Friday, December 25, 2009

Caleb's 1st Christmas


I can't even express how incredibly happy we are to have Caleb here to share Christmas with. He is our Christmas miracle. The boys were so excited to open presents with their brother. I can never thank God enough for allowing us this time to be with our son. I never want this moment to end.

Steven got me the most incredible gift...it is a huge portrait of Caleb. He is the best husband..the best father. He just lit up being with his boys...the love he has for them is breath taking. We have made memories that will last a lifetime......Merry Christmas




















Thursday, December 24, 2009

Christmas Eve



We went to Christmas Eve Service tonight. I was recalling that this time last year we had just recently found out about Caleb having trisomy 18. We couldn't hold back the tears during the service. Our hearts were broken thinking we would not be able to have our son to hold. This year we were crying because we are overcome with so much joy. We are so blessed to be celebrating Christmas with our son Caleb and for his brothers to be able to create such priceless memories with him. I cannot thank God enough for the wonderful gift he has given us...each and every day. After church some family came by and we opened gifts. Before going to bed the boys put out some reindeer nip, & cookies & milk for Santa. We heard Santas bells and quietly looked out the bedroom door. Santa (f-i-l) put out gifts and with a ho ho ho went on his way. Now I am ready for bed....I'm sure it wont be too long before I'm awaken by excited little ones. Merry Christmas to all!

Sunday, December 20, 2009

Happy 9th month Birthday

Caleb was suppose to have pictures done today and a special lunch. He hasn't been feeling well so we had to cancel. We received a beautiful birthday cake to celebrate with. Thank you Michelle & Shannon. We are pretty concerned because Caleb just hasn't seemed himself..very lethargic. Praying my baby feels better soon.

Saturday, December 5, 2009

New Toys & Peek-a-boo


Caleb got a new toy for Christmas. We aren't waiting to give him all of his presents until Christmas. We want him to enjoy them little by little....make Christmas last a little longer. It is hard to find things that are appropriate for his special abilities. But he loves his new colorful ring. He brought it up to his mouth once. Then he started playing peek a boo with daddy. He would bury his head, look out the corner of his eye and then turn his head back up to look at him. It was so cute. Devin had also given him a stuffed monkey the other day. It is perfect for his little hands.








Monday, November 30, 2009

Meeting Taylor

We went to St. Augustine to meet up with another family whose son, Taylor, also has trisomy 18. Taylor is 19 months old and is amazing. Julie, his mother, and I have become very good friends. We are so blessed to have been able to meet them in person. It is so nice to know that we aren't alone and have each other to lean on. They also have two other boys who got along so well with our boys. It was so funny to see Caleb and Taylor feed off of each other. They are truly connected. Friends forever. I hope that the medical profession can see all of our stories and realize that these children ARE compatible with life. They laugh, smile, love and feel. Taylor can even give hugs!! That was the most touching moment when I saw him give his mommy a hug. Caleb & Taylor acknowledged each other...they get it. I love them both so much. I love all our precious t18 babies. Their life matters, no matter how much time they have with us...they have a huge impact on our lives. They are "compatible with life". video

Sunday, November 29, 2009

First Christmas Lights

We went down to the downtown square to see all the Christmas lights. Caleb loves bright lights so he was just so excited. It was really nice to get out for a bit to enjoy the beautiful lights, wonderful weather and great music. There were christian bands playing..it was a perfect evening.







Saturday, November 28, 2009

Facing our own Giants

Watched "Facing The Giants"...again. I love this movie because it reminds me of how much God loves us. It is a testimony to His faithfulness to us and a reality check on our faithfulness to Him. I was reminded of how it took many many years for me to have our son Devin. I had given up when I was told that I would probably never be able to have children. But God had a different plan. How tremendously blessed we are to have our beautiful son Devin. Then once again we were faced with not being able to conceive. And once again after several years God surprised us again. Our precious son, Caleb. We still feel so blessed that we were chosen to be Caleb's parents...even if that meant for only a short while. Every moment with our children is more than we had ever expected. Things can seem unbearable at times but I know God is there to carry us. I have learned to love my children more than I ever thought possible, to hug them even harder and more often. We will love God in good times and in difficult times. He constantly shows us He is with us. Today while eating lunch, I looked over at Caleb who was sitting in his swing. He was watching his animals go round and round. Then I saw him reach for one of them. I yelled for everyone to look, then the tears just started pouring down my face. My mom was overwhelmed with happiness. Steven started snapping pictures and the boys got to see their brother acheive something we never thought would be possible. It was another milestone showing with God.... anything is possible.

Thursday, November 26, 2009

Thanksgivng

There is so much to be thankful for this year. I just can't believe that we got to celebrate Thanksgiving with our precious Caleb. We had a small celebration with just us and my father and mother. We also got a surprise by my sister in law who came down from NY. She hadn't seen Caleb since he was born.

I saw this saying on a friends post and I think is says it all. "With you in my life, the music plays longer, the stars twinkle brighter, and Heaven doesn't seem so far away." I see a little piece of Heaven whenever I look into Caleb's beautful blue eyes. Thank you God for my wonderful family. Without them this would be unbearable. And thank you God for the amazing friends you have brought into our lives. But most of all, Thank you God for walking with me, with us, on this journey.

Sunday, November 15, 2009

"Daddy"

Caleb was having such a good night laughing and cooing. During one of his vocal moments...he said "daddy". Whether he meant to say it or not isn't important...the look on daddy's face was priceless. He was beaming. My dad was here as well to witness it. Confirmed...it was "daddy". Now Steven is relentless to get him to say it again :) I love it.

Friday, November 13, 2009

Cpap/bipap study



Caleb went in for his titration study. He tolerated his mask for about 2 hours then he started screaming. The rest of the night was really difficult. He didn't breathe well at all. We were up with him all night. Monday we will get the results.

Saturday, October 31, 2009

Halloween 2009

I am so amazed that I am even posting this. We made it to Halloween! Never in my wildest dreams did I think that I would be dressing up the boys to share moments with their baby brother, Caleb. We had such a good time going to Coon Hollo Corn Maze, The Pumpkin Patch and of course trick or treating. We made some wonderful memories and I don't think the boys will ever forget how absolutely adorable their baby brother was as Master Yoda. Our children are our world. They are precious and I thank God everyday for them......

video

Wednesday, October 21, 2009

A day of reality


Caleb has been having issues with his oxygen levels being low and I noticed that his heart rate had gotten really low, in the 60's. That is something I hadn't noticed before. I called the cardiologist and pulmonologist to see what I needed to do. Caleb's pulmonologist felt like we really needed to see about getting him on a cpap or bipap. But we first had to get him use to using a mask. That in and of itself is going to be a major feat. Her concern is that she knows that Caleb stresses out so badly that he causes himself to crash. So the options are to either get him use to using a mask or let his respirations slowly get worse. Not an option that we like. So daddy is trying to figure out a way to get more oxygen to him without a mask. Maybe tenting the one end of his crib.


I spent the day loving on him, playing with him, taking pictures and videos. I couldn't stop laughing and crying. Devin got to go spend the day with his friend Liam. It was good for him and it was good for me to have some alone time with Caleb. These days of reality checks are hard. I just love my boys and the thought of losing either of them just rips my heart apart. I know the reality with Caleb I just don't like it when it slaps me in the face.

Mommy & Caleb Time

We got to spend some alone time together, it was wonderful. Thank you God. video

Wednesday, October 7, 2009

New Crib

Two very wonderful people gave us a brand new crib for Caleb. They had wanted to do something for us when Caleb was born regarding baby furniture. Because we thought that Caleb would only be with us for a short while we decided to not get any furniture. He would stay in a bassinet that was just his size. Now that Caleb has amazed us all and is 6 months old, it is time to move up into a crib! What an awesome milestone. He loves his new sleeping arrangements. Thank you so much for the amazing gift. I love looking over at him sleeping, he's such a big boy. He's also surrended by pictures of all his little friends & angels.

Tuesday, October 6, 2009

Applesauce

We were so excited...Caleb tried his first baby food...applesauce. He doesn't take anything by mouth so we wanted to start out slow. I don't know that he will be able to take a lot of the baby food but he at least gets to try new flavors. He seemed to do really well. Another awesome milestone!



video

Friday, September 25, 2009

Synagis Shot

Went in to his Pediatrician's office to get his Synagis shot for RSV and his flu shot. I've heard other t18 mommies whose little ones have gotten RSV and gotten really sick or died. It is so scary. Blessed that we were able to get the shots. They are $1800.00 a shot each month for I think 5 months. Thank goodness for insurance!
Since last week he is up to 11 lbs 13.5 oz! Yay!!!

Wednesday, September 23, 2009

Cardiology appt

The appointment went well. There hasn't been any change. Which is a good thing. We would like it to be better but at least it isn't worse. I talked with his Cardiologist about how another t18 mommy had told me about how her little one's pulmonary hypertension had gotten better with having a bipap. He explained that it can get better if the ph isn't caused by lung disease. I asked if we knew that with Caleb. He said no but that it may be a good idea to have a scan of his lungs to see where the cause of the ph may be. If it isn't lung disease then there may be hope to correct some of it. Praying, praying, praying. The only problem is that we will not allow Caleb to go under sedation for any of these tests. It is too dangerous. So we need to see how creative we can get to get this done. He is weighing in at 11 lbs 8 oz!!

Sunday, September 20, 2009

Happy 6 month Birthday!!!!



We celebrated Caleb's big day at Silver Springs. It was a beautiful day. I can't believe that he is 6 months old...I just cry when I think of how incredibly blessed we are. Not only for having Caleb but for having such a wonderful family.
There were hardly any people there. Caleb got to see birds for the first time....and boy were they loud. We got to tell Caleb's story to several people. They wondered why we were celebrating his 6 month birthday. So I had to gladly tell them :) We made some beautiful memories. Devin just adores his little brother. We were sad that Corey wasn't with us. But we will go again soon. WHAT AN INCREDIBLE DAY! We love you so much Caleb.

Tuesday, September 15, 2009

Talking to my animals

Caleb loves being in his swing....most of the time :) He has learned that being held a lot is not so bad either. Which we don't mind doing. I think the fact that he acts so much like any other baby is amazing. You can really hear him talk in the video. It may make you a little motion sick, I was loopy after taking it. But I love all the talking he did.

video

Saturday, September 12, 2009

Laughs



Daddy was kissing on Caleb and making him laugh. I LOVE IT! There is nothing better than the laughter of your children.

Friday, September 11, 2009

Forgot to Mention

Caleb is 10lbs 7 1/2 oz!!!!

Thursday, September 10, 2009

Sept 10, 2009 Neurology Appt

It is Devin's Birthday!!! He is 5 years old. Where does the time go. We made a HUGE deal about his special day. We got him ready for school, he was all set to let everyone know it was his special day :) We will be having a party on Saturday...hopefully it won't rain.

We had Caleb's Neurology appt today. Dr. Carney is absolutely wonderful. He is so positive. We went over Caleb's MRI. Yes, there are big problems because there are parts of his brain that aren't fully developed. It is a complete brain just not developed adequately. He also has Dandy Walker Malformation. This all basically means that his development is slow (which we knew), and it means that he will continue to have seizures. Dr. Carney expresses it as, it is what it is and we will handle it. I love it. He said that Caleb has great eye contact, and is pleased that he coos, smiles and laughs. Caleb will have a problem with tone bc that part of the brain is deficient. So we need to continue to work with pt/st/ot. There is a concern with the tuft of hair he has at the bottom part of his spine. There is a 40% chance with Dandy Walker Mal. to have neuro tubal issues. Trisomys also often have the same issues. There is a soft spot where the tuft of hair is and he wants to look at it through ultrasound. We may not get a great image of it but the next option is an MRI that is done under sedation. We are so angry that this wasn't done when he was under before during the his last MRI. We asked the Dr's at the hospital if we could have that area imaged. They said they don't do that it is done through ultrasound. We have 2 doctors that said differently. Anyway, we have to move forward now. There are a couple of concerns with this spot bc Dr. Carney says it is possible for him to get meningitis. My heart just sank and my head just about exploded!! There are also other things that can be a problem but usually not until later in life. So we just wait to get the ultrasound and go from there. Dr. Carney agreed that there may not be anything that we can do in our situation but we won't know that without knowing the full extent of what is going on.

Tuesday, September 8, 2009

September 8, 2009

Hospice called with the results of his pulse ox from over the weekend. He didn't do well. His sat levels were really low. I know we will probably have to put him on a canula or mask. He just hates anything on his face. We will get with his pulmonologist to see what she thinks. Devin had a great day at school. I asked what he learned. He said Bible. I asked what and he said that they closed their eyes and that God said let there be light. And there was. He said that only God can make darkness. That God said let there be the seas, the skies, flowers and it was done. He made people and children. He even made push pops! I just love him to pieces.

Sunday, September 6, 2009

Quiet weekend

It's Labor Day weekend. It has been a relaxing weekend so far. We went over to our friends house for a bar-b-que. It was really nice. Devin had a great time swimming. He is so sweet. We have been monitoring Caleb's oxygen with a pulse ox that Hospice brought over. We need to make sure that the blow by we are giving him is adequate enough to keep his sat levels up. During the day when he is awake his sat levels are great. But when he is sleeping they dip down way too low. We will keep monitoring him for a couple more nights.

A Father's Love



I put this video together for Steven. So many times we forget that our husbands are hurting just like we are. I see how much Steven loves his children. Caleb has really stole his heart. He walks by him and says he is the most precious baby I've ever seen. They spend time just staring at each other sharing a special moment of love. After showing Steven the video, he asked to add something at the end. He is a wonderful father. I just wanted him to know how much he is loved.


video

Wednesday, September 2, 2009

September 2, 2009

Caleb woke up this morning like usual at about 6:30 am. He is like clockwork. He starts flailing around because he wants out of his bassinet and wants to lay in our bed. Tell me he's not like any other baby :) Daddy & I layed there with him. It was a nice morning. Then he wanted to be held. This is something new. He usually wants to be left alone. Now he cries because he wants to be held. And don't you dare try to lay him down when he finally falls asleep...he knows...then he's REALLY mad. I love watching him sleep in my arms. His eyes roll to the back of his head, he gets this silly Mr. McGoo grin and sometimes I get a little laugh. What must he be dreaming about? Must be the angels playing with him.


Had his GI appt. Caleb is 10lbs 4 oz and is 22 1/2 inches long. Way to go son! Daddy & I love you so much. You continue to amaze us.

Tuesday, September 1, 2009

September 1, 2009

I am finally getting Caleb's blog set up. It has only taken me 5 months to do! It was a pretty quiet day other than the arguing with different agencies trying to get respite care. It looks like it just isn't going to happen. It is hard when you don't have any help or just relief sometimes. But then I look at my little mouse's face and it all seems better. Caleb loves to get kissed on the forhead. He just laughs. I sat here thinking about all the things I'd love for Caleb to experience. Will he ever get to see a sunset, play in the sand, get to see Shamu or be able to hold his head up so he can rest on my shoulder. I would love for him to wrap his arms around me and I'd hold him so tight. I love him so much that whatever he does is such a miracle...I'll take it and cherish each and every moment.

Thursday, August 20, 2009

Brotherly Love

Devin loves his little brother. He is always wanting to do something for him. He was so excited to sing for him....he got his room ready with all the animals. They are such a blessing.
video

Wednesday, August 5, 2009

Seizures



We had gone in for Caleb's Cardiology appt. Caleb just got done having his routine EKG and we were waiting to get his echocardiogram done. Daddy was holding him and I noticed he was trying to get Caleb comfortable. I went over to them and knew something wasn't right. Steven said that he just starting pushing out & getting rigid. Caleb had a blank stare on his face and he wasn't responsive. I couldn't bend his arms or legs. I opened the door and told them that I thought Caleb was having a seizure. All of a sudden everyone came running in. It just happens that Caleb's Cardiologist comes to Ocala and holds appts at Dr. Kern's office (Pediatrician). All of a sudden Dr. Kern's comes running into the office too. By this time Caleb was in the postictal period. It took him a couple of hours to finally calm down. They all agreed that we needed to get Caleb to the Shand's to be evaluated. After a great ordeal and many hours later we were at Shand's. We met with the anesthesiologist because Caleb was scheduled to have an MRI in the morning. I asked why we weren't meeting with the cardiac anesth. We were told that he would absolutely...always need to be under the care of a cardiac anesth. I fought with the dr's for hours. Dr.Ivsik (Caleb's cardiologist) came to the hospital and took care of things, he is wonderful. But it took the hospital 20 hrs to get things arranged. I was so angry because Caleb had only had IV fluids.




Caleb didn't do well under sedation and after the MRI he was sent up to PICU to recover. He just wouldn't come out of it. At about midnight he started to go down hill quickly. I watched the monitors and his respirations went flatline then his sats dropped. He would gasp when he came out of what we think were seizures and apnea. It was horrible. I could tell when he was going to crash. It got more and more frequent. I just layed there on him and cried. The nurses & dr's worked so hard to try and stabilize him. They asked me what our wishes were. My stomach just sank...my heart hurt so bad. I didn't know what was best...no I did know I just didn't want to think about it. I prayed that God would guide me in these hard choices. I called Steven about 2 am and told him that I thought it was time and for him to come to the hospital quickly. Extra caffeine didn't work. They put him on a cpap. He finally was able to stay stable and rest. Caleb was also put into isolation because he had a fever and they weren't sure what all was going on. The next day he had an EEG done. Both the MRI and the EEG showed that he was having seizures. He was also diagnosed with Dandy Walker Malformation. Caleb hadn't cooed or smiled or acknowledged us for days. I was so sad. I kept thinking what did I do?? I was so afraid I wouldn't get my little mouse back. But we did. After we got home he really started to get back to his old self. Thank you Lord for continuing to keep Caleb safely in Your arms. You are our strength...You are with us always....

Wednesday, July 8, 2009

Unexplained Blood Infection

Around 11 pm Caleb finished his feed. He threw up and had a bout of diarrhea. No big deal...babies do this. He only did it once. But we called Dr. Kerns and asked what to do. She said to give him pedialyte once we knew he wasn't throwing up anymore. He didn't have a fever or anything else. So my mom and I went to Walgreens around midnight. Steven and I slept in the living room and Caleb slept on daddies chest. Before we went to sleep we filled Caleb's bag with Pedialyte because he was fussing like he was hungry. That was around 1 am. At about 4 am Steven got up telling me to get a rag. He had thought that Caleb had wet through his diaper but his mic-key had come out and there was fluid all over Steven. We were a little freaked out because we had never had to put in a mic-key and we were worried because we didn't know how long it had been out. We had no clue how the thing came out. The bulb was intact and full. Steven couldn't get the mic-key to go in all the way so I called Dr. Islam's office (Ped surgery). The doctor on call told us to come on in to the ER to make sure placement is ok. Steven finally got it in and taped it down but something told us to go in anyway.
When we got to the ER we were met by Peds Surgery. The mic-key had come out again...bulb and all. They popped another one in and said for us to try a feed to make sure everything is working right. Caleb only took about 35 cc's and vomitted. They said he probably has a bit of a bug and to watch him. While they were getting all the paperwork filled out we waited in the room and watched "In the Heat of the Night". :) Steven was holding him and I decided to go over an touch Caleb's forhead. He felt a little warm. I asked the nurse if we could take his temp. It was about 100.4. I think 100.3 is their cut off. So they said they wanted to keep him over night for observation. While they were trying to get us a room, I noticed the moniter that took his vitals climbing. His blood pressure went up to 228 and now he was burning up. So once again I went to the nurse & said something is wrong his bp is getting too high. She thought it was the monitor reading wrong & I told her that I knew how to read a monitor that somethings wrong. She went & checked it out. I could see the concern in her eyes. His temp was now over 103. All of a sudden a team of dr's & nurses flooded the room. They said he is going into respitory failure and was septic...they needed to intubate him. My heart sank. I thought this is it. Steven went with Caleb to the other room where they intubated him. I couldn't watch. I sat there & cried in an empty space. They took my son. God what was happening?? Several nurses and staff came and knelt down beside me. I could tell they were holding back their tears. I asked if my son was going to die. They just looked at me & said it wasn't good. I called my mom who was at our house with our son Devin. I told her that Caleb crashed & she needed to get there quickly. I needed her there too. That was one of the hardest calls I've had to make. A little later we were sent to PICU. He had all kinds of tubes connected to him. It was horrible. They had a line in his collar bone area for access. They told us he had some sort of infection and started him on major antibiotics. They took blood for cultures to see what we were dealing with. Turned out to be Streptococcus Veridans. They couldn't understand how he could've gotten it. It is rare for a child his age to get it. He was fighting so hard. Later they came in and said they needed to do a blood transfusion. What?? I was terrified. But he wouldn't have made it if we didn't. They had to also tie his hands up because he kept trying to get the tubes. He is a fiesty one. We ended up having to stay for 10 days in the hospital because he needed that long of antibiotic treatment. The sepsis did a number on his little body. But if it weren't for what we believed were the hands of God pulling Caleb's mic-key out that night, he would have died. It happened so fast. A wonderful part of this event was that we could say that God put Caleb right where he needed to be. No dr or nurse could explain what happened. I don't know how many times someone came in asking for us to explain what happened again. They had to hear it for themselves. And I was happy to keep telling them the story.

Thursday, April 16, 2009

Gtube Placement & Falling In Love

We had just had our appointments with Caleb's Cardiologist and Pediatrician. Dr. Kerns (Caleb's Pediatrician) had suggested that we get the ng tube out and have a gtube put in instead. That we have a window of opportunity to get it done while Caleb's pulmonary pressures were good. By the time we got home we had a message saying they were able to admit us later and have the surgery the next day. Everything seemed so fast but we knew we needed to move forward. The ng tube was just irritating his nose making it hard for him to breathe.
We arrived at the hospital and got settled in. I was a nervous wreck. We met with the cardiac anethesiologist. He probably thought I was a basket case. I kept crying saying I didn't want to do this....he just said well you don't have to ma'am. He had a very dry personality. I just snapped at him and said I know I don't but I have to...this may be his only opportunity. We got all the paperwork done and we finally got to relax. I curled up in the crib with him and we cuddled. It was my first experience with monitors. They kept going off all night long & I would smack my head up against the metal railing. Needless to say there wasn't much rest. The next day they got him ready for surgery. Dr. Islam (Ped Surgery) is wonderful. He kept telling me everything would be fine. That it was a simple surgery. But my heart was hurting so bad. I just couldn't stop crying. I think a lot of it was guilt. Up until this point I was finding it so hard to bond with Caleb. My heart broke because I so desperately wanted to be close to my son. I guess I was just protecting myself. I was so scared he was going to die. Now I found myself going into survival mode....how can I help him live. I just laid by him and prayed. I begged God to please let him live. To please give me another chance to love him the way he deserved to be loved. I always loved him but now I was in love with him. Surgery went well. He had a couple of apnea spells but this is when he was introduced to caffeine. It worked wonderfully. It was so hard to see him hooked up to so many wires and tubes. But he made it. Thank you God for giving me another chance. Oh how I love my son. We were in the hospital for about 5 days. He is such a fighter. I had family in from Texas and my father in from Virginia. I don't think they were thinking they would be spending their vacation at the hospital. My cousin's husband is a Pastor in Texas, it was so nice having them there.
My beautiful son, I love you so very much. I promise to fight right along with you. You are so amazing. You are so loved.










Tuesday, April 14, 2009

The day we thought Caleb was going Home


Steven, me, my mom & Devin were having lunch. I looked over at Steven, he was with the baby. I could tell something was wrong. I asked him if everything was ok, he just shook his head no. My heart sank. I ran over to him and we headed to the bedroom where the oxygen was. Caleb was lifeless and gray. We immediately started oxygen and stimulation. Nothing was working. Devin walked in like he was a pro at this and asked where the phone is bc he needs to call Pa (my dad). We called Hospice and our nurse Stephanie came by. She is wonderful. After some time Stephanie said it is time to pray and we asked if we should be calling our family to come over. She said yes. His breathing and heart rate had changed. There is no way to explain how I was feeling. I just layed next to my son and begged for him to not go...to fight. It has been several hours now. Family & friends came by and sat with us. He continued to go up and done...but never was there a period where he responded. He was just limp. As the day went on Stephanie said that I need to tell him it's ok. He is so tired. I just couldn't seem to pull it all together. I kissed his little face and told him that mommy loves him and that I would be ok...that it is ok to go Home. We called Pastor Mike and he and an Elder, Bob came by. It was about 7:30 PM. Shortly after they got there, Caleb decided to turn pink again and start moving. Praise the Lord! I told them they had to stay the night :) We were all exhausted but so incredibly elated that we had our little Caleb back.

Tuesday, March 24, 2009

The day we came home

We had gotten home from the hospital and were met by so many wonderful people. We had family, friends and people from Hospice. We were so glad to be home and to love on our sweet little angel. It was a long day signing paperwork from Hospice and getting the medical equipment that we needed. My dad was here from Virginia and my mom was here from Tampa. After a long day we finally got to settle down a bit. Steven and I were in the bedroom rearranging things when Devin came in and said something is wrong with Caleb. We rushed in and he looked blue & dusky. We immediately put oxygen on him and called Hospice. While we waited for the nurse to come out Steven just held Caleb. He has crying and pleading for God to please not take his son. We sat together holding Caleb...was this the way it was going to all end?? It broke my heart. I cried and was so scared. Caleb looked so lifeless and gray. We tried stimulating him but nothing was working. I was worried about Devin too, he was trying to hide under the bed he was so scared. Finally Hospice got here and called out a crisis nurse. After what seemed like forever Caleb came around. Pam, our nurse took over and allowed us to get a couple of hours sleep. God blessed us with another day.

Friday, March 20, 2009

The day we finally met our little angel



It is almost 6 am. I'm 43 weeks pregnant. We are on our way to the hospital. Didn't sleep very well, really anxious. Scared of what is to come. Really tired emotionally. There is almost a peace about this day. I can't wait to see my little angel's face. We are still praying for a miracle. God will show us His Will soon. I'm ready...I think.


Family, friends, Pastor Mike, have all shown up to be with us. It is wonderful having everyone here. I was suppose to go in at 9 am. But didn't, it was more like 11:30. I was terrified, but the medical staff was fabulous.


I didn't want any medication that would make me sleepy, I wanted to be totally awake, I didn't know how much time I would have. The anesthesiologist kept asking if I wanted anything to help me relax when we were getting started. I think I was making him crazy or he was worried about what was about to happen. The drape was up, I couldn't see anything except for Steven's face. I started to have chest pains...very painful. The anesthesiologist said it is time to have something. It was to just take the edge off. I then heard something crinkly. I asked what that is. The Dr. said it was them cutting..I said, they started..she said we are almost done. The breath was taken right out of me. I started crying and looked at Steven. We held hands. Then I just saw Steven's face fill with tears. Then I heard an amazing sound...my son cried. I told Steven to go with him. I'd be ok. He came back & said he is wonderful, he peed on the nurse! I asked how he looked...he smiled and said he is perfect...he has an extra thumb. The medication started to wipe me out. The next thing I new they put us in a room to recover and all my friends and family were able to be there. The hospital was so wonderful in accomodating us. Immediately after getting into the room, Pastor Mike performed the Baptism. It was beautiful. Shortly after Wendy took amazing pictures of Caleb. She was given a room to do the pictures.


I tried to nurse but Caleb wasn't able to latch on. It was too difficult and he was hungry. So they put a tube in his nose that went into his stomach to feed. An ng tube. Now he can rest.

Steven wrote this in the journal

Today my little Caleb was born, he was more beautiful than I could have hoped for. God answered all my prayers about today. We've had many family and friends here to share in our joy. Caleb was just so perfect and strong. Everytime I see him my heart fills so much and I'm overwhelmed with love and joy. I would not give up this experience and time to get to know Caleb for anything in the world. God has inspired me today beyond expectations and reassures me that God can work amazing wonders.

Thursday, March 19, 2009

The day before we meet Caleb

Steven & I got up & started cleaning....getting everything ready. I had my moments of feeling scared & cried. I'm ready to meet Caleb but also sad because of the unknown, how long will I have to hold him. I've done all I can do to care for him to give him the best chance possible. Now it is up to God. I stood in the shower and wrapped my arms around my belly. I cried and talked to Caleb...this may be the last time I will feel him alive. Oh how my heart aches. I just fall to my knees (not literally because I wouldn't be able to get up), I need you God more than ever. I can't do this alone. Please, please carry me through this.
Mom came up about 4. She is doing ok. I think she is doing better than I am. But she is scared. She is trying to be strong for me. Dad came in from VA. at about 6:30 and we all went to Cracker Barrel for dinner. We had a nice time. So many people called us...we feel so loved. I spoke to a dear friend that I had met through this journey, Dyane. We both just cried. We all tried to get some sleep...it was hard.

Friday, March 13, 2009

Doctor's Appt.

I'm at 42 weeks and I'm praying that the doctor tells me I've dilated enough to be induced. Dr. Richards really doesn't want me to have a csection. His concern is that I will have a csection and be left with a hard recovery without having my baby to hold. I am struggling with this. Is my life more important than Caleb's? Who am I to make these decisions? The night before I prayed so hard. Asking God to please give me a sign on what to do. That morning I woke up and told Steven that I need to have another ultrasound. It is just weighing on my heart. When we went in to the doctor there was no change. I was so disappointed. I asked the dr. to please do another ultrasound. He asked me what was I hoping to gain from it. I said I didn't know but I wanted to see my son again...it may be the last time we would see our son alive. He agreed. During the ultrasound we all just laughed at how active he was. Dr. Richards said that he had long hair and looked good. There were still the issues with the heart and other things but he kept it really positive. I was so happy for that. He took the measurements and left the room. When he came back in he had a big smile on his face. He sat down and said that Caleb was measuring about 6lbs 5oz. That is really big for a baby with t18. Steven & I just laughed and were overjoyed. The dr. then said that he was comfortable doing the csection now, that he felt it was the best thing. God is so good...He gave me the sign I was looking for.

Last ultrasound before we met Caleb



The morning this u/s was taken I had prayed to God to please help me with the decsion on a csection or a vbac. I was already over 41 weeks & so torn on what to do. My Dr. wanted a vbac bc his concern was me being in the hospital longer w/out my baby (what we thought would happen). I also wanted another opportunity to see our son...it may be our last to see him alive. Once again you can hear the conversations between me & the Dr. on Caleb's condition. After the u/s the Dr. came out & said he's measuring about 6lbs 5 oz!! We laughed & cried bc that is pretty big for a t18. Then he said he was pretty comfortable w/a csection so let's schedule it. At 43 wks we met our beautiful son, Caleb. He was 6 lbs 5 oz. I'm so glad our Dr. allowed us to video tape our ultrasounds. I would encourage families to do the same..they are cherished moments of a precious life.

Friday, February 13, 2009

Getting to know Caleb



Our Doctor allowed us to video tape the ultrasounds of Caleb, we didn't know if that would be all we would get to know of our son. You can hear some of the discussions we had about Caleb's condition. We got to see that he had a lot of hair..still does. We could see the issues with the heart and see his breathing. We are so grateful to have had these moments so we can share with others...that even if their baby is called home way too soon..that while they are here on earth, their life mattered. They played, lived & were loved. These images show life.

Sunday, January 18, 2009

NILMDTS



Wendy who is a photographer and donates her time to the "Now I Lay Me Down To Sleep" organization came over to our house to do our Maternity shots. We were so excited to have these pictures done. The organization offers bereavement and rememberance photos to families who are going through situations like ours. We had a wonderful time. We laughed and we cried. Wendy has become a very dear friend of ours. We now have beautiful pictures to cherish forever.

Saturday, January 3, 2009

January 2009-Arrangements


I can't even explain in words how hard this day was. Steven and I had decided to make the funeral arrangements ahead of time because we didn't know how long I would be in the hospital. I didn't want Steven to have to make these decisions alone. We were greeted by an absolutely wonderful man who helped us go through the steps on our son's final resting place. Almost immediately Steven & I started crying. We looked through so many books for pamphlets, scripture, songs, and worst of all caskets. How do we even make decisions like these? Nothing seems good enough for a son we haven't even held yet. As we sat there, Caleb was moving and kicking. I just wanted to hold him & kiss his sweet little face. How God can this be happening? I know it's not for me to know now but somehow give Steven & I strength to endure this pain. Steven sat quietly as tears rolled down his face. He so loves his son. It took us about 2 hours. As we finished, the man who helped us asked if he could pray with us. We said absolutely and then we were off to get our other children. Somehow life has to go on, we have to pull it together for the sake of our children.