Friday, May 25, 2012

A Long Hard Road...

It has been 3months and three days since our last update post on Jordan and A LOT has happened in these past months. So let's start where we left off...

After the last post doctors told us that it was time to take our baby home. We were VERY nervous about this and went though all the training procedures to make sure we were ready to bring our little bundle home. On March 9th around 7pm we brought Jordan home for the first time. His Dad and I were very scared, even cried of frustration a little. But when the sun rose on the next day we began our new life and new routine as a full loving family. Big brother Brian (Bj) enjoyed having his little brother home. They played until they got sleepy.

Watching TV

Playing w/ his blocks


Watching Bj and not wanting to hold his head up

After bath and lotion massage...KNOCKED OUT!!!

He REALLY didn't want to hold his head up so we thought to improvise....I don't know why we didn't just put his brother's neck support thingy on him, but it worked

Sooooo, this last picture was the last one I took before all hell broke loose...at about 10:30am, Jordan's nurse noticed that he was a little agitated and would not rest easy like he normally would. He also started to retract (breathing really hard). We instantly called 911 and was rushed to the hospital. Jordan was placed back on the breathing machine. He was diagnosed with pneumonia.

At first it seemed as if he was doing okay while fighting the sickness, but then everything turned for the worst in mid-April we got a phone call at 11pm saying we needed to get to the hospital ASAP. When we arrived, the staff was working so hard on Jordan. It turns out that the pneumonia got so bad that it made his left lung collapse and with his heart condition this was not good. He could not keep his SATS up without RT giving him oxygen. Doctors and nurses worked on him for four hours before he became stable. Through God's grace Jordan defeated all odds and came through but not without a big setback...because of the lung collapsing, it caused a lot of  fluid to build up in his lung and there is also a great amount of scar tissue from previous procedures that made it difficult to get to the fluid so that it could be drained. Dr. Goldberg did what he could by Jordan's bedside to get as much fluid as he could out and what little he did helped. But Jordan is still damaged greatly. He then received a trach, which helped him at first but is not doing as great of a job that we intended. Due to this rigorous incident, Jordan is not a candidate for Step 2 of his heart procedures which is known as the Glenn. In order to receive this surgery, Jordan has to have "normal" working lungs and that's not where we are at this point. Hopefully his little body can heal his lungs and go down in pressure in time when his body and heart are ready for that change. As of right now, doctors are stuck and do not know what his future will be. If he stays the way he is currently, then he will not survive.

CV moved him to a step down floor called IMCU where he receives the best care to get him stable and ready to come home. I can say he has been all smiles since he has moved. The staff is great and very loving of him. We know that God has the last say on what will or will not be for Jordan...Let us hold on to that hope that we have for him and pray that he can show get through this battle...We love our little heart warrior...J-Man!!!


Here are current pictures an a special video of our precious baby boy...





video


Tuesday, February 21, 2012

Surprise, Surprise....

Well, we have had a lot going on since Valentine's Day...Okay Valentines day was fun. Jordan got his first Valentine's from a wonderful church group (who I will be sure to thank and mention as soon as I find out who they are). Due to his central and artery lines being in on this day he could not put on any clothes. So we got some red socks. Jordan LOVED them!!! He even practiced lifting his foot to see the bright color.


His first Valentine's Day Cards...Aaaw!
Window Decoration

Jordan and his RED sock
Hospital Door  Decorations

Jordan lifting his foot to see it

Brian Jr.'s V-day card to the family

The inside of Bj's card


In other news, the second esophagram was completed Monday (2/20/12) at 1:15pm. Results were GREAT!!! His small opening showed that it was healing, so Dr. Huang said that she would let him start feeding by mouth this week. She even stated that during the beginning of the test, he was to swallow the meds that is needed to see down the esophagus and he got most of it down. So that was good to know. It seems as if he is the most happiest child ever. He loves to play and smile. He is basically SPOILED...what are we going to do, LOL! He has a right to be though. Jordan just amazes us everyday. It's such a highlight in me and his father's day to see him do the simplest things that most would take for granted. He makes us laugh so much.
Leg DOWN!!!


Leg UP!!!
Our baby is doing great. He is currently off ALL IV's and oxygen. He is reaching and playing with his toys. He is also starting to sit up with head control and loves to swing (thank goodness).  Continue to pray for our little HEART WARRIOR as he continues UP his river of recovery.

video


Oh yea, check out our little man with no tubes!!!

Grown Man Sleeping

Words can't be defined by this look, LOL!

Tuesday, February 14, 2012

Esophagram Update!!!

As everyone knows Jordan underwent a small procedure called an Esophagram yesterday. Doctor Huang stated that the esophagus is still intact but there is a small opening where sutures were administered. Luckily, where the hole is, it is contained and he is on antibiotics for the risk of infection. Dr. Huang and Dr. Green stated that hopefully through normal healing the whole will close and they will complete another test in about 2 weeks.

Currently Jordan was extubated and is resting well. Pray for our J-man so that the whole will heal and he can continue is path of recovery to come on home.

Sunday, February 12, 2012

5 MONTHS OLD!!!

Today, our J-man is FIVE WHOLE MONTHS OLD!!! And what better way to bring in the day by pulling out his breathing tube. Yes he did!!! So let's recap what has happened in the past week...

Since our last post, Jordan was preparing for his next big sugery for his Esphogeal Atresia. This is where his esophagus will be connected back together. He recieved some therapy to work on his cognitive skills. This was SO fun to watch. Check him out...
video

Along with therapy, we all made sure that he rested. His big brother Brian Jr. also got a chance to see him and they bonded so well. Brian gave his little brother kisses and played with him with the Valentines Hearts that we decorated his room with.

On the morning of his surgery we all got to give him hugs and kisses and told him that we love him. Daddy gave him the usual pep talk that they have and kisses to go along with. I held him until it was time for him to leave the room and sang to him with love and kisses to follow. We all told him to do good and we'll see him when he comes back.  Brian Jr.'s exact words were, "Bye Jordan. See you later. I love you!!!" And they wheeled him off at 8:15am. The surgery was preformed by Dr. Huang and Dr. Green at LeBonheur Children's Hospital. Surgery started at 9:42am and lasted until 5:05pm. The surgery took a bit longer than expected due to scar tissue and making sure that they were as careful and accurate as possible for complete success. And he did great during the entire procedure. Alas, he came back...












...With no NG tube in his nose or mouth and no need for oral suctioning



Two days later he was extubated, but only to return back on the vent because he was really working too hard trying to breath on his own with his new connected esophagus.
Day 2: Looking Good!!!
Jordan is now resting comfortably. He is expected to go to radiology on Monday, February 13 to receive an esophagram. This is where they will stick a probe down his throat with dye to make sure there is no leakage where his sutures are connected and that they are healing properly. If all is well, Jordan will be extubated no later than Tuesday and speech therapy will start with feeding a little by mouth for the first time. He will also continue to receive majority of his feedings through his G-tube.

Thanks to everyone that have been sending prayers to him. God is really working miracles. Here are some pics of him a couple of days before surgery and our gift from our friend Jackie...

Big Eyes and NG tube in nose

Love this pic!!!

Check out my shoes world!!!

Grown man sleeping, lol

Yey, our stationary!!! Great for cognitive skills, THANKS JACKIE!!!

Wednesday, February 1, 2012

Snuggle Time

Today was snuggle day!!! Jordan enjoyed his self in my lap all day. He also received PT(physical therapy). Our baby is learning to hold his head up. I loves to hold his arms up and bat at items. He also has found his hands and loves to gnaw and nibble on his thumb, too cute:) His new thing is watching television. Sprout is his fav and the movie Cars.

On a medical note, Jordan is doing very well. He is maintaining his SATS. His heart rate is great. He has switched oxygen flows to a less invasive one, which is VERY good. He is also scheduled to get his esophagus repaired on Monday 7am sharp so please keep him in your prayers. The sooner this surgery is done, the sooner he will be home. Can you say EXCITED!?!?

Please keep Baby J in your prayers as he takes his journey up the river of recovery...

Snuggled w/ Mommy

Aaaawww, I love it!

I don't wanna....

The leave me alone look







Friday, January 27, 2012

All Smiles

Today was a day of ALL smiles!!!! We got to have Mommy and Daddy time. I actually got to hold him for a couple of hours. It has been a little while since we had this type of bonding. All our wonderful nurses (Julie, Susannah, Anna, & Sarah) came in to join us with songs (Justin Bieber mostly...thanks Anna!!!) and dancing (Anna mostly...love you Anna!!!). He gave all smiles to all of his nurses, but Mommy only got the "smirk," LOL. But you know what...I will take my smirk and roll with it. Jordan also got a chance to wear his beautiful hospital gown donated to us by the Sisters by Heart Foundation. Check him out....




Well, on another note, Jordan reached his feeding goal today of 29 cc and he will have an oil dietary supplement added tomorrow so that he can get off of his lipid meds. He also recieved the last of his anibiotics today at 4pm from his sternum procedure. So no meds going through IV's, everything he gets now is through his g-tube.

We also had a funny incident that occured today. I think the nurses could tell I'm a tad bit rusty when it came to calming my baby. Jordan was sleepy and irritated, daddy and I tried to get him swaddled and bundled but nothing was working. Honestly, I am still afaid to tend to him sometimes becuase he is a little more fragile than any other baby. Daddy had to step in and finish, then Julie made the final touches to keep him cozy. He fell asleep right after. Guess I better get over this fear REALLY soon because Jordan should be home sometime in March. Yay!!!!

I also want to take this moment to thank my partner, my friend, my EVERYTHING...Brian. Talk about a WONDERFUL father. He has been my rock that helps me get through this tough time and I honestly don't know what I would do without him. He's there whenever I want to talk or go spend extra time with Jordan whenever possible. He makes sure our Eldest son (Brian Jr.) is taken care of when unexpected things come up. He's just been there and I love him so much. So happy that I have these three wonderful men in my life.

Brian Sr. and Brian Jr. having story time



Jordan Man!!!

Daddy and Jordan



  Here is Daddy and Jordan's video...
video

Wednesday, January 25, 2012

This Kid is AWSOME!!!

Well, we are still resting up. We actually received news from Dr. Green with general surgery that they decided to go ahead with the procedure to fix his esophagus around the first week of February. So cross your fingers that the plan still stays into play.

Other than that Baby Jordan is just being his little feisty self. We actually got some belly time yesterday which he LOVES and enjoys a lot.
Good Morning

This is A LOT of hair...over an inch long!!!

Sooo Cute!!!

Knocked out :)
He actually slept on his belly for a while and woke up only to get his tush cleaned, lol. Also, you can tell he is starting to come into his own. He is starting to watch TV. We watch Transformers yesterday until we fell asleep. This morning, his nurse said that he was watching "Fresh Prince"  but was about to let him tune into the Sprout Network. We are still working on him holding up his head and he already tries to push up on his arms by his self. So small little steps of progress. I say he can take his time, he has already been through so much. He is such a great baby and a blessing to have. WE LOVE YOU JORDAN!!!

video

Monday, January 23, 2012

Resting

Today was a day for resting. Jordan has had a rough couple of days. He had to go back to the OR early Thursday morning due to his sternum wires detaching. He is back on the breathing machine but is expected to be extubated on tomorrow morning. He has been asleep and resting all weekend. As they say, sleep is the best medicine. Let's continue to pray for my little man. And to keep spirits high, I want to share with you a video that makes me smile every waking minute...
video

Friday, January 20, 2012

Jordan's River


Jordan Christopher Perry's was born on September 12, 2011 at 10:30am. He was 5lbs 7.5oz. and 18 inches long. His parents names are Brian Perry and Nastasia Dangerfield. And he has a big brother named Brian Perry, Jr. 
As beautiful as he is, he is very stubborn and does not like to be touch by anyone except for Mommy and Daddy. He is a very strong baby and very observant of everything that goes on around him.

But the very beginning of Jordan's river actually began on May 9, 2011. This was the day that I not only found out the sex of my precious baby boy, but how there were issues with his heart. So you can say it was the best/worst day. A couple of days later we went to a high risk specialist. They confirmed the baby had a congenital heart defect. Talk about the world stopping. Everything after those words were blanked out and I could not do anything but cry.  I was told everything from possible miscarriages, mental defects, and even options of abortions, but I never let any of it cross my mind ONCE. It kind of dawned on me that I needed to make sure that I did everything I could to help our precious baby so that he could survive. No matter how much in debt we get or how hard it would be we would do EVERYTHING we could to give our son a life he deserved. Since that eye opening day he has showed us how much he is willing to fight to be here.

After all the heartbreak and emotions you go through trying gain as much info as you can and trying and make sense of everything so that you can do what is BEST for the both of you, there is where more complications came for us...I started to have anxiety attacks, loosing sleep...basically stressed. A month after finding out about the baby's condition, I started to feel weak and really tired. I went to the doctor and she diagnosed me with gestational diabetes. I also started to have chest issues and was diagnosed with a heart murmur (this was not a big deal due to it being common that women have murmurs while pregnant). Because of the diabetes and high fluid levels, Jordan decided he wanted to make an early entrance at 31 weeks. I was then placed on hospital bed rest.
I was on hospitalized bed rest for one month and sent home for 2 1/2 weeks. Despite all odds of doctors saying I wasn't going to be able to hold him full term...I SURE DID DO IT, LOL!!!
Daddy making fun of my huge belly


September 12, 2011 C-section Day!!!


At 37 weeks and 1 day on September 12th 2011 I gave birth by c-section to Jordan and it was one of the happiest days of our life.

Jordan was born with a heart condition called Hypo-plastic Left Heart Syndrome where the left side of his heart is under developed. He also has another heart condition called Total Veins, where veins that were suppose to be attached to vessels of the heart were attached to a different area of the body. In Jordan's case, his veins were attached to his liver. Lastly, he has another condition called Esophageal Astresia. This is where the part of the esophagus that leads to the stomach is not attached to where food can be digested.

Because of this condition, Jordan has a G-Tube to receive his feedings.
Jordan needs your support through prayer. Miracles happen everyday...Let's pray he's next in line.
Jordan's scheduled heart surgery for the Total Veins procedure is September 19th. His follow-up surgery called the Norwood Procedure is scheduled for January 3, 2012. He has to have two other heart procedures that will follow called the Glenn (Scheduled for Mid Summer) and the Fontan (Scheduled for age 2 or 3). His Esophageal Atresia procedure is scheduled for February 16, 2012.

 2 Corinthians 4:16 Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.
Let's pray that the hands who leads these operation will heal our baby's heart.