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.