Can You Hear Me Now?

I'm so thankful that this week is coming to an end. It has been way too busy and miserably hot! We had a sleep study done the other night and it did NOT go well. I'll have to write about that in another post because I think we are both still trying to recover. Camden had an ENT appointment on Tuesday to do a hearing screen and check for fluid in his ears. I definitely was ready for this appointment because I want to know if there is any hearing loss so we can get a plan going. Hearing is so important for speech development and a lot of kiddos with Ds tend to have some degree of hearing impairment. They first checked for fluid and it turns out that his right ear is clear, but his left does have fluid. He did end up failing the hearing screen on the left ear and passed on the right. Dr. V said he would need tubes but wants to wait until he gets a little bigger. He has such tiny ear canals that you can't even see the eardrum. He thinks the failed hearing screen is due to the fluid, but wants to do an ABR (auditory brainstem response) to see for sure. This will be able to determine if there is any true hearing loss and to what degree if there is. You have to be really still or sleeping in order for the test to take place. Since it would be hard to time the test with an infant's sleep and there is no gurantee they would stay asleep, they are usually sedated. We don't want to have to sedate Camden twice, so he will get tubes and have an ABR done at the same time. We go back in two months to recheck the fluid and make a definite plan. I'm just ready to get this taken care of as soon as we can because hearing is so incredibly important.

 Carter has been so good at all of these appointments.

We stopped the solid food feedings since we have had so much weight gain trouble. Formula is more calorie-dense so we wanted to try increasing his milk intake and didn't want him getting full on solid foods. Well, that didn't work. He just won't drink more than 4 ounces at a time. Sigh. After having a couple of conversations with my cyber sisters, several of them suggested avocados. They are high in calories and have tons of nutrients. Carter never really liked them so I never fed them to him. I made a banana and avocado purée and Camden seems to really like it. I'm hoping this will help because I don't know what to do anymore. 

This time of year is also fireworks time. We have a small firework's business that we open during the 4th of July and New Year' Eve. It's open for ten days only and those ten days are scorching hot. Since I have two little ones now, I'm not out there that much. On July 4th though we have everyone there working because it is crazy busy. I'm talking 10-20 customers there at a time nonstop type of busy. It's exhausting but it's worth it. We are blessed to have an amazing husband and wife team that work the stand those ten days. They have been with us for several years now and they look forward to it as much as we do. They are the ones out in that 100-104 degree heat everyday working their booties off! Thank you Steve and Diana! You guys are amazing!

Family

"I am sure this must be difficult because you have to get a new idea of what your life with Camden is going to be like but I know it's going to be wonderful!"

"Diane, what a joyous adventure you all are beginning!"

"ALL of your boys are lucky to have you!! Camden will be loved just as we love our own!"

"Camden will show you a deeper love than you ever expected!"

"Diane, get ready for how blessed your life will be!"

"Diane, clearly you were picked to mother these two special boys. Lucky you...lucky them."

"Children come into this world in different shapes and sizes. They are pure with hearts of gold. we love them for who they are and each in a different way."

"God challenges us to step out of our comfort zones. Camden is a wonderful addition to your family. Be prepared to learn so many lessons from this little man. We love you and will continue to support you in whatever way we can." - Jodie

These are just a handful of statements that I pulled from the messages that were sent to me from my co-workers after I told them Camden has Ds. I literally could not put them all on here because you would be reading forever. The outpouring of love and support was indescribable. There were so many words of comfort and offers to help. Even people I hardly speak to, only because I do not see you much, sent messages of love. I can't even thank you all enough for how much your words and help meant to me. I am truly touched. You all are not just people I work with, you are my family. Family is not just blood, it's a number of things. We bicker, argue, and drive each other nuts like family members do. We also laugh and cry together like family members do. I can count on you all for love and support when I need it. Our family has come together many times over the last several years, even before I came along. We have celebrated births and weddings together. We have also mourned together during tragic and difficult times. Today was one of those days when we all united and banded together to say goodbye to one of our own. I sat in the very last row of the sanctuary so I got to see each of you walk out before me. As you all started to go by, I started to cry again. I cried because I was reminded once again that we truly have something special here. I felt your hearts bursting with love and kindness. I also cried because I saw the look of pain and sorrow on your faces. As I watched the tears roll off of all of  your cheeks, my heart ached. It ached because you all were hurting. We were all hurting. I have worked many places before I came to Cook, and I have never experienced anything close to what I have here. I'm so blessed to be a part of this amazing family. I know it's been said a lot lately, but I love you all.

There were still so many things I wanted to say to Jodie and I thought I had one more day...but I didn't. Jodie went through more in the last two years than anyone will every go through or deserves to. She lost her sweet daughter Lilly under unfortunate circumstances a couple of years ago. Around a year later she was diagnosed with cancer. "It's not fair" we all said. Why does one person have to bear so much? Why does one person have to go through so much pain? Why? One of the things I learned was that it's not my place to ask God why. Maybe it was to teach us something. After we heard the news of Lilly's death, we all held our children a little bit closer. We vowed to hug them more, tell them we love them more, and stop taking each day for granted. When we found out Jodie had cancer we vowed to stop griping and moaning about all the petty stuff in our lives, and again, to stop taking each day for granted. When I couldn't stop crying and feeling sorry for myself, I thought of Jodie. Here I have my son alive right next to me, and all I can do is be angry and sad because he has Ds. Jodie would have given anything for just one more moment with Lilly. It put my life in perspective. I realized that time really is precious. Jodie was a selfless and kind woman. When I asked to extend my maternity leave because I just needed more time, she gave it without hesitation. She sent me many messages to let me know that she was thinking of my family and constantly praying for us. Here is this woman who has lost a child and is dying from cancer, and she still wanted to comfort me. That tells you what kind of woman Jodie was. Toward the end, you could see she was so sick and in pain, but yet she never complained. Jodie never lost faith and still praised God. She never gave up. She fought until her last breath. She still believed a miracle could happen. I find comfort in knowing that Jodie is now at peace and is no longer in pain. She is cancer free up in heaven where she is reunited with her mama and sweet Lilly. She has been called home to our heavenly Father.

Jodie...we love you and will miss you dearly!

Lasix

I don't know how many echocardiograms Camden has had, but it's been a lot. He had a cardiologist appointment the other day and I was not looking forward to it. I already knew that Dr. C would not be impressed with his lack of weight gain. The tricky part is not knowing if it's due to his VSD or if it's just him. It had been two months since we had seen Dr. C and I think Camden weighed around 12.5 pounds. So, when he only weighed 13 lbs 9 oz at this visit he was a little concerned. He had another echo done which showed absolutely no change. I guess that could be good or bad. I was hoping the hole was a little smaller, but thankful that there are no signs of stress on his heart. The one thing that was different with this visit was the brief mention of surgery. He was not saying that he thought Camden would necessarily need surgery, but didn't make it sound like it was out of the question. We didn't discuss it further because I would rather cross that bridge when we come to it. For now things look pretty good so I don't want to add another layer of worry on right now. He wants to start him on Lasix just in case his lungs may be getting overloaded with fluid. Sometimes babies with congenital heart defects have difficulty gaining weight because they spend so much energy feeding. They end up burning so many calories because they are working too hard. We don't really think Camden's heart is causing him not to gain weight because it hasn't in the past. He also does not breathe heavy, sweat, or take a long time to eat. However, if his VSD is causing the feeding problem, he thinks the Lasix will help. He could tell I was very hesitant about starting a new medication but assured me that there were little to no side effects and that we could stop it if it didn't seem to help. I suppose it doesn't hurt to try. We get to go back in two months for another echo. Until then we will continue to pray that the hole keeps getting smaller.

      He's always so happy at his appointments!

I really thought I was going to have to take Camden to the ER on Saturday. He woke up smiling and just as happy as can be like he always does. As soon as I picked him up I could tell he was working really hard to breathe. He just could not get enough air. He started wheezing and I laid him down to look to see if he was using extra muscles to breathe. The poor boy had all sorts of retractions going on. The intercostal retractions (area between the ribs sucking in with each breath) were the most noticeable. His respiratory rate was around 80! In just those few minutes he went from a smiling baby to a not so happy sick baby. I was about to get ready to gather things up to leave when I remembered we had some albuterol left from a couple of months ago. I gave him a breathing treatment and his breathing immediately settled down after it was done. After a couple more throughout the day and a 4 hour nap he was back to his old self again. I definitely let out a huge sigh of relief! I did NOT want to end up in the hospital. The thing that is starting to bother me is that we seem to have these respiratory issues often. I'm not sure what's going, but hopefully these episodes will happen less and less as he gets older. It's so frustrating because I just don't know why. Oh well, at least he is feeling better now!

                     He just looked so sad. 

        Several hours later my happy boy is back!

I will be happy when July gets here because June has been nuts! This week is super busy for us and I'm ready for it to be done. Monday we lay a friend to rest (which I plan to write about in a different post), Tuesday is a hearing test, Wednesday we spend the night at the hospital for a sleep study, Thursday and Friday we have therapy, and then I work Saturday. I'm ready for a vacation!

                          My friend Kari took this picture and I'm just in love with it!

This Man

For those of you that don't know my husband, let me tell you a few things about him. He has one of the biggest hearts of anyone I have ever known. If you are in trouble or in need of help, Richard is the person you want in your corner. I used to get frustrated and always asked him why he wants to try and help every person in need that comes across his path. I have seen people take advantage of his generosity more times than I can count. Over the years people have used him and it would make me so angry. I'm very protective over my husband and I don't like to see him treated like that. When I ask him why he does this, his response is always the same. "If I can help one person change their life out of a hundred...then it's worth it." Richard is friends with all walks of life. He never judges and he will treat someone who only has a penny the same as someone who has a million dollars. If you truly want to change your life for the better he will give all he has to help you do that. Numerous folks have told me that they would be lost without Richard. They tell me Richard is like a brother or best friend to them when they have no one else. Many say they would probably be in jail, homeless, jobless, or friendless without Richard. This tells you what kind of man he is. I believe this is his purpose. Not everyone can do what he can do.

Now, don't get me wrong. He is also the most stubborn and hot headed man that I know. I guess a lot of men are. I really can't say much because I am too. Arguments are pretty much pointless as we both always claim we are right until one just gives in. It keeps it interesting for sure!

 

My husband definitely saved me during a difficult time after Camden's diagnosis. I know I would have been stuck in that dark place a lot longer if it weren't for him. I will always remember the day when Richard came to see us two days after we found out Camden had Ds. As you know, he was not with me when I received the results because he was working back home two hours away from the hospital. Looking back I'm glad we were in different places because we both process things very differently. We hardly spoke on the phone in those two days. When he drove up and got out of his truck he said "I'm excited about this." I remember thinking "excited...what the heck is there to be excited about?" From that point on he never looked back. His optimism made it hard for me to be sad. He let me know that it was gong to be just fine...even better than fine. Even now, if I'm feeling down he tells me to get over it. "There is nothing to be sad bout" he always says. He's right this time.

This man loves his children fiercely. He gives all that he has for his boys. His eyes light up when he is talking about any of his sons. He is an amazing man. Happy Fathers Day Richard. We love you with all our hearts!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

An Ounce and A Giggle

I feel like the weight issue is a never ending battle. Camden had started to gain weight again since we began fortifying his milk a month ago. At his six month check up he was 13 lbs 5 oz and had gained seven ounces since his last weight check two weeks prior. So, I thought this was finally working and he would continue to gain, even if it is slowly. However, I didn't think it would be this slow. We had our first GI appointment with Dr. C this week. As much as I didn't want to go down this route, it became necessary as Camden's reflux has been making him so uncomfortable. The first thing they do of course is get a weight. I really thought he was about 14 pounds because he just felt bigger. Imaging my surprise when we put him on the scale and he is only 13 lbs 6 oz. Seriously?! The poor boy gained one whole stinking ounce in two weeks time. I'm pretty sure an average of two ounces a month is not going to cut it. I was bummed. I kind of feel like I'm failing him in a way. Dr. C was very positive about everything and said he wasn't really concerned at this point since everything looks good in the big picture. He tested for blood in his stool to see if he possibly had a milk protein allergy that would be causing the reflux. It came back negative which was no surprise since he has had no other symptoms. At least we don't have to start dishing out cash for the pricey formula. He wants us to start fortifying his milk to 24 calories now instead of 22. Dr. C also started him on Nexium for his reflux. Yay! This is the real reason I wanted to get GI involved. Maybe starting this will make Camden more comfortable and he will start to eat more. The dietician at the office just wants us to do weight checks now every couple of weeks to see if this is working. The good thing is we can just call her when he gets weighed with the dietician from ECI at the end of this month so we don't have to drive back up to the office. I feel like we have driven all over town this month for doctor's appointments. Oh well, it's just part of it!

 

 

They have a great indoor play area in the hospital

so I took Carter by there for a bit since he had

to come along.

 

Camden also had his first swim experience this week. I really thought he would not like it since he is not a fan of baths. He did so great! The cold water didn't phase him a bit. I put him in the float and he was perfectly happy. I guess this means we will have a lot more pool dates this summer!

                                          

Waiting to go swim

 

Just relaxin!

 

 

Yesterday Camden giggled for the first time. I actually cried because I was so excited! He has been so close to doing it and I've been trying so hard to make him laugh. It was the sweetest sound. I know some may not understand why this is such a big deal, and I really can't explain it sometimes. Any milestone Camden reaches (whether it's social, physical, cognitive, etc) is a huge thing in the Hill house. It is celebrated with so much joy and love. This baby boy works so hard everyday for things that come natural to others. I am so incredibly proud of him in every way!
 

Class of 2013

Friday we watched my step son, Rylie, graduate from high school. Wow! It is so hard to believe that Ryan and Rylie are no longer little boys. They are becoming men. I have only had the pleasure of being in their lives for about seven years now, and it's been amazing to watch them grow up. I was so excited for this day to come because it would be the first time that all of the Hill boys would be together since Camden's birth. Ryan has been away at school, and when he was home for the holidays Camden was in the hospital. This would finally get to meet. Richard held Camden most of the time when we got there. He was very comfy in daddy's arms and was just taking it all in. I thought for sure since he was being held that he would be happy as usual. Wrong! I don't know if it was all the commotion and loud noises that got to him or if it was something else, but he did not like it! So, when they began to say the prayer, Camden decided to show everyone just how loud he could scream. It was quite embarrassing (although Richard thought it was hilarious). I decided to take him to the tennis courts to walk around while Carter and Richard stayed to watch the ceremony. The good thing was that the graduation was outside so I could still hear everything that was going on. Once Camden fell asleep, I made my way back up the bleachers to go sit down. He remained asleep for the rest of the ceremony.

Carter was such a good boy, from what I hear, and it was probably due to hanging out with his big bubba Ryan and sweet Kenley. Kenley is Ryan's girlfriend's daughter and is just a doll. They got along fabulously and kept each other entertained the whole evening. I hope they can spend more time with each other this summer before everyone goes off to school.

 

 

 

This was right before the ceremony started when everyone was still happy.

 

 

 

Rylie graduated with honors and with several college credits already under his belt. We are so proud of you Rylie! He will be joining his brother in Austin this fall for college.

This was Ryan just a short 3 years ago with Carter at his graduation.

This is Rylie with Carter now. It's so crazy how time flies and how much these kids grow up.

Another thing I was excited about that night was meeting Ryan's girlfriend. They have been together for a long while now, but for some reason we just had not met her yet. I must say she's even more beautiful in person and just the sweetest thing ever. They really do make such a great couple and I hope she sticks around for a long time...like forever. Sorry Ryan, no pressure.

This is our first picture of Richard and all of his kids. I know I'm biased, but he sure does produce some good looking boys! I think this was one of the few pictures Carter was actually smiling in. The boy does not like cameras.

Ryan and Camden finally meet.

A family picture of all of us.

 

It was such a great night and it was exciting to see Rylie start a new chapter in his life. I'm so incredibly proud of all the boys. I love them all and look forward to spending more time with them this summer.