Happy Times

Neuro/Developmental Eval.

John had a neurological screening last week and he passed with flying colors! They were VERY pleased with his development. They said he is not the same baby as his charts suggest. They said with a severe cerebellum bleed like his you typically see signs by now but he isn't showing anything. He is only a little bit delayed with gross motor skills and has low muscle tone in his neck and hips. His adjusted age is 16 weeks(at the time of the screening)and here is what he scored:
Adaptive: 15 weeks, age appropriate
Gross Motor: 12 weeks, delayed
Fine Motor: 16 weeks, age appropriate
Speech & Lang. 20 weeks, age appropriate
Personal Social 18 weeks, age appropriate
Four out of five, not bad! This by all means does not predict his future but it is a good sign. Time will tell. No matter what, we are so proud of him and will love him just the same. The Dr. also told us that they are following a handful of kids to figure out why some kids with severe brain bleeds end up with extensive disabilities and others show very few signs. They may add John to the group because he is doing so well.

We had a pretty uneventful week. His only appointments were Speech and PT. We like these kinds of weeks. Next week we see the GI doctor and will hopefully schedule his G-tube surgery. We just want to get it over and done with. He'll also be weighed then so we'll let you know. My guess is 12 lbs 10 oz and Jamie thinks he'll be 12 lbs 8 oz. We'll see.

Please feel free to leave comments on this site. Eventually we will print this entire blog out for John to have. I am sure he'll love seeing all the people that were rooting for him.

How hard can I pull?

John's favorite game is to grab onto someone's hair and pull as hard as he can. I am constantly unwinding my hair from around his little fingers. Let me tell you, this game is a lot of fun. Here he is playing the game with his Aunt Alli.

Happy Boy

John is such a happy little boy. His smiles melt our heart. The picture with the big smile was taken at 4:00am. The little stinker thought it was funny to pull his feeding tube out.....when it was still going. I don't know how long it was out before he woke up but he was covered in milk from his head to his toes. Of course Jamie had to grab the camera and take advantage of his tube being out.

Montage

Create your own video for free at www.onetruemedia.com

I am trying to add more recent pictures but it's not working. Ok, Ok, I don't really know what I am doing but I'll figure it out.

Houston we have a problem

For those of you who don't know, John has a constipation issue. He is on a medication called Enulose which is basically fiber. As our pediatrician puts it, the amount of enulose he's on should make the entire family go to the bathroom. I never thought I'd be so excited about poop! It's a big deal when John finally goes because it doesn't happen very often (it's getting better though.) Anyhow, John and I were playing today and I had him on my lap facing me. Just as the phone rang I heard an explosion! I figured I'd take the call and then go change his diaper. Well, the phone call was from a principal that I am interviewing with. As we started talking I looked down and saw poop coming out of his diaper onto me!!!!! Lacee, it reminded me of you and Carter at the hospital. Thank goodness I was at home. I couldn't possibly tell this principal, that I am trying to impress, that I had to go because my son had pooped all over me so I finished the conversation and then cleaned us both up. Hey, at least he pooped right?

G-Tube info.

Some of you may be wondering what a G-tube is so here is some information.

Gastric feeding tube
A gastric feeding tube, or "G-tube", is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. The most common type is the percutaneous endoscopic gastrostomy (PEG) tube. It is placed endoscopically: the patient is sedated, and an endoscope is passed through the mouth and esophagus into the stomach. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through abdominal wall. The insertion takes about 20 minutes. After the insertion, the abdominal wound must be covered with sterile dressings until it is healed (about a week). The tube is kept within the stomach by a balloon on its tip (which can be deflated to remove the tube).

Gastrostomy tubes can also be placed in "open" procedures through an incision with direct visualization of the stomach, as well as via laparoscope. Gastric tubes are suitable for long-term use: they last about six months, and can be replaced through an existing passage without an additional endoscopic procedure. The G-tube is useful where there is difficulty with swallowing because of neurologic or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. It is also used when patients are malnourished and cannot take enough food by mouth to maintain their weight. They also can be used in "reverse" to drain stomach contents.

Weekend Update

John must be going through a growing spurt because he did a lot of sleeping this weekend. Friday night he slept from 7:00pm-10:00am. Don't worry we aren't starving our child. He gets a continuous feed through his feeding tube at night. Speaking of which we are hoping to get that out soon. I think we are going to go the G-tube route because he is getting an oral aversion from the discomfort of the tube down his throat. Can you blame him? The tube causes him to have severe reflux. Anytime you move him the tube tickles his throat and makes him cough and gag and then of course throw up. For those of you who don't know what a G-tube is, it's a tube that is surgically placed in his stomach and we can give him all of his nutrients through it. He has a barium swallow study on Aug.7 so we'll know more after that. The only down side is that he'll have to go under for it and there are always risks with any surgery.

John almost got to go to his first D-back game this weekend. Our good friends, the Renneckars, have been so generous with their season tickets. They have the best seats in the house. They are literally on the field. The only thing blocking you from the on deck hitter is the fence. Of course you all know that we aren't supposed to take him anywhere but my thinking was, we aren't sitting close to anyone so he'd be OK. We could just cover him up when we were in the elevator and everything would be fine. Then I starting thinking, we've never taken him anywhere in public. What if he starts crying? What if he needs his diaper changed? What if it was too loud? What if someone touches him.....well, that ones simple, Jamie would be forced to knock them out. Then my paranoia really set in and I starting thinking about all the germs and realized it wasn't such a great idea. So, Jamie and Kurt went and John and I watched the game on TV. I watched, John slept! We'll take him next season.

I better try to get some sleep. John is just like his Dad. He can't sit still for more than a few minutes and he won't take a nap. Needless to say, my days are very busy.

Is there an old man in John's crib?

I swear an old man climbs into John's crib at night because there is no way he can fart that loud. Last night, I was sound asleep and was suddenly woken by a loud noise. I heard Jamie start laughing and realized it was John farting. We both started laughing so hard we shook the bed. I think he takes after his dad, but Jamie blames it on his Grandpa!

Updates

I saved all of the updates that my mom and I sent out.

Dec 17, 2005
Hi all!!!! Jamie and I just wanted to thank all of you for your gifts, cards, and messages. I will try to return calls in April when our little boy is home. It's been a tough few weeks and I know we have a long road ahead of us but with all of your prayers and support, we'll get through this. God doesn't give us anything we can't handle. I can't wait for you all to meet him..........he's perfect and I wouldn't trade him for the world. PLEASE continue to keep him in your prayers. He is having another surgery on Wednesday to relieve bleeding and fluid in his brain. He's a little fighter and we know he's going to pull through.
I hope everyone has a very Merry Christmas.
We love you,
Jamie, Jill, and John Craig

Jan. 2, 2006
Hello everyone!!!!!!!! This sure has been the hardest month of our life............but we made it. He opened his eyes a few weeks ago and seems to look at us when we talk to him. We definitely are not out of the woods yet but we have had a couple GREAT days. We met a Christian couple in the NICU who are here from Georgia.........they had quads (they are triplets now) but they have told us many success stories of children with brain bleeds like John and their little girl Danielle. With all of your prayers and all the specialists we have lined up my hope is that John will be running around this time next year like all other one year olds. Please continue to pray for his brain to heal and not have any long-term effects and for his liver to heal (his liver has an abscess in it and has enlarged so much that it is putting pressure on his heart and lungs.) The Dr.'s think it will heal with time..........lots of time. The plan is to start feeding him towards the end of the week. Also, pray that goes well. He now weighs 2 pounds 6 ounces and should start gaining more weigh as they start to feed him. Like I said in the last e-mail, he's a fighter and he's not going to give up now.
Thank you all again for EVERYTHING you have done for us. We feel so blessed to have so many wonderful friends in our life.
Love,
Jamie & Jill

Jan 24, 2006
Hello dear family and friends. I know I keep repeating myself but we feel so blessed to have you all in our lives. Everyone has gone above and beyond and we can't thank you enough. The support from all of you has been amazing. We have entered a world that we never knew existed but this is what was dealt to us and we are going to run with it and never look back. Our rough road still isn't over but things are definitely looking brighter. The Dr. said it looks like we are in the clear as far as inserting a shunt in his head..........what a blessing. They will do an MRI at the beginning of March to see exactly what part/parts of the brain has been damaged however no Dr. or x-ray is going to tell us the fate of our child. With all of your prayers, we know he will be just fine. He is on full feeds now!!!!! No more IV's. And, he just reached 3lbs last night. He is as sweet as can be and has a personality of his own. I'll try to update again soon........but you know how that goes.
We love you,
Jamie, Jill, and John

Feb 5, 2006
Dear family and friends,
John Craig - cutie patootie, apple of my eye, sweet pea, bundle of love - he's all those and more! No more ventilator or CPAP or IV's. This little miracle child is breathing room air with NO assistance, receiving full breast milk feeds (36 cc every 3 hours) through a tube in his nose, and growing, growing, growing. He's now three pounds and twelve ounces - mammoth in our opinion, but all relative.
He has a full developmental team of therapists (speech, occupational, physical, etc.) working towards sucking and swallowing, tactile enrichment, and massage therapy. I was ready to sign up for the latter, but the NICU nurses assured me that they do not "do big people." With no significant changes in either the brain or the spot on his liver, evolution will determine to what degree or IF John experiences long-term effects from being premature. Curling his toes, grasping, responding to voices - all are positive signs for this little nine-week-old angel.
The talk now is about moving him out of the incubator and into an open crib next week. This would have him reaching two of the three requirements for going home - 1. breath on his own 2. maintain his body temperature 3. eat on his own. Initially we were told to expect a due date (March 17th) homecoming, but optimistically we hope to celebrate earlier. It's torture as a grand mother not being able to hold him and smother him with kisses. From the pictures you will see that I did sneak a few cuddling moments by accident - I put his diaper on too loosely and the bedding became a bit damp and yellow. "Oh shucks, I guess I'll have to hold him while you change the bedding," I said with a smile to the nurse.
As always, thank you for your love, generosity, and prayers. It truly is the littlest things in life that matter the most!
Love, Cindy (Grandma Lindley)


Feb 14, 2006
Hi all! Well, John will be 11 weeks old tomorrow. I can't believe how fast time is going. He is now up to 4 lbs 5 ounces. He is finally out of the incubator and into an open crib. The Dr.'s are getting his discharge papers ready however; it will still probably be close to his due date (March 17th) before he comes home. We feel so fortunate to have all of you in our lives. We thank you again for your continued prayers for him, and for your encouragement to us. It means the world to us, and when things seem particularly crazy, your presence reminds us that we are never alone. May each of you know how appreciative we are of your support, prayers, and love.
Love,
Jamie, Jill, and John

March 11, 2006
Dear family and friends,
Three months, 14 weeks, 101 days - time flies when you're having fun. The word fun can definitely be added to our daily descriptor list. John Craig has successfully been on room air since February 4th, began sleeping in a regular crib on the 6th of February, and today weighed in at a scrapping 6 pounds 1 ounce.
Four weeks ago, John was transferred to the NICU at the main campus of Phoenix Children's Hospital on Thomas Road. It decreased our drive by a whopping one mile but more importantly, the move gave John his own private room. The room is complete with a window, couch, bookshelves filled with Grandma's favorite children's literature, dresser drawers, and it is QUITE. John's move from bed one at McDowell's campus to the Thomas campus was like moving from a tent at the intersection of the 51 & 101 to a suite at the Hilton. He flourishes with the new environment.
Eating has been the most challenging of the three requirements (eating, breathing, and maintaining body temperature) for going home. He sucks and swallows beautifully with no bradycardias but proceeds to fall asleep far short of a full feed, 55 cc every three hours. Apparently, this is common for preemies - breast or bottle-feeding is hard work compared to the feeding tube. Sleep, eat, and not have to work! I hate to be the one to pop his bubble and tell him that he has a few years before reaching retirement.
We ask for prayers once again, as little John undergoes surgery Monday afternoon. He has developed a hernia directly below the incision from his perforation surgery in December. Due to the fact that he will have to be put under and back on the ventilator, the doctors have agreed to a three for the price of one. John Craig will have a MRI on his brain to evaluate the brain bleed, have the hernia repaired, and have his circumcision on Monday. It's a heck of a way to start the week off, but we are confident that he'll bounce back quickly.
There is a real good chance that our little angel could possibly go home within a week after the surgery. He may have to drag the feeding tube with him, but we don't care. He is without a doubt our million, two million, maybe even three million dollar miracle. What a blessing!
I've attached pictures of John with mom, dad, and Uncle Craig. The smiles on their faces say it all. It has been an incredible journey in which all of you played a significant role - from calls, to prayers, to notes, to dinners for the kids. There are no words to completely express our gratitude. However, know that we love each and everyone of you!
Love, Cindy (Grandma Lindley)

March 12, 2006
Dear Friends & Family, Just wanted to give you a quick update on John's status. One hundred and three days have now passed since November 30th, and here’s where things stand… John is now 6 pounds 2 ounces, which looks like a giant compared to his former self, at 1 pound 8 ounces at birth. The Doctors and nurses have finally mentioned the "H" word, and it looks like we may be heading home on our due date.......which is this Friday, March 17th!!!!! We cannot wait to take John home and be a family, without the Doctors, Nurses, monitors, leads, bells, whistles, alarms, and constant chaos of the NICU. John had another eye appointment last week and it looks like he still has Stage 1 ROP (retinopathy of prematurity). ROP has five stages. Stage five being the worst. Dr. North (John's ophthalmologist) thinks there is a 90% chance that the ROP will resolve itself and won’t require surgery. Please pray that he is correct! Tomorrow is a big day. John has another surgery for an incisional hernia that resulted from his previous abdominal surgery. While under anesthesia, he will also have a circumcision and an MRI to gage the extent of his brain bleed. Our prayer is that the surgery is performed quickly without any complications and that he is able to come out of the anesthesia without any setbacks. We know that God is in control of all of the details of everything that John (and we) are going through. Thank you for continued prayers for our family. We will update you again soon.
With Love,
Jamie, Jill, and John


March 14, 2006
Quick update:
I am hopelessly behind on returning calls and emails so thank you all for understanding. The surgery, circumcision, and MRI went well. They rolled him out of the NICU at 12:30pm and he was back in his room by 2:05pm. It was much shorter than we anticipated. The surgeon came by this morning and is very pleased. Things are good except that we have a very sore little boy. We'll keep you updated.
Love,
Jamie & Jill

March 21, 2006
Dear Family and Friends,
The sun is shining brightly this morning, the birds are singing a song of celebration, and John Craig Birtch is at home sleeping in his own cradle !!!!! After one hundred ten days, our little angel exited Phoenix Children's Hospital last night and arrived home about 9:30 PM. If fireworks had been available, I am certain the entire city would have known about John Craig's homecoming.
Weighing 6 pounds 10 ounces and measuring 18 inches in length, he's come a l-o-n-g way! The feeding tube and a monitor came home with him, along with a mound of belongings accumulated over the extended stay. Actually, moving him home was somewhat like moving his mom out of the dorm in college. One little person, yet so much STUFF!
The plan was to program the feeding tube so that John Craig would have a continuous feed over an eight-hour span of time at night. Thus, giving both John and his parents much needed sleep. Perhaps a bit on the cheating side, but ... So much for best laid plans! Jill just called with an SOS. I guess the machine for the feeding tube malfunctioned and the monitor repeatedly went off. Hence, they have officially experienced their first sleepless night with a newborn. One down and many, many more to go! Just wait until they reach the sleepless night when he is seventeen or so.
Home sweet home! There is no better place for our little guy. Now we can focus on his development as we work to stimulate his little brain and assist him in reaching his full potential. Smother him with love, drown him with kisses, and spoil him rotten. John Craig has created a magnificent opportunity for grandma to continue teaching in retirement.
I've said if before, but it can't be said enough - THANK YOU for the continual support and prayers. Each of you makes the world more special just by being in it!
Much love,
Cindy (Grandma Lindley)

March 21, 2006
Hello Friends and Family,
Well 110 days have now past since the birth of our son and..............WE ARE FINALLY HOME!!!!!!!!!!!!! We were discharged from Phoenix Children's Hospital around 9:30pm last night. We couldn't be more excited to be at home as a family. Thank you all for your continued prayers........you helped make our dream come true.
I am going to keep this e-mail short because we officially had our first sleepless night last night:):):) I'll update again soon.
Love,
Jamie, Jill, & John

March 31, 2006
Home Sweet Home!!!
As you can see from the pictures, our John Craig loves the latest routine of life at the Birtch household. Seven pounds and growing! He's also growing to love being held and showered with attention. He readily accepts love from anyone and everyone.
The developmental nurse told us not to worry about spoiling him at this point. The more holding, the better! And I always (almost always) do what I am told.
Love,
Cindy(Grandma Lindley)


May 4, 2006
Dear Family and Friends,
I can't believe John is 5 months old. I would say that time flies when you are having fun but the past 4 months have been the least bit fun. Thank you all for being apart of this journey. As difficult and painful as it has been I would do it all over again for my son. He is our everything and we are so proud to be his parents. The video below is a glimpse of what our past 5 months have been like. I hope you enjoy!
Love always,
Jamie, Jill, & John


May 23, 2006
Dear Family and Friends,
John is officially a big boy now. He weighs 10 pounds and is in the 95th percentile for his weight and 25th percentile for his length. Of course it's charted on a preemie growth chart. He will be 6 months next week however we'll go by his adjusted age (the age he'd be if he were born on his due date-March 17th) for the next two years. So, he's two months old and doing everything a two month old should be doing. The Doctors and we are very pleased with his progress. As much as we'd love to show him off we aren't allowed to take him anywhere until this time next year and then for the next few years we will be in hibernation every winter. I'll keep you updated and send pictures though. I hope everyone is doing well and we hope to talk to you all soon.
Love,
Jamie, Jill, and John

June 19, 2006
I hope all you Dad have had a wonderful Father's Day. John is doing well. He started cooing last week.......I love it! He has also rolled over twice. Every milestone is major to us so we are very excited. Attached are some recent pictures. We took the feeding tube out for the day........of course we had to take lots of pictures. Hope everyone is doing well.
Love,
Jamie, Jill, & John

Imagine.....

I was reading the March of Dimes website and saw these amazing poems that parents had written about their own experiences. So, I thought I'd try to sum up our life and write my own!



Imagine...


Imagine being told you were pregnant after having a miscarriage the month before.

Imagine hearing your baby's heartbeat for the first time.

Imagine being air-vaced to the ER at 24 weeks pregnant , thinking that you have lost your baby.

Imagine being told that you are about to have a C-section, but don't expect your baby to come out crying.

Imagine lying on an operating table feeling helpless because there is nothing you can do to help your baby.

Imagine your baby being born the size of a ruler, weighing a pound and a half.

Imagine your baby being 100% dependent on a machine to live.

Imagine your wedding ring fitting on your baby's arm, loosely.

Imagine not being able to hold your baby for weeks.

Imagine getting a call from the doctor at 3:30am because your baby has an air leak in his lungs.

Imagine looking at your baby , praying to God, that he will live another day.

Imagine not being able to breath every time the phone rings.

Imagine your baby having life or death surgery when he is only 8 days old.

Imagine watching your baby being prepped for surgery, not knowing if you will ever see him alive again.

Imagine hearing that your baby has a grade 4 bi-lateral brain bleed and will have long term disabilities.

Imagine a doctor encouraging you to take your baby off life support because his quality of life is uncertain.

Imagine praying to God that the doctors are wrong.

Imagine loving your baby so much that their diagnoses means nothing to you.

Imagine crying your self to sleep EVERY night.

Imagine having a baby but going home without one.

Imagine what it feels like not knowing if your baby's next breath will be his last.

Imagine going to the mall, too afraid to buy baby clothes, because your not sure that your baby will live to wear them.

Imagine bringing your baby home, but you can't take him anywhere because his immune system is too weak.

Imagine being woken up by the sound of your baby's heart rate monitor going off.

Imagine pumping every 2 hours because you know breast milk is the best thing for your baby.

Imagine the feeling of hopelessness when your baby will not eat.

Imagine having to feed your baby through a feeding tube.

Imagine trying to stay sane while all this has taken place.

Imagine having a micro preemie.

Can you imagine?

Happy Birthday

November 30, 2005 are sweet boy was born. It was the happiest and saddest day of our life. John Craig Birtch was born via c-section at 2:54pm due to a bulging bag and prolapsed cord (water bag and umbilical cord were in my birth canal because of an incompetent cervix.) He let out a tiny cry before he was handed to a team of Neonatologists and level III NICU nurses. He weighed 1 pound 8 ounces (680 grams)and was about 12 inches long. Jamie was able to follow him to the NICU but I had to be wheeled into recover for an hour. Once I got the feeling back in my legs they let me see my baby for the first time. He was so tiny and pink and SOOOOOOOO absolutely beautiful. Today our lives would be changed forever.