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.

June 30th - appt - 25 weeks along

Her hand in her mouth. She kept covering her ouchie mouth up. She doesn't like to show it off.

She is covering her eye. She was moving her one arm so it looks fuzzy.

Here is a profile picture of her. She has tiny ears and a small nose. You can see her cleft lip a little in this picture. You can tell she has filled out some from the last ultrasound pics a month ago.

We had our doc appt yesterday, June 30th. We always have an hour long ultrasound and a 45 minute doc appt. I love the hour long ultrasound and seeing her every month. She is growing great! She weighs 1 lb 6 oz. (I've gained 2 lbs in the month and she's didn't even gain a pound. Mmm..... Ha) Her bubble didn't grow, which is great! We love going every month and seeing how much she's grown. Her face has filled out and she is so much more active. I treasure EVERY kick and hiccup and movement.

While doing the ultrasound, they found that her heart would skip a beat. They took many pictures of her heart and checked every part of it. The doctor told us that he thinks that maybe it is just an immature heart and it will go away with development, but he is keeping a close eye on it. They also informed us that they are almost sure that she has a cleft palate along with her cleft lip. They cannot be 100% sure though til she is born. We asked how big her head is compared to how big the bubble is. Just to help us visualize it. Her head is 6 cm and her bubble is about 1 3/4 cm. Her head will, of course, grow but the bubble isn't suppose to. Her head is measuring a little small for being 25 wks along, but not to much. They said that it is measuring a week and a half smaller then what it should be. (That is one reason they are sure it is brain tissue in her bubble.)

They have set up appointments for us to go see the doctor that will do the surgery on her cleft lip/palate and also to see the doctor that will be doing the brain surgery. We are sooo anxious to go and talk with them. We will be able find out so much more. We are hoping that they will able to answer all the questions we have. We go to the doctor for her cleft lip/palate on Friday, July 24th, at 9:30. Then on Monday, the 27th, we will go to the neurosurgeon at 9 am and then our regular doc appt, with Dr Mandsagar, right after that. The neurosurgeon just came on staff today (July 1st). They said that if he didn't come on staff this soon, we would had to have gone to Iowa City. PTL!! See another miracle!

We have met and heard from so many new people during the last month. ALL the encouragement and wonderful words are great appreciated. Her first memory book is almost full and we have a 2nd one already bought. God has given us this little girl and we are so excited to see what God has in store for us! Many times we wish our pregnancies away wanting to hold our new little one; I love every kick, hiccup and movement that she does. I will truly miss this when she is born. I told Lenny that I just want to be pregnant forever with her. I know she is safe inside of me and I feel her all the time. We do not see all her problems as a horrible thing in our life, we see it as God is showing us to not take everything for granted and slow down and be happy and ready for each new day. You never know what God has in store for you! Amazing things come out of unfortunate situations. We would never want to change anything that has happened in our life the past 1 1/2 months. God has allowed us to meet and hear from so many people that we never would have met before. There are some amazing people out there. THANK YOU!! We love hearing from you. E-mail us any time. SLSASSMAN@IOWATELECOM.NET or find us on facebook in "Praying for Baby Sassman" group.

Many of you have asked when we are due. She is due to enter the world around Oct 15th. As of right now, he would like to take her a week early. So, right now, somewhere around Oct 7th. I usually go into pre-term labor, so he wasn't sure if we would be able to make the Oct 7th mark. Maybe Lenny will get his way and have a Sept baby. We will see. Praying to keep her in as long as possible though!

Deuteronomy 31:6 Be strong and courageous, do not be afraid or tremble at them, for the Lord your God is the one who goes with you. He will not fail you or forsake you.

Proverbs 3:5-6 Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him. And He will make your path straight.

Job 5: 8-9 But as for me, I would seek God, And I would place my cause before God: Who does great and unsearchable things. Wonders without numbers.

Dan went from his regular cast to his waterproof cast a few weeks ago. He was excited to be able to go swimming.

As of today, July 1st, he was able to get his cast off. They could still see the break but said that they could see the calcium build-up and it is starting to really heal. They allowed him to get his cast off (He broke the waterproof one last week.) and go to a splint. He still has to be very careful and has to go back August 5th for more x-rays to see if he can play tackle football this fall. It hurts a little, but I think what hurts him the worst is that once they took his cast off, he was scratching and he scratched some skin off. They said not to scratch as your skin is weak and it will come right off. (He learned the hard way.) He is so happy to have it off though!

Jake had his testing 2 weeks ago in Gus's Christian Black Belt Academy. He had to do his form, sparring, break boards and do his verses to pass his green belt. He did it and got his blue belt. I wasn't sure if he was going to pass or not. He was struggling, but was able to pass. He has now passed the white belt, orange belt, yellow belt, green belt and is on to his blue belt. Good job Jake! Keep it up and work hard!!!

June 2nd Doc Appt

In this pic, you can see her with her little hands to the side of her face. She has her pointer finger up. How precious! You can also see her cleft lip a little in this pic as well. We just love her sooo much!!!

This is a side view and if you look at the bottom back of her neck, you can see the bubble. They did say that it will not grow bigger.

Well, we had a doc appt at 8 am Tuesday. We got some good news and some bad news. They did a full ultrasound. A level 2 and a 4D. The 4D was so neat to see. She would move her hands in front of her face and feel the side of her face. Then when the tech was trying to look at her heart she would take her arms and put them on her heart. The tech would wiggle around trying to get her to move it, so she would move it for just a sec and put it right back up there. It was so neat to see.

The bad news is that her bubble is full of brain tissue. That is the one thing that we didn't want. There is also a small area in her brain that has a little more brain fluid then what it is supposed to. (More brain fluid also means brain damage) They are not sure what part of her brain will be affected but, yes, there is brain damage. They are not sure how bad. We have been praying for just brain fluid in the bubble, but I guess God has other plans. Lenny asked how he knew for sure it was brain tissue and nothing else. Well, he had told us at the last appt that her head was a little smaller than normal. So, he said that that was one sign. He also said that it wasn't fluid as fluid looks different. So, me (trying to look at the positive) asked him if it could be like a non-cancer tumor or just a big mass. He told me very unlikely. I asked him if I would carry her to term and he said, "Very much so, as you are doing everything for her, her body is under no stress."

The other thing he said is that he thinks her bubble is higher than her brain stem which is great. At the brain stem, is the part of the brain that tells us to breath. He said that if that part of the brain was in the bubble, she would have no chance. He did say that her bubble is close to the brain stem but that that part of her brain, he's almost sure, is not in the bubble. He said that there is a slight chance that the bubble is so close to the brain stem that the surgeons will not want to do surgery as it could lead to death. He said that that is for them to decide, not him. That will not be decided til after she has arrived into the world. Pray that it isn't that close and that they will do the surgery.

The good news is that her chances have gone up from 21% chance of making it, to 80% since that part of her brain isn't in the bubble. He is asking us to go to visit Hospice for newborns, just in case. He wants us prepared. He said that you never know what is going to happen after birth or while in brain surgery in such a small baby. (Anyone actually)

He said that he will be getting a whole team ready for the day of her delivery as a lot of people need to be there so she can go right to surgery. So, he wants it scheduled in advance. That also gives me time to tell my daycare parents what day I will not be here. My mother/family have told me that they would help with daycare while I am up at the hospital but we think all family members should be up there the day she is born, in case she doesn't make it.

Please pray that all will go well. The picture of her with her hands to the side of her face, just makes us melt and cry. We just love her already!! We are just praying for a miracle. God has given us many miracles, we know. One miracle God has given us already is by upping her chances of survival. We know God will be with her and us during all of this. Everyone wants a healthy baby and it is sad when you are told that that is not what you are going to have. But we do not care what she is like. We will accept her no matter what. We just want our baby girl. I think God is going to do great things with her. We have had people tell us that we shouldn't put us, our family, or this baby through any of this and that we should get rid of her. WHAT?!?!?!?! She is a gift of God. God NEVER makes mistakes!!! Seriously, some people have no trust in God. We have drawn closer to God and no matter what, we will be there for her. God has a purpose for her life. We do not know what it is, but there is a purpose for everything.

Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future."

Thank you ALL for the e-mails, cards and posts on facebook. They are so encouraging. We have saved/printed every single one of them and put them in her book that we are making. Add us on facebook (Staci Van Der Hart Arnett Sassman)if you would like as we update that often or e-mail us anytime. We love getting your encouraging words or any questions that you have. Please let us know if there is anything that we can pray for in your life/family. We have a long prayer list and would love to add you to it also. I know we are not the only ones out there that need prayer! slsassman@iowatelecom.net

On a side note, God keeps our lives full and interesting. Lenny was gone on Saturday, up in northern Iowa, working on a friends semi and Brady went with him. My sister and her family came by to see if we wanted to go eat with them. The two oldest boys (13 & 11) didn't want to go and wanted to go with Jared's friends and ride bikes on the bike trail. I let them. Well, while I was eating, Dan,11, called my sisters phone (Mine was in my purse under the table. Not smart.) He said, "Mommy get home, I think I broke my wrist." I got up to leave and my brother-in-law thought he better go with to help me out. (THANK YOU!!) We took him in and sure enough his wrist was broken in 2 places. His brother and friends had left ahead of him so he walked/rode his bike all the way home with a broken wrist. Newton hospital said that they couldn't do anything about it until at least Monday, but DSM would be able to treat him right away. We wanted to drive him up there ourselves but Blank Children's hospital, said no as they wanted him on an IV and morphine before he got there. So, he had an ambulance trip. Once he got there they put him out and fixed it. We got home later that evening and he has a lovely pink cast. Yes, pink. He wanted that. The doc was kidding around with him and asked if he broke his wrist playing hopscotch. They were great up there!!

While was typing this I had a friend stop by and ask what we found out. She said that she was woken up at 2 am with a heavy heart to pray for us. See, God isn't finished with our baby girl yet! She has people praying for her and God will and is doing GREAT things!

We go back June 30th for another full ultrasound and see if we can talk to one of the surgeons. Please pray for a miracle!!!!! I will keep updating as we get news. Aain, thank you for ALL your prayers, e-mails, cards and words of encouragement. They help us get through this. We know there are people out there everywhere praying for our little girl. Please pass this web site out to anyone that would pray for her.Please continue to put her on your prayer chains at church. God is great!!!! THANK YOU!!!!!!!!

Update!

We got a call from the doctor office this morning and the in-depth amnio results came back. It shows that all 43 chromosomes that were tested came back as normal. PTL!!!!! We were soo happy! No, this doesn't mean that all is fine, it means is that she doesn't have anything else wrong with her besides what they found in the ultrasound. They told us that with what she has wrong, it usually means, they will have a lot more wrong with them. Well, God showed them! God is already working miracles!!! We are anxious to go back to the doctor on Tuesday as Lenny said that he has tons of questions for him. Was it really a bubble they saw, or was it a shadow? How can these tests come back good but they are saying she has a neural tube defect? How bad is her cleft lip? If the bubble is there, is there brain tissue in it? We have tons more questions and we are praying that they can answer them all for us next week. We are just seeing God working in her and us and praying for a miracle. We are praying that God heals her totally! There are days I just want to cry and go hide in a shell but then there are days that I can get up and conquer the world and know that God is in control, not me. I think I pray 24/7. This has brought me so much closer to God. At first I was bitter with God and life and everything. But God has put so many verses in my mind daily! I was really bitter earlier this week and that day I got something in the mail from our homeschooling (NICHE). In it they were talking about bitterness.(Gee, thanks God! He knew I needed it) In the story, it said, "Learn not to take things personally, but give hurts and disappointments to God. We must realize that bitterness seems to be directed at people, but it is ultimately toward God." It also said in there, "God allows trials to come into our lives to make us better, but satan fights to get us to become bitter." Well, that was me! I was allowing satan to win. God gave me a wake up call.

We want to thank everyone for the e-mails, cards and so many words of encouragement! You will never know what that means to us. We have started a book for this little girl, so she can see how many people were praying for her and thinking of her! If God decides to take her home, it will be wonderful to look back and see how many people were there for us and praying for her/us! THANK YOU!!!!

We go back Tuesday, we will update again, when we get back. Again, THANK YOU for all your encouraging words!!!!!!!!!

Our Baby Girl Needs Prayer!!

Well, I am not sure how to start....... We have found out some news this past Monday that has really shaken us up. We went to the doc for a regular check-up and then we were off to the specialist in DSM for a level 2 ultrasound. They said that since I am over 35, we just needed to get a ultrasound from a specialist to make sure all was ok. Well, the doc appt in Newton went great and I was getting nervous for the other one. We got there and we were able to see the baby. All looked great. She (yes, it is a girl) was kicking her feet and arms, I was mesmerized. Daddy was excited to hear those words, "It's a girl." During the ultrasound, they were pointing to different things and there was something that kept coming up, but the tech would never say what it was. I finally asked "What is this bubble that I keep seeing?" The tech said, "I am not sure but I am taking a lot of pics of it.It looks like it is on her neck." She then got done doing the ultrasound and left the room to get the doc. We had to wait for an hour for him as he was at the hospital delivering a baby. Once he finally came in, he did another ultrasound and then proceeded to tell us that the baby has a bubble on the back of her head. He said that it looks like the back of her head has an opening and then the bubble covers it. He was not able to see if there was brain tissue in the bubble but he said that he was almost sure there was brain damage. He said that if there is brain tissue in the bubble, then she only has a 21% chance of survival. She also has a bilateral cleft lip. He immediately wanted to do an amnio and prepped me for it right there. Needless to say that was painful and I found out later that they usually give you a shot first to numb you but he didn't want to take the time for that. (Lenny said that that might have helped him keep feeling in his hands during the process.)

We do not know why God has allowed our little girl to have so many problems. We feel like God is really testing us right now. I am asking for EVERYONE to pray for our little girl. We are praying for healing for her but if God decides not to heal her, then we are asking that He just allows her to live. We do not care if she has brain damage or a cleft lip. We will do whatever it takes for her. We love her already and we will feel proud that God thought we could handle a "special" child. We are just asking for prayer. We want her to live. Again, we are asking for healing, for a miracle, but if God doesn't give us that, we are praying for her to live. We are praying that we do not have to give her up to God already, but God knows better than us. We have our ups and downs.

The doctors have also told us that with this problem she has, they usually have many other problems. They did 2 testings with the amnio. They did a fast one and a in depth one. We got the fast one back saying that she is 100% a girl and that 6 out of the 43 chromosomes that they tested are normal. She also doesn't have Downs or Spina Bifida. So, we have gotten a little good news. We will get the rest of the test results on the other 37 chromosomes this coming week.

We go back June 2nd for another round of ultrasounds (3D) and see what else is going on. They are not allowing us to doctor in Newton anymore. We have to go to Mercy for doctoring now. We are praying that they do not see brain tissue in her bubble. We do not care about a cleft lip or anything else, we just want our baby to live! Please pray with us that God will heal her! I know that some day I will see her in heaven if God calls her home. But it will be so hard if we do lose her. We love her so much! Brady calls her his "rock star sister".

We are asking for you to keep our baby in your prayers. This is a emotional roller coaster ride for all of us. Please pray for her! We will keep updating this as we get news. You can also comment us or e-mail us at slsassman@iowatelecom.net . Please put us on your prayer chain at your church. Our baby girl needs prayer! Help us lift her up in prayer!!!!! You can pass this web site on to others for prayer as well!!!!!

SURPRISE!!!!

Two posts in one day. Whoa. I'm on a roll....... HA

Well, we have found out a few months ago that we are expecting baby #6 (Well 6th baby for me but 7 total in the family, counting Austin) We are due around the middle of Oct. Brady thinks this baby is all his and no one else. He asked us the other day what he is supposed to do with the baby when he is at school. We asked him what he meant and he said, "Oh, I will just ask my teachers if I can take the baby with me to school." Sure, Brady...... :) I am 15 wks along. I go May 18 to a specialist in DSM for a in depth ultrasound. They say that since I am 'Old' (Over 35) that I have to have one done. The kids are hoping we find out what it is. I told them that I am sure it is another boy as this pregnancy is just like the last 4. I have not had morning sickness but need to make sure to eat every 2 hrs, as if my tummy is empty, then I feel icky. We have made the basement living room into the master bedroom as we are running out of rooms. HA We got the paper in the mail on Friday also. Brady made it into Kindergarten. YEAH!! He is excited to go to 'Big Boy" school with Dan and Jake. He asked the boys if they will play with him at recess.

This is our room now which used to be the family room downstairs. We still have to finish building the closets but other than that it is nice. I have never had a big enough bedroom to have a recliner and a sitting area in it. It is my little get away. We just need a fridge/stove/microwave and we will not leave. HA It is nice during the winter as we have the fireplace in there. I didn't take a pic of the sitting area but we are enjoying it.

Ultrasound at 13 wks along. If you look by the ear, you can see his little hand and arm curled up.

Where do I begin.......

Well, I have not posted since Nov. So here I go. When you look at these pics start at the bottom. I accidentally posted them backwards. SORRY!!!!!! We have Jared, Dan and Brady's birthday. We have the new carpet and Jake passing his White, Orange and Yellow belts for his Christian black Belt Academy. I wanted to catch ya up. In Nov we went to ride the Polar Express train in Boone and also went to Disney on Ice. Dec brought Christmas, which is always wonderful but to expensive. Dec also brought testing for Jake's' White belt. January brought Jared's 13th birthday and also Jared started homeschooling. Feb brought testing for Jake to try and pass his orange belt. March brought Dan and Brady's Birthday and pine derby race. April brought Easter and Jake's testing to pass his yellow belt. So far Jake has passed all of his testings. He is on to his green belt.

Here is another pic that he took of himself. April '09
Brady got ahold of my camera at Jake's black belt testing and he was a little bored and started taking pics of himself. Interesting,eh???? April '09

Jake has now passed his yellow belt and is on to his green belt!!! Way to go Jake! April '09

Grandma VanderHart brought a pinata back from Mexico so we let the kids do it on Easter also. April '09

My kids and my niece and nephews running out for the Easter Egg hunt. April '09

My daycare kids just got done doing their Easter egg hunt and they couldn't wait to dig in! April '09

Jake at the pine derby races. He won design in his class 03/09 Him and Lenny made a semi carrying logs. March '09

Brady at the pine derby races. March '09

Brady's birthday cake. He turned 5. March '09

Dan's other birthday cake for his 11th birthday March '09

Jake was a "rat" in the play at school. March '09

Jake passing his orange belt and moving up to yellow! Feb '09

Dan's birthday cake. He is 11 now! Len & I made this one. March '09

Here is the new carpet! I just love it! I forgot how new carpet feels. I love taking my bare toes and rubbing them through the carpet. Feb '09

Lenny tearing the carpet off the steps Feb '09

Grandpa and boys tearing out the carpet! Feb '09

Tearing out the old mauve carpet! YEAH! I have waited for 5 years to do that~!! Feb '09

Jared's 13th Birthday! Jan '09

Jacob passed his White belt and is onto his orange belt. Dec '08

We rode the "Polar Express Train" in Nov '08