Kylie's Central Line Out and Austin Here!

Oh boy! And I really do mean that--our precious little bundle, Austin Joel, is here. Two weeks ago today was a day of craziness and complete blessings all in one. That Tuesday morning, I received the call from Dr. Abdessalam's office that we could discontinue Kylie's TPN. That call was so incredibly relieving, but even more relieving as my day progressed. As I mentioned in my last post, I had been feeling so awful--unable to sleep, nauseated, and incredibly itchy from head to toe for a couple of weeks. That same Tuesday morning, I received a call from my OB doctor with some lab results that had come back from the day before. There was a reason I was feeling so bad--they diagnosed me with a rare pregnancy-related liver condition called obstetric cholestasis. My doctor told me that I was at a high risk for a still-born birth and that they would be monitoring me very closely. I was completely overwhelmed with this unexpected news and just started praying that the Lord would give me peace and protect our little baby. It wasn't but a few hours later that I started feeling contractions. I seriously thought, this isn't really happening--not six weeks early! Well, it was. We were up at the hospital at 7:30 in the evening and Austin (6lb. 6oz) was born at 10:24pm. Everything went so smoothly and we are so incredibly blessed to have a healthy baby boy. We stand amazed how the Lord worked everything out that day.

Well, here we are two weeks later...Kylie has her central line out and is eating really well! I am feeling SO much better. Praise the Lord that the cholestasis was just pregnancy related. Perhaps that was the reason that I went into pre-term labor. I don't know if we will ever know for sure. Austin is doing just fabulous. He is still in the NICU and we hope that he will come home in another week or so. We are just waiting for him to take all of his feedings by bottle. He sometimes is still too sleepy to wake up and eat. Carson and Kylie still haven't gotten to meet him due to the current flu season regulations. We are so excited to bring him home!

An Exhausting Past Month

It is definitely time for an update. I hardly know where to begin. This past month has been crazy and exhausting. Kylie is still on her TPN and not eating great. We also were having some major concerns with the function of her intestine in the first couple of weeks we were home. Things were just not moving through like we expected or like the doctor expected. However, it appears that the issue isn't a function issue but rather a psychological one. With all of the trauma of the past year, we are dealing with some issues of her wanting to hold everything in. However, the Lord is good and we have seen some really great progress in the past couple of weeks. I think it could be a long journey, but we are thankful for where we have come. However, on the brighter side of things, I am amazed at my happy, confident little girl. It has been so long since I've seen her as happy as she is!

We would appreciate your continued prayers for the return of Kylie's appetite. I never thought running Kylie's TPN at night could be so interrupting and exhausting. Although she is completely potty trained, everything runs right through her while she sleeps and so we are changing her every couple of hours. I have been trying to survive on about 3-4 hours of sleep a night for the past month. I know that being at the end of my pregnancy doesn't help the sleep issue either. I am so sleep-deprived that I've just felt sick this past week. Even when I have the opportunity to sleep--when Kaycee takes over--I can't ever seem to fall into a deep sleep. I would truly appreciate your prayers for good rest as I've been forced to train my body to wake up constantly and am now having difficulty breaking this routine and sleeping at night.

So Good to be Home

We are home at last and are so thankful. Yesterday was such a long day of waiting and finishing up on all of my training. We were dismissed about 5pm. I was really anxious about getting Kylie all hooked up to her pump last night. My mom graciously came out to help and support me. It all ended up going really well. Kylie has a twelve hour infusion of her nutrition from about 8pm-8am. It is quite involved to get everything ready and hooked up, but I know that it will only get easier each time I do it. This morning, she is doing well. She's been resting some and playing some. Carson is still at Opa and Oma's and they will keep him for just another day or two so we can get used to Kylie's pump and get settled once again here at home. Kylie has an appointment tomorrow morning with Dr. A. He will be the one overseeing her labs and nutrition until we are off of the TPN and lipids.

Again, we cannot express how thankful we have been for all of your prayer support. The Lord has sustained us through the past two weeks and we will continue to trust Him with Kylie's future. Will try to post updates here and there to let you know how she's doing.

Miraculous News

Kylie had an x-ray this morning which revealed that all of the air that was there just yesterday is completely gone today! It is truly a miracle of God and we give Him all of the praise and glory. Though the air is all gone, Kylie does still have what they call an "ileus". Basically, this means that her intestine has not completely kicked in and started working in its entirety as of yet. This commonly occurs after abdominal surgery and doctors are not at all concerned. This will work itself out over time. She has been given permission to eat whenever she is ready. However, she isn't to that point quite yet. From a surgical standpoint, Kylie is doing great, and they are ready to send her home now that the air is all absorbed. So this is the plan...she can go home tomorrow on TPN and lipids (nutrition through her central line). This way, Kylie can start eating whenever she feels good enough and she doesn't have to be a prisoner in her hospital room. We are so thankful that Dr. A suggested putting a central line in when he did the surgery a week ago. At 5pm tonight, the home-health nurse is coming to give me my first session of training so that I can give Kylie IV fluids at home. They will come back tomorrow morning and give me a second teaching session. We are so so excited about this news and cannot wait to be home once again. It is so sweet to see Kylie's spirits lifted by this great news.

No Leak!

My mom and Kylie just returned from the procedure. They did NOT find a leak. Such a huge huge praise! Dr. A is saying that her intestine is just really, really slow to wake up. They want to continue to give her more time to recover and keep her on the TPN.

Off to X-ray Procedure

My mom so graciously took the afternoon off of work so that she could come and help me out this afternoon. Since I can't be in the radiology room with Kylie due to being pregnant, my mom is going with her for her procedure. For this procedure, they will put some contrast up her bottom and look for a possible leak in the intestine. If there is a leak, another operation will be absolutely necessary to fix the leak. Thankfully, they will be giving her some Versed to help sedate her. Will post something as soon as we hear the results of the test. Thank you for praying.

Watching and Waiting

Brianna reading "Nurse Nancy" to Kylie

A walk in the hall with our masks on

Taking a break sucking the fingers with blankie

It has been a very long past couple of days as doctors are continuing to watch Kylie very closely. Her x-rays are still showing a good amount of air outside of the intestine which would suggest a leak. However, her physical exams continue to look excellent--her tummy is nice and soft and there is no tenderness whatsoever. To have air outside of the intestine 6 days after surgery that has not been absorbed by the body is VERY concerning. Doctors keep expressing how abnormal this is. It is normal to have a small amount of air after an operation that is absorbed by the body soon after. They have been drawing Kylie's blood every day to check for infection. If she would have a leak, she should be showing signs of having a bad infection. However, her white blood cell count couldn't be more normal. So, at this point, doctors are very very confused. For now, they just want to continue to watch her very closely.

Today is the first day that she has felt better since about Tuesday last week. I think that part of the reason that she is feeling so much better is because her TPN has kicked in and is giving her some energy. She has lost so much weight, it is unbelievable. She is seriously so fragile--just skin and bone. It has been such a long past few days in our room since they have instituted the new H1N1 policies. However, we have a huge answer to prayer as of today. Kylie's doctors want her up and walking in hopes that it will help to move this air. So, they have given a special order for her to leave her room and walk 4th floor with a mask on. This has been SO therapeutic for her today.

Kaycee went out and visited Carson today. Carson has been doing so good with Opa and Oma. He said that after Carson's nap today, Carson showed him how he goes out and collects the eggs from the chickens. He puts them in a bucket without breaking them :) And then he showed dad how he pedals the old John Deere tractor. Carson has just recently gotten really good at pedaling from being around his cousins so much. I guess that last night they all had a bon-fire and roasted hot-dogs and marshmallows. He's having the time of his life and I'm so so thankful for all Kaycee's parents have done and continue to do for us.

I am also so incredibly thankful for my mom and Brianna who come and visit us every day. My mom has brought some wonderful meals up to us. The cafeteria food gets old really fast, so her cooking has been such a treat. Brianna is a great little nurse to Kylie. She's practicing now because her dream is to be a nurse someday :) Tonight, she helped me walk Kylie in the halls, entertain her with games and toys, and helped me give her a bath. I praise the Lord today for the blessings of family!

New Development

It seems like a lot has happened in the past 24 hours. Kylie had an incredibly great day on Wednesday. She was up and around a ton...on walks around the floor and to the play-room to play. We also knew that she was feeling better because she started getting demanding and commanding us around :) We were so thrilled with her progress.

Yesterday morning when she woke up, I could just tell that she was a completely different girl. I thought that maybe she was really uncomfortable because they had taken her off her morphine. As the day progressed, she just felt and looked so ill. I was really getting worried. She did not want to leave her bed all day long. Late afternoon, I asked if a resident would come and examine her because I noticed that her tummy looked quite distended. He did come by and said that he wasn't too worried but that things are probably distended just because they are slow to start kicking in and working again. They said that they would just keep an eye on her. Through-out the evening, she started having her first poops since surgery--yeah!! We get really excited about that around here--pathetic, huh?

Kaycee stayed the night with her and said that it was a rough one. She didn't sleep at all until 4 am this morning. About 3 am, she threw-up which was definitely concerning. So shortly after that, she went down for an x-ray. They put her back on a little bit of morphine which helped her go to sleep almost immediately. She slept till 9:30 this morning when the docs came in for rounds.

So here's what her x-ray showed...unfortunately, it appears that there is some air located outside of the small intestine which is very concerning. When they connected her small intestine to her rectum on Monday, they checked to make sure that everything was completely air tight and water tight. And the test passed--everything looked wonderful. So, Dr. Abdessalam is very unsettled right now. If there is a leak in the intestine, it would require a re-operation. I can hardly bear the thought of sending Kylie back to surgery right now. However, her physical exam this morning looked so much improved over last night's (distension is much improved) that for now they are just going to keep a very close watch on her tummy. I believe that she will have another x-ray later on today. They may have to put some contrast up her bottom to get a better idea of what is going on with this possible leak. Doctors and nurses will be in frequently today and keeping a very close eye on her. If she would start to develop a fever or any abdominal tenderness, that would be a huge red flag and they would probably want to get her to surgery right away.

They are also starting Kylie on TPN (total protein nutrition) today since she has not eaten in a week.

The other huge development around here at Children's are the new policies that they have instituted over-night due to all the cases of H1N1. It is just erie around here this morning. Starting this morning, everyone has to wear masks. I have to wear a mask everywhere but in Kylie's room and all the docs and nurses have to wear masks into the patient rooms. Fifty percent of each floor is infected with the flu. I guess that kids that were coming in with totally unrelated problems were contracting H1N1 symptoms within 24 hours of being here. The playroom is closed on all of the floors now and Kylie is confined to her room. Please pray for her sanity as she is used to getting out of her room. Kaycee and I can relieve each other, thankfully. But I worry about how cooped up Kylie is going to get. I also wanted to let all of you know that they are supposedly not allowing visitors. The only people who are permitted into the patient's room are the parents, grandparents, and siblings. I will let you know if that changes at all.

We'll keep you posted as to how the day progresses.

Operating Room Pictures

Dr. Abdessalam took some pictures for us in the operating room. After doing some contemplating, I have decided to post them. However, so you know, they are pretty graphic. So, do NOT scroll down if you don't think you want to see them. I am continually amazed every time I look at the pictures. After Kylie had her ileostomy for 9 months, her large intestine was about the same diameter of a grown man's thumb. The pictures below clearly show how huge and abnormal her colon became after her reconnection surgery just four weeks ago. In the second picture, you'll see a very enlarged portion of the colon on the right side. Dr. Abdessalam said that that area was the size of an adult's colon! Not a four year old's! I still can't believe all that fit inside her little tummy. So, here they are...........

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One meter in length

Up and Around Today

Kylie has been doing wonderful the past couple of days. Today is the first day that she has been up walking. We walked to the playroom this morning and played for a long time. She begged all morning to eat something but they are not allowing her to eat or drink anything for the time. It is almost 3:00 and she has been napping since noon, even with all of the distractions this afternoon. I am so so glad to see her resting soundly. I think that's all I know for now.

Thru Surgery and Doing Well

Kylie made it through surgery beautifully. She was back in the operating room for about three hours. Dr. Abdessalam came out to give us the full report at about 3:30. Her colon was about 1 meter in length (3 feet). The circumference of the colon was that of an adult--clearly very enlarged for a child her age! He took some pictures for us to see and it truly was unbelievable that all that could be in her little tummy. They sent her colon to pathology for further study. They also put in a central line while she was back in the OR so that she would not have to poked at any more if her IV went bad. The central line is also there in case they need to give her any TPN (total protein nutrition) should she not be eating well. We are all amazed at how flat her little tummy is now. It is unbelievable. Kaycee is staying the night with her tonight.

Good-Bye Colon

Kylie went back to the operating room about 12:30. I told her about 11:30 about the surgery and I'm thankful I didn't tell her any sooner. She cried and cried. She kept saying,"I'm just so tired of being here", "I''ve been here long enough", "I want to go home". It was just heart-breaking. She kept trying to hide under her blanket from all of the nurses. It was kind of funny, but poor thing--she didn't know how else to respond to everything going on. I really think that the roughest days are behind us...getting the IV in, ng tube, and the clean-out process. She will be sore, but I think that things will look up after today. I forgot to ask how long they expect the surgery to last, but we'll let you know when she is through. Thanks for all of your prayerful support!

Removal of Colon Today

Here's a picture I took of Kylie's very distended tummy before we left home

The no-fun ng tube

A wagon ride down to the lobby

Kylie's doing good on this Monday morning. We've already been out for a wagon ride around the floor upon her request. Surgery has been moved to noon instead of 1-2 in the afternoon, so that's good news. I also failed to mention the other day that Dr. A was able to contact the motility doctor in Ohio regarding her situation. This time, he spoke with Dr. DiLorenzo, the top doc on the motility team, which was great. He sent them her terrible x-ray and Dr. DiLorenzo completely agreed that her colon absolutely does NOT work. He doesn't have answers as to why the motility testing came back normal. However, they both agreed that their only option is to go ahead and remove her colon. Dr. DiLorenzo did say that if this surgery is not effective for her, the problem most likely lies in her pelvic floor. It has to do something with the positioning of the rectum--sorry, I don't completely understand it myself or else I'd give you a better explanation. There is no way to test for this condition in children though it can be done in adults. With this condition, the only treatment would be a life-time ileostomy. Dr. A is very optimistic that her pelvic floor is not going to be the issue. Would you please pray with us that removing her colon would be completely effective?

Sat Evening and Sun Morning

Yesterday seemed much like the first day that we were here almost a year ago. We just happen to be on the same floor and have used the same procedure room as a year ago...not good memories. Yesterday evening was absolutely heartbreaking. On the 7th attempt, they finally got Kylie's IV in. Apparently, the vein kept on blowing. How do you explain the reason for continuous poking and prodding to a four year old. After they finally got the IV in her foot, they put the ng tube down. Every adult that I've ever talked to who has experienced one says that it is awful. Poor little thing. I would have done anything to be in her place. And then following the insertion of the ng, they irrigated the rectal tube. With this hospital stay being her 9th admission this year, you would think that she would be somewhat used to these things. Kaycee and I think it has almost gotten worse and that she fights these procedures more. We were finally out of the treatment room and back to our room by 11:00 last night. She was so utterly exhausted from all of the fighting and crying that she was basically asleep by the time Kaycee carried her back to her bed. All I could do was sit by her bed beside her and cry after all that.

Kaycee stayed with her through the night which went fairly well and I spent the night at my mom's. She slept good until about 4am this morning. When I got up here this morning, she was laying in Kaycee's arms in the chair holding a new toy that they gave her. In the past, she hasn't done much talking with her ng tube in. However, she wanted to show me her new toy. I was surprised to hear her talking about her toy she got for being so brave last night. She's handling her ng tube really well this morning. We praise the Lord for a new day today and for getting Kylie through her first night back here. I am also so thankful for Kaycee's parents who are caring for Carson once again and for my mom, aunt, and sisters who have been up here helping us out. The Lord is so good to provide for our needs.

A dear friend e-mailed us the comforting words of the hymn "Be Still My Soul" this morning~

'Be still, my soul--the Lord is on thy side! Bear patiently the cross of grief or pain;
Leave to thy God to order and provide--
In every change He faithful will remain.
Be still, my soul--thy best, thy heavenly Friend
Thru thorny ways leads to a joyful end.

Be still, my soul--thy God doth undertake
To guide the future as He has the past;
Thy hope, thy confidence let nothing shake--
All now mysterious shall be bright at last.
Be still, my soul--the waves and winds still know His voice
Who ruled them while He dwelt below.

A Rough Afternoon

Well, we are here. It has been a rough afternoon though. After we first arrived, they put in a rectal tube in order to help with her tummy distension. So far, we have had FOUR unsuccessful attempts at an IV. Right now, they are contacting the doctor to see what he wants to do. After they get the IV in, the next thing to tackle will be getting her ng tube in which will need to be in until midnight tomorrow night. I am so dreading the all out fight it will be. It is so hard to have to watch her go through these things. Our prayer is that her Heavenly Father will comfort her through these very unpleasant circumstances.

Admission This Morning

Yesterday was a discouraging day. Kylie had an x-ray and then a visit to Dr. A's office because there hasn't been any progress with the medications that she has been on for a week now. Her x-ray was absolutely terrible--so bad that he needs to admit her. She is at so much risk for another awful c-diff infection. So, we are heading to Children's between 9 and 10 this morning for admission. He gave us until this morning so we could go home and prepare. The plan for now is surgery on Monday at 1:00 to have her colon removed. He has come to the point where he feels there is nothing else we can do. Yesterday afternoon, he was going to put in a call to the motility docs in Ohio, send them her x-ray, and see if they had any other suggestions. These next few days could be very difficult and we would so appreciate your prayers. They plan to put in an ng tube to give Kylie the medicine needed for her clean-out before surgery on Monday. We will be leaving home soon and will keep you posted as to what progresses throughout the day.

Where Are We Headed?

So in the last update, I mentioned that we were waiting for Dr. Abdessalam to contact the motility doctor in Ohio and try to get some answers as to why Kylie's colon was not starting to work following her reconnection surgery. Last Thursday, he called me with what I considered very encouraging news. The motility doc said that it can take up to three months for the colon to kick in and start working after a reconnection surgery and that Kylie should be on a couple of medications to help get things moving. So, upon her recommendation, Dr. Abdessalam started Kylie on two medications--both of which have NOT produced hardly any results since she started them one week ago tomorrow. This just should not be and has us very concerned. I put a call into Dr. A's office today. If there isn't any movement of her bowels by Friday, he wants to see her. We just wonder what in the world is going on in her little body. There still seems to be some sort of motility problem even though all of her test results came back SO incredibly normal. Her poor little tummy is getting so big again. She was so so cranky today and I just think it has to be that she feels so huge and full. She hasn't been eating well either. Poor little girl. I wonder if they will send us back to Ohio? It has been brought up before by Dr. Abdessalam. Oh, I dread the thought of it. How can this be such a mystery?

X-ray and Appointment Today

It seems that this past week has been kind of an emotional roller-coaster. One moment I am thinking that things are going much better and then the next, I am so concerned. Sorry that these updates all revolve around poop--not very pleasant to write about or read about. But in order to help you understand what exactly is going on with her intestine, I feel I have no other option. I was getting really worried last week as Kylie's abdominal distension was increasing, she was not pooping, and not eating well. Then all of a sudden over this past weekend, she started eating super good and began having some bowel movements. I was just so sure that her x-ray this morning had to look improved over last Monday's. However, that was not the case. Kylie's x-ray this morning looked terrible. It showed that her intestine was full of stool and gas. I'm sure that Dr. Abdessalam is ready to throw his hands up and say he doesn't know what else to do for us. I know that he has to be frustrated. However, his next plan is to contact the doctor who did Kylie's motility testing in Ohio and see if they have any more insight. In the mean-time, we will just be waiting to hear from him. We would sure appreciate your prayers for both of these doctors--that they would be able to come to a diagnosis for Kylie or that they would be able to lead us in the right direction. Another prayer request of ours is that we might be able to come to the end of all of this by the beginning of January when our baby is due.

I should also mention that Kylie seems to be feeling great, which is a huge blessing. She doesn't complain of tummy aches or doesn't ever seem to feel uncomfortable. She never did as a baby either and I have no idea how she didn't just feel so irritable and miserable. I would just about get miserable for her by looking at her huge tummy.

Monday's Appointment

Kaycee and I are encouraged after Kylie's appointment yesterday afternoon. The x-ray looked slightly improved from the one she had last Friday. Secondly, we've had some good success in movement of the bowels. These two things have provided us with much relief and hope once again. She has another x-ray and doctor's appointment a week from tomorrow.

The Weekend at Home

We got home about 12:30pm on Saturday. As soon as we were in the door, Kylie was off to play. We hardly heard from her for the next hour. She had had so much one-on-one time in this past week that I knew she was ready to just be alone. We all had a long afternoon nap and it was absolutely marvelous to have our own beds back. There were so many sleepless nights on the hospital couch between Kaycee and I. This morning, we went to pick up Carson from Kaycee's parents. It is so good to be all together once again.

We want to ask for your continued prayer for Kylie. She is feeling great and seems to be completely recovered from her surgery. However, Kaycee and I are quite discouraged and concerned about how her system is working. She has not had any bowel movements for about three days now. I will be checking in with Dr. Abdessalam tomorrow to give him an update since we've been home. I just don't know where we are to go from here. She has had every test possible in the past year and a half--she's been scoped, had an upper GI and small bowel series, had biopsies, been tested for inflammatory diseases, had allergy testing, motility testing. Every test comes back COMPLETELY normal yet something is so very wrong. It is very frustrating and such a mystery as to why her colon will not work.

Ways that you can pray for us:

• Please pray that Dr. Abdessalam would be given much wisdom as to how to help Kylie.
• Please pray that Kaycee and I would be given patience in waiting.
• Please pray that the Lord would miraculously heal Kylie's body~that her colon would start functioning normally.

Pictures

Saturday

We are in somewhat of a tough situation right now. This is the deal--Kylie was given permission to begin eating anything of her choice yesterday at lunch. She's been doing great with eating and drinking. They also disconnected her IV fluids yesterday. She is feeling super good--playing, running around. We couldn't be happier with her physical and emotional state. However, her colon just doesn't appear to be functioning properly. We don't know if this is something that will work itself out over time or if ultimately she will have to have her entire colon removed. Since they are not doing a lot for her here at the hospital right now, her doctors have said that she is free to go home. Rather than stay here and wait around to see what her colon is going to do, we've decided to go home and wait it out. We will be keeping a close watch on her tummy distension, body temperature, bowl movements, etc. We'll also be in contact with Dr. Abdessalam this next week. We are very hesitant about about this entire situation but know that everything is in the Lord's hands and we trust Him.

Doctors Concerned, Baffled

Kylie has been feeling really good physically the past couple of days. She has been up and around a lot. The tough part about yesterday was just seeing how sad she was. She is so ready to go home and just looked depressed and expressionless yesterday. I tried to think of everything possible to cheer her up. We went for lots of walks, took a trip to the rooftop patio, painted her nails, listened to music. I finally called Kaycee and told him to bring Carson up. I thought that might be really therapeutic for her. And it did help. It was just really great to be together as an entire family for an evening.

This is Kylie's current medical situation: She has been going down for an x-ray every morning. The partial obstruction that was an issue a couple of days ago is all cleared up. But unfortunately, there is a new development. The x-ray is showing that Kylie's large intestine is very distended (as was the case a year ago). When she had her reconnection surgery a week ago, the intestine was absolutely, completely normal in size. It is such a mystery as to what would be causing this distension now. The doctor and radiologist have also observed that a good portion of the colon is smooth and does not have features. This is not good. They should be seeing what they called, "features". So, what does all this mean? She may possibly have an infection in her large intestine. They started treating her for an infection today. The really nice thing is that they are opting not to test her for infection because if they did and the test came back positive, she would be confined to her room. So, they are just going ahead and treating her without officially testing her. Dr. Abdessalam is absolutely baffled as to why all of this is happening based on the completely normal results of the motility testing. She has had just a slight fever in the past 24 hours which got me really concerned last night even before I knew about the situation with her colon. She had been completely fever-free before yesterday. The doc has put her back on a regular diet now that her obstruction is not an issue. It will be interesting to see how her colon handles the food.

Things I am thankful for today...for Kaycee who has spent the past two nights with her so that I could get sleep at home, for how well Carson is doing at Opa and Oma's and the chance we could all be together last night, for Kylie's renewed spirit today, for the wonderful doctors we have caring for our little girl, for all of the incredible support and prayers from family and friends, for a God who will never leave us or forsake us and who continues to uphold us in the midst of discouraging times.

A Super Great Day Today

Kylie did end up having her first poop late morning yesterday and continued to have them throughout the day. It was so relieving to see her colon beginning to work. However, she also continued to throw up all day and feel awful. I was getting really concerned about 5pm and so the nurse put a call into the doctor. The resident stopped by and agreed that things just didn't sound right. So, they ordered an x-ray. The x-ray ended up showing a partial obstruction where they connected the two intestines. The doctor said that this isn't anything to be concerned about and that the intestine will widen as the swelling goes down. Today has been a super great day. The bowels have continued to move today and Kylie is just starting to recognize the sensation. You'd never think that a such a basic bodily function could get you so excited.

She's been up and walking lots today, strolling a baby from the playroom around the floor. She's been enjoying the fun gifts that have been brought up to her too. We have been very encouraged today. Thanks so much for keeping us in your thoughts and prayers. Our spirits have been lifted today.

Pictures from a few days ago:

Setback Today

We are all a little discouraged today. It all started with Kylie starting to throw up at about 7 am this morning. Her tummy is also a bit distended. That is a word we hate to hear after her whole ordeal last Nov-Dec. So far, doctors think that this is nothing more than her just needing to poop. The difference between Kylie yesterday and today is night and day. She was doing so so so good yesterday--ate very decently, made great conversation, and slept wonderfully through the night. Today, she isn't talking and just acts like she feels awful. She doesn't want to leave her bed. It has been an incredibly long day so far. Here's our prayer request: please pray that Kylie would poop and that this would be the extent of the problem.

Good Progress

Kylie has had a really good day today. Kaycee stayed with her for most of the day while I went home to get some sleep, pack a few more items, and do a couple of errands.

Dr. Abdessalam took her off her morphine since she was at such a low dose anyway. She seems to be doing awesome on the tylenol with codine and another drug. Now that she is off the morphine, we have freedom! We can leave the floor to go down to the lobby, cafeteria, outside on 2nd floor. It is so nice. Kylie also has permission to drink anything she wants and was encouraged to start eating a little bit (which she has no desire to do yet). She has been talking much more today which is also encouraging. The next big thing the doctors are waiting for is for her to start pooping. This is our big prayer request too. She has no memory of what it feels like since it has been just about a year since her ileostomy. Please pray that we will get results quickly and that it won't be too painful with the 3 incisions on her abdomen. I think that this will be her ticket home.

Opa, Oma, and Carson came up to visit tonight. It was fun to see all of them. We sure miss our little man, but he is doing great. He gets to see his cousins and play with them daily since they live right up the hill from Opa and Oma. I honestly don't think he misses Kaycee and I much :) He's having too much fun.

Thanks for keeping all of us in your prayers.

Emergency Surgery Last Night

It seems that the excitement never ends around here. The surgery that was scheduled for Monday became an emergency surgery last night. We knew that Kylie was at a high risk of prolapsing again. However, Kaycee and I worked hard this week to keep her somewhat calm--no activities that would push the intestine out. Every time she started to cry real hard or have a fit, we had to remind her to settle down so that she wouldn't push her stoma out.

Last night after we had eaten supper, Kylie told me she was going to go potty. She has just started to like closing the bathroom door. Well, last night, I heard her lock the door which she has never done before. Next thing we know, she is locked in the bathroom and absolutely hysterical. I ran outside to try to talk to her through the window and walk her through unlocking the door. She could not calm down enough to listen to me at all. Next thing we know, we are sending Carson through the tiny window to go and unlock the door for Kylie. Thankfully, he knew exactly what to do! But the force of her crying made her prolapse. She started turning pale almost right away and wanted to lay down.

We quickly packed a few things and took off for Children's. We arrived at about 7:15. Dr. Cusick was the ped. surgeon on call. He tried to push the approximate 4 inches of intestine back in as they had been successful in doing last Friday. However, she was really fighting it this time and very uncomfortable. Dr. Cusick decided that it would be best just to take her to surgery and reconnect her instead of waiting until Monday. He put a call into Dr. Abdessalam, the surgeon who was off last night but has done almost all of her previous operations just to let him know what was happening. Out of the kindness of his heart, he offered to come in and help Dr. Cusick. We were overwhelmed with his generosity. So, together, the two of them reconnected Kylie's small intestine to her large intestine, removed her appendix, and did a scar revision on her old stoma site. Again, we stand amazed at how the Lord worked out every detail! The surgery went wonderfully. She went back about 9:15pm and the surgeons came out at 11pm saying that they were done.

Kylie had a good night and has been very comfortable this morning so far. She is on a morphine drip to keep her comfy. They already want us to get her up today and help her walk around the room. We just requested a wagon so that we can begin with helping her sit up and get her out for a little ride here soon.

Change in Plans~Surgery on Monday!

Many of you know that we were supposed to leave for Disney World on Monday. Well, we have had some things happen in the past week that have changed our plans. We are disappointed about postponing our trip, but feel very at peace that this is what we are to do. Last Friday night, my mom was watching Carson and Kylie while Kaycee and I went out to celebrate our 8th anniversary. After we had finished eating, I got a call from my mom saying that Kylie's intestine had started to prolapse. We seriously could not believe it. We rushed over to her house to check things out, and sure enough, it had. So, on to Children's ER. Thankfully, the surgeon was able to push the approximate two inches of intestine back in right there in the ER. There was no guarantee that this wouldn't happen again. After consulting doctors and after much discussion, we decided that it would be too risky to travel down to FL for a week. We knew in our hearts that we just needed to get her reconnection surgery done. We are planning to reschedule our trip to FL in the spring due to my risk of pre-term labor. So, Kylie is going into surgery on Monday, September 21 at 1:00pm. They will be reconnecting her intestines, removing her appendix, and doing a scar revision on her old stoma scar. This surgery is the most risky surgery she will have had since there cannot be any leakage where the intestines are reconnected. If leakage occurs, Dr. Abdessalam will have no choice but to do another temporary ileostomy. We were told to expect her stay to be about one week. We would really really appreciate your prayers for Kylie. She still has no idea about what's ahead. I think we'll start preparing her this weekend. We'll keep all of you posted.

Back Home

We are so thankful to be back home and are continuing to reflect on the Lord's goodness in our lives. Our entire trip could not have gone any smoother--all the way from catching our flights to Kylie's testing and hospital stay. We continue to stand amazed at the completely normal test results and are so thankful and grateful. If all of her intestinal problems have been due to immaturity of the colon which she has supposedly grown out of and if her entire large intestine can remain...all I can say is what a miracle of God this is!

We were very impressed with our stay and Kylie's care at Nationwide Children's Hospital. We were treated wonderfully. Kaycee and I were so amazed at the size of the hospital. It was probably three times the size of Omaha Children's and they are continuing to expand. A 12-story addition is currently in progress. It's amazing.

One of Kylie's favorite things about her stay was the hospital's rooftop playground. We felt it was very therapeutic for her and it was super neat. I've posted just a few more pictures from our time there.

Just yesterday, I put a call in to pediatric surgery (here in Omaha) to get her reconnection surgery scheduled. It is scheduled for Wednesday, October 14 at 10am. We will have a clinic visit next week with Dr. Abdessalam. It will be really interesting to hear what he thinks of these test results.

Test Results

Kylie had the second part of her test this morning beginning at about 8:30am. She was given some Versed to help calm her. For this test, they placed a small tube in her bottom. Attached to the end of the tube was a tiny balloon. The balloon was filled with small amounts of air to measure how her muscles and nerves were working. It was extremely important that she be absolutely still for this test and she was 100% cooperative. We were so incredibly thankful. Obviously, since we've come this far, we want as accurate test results as possible. Today was much more uncomfortable for her than yesterday but I would say they had all the information they needed by 9:00-9:15. Other than being a little loopy from the medicine, she was doing great and they sent her back up to her room.

Dr. Punati, her motility doctor, came up to her hospital room about two hours following the test to review all of the study results with us. She first of all said that Kylie was 100% cooperative for both tests and they got very accurate information. Secondly, she said that they had very good news. For the motility test, they were able to test 80% of her colon, which is great. Secondly, she said that all the results showed completely normal strength and sensation throughout her entire colon--absolutely nothing concerning or abnormal. For this morning's test, the anorectoal manometry, again--an absolutely normal sphincter muscle. The test revealed nothing abnormal. These were not the test results that we were expecting, obviously! I was getting a little distressed. So, if there is no motility problem, what is the problem?? Why has she dealt with severe constipation ever since birth and struggled with severe stomach distension since she was a baby? All which led us to her terrible c-diff infection and the chaos of the past year. Dr. Punati believes that Kylie had a very immature colon. She said that she thinks Kylie dealt with what she called some "allergies". By "allergies" she was not referring to a milk allergy or a wheat allergy, but rather as she explained it, "an immature colon". She says that children outgrow this immaturity and she believes that Kylie is ready to be reconnected. Dr. Punati thinks that Kylie will have no problems. This is such good news and definitely not the news we were expecting. I think it makes us a little nervous. We just don't want to end up back where we started. It is hard to imagine that she could have out-grown this immaturity within a year. It would be so incredibly wonderful if this was the problem. So, that's what we found out today.

In less than a month, we are heading to Disney World thanks to the Make-A Wish Foundation!! We are so excited. So, we will plan to have her reconnection surgery after we get back from Florida. I think that we have decided it would work best towards the middle of October.

Well, we are all back here relaxing at the Ronald McDonald House. Our plane leaves at 3:00 tomorrow afternoon. Wish it was sooner, but we'll just hang out until then.

Kaycee holding Kylie during her motility test

A picture of the machine used to do her motility testing

Kylie with her new teddy bear after her test this morning

Motility Test

Today has been a good day and Kylie did great. I would have had this posted sooner, but somehow I lost my complete update earlier. I will give you an idea of how our day progressed today. At about 9am this morning, radiology came to get Kylie from her hospital room and took her down for the placement of the motility catheter. The motility catheter is a flexible plastic tube that was placed in her colon. She was sedated for this procedure which took about 30 minutes or so. Following the placement of the catheter, we were walked down to the motility clinic. We were placed in a special motility testing room which we spent most of the day in. The nurse hooked Kylie's catheter up to a special machine with a computer. The catheter had holes at regular spaces that measured the pressure in different areas of her colon with water. They wanted Kylie's sedation to wear off so that she would be awake for the remainder of the study. So, after about two hours, she began to wake up. And by three hours into the study, they wanted to observe the contractions of her colon by having her eat lunch. I found it so interesting that even though her large intestine is not hooked up, a full stomach still produces contractions. About an hour after lunch, they gave her some medicine through her catheter so that they could watch the contractions with the medicine.

The great part about the test today is that Kylie was not confined to her bed for the test. We were able to hold her and she was able to sit up and play. We did have to keep her as still as possible, but it was such a blessing that she didn't have to lay down for the entire test. The test itself was not at all painful. However, she experienced a small amount of cramping following the medicine that was given through the catheter.

At about 3:00 this afternoon, the motility doctor came into the room and said that they had enough information to complete this part of the study. Originally, we were told the test would last until 5:00. So, we were thrilled to be done 2 hours earlier than expected.

They will complete the study tomorrow morning with a test called anorectal manometry. She will most likely be sedated for this test which can last up to 2 hours or so. Following this test, the doctor will sit down with us and present the results and all of the findings of the motility study.

Thank you so much for upholding Kylie in prayer today!

We've Arrived!

Hello everyone! We've made it here to Columbus, OH. We left Omaha yesterday (Sunday) at 5:45am. From Omaha, we flew to Houston and from Houston to Columbus. Kylie was so excited for her first airplane ride. She was a great little traveler. We were so thankful that we had no issues getting through security with Kylie's medical supplies. And all of our flights were on time. It couldn't have been a smoother day. When we arrived in Columbus around 3pm, we took a taxi to the Ronald McDonald House where we are staying. It is located right across the street from the hospital. We feel so blessed to have a room here. It is a newly built, beautiful facility. Obviously, we will spend most of our time here at the hospital with Kylie. One of us will stay with her for the night while the other goes back to the hospitality house.

It has been a smooth and relaxing morning so far. We had to be to the hospital at 10am for admission. We are on a special gastro-intestinal floor. The GI nurse practitioner came in shortly after we arrived in our room talked to us about Kylie's history. Due to her ileostomy, there isn't much preparation before her motility test tomorrow. Her ileostomy makes it so that she does not need an ng tube or any sort of a clean-out. What a huge relief it was to know this. She is on a clear liquid diet today and this evening, they will start her IV fluids--quite simple.

Thank you so much for praying for us. We have truly felt the Lord's hand through this trip. It is amazing. We'll continue to keep you posted.

Dates for Going to Ohio!

We have just recently been contacted with our dates for Kylie's motility testing in Columbus, OH....August 23-27. We have been waiting for months to hear and so it finally good to be able to do some planning. We will fly out of Omaha on Sunday, August 23. On Monday the 24th, Kylie will be admitted to the hospital in the morning. Doctors will review her history and will get her all prepped for the motility testing which will take place on Tuesday the 25th. According to the packet of information I received, the motility testing can take up to 8 hours (she will be sedated). On Wednesday morning, the 26th, another shorter test will be performed called anorectal manometry. Following this test, Kylie will spend the rest of the day resting and recovering. Depending on how she is doing they may or may not keep her until Thursday. We will then fly back to Omaha late in the day on Thursday the 27th.

We plan to take our computer so we can keep everyone posted on how the week progresses. We are glad to be moving forward with getting Kylie more help and hopefully by the end of the year following one more surgery here in Omaha, she will be able to get rid of her ileostomy.

Dismissed Late Last Night

Kylie had an incredible day yesterday. We were given permission to get her off the floor and I am amazed how that encouraged and inspired her. First of all, we took her down to the cafeteria to get some breakfast in her pink car. It was such a beautiful morning that we ate out on the patio. Then we rode around the lobby area and had her try to walk for the first time. She was quite hesitant but walked hunched over for a short distance. She was so cute--she knew that she was walking funny and so she said, "I walk like a duck". Kaycee and I got a good laugh out of that one. It was so incredibly refreshing to get her out of her room and to see her spirit lifted.

Late morning, they completely took her off of her morphine and put her on Tylenol with codine. They also put her on a regular diet, so she ate just a bit for lunch. She had a great three-hour nap in the afternoon which she desperately needed.

That evening, Kaycee's parents and Carson came to visit. We took her out again and wow, was she ready to get movin'. She wanted to walk everywhere all by herself--a huge change from that morning. Kaycee was the one who said, "I think she's ready to go home". With her great improvements, I was sure they would be fine with sending her home on Monday, but I wasn't even thinking about anytime before then. Well, we asked and they okayed it. The change in her personality, appetite, and physical strength was unbelievable from Saturday to Sunday. The Lord is so good. What evidence he hears our prayers! We were home by a little after 10pm last night. I was so glad that Kaycee could help us move back home.

We all slept great last night. It was so so good to be back in our own beds. So far, Kylie has had a wonderful morning. She's been up and around and playing. She's so happy to be home! She just asked to go up to bed and have a nap, so I just tucked her in. I hope that she will nap good today as she is so sleep deprived. Carson is still with Kaycee's parents, so I will just be playing catch-up today around the house and we'll probably go and get him tonight.

Thank you to all of you again for supporting us in another one of our crisis! Oh how the Lord has blessed us with such wonderful friends and family!

Saturday

Kaycee stayed with Kylie last night so that I could get a good night's rest. This morning when I arrived, we got Kylie out of bed for the first time and took her for a ride in the pink car. She did very well but was ready to lay back down after four times around on the floor. She just couldn't seem to get comfortable after we got her tucked back in bed, so they upped her morpine just a bit which has really seemed to calm her down. As she lays here, she is so expressionless and untalkative. The only time she really talks is if I ask her a specific question. Of course these behaviors remind me of the difficult days we endured in December and January. These are such long days in the room. I just popped in "Beauty and the Beast", so hopefully that will entertain her for a little while. I hope to get her up again in a while and take her on another car ride. They aren't allowing her to eat anything as of yet. She can have ice chips and water, but hasn't even been interested in those. I anticipate a few more days here yet.

We haven't heard anything on the dates for going to Ohio yet. I have been in contact with the nurse coordinator there and we should hopefully know something in the next couple of weeks or so. All of Kylie's records were supposed to have been sent to OH in January. However, I found out in March that they still had not received them. So, they arrived just a month ago or so. We are getting very anxious to get this motility testing done so that we can get rid of this ileostomy. The ileostomy was absolutely necessary and it has done wonderful things for her. However, it has also caused more than enough trouble. We'll let you know when we hear on the dates.

Kylie's highly entertained with a new toy given to her

Time for an x-ray baby

Taking baby's temperature

Back in the Hospital

It has been so long since I've updated. For days now, I've been intending to tell all of you how great Kylie's been doing. Well, that all changed last night. Around 7 pm or so, Kylie's intestine prolapsed. I rushed her into Children's ER while Kaycee stayed at home with Carson. By the time we arrived, her intestine had probably come out about 6 inches. Both operating rooms were busy when we arrived, so we did have to wait a couple of hours. Around, 10:30 or 11pm, Kylie was back in surgery. My mom sat with me during Kylie's two-hour surgery. This surgery was the most involved of any of her surgeries so far. The surgeon actually closed up her old stoma on her left side and moved it to her right side. A new location would help ensure that this would not happen again. Her past surgeries have been done lariscopically. However, he needed to completely open her up last night, so she has about a 3-inch mid-line incision--ouch! The surgeon did have to remove the 6 inch segment of small intestine that prolapsed due to the blood supply that was cut off. He is very confident that in no way should this affect the function of her small intestine. Thank you Lord!

She had a really good night as she is on a morphine drip for pain control. As of right now, she is still doing fairly well. I can tell she is a little more uncomfortable. She can hardly move due to the incision. Poor thing! She doesn't even want me to hold her.

Again, we would so appreciate your prayers for Kylie's comfort and for a speedy recovery. It is hard to fathom that we are back here after months of doing so well. But regardless of our circumstances, we know that the Lord is in control and that Kylie is in His hands. Again, our trust is in Him.

Home

We got home about 7:00 last evening. Kylie slept wonderfully through the night and ate a great breakfast this morning. She's been having really good output, so everything appears to be working properly. She is playing now and seems to be feeling great. It was truly amazing to see her quick turn-around. She was so so sick. And then to see her perk up so quickly after yesterday's procedure. We are so grateful to the Lord for watching over Kylie.

Good Improvement

Kylie has had a busy day today. She had an x-ray early this morning. That x-ray looked even worse than last night's. Late morning, she had another procedure to see where the obstruction was. They injected a dye into her stoma to find the location of the obstruction. Later, Kylie was sedated right here in her room here for a short procedure. The pediatric surgeon inserted some metal rods into her stoma to dialate the intestine. Dr. Abdessalam thought that some scaring of the intestine had possibly caused it to constrict. Kylie seems to be feeling much better already. She's been sleeping the afternoon away. However, it sounds like we might get out of here tonight! I hope to get a better idea of how she feels when she wakes up.

Please Pray

It is unbelievable how fast things can change around here. Kylie was admitted to Children's this evening with an obstruction. She has been incredibly sick for the past two days. I totally thought she had a bad case of the stomach flu until today when she wasn't getting any better. They put an ng tube in, so your prayers for her comfort would be greatly appreciated. Kaycee is staying with her tonight. I am planning to be up at the hospital bright and early for doctors' rounds. Thank you for uplifting our family in prayer tonight.

Happy Valentine's Day

Happy Valentine's Day! I know it has been a while since I've updated all of you. Kylie is doing just great! We are so thankful that we've been able to stay away from the hospital for over a month now. Over the past month, Kaycee and I have observed the return of Kylie's confidence and sense of security. It is so neat to see the Kylie that we used to know. She's totally back to her normal self and it is so fun to watch her play with her dollies, dress up, sing, help Carson. We have SO much to be thankful for. And she's doing great with changing the tummy bag. Yeah!! Thank you for praying specifically for that. We'll continue to keep you posted.

"The Tummy Bag"

After Kylie’s ileostomy surgery, I knew I had to come up with a way to explain to a three year old what the new and unfamiliar bag was that was stuck to her abdomen. I wanted to do the best I could to make the experience as positive as possible. My goal was to come up with a simple, friendly way to talk about her ileostomy. So, I decided that we would call the new addition “the tummy bag”. Kylie has adjusted very well to the bag and we talk about how it is helping her to get better. However, she is still very scared of her stoma. She just screams and shakes when she sees it. The bag covers it nicely so that she can hardly see it most of the time. However, when the bag is off, I have to make efforts to cover it up and distract her. We change out the entire bag about every 2-3 days. Let me tell you, I dread those days. I almost have to have Kaycee here to help me because she fights it just terribly. The worst part of it is peeling the old one off. It is so incredibly sticky. Hopefully within time, she will think nothing of it.

Last night, we had another scare…I was worried that she had another partial obstruction. However, things turned out to be okay. Her appetite and ostomy output both picked up. I seriously never thought I’d be so happy to see poop. Thank you dear Lord for watching over Kylie!

A Good Morning

Kylie is doing great this morning. She is having good output from her ileostomy. What wonderful reassurance that is to me that everything is working properly. Emotionally, we continue to see such good things happening. Kylie's personality and obedience is all coming back. When I think back to how things were only 2-3 weeks ago, I am utterly amazed at what an awesome God we have who hears our prayers. Three weeks ago, I was almost ready to lose my mind. I was honestly beginning to wonder if Kylie's issues were going to be permanent. It was very scary. I seriously felt like I had two special-needs children. As most of you know, Carson was born with microcephaly and to describe it simply, his brain is not growing (although he is doing extremely well for his diagnosis). We love him to pieces and he is so much fun. However, put the two of them together and it was chaotic. With the Kylie’s behavioral issues, she was more than a handful. I could not take my eyes off of her for more than one minute or she was destroying something. I could actually trust Carson way more than I could Kylie. It is usually the opposite. Here’s a glimpse of how crazy life was here one afternoon…Kylie found gum in Kaycee’s desk and started stuffing it into her mouth. Next minute, she’s yanking the return address labels out of the dispenser. Then she’s in the kitchen completely cleaning out one of the cabinets and throwing everything on the floor, then she’s unwrapping gifts under the tree, then she’s into my cleaning supplies, then she’s taking ornaments off the tree, and then I finally see her sitting quietly in the family room by her toys. Oh, what a relief, she’s finally playing so nicely—so I think. Little did I know, she was unraveling the end of her ileostomy bag and draining the contents onto our nice, only three year old carpet. I was nearly ready to lose it. It all really happened this fast, one thing right after another. I’d be cleaning up one mess and she’d be working on another.

Life is much different in our household today! Kylie can be trusted again and I have my little helper back. We have SO much to be thankful for! Thank you again for praying for our family. I know that there are so many of you praying, many of you whom I do not know or have not met. Thank you from the bottom of our hearts.

Thankful To Be Home

We just made it home a little bit ago. I sure wish I could have updated all of you sooner, but I didn't have time to grab my computer. We sat in the ER last night until about 3:00 am. The x-ray of her abdomen looked "terrible" last night, as were the words of her doctor. The pediatric surgeon said that she looked great for as bad as the x-ray looked. They started her up on IV fluids there in the ER and then admitted her. There was talk of putting an ng tube in. However, thankfully they opted not to. Thank you Lord! Kylie and I slept for about three hours until morning rounds began. This morning, her x-ray was unbelievably better. They put her back on a regular diet and told us that as long as she was doing well, they would let us go home today. Dr. Abdessalam was very honest with us and told us that he couldn't explain what happened or give us a reason as to why this happened. Apparently, there must have been some sort of an obstruction that resolved itself. We are so thankful for our very brief stay. However, I am definitely struggling with fears of this happening again. We will continue to rest in the hands of our Almighty God.

On Our Way to ER

Please pray for Kylie right now. We believe she may have an obstruction. She's had very little out of her ileostomy today and she's complained of a tummy ache. I started suspecting something this evening. She woke up just a bit ago throwing up. My sister, Kelsey is on her way to stay with Carson. We're headed to Children's ER right now.

We're Home Once Again!

We are SO thankful to be home!! I wish I could have posted sooner, but it's been a little crazy. On Tuesday night, I had a really bad headache and so Kaycee told me to take Carson home and get a good night's rest while he stayed with Kylie. Unfortunately, that headache turned into the stomach flu. I felt so awful on Wednesday that I couldn't even take care of Carson, so Kaycee's parents graciously took Carson for the day. Kylie was dismissed about noon on Wednesday. My mom drove Kaycee and Kylie home since I had driven the van home the night before. I don't know what we would do without our families! I am feeling much better today and Kylie's doing GREAT! We are SO pleased with her progress. Emotionally and behaviorally, we have seen such improvements. She is such a different little girl now than she was right before her second surgery. We can only give credit to our Heavenly Father! There is no doubt, we will still have some re-training, but not nearly to the extent that I thought we might. I hope to post some more pictures soon and will continue to keep all of you updated, especially as we approach the motility testing in Ohio towards the end of the summer.