery

We are in the pediatric ICU and she is recovering well. She was throwing up last night so they had to stop her feeding but other than that no complications!!! She is very swollen (her eyes are swollen shut...the picture above was taken yesterday afternoon so she looks a little more swollen and bruised today). The swelling will start going down tomorrow. We will be transferred to a regular hospital floor either today or tomorrow (yay! a bed and a bathroom!) She is mostly sleeping and only wakes up and cries every once in awhile. We are so happy that everything is going ok and we are on the other side of the surgery! Hopefully she won't need any more surgeries until she is 2 or 3.

Finishing Up

Praise God everything went well. The doctor spoke with us and said she is doing great and they took her off the breathing tube. This is very good considering last time we couldn't take her off for a while because of complications. She will be a little swollen for the next couple of days. The doctor wants to keep her in the ICU for a couple of days just to be sure she will be fine. She's in recovery right now and we cannot wait to see her. If everything goes according to plan Amarie should come home on Tuesday, just in time for Thanksgiving and boy do we have a lot to be thankful for. Thank you all for your prayers and support. God bless.

-Jason and Corin

First hour update

The doctor's just called to say the intubation went well. Only 4 more hours to go.

Surgery Day

As most of you know Amarie is having surgery today. The surgery will last about 5 hours. They began around 10:30am today. This is the third time we've had to hand her over, and it does not get any easier. The doctors are going to give us updates every hour, so Corin and I will be at Children's Health Care at Scottish Rite all day. We will do our best to post updates as much as possible. We are asking everyone to pray. Please pray specifically for Amarie to heal, the doctors to have skill and wisdom, and for us to have faith. Thank you all for your care and concern.

-Jason and Corin

Lamb picture

[The Lord] tends his flock like a shepherd; He gathers the lambs in His arms and carries them close to His heart; He gently leads those who have young." Isaiah 40:11
It is so reassuring to know that during Amarie's surgery the Lord, who loves her even more than we do, has her in his arms and is carrying her close to his heart!

~Corin

Surgery info

Amarie's surgery is this Friday, November 20 at 11am. She will be in surgery for 5 hours. A neurosurgeon and a craniofacial surgeon will remove pieces of her skull and then use those to create cheekbones and eye sockets for her. They will also do some slight adjustments to her eyelids. She will go to the ICU after surgery for a few days and then to a regular unit of the hospital. If everything goes well we will get to go home on Tuesday...hopefully we will be home for Thanksgiving! Please pray that Amarie doesn't have any complications (we don't want a repeat of the first surgery!), wisdom and skillful hands for the surgeons, quick healing, and grace/rest for us as we go through the third hospital stay and surgery. We will post updates here to let everyone know how things are going and updated prayer requests. Thanks so much for your support!

Sorry it has been such a long time since we have posted any updates. Life is crazy!!! Amarie is doing well with her new tube in her tummy. She gets her hearing aids in two weeks...we are looking forward to the look on her face when she hears us better! She is getting bigger (slowly but surely..she is still shrimpy! She is 4 months old and can still wear newborn size). She weighed 9 pounds 8 ounces this week at her 4 month checkup. She is keeping us busy with all of her doctor visits (we have 8 appointments this month and its about like that every month). Its a crazy life being her full time mom/nurse/secretary! Plus, life has been a little crazy this week because Jason has swine flu. He has been out of commission since monday and has to stay away from everyone for another 48 hours. He is doing much better now but had a really high fever. The doctors put us all on tamiflu so I'm praying that amarie won't get sick!

Another update is about the genetic testing. A few months ago Amarie had genetic testing sent to Johns Hopkins to confirm her Treacher Collins. Well...we have learned to expect the unexpected with her! The geneticist knows that she has treacher collins based on her features but the testing was a mystery. Johns Hopkins is stumped. They have never seen the kind of mutation that she has before. So they did genetic testing on us and it turns out that I am a carrier. So we were really disappointed because that will make having more biological kids difficult. We have a strong chance of having another child with treacher collins. While we are so in love with our beautiful amarie, we don't think we could handle her and a child that could be more severe (complete deafness or trach dependent). The geneticist offered us several options for future pregnancies: an amniocentesis to see if that baby had treacher collins so if we wanted to terminate the pregnancy; to undergo genetic testing on multiple fertilized embryos and then implant the ones without the mutation; or to use an egg donor. Believing that life is precious and that it begins at conception we don't want to go with the first two options. We will probably look into adoption. We are trusting God's plan for our lives and know that He knows exactly who is supposed to be in our family. We are relying on Him every day because there is no way we can do any of this on our own! I am going to have to cut back my hours at work to take care of Amarie so we are excited to see how God provides. Its so funny that after we have seen God's faithfulness to us over and over again that last few months I forget that and still get scared. God says to "test him and see if he will not throw open the floodgates of heaven and pour out so much blessing that you will not have room for it."
Sorry this was so much to read..I had a lot to fill everyone in on! Love, Corin

McKenna loved visiting her cousin Amarie at the hospital. The funny thing about this video is that she had been eating Cheetos before she was rubbing the baby's head so Amarie had an orange head! :) Amarie was very alert and curious.

Amarie did great! We are so relieved that her surgery went well (the doctors are too...they said they were all holding their breath when they were intubating her). She had no complications and was able to come right off of the ventilator...which we were so happy about because that meant we were able to avoid a repeat trip to the ICU. It is much better having the feeding tube right in her belly instead of being taped to her face and going down her nose. Plus its more long term and permanent method (she can't pull it out as easily!). We are at our home away from home, Scottish Rite, until Thursday. Thanks for all of the encouragement! :D

Corin

Yet another surgery

Well Amarie is under the knife once again. She is getting a feeding tube put into her belly today. This procedure only last around 8 minutes so it should be a little less stressful. They will observe her for at least one night, maybe two if there are no unforeseen complications. We are of course nervous and concerned but we trust that God has her in his hands and will take good care of her. Thank you for all your prayers and kind words. We will post another update when she gets out of surgery.

-Jason Orean

Amarie has had several follow up appointments this week that have gone really well. We went to the craniofacial doctor on Tuesday and they took out the distractors (the metal pins sticking out of her head). We are excited about having her little "antenna" out :) We also went to the hematologist this week (Scottish Rite is our home away from home!). They repeated the CT scan of her brain and the blood clot/bleeding is gone!!! We are thanking God for her improvement. She had some blood work done to see if she has a clotting disorder before she gets another surgery in two weeks (to put the feeding tube in her stomach). Poor little thing has been picked on a lot this week between getting her shots, blood work, CT scan, and putting her feeding tube back down after it came out again :( She's going to be a tough cookie! She is so alert now and loves to look around. Such a cutie!

Swallow study (other update is below the pics)

We had the swallow study yesterday and it went pretty well! We were pleasantly surprised :) She aspirated only once (where the liquid went down her airway instead of into her stomach) when they were using a faster flow nipple. Using the slow flow nipple she had improved a lot since the last swallow study. Yay!! She still needs a lot of practice and time to get it down but we are encouraged that there was improvement. We will have a speech therapist (they also work with swallowing) that will be working with her through the Babies Can't Wait program so it will be great to see how much she will improve with lots of practice. Also, the therapist that did her swallow study said that she thinks Amarie will do great with baby food since it is thicker so she will be able to eat that once she gets old enough. She still needs to have the surgery to put in the G tube (tube in her stomach instead of going down her nose) since it will take time for her to work up to get her full feedings from the bottle. The G tube will be more comfortable for her (and it will be farther away from her sneaky hands!). Her surgery (if we can get the ok from the doctors following her blood clot and brain bleed) will be June 22nd and we will probably spend a few days in the hospital..so we hope she tends be a little complicated!! :)

My favorite spot...mom and dad's bed

Pictures (update below the pictures)

With cousin McKenna

Going home from the hospital

Its late...I'll post more pics tomorrow...promise :)

With Grammy

My thinking face

Men from New Covenant Bible Church praying over her in ICU

Update and pics

I'm finally posting more pictures! Sorry it has taken so long:) Amarie is doing really well. At her last doctor's appointment a few weeks ago, she weighed 7 pounds 5 ounces (she was 5#1 oz at birth so she's getting bigger!). She went for a follow up at the craniofacial doctor last week and they took out the stitches in her jaw (she still has her pins in...we thought that they would take those out but they will do that next week). She will also see the hematologist next week and the neurologist the week after that to follow up about the blood clot and brain bleeding. We will also see the ear nose throat doctor...we are very curious about her hearing.
Life has been very crazy the last few weeks! Besides adjusting to the normal newborn stuff, we are adjusting to her tube feedings, medications, equipment, and lots of doctors appointments and paperwork. She gets her feedings through the tube in her nose every three hours. By the time you warm up her milk, set up the pump, let it run for 1 1/2 hours, flush it, and then wash the bottles and syringes, it is time for the next round! I had been pumping but stopped last week. I really struggled with that decision because I really had my heart set on nursing but I just could not keep up with pumping and the tube feedings. I had no time to enjoy Amarie. It has been better to take one thing off of the load but is still disappointing to let go of the hope of breastfeeding. I am trying to focus on what I did accomplish by pumping for 6 weeks in the midst of crazy hospital life and to be encouraged by the freezer full of milk I still have.
She goes for a swallow study this Friday. She is allowed to have a 5mL snack from the bottle everyday but she has trouble with this and gets gagged. If she does not pass her swallow study she will get a tube put into her stomach instead of the one in her nose. While we are not looking forward to another surgery and hospital stay, it will be better to have a more permanent tube since she figured out how to pull her NG tube out! The other day I was up doing one of her night feedings and I thought that I was starting to get the hang of things...then she pulled out her tube and the dog got sick all over the carpet! You just have to laugh.