Laura's Story\

Laura’s Story – Part 31 – Fun and Frustration

Once we found a way to get some fluid into Laura, it was time to start trying her on solid food! We bought some baby cereal and tried a few different kinds until Laura fell in love with one called Mixed Grains and Fruit. We found that she would slurp up the cereal but then most of it would dribble out of her mouth. That’s when we had the brilliant idea of sticking her  soother in her mouth to help her swallow. It worked really well and she started having about 2-4 Tbs of cereal a day! This really helped us get her the calories and fluid that she needed (we used breast milk in the cereal so every ml of breast milk that went into the cereal counted towards her fluid intake).

Laura had to have a certain amount of fluid every day to help flush the medications out of her system-otherwise her kidneys could be damaged. At this point she was having about 200 of her 700 mls of required fluid through the preemie ng tube/soother method and the rest went through her feeding tube. As the days went on, Laura stopped doing as well with her eating. The little ng tube had to placed perfectly along her soother or she would spit it out – we were growing more and more frustrated and the amount of milk she was drinking by mouth was decreasing each day.

The worst part of the NG tube was that she pulled it out at least once every other day requiring us to hold her down and force the tube back down her throat via her nose. She hated it and I hated that it seemed as if all I was ever doing was giving her needles or torturing her with the silly feeding tube.

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After pulling the NG tube

Our days were taken up by meds, naps and feeding (which was taking upwards of an hour) and we never really got the time to play with Laura. Developmentally she was behind but we hardly had the time to allow her to play and learn.

We were so tired from getting up multiple times a night and having so much responsibility with medications, clinic appointments and feeding issues that we desperately needed something to change.

After a few days of poor eating, we decided to try to feed Laura her milk the same way she took her cereal – we put some milk on her spoon, put it in her mouth and then shoved her soother in before the milk dribbled out. She swallowed! It took both of us – one to feed with the spoon and the other to do the work with the soother but she took about 30 mls and it was SO much faster than the little ng tube – it only took about 10 minutes where the other method would have taken half an hour for the same amount of fluid.

This became how we fed Laura. After a couple of days we figure out how to do it alone but it was the same process, fill the spoon, put it in her mouth and then put the soother in for her to swallow. We would feed her every three hours with her spoon and soother and then top up with the NG tube as needed (usually once in the morning and then overnight feeds). We fed her in the little swing but that became pretty taxing on the back so, with her balance improving, we decided to buy a high chair for her. That made the feeding process so much easier!

Now that we had some more time on our hands, it was time to really focus on playing with Laura and enjoying having her at home with us! One of my friends had lent us a jolly jumper and the first time we put Laura in she didn’t really know what to do. It took her a good week to figure out that she could bounce but once she realized how much fun it was, there was no stopping her! She loved the jolly jumper and we could see her legs getting stronger by the day. By her 6 month birthday, Laura was able to move around pretty well in the jolly jumper and she had full neck support while upright which was a big achievement for her!

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Her 6 month birthday also brought with it another surprise! That day, she pulled her NG tube out again but when I went to re-insert it at night, it was just not happening. We decided to give her a try without it. This meant that we would get up with her every 2 hours to feed her to make sure she received enough fluid for the 24 hour period.

After waking up every 2 hours overnight and feeding her every 3 hours during the day, Laura fell 15 mls shy of her target – that’s 1 Tbs – not bad at all! We decided that if she could do it once, she could do it again. That was the last time I ever saw her with an NG tube.

We were given the break we needed. No more feeding tube meant that we had to wake up a bit more and be really diligent with measuring her fluid but it was all worth it to be rid of the tube. We were able to start really focusing on playing, singing, reading and physio like we had wanted. Finally, we felt a little more at ease and were able to relax a little bit and enjoy Laura’s company.

 

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