Sunday, January 31, 2010

There really wasn't a big change today. The Occupational Therapist did come and feed her at her 11 o'clock meal. Bentley took all of her 36mL bottle for her. We were the two proudest parents in Children's Hospital at that moment. She only takes about 1/2 of her day feedings. I think she has her nights and days mixed up because she sleeps all day and doesn't do as well during her feedings. Then at night she's awake more and does great during her feedings. She is catching on though.

Saturday, January 30, 2010

Bentley is still working on eating. She is only taking on average 20 ml each feeding. I noticed an improvement though. She is more eager to take her bottle every 3 hours. An Occupational Therapist is going to meet her Monday. They will critique her eating behavior and hopefully help us figure out a plan.
Shawn and I braved the TERRIBLE road conditions to go see her this morning. It was worth every second of sheer terror I had while riding on I630 to see her beautiful face.

Friday, January 29, 2010

Bentley is doing really great today. We got to spend an hour with her for her 11 o'clock feeding but then had to get back to the hotel before we got iced in. The doctors upped her feedings to 40ml. She is taking on average 20-30 of it. She is going to get better every day. She just needed a little practice.

Thursday, January 28, 2010

We just practiced eating today. I know that sounds funny but it is really not a laughing matter. It is REALLY HARD for some babies to learn how to eat. Everyone at Children's is telling us that she will get it, just like a lightbulb going off. The doctors are thinking about taking her off of her IV nutrition. That will possibly encourage her to eat. They compared this whole "eating thing" to making a free throw. It looks easy but in all actuality it takes skill and knowing the proper steps. Again, please pray for our girl to get hungry:)
Besides eating issues, she is doing GREAT!! She spent today practicing facial expressions and looking around at this big huge world. It is so cute. She practiced making smiles for 10 minutes. I caught her in the act in this picture. She also loves listening to her classical CD and her orange pacifier. Now if we could just get her to suck the bottle like she does her pacifier.

Wednesday, January 27, 2010

Bentley is learning how to eat. It is not easy. She is only taking 10ml at a feeding. (GOAL is 60ml) Our darling lost her natural tendency to swallow, latch, etc,. because of her separated esophagus/fistula. She has 20 minutes every three hours to eat. She cannot eat in between meals. I understand that they have to have a standard time limit because of how many babies they have but it is really hard to watch her fuss because she is hungry. It will still be about two weeks till we can come home. Please keep her in your prayers.

Monday, January 25, 2010

Ms. Bentley got her NG tube removed today. She is still not up to par on her bottle/milk intake and the Neonatologist believes that the 8FR feeding tube might be occluding her esophagus. 8FR is HUGE for Ms. Bentley's small throat. Now the ball is really in her court. Hopefully she will take the bottles better. If not, they might have to do a barium swallow study and have a smaller feeding tube re-inserted. So, in short, today was filled with lots of possibilities for tomorow. I know my baby girl is still in a lot of pain. We will be patient and give her all the time in the world that she needs to heal. Please keep her in your prayers.

Sunday, January 24, 2010

The good news for the day is that Bentley's aortic arch is fine. The Radiologist said that it was a glitch in the system that made the image appear inaccurate. Bentley just rested today. She needed the time to heal. She is up to 21 ml thru her feeding tube:) Other than that all is quiet in the NICU.

Saturday, January 23, 2010

Just a little bit of a setback today. Bentley is not swallowing. So, she is unable to take a bottle. Our little darlin is still recovering from MAJOR throat surgery. I'm positive she has the worst sore throat in history. She is getting milk thru her NG tube. We worked with her for a few hours on how to take a pacifier. I think once she has that down maybe it will make taking a bottle easier. She has a really hard time controlling her jaw and tongue. I would too if I had been in a coma for 7 days. The docs want to take a break for a few days and then start back on bottle feeds next week. We will just go at her pace. There is no hurry. We just want her to be happy, healthy, and doctor approved.
Her neonatologist, Dr.Arrington, showed us her 3D MRA images of her heart. I'm not a radiologist or anything but I noticed she has at least a 50% narrowing of her aortic arch. SOoo, I've requested to speak to a Radiologist personally and have them explain the images better. Even Dr.Arrington agreed that it looked stenosed.
Other than that, our little girl is more alert and definately more fussy. However, I don't think you will ever meet two other parents more eager to hear their baby cry. It is music to our ears.

Friday, January 22, 2010

Bentley's esophagram did not show a leak!!!!! The surgeon, Dr.Kellar, is so impressed with Ms.Bentley's progress. Her chest tube was also removed. She will keep her NG tube for a few more days as we teach her to bottle feed.
Bentley had her first meal today. She is going to start at 7ml feeds, 8 times a day. The neonatologist informed us that Bentley will not be released until she can eat 60ml feeds, also 8 times a day. At this point that seems like soooo much. However, my little girl gulped down her first bottle like she had been eating since day one. Dr.Lyle said it is usually a 2-3 week process. However, we are hopeful that she will catch up to speed faster than that
She has progressed faster than enyone had expected. She has impressed us with her will, strength, and quickness to heal. God has blessed our little girl.

Thursday, January 21, 2010

Today was a big day!! I got to hold my sweet angel today for the first time. We just looked into each others eyes and tried to figure one another out. Her cry is so hoarse. She also snored. The nurse said that was normal coming off of the ventilator. It was so hard to give her back. It's even harder to walk away at the end of the day and leave her there. I just cannot wait till we can take her home. I'll probably hold her forever.
Bentley had her art line removed. Also, she is now only on a nasal cannula for oxygen. NO more ventilator!!! Tomorrow is a big day too. She has an esophagram sometime. The surgeon will decide then whether or not to leave in the chest tube. And hopefully she can get some milk thru her NG tube.
Mommy and Daddy are VERY proud of their little girl:)

Thursday, January 21

Today at about 11:45 A.M. Bentley was extubated!!! We are so happy. She threw a fit....and it was adorable. She still has a feeding tube, chest tube, art line, and picc line. Bentley's big esophagram is tomorrow. If that goes well she can have her first meal (thru the NG tube).
There is a Care Account set up at Arvest Bank under her name, Bentley Ramson, for donations towards her hospital bills. You can donate at any Arvest. Any assistance is appreciated. We are grateful for every penny spent at Children's. This place is truly amazing. It saved our daughter's life:)

Good news!!!

Bentley's MRA of her heart and MRI of her brain show no immediate problems:) She does not have a complete vascular ring, which is excellent news!!! She will still have to follow up with a cardiologist every so often for the rest of her life, but that is OK with us. They will keep an eye on her missing pulmonary vein, PFO, and VSD.
She is still intubated. They are taking chest x-rays twice a day to watch the build-up of fluid/air in her pleural cavity. The fluid/air in her chest is indicative that her trachea might have a leak. We should hear this afternoon whether or not she does have the suspected leak.
I'm so proud of her. She's much more active today than in previous days. They are weaning her off of the morphine and are hopeful to extubate soon. Well, I just had to update this and tell you guys the good news about her MRI's. We are sooooo happy and proud of her:) I've got to get back to my angel though:)

Tuesday, January 19, 2010

Bentley had her MRI and MRA done today to look at her brain and heart. We will hopefully have the results tomorrow. Sometimes, it takes a couple of days to get results. Her chest tube had to be turned on because she has a little build up of fluid seen on a chest x-ray. The surgeon is so sweet and has been by twice in the past 4 hours to assure us that all is well and she is closely watching Bentley's x-rays and the fluid build up. Tomorrow, hopefully, Bentley can be extubated. When she gets off of the ventilator I think she will heal faster.
She is so beautiful. She is our precious sleeping beauty. We are by her side all day. The nurses don't seem to mind. The night nurses even read her good-night stories.
Her cardiologist also came by today. He is really nice. He re-assured us that Bentley's heart is ok. Daddy Shawn told her that her unique anatomy just gives her super powers:)

Monday, January 18, 2010

No new developments really for today. Bentley will hopefully have an MRA of her heart and an MRI of her brain tomorrow. Her brain is a little swollen so the docs want to make sure that there is nothing to worry about there. She had one of her IVs and her foley catheter removed. I never thought I'd be so happy to see a baby's wet diaper:) She is sleeping soundly still but whenever her medicine starts wearing off I get to see a glimpse of my daughter's spirit. She'll shake her little head and wave her hand. It's like she's trying to say, "It's OK Mom and Dad, I'll be alright!"

Sunday, January 17, 2010

We are excited about the possibility of Ms.Bentley being extubated tomorrow. She is ready to breathe on her own.








Bentley has been surrounded by family and friends.

Sunday

Today has been a quite day in NICU at Children's Hospital. Bentley sleeps soundly with the help of morphine. Her little body is recovering well from surgery. Next Friday is a very big day for us. She is scheduled to have a barium swallow to check out her esophagus. If all is well they will remove the chest tube and begin to have liquids by mouth. This is awesome considering the only thing that she has had by mouth is barium.
Tomorrow, she will have a MRI to see what's going on with all of her very unique anatomy. They will key in on her aortic arch and determine what type of vascular ring she has. We are anxious to find out the results.
I can't wait to hear my baby girl cry. I can't wait to see her eyes open. I can't wait to hold her. It's hard to be a new mother and not have done these very basic things. However, I'll thank God for every cry, hiccup, and spit up in our near future. Shawn and I are going to entertain Bentley now with a reading from the Velveteen Rabbit:) Love you guys. Keep praying for our angel!!!

Bentley Paige Ramson made her appearance into this world on Wednesday, January 13th, at 11:48 pm. She weighed 6 lbs. exactly and 19 inches long. Her wonderful nurse noticed that "something wasn't right." Bentley appeared BEAUTIFUL and healthy but she needed contstant suction from her mouth and nostrils. The staff attempted to put a suction catheter down her throat and hit a blockage of some sort. A barium swallow indicated that Bentley had a separated esophagus. She had a top piece and a bottom piece and a 1.25" gap in between the two. Also, the bottom section of her esophagus had created a fistula to her trachea. At 6 am on Thursday, January 14, the doctor informed us that Bentley would be flown to Children's Hospital in Little Rock. Shawn and her Grammy, Jacque, went to Children's with her. I stayed in Fayetteville. Bentley underwent surgery on Friday to repair her esophagus and disconnect the fistula. Surgery was successful.
Today is Saturday. We are all here together. I arrived in Little Rock this morning and am so relieved to get to kiss my sweet baby. She is heavily sedated and will be or a few days while her body recovers from major operation.
In the mean while, many tests have been ran on Ms.Bentley. Usually, a malformation like hers is indicative of other issues. She has edema of her brain and kidneys. Also, her anatomy is very unique. She has two superior vena cava, and only one pulmonary vein on her right lung. She also has a ventricular septal defect and a patent foramen ovale. All of these issues are MINOR.
There is another issue that has us concerned however. Bentley has a "vascular ring." This will more than likely require surgery. Tomorrow, they will perform a MRI and be able to better explain what's going on. Right now, I'm exhausted and don't have to much more information to give everyone. We are so grateful and thankful for everyone's thoughts, prayers, and support through this very difficult time. We plan to be a Children's for a few weeks. I'll keep this updated almost every day with new pictures and information.

Bentley is the greatest thing that Shawn and I have ever done. We literally created an angel.


She is amazing and I can't wait for you to meet her:)

We are getting ready for Ms.Bentley Paige Ramson to arrive. My labor began with induction around 6 pm Tuesday night. I labored all night and all of Wednesday. Eleven o'clock Wednesday night, 29 hours later, Dr.Birch decided we needed to have a c-section.