The Hand of God

Prior to my current full time day job of NICU mom, I spent my days working as an Assistant United States Attorney.  I am so blessed to work with amazing, talented people who have all been a tremendous support during this time in my family's life.  My boss posted the following on his Facebook last night:

"From an obituary today of Doris Betts, a Southern novelist who wrote with a Christian "overlay", as she put it. She once was asked what made her want to be a writer. "Oh, Bible stories, without question," she replied. "It makes you feel that the ordinary is not ordinary." I love that! So true. The "ordinary" is not ordinary at all, you just have to look, and you can see the hand of God everywhere."

That last sentence really struck a cord with me.  The "ordinary" is not ordinary at all, you just have to look, and you can see the hand of God everywhere.  If you walked by Ashton's crib today and just glanced over you would see a tiny baby that looks little, but "ordinary".  She doesn't have a ton of tubes or wires; she doesn't have lots of machines surrounding her crib; she has a mobile to look at and a crib mirror--all very "ordinary" things.  But if you actually stop and look at her you can see the tiny scars from all of her previous lines; the marks on her little body from the testing in days past; the nasal cannula that still helps her breath.  If you look at my "ordinary" baby girl, you can see that the hand of God has shaped her and brought her through so very much in her short life. 

I have been very reluctant to share photos of Ashton in her early days mostly out of fear that people would react poorly to seeing a very sick baby.  I didn't want people to pity her--I wanted people to have an image of the fighter that Cody and I saw when we looked at her.  But after reading my boss' post last night my first thought was "when I look at Ashton ALL I can see is the hand of God" because I spent SO many days looking at her at her sickest.

These pictures are of Ashton at about four hours old.  She looks so "big" and "purple" because she had over a pound of fluid on her little body.  She has the ventilator tube in her throat and IVs in her legs. Her eyes are swollen shut and, because of the swelling, you can not see her neck.

I know many people do not see these pictures as beautiful, but to us they show the hand of God.  A God that was giving us precious minutes with our daughter.  We certainly hoped and prayed for more, but we were so very thankful that she was doing what some doctors said was impossible--surviving.  Today, Ashton looks pretty "ordinary" (aside from the tape mustache on her face).  The swelling in her face is gone, she is no longer purple, and she doesn't have any IVs.  While some may walk by and see and "ordinary" preemie in our NICU pod, I say "the 'ordinary' is not ordinary at all, you just have to look, and you can see the hand of God.'"

Much love,

Brandi

Monday--43 Days Old

Today was a rough day in our pod.  Baby Henry passed away this morning.  He was flown to our hospital Saturday from the hospital he was delivered at.  His mother had not been discharged from that hospital and therefore unable to be with him.  My heart aches for these parents so very much.  The nurses and staff at our hospital are so unbelievably compassionate and go to amazing lengths to assist the parents in any way possible.   Please lift this family up in prayer.  Also, please lift up the nurses, doctors, and staff that worked so very hard to help Baby Henry.

Ashton currently weights 4lbs, 9oz.  She is currently on a 1/2 Liter of oxygen and only requiring about 21%.  She is eating 43ccs of milk every three hours.  She tries to eat every other feeding from a bottle and whatever she doesn't finish she gets through her tube.  Today she ate ALL of her 9:00a.m., 3:00p.m., and 9:00p.m. feedings from her bottle!  She now has a mobile and mirror in her crib and she is staying awake and alert for longer periods of time.  She cries when something hurts, but is very easily consoled.  She loves her pacifier--something Brady never got to experience. 

Cody flew in this weekend and got to spend some quality time with Ashton.  He held her every day and fed her twice on Sunday.  Brady and Cody had to fly back home Sunday night so we were all a little sad knowing that it is going to be a few weeks until we are all together again.

I'll finish updating later...I need to get at least a few hours sleep.

Brandi

Prayer Requests

***Please lift up the doctors and nurses working in our pod today who are working on a very sick baby.  Please pray that God provides baby Henry the strength needed to overcome the obstacles he is facing.  Pray for comfort and peace for his parents--his mother is still in another hospital and unable to be by his side.***

I know an update is WAY overdue, but Cody and Brady were here all weekend and it was a little busy.  It has been a rough couple of days in our pod as other babies have been really struggling.  The NICU is a very stressful place on a "quiet" day, but when babies are struggling it is extremely stressful.  Your heart aches for parents who are facing this unthinkable situation.  You know that it could be your baby struggling at any moment.  I will update on Ashton soon.

Brandi

Just a Few Words...and Pictures

I'm exhausted and too tired to blog.  Ashton had a great day.  She is off the High Flow Nasal Cannula and on the regular nasal cannula which means NO MORE MACHINES!!!!!  She is still working on feeding from the bottle and working on having less and less episodes of dropping her heart rate. 

First bottle feed. She looks so worried!

Happy Face!

Monday

Today is Monday April 16, 2012.

 I am 36 days old.

I weigh 4lbs, 4 ounces.

I eat approximately 1.22 ounces of milk every three hours.

I ate all 36cc of my 3:00pm feeding from a bottle today and I did not have one episode where my heart rate/oxygen dropped.

I got really mad at mommy today when she changed my diaper and a let out a LOUD cry.  She was very shocked that I could make such a loud noise. 

I got visits from lots of nurses today who took care of me when I was really sick.  They were all so happy to see how wonderful I'm doing and how great I look.

Dr. Kahn was on call this past weekend and said, "This little girl (me) amazes me more and more."

My mommy tells me how amazing and wonderful I am everyday.

Weekend Fun!

Sweet pea has had an adventure this weekend.  I forgot the cord to my camera so I'll have to add pictures later.

Ashton got to attempt eating from a bottle for the first time yesterday!  Preemies do not have the muscle tone established yet to successfully suck 100% of the time.  Also, the suck/swallow/breath pattern doesn't come easy for them.  Knowing this, doctors introduce the bottle very slowly to preemies.  Ashton gets 30 minutes to try to feed from the bottle--once during each shift--for a total of twice a day.  There are many things that will cause the nurses to stop her attempt--too many episodes where she forgets to breath; she is asleep and not interested at all; or she is breathing too fast--just to name a few. After 30 minutes Ashton is using more energy trying to eat than she is gaining from the nutritional value of the milk, so she gets the rest delivered to her through her NG tube.

Ashton is currently eating 36ml every three hours.  Yesterday (4/14) on her first attempt she ate 2ml and on her second attempt she ate 9ml.  Today (4/15) she ate 15ml on her first attempt and 32ml on her second attempt.  That means that she only had 4ml left in her bottle during her last attempt.  I know this doesn't sound like a big deal -- Ashton ate from a bottle -- but remember folks, she is only 33 weeks, 6 days gestation as of today.  She should still be hanging out inside mommy for another 6 weeks!

Brady came over Saturday (4/14) from my mom and dad's and got to see Ashton again.  After we visited Ashton, Brady and I went on a date.  I let him pick the restaurant, so we ate at the Waffle House!  He LOVED it and I'm so very happy that we don't have them in Midland. (At least, I don't think we have a Waffle House.) After we finished our gourmet meal, we went back to Uncle Robert's and watched "We Bought a Zoo."  The movie was very cute and Brady was very snugly.  My parents, Brady, and Uncle Robert picked me up from the hospital and we went to lunch together at Jus' Mac -- a restaurant that serves various different styles of macaroni and cheese.  Now Ashton and I are just hanging out listening to all the buzzing and beeping of the monitors in her pod. 

Every good thing bestowed and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation, or shifting shadow. James 1:17

I'm a Feeder/Grower Now!

Ashton is almost four pounds today and is having a pretty good day overall.  We still have the episodes, but she recovers on her own for the most part.  They went down on the flow on her nasal cannula to 1.5 and she has tolerated the change well so far.  She is currently around 24% oxygen and saturating near 100%.  When she reaches 1.0 flow on the "High Flow" cannula and is close to 21% oxygen she will move to the "regular" nasal cannula and then off oxygen completely!  Thus, Ashton has graduated to Feeder/Grower status in the NICU.  Essentially that means she is, for the most part, in the NICU to learn to eat from a bottle and gain weight and those things just take time.  She is sucking on a pacifier while being feed through her tube in hopes that her little body starts associating the sucking with the filling of her tummy.  She will be introduced to the bottle very slowly and as she gets the hang of it she will get more and more bottle feedings.  Please continue to pray that she has less episodes of not breathing and that she remains free from infection.  We appreciate your prayers and support more than words could ever express.

Brandi

Overdue Update

I took a mini-break from blogging while Cody and Brady were here visiting Ashton.  I was busy soaking up every second we got to spend together as a family which didn't leave much time for blogging.  It did leave plenty of time for loving and laughing with my handsome men and beautiful girl.  (I will do a post about the adventures we had over Easter...hopefully tomorrow, but no promises.)

So, I posted the pictures below earlier to show you all a sneak peak of what Ashton has been doing.

She has been regulating her temperature well and actually was getting hot in her incubator so she graduated to her very own NICU crib.  They only come in blue so we had to make sure we had her pretty pink sheets.  The big green "hand" in the picture is a Zaky.  The Zaky is designed to imitate the look and feel of a parent's hand and forearm. It weighs approximately 1.2 pounds, but you can shift the filling to provide as much or as little weight.  Ashton LOVES this thing and seems to rest much better with it than she does without it.

Ashton had a follow-up Echocardiogram yesterday and we got the results today -- MILD decreased function and no mention of PDA.  This is very good news given that her first echocardiogram showed severe decreased function and the PDA has closed on its own without surgical intervention.  The cardiologists recommend keeping her on the one heart medication that helps keep her heart from going into the fast beating rythmn (SVT) until she is 6 months old and one more echocardiogram before she is discharged from the NICU and NOTHING ELSE.  This is a HUGE praise!

Ashton weighed into tonight at 3lbs, 15 ounces...4 ounces heavier than she was at birth.  She is currently being fed 34 ml (1.15 US fluid ounces) of fortified milk every three hours and is tolerating it like a champ.  Each feeding lasts an hour so she spends eight hours a day being fed!  Although she is still fed through her tube, she has started sucking on a pacifier while she is being fed.  Hopefully this will help her associate sucking with her tummy getting food.

She is still having the episodes where she forgets to breath, but she is learning to recover more on her own which is certainly a step in the right direction.  Ashton is becoming more alert and opening her eyes.  She also is getting to wear lots of cute clothes and hats!

  Tomorrow is her one month birthday, so make sure to check the blog for her one month picture!

Prayer requests continue to be that Ashton have less "episodes" of forgetting to breath, that she avoid infection of any sort, and that she continues to grow and thrive.  Also, please continue to lift up in prayer Thatcher Caleb and his parents, Eric and Whitney.   Thatcher is an amazing little boy who shows his will and determination daily.

Much love,
Brandi

Moving On Up!

I will post a detailed post later tonight updating you all on Ashton's condition, but for now I will just post pictures of Ashton in her "new" crib.

Perfect Easter

Remembering to trust God with a life as fragile as Ashton's is my daily goal. Seems silly when I think about it. The same God who laid his hands upon the lepers, the outcasts, and the lame places his hands upon my heart and reminds me daily that I am not alone. 

Easter morning was spent this year without a church service or family lunch; without Easter clothes or fancy shoes.

Easter morning was spent this year with a miracle daughter and handsome healthy boy; with a God loving daddy holding his daughter for the first time.

Easter afternoon was spent this year without naps on our parents' couch; without snacking on our child's Easter candy.

Easter afternoon was spent hiding eggs in at a school playground close to the Texas Medical Center; with a big brother seeing his little sister for the second time in her four week old life.

Easter was perfect this year and just as God intended.

Happy Easter

Sorry for the lack of updates, but it has been a busy couple days. Ashton has been stable on her nasal cannila since Thursday and is having less episodes. Cody and Brady arrived in Houston Friday night. Cody is enjoying getting to see his baby girl and Brady is getting spoiled rotten. Hope everyone has an amazing Easter and remembers what this day is really about. Brandi

Happy Day in Giraffe Pod A

One of Ashton's "pod mates" Aiden got to go home today!  He is being adopted by his Aunt and Uncle and they are so very happy to have him join their home.  Although they are high school sweethearts and have been married for ten years they did not have any children...until now!  Baby Aiden is doing great and is going home with out monitors, tubes, or meds.  This adoption process will be a long one for them as CPS is involved, but I see how much love they already have for this sweet boy and I know they will jump through all of the hoops a CPS adoption involves.  (Aiden's mom and I have spent alot of time talking during our NICU stay.) Please remember the Grant family in your prayers over the next months as they enjoy family life with a newborn and go through the adoption process. 

Much love,
Brandi

PS  Ashton is having a much better day with only two episodes requiring stimulation since 7:00a.m.  Keep the prayers coming for a sweet little girl!

Thursday Morning

Not much new to report here other than Ashton is getting a visit from Daddy and Brady tomorrow!!!!  I am really missing both of them and can't wait to see them.  Ashton is still having the "episodes", but they don't appear to be as frequent and she is recovering on her own a little more often.  The medication she is on for her heart can cause these "episodes" as a side effect, but obviously we can't stop the heart medicine.  The plan for today is to watch her really closely and just hope that she has fewer and fewer of them over the days to come.  She is still on the nasal cannula and they haven't made any changes to the amount of flow of oxygen she is receiving.  Because so many have asked I've included a photo from yesterday of us.  (Ignore the very tired momma and look how awake Ashton was!)

Yesterday's (4/4) Update that I Forgot to Post

Ashton had a rough afternoon/night/morning with way to many "episodes".  By 5:00p.m. yesterday mommy was getting very weary and wore out from watching the monitors all day long.  As I prayed to God this morning I got an overwhelming peace.  It wasn't a "don't worry everything is going to be just fine" feeling, but it was a "you are not alone" feeling.  Guys, this is the hardest thing I've ever done in my life and there are times when I feel like I'm just going through the motions.  When people tell me "stay strong for your little girl" and "make sure you get plenty of rest" I want to say "how do you rest when your baby is in the NICU" and "I'm trying to be strong, but I'm scared", but I don't because I know people mean well and they don't understand. 

So on day 24 we are taking it hour by hour.  The last four hours there have been less "episodes", but she is still having them.  The doctors increased one of her meds (caffiene) at 9:00a.m. today and if the episodes don't slow down she will go back to C-Pap and we will see if that helps.  Either way, we know our God is good and he will see us through this storm.  Maybe not the way or on the path that we desire, but according to his plan.

Brandi

Rocky Morning

Ashton had a good night overall and they reduced her oxygen liters this morning.  She hasn't tolerated this change well at all.  She is having lots of episodes where her heart rate and oxygen levels are dropping and she is not able to correct it on her own.  They thought changing the time over which she received her feeding might help, but it hasn't made a difference so far.  She is still having the episodes.  Obviously, I'm extremely worried and would appreciate all of the prayers you all could send our way. 

Specific Prayer Requests:

1.) Few episodes in which her heart rate/oxygen level drop.
2.) Doctor's decide what changes to make to slow the episodes down.
3.) Ashton's body stays free of infection.

I'll update more as things develop.

Brandi

Hiccups, Smiles, and a Few Tears

Today was an uneventful day for Ashton.  The doctors did not make any changes to her nasal cannula settings and increased in milk intake to an ounce every three hours.  She will stay at that amount of milk until she puts weight on and they "weight adjust" her amount of milk.  She is still having episodes where she forgets to breath and her heart rate/oxygen saturation level drops, but once she is "reminded" she gets back to work.  She is still wearing clothes and learning to regulate her own temperature.  Ashton got the hiccups for about ten minutes tonight and she was not happy!  She finally stopped and looked at me while I was holding her and smiled.  Obviously, I know it was a "gas" smile, but it was perfect in my eyes. 

Ms. Patsy and Melissa were Ashton's nurses today and WE LOVE THEM.  They were Ashton's nurses the first couple of days after Cody had to go back to Midland and were very sweet and took great care of Ashton and me.  When I came in this morning both of them looked at me and told be how amazing Ashton looked compared to when they took care of her twelve days ago. 

We also got a couple of visits tonight from the doctor and nurse who took care of Ashton during her first three nights.  Rhiannon and Dr. Jones took care of Ashton during her most critical, sickest nights.  Both stopped by at different times to look and see how she was doing.  Both were so amazing to Ashton, Cody, and I during the roughest times and we will be forever grateful to them.  Dr. Jones called Ashton a "miracle baby" who looks "amazing" tonight.  Of course, he also said she has a long road ahead of her, but he is amazed how she is doing.  Tears started to flow as I thought of our drive to Houston Thursday, March 8th, when Cody and I were praying and requesting prayers for a miracle for our sweet girl.  We were told medical science said a miracle was Ashton's only chance and I am in awe of looking into her sweet face everyday.

Bye, Bye Elephant Nose

Bye, Bye C-Pap.  Hello, Nasal Cannula!

Ashton is three weeks old today and she celebrated by saying goodbye to her C-Pap for now.  She is now on a nasal cannula which delivers oxygen to her.  This is a big deal because now her little lungs are 100% responsible for delivering oxygen to her body.  She no longer has any pressure support forcing her lungs open.  She tolerated the change today, but she is struggling a little bit when she is on her back or sides.  She struggles to keep her heart rate and respiration rate up, but fights through most of the episodes on her own.  I worry about her wearing herself out, but I trust in the knowledge of the doctors.  If necessary, she will go back onto the C-Pap, but we are praying she continues to beat the odds!

It is still too hard for me to talk about in detail, but I'm praising God for the miracle journey Ashton is on right now.  This little girl has taught me more about faith in 21 days than anyone/anything has in my 32 years on earth.  We do not know what the future holds for our daughter and, despite how wonderful she looks, we know we are not "out of the woods" yet.  We also know that she is here fighting this battle despite her "100% fatal" condition.  Ashton has a purpose her on this earth and it is my job as her momma to give her every opportunity to show her purpose to others.

Please continue to pray for Ashton's ability to breath on her own with the nasal cannula and that her little body stays free of infection. 

Much love!

Brandi