When I was about 5/6 months pregnant my sister (whom I was living with at the time) and I both noticed I wasn't as big as I would've expected to be. I was still measuring within a couple weeks of my estimated due date, but always on the small side. When I went in for my 35 week appointment, however, I was measuring almost 6 weeks behind. We did a growth scan and sure enough, she was measuring at about 30 weeks, when I was estimated about 35 weeks. They were scheduling a 2nd scan on September 11th (her due date was the 24th) to see if she was growing and would induce on that day if she was not, however, she came on her own on August 30th - I barely made it to the hospital, literally climbed hands and knees on the the table as the nurse took down my shorts when she came out, with barely a push, in her amniotic sac. I was still in my sandals.
She was 4 lb 12.5 oz and scored 9 on the apgar, seemingly perfectly healthy.
I was concerned at the hospital that she was having problems nursing. She latched ok, although her mouth was really tiny and I have very large nipples. But she wasn't able to nurse long before she seemed to tire out, and she didn't seem to suck well. I asked for the LC, and when I gave her my concerns, emphasizing that she was a preemie, she basically brushed me off. She said I had successfully nursed another baby and shouldn't have a problem with this one. She said that new babies were tired and she'd be fine when she got home. I accepted this advice. We were discharged 2 days after she was born.
She seemed very healthy. Very little jaundice. Gained weight on the low end of normal, but still okay. I called the doctor's office after ten days because she hadn't passed a bowel movement except for the one small meconium movement at the hospital. They said it was okay, she was breastfeeding, it was normal to go so long (which is true, but I've since found out that breastfed babies should NOT go so long without pooping in the first three weeks, only after the 3 week mark).
At three months she seemed to be gaining weight okay, she was 9lbs 8oz, up from her lowest weight of 4lb 8oz, so doing quite well. However, she was a bit slow on her milestones, and had very little to no head control. They weren't terribly worried because she was a preemie, and they expected her to be a little behind.
As the next two months progressed we started to get more worried. She didn't have any head control, couldn't sit with any kind of support. And her head was shaped very oddly. Very narrow and long.
We saw the doctor when she was almost 5 months old. She had gained only a pound in those two months. The doctor referred her to developmental pediatrics and told us she thought that she might have craniosynostosis (one of the sutures on her head closed early). We got a referral to a neurosurgeon and plastic surgeon and saw them on the 29th. She did indeed have craniosynostosis and was immediately scheduled for surgery. On the 3rd of February the part of her skull that had fused early was removed, and she was fitted for a helmet to help her head grow out correctly.
From this point on, things began to get crazy. We saw yet another pediatritian (yay military health care) and this one just couldn't stop going on about everything I was doing wrong. He lectured me for 30 minutes about vaccinations (which I made very clear that I wasn't interested in doing) and then went on about how she needed to start solids (she was barely 6 months old) because she was failure to thrive and I couldn't give her enough milk. I let him know that my supply was not a problem. He scoffed. He said she was too old to supplement with formula and I just needed to push solids. I told him that she had a major gag reflex and spit up anytime anything but my breast was in her mouth. I told him that early intervention recommended she see a nutritionist. He said that a nutritionist wouldn't do her any good because she was breastfed. He basically told me that there was nothing I could do. A very frustrating appointment.
Soon thereafter I had another appointment with the developmental pediatritian. I took my sister with me to this one. Yet another doctor seemed stumped as to what I should do to help her gain weight since she couldn’t eat solids and couldn’t take a bottle. He referred us to the feeding team and a neurologist. On our way out my sister insisted we go see the lactation consultant at the hospital. On watching us nurse, she told me it looked like she had a shallow latch, and a weak suck, but that she seemed to be able to be getting something. She wasn’t entirely helpful and just showed me how to use an SNS. She said to try to pump every 3 hours to boost my supply. No suggestions on supplements or anything. She asked about Brianna’s nursing habits and when I mentioned that we coslept she FLIPPED OUT. She started going off about how unsafe it was and how she’s morally bound to tell us that we shouldn’t cosleep. I told her that we coslept safely and that I would continue to do so. Again, I walked away frustrated from someone who should’ve helped me.
My sister got me some fenugreek and I began to take it. Right away I definitely saw a change in my supply. However, it didn’t help. The only reason my supply dropped is because my daughter wasn’t able to demand enough. Every time I pumped I got at least 4 ounces. Yet even with the SNS, my daughter wasn’t able to take much in, not even a ½ ounce from the SNS because her suck was so weak.
From here on out we began to see many doctors. Neurologist, developmental pediatrician, geneticist. Lots of testing. MRIs, genetic testing, blood testing, on and on. All normal. She wasn't gaining weight, was growing slowly, and her development was extremely behind. I met with the feeding team and their only solution was to push solids. She was 9 months and we had just begun being able to feed her. She was still gagging a bit and couldn’t eat much at a sitting, which they witnessed at the appointment. But the solution was to just keep up with the solids. They told me to nurse less, and the child psychologist said that it was important to her mental and social development that we work hard on her getting solids NOW. I disregarded much of this because I knew that slowing down nursing was not the answer (I purely believe in demand nursing, when she wants to nurse, she nurses), and I couldn’t force her to eat any more than she was able to eat.
At this point we met with the Neurologist. He voiced a concern that she may have reflux and prescribed prevacid. It seemed to help some things a little bit, but her weight did not improve. Finally, around a year we finally got a referral to see the GI doctor.
At 12 months old Brianna still did not have complete head control. She couldn't lift her head past 45 degrees when on her tummy, and was still very wobbly when placed in a seated position. She was 13 pounds.
My frustration continued to mount. No one had answers. Test after test showed no answers. And she stopped gaining weight. She was stuck between 13 and 14 pounds. When the GI doctor told us to alternate breastfeeding and solids, and to add oil and supplements to her babyfood, she actually lost 4 ounces in 2 weeks. We increased her prevacid to the max dose and the GI doctor mentioned putting her on a long-term regime of Reglan.Finally, at 16 months I put my foot down with the GI doctor. We wanted a scope done. I would NOT put her on Reglan, and we were ready to go forward with a feeding tube. At this point the feeding tube had been mentioned in passing by a couple doctors, but NO ONE had recommended this as a course of action. No one. She was 16 months and 14 pounds. Her scope results came in with no indication of allergies and very little damage to the esophagus, showing mild reflux. We met with the surgeon and I said we were ready to go forward with the feeding tube and fundoplication (surgery for reflux).
She met with a new developmental pediatritian (the head of the department) at the end of January. When I asked about her possibly having cerebral palsy, he said that he didn’t think so because her MRI was normal and she was not spastic (having high muscle tone). He looked at her development. At her 15 month evaluation she tested at 2 months for expressive language, 4 months for receptive language, 4 months for fine motor, 6 months for gross motor, and between 6 and 9 months for cognitive. He said that she had global delays, and likely would be diagnosed with a developmental disability/mental retardation when she reached the age of 3. He said it wasn’t for sure, because children can make surprising gains in the first 3 years, which is why they don’t make the diagnosis of developmental disability before the age of three. But he said that children rarely made an improvement of more than 15%, which would still put her under the 70% disability level.
I walked away from this appointment with a lot of unease. I had known since she was seven months old that she was likely going to have some sort of disability that she would be dealing with throughout her life. But I’ve never really believed that she was lacking in intelligence. In the last couple months she had gained a lot of “spark”, showing a witty sense of humor, and a desire to do more than she was physically capable of. She had started making her own sort of conversational babble, though the only sounds she’s able to make are “ma” “na” and “la” sort of sounds. I believe this is because she has a lot of problems with the motor control in her mouth. She shows frustration because she isn’t able to “do” as much as she wants to. I really believed that her cognitive capability was much higher than we were able to measure. How does a 17 month old demonstrate her abilities if she’s physically unable to point, move to where she wants, or use language?
Brianna’s surgery was on February 5th. It has been exactly 3 weeks and she has gained almost two pounds. It’s a bittersweet feeling. On one hand, I’m so happy that we found what her weight gain problem was, she just needed more food. On the other hand, I am angry and filled with sorrow that for FOURTEEN MONTHS, she has struggled to get barely enough to survive. I had so much milk to give her, and no way to get it into her. However, I really believe that by breastfeeding, she is so much healthier and stronger than she would’ve been if I had stopped breastfeeding her when her weight problems began. Despite all of her difficulties, she is an incredibly healthy and resilient little girl. With both surgeries she recovered so quickly that the surgeons expressed surprise at how quickly she healed and regained good spirits. Her therapists always comment on how quickly she learns and adapts to what they are teaching her. She has a remarkable spirit and love for life. And I believe that my breastmilk is why she is thriving DESPITE all the help we received from the doctors.
If I had fed her from a bottle from the beginning, might we have known sooner her difficulty in getting enough to grow? Yes, most likely. And this makes me SO angry. Why is it that doctors cannot believe a mother when she tells them that she makes enough milk, but her baby CAN NOT get enough to grow? Why is it the assumption that the failure is the mother to produce enough milk, even though her child was premature and had disabilities that should’ve made it obvious that she would have problems getting enough? Why did I have to PROVE to those doctors that I could put more in her in the form of solids, before they believe me. And even then it took them over SIX MONTHS to accept that she needed a feeding tube. And even then, I had to ASK THEM to put in the tube. How much longer would they have waited if I had just continued to follow their suggestions? How much more would Brianna have suffered?
I now see hope. When I told her therapists that the developmental pediatritian didn’t believe that she had CP, they looked disbelieving. I can tell that THEY believe she has CP. And since they work for United Cerebral Palsy, I’m inclined to put a lot of weight on that. Her therapists have recommended her for a couple special therapies, and she’s getting a consult to get some special adaptive toys to help her play.
Brianna has made incredible progress in the last three months. She has begun to make more sounds, trying to have “conversations” when everyone is talking around her. She’s still very quiet most of the time, but she’s incredibly observant, soaking in the environment. She’s become much more confident in sitting, and on her tummy. She wants to stand much of the time now, but needs a lot of help. I don’t know if she’ll crawl, since cognitively she wants to be UP with everyone, not down on the ground. But I believe that with some assistive equipment, she will be walking before her 2nd birthday. The most notable improvement is in her interaction with everyone.
I’ve done some more research and I now believe that she has Athetoid or Diskenetic Cerebral Palsy. About 10-25% of individuals have this type of cerebral palsy. I found this description of Athetoid CP: The main characteristic of athetoid cerebral palsy is uncontrolled, slow, writhing movement of the limbs. Sometimes the muscles of the face, tongue and throat are affected, causing grimacing or drooling. Patients may also have dysarthria, a problem coordinating the muscle movements needed for speech. Uncontrolled movements often increase during periods of emotional stress and are not present while sleeping. Athetoid cerebral palsy sufferers often have a hard time maintaining posture which makes sitting or standing difficult. Additionally, people with athetoid cerebral palsy can have a hard time moving their hands to a certain spot or holding on to objects.
This sounds exactly like Brianna. I also found it interesting that individuals with Athetoid CP typically have above average intelligence. Something I have suspected of Brianna all along.
Could this just be a hopeful mother? Possibly. But a life with Cerebral Palsy is not an easy life. I don’t WISH this upon my daughter. She may never be able to walk well, she’ll always struggle with the uncontrolled motions, she may likely always have problems speaking. It will be frustrating for her, having the intelligence, but dealing with people who assume she does not. She will most likely need special equipment her entire life.
But I believe God has gifted her with a special spirit, and an incredible resiliency that she has already demonstrated in her young life. I believe that Brianna will use this disability and thrive, not in spite of it, but because of it. I believe that Brianna will be a testament to God’s grace and love that with God in our lives, we can rise above any circumstance and be happy and fulfilled, even when life gives us things that seem impossible to handle.
When life seems impossible to handle, when we're having a rough day, or have had little sleep, it's easy to ask God, "why". I often get questions on how I handle it, how I deal with it. People often say, "well, God doesn't give us more than we can handle".
The truth is, I DON'T believe that God doesn't give us more than we can handle. First, I don't believe God is "giving" us this difficult situation. The fact is that the evil and sorrow in the world isn't God testing us or giving us burdens, they're a product of a sinful world.
But I do believe that God allows things to happen that ARE more than we can handle. Because God doesn't want us to handle them. He wants us to realize that we CAN'T handle them on our own. The only way to get through rough waters is not to just survive them, but to live fully and allow these times to become a testament to His love. We need to realize that we NEED God, we can't do this on our own.
This is something that I have to remind myself of all the time. I HAVE been given more than I can handle. If it were just me, then I wouldn't be able to deal with this. But God never expects me to do it on my own. That is why He has blessed me with an amazing husband, a supportive family, and wonderful friends. But even if I didn't have them, I have my God. This is what gets me through the difficult days. I know that whatever happens, God will use this to make us stronger, and bring us closer to him.
God has given us this incredible gift in our daughter. She is not a burden, or a cross that I must bear. She is a precious gift. We have been given the great responsibility of raising her to be a glory to God.
I believe that God gives us all a special task, a calling in our lives. I've spent years searching and wondering where my talents lay, and how I should use my gifts. God has given me the answer, and a very special calling. The answer is Brianna.
