Coburn Kids

Well, Caden turns 2 months old tomorrow.  He’s doing quite well, gaining a bit of weight each day. He was at 1860 grams so 4 lb. 1 oz. He’s really starting to fill out!  Big news is he’s stepped down  and is with all the feeders and growers in a new part of the NICU. He’s with 2 other babies as well so a 1:3 ratio.

Caden got his immunizations yesterday as well. He only cried for a little bit. I found it surprising that the nurses kept asking me if I wanted to leave while they gave them. With all the IV’s and other procedures we’ve seen done to him, as well as having 2 other children who all went through their own immunizations, I can’t figure out why they think it would bother me at this point!

I met with one of Caden’s Occupational Therapists (OT’s hereafter) and she let me know how they are introducing him to the bottle. They are using a syringe and putting a few drops of milk on a pacifier to just help him overcome his oral aversion. This can be a common thing for a preemie who was intubated for so long. They just don’t want anything in their mouths, understandably. He goes to town on his pacifier though, loves the thing. It’s a good tool to teach him how to breathe and suck at the same time. Hey, maybe one of my children will actually accept a pacifier!  Gena and Adessa would never take one, and it wasn’t for lack of trying on Gena with as much as she cried.

Other important notes about Caden’s personality. All of the nurses have commented that Caden “doesn’t get mad, he gets pissed.”  Their words, not mine. He is also determined and stubborn, if he doesn’t want to be on his left side he will fight and fight until you get him changed to his right side. His personality terrifies his Mommy, but is so excellent for a preemie who will be going through more surgeries and hospital stays!! Caden actually means “Fighter”, so it’s appropriate.

I just spoke with his nurse and she said he’s doing really well. He was awake and “wanted to play”, but has calmed down and is ready to sleep. A couple of big things have happened today. His flow was put down to 2 this afternoon and if he had a good day with no A&B’s he’d go down to one. So he’s had a great night and is down to 1 now on his flow. His O2 is at 30% and he’s eating faster, he’s getting 31ml in an hour every 3 hours. So he’s getting a 2 hour break between feedings. They have added a lipid/fat to his feeds to help him with his weight gain. He’s at 1820 grams which his nurse said he was 1826 last night so he had a little loss.

Caden continues to have some A&B’s so they have increased his flow back up to 4. He was a bit warm last night, around 100.1 degrees but his primary nurse, Jeannette, feels that this might be because he’s outgrowing his isolette. He weighed in at 1820 grams (4 lb.) and when they hit over 1800 they like to try to move them to an open crib. We are hoping that comes soon as then we can dress him! Call it a mommy thing but I can’t wait until we can buy him some little clothes, hats, and socks for him to wear.

This one is always fun, the total for Caden in the NICU for the month of August only (we haven’t received September’s bills yet):

Mine came to about $33k total. Not as much as I thought for 9 days in the hospital with an emergency c-section. They tell you to figure on a preemie staying in the hospital until their due date, which I think will happen, so another 5 weeks. Genevieve we were able to actually bring home about 5 weeks before her due date. Caden is going to have feeding issues and he still needs to get his A&B’s under control so I think end of October at least until he’ll be home with us. His original due date was October 28th, so maybe before Halloween. And yes, I fully and most insistently will be dressing him up in a costume. Even if we have to make the costume ourselves because I doubt we’ll find something small enough for him.

Caden’s oxygen flow has been turned down to 3 so good news. Feedings continue to go well and this little boy just loves lying on his tummy and swaddling. Concerning news is that Caden had 3 A&B’s last night, which isn’t so bad in itself, but on one of them his heart rate dipped down to just 30. An infant’s normal heart rate is about 120-150. So his nurse was going to be speaking to the NNP (Neonatal Nurse Practitioner) to see what tests they want to run there.

Genevieve’s first day of 1st grade went well. She made sure to tell me that if I forget to pack her lunch it’s “okay” because they have lunch in the cafeteria. She was particularly insistent on this point since they served Pizza yesterday. I had to explain that no, it costs money but I would be happy to pay for lunch one week when they have Pizza. She’s still very sad about leaving Kindergarten since she had a best friend and even a boyfriend there! Yes, I said it… a boyfriend. Apparently they held hands and that qualifies as boyfriend and girlfriend in Kindergarten. Terrifies her Daddy that it’s started all ready. But I know that she’ll make some new friends and will enjoy all the activities they do in 1st grade as well.

Caden’s doing well, his oxygen flow has been reduced from 5 to 4 and they are still suctioning a lot from him. He’s at 3 lb. 14 oz. right now and he’s been having a few apnea & bradycardia’s (hereafter referred to as A&B’s). This is expected, Gena went through the same thing. They grade them on a 0-4 scale.  0 being he recovers on his own. 1 being they have to give him a little shake to remember to breathe. 2 they have to remind him more “vigorously” to breathe. 3 they have to bag him and give him just a whiff of oxygen. 4 they have to bag him for a bit.

As promised, you can click on the thumbnails below to see the pictures of Daddy holding Caden, the gifts our primary made for him and the quilt they made drapped over his isolette.

Geneveive officially starts 1st grade tomorrow with Ms. Jensen as her new teacher. She is very nervous because it’s like the entire ‘first day of school’ experience all over! I say this with a bit of excitement as well because this time, I’ll actually be here for it. So Mommy is particularly happy as well. We’ll let you all know how that goes.

All right, Caden is 1780 grams right now (3 lb. 15 oz.) and 16 1/2 inches long. He finally came off his oscillator Saturday at noon and is on a high-flow nasal canula. He’s doing wonderful with that. It irritates his nose a bit but his oxygen is holding and though he’s having some decelerations in his heart rate he’s tolerating it well.

Other big news is that mommy and daddy finally got to both hold him! The little guy looooves to be held and loves to be swaddled. He’s awake a bit more now and we’ve even heard his hoarse little cry. Because the tube was down his throat for so long it will take a while until we hear his real cry.

We also received the most wonderful presents today. During church we were asked to come into the primary and the children and teacher presented us with Get Well Soon cards, bibs they colored themselves and a blanket. We brought the blanket up to the NICU tonight and took pictures. Those will come in a bit. So a very good weekend!

Let’s start off with Adessa since we had her appointment first today. The little doll was so good and adorable the entire morning. She has this way of charming herself into anyone’s heart. We went in for her Pediatric Cardiologist appointment and they started off by taking her weight, height, blood pressure and did a short EKG. That’s her at the left looking like an “octupus” as she put it. The EKG was normal and then Dr. Everritt came in to listen with her stethescope. She was taking a very long time, having Adessa sit up, lay down, hold her head up, put her head down. Daniel and I have come to find out that whenever a doctor takes a long time to do something… it means they have found something and it’s not because they are just being thorough.

Turns out that yes, she does have an innocent murmur along with something more atypical on the other side. Now I’m just quoting the doctor here and can’t really clarify that statement. They have scheduled an Echo for October 5th but the doctor stated it could be another hole or a defective valve. This, of course, breaks Daniel’s and I heart (no that wasn’t intended as a pun) but no matter the case she doesn’t act like someone with a heart deffect (letheragy, failure to thrive, etc.) so we are hoping it’s just minor. The doctor didn’t state anything about restricting her activity so at the beginning of October we’ll find out more.

Second we have Genevieve. I went in for the meeting about her grade promotion with the school’s LEA representative (I have no idea what this is), her Kindergarten teacher, the Special Ed teacher (no idea why there either) and the school’s guidance counselor. Genevieve’s teacher and guidance counselor both stated that though they’ve had multiple parents want their child assessed, they have never recommended a grade promotion until Genevieve. I say this with a bit of pride but also embarassement. I mean, I should be proud of Gena and her strengths and that’s it, but it’s hard not to worry how this comes off to other people. Genevieve’s teacher told us that yesterday when they had their “6th grade buddies” come in Genevieve picked up a chapter book and the 6th grade girl couldn’t read it so Gena started reading to her. I wanted to sink into the floor as I told the teacher “I hope Gena was nice about it.” But she assured me that she indeed was very polite and they had a good time together. She thought it was just adorable.

So the paperwork has to be approved by the district and they are strongly encouraging us to apply for the advanced ALPS program this next school year as they don’t believe 1st grade will challenge Genevieve. Gena is in the top 1% for her age group and they believe this will continue into 1st grade. They did a behavorial and social assessment as well and stated that Gena was above her peers socially.  Which we’ve noticed by her tendency to mother them and try to direct their play. They commented on her frustrations about being interrupted or told to let other children answer the questions, her emotional response and intensity (very common for gifted children they said) and her ability to leap-frog in subjects. Genevieve has a natural ability to learn and doesn’t need much of a foundation or introduction to topics but can dive right in with math, reading, science, etc. 

So Gena is excited but nervous to start 1st grade as she all ready has a best friend in Kindergarten. This just brings a tear to my eye as a mom to think she has established such a friendship but I know that she’ll do well and make new friends in first grade. So a big “yeah!” for Genevieve.

Next up, we have Caden. I just got a call from the NNP and he stated that they are going to give Caden a shot of dexamethasone (steriod) to jump his lung development and that they will try to extubate him in the next day or two. He’ll move to a high-flow nasal canula and we’ll cross our fingers! It’s not uncommon for them to take a step backward when this happens but we’ll hope for the best. His heart rate dropped into the low 80’s again today for about 30 seconds and it’s something they are watching. So they’ll order another x-ray and blood gas tomorrow and then we’ll just see how Caden tolerates coming off the oscillator. 

Caden is now 7 weeks old, yeah! First off, he passed his ROP tests again. We are very surprised, with the amount of oxygen and his length of time on the ventilator we expected some degree of ROP but to see that he has nothing yet… well his eyes are clearly better then his mommy’s and daddy’s.

Next up, I won’t go on about his nurses the other night again but we noticed his heartrate low the other night (which they didn’t report) and yesterday morning he dropped down into the 80’s and 90’s. What is puzzling is that his oxygen levels have been excellent. He was down to 24% oxygen and holding very nicely when it happened so they ordered some bloodwork and x-rays.  All of which came up normal. He’s been good on his heartrate ever since so that was just a minor incident.

Feedings are continuing to go well, he gained 10 grams last night so 1730. He’s giving a bit back on residuals but nothing too concerning.

Adessa has her appointment with the pediatric cardiologist up at Primary Children’s tomorrow. We’ll be sure to update you all on how that goes.

Caden weighed 1720 grams last night (3 lb. 13 oz.), we believe his weight previously putting him over 4 lb.’s was really off. We actually weren’t really happy with the nurses watching him last night.  It’s a hard thing to say really… the nurses (a mentor and then someone almost ready to be a NICU nurse) were very nice and talkative. But you can tell inexperience and while I don’t claim to be any expert both Daniel and I did not feel comfortable with them watching our little boy.

First off, Caden’s oxygen saturations were in the 100’s for over 40 minutes. This is not a good thing for his eyes, being kept at this level damages the blood vessels in the eyes. She was way too timid at lowering his oxygen that was at 38% when we came in. After many “suggestions and observations” from Daniel and I they finally got him lowered to 28% where his oxygen sat’s were much more normal in the low & mid 90’s.

Next, the trainee NICU nurse was not very comfortable or confident changing his bedding and at one point she disconnected his breathing tube and didn’t seem to know how to reset the machine. The other nurse had an edge of panic in her voice while coming over and telling her to hold the button down to restart it. Caden is having a lot of secretions right now and the oscillator machine keeps his lungs constantly inflated so that they never fully deflate.  Even deflating for a few seconds, as Caden’s did, can cause his lungs to collapse.  Caden must have that constant pressure to keep his lungs inflated. I know that mistakes can happen, but to see it happen on your own child who is so fragile is disturbing to say the least.

Another aspect I didn’t like was how loud these 2 women were. In an isolette the noise is actually amplified and to constantly hear that must have been deafening for him. I know that every nurse must have a “trial by fire” at some point but Daniel and I just did not feel comfortable knowing that an “almost NICU nurse” was taking care of 2 very sick preemies, Caden and Baby High.  I know she had her mentor there but it didn’t provide confidence.

As I said, the nurses were very nice but a parent really needs to feel confident in the nurses taking care of their little fragile baby. This is only the 2nd time in Caden’s hospital stay that we did not feel that confidence with a nurse.

Besides that, Caden’s feedings are going well. He’s on 31 cc’s every 90 minutes now. He’s been weaned from his morphine completely and is only getting hydrocortisone once a day now. He’s still getting his ativan (sedative) and last night was really upset before he got his dosage. Mommy had to calm him down and hold his little arms and legs. He’s having good diapers and his nitric has all ready been lowered to about 2.3 and he’s tolerating that excellent. His heart rate has been low as well, down in the low 100’s so that was something we hadn’t seen before and we’ll ask about that today.

Today Caden broke 4 lbs. He’s 1890 grams or 4lb 2oz. His Oxygen is around 40, but that could be because they took his Nitric down to 4ppm and they’ll try to reduce it by 1 every twelve hours. This also means his echo came back good on his heart. He did have some issues with his feedings tonight though. He gave the nurse back 12 ml, when he’s getting only 10 per hour. The nurse said they took a few ml’s off his feeding to deal with it and gave him it back. If he has more residuals next time they check they’ll try to put him on his stomach to see if that helps. Overall he’s doing pretty well and we are waiting for them to decide when to do his bone test and next ROP test.