Sleepless Nights

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Fearless

I find myself exhausted but wide awake yet again this evening, so I am attempting to get everything that has been weighing on my heart lately out in the open so that I can hopefully find some rest tonight. I am not typically one to get too emotional or (dare I say) negative in my writing, so please bear with me here... Cadence is nearly 11 months old now, and we are excitedly planning her very first birthday party! I am very happy for this milestone in her life, but I am surprised to find that the whole idea of a birthday has made me anxious and sadish, and therefore sleepless. I realized this evening that there are several reasons for this way of feeling, so I felt I should share my reasoning with anyone who has to gets to interact with me through this whole thing, because I'm sure I'm confusing people... including my poor husband who must think I've lost my mind lately. Jonathon, I apologize if you have to read my life story online before I get to tell it to you myself, but as it turns out, I'm wide awake and you're sound asleep, so such is life.

Anyway, here's the deal. The day that Cadence was born was without question the best day of my life. I cannot even begin to tell you how excited I was to finally have her in my arms. I fell immediately in love with her and knew instantly that I would go to the ends of the earth to do anything for her that she needed or wanted. I just had no idea that what she would need or want would be so extensive. Almost immediately things didn't go quite as planned. Cadence wanted to nurse, and she was really good at it right away, but she would go at it for 40 minutes straight and not get more than an ounce. We knew from pumping that my supply was doing just fine, so we couldn't figure out why my little one wasn't getting enough to eat ("we" being me, my husband, the pediatrician, all of my nurses, and all 5 lactation consultants that I worked with in the hospital basically non-stop). Cadence lost a LOT of weight very quickly and we had to stay an extra day in the hospital in order to make sure she was ok. The only way we could get her to eat as much as she needed and wanted to consume was by pumping and then bottle feeding. This was absolutely devastating to me. I had dreamed of nursing my little baby my whole life, and the gift of nursing was the first gift I wanted to give her in her little life. After bringing Cadence home from the hospital, rented pump in tow, I diligently tried to get her to learn how to nurse. We tried everything from a lap cup to little tubes taped to me, to using a syringe to "finger feed" her. We bought the most expensive type of bottles that were "more natural" so that she would stay used to the shape of a breast. I worked with women from La Leche League over the phone, and we hired an in-home lactation consultant who charged us a bazillion dollars to come work with us regularly. Nothing worked. In the mean time, Cadence still hadn't gained a single ounce back and was beginning to look very sick. (I didn't realize then how sick she looked, but now when I look back at those photos it is all too obvious.) She was very weak and quite floppy, almost like a rag doll. She had none of the typical uncontrolled thrashing of limbs that you expect when a newborn gets mad, she just laid there almost motionless. The doctors believed that this low muscle tone was due to her weight loss, and thought that if we could get her weight up, she would gain muscle strength as well. So, in order to get her to gain enough weight, we had to increase feedings. Feedings were already stressful enough, but now they were required every 2 hours 24/7. Which for us meant that I would attempt to wake her up, try to nurse her for as long as she would go on each side (sometimes 40 minutes per side) then immediately pump (which took about 20 minutes) and then bottle feed her everything I had pumped. Then I had to sanitize all of the pump and bottle parts so they would be ready for the next round, which typically began just as soon as I was done sanitizing them. Somehow in the middle of this routine I was supposed to fit in our almost daily doctors visits for weight checks and whatnot. Oh yeah, plus I was supposed to shower and eat plenty of good healthy meals to help my supply and "make sure you're sleeping when she sleeps!" Well guess what. The whole idea simply was not possible. But every weigh in when she hadn't gained weight and every lactation meeting when she hadn't nursed properly was another reminder that somehow, despite nearly killing myself to keep my promise that I would do anything for my precious little girl, I was failing miserably. It didn't matter what I did or how hard I tried. I couldn't do it right, and it seemed that I was actually killing my baby girl. I remember when I hit rock bottom. Cadence was nearly 2 weeks old. I was standing in the shower with my husband (my mother was caring for Cadence, don't worry!) and I was crying and I told him "I think we need to give her away." Jonathon said "what do you mean?" and I said, "I'm not a good enough mom. I can't do this. Someone else would be better for her." Of course my wonderful husband held me in his arms and assured me that no one else in the world could love her the way that I do and that I was doing everything humanly possible for her. Shortly after this break down we came to the realization that our child was not going to be a typical baby, and therefore we needed to toss our ideas of typical parenting out the window and find new techniques to allow ourselves some sanity. So I made the heartbreaking decision to quit trying to nurse all together to save time, and exclusively pump for Cadence. Much to my surprise, this made Cadence a much happier baby because she could eat all she wanted when she was hungry rather than trying unsuccessfully to nurse, and because she wasn't working so hard to try to nurse, she was burning fewer calories and therefore started picking up some weight. Since she gained a little weight, the pediatrician allowed us to switch to feeding her every 3-4 hours, so I finally got a little rest.

 Cadence at 3 weeks old

 5 weeks old

 4 weeks old

3 weeks old

Unfortunately though, as she gained weight, she did not gain muscle tone as we had hoped. She was still a floppy little rag doll baby. So when Cadence was 2 months old, we took her to see a pediatric neurologist and she began physical therapy. The pediatric neurologist suspected that she had had a perinatal stroke at the end of my pregnancy and that it had caused her to have Cerebral Palsy. This was, of course, devastating news. So the pediatric neurologist ordered an MRI of Cadence's brain and neck to see where the stroke had occurred and how extensive the damage was. Watching the nurse put my sweet little girl to sleep with anesthesia for the first time as she whimpered and looked longingly at me for help was the hardest thing I have ever done. After an endless wait in the waiting room, we brought her home from her MRI to recover. We were supposed to go in for a follow up appointment to hear the results several days later. However, only a few hours after we arrived home we received a phone call to come back into the pediatric neurologist's office immediately. Terrified, we drove back down to the office where we were told that instead of finding evidence of a stroke, they found a tumor on her spinal cord and her brain stem. That was the day that my world completely caved in.

Since then we have learned that her tumor is essentially inoperable due to the extremely high risks involved (full paralysis, loss of the entire sensory system, brain damage, permanent bone structure damage to the spine, loss of the ability to swallow, etc.) and we aren't even able to do a biopsy. So everything that we do is an educated guessing game. Should the tumor begin to act malignant, we would not have the option of radiation because of how young she is, so most likely they would have to operate in spite of the risks, and follow up the operation with chemotherapy. Thankfully, her tumor has been acting completely benign so far. Cadence has had 4 MRIs now and is scheduled for her 5th on July 28th. We found out at her last MRI that her tumor had begun SHRINKING! Without any treatment at all. We have learned that a lot of her problems as a newborn were caused by the tumor, including her inability to nurse, as well as her muscular problems. She is still suffering from fairly significant delays, but she is slowly but surely pushing through. On Christmas eve at 4 1/2 months old she moved her head from side to side for the first time, marking her first big achievement. 2 weeks ago at 10 1/2 months she balanced herself in a sitting position for the first time. We are optimistic and have set a lofty goal that she will be able to walk independently by age 2, but that is a very lofty goal for her.

I am so proud of Cadence and all of her achievements. She is so strong and such a trooper. She is so determined to accomplish each little task and to overcome every challenge. I remind myself daily that God doesn't give us anything that we can't handle, which encourages me to know that even on the days that I don't think I can do it, God knows that I can, but more importantly God must know something about how strong Cadence is or else He wouldn't have given her this challenge. I must have a pretty unique kid.

So, with all of these wonderful accomplishments and all of the good news, why have I been feeling so sadish? I think it's mostly because of her upcoming birthday. I know a lot of moms whose babies are turning 1 right now. They all seem to reminisce about the day they went in to labor (which I never got to do) and the miraculously happy time it was when their baby came into the world. I don't have that. When I remember the time surrounding Cadence's birth, my stomach turns in knots and I get very anxious. I remember all of the stress and worry and I feel like a failure all over again. I don't want to celebrate an anniversary of those types of feelings. In fact, I'd rather avoid it all together.

And then there are the what ifs. What if, at Cadence's upcoming MRI, we discover that her tumor has spread? What if they find that she has developed hydrocephalus (a condition where fluid puts pressure on the brain, which they have been concerned about the possibility of it developing in Cadence's brain)? What if Cadence has to wear a brace in order to learn to walk for the rest of her life? What if she never learns to walk at all? What if her head always tilts to one side and her classmates think she looks funny and make fun of her? What if, at future birthday parties, she doesn't have any friends to invite because she is the weird kid? And if that's the case, then this might be her only "good" birthday party ever. So I'd better do it right. And of course the worst "what if".... what if her first birthday party is also her last? I can't even bear to think of what I would do. But the idea crosses my mind all the time. It's humbling really, to realize that not a single moment can be taken for granted.

I assure you that I have not written all of this as a cry for pity or even for comments of reassurance... I guess it's merely to allow you a glimpse into the heart of a mother of a child with special needs. I know now more than ever that God will provide. He hasn't failed us yet. I know He has big plans for my little girl. And I know that with His help I will pull together the faith and the strength to celebrate Cadence's birthday as a milestone. She has come so far and she deserves to be celebrated. To anyone reading this who may be attending Cadence's little party, please join me in celebrating an amazing little girl by looking forward rather than looking back. Back wasn't pretty. Forward is looking better and better every day.

 8 months old

10 months old and sitting on her own for the first time in her baby pool!