Coburn Kids

Daniel and I went up to see Caden together today. We had a lovely visit and his primary nurse, Jeanette, was there. She’s great and we are so pleased she chose to be his primary. Caden’s oxygen was good while we were there, in the high 20′s. He was very upset today though, doing his silent cry/scream, since he can’t make noise because of the tubes down his throat. It breaks mommy’s heart to see him crying and turn this deep shade of red with no sound. I think it would actually make me feel better to hear him cry versus seeing his silent screaming.

He had a bit of vomit today, about 4 cc’s. They are fortifying his formula still to 24 calories and it doesn’t sit well with his tummy. Tests this week for Caden include: echo, x-ray, more bloodwork, bone test and his ROP test. We’ll give updates on those as we get them. No weight for Caden tonight, his little roomie had her family there tonight so they were going to weigh him later.

He rooms with the cutest little girl we call Baby High (High is her last name) who was a 24 weeker. They weighed the same at birth, 1 lb. 11 oz. so that should give you an idea how small Caden was for his gestational age. They are both on the oscillator and we like to see their competition each night at who is doing better weaning from their ventilator. When Caden gets upset his oxygen plummets, when Baby High gets upset her heart rate shoots up. So their monitors are constantly going off and their nurse is serenaded with beeps and dings morning and night.

Genevieve had a busy day yesterday. It started out with a primary activity where they went over fire safety and had a fire engine with firefighters there. Next she went to a Princess birthday party yesterday where everyone dressed up as a princess. You can see a picture of her all dressed up to the left. She had a great time with all the other little princess’s. Adessa was a bit sad about not being able to go.

Caden is having a great couple of days. They lowered the mean pressure on his oscillator and his oxygen is staying steady in the 30′s. Feedings are still going well and since he lost a little bit of weight, he’s at 1720 grams, they have decided to fortify his feedings up to 24 calories. He’s still getting daily x-rays and bloodwork done but those are coming back great.

We took Genevieve and Adessa to the Fair yesterday with Grandma, Grandpa and their Uncle Jason. They were very excited to go on all the rides and Adessa begged for cotton candy that she promptly began shoving in her mouth as fast as she could. We didn’t get home until 10:30 PM so the girls were exhausted but we had a blast.

Caden is doing very well, his oxygen is in the 20′s and low 30′s. He’s tolerating his feeds and oral medication very well. They gave us the results of his 3rd head ultrasound and his brain bleed is unchanged. He has another ROP exam for his eyes next week. He’s getting another x-ray and blood test this morning but that should go well. With Caden’s oxygen so low his lungs are doing fine. He’s gaining weight all right as well, he’s at 1730 grams or 3 lb. 13 oz.

Genevieve and Adessa are enrolled in karate, or more specifically Kyuki-Do. The little picture at the side are of them in their uniforms or Gi’s! Genevieve goes Tuesday and Thursdays for 45 minutes, Adessa goes for 30 minutes every Thursday. So far they loooove it. Master West is their teacher and their first rule (all you parents will chuckle and applaud) is ‘Obey your parents the first time.’ And would you believe it?? It’s working. Sure they’ve only had like 2 lessons but it’s rubbing off all ready.

I’m especially impressed with Adessa and how well she is doing listening and following instructions in class. Genevieve, the first day after class went straight to her room to clean it up (without being told!) and went in to get ready for bed the first time when she was told. Okay, so all this excitement might be a bit premature as the novelty and newness of it wears off but we can hope! Gena and Adessa are pretty good kids in themselves really, we signed them up for karate for fun because we couldn’t pull off all the soccer practices that were going to have to happen if we put them on a team this year. So it was a great alternative and the practices are right in our neighborhood.

In other news, Gena is indeed moving to the first grade. When Gena went in for the kindergarten assessment they do on all kids going into school to see where they’re at, her teacher mentioned getting her tested based on just observing her. We had originally decided not to pursue this too much as we’ve been told numerous times that it was nearly impossible here in Utah. That it’s just not done. We told her kindergarten teacher that we had all ready had Gena tested 9 months ago and she was interested in seeing her scores. It was a bit late coming, wasn’t exactly planning to be in the hospital and to have a baby right when she started school, so we sent that off this last Monday. We tried to make it clear that we were really interested in the teacher’s opinion on if this was a good move since she’s been able to see her these past few weeks. She responded that she normally wouldn’t recommend it but she could see Gena was VERY (yes she capitalized it) advanced. So she sent off her scores to the school’s guidance counselor and the counselor commented that she “almost couldn’t believe how high her scores were.” So they are fast-tracking that and it should happen sometime next week. They are even further pushing to put her in the ALPS (accelerated learning program) first grade class where she would be doing essentially 2nd grade work but this would involve a school transfer. With Caden and all the surgeries still coming up we have a lot to consider for this and coordinating getting her to school and being able to get her home if we needed help from a neighbor, etc.

I guess I’m maybe too overly critical of Gena. It’s hard to believe that I have such a bright child that scares me because I can’t keep up or sometimes even comprehend where her learning is at right now. I have no idea what’s normal! When she started reading at 4 I seriously thought that nowadays this was probably a common thing. That she’s teaching herself how to type, I figured it was just part of her interests. When she started arguing with me over singular versus plural nouns on her preschool homework. That she wants to do multiplication, I mean… I have no benchmark. Gena has her slow areas, coordination especially. Her fine and gross motor skills… well let’s put it this way. Daniel and I fully accept that she has no natural ability for sports, dancing or even being able to button her own pants or tie her shoes. Her 3 year old sister is capable of things she’s not in terms of climbing, buckling herself in the car, putting on socks and more that Gena struggles with. We are very proud of her though and she’s ecstatic to start going to school all day and having lunch in the cafeteria.

Daniel and I were able to go up to the NICU yesterday evening together. I was able to hold Caden as well while they changed his isolette. You’ll see the pic to the left of the coordination it takes to just switch him out from one to another. He gets his bedding changed nightly but the isolette is changed only every 2 weeks. The nurse last night Maureen, was actually hesitant about the change and the holding since Caden is not that stable and his oxygen fluctuates so much. Caden did fabulous though! Didn’t desat once and looked comfortable with his eyes closed the whole time. Yeah!

The NNP yesterday, Debbie, showed us some of Caden’s lung x-rays. It was very informative to just see the difference between his good and bad ones. His lungs looked clearer yesterday night, not as much white. We were correct in that it switched lungs. Now it’s affecting both lungs but unfortunately this is common for preemies. Not a good thing, but common for lung disease to switch lungs and affect both lungs since he’s been on a ventilator for so long.

Caden is now on full feeds, about 9.7 cc’s an hour and tolerating them well. He’s gaining weight pretty good, 1710 grams or 3 lb. 12 oz. His oxygen was in the 40 and 50′s last night but did manage to come down to 39% by the time we left. Caden also had his last IV taken out and is now receiving all his medications orally. Now this is most likely a temporary thing but to not have anything poking in him is a big milestone in itself.

No idea if that title applies really. Caden got his echo back for his heart and it doesn’t show any signs of pulmonary hypertension or PDA so good news there.  Doesn’t explain his lung but at least his little heart is strong. They are still getting some secretions from his lungs but it’s decreasing. His oxygen has been between 55-65% tonight so not too good there.

Caden is tolerating his feeds very well though, he’s up to 9.7 cc’s an hour and only getting minimal residuals.  His left lung, I have no idea if it’s changed or if we just misheard that it was the right, still looks “not so pretty” as his nurse described it.  Very patchy and hazy on his x-rays. They were supposed to do another one tonight at 6:00 PM but that didn’t happen for some reason that his night nurse is looking into.

He’s having a good urine ouput on his diapers but he gained quite a bit of weight tonight.  He’s weighing in at 1710 grams (3 lb. 12 oz.) so the nurse wants to re-weigh him later since it’s a 110 gram gain. A preemie should gain about 15-20 grams a day (around an ounce).  He had a blood transfusion earlier today as his blood platelets (they clot the blood) and hematocrit (measures the proportion of blood occupied by red blood cells) levels are low. Understandable since they have been withdrawing more blood from him for tests.

So we’re not sure where Caden stands right now. The all important and frequently asked question “How is Caden doing?” is simply, we don’t know. They are trying to reinflate the lung that is collapsed but they keep hyperinflating the other lung. So it’s a great balancing act right now. Hopefully his x-rays over the next couple of days will give us more information.

It’s true, Caden is now causing problems for himself! Yes, tonight we can put blame on our poor little guy. Caden pulled his feeding tube 1/2 way out and they believe some milk from his continuous feeding tube spilled into his lungs. We won’t know for about 12 hours as that’s when they can usually see it we’ve been told. They ordered another x-ray tonight and then they’ll do an additional one tomorrow sometime.

We don’t have word yet from Caden’s echo, we’ll probably hear something tomorrow. Caden lost a little bit more weight tonight, 1600 grams so about 3 lb. 9 oz. This is a good thing as it means he’s getting rid of some of his excess fluid.

Caden’s also thrown up 3 times tonight though. They tried fortifying his milk tonight and his tummy apparently did not like that. They have stopped his feedings for now and are increasing his IV fluids until they can find be sure as to why he’s vomiting. His oxygen has been in the 30′s and 40′s and is a bit high right now as he’s been stressed.

Update: I just talked to the NNP and they think things are going ok and they are going to start his feedings again. They are going to go back to the regular milk which will hopefully prevent him from vomiting anymore. Also they said the Xray looked ok, and his oxygen is decreasing a little bit he’s in the low 40′s now.

Daniel and I went up to see Caden together today while my parents took our girls to church. Caden’s x-ray today showed a complete white-out on his right lung (black is air on an x-ray). Speaking with his NNP Brittany, they are not sure if it’s fluid or tissue they are looking at. They have been getting a lot of secretions from Caden so it’s most likely fluid that they are seeing. They believe this could be from either an infection (not likely since his bloodwork is coming back fine), his PDA (hole in the heart) re-opening, or another occurrence of his pulmonary hypertension. Monday morning they have scheduled another x-ray to check the lung and an Echo as well to check for the PDA and pulmonary hypertension. His oxygen has been fluctuating a lot from highs of the 50′s, but as of our latest call he’s at about 30-33% so that’s a bit of good news there.

Caden’s feedings have been going excellent though. He’s receiving 8.5 cc’s every hour now on the continuous drip and only has trace to no residuals. He’s still having a lot of secretions. He lost a little bit of weight today, he’s at 1660 grams (3 lb. 10 1/2 oz.) which could be from his Lasix medication and that he’s getting rid of some fluid. They also did his length tonight and he’s at 37 1/2 cm (15 inches) so he’s a tiny thing but growing!

And the ride continues! We had long talks with Caden’s primary nurse Jeannette and an NNP, Brittany about his lungs today. Turns out that it was not a collapse but his x-rays had come back hazy and the right lung wasn’t inflating like it should. They did a follow-up x-ray today and the positioning worked. His bloodwork came back okay with no signs of infection but his platelets are low so they’ve done another blood transfusion. The extra blood has pushed him up to 1700 grams or 3 lb. 12 oz. 

They gave him a medication called Lasix for his edema/swelling so that he can hopefully pee some extra fluid off and his diapers Saturday night have been very good. Caden’s oxygen settings are up in the 50′s right now. This isn’t unexpected as they try to wean him off the nitric (still at 10ppm) but they are keeping a close eye on it. In addition, they are still getting quite a bit of secretions from his lungs that they are watching.

His feedings have been going well. They have upped him to 6.9 cc’s every hour and he’s tolerating them well.  He’s having some problems with gas and spit up since they have him on the continuous feeds and he’s not getting a break inbetween.   

We were able to bring the girls up to see Caden today and they were very excited. They love to see their little brother. Adessa was telling us on the way up to the hospital that she was going to make funny faces at him to make him laugh. Genevieve was so surprised at how much bigger he looked. They are both going to draw some pictures for Caden to hang over his isolette.

Caden is having some bad days. His right lung has partially collapsed and his oxygen requirements are in the 35-50% range. They’ll do another x-ray on Sunday, we believe, to see more of what’s happening and for now they’ll try to help him out a bit by positioning him more toward the collapsed side. His nurses are getting a lot of secretions right now from his lungs as well and his latest blood work came back suspicious of an infection. Saturday morning they’ll run another blood work up to see if he’s truly headed toward some type of infection but he’s clinically more sick then he looks. The nurses and NNP have commented that he doesn’t seem to be in distress and that his skin color and reactions are fine.

His feedings, that he has been doing fairly well on, are starting to give back some residuals again. He’s taking 5.1 cc’s every hour and his latest check for residuals have given back 3 and 5 cc’s. They check every 4 hours to see how much he’s giving back and will tolerate up to 5 cc’s of residual so it’s something they are keeping an eye on as well.

The weaning of the nitric, morphine and hydrocortisone is still going as planned and he seems to be tolerating those well. Daniel and I are going to try to get the girls up to see Caden on Saturday before any type of RSV starts hitting Utah as the NICU will then be closed to all siblings/children. They are very excited to see their baby brother again.