December 2, 2017 – Papa writes ….

First off, we need to apologize for not getting a post out last night with yesterday’s results / observations, sorry!  It was Cheryl’s birthday and we had both Gavin and Chloe with us, and well, life kinda got in the way …..

Yes, I said Cheryl, as this is Dean, aka Papa, as I am typing an update as we drive to Knoxville for a bit of an escape, as I had bought Cheryl tickets a few months ago for her birthday to see Chris Tomlin’s Christmas show tonight, having no idea what this past week’s events would include.  So with the help of Nicole, and some REALLY great friends of hers, we lined up a fun day for Gavin at his friend’s house, and a fun day for Chloe at her friend’s house today.

So, since I have the “pen” so to speak, and your attention, I would like to THANK everyone for following us along on our unexpected journey, your thoughts and prayers for Miss JoJo and all of us, and your donations to the GoFundMe campaign to help Nicole and Brandon with their lost wages!  You will never know how touching it has been to me!  THANK YOU, from the bottom of my heart!

I would also like to THANK those who have said how brave we have been on this journey, how we have been living out our faith and trust in God, how we are inspiring and encouraging others, etc.  While these are all nice things to hear,  I would be quick to say that just about everyone would be doing the same if they were walking in our shoes, as we really do not have much of a choice given the situation.

But more importantly, I would tell you we take no credit for such things, as it is all because of our Faith and Trust in Him, the One who ultimately comforts us, protects us, cares for us, and LOVES us.  Yes, I am speaking about our God, the Great I AM, our Rock, our Redeemer, Our Savior.  The King of kings, and Lord of lords.

Yesterday was not a “fun” day like one would hope for their spouse’s birthday, as we are 4-1/2 hours away from where JoJo, Nicole, and Brandon are at UNC Chapel Hill Children’s Hospital, and well it’s always kind of scary when anyone has to go under general anesthesia, let alone a five month old.  They are times when you just want to be there in person, not that we can necessarily do anything to improve or help things, but it would have been good to be there to offer support and just “be there”.  But, the other two grands need as much of a “normal” life as we can offer them too, so home we stayed.

I will spare you the pictures of when JoJo was just waking up and was miserable, just like the last time she came off anesthesia.  Needless to say they were heart breaking to see her suffering.

It does help knowing they are in very capable hands there, and knowing that getting second opinions is always good.  Don’t get me wrong, JoJo has some high quality Doctors in Asheville already, some of whom even trained at UNC Chapel Hill, but it is reassuring to get someone else to have a look and verify things.

Brandon has sent his Doctor notes as always (listed below), but the laymen’s report is that the ENT scoped her yesterday to see if he could find anything that might have been “hiding” or different from her last scope six weeks ago.  This was followed by the Pulmonary Doctor having a look at her lungs to make sure there were no secretions or junk growing in her lungs that should not be there.

We were all partly hoping everything was just fine “as-is”, but mostly hoping they could find something they could “fix” to help with her continued aspiration and breathing difficulties.

The ENT basically reported that the “gel” procedure she had six weeks ago to fill in a depression near her vocal box looked really good, but she is still a bit swollen from that, that her airway is narrower than “normal”, that he did not find a tracheoesophageal fistula or anything he could “fix”, and that he thinks she will develop a stronger airway as she grows older, hopefully eliminating her need for supplemental oxygen.

Not exactly the news we wanted for the side of us hoping for something to “fix”, but actually really good news for the side of us that hoped everything was fine “as-is”.  So, mixed feeling to say the least, as we would love to see her not have to struggle with her breathing.

She will probably be there a minimum of a few more days, unless they decide to do more tests or procedures while she is there.  We shall wait and see, but hope they can come home and get back to a bit more “normal” life with the other two kids.

Today I am THANKFUL that JoJo is recovering from being under anesthesia and having the scoping procedure!

Today I am THANKFUL for the quality care JoJo is receiving at UNC Chapel Hill Children’s Hospital!

Today I am THANKFUL for the confirmation that her Doctors in Asheville have done a great job!

Today I am THANKFUL for friends to help out with the other two grand kids so we could escape for a bit!

Today I am THANKFUL to spend a day celebrating Cheryl, my soul mate, my love, and my best friend!

Today I am THANKFUL for some really great friends along life’s journey (some removed by miles and years of separation), our past and present church family, and our brothers and sisters in Christ who have been praying, asking what they can do, providing encouragement, providing financial support for Nicole and Brandon, helping take care of the kids and pets, and just being great people!

Doctor notes:

 Pyper UNC Chapel Hill Dr. Wade McClain Pediatric ENT Surgeon

  • Has Elliptical cricoid
  • Has strider breathing in… he thinks it’s from swelling
  • Her airway is borderline size 3 should be size 3.5 intubation
  • Thinks she will literally grow out of oxygen …. Her airway will get bigger and stiffer
  • Tough to view for intubation purposes… grade 2b view

Thursday, November 30, 2017

Pyper turned 5 months old today!!  What a pure and lovely blessing she is to our family.  Oh what a journey she has taken us on.  The road ahead may be unclear and it may have its “bumps” and “curves”, but I know the One that directs our path and I fully trust in Him, for He is faithful.

I ended up with a day “off” today since I did not have Pyper to take care of.  I got a lot accomplished, but I would have rather been holding my littlest oneIt is so hard having her so far away.  I remember complaining that Asheville was far away and it is only 45 minutes.  Now she is 5 hours away.  It all takes its toll.  Nicole misses Gavin and Chloe, and they want to see their mommy.  Dean and I try to fill in as best as we can, but it still isn’t the same. 

Pyper had her sleep study last night, and was disconnected at 6:00am.  Nicole sent us a picture of her that she had taken last night after they got her all “wired” up. (see full results of her sleep study below).

The results of the Echocardiogram that was done yesterday are listed at the bottom under doctor notes..

Tomorrow will be a BIG day for Pyper and a hard one for Brandon and Nicole.  Pyper will be put under general anesthesia and they will have to intubate her.  The ENT will do an airway evaluation and laryngoscopy, providing them with a 2nd opinion and potential repairs if they find anything.  Then the Pulmonologist will do a bronchoscopy of her lungs.  Both have been given permission to do procedures they deem necessary while they are doing their evaluations.  This is set to take place between 1:00 – 3:00pm tomorrow, so we cherish your prayers during that time.  These are the times that I especially wish that I could be there for Nicole. Just to be able to sit with her.  Unfortunately, the distance won’t allow for it this time.  

It has been mentioned that they may be able to discharge Pyper Sunday evening.  I am guessing it all depends on how she does tomorrow, what they find and do during the procedures, and how quickly they can take the intubation tube out.  Only time will tell.  We are needing answers as to what is causing her breathing issues and her continued aspiration issues, and we are praying that we will have some tomorrow. 

Today I am THANKFUL for the Pediatric Cuddler that came and rocked Pyper so that Nicole and Brandon could get out of the hospital for a bit.  They have what they call a Cuddle Team … isn’t that awesome!!

Today I am THANKFUL for Pyper and the beauty that she adds to our world. 

 

Doctors notes:

Dr Fan Neurologist 11-30-17

  • Sleep study was technically challenging because it was portable and not in the lab.
  • Has mild apnea in the apnea range
  • Examples for a ten year old kid they pause for 20 seconds and detat down to 89
  • During the study stats a little bit lower in the study …lowest was 89. Has tendency to drop her stats with movement or apnea.
  • When a little older a few months older do an in lab study .
  • Recommended possible nasal steroids to help open up airway.
  • Sleep study confirms she easily drops her stats and that it’s related to her underlining disease.
  • Respiration was like 50-60 when she was asleep
  • Hopefully it will improve over time

 

Echocardiogram results

  • Echo shows mild pulmonary stenosis at Sinotubular ridge junction
  • Pulmonary stenosis is a condition characterized by obstruction to blood flow from the right ventricle to the pulmonary artery. This obstruction is caused by narrowing (stenosis) at one or more points from the right ventricle to the pulmonary artery
  • Children with mild pulmonary valve stenosis rarely require treatment. Patients with mild pulmonary valve stenosis are healthy, can participate in all types of physical activities and sporting events, and lead normal lives.
  • Mild pulmonary valve stenosis in childhood rarely progresses after the first year of life. However, mild pulmonary stenosis in a young infant may progress to more severe degrees and requires careful follow-up.

 

 

Wednesday, November 29, 2017

Pyper had a much “quieter” day today than she did yesterday. Not as much activity going on, so not as much to report on.

The picture below shows Pyper as they got her set up for her swallow study. She is still aspirating. Not what we wanted to hear. The next plan of action will be to put her under general anesthesia so the ENT and Pulmonologist can go in and look around.

She had an Echocardiogram done this morning, but they have not received any news back from this yet.

Around 8:45pm tonight she was getting hooked up for her sleep study. They will monitor her for 6 hours tonight.

Top priority is focusing on her breathing and oxygen issues.

I find myself wanting answers to all of Pyper’s “issues”, forgetting that some are more important than others.

While this is all taking place in Chapel Hill, NC, 4-1/2 hours away, here is what is happening at home:

Gavin and I are driving to school this morning and he says to me “Nana, is Pyper disabled?”. My heart stopped for just a brief moment as I “chewed” on his question. My response: “We won’t know that until she is older, but she is what we would call a special needs baby”. He asked me if she would walk like other babies and do other things like they would. I told him that Pyper has a lot of health issues right now and the doctors are working on figuring out what is causing them. I explained that Pyper will do all the things that other babies will do, it will just take her longer to do them. He knows that we are praying for her healing. These are such beautiful teaching opportunities and I took full advantage of it 🙂 The door was wide open for a conversation about a boy at school (in his class) that has some issues. I explained to him that it was not this boys choosing to have these issues, but that he, just like everyone else, longs to fit in and have friends. I told him that Pyper is no different. She didn’t choose to have health issues and that someday she will want to fit in and have friends just like he does. I have seen Gavin’s heart soften toward this boy over the past couple of months. I believe that this journey with Pyper is giving Gavin a heart that will be filled with empathy and compassion for those that may be a little different. I envision him and Chloe being advocates and champions for the “underdog”.

It saddens my heart that this little boy was carrying the burden of a question such as this. You see, before Gavin voiced this question, I know that he had held it inside and worried about it for quite awhile. He is so perceptive to everything that goes on around him. He takes it all in and worries about things more than most children his age. He genuinely cares and shows concern for people. He loves his little sister and is already her protector. She doesn’t know it yet, but she is one blessed little girl to have a brother and sister that will walk the journey ahead right along side of her.

As I drove home today after dropping Gavin off at school, I realized that I have never associated the word disabled with Pyper. It just has never crossed my mind. And I thought why hadn’t it? I haven’t entertained that word because I believe in a God that can heal Pyper, either miraculously, and/or by using the doctors. I do not have to believe the lies of Satan that would suggest otherwise. I have chosen to keep my eyes on the One who’s promises are YES and AMEN!

Today I am THANKFUL for a little boy who loves his little sister.

Today I am THANKFUL that God gives me teachable moments in the lives of my grandchildren.

November 28, 2017

This picture is of our happy, happy little girl today. Even amongst all that she is going through, she still shares her beautiful smile.

In last nights post I said I was thankful that Pyper had a team doctors that are “ON IT”! Well today has proven that they truly are “ON IT” and that they will figure out what is going on. My phone was continually alerting me to text messages each time a doctor, a resident or a fellow left the room after evaluating Pyper. Here is a compilation of all that was learned today:

Pulmonologist fellow (Nikki Worthington): ordering a sleep study and bronchoscopy. The sleep study will take some time to get on the schedule.

Pulmonologist doctor (Terry Noah): asked questions about her noisy breathing. Her x-ray from last night did not give any conclusive answers, but also did not show pneuomonia or collapsed lung. Her noisy breathing suggests something is going on in her upper airway. The next step will be to put Pyper under general anesthesia and examine the airway. He will use a tiny scope and if he finds any secretions he will remove them and have them examined. Not sure when this will be scheduled.

ENT resident (Dr. Brian Brandon): under general anesthesia wants to go in and “look around”. He isn’t convinced she has a sub mucous clef palate, but won’t know until he goes in and explores.

Speech Therapy: her palate is high. If she is at risk for aspiration then she is at a higher risk for aspiration from reflux. She ordered a barium swallow study for today, but it was postponed until tomorrow because the x-ray lab was backed up.

Dietician (Samuel): said to keep her on 110ml for a total of 7 feedings. She is in the 27th percentile weight for her length and 4th percentile for her length. She is possibly not growing and gaining like she should because she is laboring to breath and expending too many calories.

That’s the happenings of their day. There were not any definitive answers or conclusions today, but progress is being made!! Please continue to pray for wisdom, discernment, and direction for all of Pyper’s doctors. God’s hand is directing Pyper’s team of doctors and they will figure this out!!

I have to give a LOUD shout of praise for the amazing provisions that were made today for Nicole and Brandon’s through the Go Fund Me Campaign that was set up last night. I am in awe of God’s goodness as He uses the generosity of people to bless Nicole and Brandon. $1,500.00 in a 24 hour period. My heart rejoices and I am excited to see this number rise as God leads others to give. Thank you so very much to those that have given.

On behalf of my sleeping baby girl we say goodnight to all, Love Pyper Jo and Nana

Today I am THANKFUL for Pyper’s team of doctors that are working TOGETHER to provide answers.

Today I am THANKFUL for the generosity of family and friends that have blessed Nicole and Brandon by providing finances that will help alleviate the financial stresses of caring for a baby with special needs.

Today I am THANKFUL for evaluations that will lead to answers and solutions.

 

Monday, November 27, 2017

The car, filled with all of Pyper’s equipment, Pyper, Nicole and Brandon left the driveway early Sunday afternoon and headed toward Chapel Hill.

They had a 5 hour drive ahead of them. This morning would bring them to UNC Chapel Hill Children’s Hospital, where they were to meet with a doctor from the Complex Critical Care Team. They fully expected to be at the hospital for a good part of the day as Pyper was evaluated, questions were asked and answered, specialist assigned to her team and a care plan discussed, set-up and put into place.

Things never go as planned and today was no exception 🙂 I say this with a smile on my face because I am truly learning to expect the unexpected. Pyper’s appointment was at 9:40am and by 11:50am the doctor’s had decided to admit Pyper out of special concern regarding her respiratory breathing rate and retraction. They want to get things figured out, and by admitting her it would be a quick and efficient way of getting her team of doctors all in to see her. If it was done on an out patient basis it could take a couple of months. So, while unexpected, it is a blessing. A great big blessing!! Our prayer for this appointment was for 2nd opinions and a plan of action to be put in place that would provide answers. God delivered on these prayers! Although Nicole and Brandon thought this was a one night adventure it has turned into at least 2, but probably 3.

I have included Brandon’s detailed notes below from today’s visit. Since Brandon sent me his notes there are a few more things to share. Respiratory came in and said her issue is something in the upper airway Twice this evening the nurses came running into the room when Pyper’s O2 levels dropped below 70. As I write this entry (8:50pm) they have just come in and drawn blood and are now taking Pyper for a chest x-ray (checking for pneumonia and any kind of abnormalities). I guess 9:00pm at night is a good time to do these things! Tomorrow will bring about a whole team of doctors that will be evaluating Pyper. Please be in prayer for wisdom as they work to figure out what is going on and how best to move forward. We are believing in healing for Pyper, but God can use the hands of doctors to provide that healing too! I will give an update tomorrow evening after Pyper is poked and prodded and sent for tests and more tests. And through it all she remains a happy little girl.

Right before I started to write my entry for tonight I set up a Go Fund Me Campaign to help Nicole and Brandon with lost wages as they continue to miss work and for travel expenses as they are away from home. Up to this point, they have missed 13 days of work. I knew that there would be many more days missed in the future because of doctor appointments and daycare issues. Pyper’s primary care doctor has told them that Pyper can not be put in a daycare environment. Her body systems are too compromised, and if she gets sick it will put her back in the hospital. I could see the stress that it was putting on them and I wanted to do something to help. I knew that there were a couple of people that had already given Brandon money to help with expenses and I thought about all the other people that have asked us “what can we do to help?” So, Pyper’s Journey on Go Fund Me was birthed.

As I was typing away I got a notification that the first donation had been made. Wait a minute, WHAT? I couldn’t believe my eyes. Someone had made a $100.00 donation. I literally started to tear up. Then another donation came across my computer screen. This one was for $300.00. I was now crying. These two donations came from people that know Dean and I (one of them doesn’t even really know us, but attends the same church as we do) and they know OF Pyper, Nicole and Brandon, but do not know them personally. I was so amazed by their generosity and their sacrificial gift to my daughter and her family. God is so, so good.

Today I am THANKFUL for a team of doctors that are “ON IT” and are not going to quit until they have answers.

Today I am THANKFUL that Pyper was admitted to the hospital.

Today I am THANKFUL for the finances that God blesses people with, and they in turn bless others with it.

Today I am THANKFUL for a baby girl that smiles through it all.

 

Brandon’s Notes:

  • Pyper Chapel Hill – Elizabeth Walters NP student for Dr. Maria Ferris 11-27-17
  • Oxygen still on?
  • Refluxing?
  • Vision?
  • 11 pounds 11.7 ounces
  • 58.5 cm long … 23 inches
  • Admit to Chapel Hill…they did not like how she was breathing… also being admitted to the hospital will speed up her seeing a bunch of specialists and get the team approach
  • Dr Cecil who is a senior resident was in and spent a good while and they asked what our main concerns were. We informed them that aspiration and oxygen were our main concerns. They are going to have neurology, pulmonology, endocrinologist, feeding team, GI, airways, and ENT all come see her.
  • Dr. Julie Byerly is the attending she came in and saw her . Her main concern is her breathing and that she isn’t growing like she should because she is burning too many calories when breathing.
  • She de stat down to 60 while she was sleeping . The nurse came rushing in to check on her because her oxygen wave on the screen was normal. They gave us the rapid response information in case it happens again and we need to call for help and said to call out to the nurses station as well.
  • Plan is to begin a bunch of visits tomorrow from doctors to get a team approach and figure out her breathing situation.

Wednesday, November 22, 2017

I apologize that I did not get this post out last night. Dean’s dad and his wife arrived from Florida and are staying with us for Thanksgiving. We were enjoying “catching up” and before I knew it it was 10:00pm.

Anyways, here are the happenings of yesterday’s doctor appointments. Brandon’s incredible notes will explain so much more but I will share my “take” on them.

The first appointment was at 8:00am with Dr. Chad (genetics). They confirmed that Pyper does not have Digeorge Syndrome! Chromosome 22 is not missing from her DNA. They took blood from Pyper, Brandon and Nicole, took each of their medical history / background, and will be doing an X Chromosome test which looks for any abnormalities along her Chromosome chain, maybe even at 22, which was the one they suspected could have been missing. This will take 2-3 months to get results back.

They are looking to see if Brandon or Nicole are carriers for a recessive gene and checking Pyper for the possibility of Opitz G/BBB syndrome. While he suspects it could be this, he has doubts as well because the two main factors are wide spaced eyes (which she doesn’t have) and it is much more prevalent in males. She does have other symptoms of this particular syndrome, thus why he suspects it could be it.

Next came the ENT (Dr. Rogers). Nothing new to really report on here. Still no known cause as to why Pyper is still aspirating. Brandon’s notes give a clear picture from this appointment.

The bottom line in all of this is that we have no definitive answers yet. Dr. Rogers said it will eventually all get pieced together. This waiting and unknown is so HARD!!

Up next is a trip to Raleigh/Durham on Sunday afternoon to meet with a doctor from the critical care team at UNC Chapel Hill on Monday morning. They will go over Pyper’s medical records, talk to Nicole and Brandon, make assessments and referrals to specialist that they feel she needs. This group of doctors will make up Pyper’s team of specialists that will all work together for her long term care going forward. They will give 2nd opinions as to what has already been diagnosed as well. We are praying for answers!!

Today I am THANKFUL that even in the uncertainty of Pyper’s health issues I can rest in the CERTAINTY of an Almighty God that knows her future.

Happy Thanksgiving to all!

11/21/17

Doctor notes from Brandon:

Pyper Genetics Dr. Chad Haldeman-Englert 11-21-17

  • Did thorough family history medically/genetic
  • Does not have Digeorge Syndrome… chromosome 22 is not missing… nothing is missing from her DNA… question is does she have a change to an individual gene that was not tested for
  • Could be brand new genetic change for baby….me and Nicole could be carriers of a recessive gene….
  • Become sequencing… Will be the test… take blood from me and Nicole and results come in 2 months
  • Dr Chad thinks midline disorder such as midline gene and possibly could have opitz g-bbb… gene involved would be midline one….possibly j shaped spot where pituitary gland sits mps muco polysacharrideosses… he doubts mps… gene in region for Digeorge could be malformed
  • Doc said as she gets older he suspects we will be dealing with less medical issues such as aspiration and more developmental
  • Un-diagnosed diseases network….Vanderbilt and Duke… it is Grant funded and Medicaid doesn’t matter…. need physician letter and we apply online … Dr. Chad said he would write letter
  • Go to Mission Portal for medical records
  • Has curvature of pinkies…. whirl posterior placed on scalp
    60 cm long…23.5 inches
  • Drawing blood on me and Nicole and Pyper today
  • Took picture for facial recognition program that looks for genetic abnormalities

Pyper ENT Surgery Follow up Dr. Roberts 11-21-17

  • Why is she still on oxygen? Not sure… said it sounds like she is still having aspiration episodes
  • Is she refluxing and aspirating? Could be but doesn’t think so… He said prilosec twice a day is the thing to do…he recommended the Nissen surgery for reflux…he also said ask for 2nd opinion at Chapel Hill
  • When does squeak go away? 8 to 12 months usually
  • Ask about airway team in Chapel Hill… Dr. Roberts said they’re great and he s worked slot with them
  • Get appt in 2 to 3 months to make sure we are going in right direction
  • Have Chapel Hill send him notes
  • Dr. Roberts will be happy to work with Dr. Kiser if needed for GI procedures
  • He said her breathing bothers him but wants to keep her out of hospital
  • Tuesday January 30th at 09:50 follow up

 

Monday, November 20, 2017

Pyper in Hat

Pyper - Nana - Walking

Since my last post we received GREAT news from Pyper’s endocrinologist.  Her pituitary gland is producing ACTH and she does not need any hormone replacement.  Her levels were “great” the doctor said!  This is amazing seeing that her pituitary gland is half the size it should be.  

I had Pyper last Thursday when she had her first visit with a vision therapist.  She has what is called CVI (Cortical Vision Impairment).  Basically what this means is that she can see things, but her brain isn’t processing it.  Her therapist said that with bi-weekly therapy sessions her brain will begin to work in conjunction with her eyes.  She said she has only seen her patients get better and better!  

Tomorrow will find Pyper, Nicole and Brandon in Asheville for another round of doctor appointments.  First thing is an appointment with the Genetics doctor and then a follow-up with her ENT.  

I will post tomorrow evening after I get reports from Nicole and Brandon.

Today I am THANKFUL that Pyper has a pituitary gland that works beautifully.

Today I am THANKFUL for Pyper’s big brother who loves her so sweetly.

 

 

 

Tuesday, November 14, 2017

There is someone that I want to tell you about tonight before I give my update on Pyper. His name is Brandon. He is Pyper’s daddy. This man took on all the events of today by himself. A decision had to be made as to which one would go to the appointments today and which one would stay and work. It has been difficult financially for both he and Nicole to be missing so much work. Nicole had to be at work, so it was a daddy and Pyper day! This was not just a stay at home sort of day …

To take Pyper out of the house requires a whole lot of equipment and planning. You don’t get to just grab the packed diaper bag and dash out the door. You do need the diaper bag, but you also need her portable oxygen tank, her O2 monitor and her feeding machine. You don’t get to just pick Pyper up and put her in her car seat. You have to be mindful of the 3 different tubes that are attached to her and make sure they aren’t kinked, twisted or poking her. After all that is taken care of …

There was a 45 minute drive to Asheville which started their day at 8:00 am, and would later end at 4:00pm when Brandon would come walking into the house with Ms. JoJo. Brandon didn’t just go to one destination with Pyper today, he went to two different places. He carried and lugged all the equipment in, then out, then in and then out. He gave feedings and changed diapers and held his little girl as she was poked at with needles and watched as she had a tests done. This daddy LOVES his little girl and today he is my HERO. I don’t know many men that could have done (or would have done) what Brandon did today.

Okay, so now for my update on today’s happenings:

Pyper had blood work drawn (it took 3 tries before they found a willing vein) for the Endocrinologist (checking ACTH, Cortisol and other levels)

Next it was on to her swallow study (full results are listed below). Basically what they saw today was Pyper is still aspirating, but not as much as before. From this swallow test today, there was a suspicion that she may have something called a trans esophageal fistula (a hole in her esophagus). They were able to get a referral from Pyper’s primary care doctor to order another Upper GI to see if there was possibly a hole beneath her vocal cords. A call to the hospital to see if they could do it today while she was there produced a “yes”, as they just happened to have a cancellation at the right time, and they were able to fit Pyper in! Yipeee! Not so sure Brandon was rejoicing at that exact moment, but this saved them from another missed day of work, and another trip to Asheville. We are always looking for the good in a situation. 🙂

Brandon got home with Pyper in just enough time to settle her in before a nurse arrived at the house to do a 2 hour assessment on Pyper. This is in preparation for a home health care RN. In between them getting home and the nurse arriving, I had a little bit of time to hold this little one. As Chloe and I were talking to her, she began to smile, and then she began to giggle. Yup, straight up giggles. You have to listen very carefully because Pyper has almost no voice, but as we listened you could hear the sweet sound of her giggle … and you could see it in her eyes as they lit up with a twinkle.

I can not report tonight that Pyper gets to have her NG tube taken out, or that I can give her a bottle, but things are better, and healing is taking place. I am humbly reminded today that my (our) timing is not that of the Lord’s. But this one thing I know … God is good, He is faithful and He is taking care of Pyper Jo. The prayers will not end just because the swallow study is done. No, indeed they will continue on!! Thank you to all who prayed for Pyper today.

Today I am THANKFUL that Pyper has her very own HERO…her daddy.

Today I am THANKFUL for Brandon…a daddy that would do anything for his little girl.

Today I am THANKFUL for baby giggles that are received just when you need your spirits lifted.

 

11/14/17

Doctor notes from Brandon:

Mindy – Swallow Study

  • When given 0.5 ml swallowed safely
  • With nipple still aspirating, but smaller amount
  • Aspirating below vocal cords
  • Trans esophageal fistula possibility … Mindy going to ask Dr. Roberts if he went down that far to see below vocal cords …
  • Will have to check with pediatric radiologist
  • Mindy is wondering if she has really bad acid reflux and it could be possible that her coughing episodes could be linked to reflux

Upper GI

  • There were no signs on a trans esophageal fistula (hole in her esophagus)
  • Follow up with Dr. Roberts on 11/21/17

Wednesday, November 8, 2017

Tonight I am sad because I am home sick and will not have my day with Pyper tomorrow. I look forward to Thursday’s, but not at the expense of possibly spreading germs to Pyper and the rest of the family.

I have had people asking “how is Pyper doing”? so I thought I better write a post to update everyone. We have been in a “holding pattern” of sorts. No scheduled doctor appointments (yippee). No specialists to see. Just day to day life with an infant that has a feeding tube in her nose, a nose cannula for oxygen and a cord attached to her foot that reads her oxygen levels.

Last Saturday Pyper began throwing up and Nicole and Brandon ended up at the pediatricians office first thing Sunday morning. Turns out Pyper has an ear infection. Just add it to the list! Then Tuesday Pyper decided to pull her feeding tube out of her nose and Brandon had to insert a new one. Like I said, just day to day life…

Pyper does have an upcoming swallow study next Tuesday the 14th. Please be praying for results that show that there is no aspirating! If there is no aspirating that means the feeding tube could come out and there would not be a need for a G tube in her stomach. Which means this Nana could feed Pyper a bottle!! We are claiming that healing has taken place and that her lungs are clear and healed as well.

Today I am THANKFUL for God’s healing that has already taken place and continues to take place within Pyper’s body.

Today I am THANKFUL for a quiet week with little to journal about.

Good night all.

Thursday, Nov. 2, 2017

The dictionary’s definition:

MIRACLE

noun

A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency 

A highly improbable or extraordinary event

 

Nana’s  definition: 

MIRACLE

noun

An event that is explicable because of a divine GOD.

Dancing with a precious baby as she falls asleep, then continuing to DANCE as you just stare at her knowing that God Himself has touched her. 

A highly probable and extraordinary event that takes place because of God Almighty.

I can describe today as a smilely kind of day.  I spent the day with Pyper today, and she was so full of smiles today!!  It’s like she had stored them up for a few days and they all came spilling out!  She was so happy and content.

Specific prayers for Pyper:

  • Lungs to be fully healed and able to breath without supplemental oxygen.
  • Swallow study on Nov. 14th.  That there would be no aspirating…which would mean no need for a G tube and her NG tube could come out.
  • Growth of new optic nerves (I want her Opthamologist to experience and see a miracle first hand when Pyper goes back in January).
  • A brand new Pituitary Gland and Thyroid Gland (Yes, God can heal the ones she has, but how cool would it be for Pyper to get fully functional new ones).

We serve a mighty God who can do all things.  There is nothing that is too small or too big for Him.  There is that saying: “Go Big or Go Home”.  I say: “Pray Boldly and Expect Big Things”.

Today I am THANKFUL for smiles and being able to dance while holding a miracle in my arms.