God is in control......

Have you ever just wanted to pack up your family and just run away from life? Run away from reality? Live carefree. I have been there the past few years as I am sure many have. There are times that I think.... ‘Ok God.... I’m to my breaking point, please do not ask me to bear anymore.’ For some reason, God thinks we can handle more and.....He is right, I have never ran away in the past 40 years.  Well, besides the few times during my life when I tried running away from home at a young age. I remember walking up the long gravel driveway and hiding behind the “Neal Deaton Shop” thinking that I am teaching my parents a thing or two. About a 1/2 hour later, I would come back home and my parents acted like they didn’t even notice. They knew that I wouldn’t go too far and wouldn’t be gone long at all. 

There are times as a Mom that I have wanted to run away thinking, ‘How did I go so wrong? Is that really MY kid? My child really wouldn’t act like that or do something like that.’ I am not one of those parents though that think my kids do no wrong.... I am one that I will believe...... they probably did. 

There are times as I wife, a daughter, a sister that I have wanted to run away. I feel like the laundry is never ending, 5 loads a day is no fun. The dishwasher is running at least 3 times a day, the floors are mopped at least 1-2 times a day because there was either something spilled, some project that ended up getting more glue/paint on the floor then on the item, or there was a issue and the diaper didn’t hold it all. The grass needs to stop growing, but the grass needs to start growing in the empty spots that look like it could be a small dirt trap for boys. The house projects are never-ending... and I mean never ending. We have a few that have been 1/2 way done for a few years. Ugh....

There are times that I wanted to run away from Doctors, Nurses, PA, Specialists, Hospitals, Appts, testings. No more holding her down for Blood work, and poking for hours, no more tears as she knows something is up, no more ‘Go to sleep baby girl for the doctors and we will be there to hold you and kiss you when you wake.’ No more wondering what is around the corner, or what will the doc say next. 

God always has a way of showing us that running away from our problems, is not the answer. I will stay awake at night worrying about one thing or another...but God is always right there working it out. God tells us to put our trust in Him and Come to Him with our problems and He will help us. I need to remember that...but there are times that I still try and take care of it myself. The human nature thing is to worry until you come up with a solution.

The bible says so many things about worrying and to trust God. I try and remember a few verses that remind us: 

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you” (1 Peter 5:6-7) 

“Then Jesus said to his disciples: ‘Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?’” (Luke 12:22-26, NIV)

The past few weeks have been a little stressful. We are planning a return trip to Ohio and not having much luck with reasonable lodging, we have a few unexpected financial issues come up,  a few medical things come up, the kids have sooo checked out of school a few weeks ago and the nightly fighting to have them do homework is a struggle,  The to-do list keeps getting longer (Water in the basement is one of many... but I think that is about everyone the past few weeks), the kids locked the keys in the car (And of course the spare set as well. It doesn’t seem like a big deal... but it was just another thing to add to the list of, ‘Please God.. have something go right this week.’ ) I think when we have one of those ‘weeks’ everything seems so much worse than what it is. 

As I was loading up one of the daycare kiddos in the car to bring to preschool this week, My mind was wondering how to handle some of these issues. Khloe likes to go with me to take the kids to preschool. She had informed me that she needed to go potty, So I took her out of the car seat and had her go in to go potty. I was watching her while buckling up my daycare kiddo and it was like God made it so clear to me. I watched my little girl, who has fought to be on this earth, fought to sit-up, fought to walk, who is to be mentally challenged because of brain damage, still fighting some medical issues.... skip down the sidewalk to the house, singing, ‘Twinkle Twinkle Little Star.’ My worries left my mind as a smile came to my face... and tears followed. 

I need to remember all the ‘blessings’ God has given us and be thankful for what God has and is doing for us....instead of worry about the ‘what if’s’ and ‘How will we do this or that.’ God will take care of it all..... I trusted him and put all my faith in Him with one of my precious earthly possession..... my daughter.... and look what God did! 

Thank you God for getting my mind back on track and remembering that you are in control and if I give you all my worries... and my troubles....no matter how big and small..... you will make it all work out. 

Well, it has almost been two years since I started this blog and I feel like we are living 2010 all over again.

Khloe will be admitted to Cincinnati Children's Hospital on May 14,2012 for her 4th surgery for Complete Tracheal Rings. The surgery is to take between 8-10 hours (Depending on how bad the scar tissue is once they get in. They said it will take at least 2 hours to get her opened up and on the heart/lung bypass machine. They can then start on the airway part of the procedure.

They are hoping and praying that she will be able to go without a trach after this surgery and will be able to talk. They will come out every hour and a half to give us updates on Khloe and how surgery is going.

We will be updating caringbridge all day. The caringbridge web site is www.caringbridge.org and then type in khloesassman

My heart hurts...........

All of us at the pool!!!

After this posting.... I am going to change this web site into the family one and just keep caringbridge as Khloes medical issues. :) The caringbridge site is: www.caringbridge.org/visit/khloesassman

I am writing this with tears streaming down my face. Today everything has just hit me. I just want to take her place, I want to take this pain away from her. I want to go through all of this for her. God has a reason for everything, and right now, I just want to cry out to him and ask 'WHY?? Just show me why?!" I know there are people out there going through things worse than us and I feel for them. So, I know I should be happy with the situation I have and I am soo glad that her problem is fixable.




We met with Dr Davis today. He is from Cardiothora​cic. He explained his part of the procedure. He will be the one putting Khloe on the heart-lung bypass machine. He said he has to move her heart out of the way and help with the cutting of her chest. He explained the risks to us. He told us that if Khloe doesn't have surgery, she has a 4 out of 5 chance of dying. He said that if she does have the surgery, then there is a 1 out of 5 chance of losing her. He said that she is slowly suffocating as her wind pipe is smaller than a coffee straw. The normal size for her age is almost 3 coffee straws put together. That really put it into perspective for me. I was trying to fight back the tears when he was telling us infomation about the surgery, but I had a few tears running down my face. I quickly apologized to him and he said, "You know what?? If you didn't cry and wasn't scared... I would think you didn't understand how scary this procedure was. He said.. I know you understand.' He also told us that he has next week Wed and Thurs open and the following Wed and Thurs. So any of those days would work for him for surgery.



We then went to see Dr Smith. We had a few questions about the surgery and he was able to answer them. One of the questions was that a normal person with "C" shaped rings, has membranes on the open side that help it expand. Well, they cannot make membranes and they are closing it all back up..... so how is it going to expand with her. He explained that the part they are cutting out of her windpipe and then patching it back together with that part.... they are going to turn inside-out. He said that it will stick out more and give more flexibility. I also asked if the rings can grow together again. He said that they can on rare occasions and that she will have to be checked yearly for the rest of her life as to how it is going. They had us sign consent forms for the surgery and went through everything with us. Dr Smith said that one of the reasons he wants this done before August is.. he is leaving for 5 days and he wants it over by then. He said that Khloe will still be in the hospital but his partners will take over.



Dr Smith then asked us if we wanted to meet the other family. Lenny immediately said, "Yes, please". Dr Smith said that he asked the family last week if they would talk to us and that they have told them about us and some of Khloe's other issues and they said that they would love to talk with us. So, after everything was signed Dr Gooi took us up to PICU. We met with Brailynn's mother. (Her name is Staci also. Wow!) She then took us into the room to see Brailynn. My heart hurt when I saw her.... They say that she is doing good and that she might be able to get out of PICU this week. She tried to cry and it was so soft. I asked her mom if that was because of just getting off the vent a week ago. She said, No, her vocal cords are paralyized and that is how is cries now. She said that it happened during surgery and Dr Smith said that 70% of the time they heal. It could take 5 wks or 5 yrs but it could come out of it. Oh that poor girl. I wanted to cry for her. Staci told us many things that we didn't know and I think her insight was VERY helpful. We were in her room for an hour. I asked if I could sleep in the room with khloe when we are up there and she said 'yes, but they do not advise it. When the nurse came in, Staci told her that I wanted to stay in PICU with Khloe when she has her surgery. The nurse said, You sure can but we tell parents not to, as these machines go off all the time. The IV, the breathing machines, the drain tubes, the oxygen levels, and all the other ones. She said that no one can get a full nights sleep. (I didn't have the heart to tell them that I do not have $15 a day for the rooms that they have for parents. They also charge $15 a day for parking. So, $30 a day total for both and take that times 30 days. That is $900. My money has to go to gas/parking​/food.) I am sure it cannot be that bad to sleep in the room with her.



The nurses were real sweet up there and came in and kept talking to us and telling us things. They asked Khloe if she was gonna come be a patient of theirs.. she just smiled at them. :) It is really neat as Khloe can have visitors after the 3rd day, so her brothers, sister, nephew and cousins can come and visit. (Others can too) They told us that they give each room 2 tokens a day to be able to go into the family lounge and get a pop and chips or candy bar. Walmart sponsors that. They said that there are times that people/plac​es bring 2-3 boxes of donuts and put them in the family lounge for the parents of kiddos in the PICU. I never thought how much a box of donuts or cookies would mean to a family whose child is in PICU. It makes me think twice about how many times i have donated to the foundation at Wal-Mart and how easy it would be to bring donuts/cook​ies or anything up to a PICU anywhere.



So right now, we are waiting for a call from the schedulers as to when pre-op will be as she needs to have blood work done and everything else that goes with pre-op. They will also tell us at that time when the day of the surgery will be. She is to call us this week.



Oh, I almost forgot... Khloe went to her audiologist on Friday and her hearing did NOT get worse. It didn't get better but we are sooo happy that it didn't get worse. YEAH!!!!!! She also got a tooth on the top of her cleft. So, she has 3 teeth now. :)



When we got home from Iowa city tonight, Judy Lauterbach had brought us supper. It was so nice to not have to think about making that after a long day in Iowa City! Thank you soo much!



We know with all of the thoughts and prayers going out for Khloe, that she will be ok. God has her wrapped in His arms. It is just hard not to think of the "What If's...



Please keep passing her Caringbridg​e out, please. Pra​yer Chains, friends or anyone. We need all the prayers for her that we can get. We are soo happy that God gave her to us. She is an amazing girl and such a fighter. God could not have given us a more perfect child. God has a plan for her.. I just wish God gave us those answers right away... :) We went as a family to a family aquatics center this weekend as we promised our kids last weekend we would. There was a girl about 9 yrs old that asked about Khloe and her cleft. Instead of just staring at her like many do, this little girl, was full of questions. She looked at Lenny and said, She is such a special girl and so pretty. She is soo right. She is a special girl and her problems just show how special and how much of a fighter she is. Thank you for keeping tabs of Khloe Lane.



We have an appt with Physical Therapy Friday in DSM and then Monday she goes back to Pulmonary in Iowa city for a 2pm appt for see how the neb treatments/​inhaler and percussors cups are doing. i will update as soon as we hear from Iowa City as to when the surgery date is. They are to call this week.



Thank you for thinking of us and praying for her
 
UPDATE:: SURGERY IS JULY 21st!!!!!!

Doc appt with the ENT

Khloe getting her breathing treatment. Jared was helping her with it that night.
Khloe playing with a toy and Jaden trying to decide what kind of toy it is.
Khloe decided that mommy needed THIS purse. She loved standing in it and gummin the straps.
Lenny and Jaden when Jaden was in the hospital
My sister and I trying to entertain Jaden as he was getting fussy being in the hospital
Jaden and Khloe showing off their St Paddy's Day outfits.

Last week Khloe and Jaden came down with RSV. Little Jaden ended up in the hospital but Khloe fought her way through it and was able to stay out of the hospital. They are doing better this week.

Khloe had a a pre-op visit with her reg doc, this past Tuesday for her ABR (BEAR) test that she is to have next week Friday (March 5). Dr Frost will not sign off on it yet as she still sounds icky and doesn't want her sedated if she still sounds bad next week. She will be sedated for 2-2 1/2 hrs in the OR at Methodist. This test will tell them how her hearing is. We are so excited to get the results.

We went to her ENT doc today for a check-up. They found that Khloe has infection in her right ear. It is infected where they put the tube in at. It was so full of infection that they couldn't even see the tube today. (She has not been able to wear her hearing aids since getting her tubes in) They had us go to a different room and they strapped her down (With daddy and I having to hold her down as well) and they put a wire in her ear and cleaned it all out. It was nasty, but needed to get done. He said that the way her ear is formed inside, the drops are not making it all the way down there. That they are just healing the first part of the ear.

We have to go back next Thursday, March 4th in the afternoon as he wants to do it one more time before her ABR (BEAR) test. That way we get a good reading on her hearing. So, now all we have to worry about is her regular doc signing off on it, so we can get it done. We are praying that her lungs start sounding better. We are doing treatments every 4 hrs now instead of every 6 hrs.

We have a new prayer request. We were told today from a family here in Newton, they were told that their son, who they are pregnant with, might not make it. He has a hydrocephalus. They are to have a c-section at Mercy Monday. Please be in prayer. We know that with God all things are possible and we pray that they will have a miracle as well. They were told that he has extra fluid on the brain just like Khloe has. Pray that all things will go well! Pray for peace for the family and a miracle for baby Adam.

Also, keep in prayer Duncan, (almost 5 months old) who has had his cleft surgery and is doing good but is fighting with reflux. Also for Tirzah (1 month old) as she meets with her cleft doc for the first time on March 5th. It sounds like they are able to stay in Italy for the surgery.

We will keep ya updated on Khloe Lane and the other kiddos.

Thank you for all your guestbook signings. We read them all and it brings a lot of joy to know everyone who is out there supporting us.

I want to say THANK YOU to Jen Norvell, Mickey Van Baale and their sorority for what they have done for us! Thank you!!!

Doc appts in Iowa City

Khloe ready to go to the doc appt in Iowa City
Khloe is listening to daddy telling her a story. (Daddy needed to shave badly)
Khloe bumming on the down filled comforter and pillow
Khloe and daddy taking advantage of the pool area
Khloe in her outfit from the Breuers! Thank you Breuers!!


We have started a caring bridge for Khloe. I should have done it way back in May. Sorry. It is www.caringbridge.org and then type in khloesassman You can sign up to get e-mails when the caringbridge site is updated with news of her. Caring Bridge is so nice and we can even add pictures on it and we also enjoy reading all the guestbook when people sign it. It is such an encouragement. THANK YOU!!! Go there and check it out.

Well, we went to Iowa City Sunday night so we could get to the hospital by 8 am Monday morning. Our appt was at 9, but we had to be there early for paper work and blood work. We met the new doctor and he is WONDERFUL! We knew that God had a plan for us when we had to switch doctors and he did. Gods hand was in this the whole way. We had to meet with many different docs and nurses. One of the nurses that will be with us through the next 17 yrs, has had 2 of her own kids with cleft lip and palate. It was so neat to be able to talk with her and she showed us picture of her kids before surgery and what they look like now. She has a son who is a jr in college and a daughter that is a senior in high school.

Dr Canady asked us to explain everything that Dr Franks had told us. After we were done, he said, 'Well, every doctor does things differently and I do things different than what you have been told.' He told us that we could have a surgery done next week and they would put a tuck in her lip right under her nose. Then 6 months later they would do the rest of the surgery. (The tuck would help when they did the complete surgery, to relieve pressure off of the incision as there isn't a lot of skin there) Otherwise we could wait til she is 6 months old and he could do the surgery in 1 step. We told him that we didn't want 2 surgeries if we could help it, so we will wait til she is 6 months old. We were looking at dates and he is full for the month of April, so we picked May.

Dr Canady is doing things so differently then Dr Franks and it is for the good. Dr Franks had told us that he has kids go without bottles and binkies for 3 wks after surgery and they have to be fed by a syringe. Dr Canady said that he quit doing that years ago and allows bottles/bin

kies the day after surgery and sometimes he will allow kids to have them back hours after surgery but it depends on how they do. He said the only thing that he doesn't allow is spoon feeding for a few weeks afer surgery as that will hit the incisions. She will have to wear arm braces for 2-3 wks after surgery (aka No-No's) so she doesn't put fingers (Or in her case, the whole fist, in her mouth). He said that we could go ahead and start feeding her baby food now. We also met with Speech Pathology, Orthodontics, Pediatric Dentistry, Prosthodontics and Oral surgeon.

We started Khloe on baby food this morning and she is loving it.

Iowa City told us to call our insurance company to get pre-authorization for surgery. I did that this morning and they were trying to tell us that it is cosmetic surgery and they do not cover that. He kept arguing with me, so I asked for a supervisor. To make a long story short, they said that they will probably pay for it but they need Iowa City to fill out some paper work and then they will decide. I called Iowa City back and talked with them about this situation. They are going to fill out the paper work and told us not to worry about it as they have gone through this before and it will be covered.

We also had to call call Khloes Cardiologist as Iowa City wants written documentation that her heart doc says she is healthy enough for surgery. Dr Mooradian called me right back and said, I will get that done for you right away and said that he is anxious to see Khloe in June and see the new and improved Khloe.

Then we called Khloes Audiologist as we were to call her when Khloe had gotten tubes put in. (Yes, I'm a week behind, but today was doctor calling day. Lol) I talked with Diana and she said that she needs to call Khloes ENT and she would call me right back. When she called back she said that Dr young wants to do the BEAR test as soon as it can be scheduled. She is to call tomorrow or Thursday with a date for that. Khloe will have to go 5 hrs without eating again and she will be sudated for 2-3 hrs in the OR while they do the BEAR test (aka hearing test) We are hoping that they will wait for a week or 2 as Khloe is having a lot of discharge from her bad ear. I told Diana that I have not put the hearing aid in since her surgery as the discharge is bad. She agreed and said not to have her wear them til she sees her. Dr Canady had looked at her ears yesterday and thinks she has an infection and told us to keep using the drops til we go see her ENT. (We go there the 24th, next week Wed)

Dr Canady said that he does surgeries on Tuesdays and all the dates in April are full. So they e-mailed 'OR' and asked if they could have the 'OR' for 3-5 hrs on a Wed in April so they could squeeze Khloe in. (They said that they would call us 2 days before surgery and we would have to go right up there for pre-op and get ready) They called today and said that when all the doctors got together to talk about all the upcoming surgeries, they talked about Khloe, and they decided that they need to have the whole Cleft team there when she has her surgery and a Cardiologist on hand due to all of Khloes medical problems. The whole team and the Cardiologist can't be there on Weds, so that scratched that out. So, right now, surgery is set for May 11th. We have to be up there Monday, May 10th at 1:30 for Pre-Op. They said we should be done about 4pm. Then we will need to be back at the hospital at 6am the next day for surgery. They only allow 1 parent to stay in the hospital room over night. Lenny said that he will just get a hotel room for that night for himself. We have to have one for the night before anyway as coming home and then turning around early the next day would not be fun.

I have to tell you about God and how he works, even in the small parts of our life! Lenny and I have been sleeping on an air mattress for the past 3 wks. With the runing around with the pregnancy of Khloe and then how busy we were after her birth, Lenny never had the time to get up on the roof to clean out the gutters. Needless to say, with all the snow/rain, the gutters plugged up and ran right into the basement into our room. Our nice plush carpet was ruined! Lenny has taken all the wet carpet out and threw away but we still have some to tear out. Under the carpet is cement floor. BRR!!! So until we can get new carpet and get the whole room clean of that icky smell, we cannot stay down there. We are waiting on income tax to come back to help us out. Well, anyway, Lenny decided we should go to Iowa City on Sunday night so we wouldn't have to get up so early and maybe sleep in an actual bed. :) We found a Sheraton hotel down from the hospital. Lenny went in and asked how much the room was. They told him $130 a night. (I know that doesn't sound like much, but right now, it is a lot for us. ) Lenny said, Well, I was hoping not to spend that much, so thank you but no thanks. The clerk said, Sir, I have a suite that I can give you for $69. Lenny turned around and said, We will take it! You should have seen the room. We were on the 8th floor with a california king bed with down filled comforter and tons of pillows and a huge 32" screen tv. (I don't think we ever turned it onthough) It had a huge bathroom that was gorgeous! The view out the window was great and we took a nice but cold walk outside to see all that they had. Do you know how nice it was to sleep on a bed that night!!! It was AMAZING!!! God was with us and helped us get a great room and helped us with the price. The Sheraton also told us that they will give anyone $30 off a room each night when we have to go back for surgery. We just have to show them a paper saying that we are in Iowa City for that. Lenny went ahead and made reservations for May 10 for him, Khloe and I; and then for him for May 11th. We even got to go swimming and go in the hot tub for a while. It was nice!

I will post again once we get a date set for the BEAR test and afer we go to the ENT.

God has blessed us with a wonderful doctor. We really liked Dr Franks, but God knew what he was doing when he gave us Dr Canady. We will miss going to Mercy as it is soo much smaller and we could go see some of our favorite nurses, but we will still be there every so often and will hopefully go see them.

Thank you ALL for your words of encouragement and for signing the guest book. It is soo nice to know that you are all going through this journey with us. We are not alone and you are all there with us. THANK YOU!!!!! We LOVE hearing from you all and enjoy any input.

I want to also say thank you to Duncan's mommy. Duncan is 5 days older than Khloe and he just had his cleft lip surgery 3 wks ago. They live in a different state but it is so nice to exchange words with her and see what Duncan is going through and it gives us peace. Duncan is a sweet little boy and he looks GREAT!!!

We are still praying for Tirzah, our cousins daughter. They are in Italy and Tirzah has a small cleft lip. They are to meet with surgeons soon. Please keep them in your prayers.

Well.... change in plans. But EVERYTHING HAPPENS FOR A REASON!

We got a letter in the mail last week Tuesday stating that Dr Franks (Khloe's cleft lip/palate doc) has decided to close his practice as of Feb 21. I called them Wed morning to see what we needed to do. We had her surgery set for Thursday, March 18th. Mary Jo, Dr Franks nurse, said that there is only 1 other doc in Iowa that does this kind of surgery, Dr Canady, and he is in Iowa City. She said that her and Dr Franks will be having a conference call with the doctor during the week and will get things all set up for us. She said that they are doing everything by priority but that she would call us the week of Feb 1 and let us know what is going on. They called this morning and said that we have an appointment in Iowa City, Monday, Feb 15th at 9am. Mary Jo said that she is close to the top because of her age. They do not want us to introduce foods before surgery as she will need to go without foods/bottle for 2 weeks after surgery. So they want to get going on surgery before she gets too much older.

Dr Young's office, ENT, called last week Wed and said that since we cannot do both surgeries at the same time anymore, that they would like to do their surgery on Feb 8th at Mercy. They will put tubes in and see if they can repair anything that is damaged and causing her hearing loss. We have to be at Mercy at 6am on Monday. We are anxious to see if they can help her hearing at all.

She had her follow-up appointment with her heart doc last week Friday. They did an EKG and chest x-rays which is the normal routine. The doc came in and said that he needed to do an ultrasound on her heart right away as the x-rays show an enlarged heart. We took her right into the ultrasound room. Thee doc came back in later and said that her thymus is enlarged and not her heart. The thymus is a gland that is in front of the heart,he said. He asked us to tell her doc when we go see him on Monday. We went to see Dr Frost on Monday for her 4 month well-child check-up and a pre-op. We told him about it and he did blood work and chest x-ray to see what, if anything, was going on. They called today and said all is fine. Yeah!

Khloe also went for a check-up at Methodist for her hearing aids on Friday. She got a newer upgraded hearing aid that just came in. They were talking to us about the BEAR test that will need to be repeated soon but will wait til at least after her tubes are in and maybe wait til after her cleft is repaired. They said that they used to put some meds in the babies bottles to have them go to sleep. Well, the new anesthesiologist that just started, will not do it that way as he has not worked with it before and doesn't feel comfortable. So they were telling us that Khloe will be put under regular anesthetic during her BEAR testing this time. Lenny was a bit worried about her going under for her ears, then for the BEAR test and then for her lip. That will be all in a 1-2 month period.

We got a letter in the mail today from "Job's Daughter Hike' AKA 'The HIKE Fund, Inc'. They held a fundraiser in Khloes name and they said they had raised enough money to pay for Khloes hearing aids. PTL!!!!! They want to have a presentation for us to receive the check which will go right to Blank Childrens Hospital. They asked us if they could have media and newspaper there for the event. We are not sure on the date yet. We are so thankful for this organization! They will pay for future molds for her ears, check-ups and any other items that are needed for her hearing aids, as well. We were shocked to hear that they held a fundraiser in her name. God is GOOD!!

We will update on Monday again after surgery to let you know if they could help her with her hearing. Lenny or I will be updating Facebook and Twitter (Sassmangang)during surgery. Please pray that they will be able to help her, if even just a little bit with her hearing.

To let everyone know, our Cousin, had their little girl, Tirzah last week. She is amazing! Her cleft lip is only on one side and it doesn't even affect her nose. It goes about 1/2 way up on the one side. I do not think it even affected her gums. She DOES NOT have a cleft palate. She is beautiful!!!! My understanding is that they will come back to the states for her surgery, but possibly only 1 surgery for her. Yet another miracle!!

We will post more on Monday!!!! Thank you!!!!!!

Surgery is set!

That was our car, the blue one.

That was our tire.

Khloe and her dolly she got for Christmas.

Khloe in her Christmas dress.

Khloe saying "Hello!"

Jaden and Khloe swimming for the first time!

This is an up-close pic of Khloes lip. This is where they need to do repair on the palate. You can also see her gum and how it is twisted.

Khloe and Daddy bumming!

Khloe with the tape on her face. She just hates it!

We had doc appointments with Dr Franks and also Dr Young on Jan 8th. We also had a check-up to see how her developmental state is coming along on Jan 14th.

Dr Franks has now decided to have her lip taped until surgery. Her lip/gums are starting to turn outwards and it needs to be turned inward to have a successful surgery. So, she has to have tegaderm strips on both cheeks and then have steri-strips go from one of her cheeks, over her lip/gums and then to the other cheek. It is supposed to be pretty snug so there is pressure on it. We are supposed to do this daily. We have missed a few days as her lip has turned red and started to bleed as it took some skin off. We tried putting some aquafore on her lip before we put the steri-strip on, but then it slips off and goes into her mouth. We hate doing it to her, but know it is for the best. We are not sure what else to use to help with the tearing of the skin on her lips and gums. Dr Franks said that she will have her lip taped after surgery for a few weeks and also have restraints on her arms so her hands cannot reach her face. She is going to hate that as her hands are ALWAYS in her mouth! A week after her surgery, she will have to go back into the surgery room to get her stitches removed. I am not sure why she has to go back into the surgery room for that, but that is what they are saying. She has to be fed by a syringe for 2-3 weeks as she cannot suck on anything during that time as it will ruin what the surgery did. We are praying that she will not be too grumpy. They said it is a trying time for parents.

We asked Dr Franks if this would be her only surgery til she is 2. He said, he cannot answer that until he gets her into surgery. He needs to repair her lip and also her gum/small cleft palate. He said that if the incisions will be on top of each other, then he will have to do 2 surgeries. If that is the case, then he will just do the lip this time and then later this year do her gums/small cleft palate. If it is only her lip, we will only be in the hospital for 1 day. If they can do it all, then it will be a 2-4 day stay. Her other surgeries will be at age 2 or 3, then 8 or 9 and then the last one at age 17. The one at age 2-3 will be when they take some of her hip bone to build up gums.

Dr Franks scheduled surgery for March 18th. We will go back to him March 5th for the last appointment before surgery and find out what time the surgery will be.

Dr Young did a CT scan on her and found a lot of fluid behind one of her ears. That is one reason he is putting tubes in. He says that it might help her hearing a little and might not be has hard of hearing as what he was thinking. We asked if it meant that she would have 100% hearing back, and he said, no, as she has damage done to her hearing, but it might not be as bad. She did so good during the CT scan. They didn't have to put her out. She laid so still. I was able to stay in the room with her and she just laid there and looked at me. She was so good!!! I was praying the whole time!

We also went to see how her developmental state is doing. They say that she is behind some. She should be able to grab for things and hold her head up during tummy time. She cannot do that. They are saying this is from her encephlocele. Her muscles on her neck are very tight and they are thinking it has to do with the cutting that they did into her muscles during brain surgery. We are massaging it daily. She cries and cries when you make her turn her head one way or another. She likes to look forward and also sleeps with her head looking straight forward. She never sleeps with her head to the side as her muscles will not allow her too. I am sure her muscles will loosen in time with the exercises we are doing with her. Her coordination will come in time if we work with her and re-train her brain. If God has other plans for her, that is just fine!

We go this week Friday, Jan 29th, to her heart doc to see how everything is going. She will have another EKG and x-rays.

While we were at Mercy last week, we were able to stop in and see Jan from NICU. She is so amazing and remembered Miss Khloe. It was so nice to catch up with her. We tried to go to Andrea in Labor and Delivery but she was off already. Hopefully when Khloe has her surgery, we can catch up with her. Those 2 are wonderful at what they do and made such a difference in our lives!!! We love them!!

We also went to see Kate from Dr Mandsager's Office. She had asked me when I was at my 6 wk appointment, for us to stop in with Khloe when we were at her next doc appointment. So after Dr Franks appointment on Jan 8th, we went in and saw her. The Ultrasound tech that found all of Khloe's problems came out as well and wanted to see our miracle. She said that she hopes someday to be able to be Khloe's Ultrasound tech as well. We had such a wonderful support team before/during and after Khloe's delivery! We were and are blessed!!

We took all the kids and Khloe and Grandson Jaden for their first swim this weekend. They had fun but the water was a little colder than what they are use to for bath water. So they didn't last too long.

We are asking for prayer for Khloe during her surgery and we will keep this web site updated all day the day of her surgery. We are excited to show before and after pics. She will be red and sore for a while after surgery. We also ask for prayer for one of our cousins this week. She is having a c-section in Italy (They are stationed there) on Tuesday, Jan 26th. She is having a little girl, Tirzah, and they have found out that she also has a cleft lip. It sounds like it is a uni-cleft. They are also saying she might have a cleft palate as well. We are also asking for prayer for our friend who is 27 weeks along and who is on bed rest. Jan 26th will also be the 5 yr anniversary date that my 4 oldest kids lost their daddy. Please pray for them!

Just a few things that are going on in our household...Lenny hit a deer with his Grand Am in Nov and then 2 wks later (While we were waiting for the auto body to have time to fix it) a teenage hit and totalled Lenny's car when it was parked in front of our house. Then a few weeks later my dishwasher, 2 yrs old, died. It died the same night a car accident happened by our house and it tore the electric and phone lines off our house. It happened when it was just Khloe and I here and it was dark. It was scary listening to these people trying to run away from the accident and throwing people in another car to run and leave the scene. Then a few weeks later my daughters car, which Lenny had been driving as we had not gotten him another car yet, died. Then a few weeks later my fridge which is 2 yrs old died. We have had a trying few months. So because of the 2 accidents and then my daughters accident a year ago, State Farm sent us a nice letter telling us that they will be dropping us with house and car insurance. Grrrr!! We have found a new insurance compnay now, Farm Bureau! THANK YOU to them!! We need to buy 2 cars and have bought a fridge and dishwasher. When it rains, it pours. Oh well! We have 6 healthy kids and a healthy grandson. God has given us soo much and he continues to help us through!

Thank you for all your concerns and prayers. God is a great God! He has given us a miracle and I know he will be there for us through all things! THANK YOU!!!!

We also have joined Twitter (Not sure what I am doing yet on it. Ha) and we will keep it updated during her surgery if you would like to follow us on that.(Sassmangang). We are also on Facebook under 'Staci Vanderhart Arnett Sassman.' You can follow us on any of them. This web site will be updated as well during that day.

Hearing aids and other updates

Her hearing aid

She's smiling! She must like 'Iowa State'

Merry Christmas!!!!

Her and her bumbo!

Here is a fast update. I will update more once we get the surgery date and once we have gotten home from the doc on Jan 8th.

She got her hearing aid in November and she is doing great! She got these huge wide eyes when they put them on her. IT was like, "Whoa, I can hear you mommy.'

Jan 7th, we go to see how her development stage is, compared to what it is supposed to be at this age. They are wanting to see how and if her encephlocele affected her brain. Then on Jan 8th, we have 2 doc appts. One with the cranialfacial doc and the other one with the ENT. They will tell us on Jan 8th as to when her surgery date is for her 1st of many surgeries for her cleft lip and partial palate is. The surgery for the cleft is to take 4-5 hrs but the ENT has decided to join Dr Franks in the surgery room and put tubes in and do a few other things after they are done with her lip. So, we are not sure how long the surgery will actually take. She will have to be in the hospital for 2-4 days after surgery. She will be fed by a syringe for 3 wks and will also have to wear arm braces because they do not want her hands to touch her face. (That is going to be a problem as she has had her hands on her face since, well, it was that way in every ultrasound and still is that way!)The reason she has to be fed by a syringe for 3 wks is because they do not want her to suck on anything for 3 wks as it could ruin everything the surgery did. They said it is a very trying 3 wks for parents. We are sure it will ALL be worth it though. Her surgery will be at Mercy. They want Khloe to be 4 months old before they do the surgery so we are thinking it will be middle to end of Feb.

She goes back to her heart doc on Jan 29th. They will do another EKG and another ultrasound to see how everything is going.

A few wks after her lip surgery, Khloe will have another BEAR test at Methodist for her hearing. They will sedate her for 2 hours and check her hearing to see if it got worse or better. They have asked us to learn some sign language and we have been learning some.

We are so used to her cleft lp and palate that we do not even think about it until we are in public and we get stares or hear people talk about it. The young kids are so cute as they will ask 'Why does she have an ouchie?" When we explain, they are always so sweet. They usually say something like, 'that is so sad' or ' Does it hurt her?" They are so sweet. Older people on the other hand are a little rude at times. But we do not care. We ARE NOT ashamed of her and carry her around proudly. She is an angel.

We want to thank everyone for all their prayers, cards, gifts, e-mails and posts that past 7 months. God heard ALL of your prayers. He gave us a true miracle!!!! THANK YOU!!! We know some of you are pregnant now and we pray for a healthy pregnancy and delivery. Others of you are going through rough times or have had losses. We PRAY FOR YOU ALL!!!!! We want to thank you for everything! You were and still are a blessing to us! It is your prayers that God heard as well as ours. You all have walked this journey with us and we thank you! We have some hills ahead of us, but God is with us and we have all you to support us in prayers, letters of encouragement and many other ways. THANK YOU!!!!!

We will FOR SURE post pics of her while she is in the hospital. They said she will be red for months after surgery but that we wll be amazing at the change. We are excited but yet, we will miss her cleft as it is a part of her.

Update - 11-12-2009

Khloe has been very busy with Doc appts. In the past month, we have gone to her heart doctor, doc for cleft lip, Pediatric ENT for airway and hearing, regular doc and a 2 1/2 hr test at Methodist for her hearing.

She still has her heart problem but they honestly think she will grow out of it. We will go back every 3 months for rechecks. So, in Jan we will go back.

Dr Franks, her doc for her lip, has decided he wants her to get a little bigger before he does surgery. So, we go back Jan 8th to set up surgery. Surgery will be either the end of Jan or first of Feb. He told us that since her cleft is not on the soft palate but only a little one her hard palate that she will only have to have 4 surgeries in her life for that instead of 5. PTL! We will take one less surgery.

We have not gone back to the neurosurgeon yet. Our appt for that is Dec 1st. We are anxious to talk with him.

We went to the Pediatric ENT for her airway and her hearing as she failed her hearing test on her right ear. They scoped her while we were there. They allowed us to stay in the room and watch it on the screen. Her airway is good! They also rechecked her hearing and she again failed her hearing in the right ear. They referred us to Methodist for more extensive testing. We went there last week for a 2 1/2 hr test. She had to sleep through the whole thing and they wanted to try it without sedating her first. She did great! She sleep the whole time with only a few cries here and there. We had to sleep deprive her and not feed her for the day until we got there. (The test wasn't until noon, so she went a while without eating.) She was so exhausted from fussing that she fell right to sleep after her bottle. The audiologist came in and said that there was hearing loss but that she would call us on Monday to talk to us about everything. Well, she called on Monday and told us about the right ear and then called Tuesday and told us about the left ear. She does have moderate hearing loss in her right ear and a little hearing loss in her left.

We had to meet with the pediatric ENT yesterday again and he said that the right ear is in need of a hearing aid right away. The left ear they are going to leave alone right now and recheck it again in 3-5 months by doing the 2 1/2 hr test again. He said that because of her age at that time they will sedate her when they do the recheck. They are setting up a time for next week to get a hearing aid. They said that they will cost $1800 a ear. I guess they think that is cheap as they said adults can be $5000 a ear. She will have to go back every 3 months for new core for her ears until she reaches a certain age and then it will go to every 6 months. It will cost $70 each time we need to get a new core.

They told us to call our insurance to see if they will pay for it. Well, according to our insurance, it is an elective for a child to hear and they will not pay for it. Gee, I am saying, "You have got to be kidding!" So, by next week, we have to pay $1800 plus the $70 for a core but insurance will not help. Not sure where it is going to come from yet, but oh well. God has provided for us always. He will again.

When I was first told that our daughter had to have hearing aids I cried. I was soo upset. I thought she a cleft lip and now hearing aids. I do not want her made fun of. But then my husband put me back into perspective. He said, "Two months ago we were afraid that she wasn't going to make it. If they were to tell us this then, we would have been so excited that this is all she has wrong." He is right! God has given us so much! What was I thinking being upset!?! We go back in Jan to the ENT but to Methodist next week to get fitted for hearing aids. Khloe's social life with doctors is slowing down a bit. It isn't weekly now, just monthly. Lol

God has been with us through this all. He will continue! He is an amazing God. Since Khloe has been born, I have heard so many people with problems and children with problems. We are praying for ALL of them. Khloe is proof that God can work miracles and He continues to work miracles daily. Please pray with us as the bills are starting to come in and they are overwhelming. We have already told our kids that Christmas will be hard to do this year. They totally understand.

Thank you ALL for all your gifts, prayers, e-mails and comments. I am continuing to print out all e-mails and comments and putting them in her book. THANK YOU!!!!!!!!!

She is here!!!!!

I am sorry for it taking so long to write this. I couldn't get my computer to work at the hospital and then the computers that they have for NICU parents were always busy. I have tried writing it twice since I have been home and someone always closes it on me while I am away from the computer. I am sorry!!!!

Khloe Lane Sassman entered the world Oct 7th at 9:20 am. 6 lbs 10 oz and 19 inches long. The night before I was so nervous. I sat on the couch most of that night just feeling her kick and hiccup. I wasn't sure if that was going to be the last time I felt her or not. I enjoyed every movement.

We had to be at the hospital by 7am and the c-section was scheduled for 9 am. God gave us an amazing nurse, Andrea, to be with us. Just before they took me back to do the c-section, I started crying a bit. I was nervous as I had never had one of these but mostly because I was scared as to if my baby girl was going to make it. Andrea, our nurse, came into the room and said,' I'm praying for ya!'. She is such an amazing person. She was getting ready to take me to the room where they do the c-section when Dr Mandsager's nurse,Kate, came into the room. We had asked Kate if she was going to be there for the delivery and she said that she usually doesn't but she will see what she could do. Well, there she was. She gave me a hug before we went in and said,"I'm here for ya. Its gonna be ok."

I got back into the room and got all ready for it and Andrea never left my side until Lenny came in to be with me. I had asked one of the nurses if they would let me know if she didn't make it. They said, 'Yes, we will tell you. You will be the first to know." I had told Andrea and Lenny that if I hear my baby girl cry, then I knew all was going to be ok. Well, needless to say, she came out screaming! I was so overjoyed! PTL!!! I didn't get to see her right away as they took her right across the hall. A few minutes later, Andrea told Lenny that he could go across the hall and see Khloe. Andrea came and sat by me then and said,"She looks good and is doing good. I looked this condition up on the internet before we came in and her bubble isn't bad at all. ". Lenny came back a few minutes later with Khloe in his arms. That was the best sight. I tried looking her all over but that was hard. All I got to see was her lip. They had her bubble and the rest of her all covered. I got to see her for a bit before Lenny and the NICU nurses took her up to NICU. Andrea came and sat with me while Lenny went up to NICU with Khloe. I want to say a HUGE thank you to Andrea and for all she did. She even came up to NICU the next week to check on Khloe. She is an amazing nurse and God hand picked you for us that day! THANK YOU!!

After I got out of recovery they took me up to NICU to see Khloe. I got to hold her for a little bit and at least count her fingers and talk to her and love her. I was scared this day would never come.

The next day, Thurs, Oct 8th, she was scheduled for brain surgery at 8:30. Just before she was to go down for the surgery they thought they heard something wrong with her heart. They did an ultrasound of it and found that she has a pin-sized hole in one of her ventricles. They are hoping that it will close in time, but will keep an eye on it. They had to push her surgery back til 1pm because of the time it took to check out her heart. Her brain surgery took 2 1/2 hrs.When they were done, they came out and told Lenny that the part of the brain that was in the bubble had detached from the rest already. They said that they thought it was the coordination part of the brain. They said that they have done many surgeries on adults after car accidents and they have taken that part out but with physical therapy they can re-train the brain and are perfectly normal.

She came out of brain surgery on the vent but said that the next day they would take her off. Lenny, Alyssa, Lenny's mom and I were in the room while they took her off the vent. She would stop breathing and then start again. The had to bag her 2 times. The 3rd time is the time I will never forget. She turned purple in the face, was laying still and had her eyes open. I honestly thought I had lost my little girl and that she had gone to see her Heavenly Father. Doctors and more nurses came in and told us to leave the room. They came out and told us that they had to put her back on the vent. We were heartbroken and scared. We didn't understand why.

Needless to say we didn't get to hold her after her brain surgery on Thursday. It wasn't until Sunday that we got to hold her again. They started feeding her 1 tsp every 3 hrs in her feeding tube on Saturday. They had her up to 3 tsp by Sunday. On Monday they decided to try and take her off the vent again. Lenny and I stayed in the room and we just held each others hands praying that this time it would be ok. They took her off the vent and put her right on a machine called Vapor Therm. She did great! She was able to get off the Vapor Therm machine by Tuesday. The only thing left was to get her off the IV. On Tuesday they introduced her to a regular bottle. She wasn't able to suck on it, so they had us try a special bottle just for cleft. She did great and by Thursday was up to 2 ozs. She has to drink sitting almost upright and then leaning to the right. You have to squeeze the bottle for her. It took some learning but we are becoming pros now. :)

On Friday they took her off the IV and did a hearing test. She failed her hearing test in one ear. That is ok though. By 11am on Friday they said that we could take her home. She had lost quite a bit of weight but that was because she had not ate the first 3 days she was born and then only had a little bit the next few days. Needless to say, her newborn clothes are to big for her. :) I was so excited to finally take her home. For the past 5 months they had told us that we shouldn't buy anything for her. We had bought some clothes but didn't buy anything else. So, when they sent her home with us Friday I didn't have a bassinet, diapers, wet ones or anything else that I needed. NICU sent us home with enough to get us by for a few days. So, needless to say, Lenny and I to go shopping on Saturday and get her some things. We do not have everything yet, as we just got what we needed, but we will slowly be getting her stuff now. :) I had waited for 5 months to go shopping for her. I was soo excited to get the news!!!!!

The biopsy results came back before we left the hospital showing that there was NO brain tissue on the bubble. It was only skin fragments! PTL!!!Dr Mandsager said to us, "I am shocked! We have ultrasound pictures and test results showing that she honestly had all these problems. I don't know what to say or how to explain.' Well, we do! God is great! He performed a miracle on our daughter!!!

God didn't give us this mountain to climb like we were told we were. He just gave us these small hills to get over. We areso excited for this adventure. Khloe has a busy social life when it comes to doctors. We have an appt with an ENT next week for her small airway (They found that out during brain surgery) and for her hearing. We have an appt next week with the cardiologist for her heart and with Dr Franks for her lip. We also have an appt coming up with her neurosurgeon as well. Then of course with her regular doctors. They also have her signed up with 'Early access'.(They will watch her development. ) We couldn't ask for better nurses. Andrea was amazing and then Khloes' NICU nurses were great. Jan was one of her nurses that was with us from the delivery room up to the day she got out. She was great!

I want to thank ALL OF YOU for all your prayers that went up through these last 5 months and especially the day she was born. It was all YOUR prayers that got us through. God heard all of those prayers and gave me a beautiful baby girl! I just sit there and hold her and tear up. It is amazing to hold a miracle in your hands! THANK YOU!

She is to have her first surgery in Dec or Jan for her cleft. She will be in the hospital for 2-4 days after surgery. We will keep you all posted on her doc appts and her surgeries. I will post pictures of her as well. You can also go to www.mercydesmoines.org and go under Oct 7th and then to Staci S to see her hospital pics. I think they are amazing pics! They took them the day she got out.

I want to thank you again for bring patient with me posting and also thank you for praying for her! She is OUR MIRACLE! It shows that God is an amazing God!~~~~~~~

August 28th and Sept 11th Doc Appt

We had a doc appt Aug 28th and then again Sept 11th. At the appt on the 28th, they decided on a c-section date. They planned it for Friday, Oct 9th. They called back though on the 31st to tell us that the neurosurgeon would like to have it done on Oct 7th instead. He would like to do brain sugery on the 9th, early in the morning, before the weekend. He also said that if the skin, covering the bubble, is very thin, she will have to go in surgery right away and he doesn't want to do an emergency surgery on a Friday afternoon. So, as it is planned right now, she will be born at 9am on Oct 7th.At the Sept 11th appt, they did an ultrasound and she weighs 5.7 lbs. (She gained over 2 lbs in a month) Her bubble has NOT grown since they did the ultrasound a month ago. PTL!!!! She has flipped though. She has been head down this whole pregnancy and she is now head up and feet down. Doc Wang (Dr Mandsager's partner) said that even if she was a normal little girl, we would be doing a c-section as he cannot see her moving her body around again since she is that big already. It was so cute to watch her on the ultrasound this month. She kept making faces and scrunching up her whole face. They didn't get good ultrasound pics this time as she would make the faces and then turn her head away. Then turn it back, make a face and turn away again. After the appointment, they sent us over to tour NICU at Mercy. They have really changed that since my sisters kids were in there. It is beautiful!! Every baby has their own private room now and parents get to stay in NICU 24/7 with their baby. I was teary-eyed through the whole thing. A head nurse came to get us and said that she was expecting us. Another nurse came over and said, "Oh, are these possible NICU parents?" The head nurse said, 'Oh, no, they are for sure NICU parents. This baby has a lot going on with her." I knew that we would always be NICU parents since we heard the news but hearing them say it, was hard. She explained to us what all would happen that day. She said that they would take her away as soon as she is born and rush her up to NICU. Daddy is able to follow and go with. She explained that all the specialty docs would start dealing with her up in NICU. (Her brain surgeon doc and the doc for the cleft palate/lip) They said that they would wrap her head first and then start an IV, Pik-line (I probably spelled that wrong), put her on oxygen, and a feeding tube. She will be hooked up to many monitors. They said that she will more than likely have to have a blood transfusion with her brain surgery. She said that Daddy can stay in with her for most except for the pik-line and anything else that might come up. They said that they will check her over and see what else, if anything, is wrong with her. She will get a ct scan right away to see how much extra fluid she has on the brain. I guess she has to much on 2 places of the brain now. They have strict guidelines in NICU. In Oct, they shut down NICU for anyone 14 and younger. (4 of my kids fall in that catagory and are struggling knowing that they cannot come in to see her as it goes for siblings too) Anyone over 14 has to have a flu shot to come into NICU. They only allow 1 person at a time in there with one of the baby's parents. The paternal/maternal grandparents can go in but they are not allowed to bring anyone in with them. We know that these rules are for the best of all the babies. It will be hard on our 4 young kids but it is best for all babies in NICU. The head nurse said that they might be able to bring her to the window later on during her stay to see her siblings. The kids have actually started praying that God will allow her to come the end of Sept so they can come in and see her. They have it so that mom's can monitor their baby from their hospital room or even from their own house. It is kindda like a web cam. That is soo neat!!! God has brought us this far and I know he will bring us and her through this. He is a GREAT God and has so much good in store yet for all of us. We are so excited to see what is ahead. She is in God's hands and there is no better place for her. He will guide and protect her and will help us make the right decisions through this all. Matthew 11:28 - Come to me, all you are weary and burdened, and I will give you rest. Isaiah 41:10 - So do not fear for I am with you. Do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand. Our next appt is Sept 25th. My understanding is it will just be a short regular doc appt and we will not find anything new out that day. I am assuming that we will not hear any more til she arrives! Please be in prayer for our daughter and our whole familiy on Oct 7th. Our family will be updating and be putting pictures on as soon as she is born. We are excited to share the news with you and will as soon as she is here. Thank you for praying with us throughout these past 4 months. God is a Great God!!!

Aug 13 Doc appt and Aug 18th Neurosurgeon Appt

This is a pic of her bubble. They did a 3D pic of it. We have never gotten such a good pic of her bubble.
We just love this pic. She has her foot under her chin. 'Look Dad and Mom, this is my new trick!"

We had a doc appt last week Thursday. They did an ultrasound and they got a really good 3D pic of her bubble on the back of her head. They also got a good pic of her cleft lip. It was so cute, she had her foot all the way up to her chin. We were laughing as she had her hand there and she was moving like crazy and we were able to see her move her foot up to her chin. It was like "Look Mom and Dad, See my new trick?" :)

Her bubble has NOT grown between these last 2 appts. (We go every 2 wks now) PTL!!! She weighs about 3 lbs now. They also said that this could affect her vision and could be blind. The ultrasound tech told us that she has a patient right now that is in her 20's who was born with the same problem that our little girl has. She said that she is healthy and pregnant with her first child. She said,' I just want you to know that yes, it could end bad, but that there are some who make it!'

We had our appt with the neurosurgeon on Aug 18th. We were very anxious to go. When we got into the room and the nurse proceeded to tell us that the doc office forgot to send pics over. All the doc sent over was where it was located, how big the bubble was, and that she is growing normal and her amnio showed she had nothing else wrong but the 2 problems. Lenny and I just looked at each other. We thought, Great, we have waited exactly 3 months to talk to this doc and now he cannot even tell us anything because all the info wasn't sent over.

Dr Baig came in and was talking to us about baby girls problems. He said, 'It is ok, I do not need an image to tell you that, this bubble is NOT going to kill her. Yes, it has brain tissue in it and yes, it has brain fluid in it, but it isn't that big.' He told us that he will more than likely have to put a tube in her brain down to her stomach to drain the extra fluid that she has in one part of her brain that keeps building up. He also said, 'I cannot tell you 100% that she is going to make it as after her brain surgery she could get infection or bleeding, but I am tell you that anyone who has brain surgery runs that risk.' He told us that 'yes, she might be mentally challenged and slow at things, but we will not know how bad til later in life.' He said that he wants to wait til she is a few days old to do brain surgery as it is very traumatic on a baby to be born and to be rushed right into brain surgery would not be good. He said the ONLY way he would do surgery right away is if the skin on her bubble is to thin and it might break. During surgery they will take what is in her bubble and put back in her head. They might also put that tube in from her brain to her tummy if he thinks that is necessary. They will have to close up her skull as it has an opening right now that goes into the bubble as well. So they have to reconstruct that part of her skull. I am not sure what they use to close it up. The doc for the cleft lip/palate told us that they use bone from her hip for the mouth surgery, but this doc didn't tell us where they take it from to fix the skull. Oh well. He repeated a few times about her probably being mentally challenged. Lenny looked at the doc and said, "Doc we DO NOT care, we are ready for whatever God gives us. We are just so excited right now that we will be able to take care of her if shes mentally challenged or not.'

After 3 months of bad news, we got some REALLY good news. I asked if we could start getting a few things for her and he said, 'Sure, I don't see why not.' YES!!! I have been waiting for 3 months to hear those words. Lenny said that he doesn't want us to go crazy yet as she will be in the hospital for a while and we will have plenty of time to get everything then. So, I am ready to buy just the essentials. But VERY excited to even buy that!!!! She will be able to wear her own clothes in the hospital, so I'm excited to get a few items for that.

God is SOOO good! He has allowed the bubble NOT to grow much. He gave us one of the best Doctors! He gave us many miracles already and we know he will be beside every step of the way!

They are wanting to try and get us to Oct 7th or 8th and then do a c-section. They said that that is the goal unless baby girl has other plans of trying to come early that we do not know about yet. :) I am not due til Oct 15th so Oct 7th or 8th is right on track.

God is working in our lives and in her life. He is showing us that He can do great things! We just need to trust Him! We want to Thank you ALL for praying for us! Please continue to pray for us/her for complete healing IF that is God's will. We are so excited! God is a Great God!!

I am sorry it took so long for us to write this. We started school this week and had orientation for Kindergarten and then open house for the other 2. I started homeschooling my oldest 2 this week and we also started Football. Then the regular black belt and swim lessons and then daycare during the day. We are also getting ready for a garage sale this week and I have been trying to set that up. We are a little lighter on our feet this week as God has lifted our load with this news!

We are also praying for those of you who have your trials and tribulations also. We know we are just a speck on this earth that has problems and that there are many out there with bigger trials than us. We pray for those that we know about! At times, I know that we all think God has given us more than we can handle but he never does. He might bring us to our breaking point and then lift us up to show us, "Hey, lean on Me, I am here, all you have to do is trust me and ask." We have given ALL our problems to Him and put them in His hands. He has shown us that he can do Great things. Better than we can even though we think we could do better!

Our next appt is this Friday but we will not have an ultrasound. So, I will probably not update til our Sept 11th appt.

Thank you again for all your words, e-mails and cards! It is wonderful to know how many people are out there praying for us and for our little precious girl! We have filled almost a 2nd book which is filled of all the cards, e-mails and posts! THANK YOU!!!!!!

July 27th - Doc appt

Sorry about the sideways pic. I cannot get it to go the other way. You can really see her cleft lip in this pic.

She is really thinking about something. :)

Well, there isn't really much to say...... We were very disappointed as they changed our appt with the neurosurgeon from July 27th to Aug 18th. We were so excited to go there as they were to tell us if our little girl was going to make it or not. I am sure God has a reason for it and I know this is his will for us to wait, but it is just hard to wait.We went to the surgeon that will be doing her cleft lip/palate. It was a bit overwhelming but all of that will work out. They will not do any surgeries til she is 5 months old. She will have to wear a mouth piece until then. They have this new method out that just came to Iowa from New York. It lowers the surgeries they are to have. If she makes it, she will only have to have 5 surgeries her whole life on her lip/palate instead of 9-10. Her first one will be at 5 months, then 11 months, then 2-3 yrs old, another one at 9yrs old and the last at 17. After her first 2 surgeries she will have to be fed by a syringe as they are not allowed to suck on anything. She will also have special bottles to use. They will be squeezable ones. They said it will take 1 hr - 1 1/2 hrs to do a feeding. In her first 5 months of her life, (Before her surgery) she will be wearing a mouth piece. There are 2 different ones that she might have....1) It is a slip-in one that will be formed to her mouth. She will go to the doctor once a week to have a new one molded to her mouth as the mold moves her palate closer together to help decrease surgeries.2) The other one is a mouth piece that will be put in during a short surgery. Us as parents, will have to tighten the screws in her mouth twice a day until her first surgery at 5 months old. This also moves her palate and lip closer together.They will not know what mouth piece will work better for her until she is here. We did go to our regular doc appt also. They told us that her bubble has grown. We were a little disappointed as they said it wouldn't grow. There is now Brain fluid in the bubble as well. Her head is now almost 7cm and her bubble is 2-2 1/4cm. I asked the doc if we could start buying our little girl anything yet. He said 'No'. I knew that that was going to be his answer, but was praying that something had changed. I have gone to a few garage sales and bought a few things. I know I shouldn't but I wanted a few things in case she does make it. We added a few new ultrasound pics of her. You can see her cleft lip really well in the pics. She has really filled out and getting chubby cheeks. I just LOVE seeing her every month on the ultrasound. We treasure it! We are now going back every 2 wks. So we go back Aug 13th to our reg doc and then Aug 18th to the neurosurgeon. I will update after we go to the neurosurgeon. Please pray with us that we get good news. We know that she has the cleft lip/palate and we know that she will be mentally challenged but we do not care. We are just praying that we get the joy of having her in our life for years to come. She is a very active baby. She is kicking, hiccuping and moving around like crazy. God is using her for great things. We just need to keep our eyes on Him! We know we are not the only ones out there with challenges in our lives. We pray daily for those of you who we know are suffering! There has been many deaths and trials for so many. Our hearts go out to you all. We just pray that God's coming is soon!!Thank you for all your prayers, letters, cards and e-mails. We have a few down days at times and it is like God has laid us on someones heart that day, as those are the days we will get encouraging words.I ran into a friend last night at a garage sale and she was telling me about her trials with a few of her pregnancies. She was so encouraging to me!You can tell that God's handi-work was at work in those pregnancies. God carried her through and you can see that God had it all happen for a reason. That is so true! Everything happens for a reason and we might not know for years to come, but God loves us so much and doesn't give us trials for no reason. We just need to keep our eyes on Him.