Friday, December 17, 2010
Wednesday, December 15, 2010
The surgery went well. He was in quite a bit of pain when he woke up so they immediately gave him more pain meds and he fell asleep again. He's eating very well, except he still likes the flavored pedialyte added to his bottle but as long as he's taking in enough fluids they don't mind. Hopefully we will be going home in the morning!
Tuesday, December 14, 2010
Saturday, December 11, 2010
I am so thankful that his thrush looks to be going away. His doctor thought it was completely gone but I am not going to take any chances and I am continuing to give him his medicine until he's finished with it. We had to give him a glycerine suppository on Monday, he had a big blowout, 9 days worth! But he hasn't pooped on his own since. His doctor said that because he wasn't eating enough his body was probably reabsorbing it all and that's why he had not pooped yet. He had only been eating 1 to 2 ounces at a feeding, which is obviously not enough. He refused to even let me put the bottle in his mouth after he would eat an ounce or so. I had to force him to eat another ounce and that was not fun. I figure out that because of one of the medicines he was taking the milk was not tasting very good to him. He would eat all of the prune juice we had to give him but would have nothing to do with the milk. So I started adding the prune juice to his milk and he would eat it all! Now he will eat about half his bottle but refuses to eat more unless we put pedialyte in it. (His doctor preferred pedialyte over juice to get him to eat). It has a fruit flavor and he really likes it. But he is eating at least 4 ounces a feeding now! We will meet with his surgeon on Monday and hopefully reschedule surgery, if not his lip adhesion surgery then at least set a date for his formal lip repair.
Monday, December 6, 2010
Tuesday, November 30, 2010
Well we had surgery rescheduled for Thursday but we met with the surgeon yesterday and had to cancel it because Nick still has thrush, even after more than 14 days of treatment. Poor baby, it's so frustrating because I feel like I am doing everything I can but it's not helping. I give him his medicine, wash and boil his bottles/nipples/pacifiers twice a day and he's still not eating as much as he should be either. He lost 2 ounces from last week, yesterday he weighed 11 lbs 4 oz. He barely eats 3 ounces at a feeding, sometimes less, and he takes a very long time. They tell us to limit his feeding time to 30 minutes because after that he starts burning more calories than he is taking in. At least he is not screaming his head off halfway into the feeding and he is eating more than he was 2 weeks ago, but it's just not enough.
Saturday, November 13, 2010
Thursday, October 28, 2010
Wednesday, October 27, 2010
Sunday, October 10, 2010
Nikolas met with the opthamologist at Children's Mercy on Thursday. It was not fun because he hates his eye's being touched, and especially being pried open then having a bright light shown in them. Thankfully, they did not have to use the horrible speculum things again, oh my those things are torturous! She explained to me how coloboma's are formed: when babies are forming in utero their eyes are like tubes coming off their brains, then as they continue to form they become upside down u's, and eventually they reform to create o's again and form the whole eye. Well Nick's eyes did not come completely back together and unfortunately this is the same with his retina's and optic nerves. She said he will probably have functional vision but she couldn't say to what extent. There is nothing they can do either, maybe he would need glasses one day, but there's no procedure they can do. She gave me a bunch of information about services for children for the visually impaired.
Sunday, October 3, 2010
Friday, September 17, 2010
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.
Wednesday, September 1, 2010
Wednesday, August 25, 2010
Well our little Nick is moving right along with using a bottle and getting kicked out of Children's Mercy! Today they said give him as much as he wants and he was eating 60 mL so we will see how much he really wants! They have gradually increased his feeds from 1 mL all the way up to 60 mL so he really is doing great with eating. He is using a special nipple called the Haberman, it looks like this
It's pretty amazing really, and takes a lot of coordination too! Since Nick cannot create a vacuum in his mouth he cannot get milk out of the nipple without some help. So while he sucks on the nipple I have to squeeze the nipple then release when he stops sucking. Plus he has to be leaning sideways so that the milk doesn't pour down the back of his throat and he can slowly swallow the milk. It takes a lot of attention and patience but he is a champ at it! He is also pooping like crazy! That is always a good sign!
He also got his feeding tube removed! Yay, that thing was so annoying and I'm so glad its gone!
He did have an MRI of his brain yesterday and they did find some things were smaller than normal but they don't seem to worried about it. They did it more for a baseline and they will continue to do MRI's to see how his brain is developing.
He also had his hearing screening yesterday. It took forever and he was getting so fussy. They said that he does have basic hearing but he does have hearing loss in both ears, the left is worse than the right. He may need hearing aids eventually. But he did have fluid in both of his ears, which apparently is not that uncommon in newborns, especially c-section babies. So they will repeat the test in a couple weeks and continue to monitor the fluid in his ears. Most all babies with cleft palates eventually have to have tubes put in their ears to help with ear infections. But they don't usually do it until 6 months old.
Occupational therapy has been working with the contractures he has in his fingers on both hands, they are talking about making splints to help. But he has already shown some improvement and hopefully they won't cause him any issues as he grows.
Really overall, Nick is doing really good but we still don't know if there is some underlying cause for all of his issues. We are still waiting on the chromosome testing results and should have them in the next couple weeks. I hate the waiting game but it's all we can do right now, wait and pray, pray a lot!
He's in a crib now and is keeping his own body temperature steady and they will be taking out his midline IV (in his head) today too!
We know how much a blessing he is and we want to be able to give him the best life he can have regardless of his disabilities.
Please continue to pray for our little Nick, that God will continue to do miracles in his life and that Joe and I will have the strength and wisdom to take care of him the best we possibly can.
Wednesday, August 18, 2010
Sunday, August 15, 2010
Well he's here! Our beautiful little Nikolas is here! He was born at 9:52 a.m. on Friday August 13, 2010. He weighed 7 lbs. 7.7 oz! And he is 19 1/2 inches long. He has brownish hair with blonde highlights and quite a bit of it! He had some trouble breathing at first and had to be on oxygen for a little bit, mostly because he had a lot of mucus he was trying to get out.
You thrill me, Lord, with all you have done for me! I sing for joy because of what you have done.
~ Psalm 92:4
Today he got his feeding tube put in and got to eat for the first time. He handled it pretty well and only threw up a little bit. He also pooped for the first time today! That is very good because they were somewhat worried about his bowels.
He is such a sweet little boy and he loves to snuggle and just sleep! He loves to suck on his pacifier too and sometimes his hand if he can get it in there.
Please continue to pray as we keep taking things one day at a time. God is in control!
p.s. if I forgot anything I will try and keep updating the blog with info and anything new we find out
Thursday, August 12, 2010
Monday, August 2, 2010
Sunday, August 1, 2010
Thursday, July 22, 2010
The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.
He will need an MRI to determine if he has tumors in his brain, which would give us a definitive diagnosis of TSC. It is possible that we could do the MRI before he is born but they may not want to do it until after he is born.
I am devastated. Even if he doesn't have TCS he has all these growths all over his little body and if his heart continues to grow it could cause it to stop working even before he is born. I don't know what to do, I'm a mess. It just scares me that these growths happened so fast. When I went for my 32 week ultrasound, which was a biophysical profile, they did not see anything at all. I don't know if she missed it or he wasn't having issues then. I know I need to put it in God's hands because I obviously cannot control this but this is so hard. I just want him to be healthy. Please continue to pray for him, I know God can do miracles and a miracle would be so wonderful right now.
I will continue to update as we get more information.
Wednesday, July 21, 2010
Well the little booger would barely let us see his face! He kept smushing his face into his placenta and putting his hands and arms in front of his face. We were kinda frustrated because 3D ultrasounds are not covered by your insurance, you have to pay for them out of pocket because they are elective. But we did get a couple shots that weren't too bad and allowed us to see his face a little. The pictures should be on the next post!
I decided to start this blog to keep all our friends and family updated about our little Nick. His due date is August 21, 2010 and we have a c-section scheduled for August 13, 2010.