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!~~~~~~~