July 27: A Not So Acceptable Answer

The GI doctor's office called today to set up the long awaited appointment for Cohen to have his belly looked at. They did this even without the "affidavit" from his primary care doctor regarding the corrected information. Which tells me that from looking at his films he needs to be seen, regardless of the new info. With that, Cohen has an appointment.....in NOVEMBER! I am not even kidding and not at all pleased about this. So does this mean John and I have to be on pins and needles for the next 3 months worried something could go seriously wrong with Cohen's belly while we "wait" for his damn appointment?? This is NOT at all okay with me and I'm seriously fuming about the whole situation. The problem is there is only 1 pediatric gastroenterology practice in Spokane...I'm at a loss for what to do now. Any suggestions?

July 24: Exersaucer Attempt #2

Cohen is doing really well with his exersaucer time! He loves spending time just hanging out and looking at the toys that Carter shoves in his face. Here are some pictures of his latest Exersaucer time right before we left for Boise:



There are those eyes again....

This is one of "BabyDoe's" newer looks...pursed lips and big eyes.

July 22: Exersaucer Attempt #1

We got the go ahead from the physical therapist to allow Cohen some "upright" time in an exersaucer. Right away we got it from storage, cleaned it up and put the little man in it. And then we laughed. It took two blankets to prop our almost 6 month old in the exersaucer and his short little legs don't touch the bottom and so they just hang down. It is seriously hilarious and it looks like we are forcing the exersaucer on a two month old. I will say that he seems to enjoy it, I mean just look at his expressions:

July 21: Still No Answers...

I called the Gastroenterologist to set up an appointment on my own (like our doctor said I could do) and they informed me that we needed a referral. Fantastic. After two days on the phone with Cohen's doctor's office, we finally got the referral and records transferred to Spokane....but didn't that happen weeks ago when the doctor first had the guy look at Cohen's films? Well, since his opinion at that time was that nothing needed to be done, they "forgot" about Cohen so he needs review everything again. At this point we are waiting for the Gastroenterologist to review Cohen's records, AGAIN, and then we will get a phone call if they think he needs to be seen. I then called to give them the additional information that his doctor left out, and the Gastroenterologist's office told me I had to have Cohen's doctor submit a note with the "new" info as part of his records...ugh. Now his doctor is on vacation so who knows when that will happen. I am so tired of getting the run around and having to jump through hoops! How hard is it to make an appointment and see the little man? I know it's insurance crap that is creating the hoops, but still it's been a month now and there is little improvement in Cohen and less time in our schedule as school starts back up August 24. Hopefully my mom can corner a Gastroenterologist at her hospital and see if he can give us any insight or better yet actually see Cohen when we are in California in August. So, as for now not much has changed with his symptoms. Still hardly pooping and when he does it is not a pleasant sight. He is totally miserable and it just breaks our hearts to see him like that and not be able to do anything, or get the people who can help him to do anything. Poor guy!

On another note, Cohen has a nasty cough/cold, yes in the middle of July, and we got to spend more time at the doctor dealing that that. Poor kid is going to have no immune system because he is given an antibiotic for every minor thing...

July 17: We Did it...

Yup, Cohen and I got on the airplane and returned home....luckily for my sanity the flight was very smooth and uneventful. The only real issue occurred when we went to meet John and Carter and I got my first sight of Carter's new haircut. My bottom lip was totally quivering...Carter looks like a little boy and not a baby/toddler! John decided to use a #5, a change from the usual #6 haircut Carter gets. And in John's words "#5 is substantially shorter than a #6..."

July 15: Feeling Hot, Hot, HOT!

Our week in Palo Alto was a HOT one! Cohen spent the majority of his days like this:

1) Wearing a tanktop onesie

OR

2) Laying in the bouncer naked in front of the fan!

July 12, 2009: Never Flying Again....

Cohen and I took an impromptu trip to Palo Alto for the week to spend some time with and help out my grandparents. We lucked out in that the flight from Spokane to Seattle was not full and I was able to bring Cohen's car seat on the plane and have him in his own seat. It was quite the flight, with 9 unaccompanied minors and 12 babies on board (2 sets of twins). After an uneventful flight we landed in Seattle and changed planes for our San Jose leg.

The San Jose leg was not only completely full, it was overbooked by 4 seats. Needless to say I wasn't able to bring the car seat on and had to hold Cohen in my lap. We were at the lake for the weekend and because this was a last minute trip I didn't have the baby Bjorn with me to use. Cohen and I settled into the second row behind the wing on the left side, prepared for a smooth flight.

It wasn't. As we were taxing it started to rain. It took a little bit to get up and out of the storm, but I have never heard of a plane crashing due to turbulents so I wasn't too worried. That quickly changed.

As I was gazing out the window, silently thinking I was so glad the "rough part" was over I witnessed the craziest thing ever: the plane was hit by lightning. Not only did I actually see the bolt hit the little lightning rods on the end of the wing, but I saw the ensuing fireball and it singe the wing of the plane. The entire plane was silent. We were all positive that the plane was just going to drop out of the air. Many people tried to access their cell phone to call loved ones and such. The pilot told us that yes we were hit by lightning, not once but 3 time, but the tiny rods attract the bolts and prevent them from actually striking the aircraft. However, because we were in the middle of an "unexpected thunder storm" it would be a very rough ride. Thunderstorms cause fierce up and down winds, called updrafts and downdrafts. These cause extreme turbulence that makes an airplane hard to control. We were making such huge drops, I was so afraid that Cohen was going to go flying. The lady sitting next to me was as well and she helped me hold Cohen down while the man sitting next to her gathered jackets from people and literally tied Cohen to my chest. I was frozen in fear and it was amazing to see these strangers jump into action to help us. We spent a good hour battling the turbulents and finally reached calmer air.

As soon as we got off the plane, I called John and told him that if he wanted Cohen and I to ever come back home he would have to drive down and get us.....he thinks I'm kidding, but at this point I don't think I am! Maybe by Friday I will gather enough strength to get back on a plane....

July 10, 2009: 5 Months!

Cohen is 5 months old today!! He weighs 11.5lbs and is 23.5 inches long. He loves to suck on his hands and is starting to make sweet baby sounds. Monthly moose pictures will follow shortly :)

July 9, 2009: More Opinions...

One word describes today....frustrating. Cohen's doctor called with the gastroenterologist's opinion of the situation: "Because the NICU readily gave Cohen enemas and because we have been doing the same thing every three days he doesn't poop, Cohen simply lacks the development of the muscles in his rectum to push the poop out on his own. We need to have him go 3-4 weeks without using an enema and repeat the barium enema procedure should the situation not improve. Of course, if Cohen's abdomen becomes distended and he vomits green bile, we should consider bringing him into the doctor's office. But he does not see any need for a surgical remedy at this point."

Really? Really! Now I should be jumping for joy at the fact that Cohen doesn't have to go under the knife (just yet). However, Cohen's doctor obviously does not have her facts straight enough to relay them to the gastroenterologist. We have NOT given Cohen an enema every three days since April 5 when we brought him home. Are you kidding me? I would not have allowed that to continue for 3 months before 1) mentioning it to his doctor or 2) having something done about it. Rather, Cohen had a horrible time pooping in the first 4 weeks of life, was fine for 2.5 months, and has just recently required the need for enemas. Yes, he does not poop normally and yes it is explosive but we have not been giving him enemas.

So, now I have to call his doctor and make sure she has the correct information and also call the gastroenterologist and make sure he has the correct info. Again, frustrating!

July 7, 2009: Doctor Follow Up

Today, Cohen went for his follow up to the barium enema proceedure. His doctor fully agrees with the Radiologist and thinks that Cohen needs to be seen by a pediatric gastroenterologist and a surgeon to set out a game plan. We got more information about what the "kink" really is. It's medical name is volvulus. A volvulus is a bowel obstruction in which a loop of bowel (for Cohen its his colon) has abnormally twisted on itself. It causes severe pain and progressive injury to the intestinal wall, with accumulation of gas and fluid in the portion of the bowel obstructed. In infants, they can also present with irregular bowel movements with extreme force behind successful emptying. Sound familiar? The risks involved with this are pretty scary, and I don't want to freak anyone out so I'll refrain from mentioning them here, but if you're really interested I suppose you all have access to wikipedia. I will say this though, the Radiologist was fairly confident that the enema reduced the current volvulus, and thus reduced the current risk. However, in the analogy the Radiologist gave us he isn't certain he fixed the problem any more than temporarily. Imagine folding a piece of paper in half and creasing the fold. Now open the piece of paper, don't smooth it out, just open it. Over time, either a long period or a short period, it will probably go back to the folded position. This is what Cohen's colon is doing and is the reason it will need to be fixed surgically.

The surgery can be done laparoscopicly and they will simply remove the part of the colon that is twisted. They will take out his appendix while they are down there too... If this is the road we have to travel I will go into more detail about the surgery then.

For now, the game plan from here is to have the doctors in Spokane look at Cohen's films and they will call Cohen's doctor in Moscow in the next day or two with information and an opinion about where to go from here.

Good(ish) News & Bad(ish) News

(This is going to be a cliff notes version as I really should be studying for finals…)

Cohen had a Barium Enema test done today to see what is going on with his little belly. John and I both accompanied him on this adventure. We were instructed to not give Cohen anything to eat 4 hours prior to the 11:30 exam time. He woke up at 4am and I fed him and then I tried to wake him up and feed him again at 7am before I left for class, but he wanted nothing to do with me or my boob J On my way home from class I thought for sure I’d walk into the house and see John on the couch with a beer and Cohen in his crib upstairs crying…but surprisingly that wasn’t the case. John was busy cleaning the house and Cohen was asleep in his swing. It was very apparent that he was having some belly issues considering it was 11am and his last meal was at 4am.

The procedure was pretty quick. They inserted a tube in his rear end and hung an IV bag full of barium and let it flow into his body with the aid of the Radiologist moving the tubing to get the barium in the correct space. The Radiologist was a super high energy little man and it felt like he was bouncing all over the place. With that presence, it made us a little nervous when he seemed agitated at one point during the procedure. He kept having the nurse and I turn Cohen on his side, on his back, on to his other side, over and over for a good 5-10 minutes. Cohen was screaming during this part. All of a sudden he and the doctor settled down and the procedure continued. Twenty minutes later the tube was removed, the doctor looked at the screen and said “great” and was out of the room.

The techs took some pictures of his belly and then had us wait around for an hour to see if Cohen could poop out some of the barium in order for them to get an empty colon picture. An hour later and no poop, so they took a picture anyway and told us to return in 3 hours. I went back with Cohen at 4pm and they got another picture of his belly. He still had not pooped out any of the remaining barium, but that should occur over time…yeah right.

After that picture the Radiologist brought me into his office to discuss some things. I entered the room and pictures of my little baby’s insides were hanging up all over. The Radiologist said that we are dealing with a couple of things. First off, he doesn’t appear to have classical Hirschprung’s Disease (which made me breathe a quick sigh of relief…), but he may have the rarest form of the disease. (of course he does, he is my son…). You see, in classical Hirschprung’s the missing nerves are at the top of the colon and the intestines are inflamed and the colon is of normal size, and in Cohen’s case, as is the case with the rare form of the disease, the intestines are of normal size and the colon is inflamed (because the missing nerves are at the end of the colon). It sounds like somewhat of an answer, but the Radiologist is more concerned about another area of Cohen’s colon and will rule out or confirm Hirschprung’s after this other problem is dealt with.

When babies are formed in utero all of the insides are formed outside of the body and they then fold in through the umbilical hole in a very precise manner. When Cohen was forming, the doctor believes that Cohen’s colon folded on top of itself making a kink in the colon. The above mentioned movement of moving Cohen on his side back and forth during the procedure was because the barium reached a point in his colon and just stopped. The doctor was trying to get the barium to “punch through” the kink and it wasn’t happening. It finally did after a lot of stimulation and that is when both the doctor and Cohen calmed down as the barium was able to move throughout the rest of the colon. The doctor said he was hopeful that he fixed the kink with the barium, but then said it was highly unlikely because he reviewed Cohen’s medical record and it appears that this has been happening since birth: A month of constipation and explosive and irregular poop, followed by a month of seemingly more normal bowel movements, then back to irregular and abnormal bowel function. The doctor is unsure if it is actually a kink due to a fold or if there is another organ that has made a band across that section of bowel and is making the kink.

Now what? Well the Radiologist said we could probably wait to see if the barium really did fix the kink, but otherwise there would an exploratory surgery needed in order to fully grasp what is going on. John and I discussed it and we are not interested in waiting around to see how things go. This may sound funny to some people, but for use, the risks involved in waiting clearly outweigh those of a simple(ish, more on that later) laparoscopic procedure. As he stands right now, Cohen has a very high risk of perforating his colon with the amount of pressure and back up of his bowels. The situation can become very emergent and grave should that happen. Cohen has an appointment with his doctor on 7/7 and we are going to get a referral to a pediatric gastroenterologist as soon as possible to get the ball rolling on his diagnosis and treatment.

All in all we learned a lot and nothing all at the same time. I will keep you all posted as we gather more information. Thank you for all the prayers and love and support for our little man. I promise to do a much better and more detailed explanation of things after my finals!