My daughter Gabriela is probably the most amazing thing that has happened in my life, and without her I would definitely not be the person I am today. I found out I was pregnant in December, 2004. We had been trying for about 4 months to get pregnant, so when we got the positive result, we were thrilled! Things seemed fairly normal in the beginning. I had morning sickness, etc. just like any other pregnancy. But come mid January, I was SICK! I went into my doctor's office three times over the course of 3 weeks and all they kept telling me was that it was winter and I had a "virus" and that it just needed to run its course. Well, by the third week of being sick, so bad that I could not get out of bed some days, I went in to my doctor demanding to know what the heck was wrong with me. I told them I felt just like I did as a kid when I had mono (my throat hurt, I had muscle aches everywhere, I could not get out of bed, etc.). They again assured me that it was just a virus and to let it run its course. Well, they were somewhat right. After a while, I did feel better, but then things began to be a little weird. I was losing weight rather than gaining (which being my 4th child I knew was risky). I had some morning sickness after my first trimester, but not much. Unfortunately, the doctors just dismissed the weight loss and contributed it to the morning sickness. Again, I was told not to worry.
Well, at my 20 week ultrasound, things got a little scary. We were so excited to get to see our baby and find out the sex! We went in, got all ready, the technician started doing the ultrasound, and I immediately knew something was wrong. She looked at me and said, "I'm sorry, your dates must be WAY off because your baby is too small and you have hardly any amniotic fluid." She couldn't tell the sex or anything yet--AT 20 WEEKS! So, we were instructed to go home, stay on bed rest for a week, pump myself full of fluids to get my amniotic fluid up, and come back in a week for another ultrasound. I was worried because I knew my dates weren't off. We had planned this baby and I knew everything down to ovulation dates, etc. So, there was no way I was wrong. So, totally freaked out, we went home to return in a week. Well, when we returned in a week, we were told that the fluid was still low, the baby was about 3 weeks behind in growth, they thought she might be a girl but still couldn't tell 100%, she had echogenic bowel, and her liver was enlarged. So, I was told to follow up in another week with a perinatologist where they would do a more in depth ultrasound of my baby and also refer me to a geneticist because they thought it was one of three things: 1. Downs Syndrome, 2. Cystic Fibrosis, or 3. (the worst case scenario according to the docs) a viral infection. Well, I went in for the ultrasound at 22 weeks, and upon looking at the baby, things were worse. She had not only echogenic bowel, IUGR, low fluid, and an enlarged liver, but she also had a chest that was too small for her heart and lungs, brain calcifications, microcephaly, and abdominal ascites which they thought was a sign of heart failure. So, in an attempt to find out exactly what was going on with my little girl, we opted for an amniocentesis that day. Little did I know, the results would take 2 weeks to receive! So, I literally sat on egg shells that entire time.
I'll never forget the day I got the call! I was in my car driving to pick up my older kids from their grandmother when the doctor told me she had the results. I immediately pulled over because I wanted to be able to focus. Good thing I did because she said the news was not good. There was no Down Syndrome, or CF, but there was a very concentrated level of the CMV virus in my amniotic fluid. She said this was exactly what we were NOT hoping for and that the prognosis was not good. I was scheduled to see the geneticist the next day to discuss my "options" and to learn more about the virus. I was then asked what I planned to do with the pregnancy. I couldn't believe I was asked that! This was my baby! A baby I planned and tried for months to conceive. A baby, that despite all the complications, God had planned for us! I was keeping her!!!
Well, being 24 weeks at this point, I guess that's the last week that a pregnancy can legally be terminated, etc., etc. So, the pressure kept up! I was asked 3 more times over the course of that week whether I was sure I wanted to keep the baby or not. God, that really ticked me off!! I was starting to think that finding out about my daughter's conditions were more of a curse than a blessing since there was so much pressure and negativity around us at that point. We were told that because of the issues present on her ultrasounds and the levels of the virus in the amniotic fluid, not to get our hopes up too much that we will get to bring her home. We were told that she would be severely brain damaged and had a very debilitating future ahead of her.
The weeks following are a very big blur to me. I slipped into a bit of a depression for about a week where I just couldn't even bring myself to get out of bed. I wanted nothing more than for my baby to be healthy and "normal" and it just really got me down. I seem to remember waking up one morning though and just thinking that there was no way I was going to let the doctors be right! I was going to fight for my little girl! I was going to set up the nursery, and I was going to plan for her to come home just like my other kids. Maybe I was setting myself up, but I just had to do it. I felt like if I lost hope, I was failing her.
So, anyway, I was pretty much seeing the doctor every 2 weeks until about 30 weeks and having ultrasounds at each appointment. At about 30 weeks, I was told that my daughter's lungs were so small that we needed to be prepared for either a still birth, or for her to pass away shortly after since with lungs so underdeveloped, there would be nothing they could do for her. They were too small for her to be able to use a ventilator, etc. Still, I couldn't give up on her. We began going to the doctor about twice a week for non stress tests at that point because the risk of preterm delivery is much higher in CMV babies. Things looked about the same until about 32-33 weeks when we started noticing decels in her heart rate during Braxton hicks contractions. I was sent over to labor and delivery so many times after that for stress tests where they would actually use pitocin and bring on contractions to see how she would respond. The fear of having to have a c-section was incredible at that point. Well, she always managed to fake us out and did just fine with the contractions. At 35 weeks, I was at home one evening and felt like my water had broken. I went in to labor and delivery and was told that no it hadn't broken and to come back when I am in labor. Well, for 3 more days I was back and forth to the doctor because I KNEW my water had broken. They finally checked me and lo and behold, I was right. Now I was freaked out because my water had been broken for so long and that meant that now I had to be placed on antibiotics, pitocin, and my baby was going to be born at 35 weeks.
My labor was pretty much normal and uneventful. Gabriela was tolerating the contractions just fine, the epidural worked great, and after 8 hours, she was ready to meet the world. Well, because of the risks involved with her birth, I was wheeled into the operating room to deliver her along with 11 doctors, nurses, NICU staff, etc. I was being prepped by the nurses to not be shocked if she doesn't cry, etc. It was very rushed and busy in the room. Well, she didn't want to wait long to be born and after 2 pushes, was out...and SCREAMING!!! Gabriela Elisa-Grace was born July 14, 2005 at 7:25am weighing 5lbs. 4.5oz. and measuring 17 1/4 inches in length. Boy, were the doctors wrong!! She looked great! I didn't get to see her right off because they had to assess her, but when the nurse finally brought her over to me for a quick glimpse, she was PERFECT! They quickly rushed her off to the NICU, finished up with me, and took me back to my room where I spent a little time recovering. I got to get up after a short while and they wheeled me to the NICU to see my baby. She was gorgeous! She needed no oxygen or anything and her color was great. She was tiny to me, but the nurses all thought she was a great size. She did have IVs going in already, blood was being drawn, etc., so the first time in the NICU was a little crazy for me. It was all a little overwhelming. I had to sign all sorts of consent forms for them to treat her and do whatever they felt was medically necessary. They had her separated from the other babies in the NICU, caution signs all over the place, biohazard warnings everywhere, etc. It was all very intimidating. The nurses all wore paper robes when working with Gabby and it was just really frightening for a while. After our visit, I was wheeled back to my room, issued a breast pump (which was a major fight because they didn't want to loan me one due to the CMV), and I went back to check on the baby every few hours when I was allowed to. We had a little trouble breast feeding at first, and she didn't want to take too much from a bottle either, so they did end up putting a feeding tube in to help her out. That only lasted a few days and after trying and trying, she started taking to the breast feeding very well.
Gabriela stayed in the NICU for a week to run tests and pretty much just monitor her growth, etc. She was seemingly otherwise healthy. There was no jaundice, her liver did not appear to be enlarged anymore, the ascites was gone, she was obviously breathing ok, so the issues with her lungs were no more, her bowels were working fine, etc., etc. Everything that appeared on the ultrasounds when I was pregnant seemed to have just disappeared. Well, except for the calcifications. They did a CT scan while she was in the NICU and the calcifications were still there. We were told they could mean nothing, or they could be the source of future struggles with her. It was just a wait and see thing. She was seen by a Ped. Ophthalmologist while in the NICU and there was no sign of retinitis which was a great sign. She did, however, fail her newborn hearing screen, which was to be expected according to the doctors. We were prepared for that. They drew more blood to send off to check the CMV antibodies, etc. in her blood and told us when she was discharged that they would call us with those results. Her Infectious Disease Specialist was AWESOME and to this day I love him to death! He has been such a huge advocate for Gabby and is just a huge believer in that she will do things as SHE wants them. He has faith in her and her development and has really encouraged us to do the same.
When Gabriela came home from the NICU, she seemed just like any other baby...just smaller. She was very floppy and slept a lot though. She just loved to be swaddled and loved. Feeding was a little difficult as she would arch backwards during her feedings making breastfeeding very difficult. As time went on, she developed colic which was agonizing at times, and she was just "different" in some ways. I'm not sure how to explain it really. There was a long period of time where my husband and I really questioned her ability to see and thought she might even be blind. She would not make eye contact at all and did not track toys, etc. It was suspected by her ophthalmologist at first that maybe she had cortical visual impairment. We were seeing a very rude and obnoxious ophthalmologist though, and after a while, I switched to a new doctor for her. It was discovered that Gabby had a lazy eye and an abnormal pupil, so at a year, she had eye surgery to permanently dilate her pupil in her left eye. She got her first pair of glasses around that time. She is now far sighted in that eye and has astigmatism in both eyes, but without the surgery, she would have lost vision in her left eye.
She was a very good baby, but a very temperamental baby as well. She did not like to be held facing inward and would do a full backbend in my arms. I never got to really snuggle with or nuzzle my daughter after like 2 or 3 months. I had to learn to hold her facing outward so she couldn't throw herself back. She retained her newborn reflexes for a LONG time and still, at well over 2 years, had not acquired some of the reflexes she should have. She was notorious for not putting her arms out to catch herself if she fell, etc.
Her hearing loss was luckily detected in the NICU, so she was fitted for a hearing aid and began wearing it at 6 weeks old. Her loss progressed pretty rapidly and she received her first cochlear implant at 12 months old in her right ear. She had surgery again in June 2007 at 23 months for her second ear and is now a bilateral cochlear implant user. She started out with Early Intervention services in our home and was learning to sign from 2 weeks of age. She initially attended a deaf/hard of hearing preschool where total communication was used and was eventually enrolled in an auditory-oral program where she is now encouraged to listen and speak. She is really coming along with her speech! Gabby was deemed as mildly mentally retarded in 2009 by a pediatric psychologist with our regional center. She (at almost 6 years old) is on pretty much a 3-4 year old level, depending on the developmental area. Her problem solving skills are great! Fine motor is not terrible for her, but she still has a lot of trouble writing and can't cut with scissors yet (other than to make small snips). Her gross motor is not terrible at first glance, but after spending time with her, you'd see that balance and coordination are very difficult for her. She is significantly delayed in her speech, and communication in general is very difficult for her.
Gabby began walking independently at 2 years of age after using a reverse walker for about 8 months. She finally got to ditch her reverse walker at around 25 months. She wore AFOs for a while and eventually graduated to bilateral medial arch supports. It was found that her ankles are a little weak and she needs a little more support for good balance and to help eliminate the desire to toe walk, so she was placed back in SMOs. She didn't graduate out of the SMOs until age 4 1/2. She used to wear a lower extremity Theratog to help with her balance and gait, but since starting school and losing her PT services, we have discontinued the use of her Theratog. We got to feeling like we weren't sure what to do with it anymore without the proper instruction. She is still pretty wobbly and walks as if she's "drunk" at times, but she sure loves to walk (and run) now! She is 100 miles per hour and has no trouble keeping up with her older siblings!
My little girl has some trouble with eating and sleeping that have troubled us for quite some time. As an infant, Gabby would wake up all night long, and being that I nursed her until 13 months I just sort of contributed that to her nursing through the night. She was always very little, so I had no problem getting up at night to feed her. As she got a little older and weaned herself, she would still wake up through the night. I tried to "ferberize" her and let her cry it out, but she would literally scream as long as I let her. There was no end to it. She eventually learned to climb out of the crib and would run the halls at night. We tried putting her in a toddler bed, but she would not sleep by herself and would scream all night long. We tried having her sleep with my oldest son, swaddling, nightlight, no nightlight, giving her a sippy cup to sleep with, special blankets and teddy bears, reward systems, etc., etc. but nothing worked. We finally (out of desperation) resorted to medication. We tried just melatonin initially which didn't seem to do anything for her. We then introduced Clonidine, which helped her fall asleep in minutes, instead of the 2 1/2 hours it would normally take with swaddling. The only drawback--she would still wake up all night long. So, we switched to Risperdal which seemed to help a bit too, but drastically affected her appetite. That's another issue in itself. So, we switched back to the Clonidine and upped the melatonin considerably. Still didn't work. We let some time pass and finally resorted to seeing a Doctor of Natural Medicine. She ran some tests on Gabby and discovered that she had several allergies, including dairy, gluten, eggs, and a few others. We decided to cut those foods out of her diet and miraculously, she SLEPT! It was not always the entire night through, but she slept! That lasted a while and then things began to change a bit again. As she became older, she became stronger, and more and more aggressive. Her behaviors became more defiant, and she became very "busy". She was very scatter-brained and could not focus, making school and therapy sessions miserable. So, we went back to her original doctor and discussed things with him. He diagnosed Gabby with ADHD and rage and going against everything we ever thought we'd do, we decided to try medication. We started out on Adderall. It worked ok for a short while, but eventually, she was again not sleeping. She would not eat on the Adderall (which was not an option for our already tiny 30lb. child), became very depressed and would cry all the time, and picked at her fingers really bad. So, we decided to take her off the Adderall and try something else. We then switched to Tenex, which she is currently taking, twice per day. So far, she seems to be doing well.
Eating is a major issue for Gabby. She has some oral sensory issues which make eating certain foods very difficult for her. Any foods that are mixed (ie: spaghetti sauce with meat or veggies mixed in) is a major no-no. Cold creamy foods like whipped cream, etc. will make her salivate and gag. Foods with prickly textures like raw broccoli will also make her gag. She does well with dry, crunchy foods like crunchy cereal, or beef jerky. Most raw fruits are ok as well, but cooked vegetables are impossible for her to eat due to their soft texture. Tooth brushing is a really tough part of our day too. We're still trying to figure some of this stuff out after almost 6 years. Ugh!
Gabby has some behavioral issues and does quirky things like head banging and back arching when she's frustrated or upset. She throws tantrums. She picks at the skin on her fingers. She shows aggression at times when she isn't understood or can't communicate. She has NO danger awareness, which scares the life out of us at times. She's stuck her hands on the hot oven door, ran out into the street countless times, jumped off really high platforms, and thinks it's funny to allow herself to fall straight down (face forward) to the ground from standing without catching herself. She has very high pain threshold and has been known to get large injuries without even noticing. Just last summer, a door fell on her, breaking her nose and bruising her face, and the doctors didn't even want to do a ct scan on her because she didn't seem to be in pain to them and they thought it impossible that she would have an injury of that nature. It gets pretty scary sometimes and our house has come to look like a penitentiary with chains and extra locks on all the doors to keep her from taking off on us!
Gabby has had therapy in our home since she was 2 weeks of age. She had an infant teacher in our home twice weekly until the age of 3 when she transitioned to preschool. She also received speech therapy twice weekly and physical therapy once a week for 2 Â½ years in home. She has received speech therapy through the Scottish Rite twice a week since one year of age and they have been awesome with her! Until recently, we have made the trek to North Sacramento on a weekly basis for speech therapy with a Rehab. Audiologist which was also very beneficial. She also had periodic visits with nurses, vision specialists, etc. as needed but at least quarterly. Gabby also received Hippotherapy once a month for a while which was amazing for her. At one time, I totaled up the hours of therapy Gabby was receiving, and it was well over 40 hours of therapy a month! It was crazy in our house, but oh so worth it when we saw the progress!
Gabby is a very busy little girl and loves to be active. She participates in a Special Children's Sports League and plays baseball and soccer. She loves being out there with her friends and socializing and it makes me so happy to see her running the field and doing all the things we were assured would be impossible for her! She rides a bike with training wheels, and can zip around almost as fast as her 11 year old brother! She makes me so proud!
Gabby is my little miracle! She is a true lover of life! We were told she would never accomplish half of the things she has managed to at this point, and it seems that every time somebody has put a limit on her, she has totally proven them wrong. She is a very curious 5 1/2 year old, who although she "dances to the beat of her own drum" at times, is progressing very nicely in her development! She has definitely done things in her own time, and I have learned over the past 5 1/2 years to take all the "norms" and just toss them out the window. She is setting her own norms and I can't wait to see what the future holds for her!
Gabby is the light of my life and has a smile and a way about her that can light up any room! She is a handful, but one that I am SO grateful to have the pleasure of having in my life!! Life is nonstop in our house with all the therapy sessions and trying to coordinate my other kids' schedules, etc., but I would gladly double it all if it meant continuing to see her thrive!
If there is one thing I want to accomplish in my lifetime, it's to make sure that every woman on this earth knows about CMV and its effects. My wish for everybody else out there who is just starting out on their journey as a CMV mommy is to know that this disease is very unpredictable and only time will tell what the nasty effects of it are and where it will stop. Don't ever give up on these little angels! My daughter would not roll over until she was almost 9 months old, would not sit up on her own until well after a year, did not walk until she was 2, and did not say mommy or daddy until 3 Â½ years of age. But, each day is something new! She can count! She can read 25+ words! She can sing! As hurtful and as sad as it is sometimes to see my daughter not being to accomplish everything on the same timeline as her same-age peers, I've come to realize that it's ok. She is deciding on her own when is right for HER! I could talk all day about how terrible this horrible virus is, but in reality, I would never know the daughter I have today without it. As morbid as it sounds, I am grateful ;) I've seen the Rembrandts and windmills that Holland holds!!
- Shared by her mother, Cheryl
Posted: 3/20/2016 9:55:19 PM