What Zach has been up to...

Thank you all for continuing to remember Blair, Keri, Sydney, and baby Zach in your thoughts and prayers. Zach is enjoying all of the constant snuggles and kisses he is receiving since coming home from the hospital.  He is such a good and happy baby and has already stolen everyone's hearts (especially mine).  Blair, Keri, and Sydney are LOVING having him home!  Sydney is an exceptionally helpful and loving big sister.  She loves her baby brother so much.    

Zach has been a busy little guy the past few weeks.  Many friends and family have come to visit and hold him.  He has already been to church, library story time, Sydney's school, the lake, Chipotle (his mommy's favorite lunch spot), Jason's Deli, and the Zoo (Sydney's request).  He also cooperated for 3 professional photo shoots!  He really enjoys looking at the Christmas tree lights, his rainforest crib toy, and star projector night light.  His 1st Thanksgiving was very special as he was surrounded by many members of his family.

Enjoy these beautiful pictures.......

HOME!!!

Hello all!  There are several updates from this week... 

First, I am so happy to announce that after more than 3 months, Blair, Keri, and Sydney were able to welcome Zachary HOME Wednesday!!  He is adjusting very well to his new surroundings.

Blair and Keri were introduced to Dr. Kane who oversees the Scott and White pediatric hospice program.  After reviewing Zach's report and performing an examination, he recommended they enroll Zach into this program.  Blair and Keri have known that Zach has an incurable neuromuscular disorder and that their time with him may be short but to have it reconfirmed was emotionally tough.  Blair and Keri were really impressed with Dr. Kane and his team and consider it a blessing that they have come into their lives.  Blair and Keri's plan is to give Zach adventure and joy and cherish every single moment they have with him. 

There is still no news on the muscle biopsy that was taken in September.

Please join our family in saying prayers of praise that Zach was able to come home to be with his family and continued prayers for this transition.

Here he is trying to crack a smile. Such a sweetie!



GOING HOME!! (Z is wearing his costume since he came home on Halloween)
He looks so cozy!



Updates and Pictures

I appologize it has been a while since the last update.  Zachary has recovered fully from surgery.  Blair and Keri have not received the results from the biopsy but anticipate hearing something by the end of the week.  There has been little improvement in Zach's muscle tone and movement so they are really hopeful for answers.  He developed a cold after surgery and it took a couple of weeks for him to recover. He was receiving oxygen while he was sick but he is back to breathing on his own again. In researching the cause for Zach's heart rate drops, he was evaluated by an ear, nose, and throat specialist.  They determined he has a condition called Laryngomalacia, which means he has a "floppy" airway/larynx. Treatment for this condition will be decided after Blair and Keri receive biopsy results and have a better understanding of his overall health.  
There is hope of bringing Zach home next week if his breathing and heart rate stay stable. 

Thank you for your continued concern and prayers.
Here are a few updated pictures of our precious Zach....

Little Aggie!

  

Quick Surgery Update

Zachary's surgery went smoothly on Wednesday. His recovery is going very well.  We ask for continued prayers that his heart rate drops be resolved so Blair and Keri can bring him home from the NICU.

Thank you so much for your continued prayers for our sweet Zachary.  We will never be able to express how much it means to our family.

Prayer requests

There have been no significant changes with Zach since the last blog update. 

The purpose of this update is to ask you all to lift Zach up in your prayers this week.  He will be having an invasive surgery this Wednesday the 19th where doctors will be taking a muscle biopsy from his leg for more testing.  A specific diagnosis has still not been confirmed by other testing and Blair and Keri's hope is that they will get more answers from this test regarding Zach's lack of muscle movement.  There is a very broad range of types and severity levels under the Muscular Dystrophy "umbrella" and this test usually provides a better understanding of what to expect.  Zach will also have a couple of other minor procedures while under anesthesia.

Many have asked when Zach may get to come home from this hospital.  Blair and Keri do not know at this time. Zach has accomplished many of the milestones that are necessary to come home, such as maintaining body temperature, feeding, and breathing without assistance. His doctor sounds very hopeful and has discussed the possibility of exiting the NICU in late September or early October.  However, he continues to have heart rate drops and his doctor is trying to determine their cause.

Thank you all for your concern, love, and prayers.


Specific Prayer Requests:

*Doctor's and nurses performing Zach's surgery will make all the best decisions about his health and safety
*Zach's body will respond well to anesthesia and surgery
*Zach's speedy recovery and minimal pain
*Comfort, strength, and peace of mind for Blair and Keri
*The results from this test will provide Blair and Keri clear answers about Zach's diagnosis

Updates and Pictures...

Just a few quick updates from an encouraging week....

First, Zach was moved from his isolette (incubator crib) to an open crib!  This means that Zach's body is now capable of regulating a healthy temperature on its own. Also, he was taken off of all oxygen assistance... He is breathing entirely on his own now!!  Zach has done so well with his feedings, he is now taking all of them by bottle!  He has a little trouble from time to time with his breathing while he is taking a bottle but over all he has been very successful with all of these transitions.

Blair and Keri are able to hold Zach daily and feed him his bottle.  He loves to be swaddled and cuddled by his mommy and daddy! Blair and Keri are really enjoying the opportunity to bond with their little man.  Sydney LOVES her baby brother and gets to visit him daily.  She is such a big helper... baths, diaper changes, temperature checks... She's willing to help with it all! 

As always, Blair and Keri are beyond thankful for all of your prayers, messages, phone calls, and generous offers. They feel so blessed to have such a wonderful support system during this time in their lives and appreciate each and every one of you.

Prayer requests:
*Continued success with bottle feeding
*Eventual success with nursing
*Continued success with breathing
* Blair & Keri may have strength & courage to face each new day



PRECIOUS!(Not much else to say about that)




Zachary's new crib



Daddy and his boy



Daddy with his two blessings



Doc Sydney (Cutie-pie!)

4 Weeks Old...

It has been a little while since the last update.  Zach is 4 weeks old today and will already be a month old this coming Saturday.  His due date wasn’t until September so he is still not considered full term yet.  There have been a lot of small ups and downs (to be expected in the NICU).  Here are some things to get everyone up to speed…

Zachary has made a few positive steps this week. His broken arm is healed and the bandage was removed. He is expected to be off of breathing assistance again by the end of the week.  The nurses had to give him an IV again to administer some medication over the last couple of weeks but that was removed this week. On Tuesday, Zach’s doctor determined that he was ready to try feeding from a bottle.  He took to the bottle like a pro and drank 17ML of milk the first try!!  They will continue working with him until he is taking all feedings from the bottle. 

 On a less positive note, Zachary has been loosely diagnosed with congenital muscular dystrophy. His doctor has been very concerned about his lack of muscle tone & movement. There are still more tests pending that will confirm the diagnosis and determine the severity of his condition.

 Blair and Keri are staying positive overall but need your prayers while they await more answers and information on their baby boy.  They have been very pleased with the care that Zach has been receiving at Scott and White.  At this time, they still do not know how long his NICU stay will be.

Blair and Keri cannot express their appreciation for your many prayers & encouraging messages during this difficult time.  Knowing that so many prayers are going up for their family really helps them get through the difficult days.  

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed , for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

Specific Prayer Requests:

* Zachary's breathing stays strong
* Zach will have continued success with feeding
* Blair & Keri receive knowledge and strength to make the right decision about Zach’s health on a daily basis


Nurse Sydney (The nurses are having so much fun dressing Sydney up)
This is a picture of Sydney after she helped change Zach's diaper



Keri and Zach after his bottle feeding yesterday



Zachary's 2nd Week

Blair and Keri want to again thank you for your continued prayer for Zachary & their family. We are thankful that Blair and Keri received the blood work/test results they were awaiting and all were negative.  This was an encouragement to Blair and Keri. Zach's doctor is concerned about Zach's muscle tone & movement at this time. Tests targeting Zach's muscles will begin this week. The return of these tests could be anywhere from a few weeks to months. Specific prayer requests include:
* Speedy return of muscles tests
* Zach may have comfort while undergoing tests and for continued health improvements
* Blair & Keri may have strength & courage to face each new day
* Patience and understanding for the entire family




Now I have to show off some beautiful artwork that Sydney made to hang next to Zach's hospital bed.
Isn't she just the sweetest???  She loves her baby brother!
(I'm a pretty proud Aunt)

Weekend Updates

First things first…. Mommy and Daddy got to hold their precious baby boy this weekend!!!

 

The doctors approved Blair and Keri to hold Zach for the first time on Saturday and they, of course, jumped on the opportunity. They were elated to have their sweet baby in their arms after a long week and a half (I’m sure it felt more like an eternity) of not being able to hold him!  I was so honored to see Keri hold Zach for the first time and he seemed so happy in his mommy’s arms.  He even let out a little “coo” when hearing her voice. J  And by the looks of the picture, he looks very happy in his daddy’s arms as well!   Sydney has been the best big sister!  She loves to look in on him and has made some beautiful artwork to hang near Zach’s hospital bed.

Since the last update, Zach started having some heart rate drops that were mostly remedied by stimulating him and repositioning him slightly.  Sunday night he had a couple of significant drops in heart rate and his doctor decided to put the oxygen tube back on his nose, which gives him minimal breathing assistance.  Blair and Keri are still awaiting blood work/test results that were taken just after Zach was born.

Blair and Keri want to thank you all so much for your continued thoughts, caring words, generous offers, and most of all your prayers.  They have definitely been feeling the power of your prayers over the past couple of weeks.  We ask that you please continue praying for baby Zach, Blair, Keri, and Sydney.  

I will continue to post updates with any new information.  Thank you! 

Zachary's 1st Week

Blair and Keri want to first thank each and every one of you for your continued prayer, concern, and love.  Nothing has gone unnoticed but they are finding it difficult to have time to answer everyone’s questions about baby Zach.  They asked me (Keri’s sister, Sheila) to start this blog so they can direct everyone here and I will be working with them to keep this site as up to date as possible.

I will start from “the beginning”…




On Wednesday, July 25^th, Keri and Blair went in for their 34 week pregnancy check-up and the doctor had concerns that baby Zach may not be thriving as he should in the womb, so he made the decision to take Keri in for an emergency C-section. 

Zachary Charles Jones was born Wednesday, July 25^th at 6:38 pm. He weighed 3lbs 6oz and is just as handsome as can be!!! J  Keri is healing very well from surgery and feeling good.



Here he is sleeping so peacefully... handsome boy!



This one is from today (after IV was taken out) :-)

Since Zach was 6 weeks early, he was immediately transferred to the NICU (Neonatal Intensive Care Unit) where he receives 24 hour care form nurses.  After he was born he was unable to fully breathe on his own so he was put on a respirator machine that breathed for him.  One day later the doctors determined he was strong enough to breathe with minimal assistance and they took him off the respirator machine.  They placed a tube on his nose to give him minimal assistance with breathing.  This was such a big step! Shortly after birth his doctor realized that his left arm was broken.  Nurses have bandaged and secured his arm and it is in the process of healing.

Over the weekend Zach had a small setback and was put back on the respirator machine and had to be given a blood transfusion.  Zach took very well to the blood transfusion.  As of Wednesday, August 1^st, the respirator was taken back off and he is fully breathing on his own (with NO help from the nasal tube)!  Also, today Zach is having his IV and pic line taken out… This means the only nutrients he is now receiving is breast milk (through his feeding tube).  He has gained a whopping pound in the last week so he is now weighing in at 4lbs 6oz!  This is also amazing news!  

Blair and Keri are still awaiting results from some blood work/tests that were taken after Zach was born.  They are hopeful that Zach’s doctor will return the results to them sometime next week.  At this time there is no indication of how long Zach will stay in the NICU.  There are no other updates at this time.

Blair and Keri want to reiterate their thanks and appreciation for the outpouring of concern and prayer for them during this difficult time.  As much as they want to talk to everyone individually, they just cannot answer all calls, messages, and texts at this time.  They feel that they need to focus every ounce of time/energy on Zach, Sydney, and of course prayer right now.  They cannot express enough how thankful they are for all the offers to bring meals/food but due to being at the hospital so much of the day they unfortunately cannot accept all offers.  They are also still respectfully requesting no visitors at this time.  Thank you so much for your understanding in this matter.   

Many people have asked what specific things they can pray for… 

Please pray about the following:

-For Zach’s body to get stronger everyday

-That he will have continued success with breathing

- For his arm to heal well

- That he will continue to gain weight at a healthy rate

-For encouraging test results next week

-For God’s comfort for Blair and Keri as this is an extremely stressful time for them

-For God’s comfort for Sydney during this confusing and difficult time

-And most of all give thanks for the positive steps already taken in Zach’s health

Philippians 4:6-7

“6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

~~You are encouraged to leave comments on the blog and

Blair and Keri will check them periodically~~