June 29, 2009: Doctor's Opinion

I got a call from Cohen’s doctor this morning. She agrees with the Radiologist and is sending Cohen for some additional testing to either confirm or rule out Hirschsprung's Disease. On Thursday he will have a contrast enema to look at his colon and intestines, as well as an upper GI series incase Hirschprung’s is not the diagnosis. We will keep you posted. I am beginning to think that I am not allowed to take a final stress free: the week before fall semester’s finals we were given news that Cohen could potentially have a fatal heart defect and now a week before summer finals I find out about this. Perfect.

June 26-27: Gritman ER x 2

We spent a majority of the weekend in the ER with Cohen. I took him in Friday night because he was not swallowing anything, not even drool that he suddenly has, his breathing pattern was very strange, and he had suddenly turned a very very yellow pale color. When we got to the ER they hooked him up on the monitors and it showed his respiration rate and o2 sats were low. When the doctor poked around at his belly he started to cry and get fussy so she ordered an xray of his little body. From what the ER doc could see, the x ray showed an abnormal amount of gas in his belly, intestines and colon. All that gas was pushing his diaphragm up and making it hard for him to breathe. A baby enema was ordered and hopefully that would help him feel better. Alas, there were no pediatric enemas in the hospital at the time and (it being 12am) no store was open to get one. We were sent home with orders to give him an enema first thing in the morning. I left puzzled as to why this would be his problem because he had pooped maybe 30 minutes before we went to the ER…..

On Saturday morning we gave him the enema and were quickly shown results…from the enema, that is. He still wasn’t breathing correctly, nor was he eating very well. This time he was eating but then spitting it right back at me. His color was still very pale and he was abnormally sleepy. We wrestled with the thought of taking him to quick care. Then I received a call from the ER. The Radiologist had looked at Cohen’s films from the night before and had some concerns with what he saw. He was in the process of trying to contact Cohen’s doctor to discuss it with her. The nurse said she would call back with more information. By 3pm she had called back and said they couldn’t get a hold of Cohen’s doctor but to bring him in if he didn’t seem better. We did just that.

The ER visit on Saturday night was long and seemingly unproductive in the realm of presently helping Cohen. The new ER doctor that night thought the films from the night before were just fine, but he sent them up to Spokane to a Neonatologist to review them. The Radiologist came into the ER to have words with the ER doctor about their differing opinions. The Radiologist looks at xray films as a profession and is certain of what he saw in Cohen’s films, while the ER doc wasn’t so convinced. The Neonatologist chimed in that while the films are suspect, she is sure they would have caught this while he was in the NICU. With that, Cohen was sent for another round of x rays. Meanwhile, he was still uninterested in eating and just not being himself.

The follow up x rays showed the amount of gas in his belly was still a lot, but it had decreased from the first x ray. (Probably with the help of the enema). The first Radiologist saw the same issues he was concerned about, so they sent the two films to be looked at by Cohen’s doctor to decide where to go from there. (Oh, of whom no one at the ER could get a hold of ALL night long…) At 11pm, we were discharged home and told Cohen’s doctor would contact us on Monday.
So what did the Radiologist see? In addition to the abnormal gas patterns (which the ER doc from Friday saw), the Radiologist believes that Cohen has a transverse colon and probable case of Hirschsprung's Disease. This disease occurs when some of the nerve cells that are normally present in the wall of the intestine do not form properly during fetal development. The nerve cells are needed to help move food through the digestive system, and when the nerve cells are missing this movement cannot occur. The result is that stool can back up and cause either partial or complete bowl obstruction. The only treatment is surgery to remove the affected part of the intestine, and connect a healthy working part of the intestine to the colon.

This is the worst case scenario for Cohen’s symptoms, so we are hopefully that he does not have this disease. However, comparing his symptoms to the symptom list it looks as if there is a chance he does have it. The number one symptom is no bowel movement for the first 48 hours of life…and if you can remember, Cohen had a horrific time with pooping while he was in the NICU…ESPECIALLY during his first few days. Also, any one who has been around Cohen knows that when he poops he explodes. EVERY single poop that he has is a blowout. Seriously. Couple that with Cohen not pooping on a regular basis, all point to signs something is up…down there.

In addition to all of the lower GI issues, Cohen has the worst case of thrush ever. Thrust = yeast infection in mouth = GROSS. He had an ear infection two weeks ago and was on antibiotics, and apparently that can cause thrush in infants. According to the Neonatologist, neonates have the worst cases of thrush because of immature and inappropriate cell development (yadda, yadda, yadda which is what was going on in my head as the ER doc told me this…). He was on Nystatin the first day it appeared (thank you to the director of his day care who has an uncanny ability to diagnose the ailments of my children…first with Carter’s pink eye, now with this…), which was Tuesday and by Friday his mouth was completely white. I guess it takes double the time with Nystatin to help babies like Cohen, and if that doesn’t work after 2 weeks they have to get more aggressive. The ER doc looked in his mouth and discovered that not only is his entire mouth white, but so is the opening to his esophagus…which probably means it’s all the way down it. This can be really painful and irritating, so that plus the excess gas issue is making Cohen not feeling so great.

Luckily the thrush will go away with minimal treatment, so hopefully he will start to feel a little bit better. Right now our little man is at home resting. He has slept for the majority of today, which shows us how miserable he really is. It breaks my heart to know that Cohen’s belly has been this irritating to him for the last 4 months…..

June 23, 2009: SMILE, Baby!

A BIG thank you to Cohen’s teacher, Liz, who was able to capture Cohen’s first smile on film! He has been smiling for a few weeks now, but every time I run to grab the camera he is suddenly uninterested in smiling. But alas, Liz got it done and the pictures are super adorable. Thank you, Liz!

I don't know about this picture thing...I don't let mommy take pictures of me smiling, so you must be special Ms. Liz...
How about this, I'm thinking about smiling...does that count?

Oh, okay, you win...here is my cheesy grin!
And this one is for you momma!

June 21, 2009: Happy Father's Day!

Today marks John’s second official Father’s Day (we celebrated Father’s day when I was pregnant with Carter), and he has two boys! Rest assured adding a baby every year will not be a continuing trend.

John is the best daddy in the whole world and I love how he dotes on his little boys. It is so fun to see a 6’4 man melt in an instant when he is around his babies. This has been a hard winter. I can’t even begin to explain helpful and wonderful John was during our NICU experience; it’s not easy being a single dad while you’re in grad school, but John pulled it off and that allowed me to spend time with Cohen in the NICU. I don’t know what I would have done without John as my rock and my nanny, haha :)

The boys are so unbelievably blessed to have such a wonderful daddy and I am equally blessed to be madly in love with their daddy! Thank you for all that you do, We Love You!!

Daddy with Baby Doe, also known as Cohen
Daddy with Mr. Smellypants, also known as Carter.

June 19, 2009: Mr. Helper

Carter loves to help with his baby brother. Whether it is making sure Cohen’s toy is playing music at every second of the day or if he needs a bottle, Carter is there:

Baby Doe! I bet you are hungry...I get hungry when I sleep, so I am sure you need a bottle.....

Baby Doe! You're supposed to open your mouth when a bottle is near it. I'm sure the bottle has only been sitting on the table for a day....

Baby Doe! Here, if I use more force will you take the bottle? Please take the bottle....

Baby Doe Eat, Dadda. Darn, I got caught. Until next time Baby Doe, until next time.

June 17, 2009: Progress!

In addition to sleeping, Cohen is starting to make progress with his development and I think it has to do with the quality of sleep he is getting at night. Here are some pictures proving that Cohen is now very interested in his hands. Just a few weeks ago he was “marked down” because he wasn’t bringing his hands together in the center of his body…I’d say he’s doing a fairly decent job of it now. Great Job, Baby!

June 15, 2009: Can You Say SLEEP?

After a long 8 weeks, Cohen officially has an apnea monitor! His doctor’s office called us as soon as she received the report from the physical therapist and by the next day Cohen was set up with the monitor. I would say it is a far cry from the fancy monitors at the hospital, as there is no numbers to read. But it is portable and not very big, so that is a plus. The machine’s levels are set by the doctor and if his heart rate goes above or below the levels or if his respiration rate dips too low a god awful alarm goes off…man is it loud, but I guess that is the point, huh? While the guy was showing me how to use the machine we had to test it out on Cohen, 30 minutes on his belly and 30 minutes on his back, and wouldn’t you know he had no apnea on his belly but he had 2 episodes while he was on his back! He promptly told me my baby should never sleep on his back if he is having episodes like that…for which I told him that my intuition told me I should keep him on his belly. Though it was very scary to know he is still having apnea, I finally felt like I was being listened to. The doctor ordered Cohen to be hooked up to the monitor at night and if we are in the car for more than 1 hour straight….so it is a good think the little machine is portable!

So the question is, is it working? Well, the first night we had the apnea monitor Cohen slept from 9pm until 4am! John and I got so much sleep we were exhausted in the morning. The alarm has only gone off once, but I think that was because he was holding his breath while he was pooping :) Overall, the Hawkins Family is finally starting to get some much needed rest.

Here are some pictures of Cohen’s new sleeping arrangements:

He's not a big fan of being naked...this is what he looks like after a bath right before getting ready for bed.

Naked Cohen with his leeds on

Jammies on with the leed wires coming out of the snaps. The big hand is his NICU comfort hand. It provides the security of having someone's hand on them, but since there are not enough nurses to have a hand on every baby at all times, this hand does the job in the absence of a real hand. He absolutely LOVES his hands...yes, there are two and I am fully aware of how silly they look :)

Sound asleep!