Coburn Kids

Caden and I trekked up to Primary Children’s again today… and I can tell we have been going up there too much because the guy who hands out parking passes didn’t even ask me which building I was visiting today.  Just handed over the pass since it’s the same guy there every time.

Caden’s ENT is Dr. Park and after waiting for 1 1/2 hours we finally got in to see him.  He was surprised at the amount of paperwork that is there for our lil’ guy. But we were able to schedule Caden’s ear tube surgery on the same day of his palate prosthesis and will be coordinating with Dr. Yamshiro. That’s a great relief that we can combine those 2 surgeries since they are so minor.

He’ll have to see the ENT about once a year to check on his ear tubes, and about a month after the surgery they’ll want to do another hearing test. According to Dr. Park doing the hearing test directly after the ear tube surgery isn’t really reliable. Those surgeries, by the way, will take place Sept. 29th.

Also, the girls hearing results came back fine.  Great news!

Just as an update, Caden’s blood test results came back normal.  When I asked the nurse who reviewed them about his hemoglobin she thought we were looking for anemia… had to tell her it was the opposite actually.  His hemoglobin came back at 13.6, they said 13.5 is high so he’s just slightly over that mark. So nothing to worry about there.  It’s hard though to have your heart and mind be put through the wringer with these tests.  Wondering about the worst, but Caden just keeps on truckin’ on.

This week I have Gena and Adessa’s hearing tests on Thursday.  With the amount of ear infections they’ve had, and the fact that Gena has complained previously about thing sounding muffled I figured it was better safe then sorry.  Daniel also has early hearing loss so that’s a factor too. Then on Friday is Caden’s appointment with the ENT.  They sent over the referral but I’m not sure who exactly we’ll be seeing yet but that’s at 11 AM up at Primary Children’s.

In other news, Adessa has now been signed up for dance.  She has been begging to go to dance classes for at least a year now but I could never find one that would work with our schedule.  So now, starting on Sept. 4th she’ll go every Thurs. from 12-12:45 PM.  She’s super excited and we even got her new dance clothes and she’s just prancing around the house in them. I’ll have to get some pictures up of her in her dance clothes. The best part about the dance classes is that they are at our neighborhood community center as well. So very convenient.

Yesterday we went for Caden’s blood test, with the almost I’m-pretty-sure-he-has-an-iron-deficiency-because-of-all-the-signs mentality. He has spooned fingernails, he’s been very tired lately, he’s been irritable, he’s a preemie so it wouldn’t be all that surprising.  In addition, we haven’t been giving him his iron drops for months (he’s supposed to get them until 12-15 months old… bad mom I know) and he’s just on a regular formula now.  But noooooooo, Caden has to blindside me with his hemoglobin results.  He’s a 17.  I was pretty clueless to what a 17 meant too so I’ll explain.

Normal hemoglobin in a child 6 months old – 3 years old is 11-13 gm/dl.  Caden is a 17 gm/dl.  It’s extremely high. Way too high. Especially for a preemie who has had numerous surgeries. And just for my science lessons here, hemoglobin tests measure the amount of red blood cells in your bloodstream.  More of them means that your blood is thicker.  Thick blood = bad. Turns out my neglectful parenting could be a great thing!  That and the preemie clinic doctors were so sure of an iron deficiency too that they wanted me to increase his iron!

So today I am headed up to Primary Children’s (again) to get a full blood work up on Caden that involves filling 5 vials.  He won’t be happy. And because everyone has asked, no I’m not really sure what all this means. I’ve done some research and besides maybe some pulmonary hypertension nothing sounds like anything Caden has.  Not that pulmonary hypertension is something to be casual about because it’s very serious but literally… nothing else fits. So his test results will be interesting. I am right now leaning toward a possible fluke, where it just measured high for no reason.

Oh so much to tell. Today was Caden’s preemie clinic up at the Utah Dept. of Health by the U of U. I’ll go down the list of doctors and new findings for today:

Nurse – weight check 19.4 pounds and 28 1/2 inches long. 25% for weight and 70% for height adjusted age of 9 months

Pediatrician – Daniel and I noticed that Caden’s fingernails are concave, doctor worried about an iron deficiency (not surprising since he’s a preemie and has had 3 surgeries). So we have a blood test tomorrow at his pediatricians.

Audiologist – Caden completely failed his hearing test. They tested him with a machine to measure the vibration of the ear drum when hit with sounds waves, and it’s supposed to show some nice spikes. His was as flat as a pancake. He has fluid in his ears so we are going to start a round of antibiotics because he has a mild ear infection, we have an appointment on Aug. 29th with an ENT (ear, nose and throat doctor) up at Primary Children’s where we will make an appointment for surgery to get tubes put in his ears. After that we’ll head back for another hearing test though the audiologist is quite sure that he has some permanent hearing loss. We just hope it’s not on the scale of what the 1st test has shown otherwise we’ll all be needing to learn some sign language! It’s not as surprising to us that he may have some hearing loss actually, risk factors for hearing loss are preemies born under 1500 grams (Caden was 760), more then 5 days ventilation with pulmonary hypertension (Caden was on the vent for 3 months), cleft palate (check), Apgar scare of 0-4 at birth (Caden was a 1), Apgar score of 0-6 at 5 minutes after birth (Caden was a 5).  So there are a lot of risk factors for him.

Speech Pathologist – Gave us some great exercises to work with Caden on in terms of face and tongue movement. Also recommended we start seeing a Speech Pathologist weekly at the house so I have to follow up with Early Intervention to get those scheduled. Caden only tests at a 4-5 month old level in terms of speech, which would make sense if he’s not hearing conversation. Turns out, it’s a lot harder to tell if a baby is having hearing problems if they don’t speak (which could have been attributed anyway to his prematurity/cleft/or feeding issues anyway) and since Caden pays attention so well to faces and mouths he deceived us all! Look at that, only a year old and all ready outsmarting us.

Developmental Psychologist – Caden tests at an 8 month level in terms of gross motor skills. Behind but we knew that all ready. He’s slowly but surely coming along though.

Nutritionist – Very very pleased with Caden’s weight and progress here. She was blown away with his being a 27 weeker, his medical history and continued problems and the fact that he’s nicely plump and growing well. All of mommy and daddy’s diligence is paying off here.

Neurologist – We were supposed to see the neurologist but he left early so we will be seeing him in the next week or 2 for that appointment.

Just to give this visit some extra spice Caden decided for the first time in his life that 6:00 AM was a good time to wake up. His preemie clinic was at 8:30 AM and we didn’t get out of there until 12:30 PM. He was awake for 6 1/2 hours and WAS NOT happy about that. He hung in there though giving smiles to everyone.

So sometime in the next month we have Caden’s surgery for ear tubes, on Sept. 29th we have Caden’s surgery to get the palate prosthesis removed, and October 20th we have his surgery for the hard and soft palate closure. 3 surgeries in 3 months. Everyone say it with me… AWWwwwwww. After October, his surgery count will be up to 6. So he’s now our pin cushion and blow up doll.

My little baby is 1 year old! It’s so amazing for me to think of what was happening 1 year ago, in the hospital, my baby in the hospital… and now he’s a big 1 year old at 19 pounds and doing so well. For Caden’s birthday party we invited over family and he unfortunately didn’t make it to present time. He was too tired by 7pm!  He had his shots that day at the doctor so it wasn’t surprising. We made sure that he got his smash cake and had fun with that. He was just mesmerized by the feel and texture. You can see some pictures below:

 Gena and Adessa while we blow up balloons for Caden’s party

Caden having fun smashing his cake

Gena and Adessa blowing out Caden’s birthday candles (he was asleep by then)

 Adessa was very excited for her first day of preschool. She was anxiously awaiting all morning to go, a full 2 hours beforehand she was insistent on leaving. She had a “great day” as she put it when I picked her up from preschool. You can see pics of her leaving for her big first day here:

 Adessa getting ready to get in the car

 Adessa in the car ready to go to preschool

Sorry for no updates!  Not even on Caden’s birthday either, but I have pics to post I promise.

The last few days Daniel and I have been agonizing over Caden’s next surgery. It’s so hard to have to make these decisions as a parent, it’s basically a choose-your-kids-possible-future-complications, if you will, decision. Apparently, Utah repairs cleft palates differently then the rest of the nation, more in line with Europe actually. The typical repair timeline for a cleft lip and palate in Utah (and internationally) is:

2-3 months old – lip repair
9-12 months old – soft palate repair
4-5 years old – hard palate closure

The rest of the US follows this timeline:

2-3 months old – lip repair
9-18 months old – soft palate repair and hard palate closure

There are pros and cons with each method. The reasoning for doing an earlier closure is to protect speech and hopefully save yourself some speech impediments. The con with early closure is that it could restrict facial growth.  This is repairable though with surgery. The reasoning with later closure is to protect the facial symmetry but you risk the speech. Neither way is guaranteed, as even with the later closure you still might need to move the upper jaw forward at a later age regardless, about a 25% chance. It’s very controversial actually, deciding which order to close the hard palate in. Not even surgeons can agree on the best method and there is research for both sides for and against.

We met with Caden’s plastic surgeon today and we’ve decided to close Caden’s soft and hard palate together. His gumline just has notches rather then gaps, like you can see with other cleft kids, so we’ll wait until Caden is older to see what needs to happen there.  Depending on how his teeth come in could be a deciding factor and since we don’t even need to do a bone graft, Dr. Warnock uses a special protein which saves the child from having to have bone removed from somewhere else in the body, that surgery is a lot gentler and less painful as well.

So the date for Caden’s next surgery is October 20th. No time yet but it will be 2-3 hours long.  We’ll be admitted for 2 days and then he won’t be able to have anything chunky, with edges or probably even a bottle for 2 weeks afterwards. It’s either sippy cup or (since we get to cheat) his feeding tube.