We had another appointment with the surgeon today..just to go over everything the ENT specialist had said. She was very happy with what the specialist had to say and she said that things looked really good in Benjamin's airway. So surgery is scheduled for surgery at 8:00am May 12th. The ENT Dr. will take the first hour to look below Benjamin's voicebox and as long as there is nothing major Dr. Butter will continue on and repair Benjamin's hernia. He actually has 2 hernia's, one smaller and one bigger. He also has a puncture scar from his ileostomy surgery that is pretty stuck. She is going to try to fix that up a little as well. We are thankful we don't have to do pre-admit or bloodwork again. We have gotten Benjamin onto a pretty good schedule now too, so I think postponing surgery last time was good for that reason to. Last night he was up at midnight for a bottle and then didn't have another one until 6:30am. So he is tolerating longer stretches which will definitely help.

Next week we have no appointments..and nothing should come up. So we'll have a week off before a crazy week. Benjamin will have his "big" developmental follow- up at St. Joes on the Monday, OT Tuesday and surgery Thursday.

Anyways, I hope everyone had a great Easter weekend. We did...another first for Benjamin. We ask for prayers of strength and comfort as we get ready for Benjamin's last surgery.

Our appointment with the ENT specialist went well, although Benjamin was not a happy camper. The doctor used a special camera to go through his nostrils to look at his airway. Everything looked really good. Unfortunately he can't get farther then the voicebox, so when Benjamin is intubated for surgery he will take an hour to go lower down to check his airway below his voicebox. If there is any narrowing or cysts he can laser them off right there. But he was confident that there wasn't going to be any major issues. Of coarse Benjamin wasn't wheezy at all today. He screamed during the procedure..Jon held him and pinned his arms down and the nurse held his head. It was sad :( Anyways, I feel a lot more comfortable after having that done. Now we're just waiting for the surgeon to call with the date. I am so thankful that things look good..its an answered prayer.

Cancelled

Well the surgeon's office called this morning after I posted my last entry and the doctors have decided to cancel Benjamin's surgery. We are now having a consult with the ENT doctor on the 20th. That doctor isn't taking any new referrals so we are so lucky that he is taking Benjamin. Then we go from there. I am thankful that the doctors are being so cautious and relieved that they are going the extra mile to make sure they know what they are getting into. So I will keep you posted and appreciate all the well wishes and prayers we have been recieving!

So yesterday we had pre-admit. It went ok I guess. They went through all in the ins and outs of surgery day...but when we had our meeting with the anesthesiologist she listened to Benjamin and started questionning his asthma diagnosis. She said that there should have been a time when Benjamin was symptom free since he is on a strong inhaler...but Benjamin has been wheezy since January. After listening to him she is starting to think he has something called subglottic stenosis. This is the narrowing of the airway below the vocal cords, which would be caused from repeat intubations. So the sounds we hear could actually be a stridor. This complicates things more. They will have to be very careful when they intubate him on Thursday..they will used a very small tube. The doctors are now arranging for and ENT doctor to come take a look at Benjamin while his intubated to see what's going on. This will probably land him in intensive care...which I hate, but I know is the best place for him..to be monitored closely. If its diagnosed Thursday then obviously it will rule out asthma and we can take him off those meds... There are different grades of subglottic stenosis, so we'll have to see what the coarse of action would be. It is something he could outgrow if it a mild case... We need lots of prayers...just when we think one door is closing another one opens. We need prayers for Benjamin's health through this, but we also need prayers for strength for Jon and I...It is so scarey, trying, exhausting... I'll update as soon as I can on Thursday!

We have been laying low the last few days. Benjamin started coughing Tuesday night. Of coarse the week before surgery he comes down with something. Whatever is bugging him seems to be the same thing he has had a couple times this winter...cough, more wheezy then normal. So we increased his puffer which helps. His cough is definitely getting better so I'm optimistic that by Thursday he'll be fine. Benjamin also has an extra dose of the RSV vaccine. We're getting that tomorrow to, which I am extra thankful for because he'll in the hospital. The asthma dr. said RSV season runs into June. Tomorrow is pre-admit clinic where we get all the details of surgery. I'm anxious as usual. I just feel so stressed out about it...so worried. So worried about everything lately. I know I'm not praying enough..trying to carry it all on my own. I'm working on it.

We've been bottle feeding more lately. We're trying to get Benjamin onto some sort of schedule. He's not a very efficient nurser. I'm getting tired of nursing him every 2 hours. I am his pacifier which is ok sometimes, but he seems to need me all the time. So I'm back to pumping and he's finally taking the bottle. At first he had a fit because I think he thought it was a soother. Finally he realized that it wasn't and now takes it fine. So I think that will take some of the stress off. I can leave the house with the girls and not have to worry...I can go out for coffee with my friends (which I'm doing tonight for the first time in forever). I know its a bit selfish, but I'm tired...and he's still getting my milk, which is the important thing.

Anyways, I will post once more before surgery and then update as soon as I can on Thursday. Please pray Benjamin is fully healthy by Thursday. Pray for guidence for the doctor...I don't know if I've ever mentioned his surgeon by name. Her name is Dr.Butter..(pronounced Booter) and she is my hero :) Thanks for all the support.

I have so much anxiety getting ready for Benjamin's surgery. I cringe while I write his name on the inside of his pajamas..I did this while he was in the nicu. I will probably be at the hospital the full week with him. I am starting to pump and bottle feed a little so that I can get a break and come home. Benjamin also nurses around the clock, so much goal is to get him on a better schedule and do both. It will give Jon the opportunity to feed Benjamin and hopefully grow their bond a bit more. Benjamin is definitely a mama's boy and cries if I even leave for 20min. It will give me a little more freedom as well. I could spend a little more one on one time with the girls too. I hope he can do both, bottle and breast. I do enjoy nursing him, it just becomes a lot when he nurses every 2 hours. We'll see how it goes. He took a bottle from me the other day with no issues. We have our pre-admit appointment monday afternoon..where they'll tell us exactly what's going to happen. I'm definitley thankful for the extra dose of the RSV vaccine the doctor has. Benjamin will get that on Monday as well.
Benjamin is doing great. He is starting to eat things like fruit puffs and rice cookies. He does really well. I was really surprised to watch him pick the rice puffs up and put them in his mouth..great for his fine motor skills. He's just doing so well.
Yesterday a mom I met on a preemie forum lost her little boy to NEC yesterday afternoon. SO SO sad....It is a quick reminder about how lucky we are to have Benjamin and that he is so well after battling such a serious illness. WE are blessed. Please pray for her and her husband as they now plan a funeral. Pray for us as we get ready this week for surgery....that we turn it over to God and not try to carry this on our own.