Over the next month Jillian would continue to not gain weight like she should and vomit all of the time. I was nursing her as long as she could (she would become very fatigued and would fall asleep or would have to stop from so much vomiting) I would then give her an once in a bottle so that she would get some "easy" calories and not have to work so hard. The vomit still came with the bottles too. I will never forget the look on my Aunt Sandi's face the first time she witnessed Jillian choking on milk. The sound scared me and so did the look on Jillian's face but no one was really listening to me and I kept hearing "many babies spit up." The look on Aunt Sandi's face that day confirmed that this was not "normal." By the first week of February that year Jillian had her first hospital admission. They checked for a lot of scary things that first day. We spent 5 days there and left with a child who was not puking as much as when she arrived but still was not right. The doctor that we had inpatient pulled me aside on our last night before attending changed for the week and someone else took over our case. She admitted that she was scared that they were going to have to tell us that something was terribly wrong with our baby but she was happy to see that we would be able to go home. A doctor at Children's, and no, not a resident just starting off, a well seasoned doctor was frightened with the way my child presented. I wish that I would run into her again someday. I wish I could tell her what the journey has been like since because she was the first one who really noticed that something more was going on. She referred us to GI for the first time while we were there and was the first person who really looked into why everything was happening instead of just trying to cram more milk into a vomiting child. While that hospital visit did not solve anything in changed a lot of things. Jillian went to having all intake measured (ie: I stopped nursing her and went to pumping all of her milk and giving it to her in bottles) We also then started seeing other specialists to try to help her. We followed up with GI 2 weeks after that first hospital trip and they decided that we needed to start fortifying Jillian's milk with Alumentum to try to help her gain weight (I about fell over at the cost of that... if only I knew then what the price for her to "eat" now would be)
By March we were in the hospital again. That was the visit that Jillian got her first NG tube that was used for food (during her February visit she had an NG tube for 24 hours that just drained into a diaper to get excess air and stomach acid out of her stomach)The doctor on the floor was surprised that GI wanted to put a tube in. He told us it would probably only be for a few weeks (this was a much younger floor doctor then our first one) GI said it would stay as long as it needed to. You could tell by the way he talked that he knew it would be longer then a couple of weeks. We knew we needed to do something to help our kid.
By April she was in the hospital again. This time it was to switch her from a NG tube to a NJ tube because she was still vomiting so much. Before we changed the type of tube Jillian's ped sat me down and told me we all needed to learn CPR because she was afraid we would need to use it because Jillian would choke on her vomit. Back in those days choking on vomit happened often, mainly at night, so I gave up sleeping to watch her breath and help her through the nights.
Jillian has had 9 hospital admissions, each with different lengths. She has had over 70 doctor visits to Children's alone (her ped is not at Children's, she is at Aurora and Aurora's website does not make it as easy to count dr visits) She has been in the OR 5 times since she was 7 months old and in interventional radiology more times then I remember. We see therapists weekly to help her try to catch up to her peers developmentally. Her health history is long and she is just 21mo old.
This is our life and as much as I normally don't admit it, it is different. It just is. There is no way that all of this could go on and our life be like that of a typical almost 2 year old.
Here is just a few differences:
-Last night as when we went out to dinner the waitress brought Jillian a kid's cup with water when she brought our drinks. I smiled and said "thank you" because that was the polite thing to do and because it would just make the waitress feel bad if I told her Jilli could not drink it. She was trying to be nice and I was not in the mood to explain. Mikaley ended up drinking it. The manager did come over and tell us how impressed he was with how well our kid was behaved.
-Going out to eat gets more interesting as she gets older. We have the advantage that she is so tiny so most people think she is younger then she is and are still ok with her not eating. That will change. Sometimes we get odd looks when we say she is not eating. Sometimes I explain it to people. Sometimes I say "she does not eat." That typically gets me odd looks which is not what I am going for but when I am exhausted that is all that comes out.
-Add to it that at this age most toddlers are entertained at the table by food. We don't have that distraction. We have worked hard to teach Jillian that she sits during a meal and once everyone is done eating she can sit on someone's lap. It is too hard to hold her and eat. This means that when we go out we bring lots of toys with us. Sometimes I start to feel like a circus clown pulling toys out of a bag and sometimes we are those parents who lets their kid play on the iPad all of dinner. As she gets older we may end up going out to eat less and less (not that we do a lot now). Right now she does not see that she should be eating too, however someday that may change. One of the blessings that comes from her being born with all of this is that we have not had to take food away when she was old enough to realize it. When she stopped taking bottles she was already only taking a really small amount and when she moved to the NJ tube she went to just water in bottles, which she hated and still puked so those only lasted a short time. Her oral motor skills are still that of a young infant but she has never needed more. She has done oral tastes before (less then a tablespoon) with baby food and can take food off of a spoon but those always went really badly and have never lasted more then a week before she starts to refuse to do it out of pain and a list of large side effects (she has absent seizure like events from reflux anytime she is off of her meds or has anything orally, she also has vomiting, coughing and aspirating too)
-We still don't experience this sleeping through the night thing. Her pump goes off every 4 hours... and that includes 2am every night. I joke that my kid has learned how to sleep though the night but her pump has not. She needs to still be checked on each night at 2am too to make sure she has not tangled herself in wire or it coughing/vomiting. Vomiting is far less frequent these days however it is not nonexistent.
-I want to know when it became socially normal that once you have an almost 2 year old that random strangers would ask you when you are going to have another. This just happened to me again today. I before having Jillian was unaware that this seamed to be a social norm apparently. I'll clear this one up right now... When I was little I always said I wanted 12 children. I am older and wiser now and even before having Jillian I would laugh when I was remind about me saying that when I was little. Before Jillian, Brent and I talked about how many children we wanted and how far apart we wanted them to be. Getting pregnant with Jillian was a lot of trust in God and a lot of months of crying because it was not a quick process. Now I have a medically complex kid and have not slept in 2 years. We still don't 100% know what is "wrong" with Jillian however it looks like she probably has some rare genetic condition. That changes things when you talk about having more kids. It makes you think about things differently. Maybe someday we will have another child but unless God decides otherwise, it probably will not be anytime soon. So for now when random people ask this very personal question I will just smile and say "not now"
-Your mind is different once you have a kid with special needs. I have read other blogs from other moms that talk about how you can't unlearn what you know. All of that time in the hospital changes you. It makes you callus to some things (sorry, it does) This has changed me. It had to. It has made me stronger in ways I did not know I was weak. It has given me a voice in situations I would have normally been silent it (two years ago I would not have stood up to a doctor like I did this week, I know because 2 years ago I left a BAD ob/gyn without ever telling them why I left because I did not want to hurt anyone's feelings...) It gives a new perspective to the saying "in the world but not of it." I have gotten that saying before having been a christian in a public school, however I see it now too in being a special needs mom in a sea of moms without special needs kids. I feel like in some ways I can't relate to them and they can't relate to me. This is why a majority of special needs moms feel isolated from other moms, because the two sides don't know how to relate to each other. I don't get the world of play dates and picky eaters and they don't understand weekly therapy and the weird medical language I speak. It becomes easier to separate. It makes relationships more work in a time when you don't have extra energy.
-As Jillian approaches two soon I have been thinking a lot. Stretches of time when we are at doctors a lot normally gets me thinking. I have been thinking about what I thought now would look like, what now does look like, and my thoughts for the future. Thoughts for the future are different when you have a medically complex kid. Your goals are different and how you go about meeting those goals is different. Developmentally Jillian is not where she should be. She is about 6mo behind in gross motor. Her speech is the largest delay. Jillian learns words and then looses them. We have started the testing for apraxia of speech. This means we will be seeing speech for a llllloooonnnnnnggggg time. Jillian's logic skills however are in the 75th percentile. She is a smart cookie her body just does not do what she wants/needs it to do. She also has many skills that she can do but can not do for long. Jillian can walk. She can not walk for every long. Her endurance is not anywhere close to what it should be. There is a big difference between being able to do something and being able to do it developmentally appropriately. People will see that Jillian is able to walk and say a couple of words (my kid is 21mo old and is just starting to refer to me as moma... that is a huge accomplishment at our house) they think that she is "cured" of whatever was going on when she was little. Honestly her stomach can handle less then it use to and her lungs are not as strong. She is the SAME weight as she was this time last year. She is an inch taller then a year ago however she is falling off the growth chart again. She is 3 inches shorter then she should be and at this age that is a lot. She looks more like a toddler and she is at the 50th percentile for weight for height so she does not look as tiny as she is. Her tube and belt add to that illusion too. They make her look a lot bigger around then she is. This leads to the comment "she looks healthy to me." Honestly, this comment ticks me off... a lot. I know people don't mean harm by it but it feels like they are saying we are crazy when we talk about what is going on with her and makes us not want to talk to that person anymore because it is one of those comments that for me ends a conversation. Sometime I will write a blog post about this to share with the world because I think that most people don't mean for this reaction when they say it but honestly to me when people say it, it hurts a lot.
-I always worry too that people will take all of this that we don't love our life or are grateful for everything we have. We LOVE our life. We LOVE our little girl. Jillian would NOT be the same person without all of this. She is a strong, determined little girl and a lot of that comes out of the circumstances in her life. She is sweet and kind and lights up the world. She brings smiles to doctors and nurses that have a very stressful job. She was put on this earth for a reason. She was put on this earth with all of her struggles for a reason. We LOVE her just the way she is and if I changed all of this health stuff she would not be the same person. That does not mean that I wish her any of the pain that she goes through. I always want people to hear the hope that we have in all of this (even though this is most likely a life long disorder that will not get better). We do have hope. We have hope for our future. We have hope for all of the things that God is teaching us in all of this. We have love and joy and peace. God has given us the opportunity to be the parents to an amazing little girl. We are the blessed ones in all of this because we get to know her.
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