The truth

                                                                        The truth

            Allow me to preface this blog entry, this is in no way a log of complaints nor a plea for sympathy. Today, it is merely an insight into what life is like with Lily, as accurate of an insight as possible without actually inviting perfect strangers into our home.

            Today, Lily is celebrating 11 months of life! That is quite the achievement considering we weren’t sure she was ever going to make it out of the hospital 11 months ago. Today Lily is not quite sitting on her own and she eats small amounts of yogurt and applesauce being spoon fed. Today Lily has two teeth, one on the top and one on the bottom. She has at least two more that are about to poke through. Amazingly, keeping in stride with the way she has been, she is taking it rather well. A bit more cranky than usual but no more than we have already dealt with.

Over the course of the last 11 months, beginning at about three weeks of life Lily had in home weekly nurse visits for several months. She has seen her regular doctor at least 10 times. Lily has seen “specialty” doctors about 15 times, ranging from; genetics, cardiology, ENT, a swallow specialist, GI, orthopedics and oxygen specialists. She has had by my estimation, 16 occupational therapy appointments, 10 physical therapy appointments, a handful of visits with the birth-3 program coordinators and staff. Lily has also seen chiropractors a handful of times as well.

Also over the course of the last 11 months, we have tried 13 different formulas, including goats milk. Lily suffers from extreme acid reflux which landed her in the hospital in September of 2014. She choked so hard that it broke most of the blood vessels in her adorable little face. My husband and I have tried various “cures” for the acid reflux, including, Omeprazole and ranitidine. Neither of which worked. We have tried coconut oil, chamomile tea, ginger root, aloe vera and gripe water. Finally we got sick and tired of Lily being treated like a case rather than a person and went alternative/natropathic. As it turns out, Lily’s reflux is a direct result of not producing enough stomach acid and needing to be on a pancreatic enzyme. It is due to her blood type. Honestly, looking back, we should have just gone this route in the first place… But given the special case that Lily is, I think we allowed her special needs and many unknown factors to determine our decision more than we should have. Since Lily has been on the enzyme, her reflux has been greatly reduced. Not gone but not as uncomfortable and I believe much more tolerable for her.

 A few days after birth Lily was put on oxygen, she finally decided it was time to retire the tubes in August of 2014. She had ear tube surgery earlier in the month of August as well. Lily was on oxygen for almost the first 6 months of her life. Everywhere she went she had tubes with her. At night she was hooked up to a pulse ox meter. She regularly had a rash on her foot from where the tape had been. The first two months of her life she was hooked up to the pulse ox 24 hours a day. The rash was much worse then, even with changing the location on her foot multiple times a day. She also had tape on her face, either on her nose to hold the tube in place or on her temples. We had to change up where we taped her on her face also because of skin irritation. Lily didn’t seem bothered by her tubes until the last month and a half or so. Her oxygen saturation levels were beginning to stay pretty consistent during the day when off oxygen. She was beginning to test her new limits as to what her little body could do. We eventually were able to keep her off the oxygen all day long with no problems what so ever. At night she would go back on and her saturation level would stay in the normal range. After about a month of only oxygen at night, Lily began pulling the oxygen out while sleeping. The alarms would never go off on her meter because she stayed within the normal range. It was as though she was telling us that it was time to come off.

We continued to keep the pulse ox on her at night with no oxygen just to be assured that this was really going to work. It sure has. It has been 5 months without oxygen and Lily has been doing great without it. A HUGE praise to God, the oxygen thing, while in the midst of it, seemed to be something that we were never going to make it out of. I can’t even begin to describe the odd looks we got from people when we would actually go places. Woman would approach the infant seat, not seeing the tank or the tubes with delight, then once seeing our little bundle their face would turn sour and ask what was wrong. We both became so well rehearsed in our response, we had been asked too many times to count. “Well, when she was born her lungs were under-developed, so she needs a little extra oxygen until her body catches up.” The response came automatically. It was usually followed by a nod, pushing out a smile and the person quietly walking away. At first it hurt my feelings and made me not want to go anywhere with her. I didn’t want anyone to just sit there and stare or ask questions. I didn’t want to have to explain away the huge truth of our life. God healed Lily in His perfect timing. It may have taken longer than we had hoped but no less, He healed her.

As time has ticked along there have been some strong character traits that have come forth in Lily’s little personality. We weren’t certain if they were a trisomy thing (see blog about trisomy 9) or if it was something else. So, one night I googled: why is my baby so crabby all the time. I found an article by a Dr. Sears. If you’re curious, google it for yourself. 12 features of a high needs baby. I read through the article, then skimmed through it again because I was in utter disbelief. This was our little baby. This was Lily to a T. While the article didn’t necessarily give solutions to caring for a high needs baby, it lead me to other blogs and resources and it also filled my husband and I will some relief that there was an explanation to what it was we were dealing with. I personally can’t offer any solutions either. In this 5-step to a solution sort of world that we live in, there is no easy fix of solution to coping with a high needs baby. And as difficult and as painful as this has been, in combination with all of Lily’s other special needs, we still have hope. We have faith that every day that we have Lily, God will provide just as He has for the last 11 months. God has provided resources. God has provided money. God has provided relief. Moreover, God has provided hope. There are days when we feel like we have no hope. I won’t lie. There are days where we are utterly exhausted and worn down to the nub because her reflux has been so bad and she is refusing to sleep again and wants to eat around the clock. Yes, this does happen.

It’s the middle of the night again. She’s been screaming with no hope of consolation (we’ve tried everything at this point) It’s 3 am and I’ve managed to get 15 minutes of sleep. This may be all I get until she finally decides to throw in the towel at 10 am. Yes there have been nights like this. This is the truth. These are the things most people don’t know anything about. Her reflux is out of control. She hasn’t pooped in 3 days. She getting a tooth. She was around someone who had a cold. We can’t lay her down. She doesn’t want to drink her bottle. She doesn’t want to be held. The Dave Matthews dvd isn’t even coming to the rescue this time. Nothing is working. She’s in tears. I’m in tears. What is left for me to do? So I utter a prayer. Many prayers actually. “Lord, please help me, I can’t do this anymore tonight. This child has to go to sleep. I have to go to sleep. There are so many things I need strength for tomorrow. Another unpredictable day is ahead. That is the only thing I am certain of, tomorrow is completely unpredictable. Please Lord, help us.” Lily’s cries turn to whimpers on her belly, on her tummy time blanket. The tears that have run down my face begin to dry and my shoulders drop a few more inches, the storm has passed. I pick her up as gently as possible and tuck her into bed.

This is our life. This is what every night used to look like. Sometimes the rocking and bouncing and music and crying and drinking milk would go on for hours. As I said before, seemingly with no end in sight. What else is a parent supposed to do? Pray. God hears me. He hears us. He hears Lily’s cries and knows her ailments better than we can and do. So we pray.

It’s been no coincidence that we have been led to various places and to various people for help and guidance. The times we followed the status quo, it seemed to return to result of more questions.  It was once we began to think outside of the box and follow our “gut” or God’s leading as I would prefer to call it, I think we have had more answers. My understanding thus far as to why God has given us such a special gift is because we refuse to just label her as something. Rather than treating her like someone. Someone very dear and special to us. We have set forth to go the extra mile for Lily. To continue to search. To keep looking for answers and solutions. And I’m hoping that in the meantime I can share it with whomever decides to read these blog entries.

I labeled this the truth because on the outside, if you see us out and about we may appear to be a normal family of 4. (whatever normal is anyway, haha…) Lily’s older sister tagging along side of the stroller. My husband or myself pushing the stroller and the other one of us not far from it. But there is so much that goes on within these walls, as there is in any other household, I would presume. But our life I can speak of, it’s the only life I know now.

There is little time for my husband and I together alone. There is little time or energy for leisure activities. Our days are filled with a lot of Lily face time, no I’m not talking about the app for your I phone, although it is similar. Lily isn’t interested in toys or books and any other “normal” baby things. She prefers to watch what you do. And she just wants us, all to herself, all the time. She studies. She watches and she sighs at times, furrows her brow and when she is bored with that, she will surely let you know. She will get a burst of energy out of nowhere and laugh a hearty laugh or make a howling sound. I often refer to her as the quiet spider because she often is content just watching the world around her. She is also commonly known around here as the cutest waker-upper ever. She really is. She will lay in bed making nearly inaudible sounds, just looking at her little bears that are printed on her bumper. I am grateful to say that most of our days get off to a good start, with smiles and quiet studying and laughter but that unfortunately changes quickly.

 My husband and I have coined a few new terms and phrases that only we would truly understand. Such as when describing our day- it was brain-melting. Or one-baby-circus. We can text these things to each other or say them in passing and know exactly what we’re talking about. If anything these new set of circumstances have helped us up our game in the communication department.  

 With the winter spewing it’s wrath all over Wisconsin, we certainly don’t go out much. We don’t have a regular baby sitter. We don’t have regular visitors. In fact we talk to less people now (not really by our choosing) than we did before we had Lily. The reason for that I think, is because I don’t think people know what to say. Because they know that with the events that have unfolded over the course of the last 11 months, we got rocked. There is no other way to describe that happened to our family. We did, we got rocked. We never saw this coming, nor would we have asked for it. Having said that though, having Lily in our life, we wouldn’t change a thing. If we did, we wouldn’t have her. And we wouldn’t give her back for anything.

She is beautiful. She is captivating. She is the strongest little person I know. She is a miracle in every sense of the word. There aren’t enough descriptive words in the English language to describe how truly amazing she really is.

Today Lily is 11 months old. God willing we are looking forward to more of this story unfolding. We haven’t made it this far without God’s help, I can’t say that enough. Thank you Lord for every day you have given us with Lily. Thank you for entrusting her to us.

**disclaimer**

These are my opinions. My account of our life and our experiences. Everything I have written here is not meant to be advice or a directive of any sort. Regard the information here as you wish. I am merely sharing our life experiences in the hope that there is someone else out there who needed to read this, just at the right moment, to know that they’re not alone. Much like we felt like we were alone at points too, until we found someone else who was going through what we are going through. I wish you Godspeed in your personal endeavors to finding a solution that WORKS for you, whatever it may be. Everyone is different and different things work for different people. God bless.

            

Partial Trisomy 9 & 12

       It was exciting being pregnant. It seems like it takes an eternity to meet your new baby but it is well worth the wait. Even the labor is worth it, in hind sight of course. While in the midst of it you can think of a hundred things you would rather be doing, that are probably a lot more fun. Bringing Lily into the world was especially painful. Pain I can't even begin to describe. Thinking back on it now I am shocked I even made it through that...
 
        She didn't cry when she was born. The whole room fell silent except for a few suspicious whispers. After what felt like forever a very raspy cry rang throughout the room. What a relief, we couldn't help but cry too. She was nearly as blue as a summer sky. They wrapped her up in blankets and laid her on my chest. Oh what a beautiful little blessing she was. Our little angel, we finally got to meet her...
   
       The doctor and nurses were clued in by a few of Lily's abnormalities right away. Her little pinkies and pointer fingers didn't look right, they were turned in. Both of her feet were different. Also they later told me her hip was hyper-extended upon birth too. They gave her oxygen upon coming out and has to resuscitate her to some degree too. All of this I found out later, rather than while it was going on. Her blood sugar was low too. They took her to the NICU unit. Our first meeting was brief which made me feel very worried and sad.
      I didn't get around to going and visiting her until nearly 9 in the morning. She had been born at 4:30 am. I held her close and prayed over her, no one had answers as to why she needed to be under extra special care. My husband had been able to go and be with her for a while and so did my mom. Now I finally got to hold the little baby that I had been carrying in my belly for 9 months. And even though there was something "wrong" with her, she was all together perfect to me. She was beautiful!
   
         The doctors ran various tests on her, they sent out for genetics testing; did x-rays, ultrasounds, blood work. I had prayed that her "abnormalities" her because of how she was positioned in my belly. As the test results continued to come back normal, we were grateful but still miffed as to why the great concern. In the meantime, Lily continued to need sugar water in an IV. Then she spiked a temperature out of no where. So they put her on antibiotics, they also tested her for meningitis and ran more blood work. The thought of them tapping into her spine with a needle made me shutter. She was only a few days old when I was able to go home.
   
        We were all too eager to go home. It was difficult for us to be in the hospital where our privacy was completely compromised. We had no down time to try and sort through how we were feeling. Lily's future felt so up in the air and so did ours. We packed up our things, knowing that we weren't going to be able to take our baby home. It didn't hit me until I was sitting in my wheel chair waiting for my husband to pull the car around. I lost it. I had a diaper bag. Greeting cards that said congratulations, a couple of balloons, the infant seat was in the car. But we had no baby. I had seen other mothers in the elevator leave with their new baby and even congratulated them. I meant it too... Here it was our time to go home and we had no baby. Thankfully I had a wonderful nurse that latched onto me and hugged me until my husband came around with the car. I was a sobbing mess. How could I not see this coming? -That I would handle this so badly. That was one of the emptiest feelings I can ever recall having in my life.
   
        We needed rest. We rested when we could. We spent a lot of time up at the hospital. I couldn't imagine not spending time with Lily. We fed her bottles. We bathed her. We changed diapers. We listened to music and read to her. By her 5th day in the hospital she wasn't able to keep enough oxygen in her blood, so it was decided that she needed some oxygen. The put a canula on her. Yet another blow to the hope that we had that she was going to come home with us soon. They were able to get her off the sugar water, so her IV was removed but now we had a new cord to contend with, the oxygen line. She also had a bout with jaundice. Up until this point we had tried to keep as light hearted as possible. While she was on the billi blanket we had said that she looked like a glow worm. She was terribly cute...
     
         Its now sunday, 6 days in the hospital. We got a phone call wondering what time we were going to be in to see Lily. When we got to the hospital, the resident doctor had wanted to talk with us before he left. So, my husband and I, the doctor, and two nurses went into the family room. Doc was holding a few pieces of paper in his hand. I think my husband and I knew this was it. We were going to get answers today. Lily's genetic testing had come back. The doctor explained everything as thoroughly as possible, at least what he knew about it. Lily was diagnosed with Trisomy 9 partial, a very rare chromosome abnormality. When we got the news it felt like more of a death sentence than anything else. There was no inflection of hope in most of the words that followed. I felt myself go into shock. I felt like i was in the midst of a nightmare, I wanted to wake up so badly but this was it, this was our new reality. The only thing that came to mind at the moment, was what are we supposed to do, as her parents. So I asked the doctor. his reply made a world of a difference to both of us, "just love her" was all he said. That was all he needed to say.

       They left us to sort through our feelings for a few minutes. My husband, being the loving man that he is, began to research immediately. He wanted to know what we had on our hands. The internet had information but given the exact mixture or my genes and my husbands genes there is no way to tell how Lily will do. Even now, we just don't know. That Sunday night I went back to the hospital alone to be with Lily. I needed to. My husband needed sometime alone to work through what he was feeling too.
   
         I got to the hospital and washed my hands, I could see she was sleeping. I just wanted to hold her. The nurse and I moved the recliner over to her area so I could recline with her zipped into my hoodie as I had already done so many times before. I tucked her in, laid my head back and prayed. I prayed silently and I prayed out loud. I told God I knew that she was His before she was mine and that I'd like for her to stay with us here on earth if it was His will. But also that if it was't His will for her to stay that I knew He would get us through it. I could feel the tears streaming down my face again, silently. Even though everything about her birth was un usual and difficult, I still had a peace when I was with her. There was something about holding her near to my heart that seemed to make the noise in the world just disappear. The diagnosis disappeared. The sadness; the fear, the anguish I was feeling inside. I felt like my heart was ripped out that day but when I was with Lily, holding her, it went away, at least for a little while. Even though I had been crying, I still wanted the nurse to take a picture of us together. I wanted any moment I had with her caught on camera because we just didn't know. We didn't know if she was going to pull through this. The outlook looked so grim and no one was giving us any reason to believe otherwise. Except for Lily herself.

       I felt better about everything after that night. I felt like I had to lay her at the foot of the cross once more to even have the hope of being able to keep her. Many days since that wonderful doctor said "just love her," that has been the words that my heart has uttered too. Lily spent a total of 10 days in the NICU. She had some fantastic nurses that looked after her and cared for her. I am thoroughly convinced they are God's ordained bunch to do what they do. There were a couple that especially touched our heart. Bringing Lily home was no small feat. I had to re-learn CPR. We stayed over night in the hospital again with her to see how we handled her being on oxygen and a pulse ox monitor. It didn't go that well. I slept for maybe a total of 20 minutes all night.My husband didn't sleep much more than I did either.  Nervous I guess.

      I was terrified at the idea of bringing her home on oxygen but there was no other reason that she need to be in the hospital at this point. We had a long list of follow up appointments to schedule. We had a list of instructions and phone numbers. We really had everything that we needed to care for her at home. Lily had been losing weight and not gaining it back in the hospital, even being on a higher calorie formula. We were also faced with the threat of failure to thrive. My husband and I were convinced we could turn that around upon bringing her home.

        It had been painful looking upon her in the hospital hooked up to all of these machines and oxygen and and IV. We felt helpless. We were frustrated and angry even. I just couldn't wrap my head around why a new little person could be so broken. When you purchase something at the store, it's new. It's in the best shape it's going to be in- ever. I can't tell you why this happened to us or why it happens to anyone. It was something that was completely out of our hands. It was something that happened the moment Lily's cells began to divide. There was nothing we could do that could have impacted the outcome. Now, there is so much that we can do to make a difference in the outcome. Not one of us knows how long we're going to be here but we can surely make the best of what time we have. I could choose to live my life angry that this ever happened in the first place. That anger would spill over into my family and the amazing privilege I have in taking care of them. Was this what I would have planned for my life? No... I don't think anyone would. Am I grateful now? Some days are easier than others. I am immensely grateful for Lily, I wouldn't trade her for a different child. She is an absolute miracle and wonder to us. There are a few things I do know.  My husband and I were chosen to care for Lily. I will take that as a high honor to be able to care for such an amazing and special little girl like her. The other thing I know is that we have today... Today we are together, today she is alive and thriving. She has already over come so many obstacles. She is already a medical mystery and I pray she continues to blow doctor's away with her progress.

       Jesus said that we will have struggles and trouble in this life. He wasn't kidding. I do know that if it weren't for Him and the strength we find in Him we wouldn't make it through most days. He also said not to worry about tomorrow because tomorrow already has enough worry of its own. So, we must make a conscious effort to stay in today.