I was overjoyed when I found out I was pregnant with my third child. I was amazed at the number of people that were confused that I would want to get pregnant after already having had a girl and a boy. "So you already have a girl AND a boy?" they would ask. When I would answer "Yes", they would then ask "Then why would you want another baby?". I would just always say "My kids are nice people. I want to add to the group."
My pregnancy with her was difficult in absolutely every respect. I spent most of the second trimester and all of the third trimester having really painful Braxton-Hicks contractions, so when the slot came open for an induction at the hospital, I begged for my OB/GYN to ink down my name.
My labor and delivery with her was definitely the most tumultuous as well, but after about 10 hours of labor versus the 18 I'd had with the other two babies, Sally made her entrance. Out came Sally weighing 7 pounds 8 ounces and 20 inches long with cheeks for days. She was delicious in every way. We were excited to take our little bundle home from the hospital.
I had always nursed my babies. I knew that, as long as I was able, despite the extreme pain for me right at the beginning, it was the best option for both momma and baby. During my nursing days with the older two kids, I had done a lot of research on how to nurse correctly to make sure baby was getting enough and how to avoid the discomfort of incorrect latches and such the like. I had even helped other people navigate the world of nursing, so I felt totally comfortable nursing baby number 3. She seemed to do so well, but her pattern for feedings was different. She did what her pediatrician described for me as "cluster feeding" as in, she would nurse smaller amounts but for longer stretches of time followed by longer periods of rest. This was new to me, but she was still wetting and soiling diapers at the suggested rate, so I just let baby do her thing.
I started to notice something though. Sally started falling asleep just a handful of minutes after she began to nurse. It was very difficult to keep her roused. She didn't seem to be eating much, and I didn't feel her drawing out very much milk, so I tried to give her a bottle. I thought maybe just the close physical contact was so soothing to her that she was just snuggling and going to sleep. She wouldn't take a bottle, though. I attributed this to a sort of bottle nipple aversion and just figured she preferred nursing.....until one Monday. She was 20 days old.
I always had small babies, and, for whatever reason, my babies always LOOKED even smaller than they actually were. I was often asked all 3 times if my little bundles were preemies. None of them were. They were all born at 40, 38 and 39 weeks respectively. So when my baby looked "a little small" to me after a couple weeks post delivery, I really wasn't alarmed until day 20. Something had happened between the night of day 19 when I put on her pajamas and the morning of day 20 when I went to change her outfit. I saw bones. All of them.
"What?!....no.....I don't think this is right. I don't feel like she should look like this. This is TOO skinny. I don't feel like I should be seeing ribs through her chest......something is wrong."
So, knowing that some of my Facebook friends are medical personnel, I appealed to social media. I have a friend from high school who I referenced in a different post. She commented on my status encouraging me to just have Sally weighed - that it would not draw any ire from the nursing team at her pediatrician's office. I had expressed on my inquiry to everyone that she had her one month checkup on the upcoming Friday, but this friend told me in a private message "If you're worried, don't wait until Friday. You can always drop in to your Ped's office without an appt for a weight check."
A healthy 3 week old baby will consume about 2-3 ounces per feeding. Sally was only taking in about 10 ml. That's an amount smaller than a bottle of nail polish. That's all she would take and then she would fall asleep.
So I packed up my baby and headed to the pediatrician's office. When the nurse undressed her and put her on the scale, I gasped. She looked even worse under the lights....and then came her current weight flashing on the scale's little display - 5 pounds 8 ounces. Sally had lost a third of her body weight. I began to tear up. I felt like a failure. I racked my brain trying to think of what I had done differently with nursing her than I had done with the other two children that had nursed very successfully...nothing. My poor baby!
She sort of solemnly wrapped Sally up in her blanket and handed her back to me. We headed to an exam room where I waited for the doctor. When he came into the room, we went through rounds of questions that yielded no answer. Then this sweet old man held out his arms for my tiny, sick baby and laid her in his lap. He silently unwrapped her and very promptly but gingerly wrapped her back up again. He looked up at me and broke his silence with "I want you to drive to Pensacola right now. You can go home and very quickly pack a bag, but then head straight to the ER there. I will call ahead so they know you're coming. I want you to drive because you will be able to get there faster than an ambulance."
"FASTER THAN AN AMBULANCE?! I need to be faster than an ambulance?!" I thought. My eyes were wide open with fear. My baby was officially in danger. I fought back tears while I waited for the last bit of instruction and then loaded her into the car to make the 30 minute drive home to collect a small bag and get in the car with Sally's dad for the trip. I made several phone calls to the important people in my life to beg them to begin to pray.
When I got to the house, Sally's Grammy opened the door. She was taking care of the older children, and everyone was in position for getting Sally to the hospital as quickly as possible. She pulled back a corner of the blanket around my baby and then started to cry. Then I fell to pieces for only a matter of seconds before the importance of my assignment overtook me. I had to leave with Sally. I had to be faster than an ambulance. It was time to go.
I don't remember the trip there, but I remember sitting in the busy waiting room of Sacred Heart Medical Center in Pensacola. I found myself getting annoyed with all the coughers and non-hand washers that were being seen before my baby. I went to the desk multiple times after our check in just to make sure that I hadn't missed our number. Finally our turn came.
We went back to the exam room where the doctors asked me similar rounds of questions to the ones Sally's pediatrician had used. Their prospects for what was hurting my baby were grim to say the least.
"She's very weak and severely dehydrated. We need to get a line in her to get some fluids in her. Then we're going to run some tests."
The nurses came in and tried with all their might to get a needle to successfully penetrate a vein. Blow. Try number one exploded the vein in her hand. They tried the other hand. That vein blew. They proceeded to try both feet as well and then 3 different spots on the top of her head. She was too weak to cry for the first few, but by the end, my baby was letting out these little squeaks begging us to stop. My heart was broken.
When they came in to cathedarize her, they required me to move away from her to a stool against the wall. Her tiny body writhed around in pain while she squeaked out the biggest cry she could muster. My baby was in excruciating pain, and I HAD to let those people hurt her. There was nothing I could do to ease her pain. I sat on the stool not blinking. My hand reached up to Sally's dad's. He was standing next to where I sat. We both just stared silently at the baby on the table. I was later informed that the nurses were alarmed because, when they cath'ed her, absolutely no liquid came out.
So many people came in and out of that room asking the same questions as the person before, and they were all perplexed.
"We want to rule out meningitis. In order to test for that, though, we have to do a spinal tap. Because she is so small and so young, she will have to be awake for the procedure. You will have to leave the room for this because it has to be a surgically sterile environment."
Then the doctor explained to me what a spinal tap actually is further cementing the horror in me when I came to grips with the fact that Sally would be awake for this.
We were directed to some chairs far down the hall from the room where they were performing the procedure. After a couple of minutes, I heard an absolutely blood curdling scream. I looked at her dad "OH MY GOSH! DO YOU HEAR HER?" I asked with emphasis - though I could not utter more than a whisper through my angry, horrified tears. "That's not Sally. That's a bigger baby. That's a different baby" he told me trying to reassure me. But there's this thing with a mother and her baby's cry. You always know which one is yours. You can pick your baby's cry out of a crowd of screaming infants. THAT cry.....was from my baby. THAT cry meant they were shoving a 22 gauge needle into her tiny and very awake little back. I just sat there and cried.
Very soon after that, we were ushered back into her little room where I grabbed up my baby and cradled her while I worried and prayed.
It took a couple of hours to wait for a room in the PICU to open up. The hospital was up to the gills with sick little people and sick big people alike. During our wait, they informed us that the spinal fluid was crystal clear. We were not facing deathly meningitis, so that news was good, but the doctors still seemed so confused. This was very unsettling to me. When they would come into the room, the expression on their faces was always very urgent concern. They could not figure her out.
Our turn came to go to a room upstairs....finally. They got Sally hooked up to more machines and inserted a feeding tube. Then into the room came a pretty red-headed nurse with a giant smile on her face. I couldn't help but wonder if she realized how sick my baby was, and if she had, if she would be smiling so big. She quickly went to work standing over my baby's bassinet and untangling the spaghetti plate of wires. She did this over and over again and kept the smile on her face. I decided to be thankful for her smile because she had been the only one to offer one during the entire day's events.
As the evening wore on, Sally's dad stepped out of the room, so I was there alone. The head pediatric physician entered her room and offered me a quick greeting. He then stood over Sally's bed and just stared at her. I had been used to the medical team saying at least something to me about their opinion, and I wanted to start a repoir with this man as well, so I said "She looks pretty bad, huh?" I had totally expected that he would give me a very canned, diplomatic response that they were going to help her every way they knew how - that they were working hard to figure out what was going wrong - that she was in good hands....SOMEthing.....no. He just kept his gaze fixed on her little body, sighed while he shook his head and said "...yeah.." and then turned and left the room.
My baby was dying right in front of my face, and not even this man with all of his years of experience and all the state of the art equipment in that hospital could figure out how to stop it.
This is the first time this image has appeared anywhere even remotely publicly. I have looked at it many times and have been unable to have any reaction except to burst into tears. Even now, I feel ill.
This picture was actually taken at the end of our second day at the hospital. By this point, she had been receiving nutrition via a feeding tube for an entire day, so she had begun to fill out a tiny, tiny bit.
So this is what that doctor looked at so hopelessly.
We spent the next few days signing endless numbers of papers giving permission to the hospital to run absolutely every kind of test they had. Every time they ran a test, the results would come back totally normal. They checked her blood. They checked her spinal fluid. They checked her heart. They ran tests to see if she was a very mild case of Down Syndrome....everything. There was one last test that I just can't remember. Every single doctor in that place was scratching their head trying to figure out what was wrong, and their last resort was a test that would require that she be be given a general anesthetic. We were given very clear warning that the anesthesia alone could compromise her health so the running of the test was our decision, but they wanted to try if we were willing. "No." I said. "No. I don't want to do that one. All of these tests are coming back normal. I just don't feel like this one is going to give the answer. I'm sorry I just don't want to do it. I just have this feeling that you're not going to find anything." So that same physician mentioned above looked at me and smiled a small smile. "You know, I've been doing this a long, long time" he said. I braced myself for a chiding for balking at his medical knowledge, but then he continued "...and I have been proven wrong several times by a mommy's intuition. That intuition is strong. You should trust it."
Part of me was thankful that he felt I'd made the right decision but this mental celebration was quickly followed by a fear that I might just be wrong.
As luck would have it, after sleeping in a chair on our first night in the hospital, my back decided to seize up, and my sinuses revolted, so that just added to the difficulty of the situation. There was that smiley nurse though. Every day she would come in and untangle Sally's chords, and she would talk with us about our other kids and our lives away from the room we occupied just then. She would also update us on everything she could. She would break things down and explain what the next step would be. On day 4 of our stay, she informed us that the speech pathologist would be paying us a visit. My brow furrowed because......Sally did not use speech. She was 3 weeks old. She did not talk. This made me skeptical, but the SP came nevertheless.
I will never forget the wavy haired brunette coming into Sally's room. She scooped my baby right up and scooted herself back into the rocking chair in the room. The smiley nurse stood at staunch attention over her shoulder watching every move the Speech Pathologist made. The SP touched a bottle nipple to Sally's lips and then slid it into her mouth. Sally's chin bobbed for just a second and then stopped. "OH!" the Speech Pathologist exclaimed. Then she kind of smiled smugly as if to say "These people are going to be so relieved, and I am SO excited to tell them this". She did more wiggling and then SUCK! Sally drew in some of the formula. Then she did it again, and then she stopped. The nurse sort of hunched forward as if to cradle Sally with the top half of her body while the baby lay in her lap. "Okay" she explained "This is called 'failure to thrive'. We do not have a way to know why this happens. There is no way to prevent it. It just happens sometimes. What has happened here is that she gets sort of lost when it comes to eating. Babies use a suck, swallow, breathe reflex when they eat. This pattern allows them to sort of eat and breath at the same time to maximize their energy. Sometimes, though, babies just get.....off track. They get mixed up on which thing to do next, and it just wears them out so they end up using more energy than they should. They tire out before they're full so they don't eat enough.....This is what has happened with your baby. So we just have to reteach her how to eat." She did not seem remotely alarmed. She did not seem like this was at all insurmountable. It was just a thing. It was a totally fixable problem.
Sally was going to recover. There were no congenital, neurological or cardiovascular anomalies in her body. Just this weird, slightly rare but not unheard of one of "failure to thrive". The SP continued to talk giving instructions to our sweet red headed nurse about the process for reteaching a baby to eat. The steps were very simple. She could and most likely would make a total recovery from this, and I should feel no guilt, because this was not caused by negligence or ineptitude on my part. It was just one of those crazy things.
Over the next two days, the smiley nurse came into Sally's room more times than I can count. She would go through her same routine of untangling all the leads while she cooed at my baby. Then she would spend hours and hours wiggling a bottle in Sally's mouth per the instructions given by the speech pathologist. With every feeding, Sally would suck down a little bit more formula until the feeding tube wasn't needed any longer. Soon Sally was off of every monitor except the one charting her heart rate. That nurse was tireless. That nurse showed love to my baby and had a presence that could nearly calm a soul in the heart of a hurricane.
By day 6, Sally had begun taking a couple ounces per feeding. She was beginning to show weight gain, and all her vitals were very steady. I was given a strict regimen for how much she should eat and for how long and how often. It was a fragile situation still, but she had been given the help she needed to get back on track - to find her way so her little body could grow.
During the middle of the morning, we were informed that Sally was being given papers for release. I took those and my instructions and cases and cases of formula the hospital gave to us, and we headed to the car. We stopped at Red Robin across the street so I could eat real food.
And then our next stop.....home to the biggers. I had gotten to see my older children just a couple of times in the last week, and I couldn't wait another minute to kiss their faces and hug their little bodies. I was bringing their baby sister back home to them. Sally was going to be just fine.......
.....until she wasn't.
More tomorrow.
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