Be still, and know that I am God.

The big day has finally come. It's been 14 weeks since Drew's first surgery. It was a very long procedure, but things went very well. He left the NICU about 8:30 this morning. Surgery actually began about 9:30, and he was back in the NICU just before 4 pm. As we had hoped for, he was able to have a primary repair, and didn't need to bridge the gap with colon. The surgeon did have to stretch the esophagus some, but the best case is for him to have only esophagus.
Drew handled surgery very well. The only complication was when they had to stop to clear some mucous out of his airway. Since he's been out of surgery everyone that came by to check on Drew has said that he looks great. Surgery is very hard on the body, so I guess relative to other babies he looks great. He's a little pain, and battle worn, but good.
In order to make sure that he doesn't move too much and open the repair site he will be medically paralyzed for 4-5 days. Because that makes it so he can't breathe well, he'll have to be on the ventilator during that time as well.
Explaination of the tubes: The tube from his nose goes down to his stomach and is holding the esophagus open. The one from his mouth is the ventilator that breathes for him. He still has the G-tube in the left of his stomach (it's hard to see in this picutre). The red tube from his right side is a chest tube that drains fluid from the surgical site to prevent pressure build up. He has a central line for IV nutrition and medication in his right thigh, and and IV in his left hand. He also has a catheter in, because he can't urinate while paralyzed. You can also see the monitor on his right foot that measures the level of oxygen in his blood, and the blood pressure cuff on his left leg. By watching his heart rate and blood pressure they know when he's in pain and needs more medicine.
It was a very long day for Ryan and I, but we are grateful that Drew will now be able to eat and swallow his saliva. This was the biggest step in the journey to him being able to come home.
We feel very blessed in all that has happened.

The wait is almost over.

Drew is learning and growing great!! Despite being in the hospital, he's gaining head control and has learned to bat at his toys above him and bring toys to his mouth. He's just starting to grasp for things, especially the tube in his mouth. Luckily he'll be free of that soon.
Surgery is scheduled for 9AM tomorrow, Monday April 27th. If they are able to do a 'primary repair' and connect his esophagus we expect 3-4 hours. If they need to bridge with part of his colon, it will take about 6 hours.
The bowel prep (to empty the colon in case they need it) was started on Wednesday and has been dripping into his intestine at 20 cc's an hour. We were fairly sure by Friday he was refluxing some of it up into his lung. He was starting to cough more, and sleep more again. On Saturday I mentioned this during rounds, and the decision was made to stop the bowel prep.
There had been some signs of infection this week, as his temperature rose and he was sleeping more than normal. His blood count also indicated that his immune system was fighting something, but no infection has been found. Most likely is that he was just struggling with fluid getting into his lung.
Tyler spent the last week in Ferron with Ryan and Grandma and Grandpa Christensen. He's learned about boats now, and enjoyed his time there.
We will report again soon. We have faith in the Lord that surgery will go well. Thank you for all your prayers as well.

Patience is a virtue.

I don't even know where to start. . . .

Saturday we got to have both of our boys with us at the same time. Tyler was interested in Drew for a bit, but got bored being in the room after a while. It was really nice though. I think it's helped Tyler understand where we're going when we leave everyday. I really enjoyed it.

Monday I called the surgeon, who then came and talked to us. He said we had three options: 1.) His schedule was full for the week, but he would be willing to come in on Friday (the 17th) and do Drew's surgery if there was an OR available. He is leaving for a week long conference on Monday, the 20th, and wouldn't be available for follow-up care. 2.) We could have another surgeon assume care of Drew and do the surgery. 3.) We could wait until Dr. Barhart is back from the conference and schedule surgery for the 27th.
We chose option #3. We don't want to have to change Dr.'s and want to have our doctor making the decisions post-op, so we are going to wait. In the long run I think it will be best for Drew because that will give him 2 extra weeks of growth. We've been praying for the best result for him, and maybe this is what has to happen to get it.
In the meantime, I'll continue to practice my patience skills.

Change in plans

Well, for some reason I can't get my pictures to upload. So here's the story, minus cute pictures:

Drew started bowel prep yesterday, which wasn't so pleasant. He handled it fairly well though. When I was there to see him today the NNP (just higher than a nurse) came to examine him and found that his right arm was swollen, red, and warm. This is the arm that had the line for meds and IV nutrition (PICC line). PICC lines are very good in that you don't have to change IV lines all the time, but carry a high risk for infection.
So they took a blood sample to count all the cells, took a blood culture from his leg, and one from the line, and are culturing the line as well.
Given the possibility of infection surgery was cancelled for tomorrow. Depending on what the cultures show, surgery may be on Monday. Nothing is in stone until you actually start the procedure at the hospital.

I'm a little disappointed, but I think it will be for the better. This way he has a few extra days to grow, and we'll know he doesn't have an infection for surgery.

Thanks to our amazing NNP we also have a rare opportunity coming up this weekend. It's been approved for us to bring Tyler to see Drew on Saturday!! They will move Drew into a 'family room', which is basically his own hospital room with a bathroom, couch, TV, etc plus the monitors and hookups for his suction. I am so excited for us to finally be together, even if it's just for a few hours. I hope that it will help Tyler to understand what's going on a little bit more as well. This is really going to be a treat for Ryan and I.

Special Fast

Dear Friends and Family,
A special fast will be held for Drew on Thurs, April 9th. All interested are invited to join. My prayers are that things will go well in surgery, that he'll be able to have a 'primary repair' (long enough esophagus), and that he'll recover quickly and fully. Thank you again for all your support and prayers. 5 days til surgery.

Surgery is scheduled!!

Tyler has both of his parents for a few days again. He had a great time playing with Grandma Shell and Grandpa Steve this week. It's amazing how fast he's learning things. While in Ferron he learned to say, "P-U Bell". I missed him, but I'm glad that he could spend some time with Ryan and have a break from things up here for a bit. Ryan enjoyed having him there as well. He's been alone for a while now.
There was a break-through for Drew this week. Drew's surgery is scheduled for April 10 at approximately 10 am!

Now for the whole story: After Drew's GJ tube (that fed him into his small intestine or jujenum) was pulled out they put a tube in to feed him into his stomach again, since his esophagus had healed. He had been doing very well with it and we were ready to move into progress toward normal feeding. He had been on a pump that fed him continuously 24 hours a day.
Monday, March 30, while I was there he started coughing more than usual for him. I mentioned it to a few people, but it was blamed on the tube in his mouth likely being in a strange spot. By Monday night the fluid coming out of that tube was a milky color. The nurse saved it and we showed it to everyone who came by on Tuesday, but it was again put off. By Wednesday his cough was bad enough I knew something more needed to be done. Drew didn't let us know that he had fluid in his chest last time until his entire right lung had collapsed. I count it as a great blessing that the NNP on Wednesday was Sarah, who has been encouraging me since February to stand up and speak for Drew when I notice things are different. I hadn't done so the week before until he had absolute signs of an infection around his tube, although I had felt something was off for several days prior. So when I said to Sarah that I felt the cough was more, she ordered a chest X-ray. Sure enough fluid in his upper right lung. So Thurs we had another upper GI study (where they put dye into his stomach and watch to see where it goes). The doctors were all still doubtful, but I was nearly sure there was a connection between his stomach and airway. I was right. The fluid filled his stomach, went up the esophagus, and then a tiny stream branched off into his airway. So although they had removed one connection in the first surgery, there was a second hiding that was unexpected and undetected all this time.

So what now? The surgeon, who had come to watch the upper GI, was baffled and said he would think on it and let me know what plan he recommended.
When he returned he had decided that we'll watch Drew's lung this week and he'll get IV nutrition (which he's been getting since Wednesday anyway), next week we'll clean out his intestine and on Friday Drew will have surgery. Hopefully the esophagus will be long enough to connect, but the intestine will be clean so that he can use part of it to bridge the gap if neccessary. Bottom line: Drew will have his repair surgery Friday.

I've been a bit mixed on my feelings about it. While I am so looking forward to be able to take Drew home, I hope that his esophagus will have grown enough to have a 'primary repair' (no intestine needed to replace). The digestive system has wave-like motions, called peristalsys, that help to move the food through. So if they have to use something other than just his esophagus the movement will be different, or not adequate and make it difficult for Drew to eat.

For now I'm going to just think positive and pray that he will finish growing what he need to before Friday morning. With that in mind, I am so excited for him to be able to eat by mouth and go home!! So it's probably a blessing in disguise for us.

This time in my life has caused me to really review my beliefs, and while I don't think I could ever forget my testimony of the gospel, it's been difficult to watch my little boys struggle through this and not ask "WHY?". I decided this week, after 11 long weeks, that the Lord sent Drew to me because he knew I could handle it. And although I'll maybe never know why he's had to suffer through this and why Tyler had to have his world shaken, why Ryan and I have had to be separated, we'll all be stronger for having gone through it. We have been greatly blessed through-out, and I probably haven't even recognized most of the blessings.

I know of my Father in Heaven, who loves us so greatly. I know my Savior, my brother, suffered ALL things and atoned for our sins, that we might be able to gain Salvation. I am sure He hears our prayers and is perfectly aware of our struggles and hopes and joys and answers accordingly for our good. I am so grateful for your prayers for our family and especially for Drew. He is amazing and has been able to tollerate so much, and I'm sure he's been strengthed through our prayers.