When you become a parent you quickly learn what your most important responsibilities are to your new baby and their order of importance. Number one, you keep them safe. Away from harm, away from sickness, away from anything that will make them feel like they are insecure in your arms. Number two, you keep them nourished, you feed them. Everything else after these two are small in comparison. Diaper changes matter more to the parent than they do to the baby and having a baby sit in a diaper for too long certainly won’t change their future too much. Toys and entertainment are important, but more so later when the child becomes more interactive. Sleep, well, at first they just sleep when they are tired and you have absolutely no control over how that’s going to go. So it really boils down to these first two responsibilities, and if you can’t see them through, that’s a parental epic fail.
I’ve felt like an epic fail since Aleck was two months old. That’s when I first started to address the problem of Aleck’s eating, or lack of eating. First I called a lactation consultant, she sent me to a speech pathologist, we went to see a GI, he had his lungs scoped and throat checked by an ENT, we saw another speech & feeding specialist, we have a nutritionist, we are now seeing another speech & feeding specialist, we went back to our ENT, we are getting recommendations for new GI’s, we go back and forth to our pediatrician, we tried an NG tube, we tried an NJ tube, we add olive oil to his food, we add corn syrup and calorie boosters to his bottles, we feed him avocado every day, we feed him full fat yogurt, we feed him chocolate pudding, we give him apple juice non stop, we add butter to his fruit, we’ve fed him at 11pm, we’ve fed him at 2:45am, we’ve tried feeding him every four hours, we’ve run out of options.
In the last month Aleck has lost 4 ounces. That’s not a lot for other babies, but for Aleck it’s huge. He spent the second half of December throwing up most of his feeds, both during the middle of the night and during the day. Sometimes it’s because he chokes on a Cheerio, sometimes its because his daddy made him laugh really hard after a big lunch, sometimes its during a nap, sometimes its after a nap, sometimes its in the middle of the night, sometimes its while he’s sitting in his high chair, it always feels like a huge failure. Right now his tummy is gone, his ribs are poking through his clothes, his legs and arms look like string beans, his face is pretty gaunt. He’s 15 months old and he’s eating the amount a 3 month old would eat, weighing like a 5 month old.
Since Aleck was two weeks old I’ve been concerned about his breathing. I heard his smooth newborn breathing change when he was two weeks old and immediately contacted our pediatrician at the time. They told me it was the acid reflux. My sister said he sounded like a pug, “He’s a mouth breather Lynnie, just like you were.” We laughed it off. When they scoped him in February nobody noticed anything usual about his nose. He has a level one cleft in his larynx and laryngomalacia, so he was put on medication and we thickened his feeds with rice. Then we switched from rice to oatmeal because the rice was backing him up. Then we brought down the amount of oatmeal because it was filling him up too much. Then we cut out the oatmeal altogether but he still wasn’t consuming nearly as much as he should be. We brought in the first feeding specialist. He stopped eating when were in the RIC so we put in the NG tube. After a few days his appetite picked up and he was consuming more than he did at home. Then we switched to the NJ since the only time to feed him through the tube was when he was sleeping since his appetite was going great, and they did a real number on Aleck’s nose. Poking and prodding that tiny little nose until he puked up blood on the table in radiology. Even after the tube was placed successfully Aleck was throwing up the feeds and pushing the tube out of his nose regularly. When we came home he threw it up and I pulled it out.
After a few weeks I dragged him to the pediatrician since his nose had been running for almost 6 weeks. He thought it might be because of the damage from the tubes, give it a few more weeks. After a month of being feeding tube free with a nose still full of snot, I called the ENT. Being the middle of December, days away from Christmas, the first appointment I could get was for this past Tuesday. I brought Aleck in and they scoped up his nose. His adnoids are so large they are completely blocking his nose. The poor little man can’t breathe. I laughed. I laughed because they need to come out. I laughed because we are having surgery now on Wednesday to remove his adnoids and maybe even his tonsils. I laughed because it took my family until I was in high school to get mine out and I suffered a continuously sick childhood because of these damn things in my body. I laughed because I was ranting that Aleck’s eating issues had to be related to his breathing a month ago. I ranted to the nursed at the RIC, I ranted to my therapists, I even ranted to another doctor in my pediatrician’s practice who had the nerve to suggest that a hungry kid will eat even if they can’t breathe. That pediatrician doesn’t know my son. I suggested that the next time he return a parent’s phone call he familiarizes himself with that child before dialing. Because Aleck hasn’t eaten well for his entire life.
And you wouldn’t believe the number of people who have directly or inadvertently suggested that it’s my fault that Aleck doesn’t eat well. If another person tells me it’s because he “senses my stress” I will gouge out their eyeballs, I really will. I make sure that eating time is fun and I’ve done this for months on end. We sit in only relaxing positions to take his bottle, looking out the window of his bedroom or watching Sesame street. I let my mind wander, refusing to concentrate on the bottle. I smile at him and stroke his head playing with his hair. I softly tell him he’s a good boy and give him kisses on the cheek. In between gulps we read books or play with puzzles just so I can maybe coax him to take a little more after some activity. I can’t make it anymore relaxed than it is. When he’s in the high chair he’s got toys to play with on his table, we mix up the textures with the purees, we laugh, we have fun, he still doesn’t eat a lot. We try sippy cups instead of bottles, open up the bottles and let him drink them like cups, and when he refuses, we move on to other things. Trust me, feeding time at our house is a stress free environment that I’ve worked very hard to create, but it doesn’t help.
This has to help. This has to work. This surgery has to make a difference. My baby is wasting away. My baby is disappearing before my eyes and to make matters worse my baby has a cold on top of it all. So right now he’s eating almost nothing. It makes me sick to my stomach. It makes me want to cry and bang my head against something really hard like the mantle of my fireplace. We have to get him healthy for Wednesday, we have to get through this surgery right away. Each time Aleck doesn’t drink his bottle or eat his yogurt it’s like pieces of me are being chipped away. Each time he throws up his food it’s like a vacuum sucking the life out of me. I’m running out of me. I just can’t fail at this anymore. I can’t fail at the number two job I have in the world, feeding my child. After this the next step is a surgical feeding tube and right now I don’t see how we can avoid it. Hell, I was practically begging for it right before we left the RIC but nobody was ready to take that drastic step. But mark my words, if he’s not eating better two weeks after his surgery he will get a surgical feeding tube if I have to be the one to surgically put it in him. I can’t lose my child. We’ve worked too hard to go backwards. We’ve come too far to lose him now. This can’t be the way it’s going to go, I refuse to let it get there. So please, say a prayer for us on Wednesday as we go back to Lurie for yet another surgery (his third in life so far) and hope upon hope that our little man gets his appetite really, really, really soon.
LIN is is NOT you , YOU are NOT a failure or gonna fail…………its medicine when they finally figure our lil ALECK out he WILL be better……..ill start praying for his wednesday surgery, but i do nightly …..i rem when raising my gradnson and 2 daughters they shut off our power i was frantic i was poor i didint need a baby, how could i feed him with no power.. BUT God gave him to us……..and now when that same grandsons wife can NOT get pregnant i rem calling the power company beggin/crying etc……..and got someone who said ‘enjoy him i cant have babies’ i willl turn your power on’……..so i know in my heart ALECK is supposed to be here and w/you and his daddy and what all……. he will start to floriish……..think of his early breathing………as his MOMMY……….trust YOUR instincts<3
Mazeltov Mommy x0x0x
You are NOT failing. You guys are the best parents that lucky little kid could have. He’s a trooper and he is going to get better after this surgery. Ill be thinking of you guys…
Lynny,
I am a buddhist. I pray everyday. I will be praying for you and your husband and Aleck. you are so strong and so smart. people are listening and reading. love is all around you. Nam Myoho Renge Kyo. this is the profound and mystic law of cause and effect. you are making causes of love for your child’s recovery. the effects will show. xooxoxoxxo. one day we will chant together. call me anytime. sara.
Lynn!!! You are THE BEST mommy out there!!!! If every parent I worked with were like you I would be in heaven!!!! Asher had his adenoids out – he was 90% blocked- it helped him. Good luck to Aleck, he’ll be amazing, he always is!!!
Lynn please you and Craig are the BEST! You have done everything for this child and will continue to do so. He is so lucky to have you! Do not feel this way, it is totally backwards and ridiculous!!! We are thinking of you guys!!
Dearest Lynnie
Of all the people I have known, you are the furthest from a failure. To fail is not possible for you.
That you have fought for this little boy and taken this far is an epic WIN.
I have no doubt he will do well with you two standing watch over him.
Halina and I love you all. We will say a special prayer for you.
I know that even if all your loved ones tell you that it’s NOT your fault, it won’t matter. I understand that! However, you & your hubby are amazing parents. You are doing all the right thing’s. Many people & mostly, parents could learn a lot from the two of you. This is not your fault! Feeling so hopeless, would make anyone feel like it’s their fault. I’m so sorry you guys have been dealing with so much 🙁 I love you all & think about you all the time!!!! He’s a strong, determined, little fighter 🙂 Just like his parents. Love you!!!!
Lynnie –
I can relate to feeling like a failure on the feeding front. While clearly nowhere near as severe as Aleck, Zach struggles to gain weight and barely eats anything. Mealtime is so stressful for me and it sounds like you are doing everything in your power to help him grow. I pray the surgery (which should hopefully be the easiest of the three) will help and get him back on track. Hopefully he will enjoy his ice cream and pudding afterwards and be on his way to growing more. Good luck with the surgery.
Hugs,
Lauren
Oh guys,
I’m so so sorry you have to go through this (again). I am hoping with every fiber in my being that this makes life easier for him, that he can breathe and eat easier after this. I know that’s all you want, for him to be healthy and thriving and comfortable. My heart breaks that you guys are going through what most of us could never comprehend, but we are all here for you, with you, and cheering on the little guy every step of the way xo
Oh Lynn… You are an awesome Mom and have incredible patience. I think of you often…hang in there.
You are always in my prayers!
Honey, you guys are doing an amazing job. Don’t ever think you aren’t. You have been to countless appointments and therapists for a reason. Always trust your mommy gut. We know best and know what is up with our child. This surgery is going to help so much with his wanting to eat. I just know it.
Thinking of you! Hang in there sweetie. xoxo, Mary
Dear Lynn, Craig, and Aleck,
What strength and resilience you have shown. Our thoughts and prayers are with you.
Love and hugs,
Joanne
Ari still goes through long stretches where she doesn’t eat much at all. Even without all the bigger concerns you guys have with Aleck, I remember being just bereft some nights when she wouldn’t eat. So even though I know it’s part of a much bigger picture for you guys, hopefully you can take solace in the fact that it’s another lovely parental rite of passage. We’re thinking of you guys lots and sending good vibes.
You and Aleck are in my prayers. I will be thinking of all of you on Wednesday. Please keep us posted about your beautiful boy and the surgery.
Love,
Dawn
Oh geez! I’m so sorry you feel like you’re failing… You are doing the best you can. You are NOT a failure. If anything, you are AMAZING! You advocate for Aleck so well.
I was told to “stay calm” when Philip was in ISCU b/c he could “sense my stress” too, and I wanted to pull my hair out. It was ridiculously hard to just breathe normally much less stay calm. You have gone out of your way to make feeding time as calm and soothing as possible. But it is stressful! And you recognize it and give Aleck the best environment. You are a beautiful mom, and Aleck is so lucky to have you.
Lynnie,
I know I don’t comment often, but I do read your posts and when I saw the headline this time, I felt like I should say something. No one can imagine what you are going through with sweet, little Aleck – let alone doctors and health care professionals that don’t live with him 24 hours a day. You are so very smart to trust your instincts and I’m so proud that you have. Keep being the outstanding advocate for your son, and you are achieving MOUNTAINS more than most.
Motherhood, whether you have a healthy child or not, is certainly the most difficult job any of us will ever have. And if anyone were to look at what you do day in and day out, the last thing they could say is that you are failing. I know that doesn’t help when you think your child’s life is on the line, but he’s strong, you’re strong, and you have hundreds and thousands of people ready and willing to stand behind you guys and be strong with and for you.
An unwanted turn of events, I know, but hopefully this will help to turn things around for you guys and if not, I know that you will have the strength to recognize it, and do what you need to do to keep him as healthy as you can.
Sending love and hugs, and we’ll be thinking of you all on Wednesday.
The only thing harder than reading about Aleck’s challenging times is knowing that you are questioning yourself at all. Every time I read your updates I am reminded of exactly what degree of amazing mom-ness you give him. You give him the love and the fight that gets him through and he’ll do great. As if any if us would wait until *Wednesday* to put you in our thoughts and prayers 😉 Thinking of all of you & wishing him some amazing developments this week. Big hug- Lilly
You are his strongest advocate. It is not easy and weight gain/weight loss is very stressful. Sounds like you have done a good job making the home environment peaceful. Remember I work at Lurie and if there is anything I can do to help you let me know. There are child life specialists that can help you get acclimated to the hospital and plenty of support.
Lynn, be strong, stay strong Aleck needs you. You are doing a great job, and do not doubt yourself as a mother you are doing the best you can. Take deep breaths and smile. Aleck will surprise you one day he will start eating and you will start crying of joy! I have been praying for your little man, and have faith that he will be better soon.
Laura
Lynn–Thinking of you, Craig and Aleck and praying that this
latest surgery will help him take in the nutrition he needs.
Alice
Sense your stress??!! What kind of bullshit is that. Lynn, how can you list everything you’ve done for Aleck and then feel like you’re failing?? The strategies to help him have failed, not you! You’re not a failure —-you keep trying and trying….and trying! You’re amazing and one hell of a success as a mom.