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!

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

Moving along!

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.

Just waiting...

Well Nick was transferred to Children's Mercy yesterday and it has been such a difference in hospitals. SMMC does not have a bad NICU but we really felt like he was just in limbo there because it seemed like they weren't going to do anything more than just keep him stable until he was transferred. It was very frustrating that they were not feeding him for a few days, he seemed uncomfortable and all we wanted our little boy to do was eat...it's the most natural thing you can do! But almost immediately after we got to Children's Mercy they gave him a feeding tube, did an x-ray to make sure it was in the right place and starting giving him 1 mL/hr continuously. We were so happy and relieved that he was getting something good in his tummy! The next day they increased his feeds to 2mL/hr. Every once in a while the will put a syringe on the end of his feeding tube and suck out any residual left over from that feeding. Well towards the evening he had quite a bit of residual left and they decided to stop his feeds for an hour then restart it. He did well after that and today they increased his feeds to 4mL/hr! Praise the Lord! But he had not pooped since Tuesday so they decided to give him a suppository. He finally pooped some but not a whole lot, but I don't think they are worried about how much he poops as long as he poops :o)

He is also a little jaundice, so he is under a bili light and they also put a bili blanket under him to help get rid of the jaundice faster. I am really starting to not like it though, because he cannot be out of the light for very long so the first day I didn't get to hold him at all, then Wednesday I was only able to hold him for half an hour. But thankfully today we are able to hold him a couple times for an hour each. His bilirubin level was 18 Tuesday, 14 yesterday and down to 9 today so we are really praying that by tomorrow he will be off the lights totally and we can hold him all we want! Yay!

Oh, a little good news! Before we left SMMC some of the rapid tests he had done for trisomy 13 and 18 came back negative! What great news! We are still waiting on the other chromosomal tests that take much longer to get back, maybe by next week.

The ophthalmologist came and saw him almost immediately. They had to dilate his eyes. I wasn't there for his exam but Joe said she had to pull up his eyelids and he was screaming so bad that Joe had to walk away because it was bothering him so much. That broke my heart, I know they need to do testing and such but it's so hard to know that your child is in pain, even for a moment it is so hard to watch. So he has a couple different things going on with his eyes. In his right eye he has a coloboma. The doctor didn't say that this would cause any issues. He also has holes in the back of both eyes, again she didn't know if he would have vision problems yet, they will have to do more testing in a few months. Also, his left eye is smaller than his right and slightly hazy. We are not going to stress over any of his eye issues for obvious reasons, we don't know what it means. We don't know if he will be able to see or if he will just have to wear glasses or have surgery or what. We are just praying that God will take care of him and hopefully he will be able to see all of God's beautiful creations.

They are continuing to do other testing and as of right now we have no other information or answers as to what is going on. We met with a genetic counselor to go over family history. They will be the doctors that will take all of the information from exams, family history, different testing and chromosomal blood work to find an answer as to what is going on. If it's just a spontaneous occurrence or if he has some sort of disease or syndrome.

They said that if he continues to do well with his feeds then they will have an occupational therapist come and start working with him and us to start using a bottle.

The person from the cleft team came and talked to us as well. She was just explaining a little more about future surgeries and timeframes. She also put a strip across his top lip to pull his cleft together so it will start forming better and not be so open. He already looked so different with the strip holding his cleft together.

I also spoke with the Nurse Practitioner, Laura, and she told me that if he continues to do well with his feeding and no other issues arise and everything looks well then he will be able to come home! She said it might take a while but we are hoping and praying for the best!

Joe and I have been trying to coincide taking care of Brianna and Benjamin and going back and forth to the hospital. It has been very hard trying to balance everything and make sure our kids are not feeling left out or upset about us not being around very much. Especially the last couple of days because Brianna just started kindergarten and Ben got sick the other night and was throwing up, but we have lots of family and friends helping us and it has really been a blessing to know that they are well taken care of while we are at the hospital. Thank you such much everyone!!

I am trying to remember to be joyful and thankful everyday and just try and enjoy my little boy in these first few days of his life. He is such a sweet baby and he really doesn't even cry very much, only when he has gas or someone is pricking his heal or drawing blood! But I would be too!

Thank you for the continued prayers as we try and figure out what's going on with our little guy, they are so appreciated and needed.

More bad news and miracles!

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.

The neonatologist came to examine Nick and found some more issues going on. He didn't know what any of these things meant but we will have further testing at Children's Mercy when were are released on Monday or Tuesday. He went through a list of issues and every one broke my heart a little more, first he thought he heard a heart murmur but they were having a cardiologist come and do an echocardiogram to check his heart. Then he noticed how Nick's little ears are kinda folded down like they have been smushed (well yeah they have kinda been for 9 months!) and he thought they might be at a slightly odd angle ?!? what does that mean? He had no idea if it meant anything at all. Next, he notices some of his figures had contractures, meaning they couldn't completely straighten out all the way. He also noticed that his feet and legs seemed quite purple and he felt that the echo could tell us if he was having circulatory problems. He also noticed his that his eyes seemed a little small. They were also cloudy and the left one seemed somewhat swollen on the outside. He also had a hard time opening them. And again, he didn't know what any of this could mean. I broke down after he left the room....it is so hard to not be able to hold your little baby and then be told more bad news about his condition and there is nothing I can do about it. I cried with my mom for awhile, I prayed too. I also knew that other things could be wrong, the neonatologist had only physically examined Nick. No tests had been done yet and there was potential for a lot more issues that we couldn't see.

After I cried for awhile and got some emotions out Joe and my mom helped me realize that there's nothing I can do by myself except pray and know that God is in control and that He has His hand on little Nikolas.

The cardiologist came and did the echocardiogram on little Nick's heart and she wasn't going to tell us the results! What?? Why not? Because she normally doesn't talk to the families if the test is normal! What?!? His heart is normal! Somehow Joe ran into her in the NICU and he said that I wouldn't believe it and she had to come tell me herself. I asked her if she was serious (wow, yeah I did). His heart is perfectly fine except for normal baby things that take care of themselves. My heart leaped for joy and I knew that God had done a miracle. I had seen on the ultrasounds myself before he was born that there was clearly an enlarging of his heart, plus the MRI had confirmed it as well. What a wonderful gift! I could barely contain myself! His heart was okay....praise GOD!

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

Big day tomorrow!

Wow! I can't believe it has come so fast. For awhile it seemed to lag on and on (probably because of the heat) but in reality it has gone by too quickly. I cannot believe I will meet my little boy tomorrow! I will be able to see his sweet face and (I am praying I will) be able to hold him close and tell him how much I love him for the first times.

We met with Monica, a maternity care coordinator, at SMMC on Wednesday. She went over more information with us and drew blood for the c-section tomorrow. We were also able to see the NICU, which is where Nick will be for the first hours of his life. We are praying he won't be in there long but we won't know until we figure out how stable he is. Only grandparents and siblings are able to visit Nick while he is in the NICU. Which kinda stinks for the rest of the family and friends but it's the best thing for him and the other babies that are in there as well.

His birth is scheduled for 9 a.m. tomorrow morning, unless there is an emergency that needs to be pushed in front of us. I will have to stay in recovery for about 2 hours afterwards and Nick will go straight to the NICU. Joe will stay with him and he will be able to relay information back to me until I get to be moved into the NICU with Nick.

Thank you everyone for your kind words and continued prayers. I know that God holds little Nikolas in His hands and that we need to trust Him to take care of our little boy.

Please continue to pray for Nikolas and a speedy recovery for myself.

I will try and update as soon as I am able and I will continue to update as we find out more information about baby Nick's condition.

"Be still and know that I am God." Psalm 46:10

Good news!!!

We received wonderful news from Dr. Lu today! He has no masses in his brain! I am so happy! I cried when he told me! God is amazing!

And more good news, the report noted his cleft lip but also noted that they did not see any palate involvement! Dr. Lu said it's not 100% certain but more than likely he won't have any issues with his palate! Praise God! It could mean that he could breastfeed and a lot less surgeries!

I am still in amazement right now....

The reported did note that he does still have the heart thickening but otherwise looked good. They also noted the cyst and tumors on his kidney's, but I don't think there was any change. When I see Dr. Schlichter, my ob/gyn, tomorrow, I will ask for a copy of the report so I can see for sure what it says. After he told me that he had no masses in his brain, I was so happy that I blanked out some of what he was saying :oO

All I can say is that God is good and I will continue to rejoice!