Saturday, September 19, 2009

Slacking a bit...weekly updates

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.

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!!!


Stephanie said...

Aww hugs to you Mama. You're doing a fantastic job with Wysdom and he'll get there! Don't be so hard on yourself; you've failed at nothing. You're a great mama to both wysdom and blyss. And what a precious story about Blyss and the surgeon. What a great little advocate she is :)

Sara P said...

you are a great mom! i completely agree with stephanie. i know how you feel about being a failure,... your not. i felt the same way with max not being able to nurse at first. i can't say i have gone through what you have, but i can say i understand. that is wonderful news about his scar:) scar or no scar he is so handsome:) - but great news on that:) hey, and thanks for the update:)

ch said...

LC had SIGNIFICANT oral aversion due to the NG was constantly gagging her and irritating her acid reflux because, with the NG tube in place, her stomach couldn't close off and keep the acid in her tummy where it belonged.

I was SO frustrated trying pacifiers and EVERY NIPPLE STYLE AND DESIGN KNOWN TO MANKIND. I tried thickened liquids, thinned baby foods, Y cut nipples with rice name it.

LC had her Gtube placed on April 1st. I can honestly say that, since then, her acid reflux has been a complete non issue and she's eating a wide spectrum of foods...solids, crunchy solids, soft solids, etc.

It is OKAY to tell the therapists working with you on this to BACK OFF. I finally said I had every confidence that LC was healthy and thriving and if she was going to get her calories in an alternative mode of munching then, so be it. I honestly didn't feel like I was giving up on her. I felt, for the first time really, that I was standing up FOR her.

He's healthy.

He's happy.

You're doing incredible things in a wide variety of developmental areas.

YOU are in charge and he isn't being deprived in the slightest. You aren't spoiling him by not forcing things into a mouth that knows a swallow is also a door that opens for acid to come up.

If you want to pursue the feeding, etc. right now you are absolutely entitled to do that. But I want you to hear someone giving you permission to excuse yourself from it, too. It isn't neglectful, or dismissive, or throwing in the towel. You can say that you're moving towards a long-term situation with the Gtube that you know is going to drastically change how this all operates and you'd rather his therapy time be focused elsewhere for now.

You're doing great...and i PROMISE you things are about to feel a whole lot breezier.

Thinking about you...

Alaina and Kyle said...

Oh... I know how frustrating it can be at feeding time. It feels extra long sometimes when they seem to take an hour to get the feed finished. I do have to say that the g-tube is very easy and easy to hide (which I love!!). It sure has helped at night to have a continous feed go over night as well, so I only have to wake up once and that is to put more food in the bag to go the next 4 hours and change his diaper. Beau sleeps right through it most of the time. Just think that someday all this will be behind us and our boys will be grown and eating all by themselves. They will get there... it's just more TIME!!

My name is Sarah said...

This is Joyce. Hugs and more hugs coming your way. This road is not an easy one, that's for sure. You are so right to take the small moments such as meetng another family as a pick me up. Hang in there:)

Michelle said...

Thank you for your comment; I'm sorry to hear about your dad's dx as well and he'll be in my prayers.

I'm sorry to hear of the frustrations with Wysdom's feeding issues - don't be too hard on yourself (although I know it's easier said then done!) just know that you're doing what you can.

Gabriel and Alyssa said...

Gtube can definitely be a relief. Are they doing a nissen with it? You are doing a great job. Remember happy mom means happy baby.

Beth said...

Sasha, if there is anything I can do for you, please don't hesitate to let me know. I'm happy to make you a meal or to play with Blyss while you take a walk or go somewhere with Wysdom.

I think you are an incredible mother. You inspire me - truly. I may have told you this before, but I'll say it again: in Judaism, we have a teaching that children's souls choose what parents they wish to be born to. I think that Wysdom made a wonderful choice when he chose you and Julian. He is a happy, beautiful baby - that means that he is being loved and nurtured by his parents.

You guys are in my prayers, always!

Carrie said...

Sometimes it all seems overwhelming, doesn't it? But I think you are doing fabulous and doing what is best for your baby. I love how Blyss is getting involved in Wysdom's care--what a great sister she must be.

Beverly said...

You are doing a great job! Wysdom is so lucky to have you! sending prayers!

Brandie said...

That must have been a very hard decision for you. I have heard of mom's mixing up really healthy foods/supplements to put in their kid's gtube. Stuff that most kids would never eat. Beth's comment brought tears to my eyes, so true.

Anonymous said...

Hugs and more hugs to you. You are doing a great job with Wysdom. What little boy could ask for anything more. Sending prayers and blessings your way.

Tausha said...

Sorry to hear about the feeding frustrations. Just be patient, I know that's easier said then done but you are doing the best you can and all you can do. It's okay to break down once and awhile, it gets the frustration's out sometimes.

Crying Baby Help said...

Reflux may trigger the baby to cry but in order to prevent it, there are ways to follow such as keeping the baby upright after feeding, using wedge pillows and trying not to lie the baby after feeding. In a way this can help to stop the baby crying.