Since our journey with Nora began two and a half years ago many of our friends have long disappeared. Of course we miss them but we have come to terms with the fact that our necessary lifestyle isn’t conducive to many and it comes with a good deal of stress and responsibility that is just too much for some people to deal with. Unfortunately this is a very common thing that happens when a family has a child with serious medical issues. But I have to say that the friend I miss the most is sleep.
Nora’s sleeping patterns are far from consistent and scheduled regardless of our efforts. Getting her to sleep on a regular nap and bedtime schedule isn’t possible because if Nora has to poop anytime in the near future she cannot go to sleep. Even if she is very tired and wants to go to sleep it’s just not happening. Like last night, we had numerous rounds of snuggling and bedtime reading and poor Nora was so tired but her tummy kept churning and churning and wouldn’t let her sleep. So finally at 12:45am she went to sleep exhausted, and so were we. Then once she goes to sleep there’s the whole other issue of her waking every 2-3 hours for a bottle. This is something Nora has done ever since she was a tiny baby, regardless of how much TPN she gets and regardless of how much she’s eaten during the day. We talked to Nora’s GI doctors about her nighttime eating at her short bowel clinic appointment earlier in the month. They said if Nora was a typical child at this age they would recommend the tough love approach and let her cry it out to get her out of this pattern. But since every calorie counts with Nora then we should just continue to ride it out for Nora’s nutritional benefit. At this point I don’t think my body even remembers what it feels like to not be sleep deprived. So we’ll dream of a full nights sleep and know that our dear friend will return one day.
Besides the regular short bowel tummy aches and poop issues Nora has been chugging right along lately and continues to play the staring role of Super Nora. She’s put on a lot of height recently and finally gained all her weight back from what she lost when she was off TPN for almost 4 weeks back in June. Her weight was pretty much at a stand still for a couple of months so a forth night of TPN was added a little over a month ago. One more night of TPN along with Nora’s appetite getting better has made a big improvement in her weight. She’s still in the lower percentiles, between the 10th and 25th percentile for height at 34″ and in the 5th percentile for weight at just under 24lbs, but she’s healthy and growing and at least she’s on the charts.
When we took Nora up to her GI doctors in Birmingham at the beginning of the month it was somewhat of an uneventful trip and thankfully they agreed to space Nora’s next check up out six months instead of every three months like we had been. They usually like to see their patients more often but agreed that it’s in Nora’s best interest to travel less often since it is so stressful on her system. Even though she did do much better during the trip this time with eating and pooping when she needed to, once we got home she had liquid stools for two days which resulted in blood in her stool but thankfully that only happened once. Even though Nora’s system usually gets out of whack after a trip I was a bit surprised this time because she really did travel so much better than usual. We stopped every 1-2 hours to let her run around and she was even such a good girl to tell us if she wanted to get out just to “play” or to “poop”.
Here are some pictures of Nora from our trip stretching her legs at one of our favorite rest stops on the way to Birmingham where there’s lots of grassy areas to get some energy out.
(last pic, same day but after a pants change, playing peek-a-boo at an antique flea market)
Another thing discussed at Nora’s GI appointment was taking her off Omegaven at some point and just have her on TPN as part of intestinal rehabilitation, meaning seeing if Nora can absorb enough fat from her diet to not need it anymore. She’s not quite ready for this experiment yet and the thought of it does make me a bit nervous. But when the time comes her weight will be watched very closely as we don’t want to lose another 5 months to gaining back weight that was already worked hard to gain originally.
Have you been to our house? when I read about poop keeping poor Nora up I can completely relate. Our 21 month old William who also has short bowel syndrome, a feeding tube but no more TPN, is the same way. He can not sleep if he needs to poop. and if he passes out with a churning belly, we know there will be a late night diaper, possiibly sleeper and bedding change. I admire their strength, I could not imaging having my tummy make those noises – and sometimes I can look at his belly and see the intestines moving. Poor Little Ones.
I look forward to your updates – it’s nice to know we’re not alone in our struggle!
Susan from Canada
I am a 38 year old, suffering from short bowel syndrome. Now I am out of TPN and taking food from mouth. I can understand what little Nora will be going through. I hope Nora will come out of the need for TPN soon. Hope you guys can sleep through the night.
In my case it was my friends and family, who spent numerous sleepless nights and took care of me. Now I am under the treatment of a very good medical team.
Bless your hearts, hopefully you can catch a nap or two while we visit with Nora at Thanksgiving!!!