Coburn Kids

On Saturday we were able to get together with family and celebrate Gena’s 6th birthday. We all met at ChuckECheese (Gena’s choice) and had pizza (so called), and played games. The girls and their cousin Ethan had a blast. Gena was joined by her Uncle Jason, Aunt Angie, Grandpa and Grandma W, her Great Aunt Carol Ann and her cousin Ethan. The place was a Zoo with all the little “animals” running around.

Caden’s a big boy, he hit 6lbs last night. But he’s dropping off on his feedings. He was up to 25 – 29ml per bottle, but now he’s down in the teens (except when I fed him this weekend when he got 25ml). His feedings are up to 50ml, so he’s once again below 1/2 and he’s only being fed 2-3 times daily by the bottle. On Wed or Thursday he’s getting his next ROP test, and mommy and I are anxiously awaiting the outcome. We are definitely nervous about him needing surgery, and all of the other things that will come along with it including being back on a respirator etc.

On a side note, Caden is officially the 2nd oldest baby in the NICU at 13 weeks old. And good news his Girlfriend’s #1.

Caden’s ROP test results came back and his eyes are now at a Stage 3. They are getting progressively worse so this means another week in the hospital with a follow-up test on Wednesday.  The good news is that they don’t think it’s serious enough for surgery yet or that they are deteriorating so quickly that he would need a test sooner. There is a great interactive flash that details out what exactly ROP is and how it progresses if you’d like to see it here: Retinopathy of Prematurity. He’s been very tired the last 2 days so his feedings haven’t gone as well as previously. He’s growing big though, is very alert and has great neck control… kind of freaky actually.  You go by an adjusted age for preemies with their development and he’s technically still 0/newborn but his neck control is fantastic.  He raises his head when he’s lying on you to look around and can turn his head while he’s on his stomach.

Adessa had her preschool’s Halloween party yesterday at school.  You can see her in her costume there and she had a blast. Today we have Genevieve’s Parent/Teacher conference at school and I must confess it’s a bit nerve wracking.  You think your child is doing good but you just never know!

Caden had his first bath yesterday!  He didn’t even cry but did pee and poop twice during the 5 minute bath.  Daniel had to take and sanitize the tub twice.   We gave him a swaddle bath, which is a great way to make sure the baby doesn’t lose their temparture and keeps them very calm and quiet. You place them swaddled in the tub wrapped in a blanket and then just take out one arm or leg at a time then wash it and cover it back up. He was adorable looking up at me during it, it was quite the new experience for him. You can see 2 pictures of it to the left.

Caden continues to do better on his feedings. He took 14 ml’s, 16 ml’s, and 21 ml’s yesterday. We are going for every other feeding right now and he is up to 44 ml’s a feeding.  We just heard from his OT Vicky today that he took 26 ml’s so he’s doing about 1/2 his feeding by bottle.

Depending on his head ultrasound on Thursday, and his ROP test on Wed/Thurs. will tell us if they’ll let him go home!  It could seriously be just another week away until we can finally bring him home. Very surreal and exciting at the same time. It’s a lot different then Genevieve who was only in the hospital for 3 weeks and Adessa whom we brought home with us. I was still getting over the whole labor & delivery, I remembered what they felt like kicking around in there.  But this has been 3 months! I’m more then fully recovered and feel normal. Then suddenly I’m bringing home this little baby. Considering how much time and care he’ll need though, it’s a blessing in disguise that I can feel healthy and normal without having to worry about recovery or pain.  I’ve had a few good night’s sleep without being 9 months uncomfortably pregnant and getting over the hospital as well. 

Well I have some exciting news, Caden is on room air!  No oxygen. He’s been there since yesterday afternoon and while he’s had a few desat’s he’s come back up on his own.  How great is that?! While he still could take a step backward and wear himself out, this is a very good sign. He might not have to come home on oxygen and just getting those nasal prongs out of his nose seems like it would be such a huge relief for him. He’s constantly trying to pull them out.

Check out the cutie picture of him to the left.  I have no idea what’s up with those wrinkles on his forehead.  He always looks very concerned and very serious. They took these along with his Halloween pictures (those will come later). I’m actually a bit disappointed they kept the tape across his lip. I really wanted to see him for the first time without any tubes or tape on him.  There’s no point in trying to cover up what we know is there. 

It’s actually interesting how comfortable you become with the way your baby looks.  At this point, newborns look like little chubby giants to me.  I’ve been seeing preemies for so long, nearly every day, at this point that’s its become the new “norm” for me.  My sister came up with me to the hospital yesterday and commented how small he was.  He looks very big to me at 5 lb. 2 oz. And his lip?  I was very concerned when we first heard the ultrasound report and that he had a double cleft. Of course I was worried about how it would look, and now?  It’s just… normal.

In other news, Daniel is very sick now.  I believe he has what Gena did earlier on in the week.  Poor guy, he’s laid up in bed.  I’m hoping it’s just a 48 hour thing as I don’t want him sick all weekend.

Caden is doing slightly better on his feedings.  In the morning he’ll take about 20 ml’s (his full feeding is 43 ml’s right now) but after that it averages around 10 ml’s. He had his ROP test yesterday and it’s gotten worse to a Stage 2 ROP in both eyes. Surgery starts at a stage 3 so they’ll be watching him and his oxygen closely. He also has an Inguinal Hernia, poor guy. It doesn’t hurt him but clearly is something that has to be fixed. Actually quite common in male preemies but it will require surgery and they are debating whether to do that before he leaves the hospital or to wait when he gets his other surgeries done.

He weighs in at around 5 lb. 2 oz. now and I do believe they are taking his Halloween picture today!  That will be a sight.  I’ll have to take a picture of the bulletin board where they post all the preemies Halloween pictures. They dress them up in these hand made outifts and they’re all different and all adorable.

Genevieve is back on track for school and is very excited about her upcoming birthday.  She’ll be 6 years old! She’s adamant about going to ChuckECheese’s. I personally hate the place. Really.  It’s overpriced, the pizza is blah, but if a kid see’s enough commercials on it they’ll be all over it. So that’s where we will be going, and DARN IT I’ll force myself to have a good time.

Wow, what a ride this whole experience has become. I just got a call from Caden’s Occupational Therapist and I need to schedule some time to go in because I have to learn how to place an NG tube.  What’s this you say?  It’s a nasogastric tube, a feeding tube threaded from the nose to the stomach.  It’s pretty obvious that Caden will not be taking full bottle feedings for a long while. How intimidating is that!! I listened to a debate between Caden’s Nurse and the NNP just 2 weeks ago on whether he could even do an NG tube through the nose versus the mouth because of the difficulty of inserting it with his cleft.  And now I’m going to be doing that?! 

So it’s a freak out moment for Mommy. Yeah.  I thought we might have to deal with just oxygen, tubes, tanks and now we get an extra tube in there. Hmm, is it a little weird for me to think that I’m bringing home a patient versus a little baby? Maybe he’ll be off the oxygen before then.  He’s doing quite well, he’s still on .5 liters at 21-24%. So while he’s having his A&B’s and forgetting to breathe once in a while he’s breathing pretty well on the whole.  We don’t even have to turn up his oxygen when feeding so he’s getting stronger.  He breathes very very fast though, probably because of some lung damage. It becomes very difficult for him to coordinate the suck, swallow and breathing when he’s over 70 breathes a minutes and he’s frequently up near 100.  It’s like running a marathon and then trying to eat dinner while your panting.

Gena is feeling better today as is Adessa.  Good news there, and I can tell they feel well because the fighting has started again. What is with sisters and the fighting and annoying each other?  Everyone asks if it’s Genevieve who starts it, which I guess would be natural because she’s the older sister, but it’s Adessa. Let me tell you though, Adessa can hold her own. I worry more about Adessa hurting Genevieve the the other way around.  She’s a spitfire! 

I can tell Karate is paying off too, whether this is good or bad remains to be seen.  Adessa told us that a little boy hit her at school today. When I asked why she said “because he’s a boy.”  Apparently that’s reason enough. But Gena, when she heard about it, immediately said “you need to block him Adessa like this.” And proceeded to demonstrate one of her blocks she learned in Karate. So between each other and school, I have a pair of fighters in training!

Well feeding problems continue, he’s getting between 2-8 ml’s on a feeding. Roughly 2 teaspoons. Everything is there; he’s awake, alert, mashing the nipple, oxygen saturations are good, and interested. It’s just going to be a long process trying to work up to full bottle feeds.

He continues to have some A&B’s, grade 0′s and 1′s. His oxygen is coming down though, last night he was at 21-25% on the .5 l. He weighs in at 5lb. 1oz. now! He’s getting big. He has reflux so can get really fussy after his feedings.

Caden’s next ROP test is this Wed./Thurs. His next head ultrasound is Oct. 25th. We are waiting on his 3rd test result on the state’s Newborn Screening. We’ll give more information on this next possible hurdle if the test results come back positive.

Both Genevieve and Adessa are very sick right now. They look absolutely adorably pathetic laying on the couch wrapped up in blankets. I think it’s just the Flu but I do hope they get better soon!

Today Caden turned 10 weeks old.  Since his birth he’s gained 3 lbs and 2 oz and is at a hefty 4 lbs 13oz now.  They lowered his oxygen flow to .5 l and is doing pretty well on it.  His oxygen is hanging around 25 – 28.  This morning he took 15ml from his bottle!  So he is making progress.  Daddy took a visit at lunch with his friend Alan and was treated to Caden’s back side explosion!  I remember when we were worried about it working, now I wish it would stop some times   He’s had no A&B’s for a couple of days now, so that is promising and his only big hurdle is his feedings.  Hopefully he’ll continue down this path.  All of the nurses say what a good baby he is, he’ll just sit there so quiet, Mommy and Daddy are hoping he continues to be that way when he comes home.

First off, Adessa had her echo up at Primary Children’s on Friday and she was perfect through it. She watched Cars and laid perfectly still while they did it, such a big girl! The excellent news is that she does not have another hole or defective heart valve. She has only an innocent murmur that sounds atypical. She’s fine and there’s no follow up needed so this is a huge relief for us.

All right, as Caden’s Mommy I have officially opposed his Occupational Therapist. Caden has only been getting 4-5 ml’s from his feedings. I’m in contact with some other cleft mommies and I’ve spoken with them about his feeding issues. I tried to communicate some of the ideas to the Occupational Therapist but she wouldn’t listen. So I went up for his nighttime feeding and decided to feed him the bottle that I think he should have with the method I discussed with the other cleft mom’s. He took in 12 ml’s! His highest ever. I went up again today and he got 8 ml’s. Still more then what the OT’s are able to get.

I imagine the OT will not be happy on Monday when she comes in and sees that I’m doing it my own way. I have to say that I love and appreciate the OT’s. While I’m being a bit dramatic, I do feel I know what I’m doing while feeding him and they have given me valuable tips to help. I just don’t agree with the choice of nipples they are giving him on his bottle which are clearly WAY too big for his mouth. He is getting tired and frustrated with the other nipples and the OT refuses to give up on them even though it’s not very successful. I’ve switched Caden back to the Haberman nipple and am giving him a few squirts in his mouth every couple of sucks he does. The OT for some reason wants Caden to do all the work himself. After talking with some other cleft mom’s they’ve told me that their healthy full-term babies still had to have the milk squirted in their mouth up to 4-5 months of age. He just doesn’t have the mouth structure to feed effectively and I couldn’t understand why we weren’t helping him out a bit more so just switched the nipples and did it myself. Not to mention that these bottles and nipples are made to be flexible for just this very purpose.

So Caden is growing well, he’s up to 2150 grams (4 lb. 12 oz.) and is on .75 flow for his oxygen. He had 1 grade 0 A&B yesterday morning. He’s so calm and alert when he’s awake, but watch out if you are late on feeding him. He gives many cues and signs when he’s ready to eat and if you aren’t watching for it he’ll get himself all worked up. He has 2 new roommates and Caden is officially the healthiest baby in his part of the NICU right now! He loves being swaddled with his hands up near his face and mommy’s finger is the best pacifier he has found. He’s just a little doll and we can’t wait until we are able to bring him home.

Daniel and I were able to go up to the hospital last night together. This was a particularly special occassion as I was going to feed Caden. First off, the nipples they are trying him on now, called Pigeons, were huge! I mean seriously big for his mouth. This little boy is so eager to eat and there’s just not enough options in nipples as they are either too small or too big. There’s literally nothing in-between. I was able to get about 4 ml’s down him in a 1/2 hour though with only one coughing episode. The he decided to desat a little bit and just wanted to go to sleep.

His head is getting lop-sided, the nurses are favoring his left side a bit too much. It’s not freaky lop-sided yet but noticeable.

I see I completely forgot to post that he had another ROP test for his eyes. He now has ROP (retinopathy of prematurity) at a Stage I in both eyes. For those wondering what this is:

ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness. Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision.

It can progress very rapidly but at Stage I is considered mild and he will outgrow and most likely have normal vision. He’s at risk later on for things like lazy eye, crossed-eyes and more but nothing serious. They’ll do another ROP test next week just to make sure that it’s not progressing.

We have Adessa’s appointment this afternoon up at Primary Children’s Hospital for her echo and we’ll post later with the results on that.