Monday, March 31, 2008

Finally...some REAL food...




Baby Benjamin had an exciting day...he was doing really well with just his OG tube and no vent and all his stats looked good so they decided to start putting breast milk into his OG tube (the little thing that looks like a straw coming out of his mouth in all the pics) which runs down his newly constructed esophagus and all the way down into his stomach. So this isn't a test of the viability of the esophagus (which will hopefully happen later in the week) but this is a way to get food into his tummy which should make him feel much better. They are starting out slow to make sure he doesn't have any issues because of spit up, ect. They will continuously feed him all day and night. When I told Barrett about baby Benjamin getting food into his tummy he said "he is going to get bigger and bigger and bigger!!!" This was as he stood up in his new big boy bed and made his baby brother as tall as he possibly could with his sweet imagination.


Please pray that the feedings will go as well as possible and that his stomach will tolerate the food and his esophagus will tolerate any spit up that may come back up after eating. NO LEAKS...we want no leaks in his new little plumbing. Also that he will rest comfortably and not pull out that OG tube...he is pretty good at finding it and trying his best to get rid of it...which would not be the best thing for him right now. It would take a lot of careful work to put one back in past his incision site. In the new pics you will see his little car mittens we have put on him to slow him down...he actually seems to like them but not as much as he likes his pacifier! He will have on his little BR light sunglasses for a while longer but the lights and now feeding should help his levels to go down soon.
We also took a picture of his amazing blond hair today that has made the NICU nurses swoon over the little fella...he finally got to have his hair washed around his IV that is in his scalp last night so it made us see just how blond it really is!

Many friends outside of Red Mountain Church have asked if they can bring a meal to us to help out which is so kind. Our friend Ashley is organizing meals and she said to feel free to email her and she will let you know how you can help. Her email is ablomeyer@artsbma.org


Sunday, March 30, 2008

Strong little boy

Benjamin had a big day. The doctors felt like he was breathing well enough that his breathing tube could be removed at about 10:00 a.m this morning. They then put him under a vent hood (the huge plastic thing around his head in pics below) that supplied him with moisture and some oxygen to help the transition from breathing tube to hopefully just breathing on his own. They also felt like he needed a little time under the BR lamp because his numbers were creeping up (hence the blue light pics below...and the cool new Velcro sunglasses he is wearing).



Today we were so humbled by how strong Benjamin is and how we are continuously told he is doing so well and that he keeps meeting all the bench marks they set for him. Very humbling when you are surrounding by babies that are so sick and have been on breathing tubes for months and months. We are so thankful but there is also a deep sense of sadness as you watch other parents who are so brokenhearted and frightened all around you. Needless to say this experience is going to change us forever. We love all our Red Mountain Church medical friends so much (and are so thankful for their visits to baby Benjamin) but I have a new found admiration and respect for their commitment to taking care of babies/children. As a mom of a little boy who had to be fixed by doctors I now know what they mean to the people they treat everyday. Benjamin was named after two Bens in our life...and now it seems ironic that one is a pediatrician. Ben J. jokingly told us that we can't start talking NICU lingo because up till now we were his pure non-medical friends...completely unwise in ALL things medical. Unfortunately...I think we have been catapulted into a mini-residency...



Great things that happened today! I got to change his diaper (pretty exciting to a mom who hasn't gotten to do that yet to her little 3 day old), Benjamin cried...really loudly...which is a good sign that he had enough energy to want to make a fuss, the vent came out as well as two unused IVs in Benjamin's foot and hand...



Things to pray for in the next few days: That when the doctors examine him in the next few days they will have wisdom as to the steps to take next and that Benjamin's incisions will continue to heal completely and that when they test the esophagus on Friday that there are NO leaks. We also pray that he will be as comfortable as possible and we can keep him from pulling out his last little OG tube from his mouth (he is pretty determined to get it out of there!).










Day 3




Sweet baby Benjamin is doing well this morning and his daddy is off to be with him for a little one on one before the NICU closes at 6:00 a.m. Benjamin has already come to love "I am Jesus Little Lamb" and it seems to be a great way to comfort him before we leave and when we get back to him. It is amazing how the time flies when you are just sitting next to his little hospital bed staring at him. I know they don't hold anything back at Children's and shoot straight with you on the condition of your child so I am going to believe them when they say he is doing really well...even though as a mom you can't imagine how that can be so. With his little feeding tube on his scalp and all the tape and wires it just feels so overwhelming. Our hope is that they will continue to help sedate him enough so that he can rest comfortable and not be in a great deal of pain from the surgery but still start waking up enough that they can begin removing his breathing tube and progressing his treatment. He cannot be held right now but that doesn't stop us from doing lots of rubbing and kissing on his head and singing and talking to him. He is the hit of the NICU and is getting spoiled by all the sweet nurses.

Barrett is doing well hanging out with his grandmama and granddaddy but is definitely a little anxious with us popping in and out so much. Thanks to our amazing community group and other friends and family Barrett is also on his way to being spoiled with all the entertainment and "big brother" happies they have brought him. We are going to work on a drawing a sign for Benjamin's bed this morning with Barrett and have a good family breakfast here before we go back to the hospital. Barrett has never kissed me so hard (and he offers the occasional lick on my face thanks to the influence of the Lion King). Please pray that Barrett will be peaceful and stay healthy so he can hopefully come visit Benjamin once some of the wires and tubes are not being used.

Today please pray for Benjamin's vitals to stay strong and stable and that in the next few days the tests to see if there are any leaks in his new esophagus will be favorable. Also please pray for the nurses and doctors to continue to have wisdom as we move forward in the process of getting ready to introduce food/breast milk and hopefully move in a week or so to the step-down NICU nursery and then eventually a private room. It will be a long process (or so they say) even without any bumps along the way. Our nurse told me last night "I'm glad you don't have too scary of a situation..." which I'm beginning to understand what she means after being surrounded by such sick babies for the past few days. There are several babies near Benjamin who have been there for months (or even almost a year) and have a laundry list of problems that seem even more overwhelming than I can imagine. And on top of that many of those parents have an hour or more to drive each day to be with their babies...when they ask where we live I feel guilty giving our location (20 blocks away). God is so merciful to have let us settle in our new home and be ready for this special baby. It is amazing what mercy looks like right now...you could have never told me this is where we would be...but here we are...

Saturday, March 29, 2008

Precious little Benjamin




We want to thank everyone for the amazing support and prayers. We are having lots of firsts this weeks and blogging is one of those. Benjamin Everett Grant was born on Thursday at 4:48 p.m. and weighed 6 pounds 15 oz. He is 20.5" long and at first glance looks as healthy as can be. Like a little beach baby with amazing white blond hair and tan little skin. He also has two little dimples that are so precious and of coarse we fell in love with him the second he entered our hands. A few minutes after delivery Benjamin started choking and the nurses at Brookwood suctioned him for a very long time and removed a large amount of mucus from his lungs. When they tried to remove any mucus from his stomach that may have been swallowed during the delivery they started to see that the problem was a bigger one than first thought. The OG tube put into Benjamin would only go down about 14cm and stop completely short of his stomach. After being rushed to the Brookwood NICU and being seen by the Neo-natalogist Dr. Stong she decided to transport him to Children's just hours after he was born. We had some great moments with him before he left and Barrett even got to sit next to him and kiss his head (and become quickly obsessed with his baby brother).

After Benjamin arrived at Children's NICU they were able to a battery of tests to find out exactly what was wrong with him. For an accurate description that will clearly explain the issue you can go to www.aafp.org (American Family Physician)and enter Esophageal Atresia and Tracheoesophageal Fistula to get the complete medical description of the issue. In plain, in the womb at about 18 weeks Benjamin's esophagus did not form between his throat and his stomach and the part that was connected to his stomach was connect to his trachea tube. So to be able to ever eat he had to have the esophagus reconstructed so that the two pieces of the puzzle are put back together and the small tube that was attached to his trachea had to be removed and sealed to make sure nothing from the stomach would get into his lungs. Both of these things needed to be done immediately.

So within 24 hours of birth Baby Benjamin had taken a ride in an ambulance, changed hospitals, had more nurses and doctors than I think any human should have and had every possible scan and ultrasound done on his little body imaginable. We are so thankful that they were able to get him into Surgery on the Friday after his birth at around 4:45 and the surgery lasted about 2.5 hours and was very successful. Dr. Barnhardt and the other surgeons at Children's were amazing and from what they saw this really was the best of what can be a really bad situation.

Dr. B removed the part between his stomach and and trachea and attached it where it should have been developed. He then repaired everything and considered the surgery a success. Now the recovery begins and it is a slow proccess. He should be eating by the end of next week (breast milk through a tube running into his mouth down the new esophagus into the stomach) and if there are no leaks (which if there are that will add an immediate 7 days to repair and wait to confirm it is fixed) we should be home in one to two weeks.

Thankfully Melanie was released from Brookwood by 8:00 a.m. the morning after delivery and was able to be with Benjamin all day Friday. Needless to say we are tired but relieved to be out of the woods for now.

The prayer right now is that there are no leaks in the new esophagus, that Benjamin will rest well under medication and heal completely from the surgery with no infection, ect. We also pray that other organs (kidneys, bladder...everything down stream) have no anomolies to make further correction necessary. This is a congenital anomoly that can have other "sister" anomolies but so far his heart, ect...has looked normal (Praise God).


Thank EVERYONE for their prayers and please...keep praying for this sweet little boy. We will continue to update and add pictures as we can.

Love, Melanie, Jerry (and big brother Barrett)

Friday, March 28, 2008

welcome to the world

Benjamin was born on Thursday, March 27.  Shortly after he was born we learned that he suffered from a congenital defect known as Esophageal Atresia, which means his stomach forms into a pouch instead of connecting to his stomach.  He was transferred to Children's Hospital and is currently (5 p.m. on Friday) undergoing surgery to repair the condition.

Jerry and Melanie will use this site to update information as it is available.

Please pray that the surgery is a success with no complications.