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.

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.

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.

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....

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.

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.

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.