NICU Day #18 - Timothy's Ileostomy

Saturday, May 8, 2010

To say that today has been a rough ride would be an understatement.

Thank heaven that last night was a very sweet and peaceful one.

Arrival photos Friday, May 7, 2010

We had another absolutely WONDERFUL nurse! Jessica got us set up for kangaroo care immediately after I arrived around 9:30pm.

She brought the big blue chair - soooo much nicer than getting one of the hard wooden rocking chairs with the squeaks - and the screens. She also went above and beyond bringing in lots of warm blankets and checking on us about every 20 minutes to see if there was anything more she could do.

Two very sweet hours. I know I've said before, but there is something so special about the evening hours when only parents can visit and lights are dimmed.

I got to help with the midnight cares again. Very proud of my skills with the thermometer! I didn't get to help weigh Timmy because Jessica had already done that around 8:30pm. But I do think the weight I had for Timmy the night before - 1310g - was, in fact, accurate as Jessica told me that he was now 1370g - 3 pounds exactly!

Which probably helped today, or may have been the result of the problem.

Around 12:20 this afternoon, I received another phone call from the NICU. I spoke with one of the doctors who told me that the neonatal surgeon who examined Timmy this morning was very concerned with his abdomen and that he might need surgery. Would it be possible for me to come in? (Maybe she should have just asked me to come in...)

I was at the hospital by 12:40 and very relieved to see that Ellen was his day nurse again today. She told me what little she could - the x-ray from this morning was not much different from those of the last few days. While things didn't look obviously terrible, the x-rays definitely didn't look normal either. The surgeon had ordered another set and we were waiting for radiology to arrive. On a positive, Timmy's sodium levels were on the rise. Still not quite "within normal limits" yet, but going in the right direction.

Doctor Ahmed was the current attending neonatologist and she came in shortly as well to speak with me. We had never met prior so she asked me to give her my interpretation of what was going on, what I had been told... (It's all on the blog, so I won't rewrite.) She explained more about the x-rays when I asked exactly what they were seeing that didn't look quite right. There are certain patterns that they look for in the intestines, specific places that they would expect to find air pockets and how big they should be. Timmy did have the air pockets, but they weren't very big and weren't necessarily where the doctors would like to see them. We did discuss NEC a little more. (I have a link for more information on necrotizing enterocolitis in the previous post.) Still no air in his belly and blood work was all coming back normal. However, even she couldn't tell me much more other than that the NICU doctors were a bit perplexed as to why Timmy's abdomen was so distended and his sodium levels dropped. She then informed me that the surgeon wanted to see another set of x-rays and speak with me. However, she is apparently in high demand and was in surgery at TMC right then but would be back shortly, about the time the x-ray should be available.

She also told me that his sodium level for the morning was 129, which they were very happy about. His lowest was 117. I asked Ellen later what normal was and she told me that, again, it varies by baby's age and size but somewhere between 135-145 would be her estimate. So he's getting closer!

Here is Timmy getting set up for another KUB x-ray. (Conveniently enough, the radiology tech was leaving the elevator when I finished giving James the heads-up and I was able to follow her right back into the NICU.)

Doctor Cosentino, the pediatric surgeon, returned about 1:30pm. She looked at the x-rays before coming to speak with me. She was very nice and extremely professional. I was amazed from the start. I'm not sure that I could handle telling parents that I wanted to take their infant in for exploratory surgery, but she did. The second set of x-rays showed much the same bowel patterns, but she had also noted some spots on the x-rays that might indicate free air. Again, she wasn't able to determine specifically what was going on but, considering that Timmy's abdomen has been distended for about a week now, we had waited long enough and she felt very strongly that she needed to open him up to find out what was going on. She had also witnessed his drop in heart rate when she pushed on his belly. A few of the nurses had previously told me the same thing, including Ellen, and I mentioned that to her. I had no doubt of what she was telling me.

I really wanted to say no, no way was she going to slice my baby's belly open without a specifi cause, but, after listening to her and from what I had seen day after day going into the NICU, I really felt that she was right. We needed to do something. I wish she could have given another option. She did explain everything to me; there was a chance they would get in there and not find anything; there was a chance she would see parts of his intestines that were necrotic or perforated and may need to remove a portion. There was a chance that he would need a blood transfusion and the slightest chance that there would be a fatal outcome from the surgery. (She did tell me that the risk was low, but she had to make me aware.) Timmy would be put completely under and intubated, as his respiratory system is so small and fragile that the stress would likely be too much for his system to handle on its own. He may or may not come back intubated, but it was more likely than not. She was also of the impression that she needed to get in there as soon as possible. No scheduling, no debating, this was going to happen right now!

I really think that having gone through pPROM and being told 10 weeks ago that there was a good chance I would be kissing my baby goodbye within the next 2 weeks, not to mention the bleeding scares and repeat ultrasounds with low fluid, really helped me get through today. I also give huge credit to my friend JT (her first name is Jenn as well. Not the same Jenn mentioned in the last post. She also ruptured early on and delivered a beautiful baby girl the same day I delivered Timmy.) who told me that she had learned that you have to ride things out. It's easy to get freaked out and panic but, oftentimes, you just need to take a deep breath, keep thinking positively and wait a bit to know if there really is cause for hysterics.

After Dr. Cosentino left to get prepped for the surgery, I met the anesthesiologist who would be caring for Timmy, Dr. Badal. I have to say that there is something so extremely comforting in reading "Assistant professor" on his name badge. Definitely do not think I could handle someone learning on my baby!

He talked to me about the possibility for blood transfusion and asked numerous questions about family and Timmy's medical history - no known drug allergies, neither James nor I have ever had problems with anesthesia, diabetes came up, but didn't throw a red flag either. He stayed in the NICU while the nurses moved Timmy to one of the warmers for transport. Quite the production with everything he is connected to. Bless her heart, Ellen stayed with us for the move as well. Timmy was due for another infusion - I think antibiotics - and she wanted to make sure that whoever was in charge downstairs knew and would make sure he got what he needed, in the correct amount and when he needed it.

Once Timmy was ready and the OR nurses arrived, I got to go with them to take Timmy down to the OR on the 1st floor. We were met in the doorway to the OR by Dr. Nogami, who is an associate professor in anesthesiology. Dr. Badal had told me upstairs that Dr. Nagomi has also been a neonatologist. I liked him right away also. He shook my hand and immediately starting asking questions about Timmy's tubing sizes. He seemed very eager to get going as well. Not jumping the gun, just sensing the urgency of the situation. He also asked Timmy's weight and I was happy that I could answer that. I'm sure 3 pounds is a little better than 2!

At that point, Ellen caught my eye and told me that that was as far as she and I could go. She needed to get back to her other baby in the NICU and I needed to call James.

Let me throw in a huge thanks here to my neighbor, Melissa, for bringing me my pumping supplies and other stuff at that point so James could stay home with the other three kids and I could have something to keep me occupied for a while.

Dr. Cosentino had told me that the surgery would take between 2 and 3 hours. I had a few minutes alone with him before they started to prep him so I took some pictures.

His little belly. Hard to tell that it was enlarged in this photo,

but it was pretty obvious, even to me.

And a video.

Timmy was taken into the OR at 2:30pm. I returned to the NICU around 4:00. My new neighbors were there and extended their prayers and sympathy. We sat and chatted for a while. Around 4:30pm I was told I had a visitor. My sweet neighbor, Denise, whose son spent 101 days in the NICU as an infant and has seen his fair share of surgeries, came to be with me and offer her support. There was something just so comforting in having her there and having her know EXACTLY what I'm going through. In an odd twist of fate, she knew Dr. Cosentino from her own experience with Dorian, although he primarily saw one of her colleagues, Dr. Greenfeld. She said, "It would be just too odd if Timmy has the same thing..."

But it turns out he did!

Timmy was returned to the NICU just after 5:00pm. Just seeing him, watching him breathe and looking so peaceful brought me such relief. He was moved to the first pod where there is a little more room and he will have one nurse devoted to him. I will admit that I have shed a fair number of tears today - tears because I hated hearing that my baby needed surgery, tears that there was still a chance we wouldn't know what was going on with him, tears that his belly was already in pain and that it would still be in pain, albeit of a different kind, for a while and finally tears of relief because Dr. Cosentino had found something. We were right in doing the surgery.

She told me that a good portion of Timmy's large intestine was about 5-6x the size of normal. It was impacted and necrotic so she had taken it out. I asked her if she had removed all of his large intestine and she nodded, saying, "About half." The final segment (she had a diagram, but I can't specifically say the descending colon or be more specific as to exactly how much of what portion of the intestine remains or was removed) looked pristine, as though it had never been used. She then asked me if his first bowel movement had been induced. Yes. I know they have had to give him two slivers of suppository. I did tell her that I had personally changed a poop on Wednesday that was not induced and she asked me how much he had pooped. Really about a pea-size amount. She nodded that this all fit with what she saw.

At this point, she has sent a piece of the uppermost portion of the final segment to pathology to determine if there is some "webbing" that is blocking passage of fecal material. As it's the weekend, it will take a few days to know anything for certain. She said most likely by Wednesday. For now, Timmy's intestine is exiting through a small stoma (surgical opening) in his abdomen for excretion. We are hoping that the pathologists will be able to pinpoint a blockage at that junction. The other possibility is that Timmy has Hirshsprung's disease - basically, a portion of the intestine lacks the nerves that signal peristalsis, the body's way of moving food in its various forms, thus leaving the intestine unable to move fecal material through the intestine, causing impaction of stool. However, this is usual diagnosed by a rectal biopsy and Timmy is too small for one at this point. I believe Dr. Cosentino will do one in another six weeks. She told me that she didn't want to go into detail regarding Hirshsprungs at this point because there is a lot to discuss and there is no purpose in going into specifics (and freaking me out!) if there is a more simple explanation for Timmy's bowel obstruction.

She had already received another call to return to TMC for another surgery so I didn't want to detain her too long. She was very nice and did take the time to answer my questions and waited until I was ready to let her go. I just hope the surgery went as well for the next child. Honestly don't think I will ever be able to thank her enough for stepping in when she did. As much as no one wanted to see Timmy have to go through surgery, things would have been much worse if we had waited!

They told me he did really well during the surgery. No breathing problems and didn't require a transfusion during the surgery, although they did give him more blood in the NICU. His hands are a little swollen, but he's still just as cute as ever! No snuggle time tonight, but I'm still headed back to be there with my littlest handsome for a little while.

Many, many thanks to all the doctors and nurses who are taking care of our little boy. Carol and Janice both spent hours with him today as well drawing blood, moving monitors, helping his mommy. What a special person it takes to work in the NICU.

And this pretty much says it all.