Mom to TanaLee
Born November 13th, 2009, Died June16th, 2010
Just two weeks after getting married I found out I was pregnant. My husband and I always talked about having children, but little did we know getting pregnant would change our lives forever. When I was about 2 months along the ultrasound tech noticed that my daughters umbilical cord wasn't positioned in the middle of my placenta. Doctors came in to assure me that this wasn't necessarily a bad thing that would hurt my baby, but it just meant that I would need to eat more than usual because the baby would have a harder time getting nutrition because of the placement of the umbilical cord. I left the hospital clinic that day feeling nervous but I trusted the Doctors knew what they were talking about.
Another month rolled by and it was time to find out the gender of my baby. I was thrilled with the thought of finally getting to see my baby and get to call it a boy or a girl. The ultrasound tech searched for a while since my baby was a bit stubborn and liked to be curled up in a ball. After a while we finally got the baby in a position so that we could see, it was a girl! I was overwhelmed with joy. Finally the joys of being a mom could start; I can go out and buy everything needed for that baby girl to come home to.
I had an OB appointment soon after this day because I had such bad morning sickness that I was vomiting blood and unable to gain much weight. I met with two Ob-gyn's and a nutritionist. I was scared because at this point in my I should have been showing and not vomiting as much as I was. I weighed in at 125lbs at 4 1/2 months along and had a very small belly, usually something you might see on someone who is about 2-3 months along. I was sent home with a medication to help with my nausea and strict directions on taking the medication first thing with my morning meal and a diet plan to help me gain more weight. I also was asked to come in to be seen for a follow up appointment to see if I gained any weight. I went straight to the store after that appointment to buy Ensures, something elderly people drink to maintain or gain a healthy weight.
The time came to see the doctors and see if any progress was made. I went to have an ultrasound and weigh in. I lost two lbs and if that wasn't bad enough, when I went to have my ultrasound done the tech wouldn't really say much about how my baby girl looked. She simply said, "I'll be back with the doctors so that they can talk with you." For what seemed like forever, finally the doctor came in to talk with me about what they saw in the ultra sound. I'll never forget his words, “I’m sorry to inform you with this news but, your daughter isn't making much amniotic fluid, she's actually very low. This can be dangerous because it can send you into preterm labor." I absolutely lost it, he then continued, “We think it is in your best interest and that of your baby to have you admitted into the hospital to be carefully monitored." I couldn't believe this was happening. I went from "this isn't concerning and this is normal", to “you may be having your child in the next few days." At this point I was just a few days from being 6 months pregnant. It doesn't take a scientist to figure out that having a baby this soon is highly dangerous for both mom and baby.
I called my family to let them know that I was being admitted into the hospital due to problems with the baby that what was really going on was yet to be seen. Once I got a room, doctors came in to talk with me about what they wanted to do and how they were going to do it. The next thing I know I am in a hospital gown and getting needles put in my skin for labs and equipment hooked up to me for monitoring. Mean while I'm told to remain calm.
Eventually another doctor entered the room and told me they had a strong feeling that I was in the early stages of Pre-eclampsia. To be sure they wanted to take a few more blood samples and a 24 hr urine sample. At this point I started to recall reading in one of the pregnancy books I had, the section on things that can go wrong in a pregnancy and I was too scared to read that section so I closed the book. The doctor came back a while later and told me the results of the blood work and said that by tomorrow they would have a full answer about what was going on with me.
The next morning had arrived and a few doctors came in to discuss their findings. They informed me that yes I was in early stages of Pre-eclampsia. They explained what that would mean for me and my baby and that I would be staying in the hospital until my baby was born. I was devastated. How did this all happen? I did everything my OB told me and researched like crazy to make sure that my habits were safe for my daughter. I don't drink or smoke...why is this happening? The doctors also told me that the day would be full of changes, starting with me going on bed rest and going on a diet to try and lower my blood pressure. They also informed me that I would be getting steroids in my hips to help my daughter develop a bit faster just in case I would have her in the next 24 or so hours.
By mid morning a Nicu doctor came into my room to speak to me about the risks, the options and what was all about to unfold. I was so not ready to have my baby, it all came so suddenly that I had no time to prepare. I told the Niccu doctor that I didn't know what I wanted to do and asked him to come back at a later time. True to his word the doctor showed up later that afternoon. I was in shock and asked for more people to join this Nicu doctor to explain what everything meant. Finally I made a decision, full support was the route I would take. This means doctors would do everything to support my baby in hopes that she lives, she would be very small but they would try. That evening one of the night doctors informed me that things were continuing to look worse and that I would need to have my baby the next day. They moved me to the 13th floor to prepare for the birth of my daughter.
At first the decision was for me to have my daughter naturally, I wasn't too thrilled about that idea because she was so little and I was afraid for her safety. The doctors went ahead anyway to induce me and see if they could get her out that way. Turns out that after a while when my body should have reacted to pitocin it did not. So we went the c-section route. At approx. 10:07am my daughter TanaLee was brought into this world officially. I had to wait about 4-5 hours to see her due to being so drugged up and her needing special care. After I was brought into my room the nurse didn't hesitate to make me get out of bed. I decided I wanted to see Tanalee anyway so I got out of bed, fresh out of major surgery. When I was brought in to see my daughter I was still drugged with medication so it impaired my ability to fully see were my daughter was. When I finally made out where she was I couldn't believe what I was seeing. My daughter was so small, her entire hand was the size of a fingernail. She weighed 1 Lb 4 oz. My eyes swelled with tears because reality sank in that now we would need to see how much of the stuff doctors said was a risk for 25 weekers would actually happen.
"The first three days are the most crucial", said the attending neonatal doctor," after that the risks lower by the day." Three days went by and nothing seemed to have affected my little bundle. I was very optimistic by mid week. Then the first hurdle came, my daughter coded or had respiratory distress that was bad enough that doctors were forced to give CPR and do chest compressions for 25 minutes. Normally doctors would give up if the baby hadn't reached normal sats within five minutes of their procedures. For some reason they pushed on for another 20 minutes passed that. My daughter was without proper volumes of oxygen for 25 minutes! Thankfully she was able to recover from her spell and we found no sign of a hemorrhage in her brain. Not long after this coding it happened again but this time there was some bleeding in her brain, doctors told me and my husband that the bleeding was not so much that it would really affect her. I was relieved and spent the rest of the night with her until nurses asked me to leave for shift change.
TanaLee continued to have ups and downs both with respiratory problems and infections. To name a few she came down with NEC and MRSA within a week of each other. One doctor told us that her situation looked bad and they weren't confident that she would survive. She did, and that same doctor came to me and said, "In the 30+ years that I have been doing this, never have I seen a baby have these infections at the same time and survive." I beamed at the thought that my baby beat odds that doctors were so sure that she wouldn't make it that they had a "care conference" with my husband and I about possibly just letting her go off the machines and pass away. I think about the doctors and think, "how do you know what is the right decision? When did you ever stand in my shoes?
My daughter had multiple surgeries on her intestines and abdomen in hopes to fix the effects that NEC and done to her body. The surgeries were successful and she made it out doing better than expected. She did however deal with some negative effects, the doctors told us that she would accumulate fluid called, "ademia". She sure did, and continued to battle with it for the rest of her life.
There came a point where things were looking really good. So good that doctors were saying they believed she would be home within a month’s time. She had slowly come off strong addictive medicine that was given to her due to surgeries and the like. She only needed to learn to feed by mouth and to be lower on her oxygen requirements. (She had finally after five months gotten onto high flow nasal cannula.) Things were looking so great, I had finally after four long months been able to hold my baby girl for the first time. She was progressing so quickly, doctors were really impressed with her ability to go through a storm and come out the other side doing fairly well.
Then tragedy struck again, my daughter was affected by ROP ( Retinopathy of prematurity). It is a condition in which abnormal retinal vessels that grow mostly in an area where normal vessels have not grown in the retina. My daughter was not really affected in one eye but was treated none the less and the right eye was damaged a bit, the doctors saw what they call, "partial detachment" meaning she would most likely be blind in that eye but be able to see outlines at most. We had her treated as best they could but there really wasn't much they could do since the damage was already done.
Some time had gone by and another sudden thing happened. My daughter had been off TPN for nearly three weeks and she suddenly had a spike in her bilirubin numbers. It is basically the amount of bacteria and toxic fluid in your body that your liver is supposed to dispose of. The doctors watched it for a few more days and it got worse. I finally got so upset that I begged and pleaded with the doctors to do something, anything. I asked them to call old classmates or colleagues and ask people they knew to find out what might be going on.
Finally a doctor in Seattle, Washington responded. He felt they could help and that to him and his team she might be stages of liver failure based on the numbers. We decided with the doctors that the next move would be to have TanaLee airlifted to the children's hospital in Seattle. We figured that if in fact she was going into liver failure and needed a new liver it was best to have her sent there. The Nicu we were at specializes in preemies but anything past that is kind of out of their scope.
Once we got to Seattle my husband and I settled into a Ronald McDonald house since we would be there for a long while. The doctors in Seattle worked long hours studying my daughters chart from the other hospital back home. After they felt they had a good idea of her story they began to make changes. She was re-intubated because they felt that she was burning a lot of calories trying to breathe instead of grow. They also put her back on TPN. I was so upset by this but again the doctors are just trying to fix the problem. We soon found out that my daughter was in fact in need of a . She was going into liver failure. My family and I were completely crushed with this news but we pressed on because through all of this the doctors said that "there is hope." TanaLee was placed on a transplant list as 1b. According to the liver experts this is a high listing, she ranked 1rst in our group of states and 3rd in the nation. Even with such a "high listing" we waiting with no good results. My daughter went in and out of infections, deactivating and re-activating her on the transplant list. Still we waited in hopes that one would come.
One June 11, 2010 my daughter was on her last day of antibiotics because of an infection. Suddenly without warning she started to ooze blood out of her . (She had this done way back on one of the surgeries for her intestines. It was the kind that part of the intestines barely sits outside the body with a bag surrounding it.) She had this happen before but the doctors just wanted to inform me. I didn't take this very seriously at first since in the past when her clotting factors were low they would give her blood product and the blood would stop oozing out. As the day progressed the doctors told me that it was getting worse but still wasn't 100% concerning. Later that evening I went in to visit her and still the blood hadn't stopped but it wasn't getting worse. I went home thinking this will get better. I called before I went to bed as I had done in routine everyday since she was born and still I got the same answer..."Nothings changed, go to sleep we will call if things get worse." That morning around 1am I received a phone call from the on call fellow telling me that they are starting to get worried because things have not seemed to improve. He told me that they were going to try and transfuse more product and see if that doesn't do the trick. He told me not to worry about coming in but if I was needed they would call me. The next day I got a call around 7-8am telling me that I should come in because the doctors wanted to have a care conference with my husband and I. Reluctant but willing we went to the hospital. When we arrived we were met with several doctors some of whom we recognized and some we never met. They told us the dreaded sentence that we had heard months before, "we don't think she will make it through this. Do you want to remove support?" I freaked out and told them that she had lived through things doctors swore she wouldn't or couldn't. With tears in his eyes the liver doctors said, "Felicia we are going to remove her from the transplant list for good this time. We can't put her back on either. You see she is much too sick and she would never be well enough to undergo such a large surgery." At this point I knew it was all over. Whether TanaLee got better or not the transplant team had decided it would not be in her interest to put her through such a tough surgery only for what? The risk of infection after a transplant is high and she didn't have the reserve and if she didn't get the transplant she would die.
We had hit rock bottom..the pain of no hope fell down my face as I cried for my first and only baby. I went into my daughter’s room with a heavy heart. What now? call family? I had imagined what this day would be like but never believed it would come. I truly believed that my little girl would beat all odds and come home with me happy and healthy. Instead I made panicked phone calls outside the Nicu asking for relatives to come and support my husband and me. We did not mention that the doctors thought TanaLee would die, just that she was really really sick. The nurses and doctors organized TanaLee's room so that a long couch could fit in along the wall and some chairs could be off to the side for extra. They encouraged my husband and I to hold TanaLee because they didn't think she would live longer than a few hours. (she had begun to bleed out of other outlets.) We carefully took turns holding our little girl, reading our favorite books to her and singing soft melodies to her. When family arrived we allowed everyone to hold her and just reaffirmed what they already knew, TanaLee was going to die soon. After hours of sitting in the room the doctors suggested that we go home and get some rest. They said they would call if things suddenly changed. I didn't want to leave but my body did otherwise.
The next day bright and early things were much worse. The doctors tested a urine sample and found red blood cells were present. They asked me what I wanted to do. I in turn asked them what they thought was happening and asked them what the options were. It came down to the fact that TanaLee was in complete liver failure and there was no fixing the situation. Out of the options given to me I decided to remove support since my daughter was in a coma state on this day and that it was the lesser of evils. My family and I spent time saying our good byes and then the RT came in to remove the support. Around 10:30 am on June 16, 2010 my daughter’s heart stopped beating.
We fought so hard as did she to keep her alive. We did everything we could to give her a chance. Unfortunately her little 7 month and 3 day old body could not go on. Medicine has come a long way and can do a lot of things but it could not save my baby in time. I went and saw my baby everyday from the day she was born but still that wasn't enough. Through my grief and broken heart I hold a hope out for my little girl. I know that I will see her again but the next time I see her she will be without all of the medical problems she had before. I share this story in hopes that she will touch your heart as she did mine. I share this hoping that even though she didn't make it home with me it will show that sometimes babies are stronger then we think. My daughter was a fighter, she had good times and bad but in the end I know she is no longer suffering and that is what matters to me.
Felicia blogs at tanaleedavis.blogspot.com
You can contact her at firstname.lastname@example.org