Better Days, Thank You's....and Another Scare

Since my last post things have seemed easier to handle. Caden has just been the sweetest little guy full of smiles and love. We were, also, able to take a family trip up to Big Bear to celebrate Natalie's 9th birthday, and it was a much needed getaway. It was great to do something we have always loved to do and realize it is possible to load our crazy family of 6 and head up to the mountains just as we used to do. Caden was the best traveler sleeping the whole way up and the whole way back home. We got to enjoy the beautiful weather and spend time relaxing as a family. It went better than I had expected. I can't wait for our next trip up!

I also wanted to thank so many wonderful people for their kind comments, emails, letters and phone calls. It helped me get through a rough time more than you can ever know. I wish I could get back to each and every one of you to personally thank you; I will try. I can't tell you how your inspiring and caring words gives me the strength to continue on this uncertain journey. Every message is read over and over and I go back to these notes when I need a little boost. You are all amazing and keep me afloat in these turbulent waters. I can never express enough how much your words mean to me. Thank you from the bottom of my heart. Your messages are like hands catching me before I hit the ground.

Caden has continued to grow and flourish. Although his future is very uncertain, he continues to amaze me with his endearing personality and strength. He face just lights up when we smile and talk with him. I know he can't hear us, but I think he loves all of our expressions. We took him to see a geneticists that saw him in the NICU and she was very impressed with how far he has come. She reminded me of all he has been through with surgeries, intubation, extubation, tests, and more. She said it was tough to see us going through all of that. In those moments I truly realize how far we have come and feel blessed to be where we are now; together as a family.

Just as things seemed to be turning a nice corner we had quite a scare. Tuesday night while getting ready for bed Jenna choked on a quarter she was playing with. I had just told her to put the quarter away and moments later she was completely choking. I started giving her the Heimlich maneuver and Chad called 911. She managed to pass it through her esophagus and into her stomach. We spent 4 hours at the E.R. taking x-rays and are now waiting for the quarter to "pass." If this doesn't occur soon she may need to have it removed. We are praying it passes because I really am not in the mood for any more surgeries!

Mary

P.S. I just had to add that we found it funny that the picture of Caden holding a little beverage is actually a picture of C.L. holding C.L. holding a C.L.(Chad Lukkes holding Caden Lukkes holding a Coors Lite.) Please do not worry, Caden never had a sip!

A Mother's Heart....

Before Caden was born I was fortunate to only know how to parent "typical" children. I would go to their checkups eager to brag about all the milestones they had reached and walk away proud as punch that my children were doing so well. I would call all the grandparents to say that so and so was in the "90th percentile for height" or the doctor was so impressed at how many words she could say. I have now entered a whole new world of parenting.

Today I brought Caden in for one of his check-ups. Instead of walking out of there eager to call everyone to say how great he is doing I walked out of the doctor's office in tears with a referral to a neurologist. Caden is in the 5th percentile for height, weight, and head circumference. He is also a little bit rigid in some of his joints which could be an indicator of other problems. I thought we had covered about every aspect of Caden's health that was possible; we are now needing to see a neurologist. I just feel a bit defeated today. It seems just after we feel things are settling down something else arises and our world turns upside down again.

Being a mother has always been the greatest source of joy in my life. I am now experiencing some of the deepest pain I think a mother can experience. Being unsure of what is going on with your child and seeing your child in pain is extremely difficult. Caden seems like such a mystery sometimes. I never realized how"typical" my other children were until I had Caden. The uncertainty of all of this is really taking a toll. Where will all of this lead to? What does Caden's future look like? I guess in reality I really don't even know the answers to those questions for my other children.

For now, I will continue to pray, take things one day at a time, and be thankful for all the many blessings that I DO have. I will try not to question too much, and I will give Caden all the love in this mother's heart.

Mary

Recovery.......for all of us

Recovery has been quite a roller coaster for all of us. After we brought Caden home from the hospital after his surgery I think I was on a post surgery "high" for awhile and then I kind of crashed. Not only was it tough to see him in pain and having trouble breathing because his nose was plugged, but I realized I was so focused on the surgery for such a long time that it was a great distraction from all of Caden's other issues. Once his surgery was finished I was so happy that he made it through and looked so great, and then it hit me that this was not the end of the road. See, while I was pregnant with Caden we only knew he had the cleft lip and palate. We were pretty certain there were not any other issues. I kept dreaming of the day Caden would get to have his surgery and we could sort of move forward with our lives. I knew a cleft lip and palate were always going to be an ongoing issue with repeat surgeries, orthodontia, and speech therapy, but the surgeries were the big deals. It suddenly struck me after Caden's surgery when we were at the plastic surgeon's office and surrounded by other kids with repaired cleft lips that Caden has other things that can't just be "fixed" by surgery.

When I was pregnant I was devastated that Caden was going to have a cleft lip and now I wish that was all we were dealing with. It makes his encompassing diagnosis so real now. The lip repair was just one of the many things we have to walk through with our baby. Don't get me wrong, I am ecstatic with the outcome and so relieved that the surgery is over. It definitely is a weight off of our shoulders to have this surgery behind us and that he did so well, but we are still on an uphill battle with our little guy. The doctors appointments, therapies, and questions continue.

The good news is Caden is as happy as a clam these days. His nose stints are off and his arms no longer have to be in restraints so he is a free man! He rolled over for the first time last weekend, too, and we were so thrilled! He is just a little love and he probably thinks he is the cat's meow because everyone is always smiling and kissing on him! His personality is really coming out, too.

The biggest battle for us right now is to try and get his reflux to improve and work on consolidating his feeding so that he is not hooked up to the feeding pump 24 hours a day. It would be great for all of us if he was able to bolus feed someday. That way he could eat 3 or 4 times a day at a half hour each time. This is our next hurdle. He just doesn't seem to tolerate much in his stomach at any given time. He is also refluxing a lot still, and it is hard to watch him choke and gag so much. We are praying for something to change in this department.

On to other news, by the pictures I am sure you can see we added a new member to our family. Snowflake, the bunny, was given to Cara by the "pacifier fairy" Easter morning for giving up her pacifier and blanket. Snowflake has been a lot of fun for the girls. She really likes to be held and Cara is so proud to have her very own pet. If that bunny could only wear a diaper when she hops around it would make things a bit easier. I forgot how much pooping rabbits do!

I hope everyone had a great Easter holiday. Thanks for all the prayers for Caden during his surgery. Also, thank you to the many people that helped with meals and the kids, and dropped of goodies. You people are amazingly thoughtful.

Mary

Here's..........Caden!

So I have definitely not been keeping up with the blog as much as I would like to, but, as most of you know, we are a tad busy over here! I am happy to report that Caden made it through his surgery very well, and is recovering nicely considering all that he has gone through. Chad and I on the other hand are pretty darn exhausted!

As you can see our little guy has changed a lot. I have to admit; I had some mixed emotions when I first saw him after his surgery. Let me back up a bit though and give you all the run down. Chad, Caden and I had to go to CHLA on Monday morning by 9:00a.m. for a pre-op appointment. It was supposed to last about and hour to an hour and a half, but we ended up being there for nearly four hours. Then we had to race back to Fullerton because I had parent/teacher conferences at the girls' school. After that, Chad, Caden and I drove back to L.A. to spend the night at a hotel near the hospital because we had to check into the hospital at 5:30a.m. That night before the surgery Caden started coughing more than usual. I started to worry that he may have a cold, and then I started to freak out that after all the pre-op craziness and tests that maybe he would not be able to have the surgery. The next morning when we got to the hospital we told the nurse practitioner that was examining him that he was coughing more than usual the night before and we were wondering if this could affect the surgery. After speaking with the anesthesiologist and the surgeons it was agreed that we would go ahead and begin the first part of his procedure which was a bronchoscopy by the ENT and she would determine if his airway looked clear and healthy enough to proceed with the rest of his operation. The fear was that if he had a cold brewing it would make matters worse to have him intubated for the surgery because the intubation irritates the airway and that irritation in combination with a cold would put him at risk for developing pneumonia. We went ahead and said our good-bye's and waited anxiously to hear if they were going to go ahead with the lip and nasal reconstruction. We were praying all would look fine because it took so much effort on every one's part to get to this place. Getting everything lined up was not easy, plus making sure the girls were taken care of. Well, about 30 minutes later the anesthesiologist came out to report that all looked well and they were going ahead with the whole surgery. We were relieved. We, then, nervously waited for another 3 hours until he was finished.

When the plastic surgeon brought us back to see him it was such a shock. He looked completely different! Our plastic surgeon did an amazing job! I couldn't believe I was looking at our Caden. I actually missed the old Caden for a bit because that was all we have known for the past 4 months. I had heard other families with children that had cleft lips repaired say they missed their babies "wide smile" and I suddenly realized exactly what they meant. After a few hours of looking at our new little guy I fell in love with his new look and I think it turned out beautiful! The full result won't be seen for awhile because of the swelling and nose stints, but already he looks adorable! I will always, though, have a special little spot in my heart for Caden's first big grins.

When the surgery was over we waited in recovery for about 7 hours until they could find us a room. When we finally got a room it was a little chaotic. Caden was miserable from the surgery, we had to share a room, and it was right next to the extremely noisy nurses station. I stayed the night at the hospital with Caden and Chad returned to the hotel because the hospital rule is only one parent can stay. That was one crazy night! I am definitely still recovering. Poor little guy was MISERABLE.

Now we are home and trying to keep him as comfortable as possible. He is really doing quite well. I am so proud of him. He has his little arms in restraints so that he can't pull at his face. He also some bloody drainage that he chokes on from time to time. Through all of this he is already showing off his new smaller smile! So sweet!

We hope and pray his recovery continues to improve for all of our sakes. I want to thank everyone for all of their prayers, good wishes, and help. I am continually heartened by what wonderful people fill our lives. It makes going through these hard times possible. We are so immensely blessed by our family and friends. I will never be able to thank all of you enough. Please know every kind word and deed is beyond appreciated and will never be forgotten.

Mary

P.S. I happened to run into my cousin, Sally, accidentally at the hospital. She works there as an anesthesiologist. Thank you, Sally, for looking after him and checking in with us!

It has been awhile.....

Things have been quite busy around here hence the lack of blog updates. The busyness has not been all medical things, though, so we are mixing the good in with the bad. Caden continues to thrive at home, and brings us so much joy with his sweet little ways. I am getting to know this new little guy more and more every day which makes life a bit easier. The one thing that hasn't changed, unfortunately, is his crazy nights. The lack of sleep is definitely taking a toll.

We did get an awesome night away 2 weekends ago when my mom, for a Valentine's Day gift, took all four kids (yes you read it right - ALL 4 KIDS) for a spend the night at her house. Chad and I were so excited to actually have a whole evening and morning to ourselves. We went to an early dinner and came home and were asleep before 9:00. It was quite the luxury. The next day Chad's parents watched Caden so we could spend some special time with the girls. We had a blast. We felt a little refueled after that nice weekend. We have also squeezed in a few date nights and I had a great girls night out. Having these breaks to look forward to helps me get through all of the doctor appointments and therapy sessions. This weekend we are going to the horse races for my Dad and Chad's birthdays. My grandparents are coming in from the desert to come along, too. Chad's parents will have Caden. It should be a lot of fun. If it weren't for the amazing help of our families I am not sure where we would be (mentally) at this point. I am grateful to God every single day that I am richly blessed with the most wonderful, compassionate, and selfless family. Thank you is so completely inadequate to describe how much I appreciate all that they do.

On to some updates about "Sweet Caden". We have an unofficial surgery date of March 23 for his lip repair. Some things need to be ironed out before it becomes official, but I am really excited to get this ball rolling in the right direction. As excited as I am for the surgery I am also very nervous. Today Caden had a minor surgical procedure of removing his g-tube and replacing it with a mickey button. He is still tube fed; it is just a different, more efficient contraption. Handing Caden over for this brief surgery was tough. It was also heartbreaking watching him get his little I.V. put in. The waiting was the worst. Mind you this was a 20 minute procedure. I do not know how I will manage waiting through a four hour major surgery. He is just so innocent and happy and has no idea of what is going on. It is hard to knowingly put your baby through these things, but it is all in his best interest. What I am excited about is to see what he will look like after the repair. He is already, in our eyes, just as cute as can be so I am anxious to see the results. The recovery could possibly be the most trying part of the whole ordeal because he has to be in arm restraints for two weeks in order for him not to pull all of the stitches out. The restraints are called "no no's" and they look like little casts. They basically keep his arms straight out at his sides preventing him from pulling at his lips. He loves to put his hands in his mouth so it is going to be rough.

Prior to getting this tentative date we met with a new ENT that we love. She is located near our plastic surgeon in the L.A. area. It is quite a drive but most definitely worth it. She was friendly, informative, kind, and answered all of the questions we could possibly think of. I felt at ease with her and I feel completely confidant that she will take great care of Caden. She will be putting tubes in Caden's ears during the lip repair operation. She will also be following Caden very closely with all of his hearing issues. Since we need be very involved with an ENT I am extremely happy we found someone like her. We left her office with big smiles on our faces knowing we wouldn't be back to the infamous other ENT.

Caden's therapy is going well, too. We are at CHOC twice a week for e-stim treatments. We love the therapists there making the sessions easy on Caden and I. The therapists are very gentle, kind, and informative. They really think Caden will benefit from the treatment and are impressed with how he is doing already. I get to sit in this huge swing and rock back and forth while he is getting his treatment. The swinging is supposed to relax Caden and it definitely works. It is pretty enjoyable for me, too!

Caden is now weighing in at 12 pounds 4 ounces and is growing well. He loves to bat at his little toys and coo at his sisters. We love watching all of his little milestones because they are true miracles in our eyes. Each day he is in my life I feel so blessed to have him here. Yes, it is very difficult, exhausting, ect., but he is such a little angel. I really feel he is an angel here on earth that is teaching me so much about life and about myself. His strength through all that he goes through inspires me. The road has been, and will be, rocky and long, but it is full of many enjoyable, breathtaking moments.

Mary

The Good and the Bad....

Caden, as the audiologist put it, was a "rock star" during his hearing test. The audiologist first checked for fluid in Caden's ears and he definitely has fluid. This is extremely common with cleft lip/palate babies. Then we were put into a dark little room with a rocking chair and he was hooked up to the ABR test. I had to get him to sleep before the test could begin and he knocked out in less than 5 minutes. He only woke up once during the entire test. We were able to complete the entire screening in that one visit. That was the good of it.

On to the bad of it; Caden has profound hearing loss in both ears. This was not a surprise to us. It isn't difficult to do an "at home test" for hearing. One such test I put my ipod's ear buds up to Caden's ear and cranked up the volume and he didn't respond at all. Another "at home test" was when Caden was sound a sleep in our room and I broke out singing very loudly and he didn't move a muscle (that time it was probably to his benefit that he has hearing loss). Even though this was no surprise it still was disappointing. I was hoping they would find that his hearing wasn't as bad as they had previously determined.

All hope is not lost. The next step is to clear the fluid from his ears most likely with tubes. After that, we will retest his hearing. Then he will be fitted for hearing aids. If the hearing aids do not help then we will look into cochlear implants. I really want to explore every avenue possible to have Caden hear. I am already starting to sign a little to him. I want to prepare him and us for the chance that he won't be able to hear. I really want him to hear our voices and I desperately want to hear his sweet little voice speaking to us. Sometimes I will have moments where I get so sad thinking he may never even hear his own name. It really chokes me up when I think about that or the fact I may never hear him say,"mommy." I never truly realized what beautiful gifts those were with the girls, and I won't ever take it for granted again (except maybe when they are screaming at me and each other:))

Well, next week we see our oh-so-friendly ENT, and we will be meeting with our plastic surgeon again. She has an ENT we will get to see as well. I am hoping we can connect better with this ENT and never have to go back to "Dr. Rock Personality". It would also be beneficial to work with the ENT our plastic surgeon uses because we could combine the ear tube surgery with his lip repair surgery.

I love the new pictures I took of Caden. His precious little personality is really coming out. He may not be able to hear, but he sure knows how to communicate with his big blue eyes. They just pull me in every time and I am full of joy and happiness in those moments.

Mary

Nervous, but Grateful....

Tomorrow morning will be Caden's repeat hearing test called an ABR. He needs to be asleep for this because they need to make sure he is not registering other sounds or that other sounds are not interfering with the test. He is not going under anesthesia; we just have to make sure he is tired enough by the time we get to the facility that he sleeps through the test. This should be very interesting. The test will begin at 8:00 in the morning. They would like him to be awake for at least 3 hours prior to the test so that he is sleepy enough by the time we get there. So, if you do the math that means he needs to be up at 5:00a.m. He does get up around that time some mornings, but usually conks right back to sleep. I am not sure what we can do to keep a tired, hard of hearing, two-month-old awake for three hours.

I just want to ask for prayers and good thoughts that there will be some hearing seen on this test. How the test is administered is that they attach electro-nodes to Caden's head that will actually pick up on his brain waves. They will be looking for specific spikes of brain activity in response to the sound that they put up to his ears. The test lasts for about an hour. If Caden should wake up prior to the end of the test then we have to come back and repeat this procedure. Oh, Caden, please be very, very sleepy tomorrow.

Whatever the tests results may be I am so proud of how hard Caden has worked in the short month that he has been home from the NICU. He struggles every day to keep his airway clear and this has been especially hard with his cold. He doesn't get the luxury of breastfeeding or any oral feedings that most babies have. He wants to suck so badly, but because of his cleft lip he can't hold a pacifier in his mouth. In times where I get discouraged about things I have to remind myself how far we have come since those early days in the NICU. I posted a picture of Caden right after his heart surgery. He looks like a mess. I am so happy he is home with his family now. Whether he can hear or not and to what ability he may have hearing; I am just very thankful that we have our son. He has really taught me so much about life and love in his little time here on Earth. I certainly would like things to be different for his sake, but I am grateful for what I have gained from having him in my life.

Mary