Rough nights in Joshua land

For about three weeks now Joshua has been having multiple painful pooping sessions a night which make for a very unpleasant nocturnal experience for both mommy and son.  This coincided with Josh's introduction to rice cereal so we stopped the rice cereal for 10 days, but unfortunately things have not improved.  He will wake up screaming sometimes 45 minutes prior to actually pooping with what I can only assume is terrible cramping.  I can hear and feel his little tummy building up to the poop and I just wish so badly that I could make it happen sooner and relieve his discomfort.  There is little I can do to console Joshua during one of these episodes.  I stroke his head, sing softly to him, rub his belly - anything I can think of that might distract him from the unpleasantness, but nothing really helps.  He gets so worked up that even after the number two is over and done with, he is still so upset and can't go back to sleep without significant effort on my part.  Some episodes involve hysterical crying to the point he struggles to catch his breath and I have to whack him on the back.  We made the somewhat difficult decision to put Joshua in the bed with me so I can simply roll over when these episodes occur.  I did not want to start the bad habit of having Joshua sleep with me, but it has been the only way all three of us are able to get any sleep.  The absolute best sleep we get is when I pull Joshua on my chest to calm him down.  I haven't been able to get that kind of deep sleep since July so bad habit or not, I'm going with it - this is survival folks.   

I have spoken to the GI doctors before about the painful bowel movements, but they kind of blew it off and said all babies experience discomfort while pooping as they learn to use new muscles.  That answer is a bunch of crap if you ask me, no pun intended.  I think it boils down to the fact that the doctors don't know what babies with short bowel syndrome and missing their ileocecal valves actually feel like and they don't want to admit it.  All the emphasis is put on knowing the exact combination of nutrients required for growth, the exact length of healthy bowel left, the precise amounts of weight gain and so on.  How about the questions like what is my little boy going through when he screams and writhes in agony during multiple stools a day and how will my son's quality of life be affected long term?  The doctors have stressed that Joshua's intestines will continue to grow and adapt in time so he will no longer require the IV fluids.  However, his ileocecal valve was permanently removed and I am just beginning to understand the possible implications of this unfortunate occurrence.  The ileocecal valve (ICV) is the only portion of the GI tract that absorbs Vitamin B12 and it regulates the flow of stool from the small intestine into the colon, as well as prevents backflow of bacteria from the colon into the small bowel.  People who lost their ICV's as adults report severe lethargy in addition to persistent diarrhea and lack of warning prior to bowel movements.  We just don't know what the consequences for Joshua will be in the long run and for now he can't tell us what he is feeling.  My worries for Joshua are intense and constant, I just want him to be able to experience a normal healthy life. 

The prince on his throne in our bed.

 
Needless to say, I have been struggling lately to keep an optimistic spirit.  I am so friggin' tired of watching my son suffer night after night.  I have witnessed him suffer every single day of his life and I am starting to feel like it will never end.  I know people don't want to hear this type of news.  People want to think that because we are home and Joshua is getting bigger and smiles a lot that he is all better.  I wish this were the case, but the reality is we are still so far from Joshua being a healthy child.  On Friday we will go up on feeds to 70 mm of milk every 3 hours.  This was the landmark Joshua reached at the end of August the day of his tragic malrotation incident.  For seven months we have been battling to get back up to the same amount of milk Josh was able to take when he was a month old.  It's pretty depressing to think about.  To top if off, I weighed Joshua yesterday because it has been about a month since his last weigh in and we are not scheduled to go back to Egleston until April 12th.  According to our scale at home Joshua was 16 pounds even the first time and 16.2 pounds the second which means he has lost weight in the last month.  This is very disturbing news since it means the drop in the rate of his IV fluids last month has resulted in a halt in his growth.  Now I question whether we will make any progress at all at his next doctor's visit since they base everything on weight gain. 


And don't even get me started on the bureaucratic nightmare I am in the middle of trying to get Joshua government benefits and physical therapy.  I have been attempting to accomplish both these things since January and the process is maddening.  A nurse practitioner visited our home in January to assess Joshua for acceptance into the Babies Can't Wait program that will provide hin with physical therapy and also occupational and speech therapies if he needs them.  They have a 45 day admission period so Joshua should have started the program at the beginning of March since the nurse practitioner told me he would definitely qualify for services based on his medical condition and gross motor delays.  I started making noises in mid March when I hadn't heard from anyone at Babies Can't Wait and I eventually learned that the nurse practitioner never turned in the referral from her evaluation so no one at the program had ever heard of Joshua.  What?!  My child has been waiting for two months to get therapy he desperately needs and you are telling me he has to wait another two months because someone forgot to turn in paperwork?  [Insert foul language here] Joshua is behind on just about every aspect of his gross motor development including sitting up, crawling, bearing weight on his feet, etc.  He is now slated to start therapy in late April, much to my dismay. 

Despite all my fears for him, the rough nights, and my negativity surrounding his recovery process, Joshua continues to wake up with a smile on his face every morning and brightens every aspect of my day.  He is such a trooper and I am fiercely proud of him.  Joshua had his first visit to a park last week when the weather was nice and we am so looking forward to more outdoor activities once spring finally settles in.

Adventures with cereal!

I know I have been terribly negligent in keeping the blog updated recently.  Happily, this is because things have been status quo around here - no major news to report.  And that is just the way we like it! 

Joshua has been enjoying lunches out with friends and seems to really be stimulated by being out and about.  He charms the ladies wherever we go!   People love it when he smiles at them.  They turn to the person next to them and excitedly report - "he smiled at me!".  I think it makes them feel special so I hate to burst their bubble and let them know he smiles at everyone.  Literally everyone.  He is such a sweet, sociable baby.

On Friday we went back to Egleston for a follow up appointment at the GI clinic.  Joshua had gained one pound since our last visit 4 weeks ago.  He is up to 16 lbs. 6 oz.  The doctors were very pleased with this rate of weight gain since they only expected him to gain half a pound based on the calories he is getting.  I interpret this to mean his body is absorbing more of the nutrients from his milk than expected which is wonderful news!  The doctors reduced the rate of his IV fluids so Joshua is now at a 50/50 ratio of calories from milk vs. fluids.  We have to work this down to 100/0 before he can have the central line removed.  We are making progress.  The big news of the visit was the approval to start giving Joshua as much rice cereal as he wants.  Woohoo - semi solid food!   For now Joshua is getting 2 oz. of breastmilk + hypoallergenic formula mixture eight times a day with rice cereal mixed into two bottles and fed in solid form twice a day. 

The big rice cereal introduction was yesterday.  It was the first time for Joshua to sit in his highchair and eat solid food!  Just like everything so far, he was willing to give it a try.  I still can't tell if he really likes it.  He opens his mouth readily enough, but the faces he makes when the rice cereal goes in are quite unpleasant.  It will be fun to start introducing the good baby food when he is ready.