I still have people asking me questions about what exactly happened with Baylor. Which I love, because I know we had soooo many people praying for us (Thank You Facebook :) ). I am writing a long story - not so short version of his story. Feel free to read it if you want. I just want to make sure I remember the details to tell him how much God watched over him from the beginning. I still can't emotionally tell the complete story yet.
The first question people usually ask me is if we had any clue that he would have any difficulties. We did not. As far as I knew he would be a healthy baby from the beginning. My last ultrasound was at 20 weeks. I am very thankful that nothing showed up then because that would have been a long time to worry about all the what ifs.
I went in at 9:45 am on Thursday, December 15 for a noon C-section. I had blood pressure issues (dropping low) with my epidural, just like I did with my other two C-sections. I had several Epi Pens to help with that. We were lucky enough to deliver in the new building of the hospital. My whole pregnancy I had heard how in the operating rooms they would pull a TV screen over to the mom while they were bathing, weighing, measuring, etc. the baby. I was in a lot of pain during the C-section, and had not been with my previous two. It felt very "rough" and I had A LOT of pressure in my chest. The Dr.s were having a hard time getting him out. Matt and I could tell by the way they weren't talking that something was wrong (and they never pulled that TV screen over). The only medical staff that was on my side of the curtain was the nurse anesthetist. Bless her! I kept asking her what was wrong, telling her my chest was hurting, and looking at her crying. She kept rubbing my arm and reassuring me. Baylor's time of birth was 12:08. He weighed 9 pounds, 12 ounces.
Finally Dr. K (my OB) came around to my side and told me that B had a mass on his side and was breathing rapidly. We later found out that the mass measured 10 cm by 6 cm. They wheeled him by me in the incubator as they rushed him to the NICU (he looked just like Kaiden). Since they didn't know what the mass was no one could hold him and they didn't even bathe him. I went into the recovery room and Matt went to be with B. My other two kids were with my parents waiting to see their new brother. My parents finally took them home when we realized it would be a while.
They finished running tests on him at 3:30, and told us we would need to wait on a surgeon and cardiologist to view the results. We were still unsure at this point what the mass was. It could have been anything cancer, an organ, lymphatic mass, etc. We were told if it was the lymphatic mass it could be wrapped in his chest cavity (they would have had to break his ribs), cancerous, have a blood supply, and lots of other unimaginable things. In the mean time the recovery nurse took me by his room to peek at him on the way up to my room. Matt was still staying with him. One of my best friends (Jennifer) came to sit with me, which was SUCH a blessing. In that situation you just worry about your children. My parents had the two oldest, and Matt was with B. Luckily Jennifer was wise enough to know I needed that support. Jennifer was amazing. She knew just what to do and immediately went into action being my advocate. Her personality normally is to sit back quietly, but boy did God give her a bold, but very polite voice that day.
I was in the recovery room from right after he was born until 3:30. It was like time stood still, but sped up at the same time. I was on drugs :) and had had several epi pens to help with blood pressure. I can't really tell you what I did for that long. I know I updated facebook, texted, and called a few people. I do remember laying there thinking, I have this baby that I have only seen as he zoomed by me, but wow I am already deeply in love with him. The rest of the time I spent in prayer. I made a lot of "promises" to God. I am sure He just smiled down at me for those. For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 I also remember running through "what ifs" in my head.
At 8:00 pm (8 hours after he was born) the surgeon from Children's (Dr. Chen) came in my room. He said based on the x-rays it was a lymphatic mass (think over production of a lymph node). It was not wrapped in his chest cavity (praise), but he would not know until the operation if it was cancer or had a blood supply.
He also told us B has a heart condition. His aortic arc grew the wrong way during development. Some people go their whole lives with this condition and don't know they ever have it. The only time it usually causes problems is when they start to eat solid food. The problem "over corrects" itself by wrapping around the esophagus. It can cause extreme reflux. We will go to a cardiologist in June to get more information on this. We've been told that less then 1% of people that have this condition have to have surgery.
Our wonderful pediatrician also came that night. Since B was in the NICU he was not officially on the offices rotations. Dr. A came anyway. It was so reassuring to know that he had seen B. He told me that he was basically an "uncle" in this situation. Hearing him tell me the surgeon we had been assigned was the best was exactly what this momma needed to hear that night.
I did get to go by and peak at B again that night (thank you Jennifer). But picture a post C-section mom, hasn't slept after the surgery, on drugs, with a catheter, with an iv pole, nauseous from the meds, post several epi pens, in a wheel chair. I'm not sure how many minutes I lasted in his room before I feel asleep in the wheel chair.
The next day around 10:30 am I was able to hold B for the first time. It was such a wonderful feeling to touch and hold the child I had hardly seen but was already so in love with! They also let him eat for the first time that day.
B continued to do well other then the mass. The Drs scheduled his surgery for Monday, Dec. 19. We were going to be a "fit in" since it was scheduled on the weekend so we didn't know a time. Saturday the neonatalogist mentioned that since B was doing so well he might be able to visit me in my room. Of course I jumped on "his might" and said when? My other two were coming at 4:00 that night and I wanted everyone together. When they got there B was in my room. They said he could stay with me until I went to sleep. So I sent him back after his midnight feeding. :)
I spent most of my time at Brookwood in B's NICU room. Since we were in the new building he had his own NICU room. It had a couch and a recliner. Matt and I would go there in the morning and I would sleep on his couch. All of the emails, calls, and texts of support were what got me through all of it. I really had a calming peace about the situation. We had such a wonderful medical staff. They explained everything to us in wonderful detail. No question was too small or big to ask. They were never too busy to help, answer questions, etc. That's not to say I didn't have a few "Just had a baby, that's having surgery at 4 days old" crying moments.
Sunday, Dec. 18 he was transferred to Children's. They took him by ambulance. When the Dr made rounds that morning I was at the door packed and ready to be discharged. I wanted to leave with B.
At Children's we had THE BEST nurses. On Sunday he was assigned to a nurse that only works a few shifts a month. We just happened to hit her at that time. It was such a blessing. B had her Sunday 3 pm - 11 pm, then she came back in Monday morning at 7 am and stayed until 11 pm that night. Since he was a surgery patient on Monday he was her only patient. It was wonderful to have a consistent person during the scariest time.
They quit his feedings midnight on Sunday to prepare him for his surgery. Monday morning the OR called up to the NICU about 9:30 am and told the nurse to prepare B for surgery. I was so glad he didn't have to wait all day without eating.
His surgery started about 11:00 am. They let me carry him from the NICU to the OR. It was so hard to hand him over, but I felt confident that he was in the best care possible. I remember feeling such a peace about it.
I was so thankful for the friends that offered to keep my other two that day so my parents could be there. B had a FULL waiting room of people that loved him.
One of the Drs came out half way through and told us there was no blood supply in the mass. That was such a relief to know they wouldn't have to reroute his little vessels. The Dr told us then that it was a lot of fluid and a little tissue. The surgery took about an hour and a half (they did his circumcision too). Dr. Chen came out and told us that everything went great. He said I highly doubt this is cancer, but I'm still going to send it off. The results would be in the next Monday. I gave him a huge hug. He hugged me back - We love Dr. Chen!
We ran down to the cafeteria to eat a little while they got Baylor settled in the NICU. I was NOT prepared for what I saw when I came back up. My almost 10 pound baby had tubes and chords all over him. He was still on a ventilator.
Warning - sad part coming up. But remember at this point we knew he was fine. The night of his surgery was very hard and emotional. He kept waking up crying. Because he still had the tube in his throat no sound was coming out. He would open his little mouth to cry but only tears would roll down his face. Still 5 months later I am crying picturing him. Matt and I both broke down at this point. Our nurse was so amazing though. She gave B some more pain medicine. Then she let us stay past visiting hours so we could see that he was asleep for the night.
They pulled his ventilator out Tuesday around 10:45 am. Around 4:00 pm they let him start eating again. Being the fighter he is he ate exactly the amount he had eaten before surgery! They also took the IV out of his head that night. He was still hooked up to monitors though.
On Wednesday they started preparing me for him to go home. They are serious at Children's. I had to watch a video on why car seats are important and get trained in CPR before I could go. All day they kept saying maybe tomorrow.
We didn't tell anyone this, because of course when I called Thursday morning and the nurse told me the surgeon said couldn't come home yet I was disappointed. I kept having to remind myself HOW INCREDIBLY BLESSED we were. On Thursday when of the nurses mentioned to me that if he didn't go home Friday it may not be until Monday. They don't discharge much on the weekends. My heart sank because Sunday was Christmas.
Called the hospital Friday morning and the nurse said come get your baby. :) I prayed the whole way there that none of the other parents would be there. Baylor had been the last baby admitted, but he was the first one leaving. The rest of those sweet babies would not be home for Christmas. The nurses were so sweet watching us get him dressed to take home. They told us they don't get to see many babies go home. Once again - we are SO blessed!
So we were all 5 home for Christmas and doing great! Monday, Dec. 27 I got the official word that B's mass was benign!
On Dec. 30 I went for a follow up with my OB. I am sooo amazed at how God worked out all the details in B's life before he was born. B's surgeon Dr. Chen is head of surgery at Children's. I kept wondering how we were so lucky to get him. B was originally scheduled to be born on Friday, Dec. 16. There were a lot of C Sections scheduled that day so my OB moved me up a day. Based on my history she didn't want it to be "too busy". The Thursday that B was born there were two babies in the NICU that had been waiting for 2 days to see Dr. Chen. The NICU Dr. asked him to look at B while he was there. Had B been born on Friday it might have been Monday before we got any results as to what was going on. It would have been a few days later for the surgery, which means he would not have been home for Christmas.
I know this was long, for those of you who actually read the whole thing. :) I want what we went through to be a testimony of prayer. It was the prayer of others that got us through it all. I feel so incredibly blessed after this journey. God has shown me faithfulness. I hope one day Baylor will read this and see how blessed he is. I hope he will use his story to show God's love.
I will update on the heart condition after we go to the cardiologist in June.
I do want to say thank you again for all of you that prayed for us. It was truly a blessing everyday to read the facebook messages, notes, texts, and listen to your phone messages. We are so blessed to have such a wonderful, Christian support system. Love you all!
The first question people usually ask me is if we had any clue that he would have any difficulties. We did not. As far as I knew he would be a healthy baby from the beginning. My last ultrasound was at 20 weeks. I am very thankful that nothing showed up then because that would have been a long time to worry about all the what ifs.
I went in at 9:45 am on Thursday, December 15 for a noon C-section. I had blood pressure issues (dropping low) with my epidural, just like I did with my other two C-sections. I had several Epi Pens to help with that. We were lucky enough to deliver in the new building of the hospital. My whole pregnancy I had heard how in the operating rooms they would pull a TV screen over to the mom while they were bathing, weighing, measuring, etc. the baby. I was in a lot of pain during the C-section, and had not been with my previous two. It felt very "rough" and I had A LOT of pressure in my chest. The Dr.s were having a hard time getting him out. Matt and I could tell by the way they weren't talking that something was wrong (and they never pulled that TV screen over). The only medical staff that was on my side of the curtain was the nurse anesthetist. Bless her! I kept asking her what was wrong, telling her my chest was hurting, and looking at her crying. She kept rubbing my arm and reassuring me. Baylor's time of birth was 12:08. He weighed 9 pounds, 12 ounces.
Finally Dr. K (my OB) came around to my side and told me that B had a mass on his side and was breathing rapidly. We later found out that the mass measured 10 cm by 6 cm. They wheeled him by me in the incubator as they rushed him to the NICU (he looked just like Kaiden). Since they didn't know what the mass was no one could hold him and they didn't even bathe him. I went into the recovery room and Matt went to be with B. My other two kids were with my parents waiting to see their new brother. My parents finally took them home when we realized it would be a while.
They finished running tests on him at 3:30, and told us we would need to wait on a surgeon and cardiologist to view the results. We were still unsure at this point what the mass was. It could have been anything cancer, an organ, lymphatic mass, etc. We were told if it was the lymphatic mass it could be wrapped in his chest cavity (they would have had to break his ribs), cancerous, have a blood supply, and lots of other unimaginable things. In the mean time the recovery nurse took me by his room to peek at him on the way up to my room. Matt was still staying with him. One of my best friends (Jennifer) came to sit with me, which was SUCH a blessing. In that situation you just worry about your children. My parents had the two oldest, and Matt was with B. Luckily Jennifer was wise enough to know I needed that support. Jennifer was amazing. She knew just what to do and immediately went into action being my advocate. Her personality normally is to sit back quietly, but boy did God give her a bold, but very polite voice that day.
I was in the recovery room from right after he was born until 3:30. It was like time stood still, but sped up at the same time. I was on drugs :) and had had several epi pens to help with blood pressure. I can't really tell you what I did for that long. I know I updated facebook, texted, and called a few people. I do remember laying there thinking, I have this baby that I have only seen as he zoomed by me, but wow I am already deeply in love with him. The rest of the time I spent in prayer. I made a lot of "promises" to God. I am sure He just smiled down at me for those. For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 I also remember running through "what ifs" in my head.
At 8:00 pm (8 hours after he was born) the surgeon from Children's (Dr. Chen) came in my room. He said based on the x-rays it was a lymphatic mass (think over production of a lymph node). It was not wrapped in his chest cavity (praise), but he would not know until the operation if it was cancer or had a blood supply.
He also told us B has a heart condition. His aortic arc grew the wrong way during development. Some people go their whole lives with this condition and don't know they ever have it. The only time it usually causes problems is when they start to eat solid food. The problem "over corrects" itself by wrapping around the esophagus. It can cause extreme reflux. We will go to a cardiologist in June to get more information on this. We've been told that less then 1% of people that have this condition have to have surgery.
Our wonderful pediatrician also came that night. Since B was in the NICU he was not officially on the offices rotations. Dr. A came anyway. It was so reassuring to know that he had seen B. He told me that he was basically an "uncle" in this situation. Hearing him tell me the surgeon we had been assigned was the best was exactly what this momma needed to hear that night.
I did get to go by and peak at B again that night (thank you Jennifer). But picture a post C-section mom, hasn't slept after the surgery, on drugs, with a catheter, with an iv pole, nauseous from the meds, post several epi pens, in a wheel chair. I'm not sure how many minutes I lasted in his room before I feel asleep in the wheel chair.
The next day around 10:30 am I was able to hold B for the first time. It was such a wonderful feeling to touch and hold the child I had hardly seen but was already so in love with! They also let him eat for the first time that day.
B continued to do well other then the mass. The Drs scheduled his surgery for Monday, Dec. 19. We were going to be a "fit in" since it was scheduled on the weekend so we didn't know a time. Saturday the neonatalogist mentioned that since B was doing so well he might be able to visit me in my room. Of course I jumped on "his might" and said when? My other two were coming at 4:00 that night and I wanted everyone together. When they got there B was in my room. They said he could stay with me until I went to sleep. So I sent him back after his midnight feeding. :)
I spent most of my time at Brookwood in B's NICU room. Since we were in the new building he had his own NICU room. It had a couch and a recliner. Matt and I would go there in the morning and I would sleep on his couch. All of the emails, calls, and texts of support were what got me through all of it. I really had a calming peace about the situation. We had such a wonderful medical staff. They explained everything to us in wonderful detail. No question was too small or big to ask. They were never too busy to help, answer questions, etc. That's not to say I didn't have a few "Just had a baby, that's having surgery at 4 days old" crying moments.
Sunday, Dec. 18 he was transferred to Children's. They took him by ambulance. When the Dr made rounds that morning I was at the door packed and ready to be discharged. I wanted to leave with B.
At Children's we had THE BEST nurses. On Sunday he was assigned to a nurse that only works a few shifts a month. We just happened to hit her at that time. It was such a blessing. B had her Sunday 3 pm - 11 pm, then she came back in Monday morning at 7 am and stayed until 11 pm that night. Since he was a surgery patient on Monday he was her only patient. It was wonderful to have a consistent person during the scariest time.
They quit his feedings midnight on Sunday to prepare him for his surgery. Monday morning the OR called up to the NICU about 9:30 am and told the nurse to prepare B for surgery. I was so glad he didn't have to wait all day without eating.
His surgery started about 11:00 am. They let me carry him from the NICU to the OR. It was so hard to hand him over, but I felt confident that he was in the best care possible. I remember feeling such a peace about it.
I was so thankful for the friends that offered to keep my other two that day so my parents could be there. B had a FULL waiting room of people that loved him.
One of the Drs came out half way through and told us there was no blood supply in the mass. That was such a relief to know they wouldn't have to reroute his little vessels. The Dr told us then that it was a lot of fluid and a little tissue. The surgery took about an hour and a half (they did his circumcision too). Dr. Chen came out and told us that everything went great. He said I highly doubt this is cancer, but I'm still going to send it off. The results would be in the next Monday. I gave him a huge hug. He hugged me back - We love Dr. Chen!
We ran down to the cafeteria to eat a little while they got Baylor settled in the NICU. I was NOT prepared for what I saw when I came back up. My almost 10 pound baby had tubes and chords all over him. He was still on a ventilator.
Warning - sad part coming up. But remember at this point we knew he was fine. The night of his surgery was very hard and emotional. He kept waking up crying. Because he still had the tube in his throat no sound was coming out. He would open his little mouth to cry but only tears would roll down his face. Still 5 months later I am crying picturing him. Matt and I both broke down at this point. Our nurse was so amazing though. She gave B some more pain medicine. Then she let us stay past visiting hours so we could see that he was asleep for the night.
They pulled his ventilator out Tuesday around 10:45 am. Around 4:00 pm they let him start eating again. Being the fighter he is he ate exactly the amount he had eaten before surgery! They also took the IV out of his head that night. He was still hooked up to monitors though.
On Wednesday they started preparing me for him to go home. They are serious at Children's. I had to watch a video on why car seats are important and get trained in CPR before I could go. All day they kept saying maybe tomorrow.
We didn't tell anyone this, because of course when I called Thursday morning and the nurse told me the surgeon said couldn't come home yet I was disappointed. I kept having to remind myself HOW INCREDIBLY BLESSED we were. On Thursday when of the nurses mentioned to me that if he didn't go home Friday it may not be until Monday. They don't discharge much on the weekends. My heart sank because Sunday was Christmas.
Called the hospital Friday morning and the nurse said come get your baby. :) I prayed the whole way there that none of the other parents would be there. Baylor had been the last baby admitted, but he was the first one leaving. The rest of those sweet babies would not be home for Christmas. The nurses were so sweet watching us get him dressed to take home. They told us they don't get to see many babies go home. Once again - we are SO blessed!
So we were all 5 home for Christmas and doing great! Monday, Dec. 27 I got the official word that B's mass was benign!
On Dec. 30 I went for a follow up with my OB. I am sooo amazed at how God worked out all the details in B's life before he was born. B's surgeon Dr. Chen is head of surgery at Children's. I kept wondering how we were so lucky to get him. B was originally scheduled to be born on Friday, Dec. 16. There were a lot of C Sections scheduled that day so my OB moved me up a day. Based on my history she didn't want it to be "too busy". The Thursday that B was born there were two babies in the NICU that had been waiting for 2 days to see Dr. Chen. The NICU Dr. asked him to look at B while he was there. Had B been born on Friday it might have been Monday before we got any results as to what was going on. It would have been a few days later for the surgery, which means he would not have been home for Christmas.
I know this was long, for those of you who actually read the whole thing. :) I want what we went through to be a testimony of prayer. It was the prayer of others that got us through it all. I feel so incredibly blessed after this journey. God has shown me faithfulness. I hope one day Baylor will read this and see how blessed he is. I hope he will use his story to show God's love.
I will update on the heart condition after we go to the cardiologist in June.
I do want to say thank you again for all of you that prayed for us. It was truly a blessing everyday to read the facebook messages, notes, texts, and listen to your phone messages. We are so blessed to have such a wonderful, Christian support system. Love you all!
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