Doctor B says he looks great!

One test down and one more (MRI)to go! The great news is that today's esophagram showed no stricture or narrowing of the esophagus at the surgery site. Dr. Barnhart (his surgeon who preformed the TEF/EA repair...seen in pic with Benjamin at his appointment today) said Benjamin looked great and had even gained more weight than expected at this point. Benjamin weighed in at 9 pounds and four ounces (with a diaper and a tummy filled with Barium from his test...so he probably is right at 9 pounds or so...which is amazing!)and was about 22 1/4" long.

We asked Dr. Barnhart about future issues with his esophagus and he said since it looks good now the chance of narrowing in the future is only slight. We will go back for a checkup in six weeks at Children's.

We also asked for more information on what they will be looking for in the MRI on Thursday. Dr. B explained they are looking for any indication that Benjamin has a tethered spine which is very common in the group of anomalies associated with TEF/EA. We asked what the worst case scenario would be with a tethered spine. It would mean a surgery done by the pediatric neurosurgeon to release the pressure to insure that the spine would grow at a normal rate. If this was not done there would be issues in the future with mobility, ect. Dr. B insured us this surgery is an uncomplicated one as far as neurosurgeons are concerned and would mean a couple of days in the hospital. Definitely not as big a deal as the first surgery he had to repair the TEF. So it helps to know that the MRI (and putting him to sleep/venting him) is very necessary and that even if he has a tethered spine we know it can be fixed. Of coarse there are always possible complications...so we are just praying the MRI is clean and that we will not need to have any more procedures or surgeries.

We will be heading to Children's at 5:30 a.m. this Thursday to check in for the MRI. Since Benjamin is so small they will be venting him in the operating room and then will do an MRI that will take about 30 minutes. He should be asleep for about an hour or so. We hope to have the results Friday from the neurosurgeon.

Thanks to everyone for their continued prayers we will definitely update after we receive the results from the MRI.

Four weeks old!

Benjamin Grant is four weeks old today! He is doing really well and at his doctor's appointment this week he weighed in at 8 pounds 6 ounces (up from his birth weight of 6 pounds 15 ounces)! We are so thankful that he is growing and thriving. He is really aware and loves to stare at all the fans in the house and at our faces. He also gets really big eyes when his brother B leans in to kiss him on the forehead. Barrett is adjusting slowly to our new family and struggles to be in charge of whatever he can (which of coarse is partly because he is two). We have ventured out a bit this week and took Barrett and Benjamin to the Zoo on Sunday (Benjamin is in the sling if you wonder where he is in the picture of the tractor). We also went out to lunch on Sunday with our friends Bill and Cindy and both boys did really well.

Next week is a big, big week for us as we head back to Children's Hospital for a week of tests. On Tuesday he will have a second Esophagram to check for any stricture in his esophagus. On Thursday he will have to be put under General anesthesia to have an MRI done to check his spine for any abnormalities. We are praying for good reports and for protection during all the procedures.

If they see any narrowing of the esophagus on Tuesday then they would do a dilation and balloon procedure to increase the size of the opening of the esophagus on Thursday while he is already under General anesthesia for the MRI. Please pray for all the details and that Benjamin will have a smooth week of testing. Also pray for us that we will have peace and not be anxious as Benjamin is under anesthesia again for his test. They will have to vent him for the MRI which means they will put a tube down his trachea to help him breathe. Please pray for this to go smoothly and that none of his surgical sites would be disrupted by the procedures.

The Brothers B

Benjamin and Barrett are becoming fast friends and we are really starting to get to know his little personality. We have had so much fun introducing him to lots of friends and family who have come to visit. Our friend Jessica took this great picture of him on his 3-week-old b'day. We are excited about Benjamin's weigh in this week at the doctor because he looks so much bigger and is really filling out. We are also spending lots of time sitting on the porch and enjoying spring. Like most boys Benjamin and Barrett are much happier outside!

Our first week home

We have had a wonderful week at home with our two sweet boys. After all that Benjamin has experienced in his short two and half weeks of life nothing could prepare him for his 2.5-year-old brother who LOVES him and says over and over "He is soooo cute..." in a very high pitched voice. All the bells and whistles of the NICU at Children's did prepare him a bit for all the noises his brother makes crashing trains together or destroying towers of blocks right next to Benjamin's bassinet. Benjamin is a VERY laid back baby and has been pretty easy on us so far. It is amazing how quickly he is healing from all the incisions, heal pricks, IV lines and all the little bumps and bruises he collected along the way during his time at the hospital. He is eating so well and has only had moderate signs of reflux (which we were told that he would definitely have because of his condition). Reflux is a little harder on a TEF baby because acid from the stomach can irrate the surgery site in his esophagus...so he is on medication to help decrease the acidity in his stomach.

Benjamin visited his regular pediatrician, Dr. Stone, this week and had gained 3 ounces in three days which was so exciting. He also had his first bath at home (you will see the pic of him all covered in a towel...). He is sleeping really well (more during the day than at night of coarse...not surprising) but loves his new digs in the beautiful bassinet and the co-sleeper (which big brother Barrett tested out in the picture attached) that friends let us borrow. And much to his mother's dismay he has adopted a favorite new pacifier that has a huge AU printed on the end...no simple white pacifier for this boy...he definitely prefers the Auburn paci...

Thanks to everyone for all the encouragement and support this week. All the meals have been so helpful and we have really enjoyed everyone meeting Benjamin at home! We also had my mom with us this week from Atlanta which was such a huge help and we were glad she got a chance to know little Benjamin since he was discharged from Children's so much earlier than expected.

We are still praying for our next visit to Benjamin's surgeon late this month when we have another Esophogram to check for any scar tissue at the surgery site (which would mean a procedure to dilate and enlarge the area with a small balloon) as well as an MRI to rule out any other future issues. Please just keep praying for this little guy...he is such a fighter and we are just loving every minute with him at home!

Home Sweet Home

We really can't believe it...we were told early this a.m. after Benjamin was weighed and examined that we could pack up and head home! Barrett was at home waiting for us and danced all around Benjamin's car seat and proceeded to give him many "hugs". Needless to say we will be telling Barrett to be gentle a lot.

As far as what the near future holds for little Benjamin...children's scheduled all his follow up visits and it looks like we be there a good bit over the next few months as they monitor the progress of the TEF repair. There is a risk of stricture where the scar tissue narrows in the esophagus over time so in a month they will do another Esophogram to check the surgery site and it if it does narrow they will do an outpatient procedure where they dilated and then place a small "balloon" in the esophagus to stretch out the site. This isn't needed in every TEF case so we are praying that the healing goes well and the scar tissue is minimal. It is a little scary to think about any narrowing because of coarse that would mean food wouldn't clear the site as well and there could be choking...but they say it happens so gradually that we would begin to notice changes in the way he eats, ect.

We also mentioned last week that on a spinal ultrasound they saw a small cyst on Benjamin's lower spine. Our surgeon and the neurosurgeon at Children's want to do a MRI to rule out any issues and to get a complete scan of his back. Unfortunately they have to put him back under anesthesia so we are waiting four weeks so that they can place a breathing tube down his airway without damaging any of the surgical sites. Please pray that this scan is clear (or that the cyst is not restricting the growth of this spinal cord) and that we will need no more procedures.

Other than having lots of bruises from IVs and tape over his incision site little Benjamin looks as healthy as can be. He is a great eater and sleeps soundly between feedings. My mom says he is bound to be our laid back child...with all that he has been through in his first two weeks of life I don't know how he can't be laid back.

Going Home!

We are going home today! We should be leaving early this afternoon. With this move we are thrilled and nervous at the same time. We will provide a better update later with pictures. Thanks for your continued prayers as we transition home.

Room with a VIEW

As quickly as we moved into the NICU step down unit we were moved again to a private room here at Childrens. We are typing this from our new address which is where we will be till we go home with our new baby. They have not indicated how long we will be here and we are hoping it will be a short stay. This is a new day for us as we are now considered the primary care givers (we are here 24/7) and the hospital is just our backup. We are definitely making up for lost time by holding our baby as much as we want and enjoying every minute of it.

Today we had a quick visit from a neuro surgeon who Dr. Barnhart asked to look at Benjamin. He said because of the small cyst that showed up on the Spinal ultrasound last week they are going to do a MRI to rule out any issues. Please pray that it will be clean and there will not be any further issues that would require surgery.

We also pray for energy as Jerry goes back to work and I'll be up a the hospital a lot. Luckily we have family staying with us for the week which will definitely help us balance taking shifts at the hospital.