I was pregnant very soon after the fact in May. We were very surprised but very
happy. My oldest (a son) being 16, my daughter 14 and my twin girls were going
to be 9 soon after our baby was due. Yeah, I know a big age gap. This baby was
going to be spoiled and we all couldn't wait to take part in spoiling. I am 36
and my husband is 42. I was worried about our ages but everything during my
pregnancy had been going very well. We decided against the amnio testing to test
for birth defects. We could never abort no matter what might show up. We now
wish we would have had the testing not for abortion reasons but to be ready and
be better informed for the birth. Knowing what was wrong may have made a
difference. (Believe me I think a lot about what might have been).
I have had high blood pressure since my first pregnancy back in 1988 and have
been on medication since. My blood pressure went up and was up for a couple
days. My son had an accident. He dropped 150 pounds of weights on his big toe
and I took him to the emergency room. Where he had to have his toe nail
surgically removed it was pretty bad to watch your child in pain. We also paid
our insurance by check via the mail 3 months prior. I find out they never
received our check and we had been driving for 3 months with no insurance. I was
very upset trying to get our insurance re-instated. I cried, begged, pleaded and
had to get stern but we got our insurance back and thank goodness at a
reasonable rate. Needless to say the blood pressure was elevated. I called my ob
doctor telling them of the high blood pressure. He of course wants me to come to
the hospital to be checked out. I had been on the run for 2 days I knew I had
not taken in enough liquids but I had no clue I was dehydrated. I get to the
hospital and find out my blood pressure was actually good but I was dehydrated
and having contractions. They did testing and the contractions were not actually
progressing labor. It was due to my dehydration and they found out via ultra
sound that my baby boy "Brendan" had too much amniotic fluid in the sac with
him. (Yes we had him named for a few months by this time) It was Dec. 10th I
spent 2 days in the Wheeling Hospital. Brendan began having periods where his
heart rate dropped but came right back up. So after 2 days they decided to send
me to West Virginia University (Ruby Memorial) where as they said " I would be
in better hands and so would Brendan".
I traveled by ambulance (I never care to do that again) to Ruby Dec. 12th. They monitor do ultra sounds and they see that Brendan's heart rate was running way too low. They kept deciding to wait. I had a steroid shot to mature his lungs and they wanted to wait 24 hours to get the 2nd shot in me to help mature his tiny little lungs. They waited too long. Brendan's heart rate was down to 70. They rushed me to the Operating Room around 5 am Dec 13th. I woke up asking to see my baby. They kept blowing me off. I was groggy and on pain medicine from the emergency c-section. I remember asking my mom over and over how is Brendan and when I could see him. She didn't really give me any answers. My husband was not there he was at home with our other 4 children and he had to go to work. He made his way over to the hospital as soon as he could get there. Finally I told him ...."I want to see my baby" I got loud and they finally listened to me. I started to get out of my bed...they said " no no we will take you bed and all". I finally got to see my beautiful baby boy. They informed me they had a hard time getting him out of me. I had adhesions so badly and they had already waited too long to take him..in my eyes. He was not breathing and they worked on him any where from 10 to 14 minutes. After 10 to 14 minutes of cpr they got him back. He was on the ventilator and began to have seizures. I knew my precious beautiful baby boy was very ill. I could tell he also had down syndrome. I work with individuals that have down syndrome. They are such loving precious people. I knew that this only made our Brendan even more special! We talked with doctors about his heart ...all babies with down syndrome have heart problems. The doctor assured us his heart problems were fixable. But...we would work on that once they took care of his head. Brain scans were done. He suffered in this area. His tiny little brain went without oxygen too long. He fought and tried to make it. My beautiful baby boy Brendan lived for 5 days. We got to touch, hug, kiss, love and I got to hold him from Dec. 13 to Dec. the 18th. During this time I am groggy and begin to fever. I know it was as high as 104 and there are hours out of days I simply do not remember. I do remember waking and asking every time"can I see Brendan now". They wouldn't let me see him while I was fevered. I was heart broken and wept for I knew deep in my heart I had very little time to tell my beautiful baby boy how much Mommy loves him and needs him! I did not want Brendan to suffer. I asked is this hurting him, is that hurting him, is he in pain? They assured me he was not in pain. They gave him medicine for seizures he was having. All of my family and my husbands mother were there. We all took turns seeing, touching and telling Brendan how much we love him. My other kids were so sad to see him like that but had no clue really what we were all in store for.
I was still in and out with fever, and from my back clear across my abdomen clear over to the other side of my back was covered in a red rash and burning hot to the touch. I also itched in that whole area. My mom never left my side unless my husband was there with me. Thank GOD my mom loves me and looked out for me! (I love you mom.) I had the bikini cut so I had staples across the lower part of my abdomen. Every time I went to the restroom I had this liquid seeping out from my stapled area it was yellow looking and didn't smell very well. I began getting a big red spot under my belly button about the size of a medium potato. It began to turn black looking bruised and the skin became wavy. Like the skin on a baked potato. It sure didn't smell like a baked potato though. The skin fell off that area and it began to seep. I kept telling my mom...." mom there is something wrong" "something's wrong with me" "this stuff is leaking out of me and its not normal" she had brought it to their attention several times. They took a pen and marked how far the rash was up on my abdomen. When the rash grew out of the pen mark area they marked it again. My mom said to them " we need to find out what's causing this and do something besides mark it with a pen". They blew it off not seeming concerned. This is where I do not remember so many things that took place. My temperature was high they put me on cooling blankets and packed me in ice, I remember. That is when they wouldn't let me see Brendan I remember waking up and begging " please let me see my baby". The next thing I remember is telling the doctor (one of the many I saw) something is wrong this place on my abdomen is leaking and its painful. He removed one single staple to my recollection it was as if my water had broken. Liquid gushed out of my abdomen and it didn't smell good at all. That is all I remember. I don't even remember them cleaning me up. The next thing I remember is talking with doctors. Some where saying no she doesn't have infection and this one doctor came running in saying " yes she has infection she has puss pockets and needs to go to surgery right away". They took me into surgery 24 hours later due to the anesthesiologist not being available. I do not remember much more accept waking up occasionally asking to see Brendan and asking my mom to push my button on my pain medicine because I hurt so badly. My family had to be called in on Dec 15th they told me Brendan was not doing well. I remember going over and holding him with all his tubes and wires. Telling him how much mommy, daddy, his brother and sisters love him. When I held him his blood pressure went back up. I felt so good. He knew my touch. He knew my voice. He knew he was LOVED and wanted! He stayed and fought until Dec. 18th when they called my room saying " Brendan's not doing very well we need you to come to the NICU". I will never ever forget what I saw that horrid day. Brendan was on the counter top so lifeless and pale a lady was doing cpr on him. I saw blood coming out of his nose. I was in a wheel chair or I would have fallen to my knees. I will never forgot the words I spoke. I said " STOP! Let him go he has suffered enough!" I sobbed and asked to hold him. He took one last tiny little breath in my arms. It was his last and my heart was breaking the tears streaming as I told him "Mommy loves you and wants you to be at peace....rest now my beautiful baby boy" My husband wasn't there but my mom was. I held him as long as they would let me. Blood coming out of his tiny little nose every time I moved him. I couldn't bare to see it. I turned my head asking my mom .."please wipe him mom". They asked me to let them have him so they could clean him up. I reluctantly gave him to the nurse. I handed him back as if he were still alive and so very fragile. I wished so badly he was alive and healthy. But I knew his brain went to long without oxygen before and during birth. It would have been selfish of me to have them continue cpr and make him suffer. Telling them to stop cpr was the hardest thing I have ever had to do.......but I knew it was the right thing to do. Now my heart was breaking, my stomach was hurting, my fever raging and I was still having lapses in my memory. We went to a room off to the side as we all got to hold Brendan and say our last goodbyes. My oldest child was the only one there. We didn't think the 3 girls could handle seeing him that way. His tiny little lips torn from that tube they had taped in his mouth. There is not a day that goes by what I do not see his tiny little battered body in mind. I couldn't give Brendan back to the nurse I fell into the chair and cried like a baby. I couldn't feel the pain in my abdomen and the rest of my body being invaded by infection for the pain in my heart. My mom gave Brendan to the nurse after we all said our goodbyes. I could have set there forever and just held him running my fingers through his soft brown hair.
My next recollection is waking up in the recovery room. I had my first surgery Dec the 19th. The day after I lost my beautiful baby boy. I was so weak and wanted my baby back. I was so dry and wanted ice chips so badly. They gave me those hard blue sponges with water on them...YUCK. But I was so thirsty I asked for more. My surgeon told my husband (I had no clue) that I was a fighter and a very tough lady. If it were not for my age and strong will to live I would not be here. My heart sank when my husband told me that. My surgeon also told me that several times over my hospital stay. I was so weak and anemic they wanted to give me a blood transfusion. I refused. They told me I had infections: pseudomonas, proteus miribilas, and Necrotizing Fasciitis. I was so scared to go to sleep. I was on oxygen and scared to death of death. I was so afraid that if i went to sleep that I would not wake up. My mom kept saying" sleep Sharm I will sit here right by you and watch you breath". I would only fall asleep for seconds and jerk waking up. I did this for 2 weeks it seemed like an eternity. I have never been so scared. I have never been so heart broken either. I was on IV antibiotics. I was on vancomycin, gentamycin, ceftazadime and flagyl. I had to be de-sensitized to the ceftazidime because I am allergic to cillins and keflex and they found out this antibiotic was the only one that would kill the bacteria. If I didn't take this antibiotic the bacteria was going to kill me. They took me to ICU and it took like 6 hours to de-sensitize me. I also had a picc line in my arm. Thank GOD for whoever invented that. I am a hard stick and my veins were all getting scarred and hardened. I was on iron pills and shots of something called peo it was a synthetic hormone injected to raise my blood count. I had to have folic acid, vitamin b 12, and vitamin c. I also had shots of a blood thinner due to my not moving much after surgery for fear of blood clots. I looked forward to my shot of dialotted before every bandage change. I had my 2nd debridement surgery on Dec the 20th. In which I aspeiated during surgery and ended up with pneumonia. That was very painful. I hurt so badly in my back with every breath I took for days. Thank GOD they got all the NF this time. It was a long hard recovery. I had a potty chair by my bed I was too weak to get across the room to the bathroom. I have never fainted before but I do think I almost fainted. I decided one day I wanted a real toilet. My mom and a nurse helped me to the bathroom and were helping me back. Everything was spinning and I could hear them talking but they sounded as if they were miles and miles away and in a barrel. My legs went like jello and I got so sick to my stomach I had to sit twice before I could make it back to my bed. I was never so glad to lay down in a hospital bed. I knew I was sick but I thought I was mourning so much over the loss of my beautiful baby boy that it was taking me over. I honestly believe people can die from a broken heart. We see so many elderly people that lose a spouse and in no time days or weeks even, the living spouse dies...I honestly believe they die of a broken heart. If it were not for having my other 4 children I fear I would have given up and died of either a broken heart or NF. I am not sure which to be honest.
I had a cut on my abdomen that was 12 inches across, 6 to 8 inches wide varied in depth in different areas, and was as deep as 10 inches. The only thing between my bowels and the outside world was a piece of mesh. I could tell by the look on my families faces and the nurses faces when they packed my wound 3 times a day that it was bad and looked bad also. (I never got up the nerve to look until I was released from the hospital and at home for weeks). I couldn't believe my eyes. I went in to have a baby and came home with no baby and big hole in my stomach. I was in Ruby from Dec. 12th to Feb. 4th. I came home with pain in the back of my leg thinking it was just my muscle from finally walking after I mustered up the strength to get out of bed. The pain in my left calf was unbearable. I called the nurse that was coming to my house twice a week to make sure my mom and husband were giving my iv antibiotics correctly and to check my wound. She suggested I go to my local hospital...that was a waste of time. They gave me a pain shot and a blood thinner shot and wanted me to make my own appointment the next day (because it was a weekend and the ultra sound people won't come in for patients from Wetzel County on a weekend). They wanted me to come in for another blood thinner shot the next morning. I said, " let's call Ruby and see what they think we should do maybe I should just go over there; they have ultra sound people there all the time". That is where we ended up. I had blood clots from my knee to my ankle on my left leg. I had a blood clot in each lung also which is deadly! I was in the hospital again from Feb. 9th to the 18th on blood thinners by mouth and an iv drip. I of course still had to have my wound packed 3 times a day. My mother had a few disagreements with doctors (interns, residents etc) during my stay. She made sure they were sterile and took good care of me ....I thank GOD for mom or I may not even be here today. I am still on blood thinners and have a hole in my stomach. It is healing; they are very pleased with my progress. I am still in so much pain the sides of my wound where the skin puckers and the nerves and muscles are coming back hurt me so badly. I finally got some pain medicines that helps on my appointment March 16th. I still have to have another surgery. I am sooo scared. This surgery has left me with a hernia that has to be fixed and I have to have plastic surgery to fix my stomach. I am working on getting my iron level up high enough so that I can give my own blood for my next surgery. My surgeon says I will have a large blood loss. The way my luck is running I would prefer to have my own blood as opposed to blood that may have something else in it to make me even worse off than I already am. My children are worried about this next surgery I would love to tell them don't worry I promise you everything will be ok. But I cannot do that because I won't lie to them. I keep telling them to pray that everything will go well. There is not a day that goes by that I don't thank GOD for letting me live and thank him for letting us have Brendan for those 5 days. Deep in my heart and the back of my mind I wonder why...how...could a mothers body do such a thing to such a beautiful baby. I don't know that I will ever find the answer or forgive myself. My husband and children...my whole family have been great through all of this. I was in the hospital during Brendan's memorial. I couldn't even go to his memorial. My husband holds me and lets me cry on him anytime I need to. He has been wonderful but there are things..feelings I have that I cant tell any of my family. Writing it here may be a release for me. Maybe it will take some of the pressure that I feel in my chest away. I have so many maybe thoughts.....what if thoughts.....one thing I know for sure is I love my family and I miss my beautiful baby boy and I am scared to have more surgery. I also know my heart goes out to anyone that has lost a child; whether that child is 5 days, 5 months, 5 years or 50 years. I also know my heart goes out to anyone that has had NF or has suffered with a loved one that has had NF. May GOD bless and keep everyone healthy and safe! For this is something I would never wish on my worst enemy! The doctor that delivered Brendan told us himself that he is a fertility specialist he reverses tubals. He delivers 3 times a month. Brendan also contracted the Pseudomonas infection which he could not fight. I keep thinking and wondering why would someone high risk get a doctor that only delivers 3 times a month. That is a question I will continue to ask...I'm sure.