I have been slacking a bit in regards to updating my blog. I usually update my blog at night while doing Wysdom's ng feeds. It really is my only quiet time. Julian and I share the shifts as they each take an hour plus. I do the 12:00am shift which has me awake from about 12am to 2am on a good night, or 3-4am on a bad night. Lately we have had a couple of bad nights where Wysdom has been extra fussy or having some reflux so I have traded in blogging for sleep and have not posted as often as I would like.
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Anyways, where should I begin. I have had a couple of meltdowns over the last couple of weeks. All most all of them have to do with feeding. I find the feeding issue to be such a hard one to deal with. As most of you know, Wysdom has been NG fed since birth. Currently I am working with a feeding team that consists of a dietitian, a SP and an OT. We meet weekly to talk about Wysdom's goals ect. A meeting a couple of weeks ago ended in frustration and tears for me around the fact that I am overwhelmed with trying to feed Wysdom. I don't know if feeding is a very sensitive issue for all moms, but it sure is for me. Could it be that because I am in the field of nutrition, I feel extra frustrated? Maybe! With Blyss I made homemade baby food from millet and quinoa and gave her lots of healthy options. With Wysdom I feel like I am trying my hardest to teach him how to eat cereal and fruits, but it is a slow process. I think part of it is that I feel like I am against a clock and the clock says "teach him now or get a g tube". I know that a g tube is not an awful thing, but to me it just feels like I couldn't do it-feed him. It feels like I have tried all of these months and failed. I have heard of all of these stories about babies having more stamina and eating after OHS and therefore not needing tube feeding. We just can't get there yet! Not only is it that we have to still do tube feedings, but it is the fact that I have to make the decision. I have to decide to do choose another surgery! To be honest this gets to me. Maybe if he hadn't just come out of OHS 5 months ago, it would feel different? Maybe if he didn't seem to get every possible complication in the world, it would feel different? I should feel so strong after going through OHS and this should feel like nothing,,.but it doesn't. I just feel a huge weight on my shoulders that I can't really describe. So this past Tuesday after a lot of thought, research and talking to other moms, we met with a surgeon and have chosen to get a g tube for Wysdom. On our way home after the consultation with the surgeon, I cried. Sometimes I really do feel like I am loosing it. I mean crying about booking a surgery, come on.:) So the date should be in October and I am trying to keep faith that it will be a great thing for Wysdom. One really neat thing that has happened out of all my frustration and tears is that our OT created a slip of paper where I can rate each feed. At the end of the feed I get to circle a number to refer to how well he did. At the end of the month we get to look them over and count them up. She is certain that it will be much more positive that I think. In a way this process has allowed me to move on after each feed by posting a simple comment. Then for each new feed I feel like the slate is wiped clean and we get to start again. I think this is a much more positive spin on feeding then the team just asking me each week how much he ate. I am sure Wysdom can feel the change as well.
On Friday we went the Hospital for Sick Kids to have our plastic surgeon consult. Pretty good news on that front. We have to massage Wysdom's scar on his forehead about 6 times a day. There is a raised ridge in the middle of the scar that has hardened. The plastic surgeon doesn't know if this will go away or not, but right now we have to rub it and hopefully it will flatten out on it's own or we could look at another surgery in the future. However right now they are very pleased with how well the hole closed and how it is healing. So we are hopeful that it will continue to heal well over the next 12 months.
On a home front we are working on trying to sit. Wysdom has been making some progress in this area. He has to really work on his shoulder strength and back strength to be able to sit. So we have been given all these neat and far out toys to help him to learn to put pressure on his arms and to develop his shoulder muscles. One is called the "flyer" Just imagine spinning around on your tummy in a circle! I am sure as he gets older he will love it. Now it's just a little strange. Blyss had taken to becoming his little therapist and advocate. She even had her own question for the surgeon on Tuesday. You could imagine the surgeons surprise when she confidently asked "Will he be able to go on his tummy after the tube?" (meaning g tube). What a loving girl Blyss is with her brother. Wysdom continues to amaze us with all of his smiles, babbling and fancy foot work and toe dexterity!!
Finally last week Julian and I took the kids to a local animal park. As we were walking I was talking to Julian about feeling a bit out of it. Meaning that it felt weird to be out and socializing as we are at home a lot due to the feeds and reflux issues. I have been feeling a little isolated. Wouldn't you know that life provided a scenario in the next few minutes where I get to meet a lovely mom with several children, one who happens to have down syndrome. It was so nice to connect with her and her family just at the moment when I needed it. I don't know what you would call it? Faith, God, Universe, Intention, Law of Attraction...whichever it is I will take it! Just after I wrote this draft, Wysdom had his best feeding time yet!! Now if I could just erase the $100 ticket that I got this morning for failing to stop properly at a stop sign....Ugh!!!
I thought I would include some pictures of the fun stuff that is happening around our house. Wysdom and Blyss are getting along great.
Wysdom is starting to take some solids like, cereal, fruit and veggies. One thing that Blyss loves to do is to play with Wysdom. Feeding time is no exception...she loves her brother and wants to get involved in whatever he is doing.
