Guys, I have to admit something. I am not as tough, strong, or as optimistic as I aim to present myself here as a blogger. In a lot of ways, our family has been dealt a crap hand. But even before I can finish thinking that thought, I feel the need to caveat it with something like, “it could have been so much worse! We are so lucky! Look at D!” But lately I’ve been more prone to metaphorically shake my fist at the sky and wonder, why us?
A typical morning scene – D quietly destroying his pump set up…
I think these feelings are bubbling up more because D’s closer to being 2 than he is to being 1, and 2 was supposed to be the magic age. It sounds so stupid now, but I remember hearing the anecdote that most preemies will catch up to their peers in everything by the time they’re 2, and feeling like D would beat that. When D got his G tube and everyone was asking when he would get it out, I would say, “oh I think by the time he’s 2.” Not going to happen; I’m afraid to even make another guess. Again, I have to say that all things considered, he’s doing so great. But he still has a long way to go, and I’m starting to make myself picture him going to Kindergarten with his G tube. Of course there’s no guarantee that he will still be reliant on it at that time (3ish years from now), but so far all signs are pointing to yes. And even admitting that feels like defeat, or like I’m giving up on him or something.
D had an appointment with his GI docs shortly after passing his last swallow study. I was so excited for that appointment, and it went pretty well. Of course his GI team was thrilled about the swallow study and also happy to see him walking around so steadily, and he had gained an appropriate amount of weight. I proudly told them how I had been giving him some of his 3 daily 10oz of ORS by mouth now that he could drink it, which allowed us to skip 1-2 daytime tube feedings. My plan was to get him to take enough in by mouth so that he could be off of his feeding tube during the bulk of the day and perhaps even go to preschool or daycare without the teachers having to use it.
Although the GI team agrees in theory with this plan, they don’t have any of the same motivations I have for getting him off the tube for any substantial period of time. They instead took the news that he would willingly drink the ORS as an opportunity to further increase his fluid intake, so now little D has to drink about 7 oz of ORS by mouth before we can start subtracting anything from the three (now increased to 12oz) tube feedings of ORS! I just feel so defeated – how can I possibly convince a toddler to willingly take in 42oz of ORS by mouth (which tastes like salt water) on top of the 36oz of concentrated formula he gets overnight, which I don’t even dare to dream about trying to reduce. I know many adults who struggle to drink 36oz of water a day!
I thought I had found a way around it all. I figured that at least we could keep his feeding tube and related issues outside of a school or daycare setting. The sheer volume his doctors want him to take in is making me admit that it is impossible. And accepting that means accepting that for real, this is a chronic condition. It is really not going to just disappear as a concern one day. It will be years and years and years before D and I sort out a way for him not to need to use his feeding tube.
The unfairness of it all is that if he just had to overcome prematurity, he’d be all set by now. After passing the swallow study, if he just had to overcome his brain injury, he’d at least be on the road to being all set. It’s the bout with NEC and the resulting short gut syndrome which will be the thorn in our sides forever. It’s not fair that he (all of us really) have to do this, but such is life. Mr T and I have put off the tube logistics in the near term and have started talking about how we can handle D’s sugar intolerance in the long-term. Sugar isn’t really an accepted allergen or anything. I don’t know how people will react when I tell them that he can’t have fruit, juice, baked goods… Will we still keep things with sugar in the house? If we don’t, is that fair to K to be deprived? Lots of things to still work out.
This post is a step towards the road of acceptance for me. Have you had to do course correction on your expectations for your LO or your LO’s development? For me it’s a continuing process, and seems to sneak up on me especially when I feel like I have a handle on it!
guest
Totally understand
My former 26 week preemie (twin) had a trach and feeding tube
She just turned 3 and her trach was taken out the week before her birthday
I always knew that the feeding tube would be the harder one to get rid of for that same reason
The tube is a blessing and a curse
It has helped her to grow and thrive
But she also old enough to know that we are going to feed her
So when she’s hungry – she often asks for her “belly food”
It’s also difficult because she has a history of aspiration even with thickened liquids so we are constantly balancing trying to give her oral feeds for practice and keeping her safe
Not to mention that she’s 3 and wants the “typical” 3 year old foods that her twin brother eats – not the purées that she is “allowed” to eat
But sometimes when I take a step back and think about how far she’s come
It helps me to be patient and trust that we are in someways on her timeline
She’ll get there when she’s ready
Good luck!!!
blogger / grapefruit / 4836 posts
I just want to send you a huge hug. You guys have had such a hard road already and that would take a toll on anyone. Your sweet D is so adorable and making so much progress.
wonderful pomelo / 30692 posts
Hugs, Mama!
It sounds so daunting and it totally sucks that you and your family have to deal with this. I think you're doing an amazing job with the crappy hand you've been dealt and D is so lucky to have you as his mom! 
cantaloupe / 6730 posts
Oh hugs, sweetie. Your family has been dealt a crap hand. Yes, others families have it worse, but that doesn’t change the crapiness of yours. I can see why you are feeling defeated – who would want to drink salt water?? I’m a little surprised there isn’t a better option for him to take by mouth. Hugs again, lots and lots of hugs.
kiwi / 511 posts
Hugs to you because yep you got a crap hand but you are working with it. And well if you have to fake it to make it then that is what you do, that is what so many parents do.
I don’t really have any helpful hints about the liquid/food intake I had a ton of issues with my youngest on that front but for totally different reasons so all I can say is I understand the frustration and wish you luck.
My youngest also has food allergies nuts and eggs. The difficult thing is my oldest loves eggs we used to give them to him all the time because we needed to put weight on him so all the fat was good for him. But he was so messy it just became a nightmare for me to keep eggs in the house. So to get around it I sometimes have special days with the oldest and have eggs while the youngest is not around or we go to get McDonalds egg breakfasts. It serves two purposes, the eldest gets some special attention and he doesn’t have total deprivation.
My sister and her husband did something similar since their daughter is allergic to peanuts, one of them would take the older two to Panera for PB&J dates.
blogger / pomelo / 5361 posts
Just sending you lots of love! You guys are doing an amazing job in really unfortunate circumstances.
honeydew / 7230 posts
Everything has been a course correction in our expectations! I’m beginning to think that’s the whole point of parenthood. From big things like infertility and IVF, to finding out we were having twins and all of the things we had to change in our minds to accommodate that new reality. Small things like not exclusively BFing, our own struggle with solids, ongoing sleep issues. I think it’s all the universe’s conspiracy to get me to admit I’m not control of any of the thingsa I thought I was! Keep up the good work mama. You’re doing an incredible job.
grapefruit / 4278 posts
You have every right to feel this way and I don’t think anyone would fault you for it. You’re not sitting around all day feeling sorry for yourself, but you’re allowed to grieve the loss of your expectations. You and your whole family will find a way to adapt and in the meantime, you are doing amazingly!
grapefruit / 4988 posts
Huge hugs!
Every time I read one of your updates, I think to myself what an amazing job you are doing under really challenging circumstances. D is lucky to have you as his mama!
blogger / cherry / 204 posts
I just want to say I think it so great to take time to “shake your fists at the sky”. In my little 6 weeks of NICU misery I remember feeling just as you described, so cautious to end everything with how grateful and lucky we really were (because we were) but I have moments now where I come across a beautiful birth story or even watch a scene of some normal birth on some tv show, and breakdown, because I never took the time to acknowledge how sad and disappointed I was. I think doing exactly what you’re doing is exactly what you need to do to find the acceptance you’re working towards.
pomelo / 5628 posts
It really does suck that the NEC is what is really holding D back (or hostage) because it “seems” like if you can overcome the other two factors, he should be perfectly fine. I think it is good to let your frustration and/or anger out. Sure, there will always be someone in a worse position, but that doesn’t mean that your position is any less worthy of attention.
I have a friend that would love to talk to you if you are ever interested. She has a 24 weeker with more serious Chronic Lung Disease than D. She has a background in therapy (psychology) and has transitioned to working mostly with mom of preemies and the like. Let me know if you’d ever like her contact info.
coconut / 8079 posts
@Mrs. Tiger: I have had some unexpected feelings crop back up now that T has turned 1 as I think back on his first year. It definitely did not go as planned and I don’t know that I’ve always allowed myself a few minutes once in a while to just be sad or disappointed, without feeling guilty. I’m working on it! Your posts always help me to think through things! Adjusting your expectations is so hard, even with the little things in life and you’ve had some very big stuff to work through. D and K are so blessed to have you as their mama.
@Mrs. Pom Pom: I love what you wrote. Hugs!
guest
First off, you are amazing! Second, we don’t have a sugar intolerance, we just don’t eat it. I know going to preschool in the fall will be a challenge. But my 33mo never eats it. At parties we skip the sugary treats, she doesn’t feel deprived. No one questions us, well except my mil who thinks I’m crazy.
blogger / eggplant / 11551 posts
I just wanted to give you a big big virtual hug…
You’re handling everything with so much grace in an incredibly difficult situation.
blogger / nectarine / 2043 posts
Ruby is about to turn 2, and I feel like I just recently (last 6 months or so) started to come out of all the mental crap that comes with having a NICU kid and all the possible development issues – and our case isn’t even dramatic! You are absolutely delt a crap hand and you have a right to be sad and pessimistic and defeated. But as others have said, I marvel at how amazing you are. You have so much to handle and even if you don’t always feel like you do it with patience and grace, your little boy is clearly happy and well adjusted and he will be OK, no matter what kind of timeline he ends up on.
pomegranate / 3225 posts
I’m so sorry. I wish I knew the magic inspirational/non cheesy thing to tell you to make you feel better but I know it doesn’t exist! Hugs to you and your family.
grapefruit / 4671 posts
Your courage and grace is just astounding. Big hugs, I think everyone needs to wallow, no way around it!
blogger / pomegranate / 3044 posts
@Rebecca: thanks so much for sharing your perspective! I’m glad your daughter’s trach is out, I obviously feel you on the g tube being a blessing/curse. I wonder a lot how D will react to his tube when he is a bit older, it’s interesting to hear how your daughter has worked it out – belly food!
@Grace: You know the weird thing is that he doesn’t mind the saltiness! I guess since he’s had barely any sugar in his life he doesn’t care for it (doesn’t like bananas, apple sauce, etc) and since the ORS is pretty much what he’s known, he’s fine with it. I do wonder how specialized his GI team is (no one else I’ve found online or elsewhere follows the same regime), and Mr T and I have talked about getting a second opinion at some point in the next year or so.
@Mrs.Maven: thanks for the great ideas for making the restrictions more of a special treat! And yes so frustrating – the three things you can’t make them do, eat sleep and poop
@twodoghouse: how true – everyone’s journey varies from their imagination!
@Mrs. Lion: @Adira: @Mrs. Blue: @kiddosc: @catlady: @Mrs. High Heels: @kml636: @plantains: I really appreciate all of your kinds words and support, thanks so much.
@Mrs. Pom Pom: Thanks mama. I think you’re right, it feels better to just let yourself really -feel- something sometimes, you know? I’m the same way about birth stories (or even talks about the first few months at home, or lazy newborn days, etc).
@Mrs Green Grass: I’m going to email you! As I mentioned to @Grace, I haven’t found enough other instances of kids post-surgical-NEC with short gut syndrome following this kind of intense schedule to compare. I have no idea if our doc is just insanely smart and good at managing it (per her reputation), or is over managing his symptoms, holding him to unrealistic standards, not recognizing the progress he’s made, etc.
@jhd: @Mrs. Carrot: thanks mamas. We’re all on different roads but I know you get it! What is it with milestones that make this bubble up?
@Jennifer: I’ve done the Whole30 and I know it’s possible – kudos to you! It just seems so different from how either of us were raised or even how we socialize (birthday cake being the prime example). D is allowed to have up to 3g of sugar a day and it is so shocking to see the vast amount of stuff (that isn’t intended to be sweet) that surpasses that, including almost all premade baby food!
blogger / pear / 1563 posts
I have nothing wise to say, but echo what everyone else has said! My biggest struggle with expectations has been with our infertility journey. Even though we haven’t had health issues for our kids like.you have had with D, I can relate to the grieving of how you thought things should or would be. Multiple times. It’d hard. I wish I could give you a big hug! Your sweet boy (and you) have so many cheerleaders!
grapefruit / 4712 posts
Big hugs momma.
I know I haven’t checked in a while. Just always remember that your feelings are completely justified. 
pea / 5 posts
I initially posted on the boards after reading your posts and it was because of you that I have learned to love this site. Everyone was absolutely wonderful in welcoming me but when I read your posts I just felt like you understood me. Today I had to just log in and reply because I totally understand your feelings here. My 8 year old son is special needs, autism & speech delay among other things thrown in there for fun. He still has therapists and still has problems and I finally accepted he will always need extra help. I wanted you to know that you are doing exactly what many of us special needs parents do. We say “it could have been worse” because it could have but we shouldn’t say it to minimize our situation. I feel like I sometimes do it as a coping mechanism. Other times I do it to “justify” or let other people know I’m well aware of other situations but I realized that I shouldn’t focus on that because my son’s situation is a big deal to ME. Allow yourself to feel what you are feeling. I want you to know that I too have those “due dates” or expectation dates and sometimes I do feel defeated and other times my son does so great it makes my heart burst. I don’t think it will never change no matter how much I tell myself not to do this to my emotions. I understand you and whatever happens don’t let yourself feel bad for too long. I give myself one day or week depending how bad things are to cry and be angry or feel what I’m feeling and after that time it’s over. I don’t let myself keep feeling hurt, angry or anything negative regarding that specific situation. Easier said than done but it makes my life so much more positive. I will also have to live with uncertain situations for the rest of our lives so I have to have angry moments for myself as opposed to before when I was angry all the time. Let it go is the new motto in our house. I cry, scream, get angry, let the feeling break my heart, then LET IT GO, pull my heart and myself together and do it all over again. Big hugs super momma!
Here's hoping you fel better soon…
blogger / apricot / 310 posts
I love honest posts like this – thank you for sharing this. Sending you so much love.
blogger / pomegranate / 3044 posts
@Mrs. Pinata: @MrsRcCar: @Mrs. Milk: thanks mamas!
@Mrs. Airbrush: I agree, its totally a coping mechanism. Thanks for the great advice and kind words, you are so sweet!
pomelo / 5678 posts
@Mrs. Tiger: hang in there mrs.T!
pomegranate / 3533 posts
It’s completely normal for you to feel exhausted, even defeated at times! You are an amazing mom. Lots of good things still to come for D!
pomegranate / 3127 posts
Hugs! You’re doing a great job, even when you feel otherwise. You really are. And there are going to be so many moments when he does something you’ve been waiting for a long time, and you can let go of another worry.
apple seed / 2 posts
I know you want to stay positive and people always try to tell you it could be worse (and it certainly can) but don’t let that invalidate your feelings and struggles. They are very real to you and it is all relative! You are allowed to feel defeated, and no one else has your exact hardships and those that have it worse I don’t think would ever expect you to discount how hard it is for you!
My nephew has pretty severe short gut, so I love following your posts and getting some further insights into your world! You are amazing and strong and I love what you add to this site.
Not exactly the same thing since sugar isn’t all that healthy anyway, but the only two cents I can add is about having sugar in the house when D can’t have any – I have a severe egg & chicken allergy which can be pretty limiting with meals esp sweets. Might be a little difficult in the toddler years, but growing up I never cared that my siblings were able to eat stuff I couldn’t. My parents still cooked meals I couldn’t have and just made me something special I liked :). You really lose taste/interest in the things you can’t have especially if it makes you sick. I never mind not being able to eat something but always feel really bad when my allergy affected other people as well (like they didn’t eat/make something on my account).
coconut / 8430 posts
Sending big hugs to you. You are an amazing person and an amazing mom to your little guys.
blogger / pomegranate / 3044 posts
@Greentea: @FliegepilzHut: @sunny: thanks loves!
@Mama Bird: so true, those moments are the best!
@dpow: thanks so much for joining to make your comment
I’m glad that me sharing D’s short gut experience is helpful to you! It can be a lonely road, it doesn’t seem to be very common, although NEC is fairly common among preemies. Thanks for your perspective on allergies, that’s pretty much how we operate now, but it’s easier since now D gets “baby food” … I think it may be harder to draw that line in the sand when he’s older!