Coburn Kids

After officially 120 days in the NICU Caden is home! Genevieve and Adessa are absolutely IN LOVE with their baby brother. They don’t want to leave him and all they want to do is hold him the entire day. They love to give him hugs and kisses.

We have his first doctor appointment today as well as Home Health coming out to give us supplies for his NG tube. We have to make an appointment with Dr. Y (can’t spell his last name) sometime next week to get Caden’s palate prosthesis done.  He’ll wear this until he’s about 3-4 years old and they can do the bone graft and hard palate repair. Next Thursday he’s also scheduled for another ROP test up at Primary Children’s Hospital. 

Caden finally has a surgery date for his lip, and what a mess that was. Between a 1/2 dozen phone calls we finally got it settled and it will be January 14th. They had set a date for Dec. 5th but there just wasn’t enough time to get that ready and Caden’s eyes still have ROP so we don’t want to risk him on oxygen just yet.

I also get to be sneaky and can “claim” Caden sleeps through the night. The nurses told us that unless he’s fully awake and eager we can use the NG tube until Caden gets a bit bigger and won’t tire himself out so much bottle feeding.  So I just pop on his feeding syringe at midnight, 3am and 6am and he doesn’t have to wake up at all.  We are going to try to increase his feedings more during the day and start tapering off the ones at night to also help with this.  Caden  still only takes about 30-40 ml’s out of 70 ml’s right now. 

•  Caden getting ready for his overnight stay w/ mommy and daddy
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• Caden’s primary nurse Jeanette
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• Caden getting ready to come home
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• Caden in his carseat
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• Genevieve holding Caden
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• Adessa holding Caden
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• Adessa, Caden and Daddy
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So everything is starting to get ready!  Caden got his synagis shot yesterday for RSV, he’ll get his 4 month immunizations on Monday.  Tuesday he has his car seat test and then Wednesday he can come home!  They’ve decided to wait to do his hernia surgery until he gets his lip surgery.  Dr. Bloom, the neonatologist, says he’ll check on Monday again with both surgical teams to make sure that’s okay. This is better for Caden as he’ll only have to be put under general anesthesia once and the pain medication they’ll give him for his lip would be stronger then what they give him for his hernia so he’ll be more comfortable.

I placed my first NG tube though yesterday. It’s definitely a 2 person job.  It’s easier then I thought but you have to hold him down pretty good to keep it from pulling out and to get it taped in place. He won’t have to come home on oxygen thankfully.

When he comes home he’ll have officially been in the NICU for 119 days and will be 3 days away from 4 months old. He looks huge to me. He’s about 8lb. and 19″ long now.  All those darling newborn and preemie outfits.  *sigh* I can’t wait to dress him up though.  A Mommy thing, I know.

All right, sorry it’s been a while since we’ve updated this but we’ve all been sick. I have some very good news though, Caden could be home as early as next week!  Caden’s craniofacial/plastic surgeon Dr. Warnock came up on Monday to see him and everything looks good.  He was very pleased that his gumline is nearly intact, only indents versus any real spaces. The middle of his lip also doesn’t extend out so far so in his opinion, pretty good looking for the cleft. (We think so too )

Caden is a hefty 7lb. 14oz. now.  He’s just about 19″ long and is growing more each day. I haven’t been up to see him now for 4 days and it’s killing me but I will NOT get him sick just before he can come home! He still has his car seat test, an overnight we have to do with him at the hospital and we have to learn how to place his NG feeding tube, maybe some oxygen.  So there are a couple steps left in the process, not to mention that it’s a holiday weekend.

He takes just a little over 2 oz.’s now at every feeding.  He’s still at about 1 oz. every other feeding by bottle. This will improve when he gets his hernia surgery done which they’ve decided to wait until he gets his lip surgery done as well. This way he’ll only have to go under general anesthesia once. I can’t tell you how excited I will be to hold him and cuddle him whenever I want! He has such great awake periods where he’s quiet, looking around and just wants to play.  He loves tummy time up at the hospital as well.

Caden’s eyes continue to regress and he just loves being held. He doesn’t like to be swaddled as much anymore, he’s always fighting to get those arms of his out of the blanket. He just wants to look and see the world and we are just having a mad dash to get everything ready for his homecoming.

All of Caden’s test results came back negative.  No infection, nothing viral, everything is great. We don’t have a reason for what happened but Suzanne stated she thought it could have been either an aspiration or some blockage from mucus maybe. She really believes it was the bagging that brought him back, that cleared up his airway. She was so sweet, she couldn’t stop thinking about us the other night after she went home. The scary thing about all this is that if it had happened at home she felt it would have been just a SIDS case. There would have been no warning, he didn’t cry or grunt or make a sound when it happened.  You could have been in the same room and not have known something was going on. If it was the bagging that brought him back then again, I couldn’t blow hard enough to have done anything with CPR. It will be written as an ALTE (apparent life-threatening event) and we’ll have to hope that it doesn’t happen again.

Caden is up to 7lb. 4oz. now! He’s just under 19 inches long so he’s getting big. He has a mobile over his open crib now and a travel swing he loves to sit in.  He’s still perfectly bald and I love that. He’s taking between 25-35 ml’s every other feeding by bottle.  So still about half. Suzanne gave me a crash course in how to place his NG tube the other day.  Really doesn’t seem hard, it’s just managing to hold down the baby, get it placed, then taping it to his face.  I imagine after a couple of times I’ll be a pro at it.  Other good news is that Caden hasn’t needed his oxygen when doing his bottle feeds lately.

We are anxiously awaiting Wednesday to see his ROP test results again. We’ll see if there’s any change or if we’ll be going on our 4th week with no changes. We’re waiting for either his eyes to hit Zone 3 vascularization or for his ROP to get better. Besides that he continues to grow and get bigger every day.

Today was one of those days, when you wake up and everything is great. We brought the girls to see The Bee Movie, and they loved it. They were excellent with their popcorn and drink. Daniel and I had a good time and we come home and there’s a message from the University of Utah hospital. I’m thinking it’s just the Occupational Therapist wondering when we are coming in today for his feedings. But it’s the NNP saying she wanted to discuss some things with us about Caden. We think nothing of it.  Daniel calls back and then it turned into a horrible day.

Caden had a grade 4 A&B today that went to a Code Blue. He would not respond to stimulation and they had to begin CPR by putting an oxygen bag on him and begin chest compressions. They went through several rounds until they could start to register his heart beat at around 60 (120-170 is normal). They ran all his blood work today and it came back normal. We are still waiting on a viral screen and depending on how he acts over the next 24-48 hours they may also do a chest x-ray.

It has surprised everyone. Caden has not had an A&B for over 2 weeks now. The rule of thumb is that if they go a week without one they are usually home free. He’s never had anything higher then a Grade 2 before and even then they were few and far between. They can’t place their finger on what happened, it wasn’t after a feeding when you normally expect some reflux and possible desats.  In fact it was a 1/2 hour before his feeding so his tummy was empty.

I spoke with his nurse Suzanne and I could tell it really freaked her out. She was over at his crib starting his cares when he arched his back and clamped his mouth down then turned purple. She thought he was just trying to have a bowel movement as he’s been a bit constipated lately. But he didn’t stop. Before the monitors even registered what was happening (they have a 20 second delay) she knew something was wrong. He then went limp and a code blue was called. She told me directly that she worried what would have happened if she hadn’t been there at his bedside at the moment it began. That if they would have waited for the monitors to alarm it could have been too late.

They were seconds away from intubating him again when he recovered. He’s very wiped out and tired. Everyone stopped by his crib to see how he was doing.  The OT, the social worker, other nurses, the NNP’s. I’m glad that he was in good hands when it happened. I’m not sure how much of a setback this is at the moment for him. We’ll know more in the next few days.

That’s right, our little man is now 100 days old. Whoa. Deep breathes. So we made him a little sign, brought him up an outfit.  Daniel’s mom even brought cookies for all the nurses! They loved them. Quite an occassion to spend 100 days in the NICU.

So, on to some quick updates. Caden is 6lb. 15oz. now, almost 7 lb.’s! He’s taking about 58 cc’s of formula. He’s still doing about 1/2 his feedings, every other feeding by bottle. Daniel even got him to take his full bottle last week. Caden’s ROP tests continue to come back as unchanged. Stage 3 ROP in both eyes with Zone 2 vascularization. This could go on for weeks. *sigh* We have to wait for his eyes to vascularize more before he can have surgery.

He wakes up a lot now. He has great awake and alert periods. He can be a complainer but he’s not really a crier. (Big hurray!) And that neck control of his is outstanding. He lifts his head up from your chest, looks around, can turn his head while on his stomach. It does not fit an adjusted age of a 1 1/2 week old baby. They even put a mobile over his crib to give him more to look at.

Daniel and I believe our hope at having him home before Thanksgiving may be out the window now.  So before Christmas it is! 

So Daniel and I need to come up with an idea for Caden’s 100th day in the NICU.  He’ll be a centenarian this Friday (yes I know that’s  years but we are bending the rules here!) We are thinking a sign of some sort.  Give us an idea!  Truely, something to do for Caden or his nurses for his big 1-0-0 Day!

On to the update, Caden is taking a solid 1/2 of his feedings now, up near 25 cc’s each time. He weighs a hefty 6lb. 7oz.’s. He still needs oxygen for his feedings but has had no A & B’s in about 2 weeks. His last ROP result came back with nothing changed so it’s all a waiting game now. He’ll have his next test on Wed. or Thurs.

Last night was nice as we had my Uncle Kent and his daughter Emily up there. We chatted and stayed there for almost 2 hours. Emily got to hold Caden as well.

I rescheduled Caden’s plastic surgeon consult to Nov. 27th.  So cross your fingers he’ll be home in time for that!

All right, so Caden’s due date has come and gone. He’s 3 months old today, a whole 6 lb.’s and growing big. And…. drum roll, we have no idea when he’ll be home. Seriously, I could have sworn last week that we were so close to his homecoming (I should know better as the day I delivered I thought I was about to be discharged). They want his hernia surgery done before he leaves, that will take place at Primary Children’s. He still hasn’t had his ROP exam but we are assured that will be done before Friday. If it has progressed then they’ll do the ROP surgery that day in the unit. I found that strange but hey, I’m not a doctor. I imagine it’s like a LASIK surgery and not too traumatic. Daniel mentioned a homecoming of Thanksgiving to the nurse and NNP and the response of “we hope so” doesn’t exactly proclaim assurance.

I have to call his Plastic Surgeon, Dr. Warnock, and reschedule our consult with him for Caden’s cleft. I’m also trying to find a great pediatrician for him and the girls as well. I love our current one but she’s had to cut back her hours and is a 1/2 hour drive away. I’d like to try to find one that has experience with Clefts as well but I’m not sure how to go about that. So we continue to move along, slowly and always waiting.

In other news, the girls LOVED Halloween last night. I was surprised at how long Adessa wanted to go for. So they brought in a candy haul, I’ll have to post pictures. They went with their little cousin Ethan who was adorable! He wouldn’t wear his cookie monster costume but after the first house was very excited to be getting candy and the way he said “Trick or Treat” was adorable. They loved it.