WAY overdue update!

I know it has been way too long since I've updated the blog, but I've been a little busy with Miss Priss and Mr. Man (Brady).  Before I get into the update how about a few pictures...

Happy Memorial Day!  I know I look a little scared in this photo, but don't worry I am okay.  Mommy just forgot to turn the flash off on her phone and it was really bright!

My mommy has this really bad habit of taking pictures of me right after I eat.  I keep telling her that I'm really sleepy, but she keeps saying I'm really cute. 

I had my first photo session with Amanda McNeely last week.  That lady is SO talented!  She took so many pictures of me (without the scary flash) and I didn't even cry once.  She wanted to get some pictures of me sleeping, but I was just too awake!  I haven't seen all of the pictures, just the quick previews she sent my mom, but I'm pretty sure my mommy is about to spend all of daddy's money on my portfolio!

YUCK!!!  I had no idea mommy and daddy were kissing!  Bubba obviously saw them and couldn't contain himself.  I sure do love my Bubba...he is a GREAT singer!

Now for the update.

Ashton is doing very well at home.  We are still on the oxygen, but only 1/16 of a liter when sleeping.  I think she is really close to getting rid of it completely and I know she is ready for it to be gone.  She has scratched her little nose more than once trying to get it off her face.  We saw the cardiologist in Lubbock a few weeks ago and had yet another Echo.  No real changes to report.  He didn't weight adjust her Propranolol (heart medicine) and she has been doing fine-so that is good news.  Her heart function isn't perfect, but her heart is functioning well enough that we are still in wait and see mode.  Speaking of weight.  Miss Priss now weighs 8lbs, 2 oz!  She has baby fat and little leg rolls!  She still doesn't cry much and sometimes I have to wake her for feedings, but she is definitely getting more alert and staying awake for longer periods of time.  She has started to fuss when she wants her diaper changed or just wants out of her swing or seat.  We are trying to work with her on more tummy time which she is perfectly fine with skipping completely.  Unfortunately, the back of her head is getting a little bit flat, so she is going to have to start spending more time on her belly.  Probably the biggest news is that we went last week for our second attempt at a hearing screen.  As you may remember, Ashton did not pass her hearing screens in the NICU in Houston.  Well, last Wednesday we tested her again and her left ear PASSED with minimal, IF ANY, hearing loss!  That is such a huge PRAISE!  They were not able to get her right ear drum to move so we will retest her in a month.  It could be fluid in her ear, that her ear canals are still REALLY small and the probe wasn't able to accurately measure, or that the bones were not formed correctly.  We should know more in a month.  We also will be getting her EI assessment this week to see what, if anything, they recommend on the OT/PT front.

We are in the process of attempting to find someone to care for Ashton as I plan to return to work.  Please be in prayer that we will find the right person to care for our sweet girl.  Obviously daycare is not an option and she still can't be around other sweet darlings who may have sniffles or sneezes.  Midland's economy makes it very difficult to find someone qualified that is willing to care for an infant with a few extra needs.  If you know of anyone that may be a fit for this special job, PLEASE email or call me!

Mr. Man is doing great and is an amazing big brother.  If Miss Priss is fussing he will walk over and sing (usually Father Abraham or a mixture of every nursery rhyme he knows) to her.  He is also the best pacifier finder/giver I've ever seen.  He helps me when we go to Lubbock for doctor's appointments and has just been amazing!  For Father's Day weekend, he and Cody went to the deer lease to work and "hunt".  I know some of you are not fond of hunting, so skip the last picture if you don't want to see Mr. Man's first confirmed kill.  He is so proud of himself and had an amazing day with his daddy. 

We love and appreciate you all so very much!  I promise I will try to update more often.  My mom has been coming every other weekend from Houston to help out which has been a life saver.  Speaking of, I better go remind her she can't hold Miss Priss ALL day long today!

Much love,

Brandi

We are TRYING to find a routine

This will be a short post since I'm so tired I can't see straight, but here are the highlights: We made it home around 9:00 Monday night. Ashton did great traveling in her car seat and we didn't have any oxygen equipment issues. Ashton had a hard time eating Monday night mostly because she was exhausted from the traveling. She stayed alert and awake more than ever before and wore herself out. Tuesday was spent unpacking, dealing with the home health nightmare, and trying to get Ashton to wake up and eat. Overall she did much better, but she was only awake every other feed. Today we had our first pediatrician about with Dr. Motheral in Lubbock. She was amazing and obviously had spent time looking at Ashton's history and records. Brady is back home with us and doing okay overall. He is very clingy and "worried baby sister is going to get sick.". I'm trying to spend as much time with him as possible which means I'm with a kiddo pretty much 24 hours a day since I'm sleeping in Ashton's room. That's the highlights. Lots more to add and talk about, but imm too tired and Ashton eats again in 2.5 hours! Brandi

Ashton has been discharged!!!

We are leaving Houston and headed home. I'll update facebook along they way and post a detailed update here when the dust settles. Prayers for safe travel are much appreciated. Cody, Brandi, Brady, & Ashton

We Have A Date!

We got A TON of news today. First, we got the results of Ashton's MRI results today and they were not medically perfect. There is nothing to be done about it right now and just something we will watch and evaluate closely as she grows. No matter what she faces in the future, she has a daddy, mommy, and big brother who think she is perfect! Next, they slightly altered her heart medication dosage to adjust for her weight gain. Finally, they gave us a discharged date!!!! As long as nothing changes, we should be checking out of the NICU Monday, May 14th! The logistics of taking a preemie who needs oxygen home nine hours away isn't an easy task, but it is one we are definitely willing to under take. Thank you so much for your love, prayers, and support and please keep them coming! Brandi

Happy Birthday Big Brother!

Today is big brother's 5th Birthday! We are so sad we aren't there to celebrate with him, but hope to be home really soon. Ashton had her hearing screen today. Unfortuately she didn't pass in either ear. They will retest her before we go and most likely refer us to an ENT/audiology doctor. The transport team of nurses just took her to get her MRI to make sure she doesn't have any other issues that we aren't yet aware of. All preemies here get an MRI before discharge or at 38 weeks. Please pray we get normal MRI results and that Ashton passes her next hearing screen. Even though we have been through so much, I feel like these last couple of days have really tested me. Please pray for peace and comfort for our family as we prepare to come home--hopefully very soon. Love, Brandi

36 Weeks, 1 Day a/k/a 51 Days

So here in the NICU they talk about Ashton's age in weeks gestation.  So even though she is 51 days old, they call her "36 and 1" meaning I should be 36 weeks, 1 day pregnant.  People ask me how old she is and I have to pause because in my sleep deprived state I can't remember which one I'm suppose to tell them!

Ashton has had a bit of an issue the past few days with getting cold.  Our pod has been very cold and since she is still really little with very little body fat it is hard for her to maintain her temperature.  When she is cold she uses too much energy staying warm and loses weight. They have warmed up the pod and kept her really swaddled which has helped her regain the weight she lost.  Ashton is still on the nasal cannula at a REALLY low percentage of oxygen.  We tried removing it and Ashton didn't tolerate it well.  We will try to turn it off again in a few days and see how she does.

Ashton finished three of her four feedings from her bottle today--the fourth they finished feeding through her tube.  She is working really hard at getting to a point where she is finishing all eight of her bottles, but sometimes she is just too sleepy.  After all, her "birth"day wasn't suppose to be here for four more weeks!  The picture below is her "milk coma" face which she makes after finishing her bottle!

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

The Friday/Saturday Adventure

Sorry for the very late update.  I have been exhausted when I get home and the time at the hospital is starting to get to me a little bit because I'm so tired, but if Ashton is fighting so hard her momma WILL NOT complain!

Friday was suppose to be an uneventful day, but Miss Prissy had other plans.  She was doing well on her C-Pap settings, so Dr. Kahn decided to reduce her pressure setting on her machine.  SHE DID GREAT with her new settings.  She also was doing well with her temperature regulation and is still getting to wear clothes.

Ashton also got a visit from some very dear friends from our old hometown, Levelland, Friday.  They were in town for a wedding and were so sweet to stop by and see sweet pea.  They also brought cards and gifts from lots of friends back in Levelland.  We are so blessed to have so many people sending Ashton and our family love and prayers.  I know I say thank you every night, but it never seems like a big enough way to express my gratitude.  You guys are amazing.

Friday night the picc line finally came out and Ashton got to say goodbye (hopefully forever) to one more of her NICU accessories.  She didn't enjoy having the line taken out, but she did just fine after she settled down a bit.  She had a calm night and her oxygen level stayed stable around 25%.

Saturday morning was a little rough for me because I knew I was missing this handsome boy's first T-Ball game. 

Brady has been a trooper throughout this journey, but as his mommy I was sad to realize I was missing a "first" for the first time.  We had been a family of three for almost five years before Ashton's arrival 20 days ago and Brady has never had an activity without me there to take a picture, cheer him on, and just enjoy seeing my little man grow.  Lucky for me, Ashton decided she knew what mommy needed and was a trooper this morning.  So much so that Dr. Kahn decided to reduce her C-Pap pressure AGAIN!  She has been been at a pressure setting of four all day as is hanging in there.  I can tell that it is harder for her because she has had more episodes where she gets tired or really sleepy and forgets to breath, but she is a fighter and I pray that she will keep getting stronger and have less and less episodes. 

Specific prayer requests:

1.)  Ashton continues to get stronger in supporting her own breathing and has less episodes.
2.)  She continues to do well with her feedings and starts gaining weight.
3.)  Her little body stays free from infection.

Much love!
Brandi

Quick Update

Ashton has had a good day.  Her doctor was happy with her levels this morning, so he decided to turned her C-Pap pressure setting down to 5. She has tolerated the reduced pressure well and is actually getting less than that when she sleeps with her mouth open.  She also is doing very well regulating her own temperature and his still getting to wear clothes. I've got to run pick her up a few things, get them washed so she doesn't run out of clean things to wear tonight, and get back to the hospital to spend some more time with my sweet pea.  I'll try to do a full update of today's events later tonight.

Much Love!
Brandi

2.5 Days and Counting

Sorry for the late update, but today was a very busy day.  Ashton had a good night overall Wednesday. She had two episodes where she forgot to breath and her heart rate dropped, but she recovered from both of those on her own without stimulation from the nurses.  It isn't good that she is having these episodes, but it IS good that she recovered on her own.  Also, it isn't unexpected for her to have these episodes, we just want them to be fewer and fewer as she grows.

I had my follow-up OB appointment at 9:15 this morning and knew it was very possible that I would miss rounds today.  I got to the hospital super early to spend some early time with my girl and make sure I talked to as many of the nurses, nurse practitioners, dietitians, etc. on Ashton's team I saw before I had to leave.  I went to my appointment and made it back to Ashton around 10:30 (the doctor's office building is connected to the hospital via sky bridge and is only a five minute walk from the NICU) to find out that the doctor's were running later today and had not rounded yet.  I was ecstatic!  Something about getting to hear directly from the team what they think and want to do for the day is much easier than hearing it through a third party.  Don't get me wrong, the nurses here are AMAZING, but I prefer to be there when the doctor comes by.  The doctor didn't make any changes today.  She did well enough with her feedings that they are discontinuing her IV feedings.  Her IVs will run out tonight and they will remove her picc line tonight or in the morning.  He also told me that it will be slow going getting her off of the C-Pap.  She has to be able to get the pressure setting down to 4 and maintain her oxygen requirements below 25%.  She is very dependant on the C-Pap help right now, so we are looking at a minimum of a couple of weeks to get her to a nasal cannula.  That being said, Ashton has surprised us all more than once so the timeline may change depending on how she is doing.

After rounds I heated up my soup in the Ronald McDonald House that is on the same floor as the NICU and ate a quick lunch so that I could start holding sweet pea around 1:45.  While holding baby girl I got a VERY welcome visit from a good friend from back home in Midland.  We sat and talked while I held baby girl for over an hour.  She brought a bag of sweet gifts from friends back home which I will definitely use over our stay here in the NICU.  It felt so good to just sit and talk to someone that I've known more than 18 days!  I held Ashton until 6:00p.m. when she really needed her diaper changed and it was getting close to time for shift change. While I was holding Ashton she got the hiccups for the first time.  It was so cute, but boy did she get mad!  Her voice is definitely getting stronger because she cried loud enough for her nurse to hear. 

After shift change Ashton's night nurse did her assessment and got Ashton all settled in for the night.  She also said that Ashton is doing well enough to wear clothes!  Obviously we don't have any clothes that fit our 3 lb. baby girl, but I am sure her Nana will be purchasing some ASAP.

We are praying for a smooth night tonight and that she doesn't have any episodes.  We also continue to praise God for all of the things Ashton has accomplished!

Much Love!
Brandi

30 Hours

Sweet pea has been on C-Pap for right at 30 hours and SHE IS HOLDING HER OWN!!!  She has had a few episodes where she gets upset and her oxygen and heart rate levels drop, but she has managed to climb back up (with the nurse's help, of course.)  What does that all mean?  The short answer--Ashton has been taking breaths on her own for over a day now.  She still needs the pressure support of the c-pap and is on about 24% oxygen.  (Just for reference, room air that we all breath is 21% oxygen.)  During rounds this morning,  Dr. Kahn (who we LOVE and I will blog about more later) said she has lasted longer and done better on the c-pap than he ever expected her to.  Our little fighter continues to defy the odds and we KNOW who is in control of how she is doing on the C-Pap and every step of this journey.  There is no way we could take on this journey with Ashton without knowing that fact.  I appreciate  everyone who is sending encouragement and love our way.  Your reminders of how much we are loved and how many people are praying with us for our sweet girl is overwhelming!

If everything goes well tonight, tomorrow will be Ashton's last day of TPN (nutrition through the IV) and she will be eating 100% milk.  The only medication she will be on will be her heart medicine which she takes orally.  This is a HUGE deal because it means her picc line will be coming out tomorrow and she will only have the tube for feeding/oral medication and her C-Pap head gear--NO OTHER TUBES or LINES!   That seems crazy given the fact that 17 days ago she had eight pumps at her bedside and enough tubing to rap around her little body twenty times. 

I got to hold her again for a few hours this morning and heard her cry.  She has a very soft, little cry because she had the breathing tube for 16 days.  If she is anything like her brother, this will change.  Speaking of big brother--Brady is doing awesome back home with Daddy.  He played a great soccer game Saturday and has been enjoying all the attention from friends back home.  I think he loves his little sister mostly because he is getting to play with friends almost everyday!

It is shift change so I need to go without proofreading this post, so ignore the typos.  Prayers that Ashton stays strong and continues to amaze and do well on the C-Pap are so very appreciated.

Much love!
Brandi

I'll Praise You in this Storm

Wow, what a day!  After yesterday's rough roller coaster of ups and downs, imagine my surprise when I got to Ashton this morning to see that she was doing amazingly well.  Her night nurse told me she had a great night, but I wasn't prepared for how calm she was when I got to her.  Her doctor came by before rounds, looked at her vent. monitor and said, "We are going to make some changes and try to remove her tube today."  Imagine my SHOCK at this news.  I began praying immediately...not for her to be extubated, but for her to be peaceful and do whatever her little body would let her.  She proved she was ready to try to breath on her own and was extubated at 11:30a.m.  She was placed on a C-Pap machine and has been breathing on her own, with the machine's assistance, since that time.  We are keenly aware that her little body may not be able to sustain breathing on her own and she may have to be placed back on the ventilator, however we are choosing to have FAITH that she will do great.  She hasn't liked the C-Pap head gear or nasal tubes and has managed to remove them twice!  She gets very mad and I heard her cry for the first time today....and her momma cried with her.  She is a fighter and I am so in love with our precious daughter. 

I got to take a picture of her sweet face with only her small feeding/medication tube.

This is what the C-Pap gear looks like.

I'm sure there were other important events today, but to be honest I can't remember anything else about today.  I'm exhausted and going to bed early tonight.  Please continue to pray for her lung function and breathing without the vent.  We are choosing to praise Him in this Storm and hope you will praise Him with us.  We appreciate your prayers and words of encouragement so very much.  Without them the days and nights would be so much longer.

Much love.
Brandi


I'll Praise You in this Storm -- Casting Crowns

I was sure by now
God you would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as You mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

HUGE CHANGES-Prayers Appreciated

In a few minutes Ashton will be losing two of her accessories---her breathing tube and ventilator!  She will be transitioning to a C-Pap machine.  THIS IS A HUGE STEP and prayers are certainly appreciated and needed.  We have been warned that she may have trouble with this change and may need to be placed back on the ventilator.  A lot of babies her age have to go back to the ventilator on the first try however, we are trusting in God's plan for our little fighter and praying that she beats the odds yet again!  I'll update more later.

Thanks!
Brandi

Rough Day

Today has been a rough.  When I called in at 5:00a.m. and talked to Ashton's night nurse I was happy to hear that she had a wonderful night.  Her oxygen levels were good and her 4:00a.m. blood gas looked good.  However, when I got to her bedside at 7:00a.m. she was agitated and didn't look like she was resting comfortably.  I spent most of the morning watching her oxygen saturation and heart rate decrease, then slowly climb back up.  Three times this morning Ashton had to be taken off the ventilator and be "bagged" because of too much water in her tube.  Let me tell you, that is NOT a fun process to watch.  The monitors are going crazy and it just breaks my heart to know that she is irritated.  She cries, but you can't hear anything because of the tube helping her breath and the tube to deliver food to her stomach. You can see her sweet face all scrunched up, but you can't hear the cry that should go with it.  It absolutely broke my heart.

The doctors made rounds around 11:45a.m.  They made very few changes. Her liver function "is not great", but should come back to normal over time.  They also told me that she is progressing in regards to the ventilator, but VERY slowly.  I completely understand and agree that we want her off the ventilator as soon as possible so that she doesn't become dependant on it, but I choose to focus on the fact that she hasn't had ANY ventilator changes that went backwards since we changed machines.  To me, that is a positive even if the changes in the right direction have been little and slow to happen.  They didn't have an explanation as to why she was so agitated and her rates were dropping.  They did a chest x-ray to check the placement of the breathing tube--it was where it was suppose to be--, suctioned her tube and nose, changed her positions, but nothing seemed to be helping.  Finally, around 2:00p.m. they decided to let me hold her and try to calm her down.  I held her until 5:00p.m. and she did amazing.  Her numbers were good and she was finally calm.  They drew her blood gas at 4:00p.m. with me holding her in my arms.

Her blood gas was VERY good at 4:00p.m. so they went down on her ventilator settings again.  Unfortunately for Ashton, I had to put her back in her isolet around 5:00 so that the nurses could do their assessment.  She WAS NOT a happy camper.  Her levels dropped and she started moving her arms and legs and grabbing at her tubes/wires.  I had to leave for shift change and she was finally starting to calm down -- a little.  She is having a hard time comforting herself and obviously they will not let me hold her 24 hours a day.

PRAYER REQUESTS:

1.) Ashton has a peaceful night with no drops in her oxygen and heart rates.
2.) Ashton tolerates her vent. change well.
3.) We keep making progress and Ashton gets off the ventilator sooner rather than later.
4.) Her liver function improves.
5.) No more cardiac SVT.
6.) No intestinal issues.
7.) Peace for a very weary, worried, and tired momma.

Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you.  I will hold you up with my victorious right hand.  Isaiah 41:10 NLT

The Premmie’s Prayer

The Premmie’s Prayer

Dear God, as you look down upon us,
We know that you might have to squint.
We’re located here in the NICU:
It’s the nursery that we rent.

There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.

We have a lot in common;
All of us were in a hurry.
For many different reasons,
Our storks came a little early.

Some of us don’t know why,
We bursted out from our bubbles.
We entered into this world,
Never meaning to cause any troubles.

Mommy and Daddy are worried sick
About the odds that we must beat.
Please God, help them to realize,
That seeing us grow is a treat.

Breath by breath, we’ll learn to breathe.
Ounce by ounce we’ll tip the scale.
We’re like a boat in the ocean,
That knows not sink- only sail.

For we are living miracles,
Mommy and Daddy must simply believe,
That you have angels watching over us;
From the time we arrive, till the time we leave.

Author Unknown

Q and A

Many of you have texted, Facebooked, emailed, voicemailed questions that have gone unanswered since Ashton was born.  We decided that it would be impossible to answer all of the messages and to be honest sometimes it is too hard to restate the same answer to multiple people.  So, I thought I'd try to answer some of the questions Cody and I frequently get asked.

1.  How much did Ashton weigh when she was born?

Ashton weighed 3 pounds, 11 ounces at birth.  Unfortunately, at least a pound of that was excess fluid that her body had accumulated.

2.  How much does Ashton weigh now?

Ashton weighs approximately 3 pounds, 5 ounces as of tonight.  She has received IV fluids since birth that acted as "carrier" fluids for her medications.  It is also a fine balance of how much diuretic to give her so that her electrolytes do not get out of wack.

3.  Can I share your blog with ___________?

YES!  You absolutely can share Ashton's blog with anyone/everyone you know who is willing to pray for our sweet girl. 

4.  Are you checking your email?

No.  My blackberry is dead, I didn't bring the charger to Houston, and to be honest I don't even know where it is right now so I have no way to check my DOJ email.  Our yahoo and gmail accounts are at capacity and we unfortunately can not  answer all of them.

5.  Who is taking care of Brady?/Where is Cody?

Cody is taking care of Brady--with the assistance of tons of friends--back home in Midland.  We decided that we needed to try to keep Brady in his routine as much as possible during this time.  Also, we are trying to save as much of Cody's PTO as we can given that we don't know what the future holds for baby girl.

6.  What is Ashton's prognosis? What caused her condition?

Her prognosis is very uncertain and the doctors are uncertain what caused her condition.  Hydrops can be caused by many things--a genetic disorder, parvo virus, TORCH virus, CMV.  However, in over half of the Hydrops cases doctors never know what caused the Hydrops.  Ashton and I have been negative for all of these common conditions.  Ashton's doctors believe that the most likely explanation is that I contracted a virus at some point during the pregnancy which affected Ashton.  The virus caused her liver and heart to be in distress.  As a side effect of that distress her body was unable to rid itself of excess fluid. 

7.  Why did you go to Houston?  Why not Dallas/Waco/or anywhere else closer?

The option we were given on March 8th by the Maternal Fetal doctor in Midland was to go to Odessa on the 9th and meet with another Maternal Fetal doctor who would discuss with us the possibilities of doing further testing -- amniocenteses, etc. -- in hopes of learning why Ashton was developing hydrops.  However, delivery was not an option in their opinion and the tests they were offering were only to determine why this was happening to Ashton.  The Midland doctor told us that because her condition was 100% fatal, they would wait until her heart stopped and I would deliver a stillborn daughter.  The Midland doctor also believed that the hydrops was causing her heart to be large and that she "was unaware of any cardiac condition that would cause hydrops." Given this news we did some quick research trying to find the best Maternal Fetal doctor.  Dr. Anthony Johnson with the University of Texas ended up being who we  believed to be the best and he recently joined the UT-Memorial Herman staff in Houston.  After our meeting with Dr. Johnson we did not receive a magic answer or even good news.  Dr. Johnson was able to determine that Ashton's heart was most likely causing her hydrops.  He was very honest with us that Ashton was very sick and most likely would not survive, but he was willing to try.  Dr. Johnson was in Houston, so that is where we stayed.

8.  What hospital is Ashton in/What is her room number/Can she have visitors?

We are at Children's Memorial Herman Hospital in Houston, Texas.  Ashton is in Giraffe Pod A in the NICU.  Visitors are limited to parents, grandparents, and siblings over 3 years of age.  Visitors under 18 are not allowed.

9.  What can we bring you/what do you need?

We need your prayers for healing for Ashton and knowledge for her doctors 24/7.  I am doing well in Houston and staying at my brother's.  Growing up in the area, I know my way around and I'm hoping to get released to drive next week.  Cody and Brady are doing well in Midland.  I promise that if a specific need arises we will reach out and ask for help.

Well, I just found our they are not making any more vent. changes until 4:00a.m. so this mommy is going to try to get a few hours of sleep.  If you have any other specific questions feel free to leave a comment and I'll do my best to answer them.

Brandi

Saturday's Adventure in the NICU

Hey, all.

It is shift change, so I'm going to try to get a quick update posted while I'm waiting for the night nurses to get report.  Ashton had a good night and is having a good day.  We've gone down on her vent. settings twice and she appears to be handling the changes well! The doctors didn't make any other changes during rounds, so it has been a pretty laid back day.  (We are focused on getting her vent. settings down since everything else appears to be stable for the moment.)  Ashton has become a "touch me not"--which is the NICU term for a baby that does not like to be touched at all.  When the nurses do ANYTHING, she starts squirming and her levels start to drop.  As soon as they close her port holes, she bounces right back to where she was.  Basically, she doesn't want ANYONE in her space.  Speaking of her space--below is a picture of the bed she is in.

This is an OHMEDA Giraffe bed.  It is an amazing piece of equipment that monitors Ashton's temperature 24/7, can weigh her, monitor the humidity in the bed, and do so much more.  This bed has been a life saver, literally! 

Thatcher's grandmother gave Miss Prissy a beautiful blanket today.  I am in awe of this family's courage as they face this journey with sweet Thatcher.  My little brother is out of town this weekend, so my dad came over to Houston and has been playing chauffeur for me.  We ran a couple of errands at lunch which was good because it forced me to get out of the NICU for a little bit.  Hopefully tomorrow I can get a couple more things done so that next week goes smoothly. 

Ashton has a blood gas test at 8:30 tonight.  Depending on the results, they may make a another vent. change tonight.  Please pray that her blood gases stay good and that she handles any other vent. changes they make tonight well. 

Much Love!
Brandi

No Changes...and that is OKAY

Well, I didn't get to go to bed early, but Ashton appears to like her new ventilator.  Her blood gases have been good and they have made a couple of little changes to her settings.  When I left her just now they decided to let her stay at the same settings for the night which made this mommy feel a little better.  There is no one in this world that wants baby girl to go down on her vent. settings and get off of the ventilator completely more than her momma, but I also think giving her a night without changes may let her little body rest.  Keep the prayers coming that her vent. settings stay stable and we are able to start weaning her settings down again tomorrow.

Brandi

Oh, what a night (and day)!

Last night Ashton's blood gases where not very good.  They had to go back up on the vent. settings and her oxygen needs were high.  On top of they started to insert her picc line around 11:00 p.m.  I didn't realize that the process to insert a picc line takes about two hours!  They insert the line, take an x-ray, let the doctor review it, make changes, etc.  I'm happy to report that around 1:00a.m. this morning Ashton was the proud owner of a picc line in her left arm.  It doesn't seem to bother her as she keeps moving her arms all around.  However, this mommy didn't get much sleep because of the silly picc line!

At rounds this morning the doctors decided that Ashton needed a bigger intubation tube and a different type of ventilator because her oxygenation and blood gases where still not good.  In order to make these changes her "breathing tube" had to be removed and the newer, bigger one inserted.  This process is very scary because they are removing the one tube that is helping her little lungs.  I was allowed to stay in the room while they switched the tubes and ventilator.  Watching her numbers take a nose dive was so very, very hard.  I was praying none stop during the procedure and Ashton came through with flying colors.  The tube change went smoothly and she appears to be doing better on this ventilator.  We will have to wait and see what the blood gases show, but I'm marking the fact that the changing process went smoothly down as a huge praise!

The cardiologists came by today and basically said no changes everything looks okay.  Then one of the cardiologists looked at me and said, "Besides anyone you know who has been to Afghanistan or Iraq, your daughter has been through one of the worst battles and came out like a hero.  She is such a fighter."  I can't tell you how that made me feel.  Well, okay I guess I can try--it made me realize, yet again, what a journey our baby girl has already been on in her very short little life.  It also made me appreciate that our family has been covered by your prayers during this journey.

As for specific prayer requests we are focus primarily on getting her vent. settings down.  We would appreciate you covering Ashton with prayers for her little lungs and that she can learn to adapt to being weaned off the ventilator.  Obviously, we know this will occur in a time to be determine by our sweet girl, but we would like to see a more steady progression downward.

I am exhausted and life at the NICU bedside is starting to drain me.  I was standing in the shower last night "hearing" all the different beeps and buzzes and alarms in my head.  I desperately need a hair cut, to do laundry, and wash the dishes that are piling up in my brother's sink, but none of those things seem that important right this minute.  I'm missing Cody and Brady, but I'm so grateful to  have such amazing friends who are helping Cody keep Brady in his routine back home.  I know Brady doesn't understand completely what is going on because he keeps telling me to bring Ashton and the nurses home.  At the same time, he is LOVING his daddy time, so I'm not so sure he really wants me home! 

I'll try to give a night time update later, but no promises on that one.  If Miss Prissy cooperates and is doing well, this mommy may go to sleep early tonight.

Brandi

 

Thursday

I GOT TO HOLD ASHTON FROM 3:45 to 6:30 THIS AFTERNOON.  They call it "Kangaroo Care" and encourage all parents who have babies that are stable enough to hold their child skin-to-skin as much as possible.  It was too risky to hold her when she had her umbilical arterial line in, but as soon as that came out today Ashton was ready for some kangaroo cuddling.  She did great and I loved every minute of it.

As for developments today---there are not too many.  Our biggest achievement is that our belly circumference went down almost 2 cm and she lost 8 ounces.  For most premature babies losing wait is a bad thing.  For Ashton, it means she is losing some of the excess fluid she has had since birth.  Ashton weighed 3lbs, 11 ounces at birth.  Unfortunately, about a pound of that was fluid that she does not need and that her body could not get rid of.  She currently weighs 3 pounds, 3 ounces.  We have to be careful how much fluid she loses and how fast she loses it because we do not want to cause other issues (low sodium, low potassium, etc.) which could effect her heart function.

She had a couple of vent. changes today and she handled them well!  They are putting her picc line in tonight which will be the new way to deliver her medicines.  Please pray that all goes well and that she doesn't have any complications from this procedure. 

I'm sure I'm forgetting somethings from today, but I think life in the NICU is catching up with me.  I am exhausted and falling asleep as I type this update.  I want to thank you all again for your prayers for our daughter.  As the doctor told me today, everything can change with Ashton in a matter of minutes.  When he said that, the first thought that entered my mind was to make sure all the folks praying for our baby girl stay updated so they can continue to pray without ceasing.  As hard as the process is and has been I know where the comfort I have felt has come from. 

Brandi

Thatcher

Please pray for baby Thatcher and his parents.  Thatcher self-extubated himself ten minutes before shift change when his parents had to leave his bedside.  Please pray for peace for Thatcher's parents as they face many tough days and nights.  I do not know all of the ins and outs of the obstacles Thatcher is facing, but I can see the weary look in his mom and dad's eyes.

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7

Mommy Time

IF everything goes according to plan (I'll detail the plan below) I should get to hold Ashton sometime this afternoon!!!!!!!!!!  You all can't image how excited I am to get to hold my "eleven day old" sweet girl. Now, should something change and I may not be able to hold her today and that is OKAY because I know that everything will happen in His time.

Okay, today's plan--not too many changes.  The picc line will be inserted today, one of her umbilical lines will be taken out today, they will discontinue her blood pressure medicine today, and they will make vent. decreases today if her gases look good.  They are tweaking a few other things, but nothing major today.  We are praying that all of that goes well today and she adapts to these changes.

I haven't posted any photos of baby girl on the blog yet, mostly because I haven't had time to download the photos from my phone and we didn't think to bring the camera from Midland.  Also, I didn't know how folks would react to seeing her with the tubes, lines, and really swollen.  However, this is entirely too cute not to share.  The nurse turned on the light over Ashton's bed this morning and she immediately brought her hands to her face.  Obviously, she is going to be like her daddy and not like to be woken up from her sweet dreams.

Same prayer requests as earlier.  1.) Smooth picc line insertion.  2.) Adjustments to the vent. are accepted and handled well.

Much Love!
Brandi

Wednesday Night

Hey all!
Ashton had a good night!  Before I left last night, Ashton's night nurses let me give her a bath--with their help of course.  Baths for a 30 week gestation baby pretty much means you sponge off the areas that don't have tubes, wires, etc.  It also means that mommy got to touch her and rub her for 20 minutes straight!  Ashton is such a little lady because she LOVED her bath.  She was so relaxed and her oxygen levels, heart rates, etc. stayed great.  Look out Brady---I foresee a ton of fights over the bathroom in your future.  They didn't make any changes to her vent. overnight, but her blood gases are MUCH better.  I'm sure they will talk about making changes at rounds this morning so that we can try to start moving towards getting rid of the vent.  Hopefully, Miss Prissy handles the changes they make today better than she did the last couple of days.  She spit up last night, but wouldn't you if you were being feed milk by a tube while laying on your back?  She ate her next feeding, so I'm thinking the spit up may not be a big deal.  The picc line should be going in today.  I know I have said that for the last three days, but that is life in the NICU.  Please pray that the picc line insertion goes well.  I know it will be painful--IV's aren't fun if you are an adult--and I'm praying for a smooth insertion!  Until rounds, I won't know what else we have in store for the day.  I'll update more in a bit....

B.

Wednesday Afternoon

Afternoon Update - Wednesday, March 21st

Praises: We are off both IV heart medications; Ashton had her first eye exam; Ashton's follow-up Echocardiogram after being off the first heart medication showed NO decrease in heart function; Ashton is tolerating her 2cc milk feedings well and digesting the milk well.

Overall, today has been a good day. Vent. wise she hasn't made any progress and slid back just a little bit in her settings. Her lungs are "very wet" (lots of fluid) so it makes it pretty hard for her to adapt to the vent. changes. Her blood gases have been on the bad side, so they have given her a couple of medications to help with her respiration.

The neonatal opthamologist came by and did a full eye exam. I can't imagine what she could see in a 30 week gestation old babies eyes, but that is why she is the expert. She said Ashton's corneas, retinas, and overall eye function looks normal! She did believe that her main eye nerves were on the small side, but there is no way to tell if that means any decreased eye function. If Ashton is not tracking well at 6 months we will come back to Houston for another appointment with her, but otherwise she doesn't see any need to see her again. This is the first doctor that has talked to me about an appointment outside of the hospital or about Ashton at 6 months old. I started crying like a baby and scared the opthamologist into thinking I didn't understand she was giving me good news! It is hard going from doctors telling you your baby has "zero chance of survival" to "call me at six months if you don't think she is tracking well." I know that we still face many obstacles on this journey and Ashton's condition could change in an instant, but I CHOOSE to have faith on this journey.

We didn't do the picc line today because the doctor wanted to stop the other IV heart medicine and make as sure as we can be that we were not going to need the picc line with two ports. Since she has tolerated the stopping of the IV heart medicines well today, I am pretty certain the picc line will be inserted tomorrow. However, as I've learned NOTHING in the NICU is certain!

The follow-up echocardiogram was good.  The cardiologist talked to me about what/how her heart may progress.  The neonatologist talked to me about the possibility of heart surgery to fix the extra blood vessel her heart has if it does not close on its own.  That is at least "two weeks" down the road which is a life time, literally, to Ashton.  I'm not even thinking about that process yet!

Our biggest prayer requests right now would be that we start improving on our vent. settings and that our heart function stays stable now that we are off the IV heart medicines.  I know everyone's lives are so busy.  We can't begin to tell you how much your prayers and messages have meant to us.  We have seen God doing amazing things with our sweet angel and we are trusting in his plan for our family.   Trust in the LORD with all your heart and lean not on your own understanding. Proverbs 3:5 NIV

Much love,
Brandi

Wednesday

Days and nights, nights and days, everything is starting to run together.  Miss prissy had an OKAY night.  GOOD news first:  Ashton is off the Milrinone (one of her heart medicines)!!! Obviously this doesn' mean her heart is "fixed", but it does mean that she tolerated taking that medicine away which had to be given via IV.  This is super important because we want her to be on oral heart medications.  She also tolerated her first milk feeding last night!   I know 2ccs of milk doesn't sound like a big deal, but being a mommy who is able to provide something--even 2ccs of mommy milk-- to her little girl is big deal to this mommy. She couldn't maintain her vent. settings last night, so we had to go back up on her pressures.  Her 8:00a.m.blood gases didn't look too good either.  However, I am not looking at this as a step back because I'm BELIEVING that GOD's plan for Ashton.  I'm BELIEVING in Ashton and her fighting spirit.  I'm BELIEVING in the wisdom GOD is providing Ashton's team of doctors, nurses, respiratory therapists, social workers, and every other person that comes and check on our sweet girl many times a day.  So, maybe we pushed her a little too hard yesterday, but she didn't crash, didn't crater, she held her own.  She is fighting again this morning and I'm praying we see a turn around in her respiratory ability soon and her heart rate/function stays stable.

This morning's specific prayer requests:

1.) Improvement in her respiratory function so that we don't have to change the vent. settings more in the wrong direction.
2.) That we are able to stop the Amiodarone (the second IV heart medication) today.
3.) That we can insert a single picc line without any complications.
4.) Peace for a worried mommy.

I'll post again soon since Ashton's nurses let me bring my laptop to her bedside today!

Much love.
Brandi