Where has time gone?

I have been completely MIA from the computer and internet for a little over two weeks now. I've been trying to update my "delivery story" for two weeks now when I get a few minutes to myself but of course it will take more than a few minutes here and there.

Things are going well. I'm going to start updating Kaleb's doctors appointments everyday one happens, we had four the first week of his life and three this second week so I've got a lot to catch up on.

Saturday, January 1st:
Kaleb has been home for one day now, what a great way to celebrate the New Year...with a new family! Today we took Kaleb to Arnold Palmer for an updated bilirubin test to make sure his jaundice is going down instead of up. We were told that if the numbers were really bad then the hospital would call us, but if not the results would go to our pediatrician and we would get the results when their office opened back up. Good news, jaundice went down and he never needed lights (like Nolan did).

Monday, January 3rd:
Dr. Marcus, Pediatrician
Kaleb had his first well child check, Dr. Marcus wasn't in the office so we saw the other doctor in her practice. She didn't know about Kaleb prior to this visit so it was pretty short. She did confirm my concerns for regarding his head which she described as not being round and they would follow up on that. I didn't even realize it wasn't round, but instead we can feel multiple "soft spots" all over his head instead of the normal soft spot that newborns have in the front of their head.

Tuesday, January 4th:
Today we went back to Arnold Palmer again for Kaleb's follow up renal ultrasound which is a scan of his kidneys. While he was in the NICU he had one done and it showed his kidneys were slightly enlarged which needed to be followed up on. Kaleb did great through the ultrasound and the tech said we would have the results within a few days. It's been nearly ten days later now and still no results...apparently they MAIL the results to our pediatrician and she hasn't gotten them yet. Grr...

Wednesday. January 5th:
Dr. Barlow, Cardiologist
While Kaleb was in the NICU he had a complete cardio workup due to the concerns during my pregnancy for heart defects. There were some concerns from his echocardiogram while in the NICU so there is another follow up appointment. Kaleb had another echo and an EKG with the doctor and most everything was okay. Kaleb still had his PDA open (this is a valve that all babies have while in utero and it closes up within 3 days after delivery). The doctor said it is smaller than it was reported to be while he was in the NICU so he is hopefull it will close on it's own. We go back in a month and if the PDA is still open then he will need surgery soon to close it. Kaleb also has a hole in his heart which is allowing extra flow of the blood however that is not as concerning as his PDA. If the hole (PFO) is still open when he is 4 years old then he will need surgery to close it up at that time, but that is a long time from now and not something I am going to let myself worry about at this point.

Thursday, January 6th
Dr. Blumenfeld, Opthamologist
During Kaleb's stay in the NICU his development assessment showed concerns for his ability to see. Also, Kaleb's genetics pediatrician had concerns that he was missing part of his pupil. The doctor said that all of the working parts of the eye are there however he can't know for sure if the brain signals are being sent for his vision to work. He also said that he can already tell that Kaleb is near-sighted which I have no idea how he knows that, but wow. I'm not worried about the near-sightedness as long as Kaleb can see. It's really hard to go through everything we are going through, but I did not prepare myself for my child to be blind or deaf (which is another possibility as well). My heart would be broken...again.

Monday, January 10th
Dr. Marcus, pediatrician
Kaleb had another well child check but this time actually got to see Dr. Marcus. She is such a great doctor! She came in the room and had already read all of his discharge records from the NICU and had a list of all of his doctors and made sure we liked each of them or she would refer us to a new one. She was concerned about how I was doing and made sure to address that with me. Dennis voiced a concern about Kaleb favoring one side of his body (I haven't really noticed that much) and she said that she agree and believes he may have "torticollis" and if that continues and is there at the next appointment in two weeks then he will need to start some type of therapy to correct that. Basically he is only using the muscles on the left side of his body, mostly his neck muscles to do everything and his right side muscles aren't getting used.

Tuesday, January 11th
We had our SSI interview to try to get monetary help every month due to Kaleb's dissabilities. There's a big chance we won't be given the SSI because we are looked at as making "too much money". I won't continue with my thoughts on this...I'll spare you that soapbox :) They have up to 90 days to notify us whether we were accepted or not, keep your fingers crossed please!

Wednesday, January 12th
Dr. Albright, Orthopedics
While in the NICU, Kaleb had an ortho consultation. The doctor at that point said that he believes Kaleb has something called "Congenital vertical talus" which would need to be fixed by surgery and then casting. He said that the director of the program, Dr. Albright, works with these children most often so we met with him. He felt Kaleb's bones on the side of his feet and said he doesn't believe he has that condition but wanted updated x-rays. This took about 15 minutes and the results went straight to his computer in the exam room so he could show us all of Kaleb's bones in his feet. He said based on the x-rays he still doesn't think he has this talus condition and believes Kaleb won't even need surgery and may just need casting. He taught us how to do his feet exercises to help with extending his feet down so we do that at most diaper changes now. We go back in a month to get another set of x-rays to see if it is easier to see the bones to make a decision. I know he is an expert but I just don't see how only casting will fix his feet. It's not just his feet but his tibia bones that connect to his feet are also rotated in an incorrect position but I'd really love for him to not have to go through any extra surgery!

It seems like so many doctors for Kaleb only being two and a half weeks old, my goodness! We finally don't have to see any doctors next week, definitely looking forward to that. The next appointment I am really looking forward to (well not really, but ready to get some answers) is Kaleb's updated hearing test with an audiologist at the hospital. Kaleb did not pass either of his hearing tests while in the NICU. There are children who fail the hospital tests but pass the out patient tests because they are more in depth. I'm really hoping this is the case. Kaleb startles when there is a loud noise or our dog barks which is reassuring that he can at least hear some wave length of sound.

Nolan is loving having a little brother...at least I think. He tries to help by bring us his pacifiers or burp cloths but then throws them at him. He also tries to pick him up and put him in his baby seats or swing or wherever he wants him. Nolan has also regressed back to wanting to be a baby again, when he finds a bottle of formula he tries to suck on it, he sucks on Kaleb's pacifiers, and lays blankets on the floor wanting to be swaddled. I'm not able to hold Nolan until Kaleb is 4 weeks old which is absolutely killing me. It's really hard not picking up your 17 month old, especially when he recently ran into a corner at school and cut his forehead open and had to get glue stitches. I feel like a terrible mom! I'm trying so hard to make Nolan feel special and not less important than Kaleb but it's really hard to do that when I can't even pick him up. I do what I can and have already warned him to be ready for a full 24 hours of me holding him and cuddling once I can pick him up!

Kaleb facts
- he snores...loudly everytime he is sleeping (he sleeps in our room at night...its like having an old man snoring in your room but you can't make him sleep on the couch).
- he lost his belly button stump today, yuck! but diapers are so much easier now.
- he was going 4 hours in between feedings and over 5 hours at night (sleep!) but is now waking up about every 2 hours to eat...we are so tired!

1 thoughts:


SO glad to hear that things are going pretty well for Kaleb. I've been thinking of you all this time and wondering what was happening with him. I hope he ends up having better eyesight and hearing than the doctors think. And I also hope his heart problems resolve themselves. But if not, he is still your little miracle child and it sounds like he's doing really well!

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