Ben Jr's Journey Day 1

Oct 26, 2011

Just like any normal day, Brasaya was off to school, and we were headed to another Doctors appointment. Dr. Dan, was my OB/GYN for all three of my children, older man, in his 70's, tells me  "your dilated 2 cm., we will see you next week, if you do not go into labor by next Wednesday we will induce labor". As we went home that day I called my aunt and she was excited and was bragging that Ben Jr. would be born on her birthday, Nov. 3. Home we went. I was miserable, 40 weeks pregnant and it was my due date.

 When we got home I went to sleep. I woke up and told my husband that I was not feeling well. Ben Sr. was all excited and said, "YES hospital time baby!!! Give me my SON!" He shouted jokingly! We decided to go to the hospital, packed the girl's bags, dropped them off at my mom's, contractions were coming, but they were very different then I remembered.

 At the hospital they hooked me up to monitor Ben Jr. and the nurses bragged about  how strong his heart beat was and how he sounded so well. 9:15 p.m. soon became 11 p.m. the nurse came in and checked me, I was dilated 3 cm. The nurse goes on to tell us that they will be discharging me and for me to come back when my contractions are 2-3 mins apart.  I told her that I thought that it would be a waste of time due to the fact of my labor's always going by really fast.

Oct. 27, 2011

Next thing I know I am walking around the labor room, rocking in the rocking chair, squatting and   screaming in pain with every contraction. My husband just told me, " walk it out, its going to be alright."  Nurse comes in and says, " since your contractions are not showing up on the monitor we need to check you again", at 1 a.m. she checked me and I was a full 10 cm dilated  Shocked she called Dr. Dan in and moved me to the delivery room. Screaming with every contraction, I was so scared, again, here I am in the same delivery room, but it was so different this time, I was bringing my son into the world, our first son. I was so ready to meet him and his room was ready and waiting for him. He would be the first grandson, great-grandson, and nephew in our family, the anticipation of meeting Ben Jr was so welcomed by so many!

About 5-6 pushes and Ben Jr. was out. Dr. Dan as always, let me do the work and deliver how I wanted, he set my son on my stomach and Ben Sr. cut the umbilical cord. I remember holding Ben Jr. and he was so perfect. Immediately nurses took him and was cleaning him and checking him. My husband looked at me and said "Whats wrong with him, there is something wrong with his hands?" I never noticed it, I looked over and seen complete raw skin on his hands and one foot. First thing that I thought of was those red birth marks. Dr. Dan and my husband were talking and Dr. Dan looked at my husband and I and said " I have never seen that before". Coming from a OB/GYN that has over 40 years of experience, that sentence was scary.

Dr. Dan ordered the nurses to call in Ben Jr.'s pediatrician. Thank God that she knew what it was. She seen Ben Jr. and then came straight to me, I was still on the delivery table! She came in and she said " Well you have a very healthy son int here but we are going to have to transfer him to All Children Hospital In St. Petersburg, Florida in order for him to get the care that he needs", then as she started to cry and choked up she adds, " By sight it looks like he has a condition called Epidermolysis Bullosa." She continued to cry, and I was in shock. First thing out my mouth was "Ok, so what do we need to do to cure it?" She began to break down and said, "There is no cure".... I am laying here, on the delivery table, just about 10 mins after giving birth and I have never heard of EB in my life. Now my son, is born with it. I looked at Dr. Harrison and I said " Thank you for getting up at 1 a.m. in the morning to come see him, I know that you have a family of your own and I hate that you had to get up for this" she cried some more and said "Thank you, no one has ever said that to me"  It was quiet for a minute and I just remember starring at the sink and I said "You know,  there is a cure and his name is Jesus, I have to give it all to God and trust that he has a plan."  Dr. Harrison replied, " Yes you are so right, Amen. I agree."  I told her, that I felt helpless, there was nothing that I could do, and when your in that moment, it is out of your hands, and there is only one thing to do and that is humble yourself to God's will.

I was moved to a room and Ben Sr. never left Ben Jr.'s side. He watched as the nurse pricked the sole of his foot to get blood and the skin rubbed right off, the nurses had never seen EB before and they were all in shock. Dr. Harrison had the nurses wrap Ben Jr. in Vaseline gauze and cotton blankets for transfer, they brought Ben Jr in my room and I got to feed him before he left on his transport. He cried and cried, every time he opened his mouth you could see that his mouth was full of blisters. He looked at me and I sang to him, " In the name of Jesus, in the name of Jesus we have the Victory" he quieted down and just looked at me as I sang to him, he was so sweet.  Through this whole time I never shed a tear. I was trusting in the Lord and I had a peace within me that everything would be alright. I thought that I would get to go with him to St. Pete, but I was not able to. I had to stay and wait at least 12 hours before being released. Ben Sr. was planning on going with Ben Jr. They were going to air lift him out, but since the wind was too strong they had to send a ambulance. So, we have a good 3 hours with our angel before transfer. (All the above took place in about 1 hour after birth)

Transport got there a little after 4 a.m. and they came into my room, they looked like a team of astronauts all suited up, ready for take off.  The sweetest people you will ever meet.  All Childrens Hospital sent 4 Pediatric EMS transport members since it was considered a severe case, and there would be no room for Ben Sr. to go. They explained everything and said that they would take the best care of Ben Jr. as possible. I asked which one was the driver and I told him, " Now you are carrying precious cargo, make sure our son gets there safe and make sure that when you get there, the nurses and doctors know what they are doing."  He told me that I can rest assured that he would make sure Ben Jr. was in good hands with someone who knew about EB. I felt safe and secure, especially when he mentioned, that he says a prayer before every transport and had to hug me before leaving. I want to add, that during this time, there is nothing that I could do. We were clueless as to what EB was, I had no intentions of this happening, in my mind I was going to have my son, go home and we would go right back to work and everyday life. I had to trust that this medical team and hospital were what was best for our son. It was a decision that I put in God's hands. Little did I know, our normal everyday life died that minute that Ben Jr was born." Forever changed by EB",  is an under statement.

Ben Sr. watched as they prepped Ben Jr. for transport, well actually he filmed the entire thing. When they left he followed them out and talk to the drivers, they assured him many times that he was in good hands. When Ben Sr. came back up to the room, he cried, like I had never seen a grown man cry before. He said, "that's my son, I don't want him to go alone, he is going to be scared I need to be there with him, but I cannot leave you, I have to have both of you well, I cannot live with out you both"

We slept until about 8 a.m. Transport called us around that time and said that they made it safely and that Ben Jr did excellent on the way there. There was a nurse assigned  to Ben Jr. named "Melissa" and she knows about EB very well. She was a primary nurse for another EB baby that was born in 2010. They gave me a number and said that we could call her with any questions.  All the nurses there at the hospital where we were came in to talk to us and recommended that we do not google EB. Dr. Dan came in and we talked about everything he said that I was free to go after 3 p.m. and he laid out rules for me to follow, I was to answer his calls daily so he could check on me, etc. My grandparents came up to the hospital and we prayed together, I talked to my father that I had not talked to in about 6 months, my sister in law googled it and she was in shock and completely scared. I was discharged and we went and picked up our daughters and off to St. Pete we went. 3 hour drive. We only had one car at the time and it was not in good shape, so we took my grandparents car.

When arriving there, Ben Jr. was on the 6th floor NICU...  When we finally got to see Ben Jr., he was like an angel. His nurse Melissa was like a bull dog! She was strict to any one and very, very organized. She had everything in order. His wall above his bed was completely covered in neon signs that read "NO TAPE, DO NOT TOUCH ME ask my NURSE first." The girls, they did not see the bandages and wires strapped to him, they seen their little brother. I remember sitting in a chair and listening to the girls talk to Ben Jr. and I over heard the nurses behind me say " Why are there 4 of them back here, they're only allowed 2 back at a time?" The other nurse responded, " they need a moment together, he most likely will not make it" ... (the devil is a lair)

We left Ben Jr. after he ate and returned to sleep. We went out of the NICU into a room with a huge table, like the ones you see on TV where they have big board meetings. We sat down with a group of Dr.'s and skin team that treated Ben Jr. when he first arrived. They explained to us that they thought that it was EB and that it was severe. They went on saying that they could not get him to eat, he blistered within minutes, they were going to need a dermatologist to come in a take a skin biopsy to send off for testing. skin team would do dressing changes, a plastic surgeon was coming to see Ben Jr. as well, he had 2 around the clock nurses and a A.R.N.P that was specifically assigned to him..etc.etc.etc. They asked us if we had any questions and the first thing my husband asked was " Will it get better?" they replied, " I have seen some that did and some that didn't, it all depends on the type. There were 8 doctors, 6 out of the 8 had never seen EB before. My question was," what are we looking at as far as health and over all life span", one lady doctor said " Everyday dressing changes and care hourly, as far a life span it ranges, lethal in 24 months to 30 yrs" When they left out of the room for us to have a minute, I broke down like I never had in my life, my husband and I held each other and cried and prayed together.

We had no money on us at that time, my family and  friends let us borrow money until we could get it back to them. Finally we were in touch with the Ronald McDonald house and they had a room for us to stay in. They were across the street from the hospital. Going to see Ben Jr. before we went to lay down for the night, the nurse told me that she was worried, Ben Jr. vomits everything that she tried to feed him. I told her that he was probably lactose like his sisters and maybe she should try soy milk.We left Ben Jr. for the night and his primary told us that she would not leave Ben Jr. with someone that she didn't trust, and she made sure that Carrie knew everything about him and what to do. We went to the RMH and got settled. Carrie called me to inform me that Ben Jr. drank about 1 oz of soy formula and kept it down. =)

All this in one day.

 My next blog I will include learning dressing changes, RMH, doctors  nurses, bad experiences, meeting another EB family, and our 3 weeks at All Childrens Hospital in St. Pete, FL.... and the story begins.

Sirena