Dreams

Lately I’ve been having the same dream almost every night….different situations, but always a common theme. They always feature a Dream-Noah that can walk and crawl.

And it always ends the same. I open my eyes and my heart hurts.

During the day, I see pictures and videos of the babies in Noah’s birth club. They are all crawling and some of them are even taking their first steps. Even something as simple as seeing a picture of a baby in a Bumbo, Jolly Jumper, or swing at the park makes me feel a little twinge of jealousy that I wish wasn’t there.

That’s the sad part. I love all of their babies as if they are my own. I am happy for them when they do awesome things like walking or saying “mama” for the first time, etc. But at the same time, I feel a sense of loss and jealousy. And then I feel guilty. I shouldn’t feel that way.

But yet I do. It constantly weighs on me to see everyone else’s babies doing awesome and mine stuck in a rut of development somewhere around the 2 – 4 month mark. Hell, even seeing pictures of my friend’s one month old om-nomming her teddy bear made me sad, because Noah doesn’t do that. He doesn’t reach out and grab things. He barely opens his mouth for his spoonful of solids, let alone a random object.

I hate it when I feel sorry for myself and Noah, but I hate it even more because it’s happening more often the older he gets. Even thinking about his birthday makes me incredibly sad because I decided that we would do cake smash photos before he was even born and I already know that he likely won’t be able to sit on the ground and smash a cupcake. The most we’ll be able to do is put him in his high chair with his special 5-point harness and put a cupcake next to him and take pictures.

Everything I want to do with him, I constantly have to adapt. If I want him in the kitchen, I put him in the computer chair with a pillow on either side of him, and even then he usually slides down and I have to keep propping him up. We still have him in the baby tub on the table, and I’m not even sure yet what I’m going to do once we have to put him in the big tub (which is very soon). We had to borrow a wheelchair harness from PT so that he could sit in his high chair. His monthly pictures have to be done in the corner of the couch. I figured out the best way to prop him up on the couch so I can clean up, make him a bottle, etc. The Jumperoo is essentially an exersaucer because he doesn’t jump in it, and I have to prop his little pillows around him so his head doesn’t go crazy. He has to be propped up against the couch in order to sit in the Bumbo or his head falls back. I bought a pumpkin to put him in to take pictures, and I already know that it’s too short so I’m going to have to figure something out to support his head.

The list goes on and on and on….and it sucks.

I wish that I could just spend my days with my boy playing with toys and crawling (or even rolling or walking) around. I wish that we could do BLW instead of purees. I wish he could hold his own spoon and even try to bring it to his mouth, even if it doesn’t have any food on it. I also wish that I could have normal playdates. I always feel like I take up extra room that should go to someone with a normal child, because Noah doesn’t play and therefore doesn’t add anything to the playdate. Even at Early Intervention play group we’re one of the few immobile ones…then again, they are mostly all at least 3 months older than Noah, some at least a year older.

Most of all, I wish we were normal. Completely unremarkable. That we didn’t have to spend a bunch of money every 3 months for his pediatrician visit in Edmonton. That we didn’t have therapists and specialists and whoever else coming to the house. I wish that I didn’t know what a NICU is like, and that we didn’t have to go to places like Glenrose and have reports sent to us laying out exactly what it wrong/slow/not-normal about our son. I wish I didn’t have a “story”, or that people wouldn’t stare at Noah when we’re at the store, etc, once they ask how old he is and they realize that he doesn’t act like a normal 9 month old.

I stay home because it’s so much work to take him anywhere, even the store. He doesn’t sit in the cart, and he’s getting to be almost too big for his Snugli and bucket seat. I honestly don’t know what I am going to do when we’re in Edmonton, just me and Noah.

Most days I wish that I could never wake up. In my dreams I get to see the developmentally normal Dream-Noah, and it makes me happy. As soon as I wake up, that dream, both literally and figuratively, is gone. It breaks my heart every single day.

I constantly wonder if there was something that I could have done differently, to change something and change our outcome to one where we would have never even known what the NICU was. And then I’m annoyed with myself because I know that I shouldn’t dwell on that. None of the hoping and wishing in the world will cure my little boy of his birth trauma.

I think it’s one of those things that I will never completely “get over” but I will eventually come to peace with. I didn’t sign up for this to get a “Special Needs Parent” badge; but I suppose none of us do. SOMEONE had to be the 1 in 3000, and for some reason that had to be us.

Report from Glenrose Rehabilitation Hospital

Today I received the report from Noah’s first appointment at the Neonatal & Infant Follow-up Clinic at the Glenrose Rehabilitation Hospital in Edmonton. He was there on September 12th for a 3 hour appointment, and this is what they say:

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HISTORY:

Noah was born at term, birth weight 3920 grams. There was meconium at the time of delivery, Apgars were 2 and 7 with a cord PH of 6.9. He initially recovered, but began to have seizures on the second day of life and was transferred to the University Hospital [Stollery Children’s Hospital, which is connected to the University Hospital]. He had a very large cephalohematoma, and hence the head circumference measure on admission was 40 cm; this does not accurately reflect the true head circumference. Noah had severe hypoxic-ischemic encephalopathy, and on day 6 was extubated to comfort care. He was discharged home, and has been making nice progress. He is followed by Dr. Faltaous in Grande Prairie and every 3 months in Edmonton by Dr. McGonigle. An MRI that was done at 2 months of age showed cystic encephalomalacia with subdural collection also likely secondary to the encephalomalacia. He is due to see Dr. Lewis in November, and his parents report that his eyes “wobble”, although he does follow and track and recognize his parents visually. Of note, Noah’s father has very limited vision in his left eye, which is reportedly due to a developmental anomaly of the eye. He also wears glasses for shortsightedness. [For the record, I wear glasses for shortsightedness, he wears glasses for farsightedness].

Noah’s parents did take him for a course of intensive physiotherapy [ABM] (which is not covered by Alberta Health Care) and told us that this made quite a difference to the hypertonia of his upper limbs. They are also considering hyperbaric oxygen therapy which is now available in Edmonton. Noah also receives Home Care physiotherapy, occupational therapy, speech-language pathology and nursing in Grande Prairie. He has no difficulties feeding orally.

ASSESSMENT

Nursing/Pediatrics: Head circumference 44 cm (24th%ile). The fontanel is almost closed. General examination is unremarkable, testes are descended. He had some patches of red dry skin, and he had a diaper rash. Dr. McGonigle had prescribed cream for a Candida rash earlier today. Noah has markedly low tone in the trunk, and a marked head lag. He has no head control. The tone in his limbs is variable. He has dystonic movements of his upper limbs and head and neck, and as his head turns from side-to-side he spontaneously goes into an ATNR posture. The Moro reflex is also present but not brisk. Hips are stable. Intermittently there is loose fisting. He also has horizontal nystagmus, and an alternating esotropia. I could not see the fundi, although red reflexes were present.

Audiology: The assessment took place in a sound treated room and was completed by a registered audiologist. Visual reinforcement audiometry was utilized with insert earphones with good reliability and elicited responses consistent with essentially normal hearing bilaterally with responses between 15 and 20 dB for 500, 1000, and 4000 Hz bilaterally. A speech recognition threshold was obtained at 15 dB HL in both ears using insert earphones. Tympanometry indicated normal middle ear pressure and compliance bilaterally. Ipsilateral acoustic relex testing could not be completed. Otoacoustic emission (OAE) measurements were performed utilizing distortion product stimuli. OAEs were present bilaterally. Noah’s OAE responses are consistant with probable normal cochlear function bilaterally. Noah’s hearing will be reviewed in conjunction with his next visit to the Neonatal & Infant Follow-up Clinic due to his diagnosis of HIE III.

Dietary:

Weight = 8.33 kg (29th%tile, z-score -0.54)

Length = 70.8 cm (35th%ile, z-score -0.38)

Weight/length = 35th%ile, z-score -0.39

Head circ = 44 cm (24th%ile, z-score -0.72)

Measurements were plotted on the new WHO growth chart. Noah looks well nourished and plots appropriately for his weight-for-length ratio. His weight-for-length ratio is a little low indicating he is lean. All other measurements appear appropriate for age and development.

Physical Therapy: Noah was assessed by PT using clinical observations. His parents report that he is followed by PT and OT in Grande Prairie every two weeks. He has also had one week of intensive therapy using the Anat Baniel Method. His parents note improvements in his skills following this. In terms of equipment, Noah is reported to have a Tumbleform floor sitter and a reclinable high chair for use at home.

During the visit today, Noah presents as a very sweet little baby who shared some smiles during the visit. He has a nice calm disposition and tolerates handling well. Noah is noted to be quite a floppy baby with significant underlying hypotonia and fluctuating increased muscle tone in his extremities. Ranges of motion in both arms and legs are within normal. Noah shows limited awareness of his environment and visual tracking/focusing was found to be inconsistent.

In terms of his skills, Noah shows spontaneous anti-gravity movements in all four limbs when in supine (back). His movements varied between being slow and writhing (choreoathetoid) to quick and jerky followed by a slow release (spasms). His parents report he has not had any seizures since around the time of his birth. When toys are held up for Noah, he is not able to reach or bat at them purposefully. Noah does make attempts to bring his hands to his mouth and gets occasional success with this. At times he over-shoots and gets his hand to his cheek or his forearm near his mouth. His parents also report that he has rolled between his back and tummy at home but is not able to do either consistently. When placed on his tummy today, Noah showed good head elevation to 90 degrees. He is able to turn his head freely between left and right while propping on his forearms. He does fatigue easily and will lower his head for a rest. Active neck extension is observed as he raises his head back up. Noah was noted to tolerate roughly 4 minutes on his tummy while intermittently looking up. Skills in prone are a strength for Noah and parents attribute this to the intensive Anat Baniel therapy.

In supported sitting, Noah shows fluctuating head control. He requires support at his upper torso to stay upright and tends to adopt a rounded posture, rocking back onto his sacrum. A GRIP seat was trialed today with him to encourage more upright supported sitting. Noah tolerated it well. His parents would like to assess his positioning in his high chair at home before deciding on if the GRIP seat is necessary. Measurements were taken in case. A size small Rifton blue wave bath seat was also trialed. Noah tolerated and fit this well also. He does have a commercial bath tub at home but is reporting to be outgrowing this. His dad occasionally sits with him in the tub as an alternative. Noah’s family will discuss the equipment with their therapists and contact us if they are interested in either piece.

Lastly, Noah was held up to stand today. He was able to take his full weight through his legs but was not able to hold his head up consistently while standing. His parents report that he is using a jumper at home. This is not recommended since Noah does not have the adequate head control to support this. [For the record, I’m pretty sure they misunderstood what we said. He has a Jumperoo. We place pillows around it so he’s not banging his head around and he’s not even really jumping. For all intents and purposes it’s basically an Exersaucer. I’d understand if it was a Jolly Jumper, but no, it’s a Jumperoo.] He can be held up to stand or be placed on the floor or in a supported seat instead.

Overall, Noah’s gross motor functioning is significantly delayed for his age of 8 months 23 days. He is well supported in the community by PT, OT, and SLP.

Social Work: Noah is an 8 month old boy, who had a severe brain injury around the time of birth. Despite this he is following his own developmental pathway. He is a very happy child and has very nice interactions with his parents. His parents are realistic with respect to the expectations, and are committed to finding the best treatment and best outcome for him.

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That was essentially the full report. I like it because it is a very comprehensive list of updates for how Noah is doing, although to be honest I don’t like it simply because it is very hard to read all the things wrong with him, right there in black and white. In any case it’s a good thing to have for our records, and I definitely thought it was interesting and informative.

 

“Treatments For Noah” – Charity Fundraiser

There have been big things going on around here and I am very pleased to share with you some very big news.

Two of my aunts have generously decided to send us a $5000 cheque to cover the costs of getting Noah 40 hours (2 months) worth of Hyperbaric Oxygen Therapy (HBOT). So Noah and I are moving to Edmonton temporarily for the two months that we need to be there for the HBOT.

Nicole McCoy and Kerith Boyles, two close friends of mine, decided to start a fundraising campaign to help us with the costs of the treatments (we were also wanting to pursue more ABM while we are there) as well as living costs, etc.

They have decided to have a charity auction, where all of the proceeds will come to us. The date and duration is TBA but if you are interested in finding out more information or participating, please visit the fundraiser Facebook page or blog.

We currently have 16 sponsors, but we are looking for more! If you have something you would like to donate to the auction (a product or service), please email us at: tfn_fundraiser@live.ca . We keep an updated list of sponsors here.

A PayPal account has been set up as well, where you can give a monetary donation (we’re still working out a few kinks, so that is also TBA).

Please “like” and share our Facebook page, and it doesn’t matter where you live because many of our auction items are available to be shipped across North America. 🙂