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.

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.

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.

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.

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.