Friday, September 17, 2010

Meeting with the Cleft Team

We met with the cleft team on Tuesday of this week and everything went very well. Nikolas weighed in at 8 lbs 10 oz! That is almost a pound in a week! They were very pleased with his weight gain and so were we! I am pumping and he gets breast milk exclusively, so it takes a lot of time but obviously its well worth it because he's doing so well.
Well he will have his first surgery at about 3 months old. It's not going to be his formal lip surgery to make it look 'pretty', it's called a stitch procedure and they basically just sew his lips together with about 8 or 9 stitches. This will take the place of the tape he has to wear now, which is very annoying. Nick hates when we put it on and when we have to replace it is even worse. He screams bloody murder when we have to remove the duoderm, which sits under the tape and doesn't have to be changed very often but it's painful to remove from his delicate skin. The procedure will be done by Dr. Jang, his doctor, Dr. Kaye will be on maternity leave then. But she will be back to do his formal lip procedure in December or January.
He also still has fluid in both his ears, the ENT nurse practitioner that we saw said that he might just have fluid in his ears and that's how he is. We've been keeping him elevated since he was in the hospital but it hasn't helped and he will eventually need tubes put in to help drain the fluid. She explained that sometimes it doesn't work though, with babies with cleft palates sometimes when they spit-up it can come out of their ears because the eustachian tubes are more straightened than sloping. There can also be a lot of drainage that doesn't go away which can be a mess to deal with. I just really want him to be able to hear. I know he has some hearing loss but I know he will be able to hear better overall if he doesn't have the fluid in his ears. But it may not be until he is 6 months old that they will do tubes and by then he will have lost so much time and will have lost out on hearing for so long that he will be really behind on speech and development. It breaks my heart to know there is nothing I can do to make things better for his hearing and sight. We still don't know much about his vision yet either, he sees the opthamologist in a couple weeks so maybe we will know a little more information then.
He has about half a dozen other appointments with other specialists, lets see, there's neurology, nephrology, urology, hearing and speech to have another hearing test done, ENT, Occupational Therapy, Genetics, and we have Infant Toddler services coming out next week as well.
It would be extremely overwhelming if I had to take Benjamin with us to all of the appointments but thankfully my father-in-law, Theodore, is able to watch Ben when Nick has his appointments! I am so grateful to him!
But overall, he is doing really good, he's eating well and sleeps A LOT! He wakes up about twice a night but he sleeps almost all day long, only waking up to eat or poop!
We still keep taking everything one day at a time and we are just working on growing right now!

Wednesday, September 1, 2010

Finally home!!

Sorry I didn't update sooner but Nick was released from Children's Mercy on August 26th and things have been somewhat hectic since then. He finally got to come home and sleep in his own bed for the first time. His big sister Brianna and big brother Benjamin got to hold him for the first time too! Ben just loves him and wants to kiss and hug him all the time! Brianna wants to help change his diaper and give baths too! We are finally a family again! No more running back and forth from the hospital to home and trying to balance being with Nick and being with our other two children!
Since we've been home, Nick has been doing really well. Still eating like a champ and just loves his swing! He sleeps a lot, sometimes too much I think, he really doesn't cry too much either. Only when he's hungry or trying to poop! He also really likes his pacifier and we found one that he can pretty much keep in by himself which is a huge difference from sitting there holding it in all the time!
Home health came to visit him on Saturday and he weighed 7 lbs 6 oz, so he was almost up to his birth weight. He had his pediatrician visit on Monday and he was at his birth weight! 7 lbs 7 oz! Yay Nick! They will continue to do weight checks to make sure he is gaining the proper weight. He will have his first cleft team appointment on September 14. And he will have a whole slew of other appointments in the next couple of months. He will have appointments with Hearing and Speech, Opthalmology, Orthopedic's, Urology, Genetics, Occupational Therapy and Nephrology.....yeah, we're going to be very busy.
We got amazing news the week after Nick was born that my sister and her husband had a baby to adopt! It happened so quickly and within one day they had their beautiful little boy! Mason Lee! He had a couple complications after he was born, mainly because the birth mother did not know she was pregnant and did not receive prenatal care. But he is very healthy and doing great! Plus, since God has blessed me with an abundant milk supply, we decided to provide Mason with breast milk as well! I've heard he really likes it too! I really feel that God sent little Mason at the perfect time and God gave me lots of milk for a reason and I feel blessed for being able to give Mason such a gift.
God has blessed our family so much and I continue to be joyful and thankful to Him everyday! Everyday that I get to spend with Nikolas and my family is a blessing from God and I can't imagine not being overjoyed by what He has given us.
As always, continued prayers are always very welcome and needed for our growing little boy!

From everyone who has been given much,
much will be demanded; and from the one who has
been entrusted with much, much more will be asked.
Luke 12:48