We're home!!

Nick did much better after we started giving him only Tylenol. Apparently, he is allergic to codeine! No more of that for him! His OSATs were still dropping periodically but not drastically (high 80s) and usually for no more than 15 seconds. He is eating again and is back to his old self-happy!

We're so glad to be home and we are so thankful for all the prayers! What a blessing to have such wonderful people in our lives who care so much about our little Nikolas.

Now....how to get ready for Christmas in time!

Thank you all again for your prayers!

Not so well...

We were hoping to go home yesterday but that did not happen. Nick is having trouble with his oxygen saturation. He keeps dropping, especially when I am holding him. The lowest he has gotten is 58%. Normal OSATs sats are 97-100%. At one point his lips were turning blue and he was really struggling to breath. It really scared me, I think even more because of the monitors and lots of people in the room. Laying in his bed on his side he does his best. We are not sure if they are dropping because of his nose stents or because he has inflammation in his airways from the breathing tube or if it's from his pain medicine. So today we are trying just tylenol to see how he does with that and if it makes a difference. So far he didn't drop like crazy when I was holding him and feeding him, it's only dropped slightly a couple times- so that's good. He also wasn't eating very well for awhile but now he's eating 2-3 ounces.

He's so sweet and likes to just stare into your face. He's not back to totally normal yet as he won't really smile, but I wouldn't be either with everything they've done with his lip.

I can't wait till everything is okay and we can go home, Ben and Bri hate having me/us at the hospital and always ask when we are coming home...it breaks my heart.

Please pray for Nikolas, he is strong but we cannot do anything without prayers and trusting in God to take care of him.

Doing well

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!

Thank you so much for the prayers and for continuing to pray for our sweet Nikolas!

Recovering-

Playing with daddy before surgery

Surgery tomorrow...

Well his thrush is apparently gone, even though there is still stuff that is 'caked on' his tongue, they said it is not thrush. Two doctors said that it's gone. So we scheduled surgery for tomorrow at 10:30 a.m. He has to stay at least over night, and until he is eating enough.

Hopefully, prayerfully, it won't be canceled again and we can go ahead with his first surgery. I am slightly nervous, mostly because of the unknowns. How is he going to react to everything? Is he going to recover well? How will he eat now? Thankfully, I have a wonderful husband who reminds me that I should not worry. I need to have faith that God is in control and that Nick is in His hands.

Please pray for Nick and our family tomorrow, that the surgeons will have wisdom to take care of Nick and that he will recover well and we can go home as soon as possible.

Thank you everyone for your prayers and encouragement! It means so much!

Finally getting better!

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.

Thank you for all the prayers, please continue to pray that the thrush won't come back and we can go ahead with surgery.

Day 9 of no pooping....

Ugh, this is so frustrating. They put in on diflucan and nystatin and the thrush is still not gone....Plus because he was losing weight they had me adding 1 tsp of formula to his breastmilk. Well he now hasn't pooped for 9 days, I started using the formula 8 days ago. We tried stimulating his anus with a thermometer, giving him 1/2 oz of prune juice (3x's now) and nothing is working. I am getting very agitated at his pediatrician because it seems like they aren't doing anything! Nick is not an average little boy, but they treat him just like any other child. That's good in some ways but not when it comes to his medical care. I am just so frustrated and I don't know what to do, Nick normally pooped at least once a day and now for him to go 9 days without pooping is not normal!!

I am currently waiting on a phone call from his pediatrician but I will probably end up taking him to urgent care later tonight because they probably won't want to see him and will probably just call something in.

Canceled again....

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.

Our surgeon will meet with us again in two weeks and if he is still not better we will probably completely cancel the lip adhesion surgery and just do the formal lip procedure at 6 months. I am not completely upset about canceling surgery again because I really don't want to see Nick go through any more pain than he has been, but I know it will ultimately be the best thing for him.

We also met with Dr. Artinger in genetics last week. His initial testing for Lenz micropthalmia syndrome was negative. Now they are testing for CHARGE syndrome. It's an acronym: C for coloboma of the eye, H for heart defects, A for atresia of the nasal choanea, R for retardation of growth and/or development, G for genital and/or urinary abnormalities, E for ear abnormalities and/or deafness. We should know the results in 3-5 weeks.

Regardless of everything Nick has to deal with, he is happy, he smiles a lot and sometimes makes a cooing sound. He tries to reach out and bat at toys and loves to be held and cuddled.

We meet with CCVI, the Children's Center for the Visually Impaired today, they will try and determine what his functional vision is and hopefully give us some tools to help him see and learn the best he can.

Thank you for your prayers, please continue to pray that Nick's thrush will go away and that he will start eating more and plumping up :o)

Surgery canceled...

Well we had his lip adhesion surgery scheduled for Monday morning but Nikolas has thrush in his mouth. I feel terrible. For the past couple weeks he has been more fussy in the evenings and has had a hard time eating. He also decreased the amount he would eat by about 10-20 mL per feeding. He would scream when he was eating like he was in terrible pain sometimes. We could not figure out what was going on, his therapist thought that it could possibly be reflux but he wasn't throwing up any more than he used to and did not act like he was in pain unless he was eating. Well now we know why- because his mouth has been hurting him. I thought the whitish stuff on his tongue was just milk and I thought I could wipe it off, maybe I could have a little bit but its hard to see in his mouth and he cannot open his mouth very wide either. Plus, it is only on the sides of his tongue, I just thought that it was normal because he has no palate. And he wasn't fussy for all of his feedings, mostly just the evening ones.

My sister and another friend came for a visit from Manhattan and my sister's son has had thrush three times now, so I asked her to look in his mouth and she thought it was thrush as well as our friend, who is a RN. I am just so irritated at myself that I did not figure it out sooner. It was mind boggling trying to figure out why he would cry so much when we fed him and why he wasn't eating as much anymore-why didn't I think of thrush?? I just feel so bad because he has been in pain these past couple weeks and I should have known it was thrush. And now the surgery is canceled because the surgeon does not want to risk infection, which I agree with, I definitely don't want an infection there either. I am somewhat glad we had to postpone surgery because I was getting anxious about it happening so soon but on the other hand, I know he needs it and I just hope that it doesn't push back the other surgeries too.

We had everything arranged too... we had someone watching the kids both Monday and Tuesday and everything seemed to be working out perfectly! All I can remind myself is that God does everything for a purpose. There is some reason that Nick is not supposed to have surgery Monday, whatever it is, we may never know why, but we just need to keep trusting in Him. He is in control.

Please pray that Nick's thrush will go away soon and that we can get surgery rescheduled quickly. Thanks and we love and appreciated everyone's support!

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Scheduled the first surgery...

We met with Dr. Jang today to setup Nick's lip adhesion surgery. Right now he wears tape across his lip to hold it together and the surgery will basically take the place of the tape. Wearing the tape has already made his face look different. Before the tape his profile was flat, you couldn't see his nose. But it's looking great now, his cheeks are getting quite chunky and that helps too. The surgery will be November 15 and I am not looking forward to it. Knowing the risks of surgery is scary and having him taken away for me, even if it's only a couple hours, is going to be very hard. Plus, he won't be able to eat for 4 hours before the surgery and I know that won't be fun either.

This is not his formal lip surgery, he will have that at 6 months old. This surgery will keep his cleft from becoming wider and will allow a better overall outcome when he has his formal lip repair.

We have a therapist that comes every other week to work with Nick. She helps me figure out some good exercises for him. Right now we are trying to get him to be able to lay on his stomach. His muscle tone is pretty tight so it's hard to get him to straighten his arms out but the more we work on it the better he seems to get which is reassuring. He still has to wear splints on his hands for his fingers. The contractures are still pretty tight but the splints seem to be helping.

He weighed in at 11 lbs today! He is really filling out and his legs have quite a few dimples!! All of my kiddos have been pretty chubby babies and I don't expect Nick to be any different :o) He loves to hear rattle sounds, it's the one thing that gets him to smile every time! It's very cute!

As always, thank you for the continued prayers.

Eyes

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.

Wow...I am not sure why but I took this pretty hard. I was really praying (and still am) that he would at least be able to see normally. I feel that he can see a little bit and if you are talking with him and playing with him he will smile, but I'm not sure if blind babies smile...

I really am having to just keep reminding myself that God is in control and that He gave us Nikolas for a reason, otherwise I think I would be a total mess.

Thanks for reading and for praying, it means so much.

Ears

Nick had another ABR test done on Monday to recheck his hearing and he did great! They said his right ear has pretty normal hearing, he is right on the borderline for abnormal with the high tones though. His left ear is a little worse and the test showed that he has slight hearing loss at all tones. But he still has fluid in his ears and that could cause the test to not be as accurate. He will have another ABR done while he is sedated for his lip repair. Yesterday we met with Dr. Ursick, which is his ENT. He said that he will need to have tubes put in at 6 months, and they will combine it with his formal lip procedure. There is a slight possibility that he could have issues with having the tubes in, his doctor explained that with his cleft there is a chance that his throw-up could come out of his ears and that could cause ear infections but if he didn't have the tubes it would be in his ear drum anyway so it's better that it drains if it can.

He weighs 9 lbs 11 oz! He continues to eat very well and is growing like a weed! He still sleeps A LOT but when he is awake he is looking around and squirming. He still doesn't like to be on his tummy and he has a hard time moving his arms to help him push up but we are working with a therapist through Infant Toddler Services that will hopefully be able to help him.

He doesn't sleep through the night but might sleep for 4-5 hours at a time which is really nice for me!

He has an appointment next week with the eye doctor so hopefully she will be able to tell us more about his eyes and how much he can possibly see.

Thanks for keeping us in your thoughts and prayers!

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!

Waiting for results...

Last week, we met with the neonatologist, Dr. Maria Lachica, who works for Children's Mercy but her office is at Shawnee Mission Medical Center (SMMC). She was, more or less, just explaining what will happen after his is born and that she, or one of the other neonatologists, will be present at his birth. He will be put in the SMMC NICU right after he is born to determine his stability. If he is relatively stable he will be able to stay with me at SMMC for a few days, then be transported to Children's Mercy for further testing and evaluation. If he is unstable, then he will be immediately transported to Children's Mercy. This will be very hard for me, and I am sure for Joe too, only because I know how much I will want to see and hold him and I won't be able to. I am really not sure even if he is stable if he will be allowed to be in my room with me.

We were given the choice to have the fetal MRI. It will not change what will happen after he is born but it will give us a definitive diagnosis of Tuberous Sclerosis if he does have tumors in his brain. We decided to have the MRI. I am concerned that Nick is having seizure's or infantile spasms of some sort and if it turns out he does have growths in his brain then they will assume he is having seizures and they will take him earlier than his scheduled date. And they will be able to control them better if he is born now.

So this past Friday I had the fetal MRI at our local children's hospital, Children's Mercy. They are really great there and take really good care of their patients. That is where Brianna went for her cardiac catheterization, and they were amazing.

The MRI itself was not bad, a little loud and hot, but they tell you that beforehand. What was difficult was laying on my back for an hour without moving. Being 9 1/2 months pregnant, this was very very hard, and very uncomfortable. Plus I think Nick had his little foot jammed up into my ribs which was not the greatest feeling either! But I was able to watch a movie during the scan which really helped pass the time. When it was over I was so relieved and thankful!

So the technicians told us that he would be sending the report to Dr. Lu, the perinatologist, and that we should know something by Monday, hopefully.

For now, we are waiting and praying. We have so many people praying for us, family, friends, strangers, it's amazing. We are so blessed, to have such amazing support.

The Lord has really given me some verses and thoughts that have really been really helping me.

The main verse that has really spoken to me is the first part of Psalm 46:10 "Be still and know that I am God." I repeat this verse in my head to remind myself that He is in control and that worrying and stressing over Nick's situation is not going to help anyone. I need to remember that whatever happens is part of His Will for our family and that I need to be quiet, I need to listen and I need to obey.

I was also listening to a woman talk on the radio about how fear is the opposite of love. I had heard this before but it was just now making sense to me. She spoke about how God gives us trials and if we don't allow those trials to shape us because of fear then we are not allowing God's Will to be done in our lives. God loves us and wants the best for us, and I continually need to remind myself that.

I will update if we find out the results tomorrow.

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Not so good news...

Well we had our level 2 ultrasound today at SMMC with Dr. Lu. It was such a long ultrasound, it seemed like they would never be done, it was much longer than the first level 2 ultrasound we had. Our little Nikolas seems to be pretty sick. He has bilateral solid renal masses and a small cortical cyst on his left kidney. Basically, tumors on his kidneys and a cyst on the left kidney. His heart is also enlarged because of septal wall thickening and ventricle wall thickening. It is taking up 60% of his chest cavity, were a normal babies heart would take up 50% or less. Also, one of the ventricles in his brain is dilated, which the doctor could not determine for sure why this was happening. Dr. Lu did some research with all of these symptoms and came up with a probable diagnosis of Tuberous Sclerosis. He said he is a little more than 50% sure that this is what Nick has.

Here's a definition of TSC:

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.

Latest news

Well some other issues have potentially come up as of yesterday. For probably about a month now I had been getting these feelings in my belly like the baby was possibly having seizures or just really jerky movements that were not just the normal kicking or hiccuping. For awhile it would only have maybe once or twice a day. I kept pushing it aside, hoping it was nothing. I had done a search on google to find out if any other women had felt the same thing, and if they had what the outcome was. Apparently, it is more common than I thought. There were quite a few posts about women feeling the same thing and their doctor's or midwives told them it was nothing, or it was just the baby's nervous system developing or it was just their uterus having a spasm. But yesterday I kept having the feeling, my whole stomach would shake, it happened more times than I could count. I started to get really scared and I felt like something just wasn't right. So I called my doctor and she immediately had me come in to do some monitoring. We first did another biophysical profile ultrasound and the technician wasn't able to catch any of the abnormal activity during the scan-of course! Next, we did a NST, or non-stress test, were they hook you up to a monitor that records that baby's heartbeat and contractions, if any. I am pretty sure I felt the abnormal movements during the test and nothing abnormal showed up on the monitor. Yay! My doctor couldn't really tell me for sure what it could be, but because of his cleft issues they monitor me closer. (Babies with cleft's are prone to other deformities and abnormalities.) That was a relief, or so I thought.

While the technician performed the ultrasound she noticed some swelling around baby Nick's kidney's and his heart was 30 degrees different than what it normally should be. Wow, that was hard to hear, especially because nothing ever came up on any of the other ultrasounds. She recommended that I have another level 2 ultrasound to find out more information. Really, a level 2 ultrasound is just a more extensive ultrasound. They look at things longer and closer but they are not much different than a regular ultrasound. My doctor didn't seem too worried, but she did want me to get in before the end of the week to have the ultrasound done. So my appointment for the level 2 ultrasound is tomorrow at 1 pm. She also scheduled me to have weekly ultrasounds and NST's. So now I am high-risk. Booo! lol

I have put the whole situation in God's hands. There is nothing I can do, there is no reason to worry. God is in control and I need to continue to remind myself that. Overall, I really do feel blessed, with the millions of other things that can go wrong, my baby is pretty healthy and his cleft condition is correctable with surgery. Why would I not be joyful that God has given us another little boy? He has trusted us to take care of this beautiful little boy and I am so grateful for just the opportunity.

Please pray for our little boy and that the ultrasound tomorrow will look good and that God will continue to grant myself, and Joe, peace in this situation.

32 week follow-up ultrasound

So at my 32 week appointment we did another biophysical profile ultrasound and we were able to see our little boy's face even better and really get a good look at his cleft. He wasn't trying to hide his face this time at all!

When the technician was doing the scan she said she was pretty sure she could see some palate! What! Really! That is amazing! I was really sure that he would have a complete unilateral cleft palate! Of course, there's still a chance she was mistaken but just the thought of him having some palate is amazing! I think you might actually be able to see some of the palate in one of the pictures.

Baby Nick's 1st 3D ultrasound

3D ultrasound!

I really wanted to have another 3D ultrasound done, just like I had with Brianna and Benjamin. So I scheduled to have one done at 28 weeks. We were excited to see our little boy and I really wanted to see his cleft to be able to familiarize myself with it and really see how severe it was.
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!

Meeting with the Cleft team

So the next thing we did was setup an appointment at Children's Mercy with a cleft team or some call it a craniofacial team. There were actually a couple of teams and they just randomly assigned us to one.

When I scheduled the appointment they told us we would actually meet with the whole team in one visit. The team would consist of a pediatric surgeon and his/her nurses, an orthodontist, a speech pathologist, an audiologist, an otolaryngologist, a social worker, an occupational therapist, a nutritionist, a pediatric dentist, an prosthodontist, I think that was all. . . So we were expecting a very long first visit!

We met with the team but not everyone that is going to be on his team but the main people at least. The surgeon was very nice and tried her best to explain stuff to us but without the baby actually being there it is very hard to give any type of definitive answers. . .The occupational therapist gave us some sample bottles that babies with cleft's typically use and the nutritionist explained as much as she could about issues that babies with cleft's have including the possibility that he would not be able to directly breastfeed. This is probably the hardest thing for me. I breastfed both of my other two kids almost exclusively for at least a year and now I wasn't even going to be able to? Wow, that was hard for me to accept, especially because I still want him to have breast milk and to give it to him would be a lot of work. So unless he has most or some of his palate he won't be able to directly breastfeed and I will have to continuously pump and feed him through a bottle. I am not looking forward to that! But I know it's the best thing for him so I will do it regardless.

The surgeon also explained to us that typically he will have his first surgery to repair his lip around 4 to 6 months old. They generally correct the palate around 12 months old. But depending on the severity of his lip and palate he could need other surgeries to correct his gum line and/or different parts of his palate.

Overall, I really liked the team we met with at Children's Mercy and felt like this is the best choice for our little boy. Brianna had gone through Children's Mercy for a cardiac catheterization and I was very happy with the way things went for her at the time. So our next step with them would be to make an appointment after the baby is born to get more answers and setup dates for surgeries.

Nick's anatomy scan at 18 weeks

Baby Nick's story

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.

When we went for our 18 week anatomy scan the technician was unable to see anupper lip or palate on our little boy. I was initially optimistic because I knew it could be fixed and if this baby were to have some defect this would be probably one of the best to have....that doesn't sound right now that I look back. But in reality it is treatable with surgery and depending on the severity of any palate issues he might not have any other issues at all. Joe was dismayed, he wasn't expecting this, no one was. I don't think he wanted to believe it until the level 2 ultrasound confirmed it. But when we went in for the level 2 ultrasound we were able to see Nick's face (in 2D, which makes him look like an alien) which clearly showed a large gap above his lip. Joe looked devastated. But he remained positive and we knew that God was in control. When we found out at the initial ultrasound I accepted however God made Nikolas and I did my best to give God control of the situation.

The doctor that read the level 2 ultrasound told us that my regular ob/gyn would do another ultrasound at 32 weeks to make sure my amniotic fluid levels were okay. Apparently baby's with cleft palate issues can sometimes have a hard time swallowing which would cause the fluid levels to be high and can lead to premature birth. He also gave us the number for the Cleft team at Children's Mercy Hospital.

I tried to look up information on the internet but seeing all the pictures was too hard and I haven't looked again, plus you never know what information is actually reliable.