CALLING ALL SUPER HEROS: Avery Turns 1!

I turned 1! A lot of doctors and specialist said I wouldn’t make it this far so this was a HUGE deal! I am happy and more alive then ever before!

Avery. Daddy. Mommy. Genesis (AKA) big sista

“Me and my family!”

Capes for the photo booth

Masks and word bubble for the photo booth

backdrop

coloring corner

Custom water bottles

My Super cool birthday cake! I can’t blow out candles so I opted for awesome cake toppers!

Power up fruit cups

“Oh, my Super power? I’m indestructible”

Coloring contest

The Botero’s

The Helligar’s

Titi and Uncle Bobby

Grandma and Kierstien

Erika, Piero, Nick

My friends Emery and Aiden

My Cousins

More Cousins

Don’t forget the cousin on the way! Hannah!

My friends Sarah and Andrea

6 milestones for 6 months

My nephew has made it to be 6 months old!  I was moving the weekend he turned 6 months and around that time he was just getting home from the hospital visits from his random swelling and allergic reactions. So even though I am celebrating a little late, I would like to celebrate by sharing 6 of Avery’s milestones. He went home to FL with hospice and just to think here we are a few months later and the little guy is soaring! He has been off of hospice home health for over a month. Celebrate Avery’s milestones with us!

He is growing and getting chunky

He is starting to suck

He rolls from his back to his tummy

His brain development is improving consistently

He recovered well from his G tube surgery {the tube is no longer through his nose but through his tummy}

He is ALIVE

So I close out this post with a simple. Thank you!!!! Thank you all who have carried Avery in your prayers and hearts. Thank you Jesus for your faithfulness to your promises. From our entire family, My sister Jennifer, her husband Omy, My parents, Genesis, and me and Adam. We thank you all!

Continue to keep Avery in your prayers because they are working! His allergy test results came back and he has been diagnosed with an allergy to “mammal” milk. My sister is in a tough place considering she has been giving him her milk and he has yet to have a side effect. He has been back on her milk for about 2 weeks. They are telling her its not safe because he is in danger of going into anaphylactic shock. Which can lead to death. I believe Avery has been healed from this allergy! Keep praying for this little warrior! Thanks guys!

Avery is comming home with hospice

Me holding Avery for the first time! 09.19.11

So I know its been forever since my last post about Avery. Things have been real crazy around here.

I left off talking about the ups and downs and man are we in a “down” moment right now. Avery got a severe infection after his second shunt placement (about 2 1/2 weeks ago). The infection nearly took his life. They had told my sister and her husband that they had to do a flushing treatment of his ventricles and that one of two things would happen. He wouldn’t make it through the process or if he came out of it, he would be in a vegetable state for the rest of his life. He was then put on life support for over 2 weeks. The poor guy has undergone over 5 surgeries in the 2 months of his precious little life. But yet he always seems to pull through and he did!

Avery was taken off of life support a little less than a week ago and he is breathing on his own. This alone left the doctors in shock. One nurse approached my sister and said, “He is truly a miracle baby.” The infection attacked the part of Avery’s brain that communicates with his heart and his lungs to operate. He struggled at first but sure enough he began to breathe. Now going back to the part where I told you the doctors said Avery would be in a vegetable state. Surprisingly he’s not. But we did find out today that he is showing strong signs of blindness, deafness, and he is hypersensitive to touch. His nervous system is severely damaged. The doctors described it as pins and needles every time he moves or is handled by anyone. He seems to not be as sensitive with pressure (more of a hands on then a gentle stroke). Avery is on morpheme for this and will be proscribed another drug for the pain when he is sent home.

So about hospice. Avery is scheduled to come home on Monday September 26th (THIS UPCOMING MONDAY!). Jennifer and Omy are in need of a lot of things for this little guy. We are happy to bring him home and love on him but it’s not going to be easy. They are currently learning how to care for him. Just to give you an idea, they will need to suction his mouth every 20 min (he has trouble swallowing his saliva) or he can aspirate(inhale fluid into the bronchi and lungs which can cause suffocation).  He is being fed through a tub they have to put through his nose (which needs to be changed out once a week, I believe) and he is very sensitive to movement. Not even to mention they have a high-strung 3-year-old. Pray for peace and wisdom for the Cabrera family and if you live in the area I encourage you to offer services (cleaning, cooking, childcare etc.) to them as well.

We believe in a higher power, the blood of Jesus that is just as powerful today as it was then. At the sound of our voice the Lord could heal Avery or better yet take away his pain and suffering. We are on this journey as the Lord leads us in his perfect will for this little one. We strongly believe that even though his physical body is here with us that the Lord is with him in the spirit taking away the pain and suffering and comforting Avery even though his “flesh” doesn’t seem to be comforted. This is our hope. That Jesus is really along side with us every step of the way in this entire situation.

Jennifer is registered at BabiesRus

Things Jenny needs ASAP for Avery:

Mittens
Front snap shirts (under the Nile has affordable ones)
Thermal Pants
Warm shoes/socks
Pajamas with snap buttons

Katequinnorganics.com
Underthenile.com
Sckoon.com
These websites have kimono style clothes from newborn and beyond. Because of how often I will have to do “assessments”, these style shirts work best with separate bottoms.

One step forward then and it feels like three back….

Avery with his stitches out! 8.8.11

 

Today they are going to be doing some x-rays of Avery’s stomach. He has been having residuals and they have come to a stand still as far as increasing his feeding. I personally think they need to give the little guy some time to catch up. They are going to have the “tummy” doctor come in today and decide if he needs a feeding tube inserted right into his stomach. He has been showing signs of sucking but to them not good enough progress but yet he is progressing each day.  I feel like the doctors want him out ASAP and aren’t giving him enough time to start sucking so the answer would be surgery of course.  Jenn is having some what of a hard time with all this and is just not happy seeing her baby suffer. I mean, who really would be?

Avery has also been throwing these tantrums…. His heart rate has reaches over 215. (the little monitors start sounding off and blinking red…pretty scary) They say he is ultra sensitive to light and sound because certain parts of his brain are missing so it heightens his senses and as most of you know Genesis is the loudest rambunctious kid you’ve met so we’re not sure how this will play out when he finally does come home, which will be another month after his feeding tube procedure. So visiting Avery while I’m at work has been very tough on my sister. And Genesis having a new baby brother with Special needs, AKA needs ALL of mommy’s attention, has been very emotionally hard for her. I believe God wants to finish the work that he started in Avery and I feel like it’s easy to say “he lived. that’s awesome. amen.” but its not over! Avery needs the healing power of Jesus and he needs it soon! He doesn’t deserve to suffer and Lord God, Creator of all things, wants him made whole!

UPDATE: Avery! Your so strong!

Avery 2.5 weeks old 8.3.11

So here is the update that you have all been patiently waiting,asking,emailing,calling,texting,asking,waiting for. =P

After Avery’s surgery he had fluid start to fill up in his belly due to the breathing tube puncturing the stomach lining. When this happened they had to put a vacuum device in through his mouth into his tummy to get it all out. In the mean time Jenn wasn’t able to do the oral therapy so it was kinda like taking a few steps back. This went on for a few days. They were filling up vile after vile with the fluid. He finally normalized and they began feedings again. Now remember, Avery still hasn’t developed a sucking reflex. He is being fed by a tube that goes through the nose/mouth into his belly. He has been successfully eating  up to 45ml’s with no residuals! They say at the rate he’s going he will be caught up (taking in 2 ounces) by next week. Jennifer also got a good look at his recent cat scan and it showed tremendous development of his brain tissue. Still no straight answers on how developed but if brain tissue is expanding that means good things are happening up there in that squishy little head of his. Jenn and Omy are going to start taking discharging classes along with CPR and some other basic “bringing home baby” classes. They say Avery can come home as soon as 3 weeks!

Tomorrow is a big day for the little guy. They will be removing his stitches from both surgeries and also his pik IV. All he will have left is his feeding tube. Before they discharge him the want him to get his sucking reflex in full action. His new therapy is pretty much genius! They take a pacifying machine that pulses in his mouth while he is being feed. This way, he can register that the oral stimulation = Food.

I am still in awe of the marvelous work that the Lord has done in this little guy. I still think back to that day where the doctors said he wouldn’t live and here he is! Here is his lil’ 2.5week timeline followed up by some amazing dreams that two of my best friends have had about Avery’s healing.

First up is Alexia’s dream!

My dream about Avery – July 2011

The dream started off with Jenny opening her apartment door to let Christina and I
come in. We were there to spend time with Jenny and check in on Avery. Avery
looked about the age he is now, but he was at home in the “Clear Case” instead of the
hospital. Jenny wanted to start cooking dinner so she asked me to hold on to the end
of Avery’s tube (the tube from his side that was letting all the fluid leak out). While
Jenny and Christina were talking away and cooking, I remember just looking at
Avery and he opened his eyes and just stared so deep into mine. Then, I notice the
fluid from the tube was pouring so fast like pouring out a full water bottle, instead of
just dripping out. I began to freak out because I remember Christina telling me (in
real life, not the dream) that if Avery’s fluid comes out too fast, his skull could
collapse. But, I was too nervous and afraid to tell Jenny or Christina. So I just
pinched the end of the tube with my fingers to stop the fluid from coming out. Then
Jenny’s phone rang and she talked on the phone for a bit. After she hung up she told
me that Avery’s doctor just called and said it’s time for the fluid to start coming out
really fast and that it is ok. So I released my fingers from the tube and the fluid
poured, and poured, and poured out so fast. Then all of a sudden, as the fluid was
pouring out, Avery started moving his arms around trying to pick up the toy that
was lying next to his side. He turned his whole body to the side and picked up the
toy and started playing with it. He played with it with his hands and also chewed on
it with his mouth. Then immediately the scene changed. Avery was around the age
of 1 and he had gotten into the food that Jenny was cooking. Jenny was laughing at
him because he had food all over his face and his clothes. She helped him walk over
to the bathroom to wash his hands. (He was not able to walk fully by himself, but it
seemed like he was learning to walk). I then shouted and said to Jenny, “Look at
Avery! He is playing with his toys and walking around! He is fine! He is perfect!”
Jenny then laughed as she was washing his face off and said, “I know! Isn’t it
amazing!” And then I woke up.

….and here’s Heather’s =)

Avery was being released from the hospital, and was around 9 months old. You facetimed me so I could see how good he was doing. He was sitting up all on his own and clapping his hands and laughing as you feed him baby food. He looked completely well, he was chubby with HUGE brown eyes, and everything about his face looked normal. You started to cry, and I asked you what was wrong, you said look at his feet look at his feet, and pointed the phone down and showed me his feet. They were sorta twisted. I was like praise God, that is all that he has left to overcome! He was a whole mind, his brain is whole, he is normal, he is whole! He can already crawl and he will walk too! (and I saw him walking on his feet in my mind) then I woke up!

Just thought I would share, feel free to leave a comment on what you may think the Lord is speaking through these dreams. The dreams pretty much speak for them selves but just encase you have any incite feel free to say so!

Update from Omy about the 2nd Surgery

Here is the update from Omy:

Hey there Praying Family,
Here is a quick update on Our Little Big man Avery. He is out of surgury,where his shunt drain system was relocated. He tolerated very well and the doctor saw no visual signs of infection and the labs so far confirm this. His swelling is slowly decreasibg. Thank you all for your continual prayers over his life. We ask that the prayers for a creative medical for a “new,complete,whole brain with NO brain defect or developmental problems come forth in the name above all names Jesus.
Much love,
Cabrera Family

EMERGENCY PRAYER NEEDED

This is a text i just received from my sister:

Averys red blood cell count dropped so they have to do a blood transfusion. They found blood mixed with the spinal fluid in his brain. He has surgery scheduled for 12 today bc the shunt is more on his dandy walker cyst then it is in the proper ventricle (a ct scan showed that this morning). There is risk of infection with the transfusion. Also pray that their is no bleeding in his brain.

Baby Avery: the past few days…

Avery with his new IV at the top of his head. They have pricked him a number of times but the IV’s keep going bad.

Just to give you guys an update, Avery has been showing positive signs of sucking with the oral therapy treatments he has been getting. Please continue to pray about this… He also has been digesting most of his food and going number two! He is still having some trouble with this but it seems he is getting the hang of it. REMINDER: He is being fed through a feeding tube through the nose and into the tummy. The issues with his sucking reflex makes him unable to feed orally.

His surgery incision in the back of his head has been leaking which isn’t good. It leaked through the night last night and a little today. The made a call to the neurologist and he told the nurses if it continues to happen that they may need to go in and adjust the shunt with another surgery. This can lead to infection so they are needing to keep a close eye on it.   Another surgery is the last thing we want so pray that the fluid drains properly through the shunt and not through the incision. Also pray that the nurses handling him through out the night would be lead in wisdom and knowledge from the Holy spirit. Some nurses are different from others. Last night Jenn & Omy didn’t feel peace about the nurse that took care of him. They said she was handling him around his incision a little rough while giving him a bath. Which leads us to the thought maybe that’s why it was leaking through out the night.  He used his lungs quite a bit today and it was awesome to hear him cry. I know it was because he was in pain do to the leaking but it use to be little grunts and now its more of a ‘waaaaaa!’ This is a good sign of strength. His one eye that has been swollen shut for about a week was starting to open as we talked to him.

Thanks again for praying!

Baby Avery God is your healer, He is your strength

Mommy’s second time holding Avery. Day 2 after surgery.

To all who have kept baby Avery in your prayers and to those whose hearts have been heavily burdened,

As most of you know, Avery was born Last Friday the 15th at 9:30pm. I can’t believe it’s almost been a WHOLE week! Despite being born with hydrocephalus, he came out with strong lungs and a healthy heart. I have been so overjoyed and to anyone who asks about his status (and even those who don’t) I go on and on for at least 20 minutes telling them of the good things the Lord has done for Avery. I previously posted a little bit about Avery’s testimony and how he has proved the doctors in Orlando wrong as far as them saying he wouldn’t live outside of the womb.

Moving forward, Avery has been cranky since his surgery. Every time my sister shows up to the hospital he is crying. She has been singing to him and that seems to ease the pain but when she leaves he starts right up again. As if he knows mommy isn’t around to comfort him and the only other hands that touch him prick him with needles and move him around into uncomfortable positions that he doesn’t like. Today Jenn thought about the fact that she hasn’t shown him joy but rather just tries to comfort him when ever she’s around. So today she was smiling and talking to him and holding his hand for at least 45 minutes. In these 45 minutes my sister began to feel hope as her son gazed into her eyes the whole time she spoke kindly to him. She has only held him twice since he has been born and with a toddler she has been limited to seeing him 1-2 times a day for about 2 hours at a time. So keep her in your prayers and continue to ask the Lord for strength and comfort for her mind, soul, and body.

Jenn received a call today from Avery’s neurologist and the geneticist shortly after she had left the hospital. They began to tell her the news that Avery’s brain stem is missing some parts and that his cerebellum is severely underdeveloped. The told her it is obvious that its enough to have his heart beat and his lungs strong but other than that they aren’t sure he will do much else. They also found a Dandy-Walker cyst on the back of his brain. Follow the link to find out more about Dandy-Walker syndrome.  The only update I have on his brain is that the back isn’t looking so good. We will find out more about the brain after the MRI which has been rescheduled for next week. This way his incision has more time to heal. Pray that in the next few days leading up to the MRI that the Lord will do creative miracles in Avery’s head and that what ever parts are missing would suddenly appear!

As far as feeding goes, Jennifer is doing great at pumping but Avery has not been able to hold it down. Right now they have a tube through his mouth and into his belly but he isn’t digesting the milk. He spits it back up each time after about an hour or so. His spit up also has a green substance in it which isn’t good either. Not sure what it means but the doctors haven’t made that clear either. He still has no sucking reflex and the specialist says it doesn’t look like he will develop one. They have plans on doing some exercises with him to try to encourage suckling. They have him on IV’s so he is getting his electrolytes and vitamins (they have had a hard time keeping it in and have pricked him in the head twice and even had it hooked up to his forehead for a bit) but if he isn’t able to hold down the milk they will have to insert a feeding tube into his intestines. They have plans on working with him until it is absolutely necessary to do so. Please pray that the lord would heal Avery’s nerve system and that his mouth would begin to do what it was made to do.

The doctors began to give their speech on how they don’t know how much longer Avery will live and if he will ever walk or talk and that surely he will have neurological issues and epilepsy. But we know regardless of what the doctors say, we will believe that Jesus desires to make Avery whole and he is the author of life. So we believe that he will finish healing Avery!

Avery 2 days old. The day before his surgery. I was telling him how strong he is =)