Home Sweet Home

Waiting patiently for surgery.


Cuddling with mommy before they came to get him.


Surgery went well.....time to recover. Poor baby.


Feeling good........thanks to the morphine!
Click on the photo to enlarge it and you can see his button (G-tube).


We are home at last. We told you we were going in for two surgeries (G-tube and circumcision) but we ended up with 3! I guess we like the three for the price of one deal. Right before John went into surgery, the surgeon noticed he had a cyst forming on his other scar so he ended up cutting that scar completely out and re-stitched it.

So.......if I would have updated on Monday, I would have used a lot of words I shouldn't have. I am glad I waited! Anyhow, John was taken into surgery around 1:00pm. Before surgery we told the surgeon, the GI doctor (he helped in the surgery), the anesthesiologist, and the nurse, to make sure he had morphine ready to take once he was in recovery. After his last surgery all they gave him was Tylenol. Now you tell me, would Tylenol work for you after having a major surgery? The surgeon wrote the prescription and all was well..........so we thought.

The surgeon came out to get us around 2:00pm. He said everything went really well and we could go see him in recovery. When we got back there he was screaming and crying. A scream we had never heard before. It absolutely broke our hearts. I got to hold him and he finally fell asleep. We waited in recovery for two hours until a room upstairs was available. Finally around 4:00pm we were taken upstairs to our room.......a room we had to share. We have tried so hard to keep him away from germs and now here we were in a hospital full of germs sharing a room with someone else and their family.

Right around the time we got to our room John woke up in a tremendous amount of pain. He was screaming and crying uncontrollably. We told the nurse, who was a complete idiot, to get him his morphine. I think it was her first day of work because she had no idea what she was doing. Now it is 6:00pm and John is in even more pain.........still no morphine or nurse. We were livid and rightfully so. This was exactly what we were trying to prevent. I am sure the entire floor knew how mad we were. We weren't really quite about it.

Finally, a little after 6:00pm another nurse brings in his morphine. I had been holding him so I went to lay him down only to find his blanket drenched in blood. He had kicked his IV out of his leg. It took 3 nurses to get another IV in him and finally at 6:30pm he was given pain medicine. This never should have happened.

On a good note, we had awesome nurses Monday night and Tuesday. By Tuesday afternoon he was back to himself and we were able to come home later that night.

Once again, all is well in the Birtch home. Things are now back to normal and our little man is feeling good.

Resting up

Resting up for the big day.

Surgery Eve

Tomorrow is the big day. We will be checking into Phoenix Children's Hospital at 10:30am but the surgery isn't until 12:30pm. We are more than ready to get this over and done with........so is John. All three of us will be spending the night in the PICU (Pediatric Intensive Care Unit) tomorrow and will hopefully be home sometime on Tuesday...that's the plan. We've heard the PICU is quite different than the NICU (Neonatal Intensive Care Unit)and that we really need to keep on the nurses. Please pray that there are no complications, the surgery is performed carefully, and the recovery is quickly. I'll update as soon as possible.

On another note, I went to Babies-R-Us yesterday and bought a baby scale. Thanks for the idea Lacee. Are you ready for this? Our little 1 pound 8 ounce baby is now 14 pounds 3 ounces. Yes, you heard me right. We can not believe it. Go John!

Lookin Good

If John has to wear this eye patch, he's going to do it in style.

I tried to get the sports patch but they were all out so we settled with the camouflage. He looks good in anything though:)

Arrrrr

John has decided he wants to be a pirate for Halloween instead of Superman. In fact, he started wearing part of his costume today.

When does this roller coaster ride end????? We want off!

So, we went to see the ophthalmologist today because John looked a little cross-eyed. We didn't really think much of it but to our surprise, John will probably be going in for ANOTHER surgery right before Christmas. He has what is called Amblyopia. Amblyopia is a medical term that describes poor visual development. A child with amblyopia has poor visual acuity (clarity or sharpness of vision in one or both eyes). The word comes from the Greek word ambly (dull) and opia (vision). Amblyopia is often referred to as "lazy eye". Of course I called my dad, who is an optometrist, the minute I left the office. He said that this is very common. He expected that John would have to have surgery to correct it. The surgery is out patient and should only take about 10 minutes per eye. He'll have to be put under which always has it's risks. We are going to patch his right eye for an hour a day to see if it will correct itself. However, the Dr. said he is about 90% certain that he will need the surgery and maybe even a couple more after that.

This is just another obstacle John has to overcome. We have no doubt that he'll bounce right back. Life is what you make of it, right????? And, I'd say we have a great life.

Update

John is a rolling machine. He has finally mastered rolling from his tummy to his back. He sleeps on his tummy and will roll onto his back in the middle of the night....numerous times. The only problem is, he can't sleep on his back. So, we have to get up and roll him back over every time. Don't worry we aren't complaining.....he's rolling! Another big milestone. Hooray for John!

Our favorite NICU follow up nurse came over last week to examine John. She was thrilled to see how well he was doing. She thinks he is going to be just fine and IF he does have CP she thinks it will be a mild case. We know he is doing good but it's nice to hear it from someone else every once in awhile. A little reassurance doesn't hurt anyone.

The big surgery day is getting closer. We can't wait to get his NG tube out and see his cute little face without all of the tape on it. Unfortunately while he is under he'll have to get his circumcision re-done. They didn't take enough foreskin off the first time and it doesn't even look like he was circumcised. Poor guy. If it's not one thing, it's another.

When I start feeling down, Jamie reminds me to look around.....there is always someone out there that has it harder than we do. Isn't that the truth? I wouldn't change my life for anything. It's perfect just the way it is.

Can life get any better?

Life is great in the Birtch home. We thank God every day for choosing us to be the parents of this amazing little boy.

Happy Monday!

John answered my question

So, as I mentioned before I am feeling a little uneasy about the decision to insert a G-tube. I know it is the absolute best thing for him but I don't want him to be in any pain. Anyway, Jamie called me into the family room yesterday where he and John were playing. He said they had something to show me. John was sound asleep, tape intact, and the portion of his feeding tube that is supposed to be in his stomach was draped across his face! He managed to get his tiny little finger under the tube and pulled it out. As you can tell by the pictures, we tape him up pretty good because of this. Obviously the tape doesn't cut it anymore. He's ready to get that tube out and he let us know!!!!!

Surgery Scheduled

John's G-tube placement surgery is scheduled for Monday August 28th. The surgery itself should only take 15-20 minutes. He will have to stay over night at the hospital....Yuck! Please pray for us that this is the best decision for John. I am feeling a little uneasy mainly because I don't want my little boy to have to endure anymore pain. He has suffered so much already....more than most of us every will. I now know what my mom meant, "When your kids hurt, you hurt." It breaks my heart to see my little baby in pain. How I wish I could make it all better but I can't. I know he will be better off with the G-tube but it is going to be so painful and I don't want him to suffer anymore. Please pray that the surgery is performed carefully and his recover is quick.

How big is John? Soooooo big!

John is getting so big. The first picture was taken the night we were discharged from the hospital. He weighed 6 pounds 10 ounces. He weighed 13 pounds in the other picture. I remember the days when I couldn't wait for him to weigh 2 pounds!!! I would see 2 and 3 pound babies in the NICU and they seemed enormous compared to John. I couldn't wait for him to be that big and now look at him.

We are seeing the surgeon tomorrow and will hopefully finalize his surgery. I'll update tomorrow about it.

Barium "won't" swallow

As you can tell by the title, the barium swallow didn't go over to well. We have been waiting 3 months for this appointment and for the past month John has decided he doesn't want anything to do with the bottle. He won't even suck on his pacifier anymore. More than likely this aversion was caused by his NG tube. Anyhow, we were told if he wouldn't drink the barium they would put it down a tube. Well, they didn't. So, we still don't have any answers as to why he won't eat. The good news is...he didn't aspirate on the little barium that he did swallow. We will try the barium swallow again once he is eating baby food or is drinking from a sippy cup.

We are excited though because he is almost rolling over. As you can see from the pictures, he is so close. Any day now!

Blessed

GOD IS GOOD!

Take me out to the ball game....

John's already to go to the ball game....if only his mom would let him out of the house! Jamie is a die hard D-back's fan. John's room is filled with autographed balls and bats from just about every D-back player. After hearing John's story, Luis Gonzalez personally signed one of his own bats: "John, You are the real STAR! All my best. Your friend, Luis Gonzalez." Thanks Brian!

At Speech Therapy on Friday John's therapist made a smacking sound with her lips and John copied it. She also stuck out her tongue and he copied her. So, I have been sticking my tongue out at him and he does it!!!!!! Call it coincidence...I don't care, it makes us feel good:):):) To all you full term moms, this may not seem like a big deal but to us preemie moms, it HUGE.

Life is Good!

Heavy Weight Champ

John's growing like a weed. Wow......I really sound like my mom! He now weighs 12 pounds 13 ounces. The GI doctor was very impressed with his weight gain.

We had the G-tube talk and it looks like the surgery will be at the beginning of September. We are meeting with the surgeon next week to discuss everything. This particular surgeon has performed all of his passed surgeries and we are very confident with him even though his beside manner is horrible. Lacee & Rich, we'll be sure to say hi for you:)