This update is long overdue, but the past couple of weeks haven’t seen a lot of progress and there has been a lot of discussion about where we go from here. Addison is still in the PICU. She was admitted and intubated on Thursday the 25th and extubated on Sunday the 28th. She has been on bipap since then. She’s had lots of ups and downs. She was fighting a lot of secretions and needed frequent suctioning up until the past few days. She has also had a lot of trouble maintaining her oxygen saturations – she was up to 100% oxygen several times. Her tendency to obstruct her airway has been a huge hurdle. Her bipap settings were weaned down and then increased again a few different times. Looking back over the past week, she has made a lot of progress – it has just been very slow. She is doing trials off the bipap during the day now. She actually had two four hour windows off the bipap yesterday, and she was on room air for most of that time. This was huge because prior to yesterday, she was on a mask with 28-50% oxygen during her time off the bipap. She also frequently wasn’t able to complete even an hour off the bipap for several days. Today, our goal was two five hour windows off the bipap. This morning she made it four hours before her oxygen levels dropped and her breathing became too shallow and she had to go back on the bipap. Currently, our goal is to get her to a point where she only needs to use the bipap at night and can be off it during the day. If she can do well with that schedule, we can go home with a bipap and continue using it only at night and possibly naptime. We would follow up with pulmonary and hopefully be able to wean her off the bipap more after she’s home to (ideally) get her back to using only a small amount of oxygen while she sleeps. She is back on her home feeding schedule and doing absolutely fine with that. This stay has been a lot of one step forward, two steps back and a lot of really difficult days. Of course, balancing time spent at the hospital with time spent at home is always challenging and it becomes even more so after a couple weeks. She’s doing better for the moment, but we don’t know how much longer we will be here. She has been acting more like herself the past few days and has been more alert and smiling at everyone, which is very reassuring. She has so many friends here in the hospital that she is never lacking attention or someone to tell her how cute she is. As always, thanks for all the well wishes and prayers.
Sooo, I don’t know if y’all heard about this craziness, but the girls turned three
a couple of weeks ago a month ago. I’m way behind on the blog and even on facebook updates; it’s been pretty crazy around here since May, but that’s another post. THREE! How is it possible that these girls are three?! It feels like three years have flown by, yet at the same time it feels like the past three years have taken forever. It was really fun to celebrate their birthday this year, because Violet and Oriana really started to get what it was all about. They were so excited to have a party (parties are their new favorite thing). They are slightly obsessed with the color pink right now, so we had a pink party. Since things have been so crazy, we kept it pretty simple – pink balloons, streamers, plates, cups, utensils, pink icing on the cupcakes. The girls all had pink flower clippies for their hair and we asked their guests to wear pink if they wanted to. They had a great time with all of their favorite people. Plus, they got to eat pizza and cupcakes, so they were pretty thrilled. Mother Nature cooperated and even though we had thunderstorms and hail earlier in the day, it cleared up and we had a beautiful evening for a party. They got lots of wonderful gifts. They have amazing, caring, generous people in their lives and we are extremely grateful.
They got to eat donuts for breakfast on their actual birthday, and then we took them on a walk to the park to run off all the sugar. They also got to go out to eat for dinner, which is one of their favorite things to do and something that we don’t frequently get to do any more. Violet and Oriana got to have their favorite meal from Grinders (chicken fingers) and we experienced the generosity of strangers when the table behind us paid for most of our meal. It was a really nice surprise and we appreciated it very much. It’s so easy to think about all the negative in the world and it is so nice to be reminded of kindness and good things.
I think we managed to give our little ladybugs a pretty awesome birthday weekend. They still talk about it occasionally. It’s so much fun to see all these experiences through their eyes. Thanks to everyone who helped make their birthday great!
I have been thinking a lot about Addison and how far she has come this past week. The month of October always makes me think about our little peanut and all she has been through. Two years ago, she was extremely ill and was transferred to Akron Children’s from the NICU at Aultman. In some ways, it has been a very long two years. She has been through so much since she was born and I am so proud of her and all the progress she has made. She’s a little fighter and she just keeps powering through everything that life throws at her. As I sit at her bedside typing this during yet another hospital stay for respiratory problems, I am just amazed by this girl. This is day number three of her not feeling well (wheezing, coughing, labored breathing, etc). We came to the ER at 7 pm Thursday and she didn’t get settled and get to go to sleep until midnight. She missed a feeding; her meds were way overdue. Between 7:30 am and noon Friday, she had projectile vomited, been deep suctioned twice, assessed at least a dozen different times by doctors and nurses, given a breathing treatment and inhaler, and just generally irritated and not left alone, and yet she was still smiling at me. She has always been such a sweetheart.
Addison was transferred to Akron Children’s on October 6, 2014. That day (and the surrounding days) were some of the worst days of my life. I can honestly say, I have never been so terrified as I was during that time period. Addi was so sick and my heart just dropped to my feet the moment NEC was mentioned. Knowing your child’s life is in danger is the worst feeling; there are no words to describe how that makes you feel. I don’t think it even fully hit me how terrified I was and how very ill she was until after her surgery. I remember the surgeon coming to talk to us about the surgery and he walked us down to the NICU so that we could see her. They were still getting her settled so he left us in the hallway to go check on her and see if they were ready for us, and I remember I completely lost it at that point. I just started crying hysterically. I was so relieved that she made it through the surgery and he was able to find and correct the problem. In that moment, the switch flipped and all those emotions I had been holding back came rushing in. It was a long eight weeks after surgery until she could go back and have her ileostomy reversed. She struggled with feeds and dumping all her nutrition out through her ileostomy. The ileostomy constantly leaked; it was impossible to keep a good seal around the bag. She went through morphine withdrawal. We all made it through and she learned to take bottles very quickly. Of course, being so premature and so ill did not leave her unscarred. She’s made it through it all like a champ though. She has always been a happy, content baby. The only time she cried a lot was when she had undiagnosed seizures. She’s taken it all in stride: vomiting, surgeries, NG tubes, radiology tests, bloodwork, muscle spasms, physical therapy, occupational therapy, seizures, and hospital stays. This girl has to work so hard for simple little things like holding her head up and standing. Every little grin she wears makes my heart so happy. I am so proud of her and how far she has come in two years. Two years ago she was on the ventilator, in an isolette, trying to recover from her first surgery and having a rough time of it. While we are in the hospital yet again two years later, she is in a big girl crib and cooing and smiling at me and just generally being adorable and getting all the nurses to love on her. She can hold her head up so well lately. She can stand with her leg braces on in a stander and she can take baby steps in a gait trainer. She loves doing speech therapy and getting tiny little tastes of different things. She makes eye contact and loves watching her sisters. These may seem like such little things, but for her, they are huge steps. She just keeps going and trying and smiling. All our girls are miracle babies and I’m so incredibly proud of them. Addison has just had an unfairly difficult life thus far, and I hope it keeps getting better for her. I hope that in two more years, I will be able to look back and see an incredible amount of progress again. I’m incredibly grateful that she has been able to overcome so much. I’m thrilled that this was a short hospital stay and that I get to take her home today so that we can feel like a family again. Mommy loves you Peanut.
Yes, I have a special needs child, who is one of three. Yes, my life is hectic and stressful and my to-do lists never seem to end. I have very little “me time.” My needs almost always come last and I’m generally exhausted. But my life is also beautiful and blessed and I wouldn’t change it. But I digress from my point, which is this: I am not a hero, I am not amazing, I am not incredible. I am just a mom. I am just doing the same thing any other mom would do if she were in my shoes. You don’t know how I do it? You know what? Some days I don’t either. You just do what you have to do. When you have 3 little people depending on you, you don’t have much choice. I get through the day the best I can. Some days I do better than others. Some days I have very little patience, and some days I am calm as can be. Some days I laugh, some days I cry, some days I scream. But I am not superhuman. Most days, I’m just doing the best I can. Every mom wants what is best for their child(ren). I am no different. It is not always simple to meet the needs of a special needs child or even a “normal” child when you have more than one, but that’s what mom’s are for. Taking care of our kids is what we do best. And that’s really the point – I am just a mom, doing the best I can and hoping that it is enough. I worry that I neglect Addison because Violet and Oriana are more vocal and mobile. I worry that I haven’t had the time to do therapy exercises with her or put her braces on. I worry because there are days I don’t get to sit and hold her and she likes to cuddle. I worry that I neglect Violet and Oriana because simply feeding Addison and giving her medications is so time consuming. She needs positioned, she needs to stretch, she needs her braces put on, she needs to do tummy time, she needs a lot. The vast majority of the time it feels like nothing in our lives is simple. Doing anything with three little ones in complicated. Plus, we have to time things around Addi’s tube feeds or take all her feeding supplies with us. She sees a whole team of specialists every three months, plus regular pediatrician appointments and weekly physical and occupational therapy. Like I said, the to-do lists never seem to end. But seeing that little girl make even just a little progress is totally worth it. Plus, there’s nothing better than when she looks right at me and gives me one of her rare smiles. Seeing all our girls grow from tiny little preemies to mostly healthy, and definitely happy, almost 2 year olds has been amazing. So, the point is, my kids are awesome and inspirational; I am not. I’m just hanging on by a thread, hoping to make it through another day. Don’t take this the wrong way; I know people mean well when they say these things. These are just some of the things that run through your brain when you hear theses phrases said all the time. I’m just telling you how I feel about it all. And it’s not me you should be in awe of.
I have been contemplating the journey that we were thrown into thanks to having a child with special needs. It is not a journey that I ever thought I would take. It has been a journey of contradictions. It has been: frustrating, sad, challenging, joyful, rewarding, and exhausting. I will always wish Addison was perfectly healthy just for the sake of her life being easier, but this roller-coaster we are on has taught me a lot. I’m sure there are many things I have yet to learn and discover. Over the past 18 months, these are some of things having a child with special needs has taught me or I have experienced:
* To stand up and fight for what is best for my family/child. Healthcare providers are a great resource and very knowledgeable, but it comes down to this: you are the one that takes care of your child day in and day out. You are the one that lives your life. You know your child best and you know what will work for your routine. Don’t be afraid to say no to something that is not reasonable for your family/child.
* This point goes along with my last one: if a doctor or other provider is not helping you, find someone who will. If you feel like you are not getting the right answer or making any progress, get a second opinion. You shouldn’t have to fight so hard to get your child what he/she needs (but, unfortunately, you frequently will). Explore other options. There are a lot of excellent doctors out there, but there are also a lot of not so excellent doctors out there. I fought Addison’s GI doctor for months about her feeding issues and never made any progress. I started to question myself; maybe I was making mountains out of mole hills. But I asked her rehab doctor for his take on the whole situation, and he assured me that I was not crazy and gave us a referral to a different GI doctor. It took one appointment with the new GI doctor, and we were scheduled to get an NG tube, as the first step on the road to a g-tube. After fighting and fighting for so long and not making any progress that seemed far too easy. However, the reality is, it shouldn’t be that hard. So again, do not be afraid to fight for something you know your child needs. Never stop questioning and never assume that you are wrong and someone else is right.
*I have found strength I did not know I had. I have watched my child go through more in her short life than most people have to experience in a lifetime. In 18 months, she has already had 3 surgeries, spent her first 4 months of life in the hospital, been hospitalized five times since being discharged from the NICU, had multiple radiology and lab tests, and more doctor’s appointments than I care to count. While taking care of NG tubes is something I do frequently as a nurse, it was another thing entirely to have to put one in my own child every week for five months. I will do whatever it takes to make her life better and to get her what she needs. I will get through it and I might come out the other side a little broken, but I will survive. When you’re a mom, you don’t have the luxury of lengthy breakdowns; you have little people depending on you, so you have to pull yourself together and get through the day somehow.
*I have no idea how anyone could think that our little peanut is not absolutely perfect. Because she is. She is 18 months old and her development is that of a 3-6 month old, but in spite of (or maybe because of) her problems, she is perfect and beautiful to me. So she’s not everyone’s idea of the “perfect” baby. I don’t care, she is perfect to me.
*You will become best friends with Google. Every time you get a diagnosis or a new therapy is suggested, you will immediately turn to your trusty friend Google to look up anything and everything about it. You will educate yourself so that you can make a good decision for your child. You will quickly become an expert on your child’s condition and the available treatments. It is one of the few things you can do to make yourself feel like you are in control, so you will spend hours in front of your computer.
*Some days are good, some days are bad. You learn to roll with the punches. You rejoice in and celebrate the good days. You push through the bad days, and hope that the next day is a little better. You do the best you can and you try to remember that you are doing your best, and your best is enough.
*You never stop trying to solve problems or make your child’s life easier. Ok, we got rid of the NG tube, and got the g-tube, great! Now, let’s move on to trying to bottle feed again. There is always another step to take and something to try to improve your child’s quality of life. And as a parent, you are always looking for what is next and what you can do.
*You will frequently feel like you are failing. I feel like I am not doing enough to help Addison all the time. I feel like I should have done more exercises or more therapy with her or I forgot to put her hand splints on. I feel like I’m not paying enough attention to any of the girls. You’ll feel like you neglect your “normal” children because you have to spend so much time focusing on the one with special needs. On the other hand, sometimes I feel like I neglect Addison because Violet and Oriana are so demanding of my time and attention; they can walk and are starting to talk and Addi can’t do those things to demand my attention.
*If you’re like me, you will spend a shocking amount of time trying to find someone to watch your other children, so you don’t have to drag them all to doctor’s appointments. Sometimes, you will have no choice but to take everyone along. You will quickly learn to stop apologizing to everyone for this; it’s just a fact of life. Babysitters don’t just appear when you have a baby.
*Getting away is a challenge. It’s one thing to leave your kids with grandma, it’s a whole different story when one of those kids is tube fed, takes a bunch of medications, and has seizures. It’s not so simple to get away. It takes a lot for special needs mamas to feel comfortable leaving their child with someone else. Addison is not a typical 18 month old at all, so the instructions and education it takes to teach someone else how to fully care for her are lengthy and overwhelming. And if you do finally reach a point where you feel you can leave your special one with someone else, you pretty much write an instructional manual on how to take care of him/her with a trouble shooting section included.
*Some days, you will feel sorry for yourself and/or your child. Having a special needs child is hard, it’s that simple. You’re allowed to feel stressed and overwhelmed and like you can’t do it anymore. Simply put, you are human, and we all feel this way at some point. The important thing is that you don’t dwell. Mourn for your social life, your baby’s challenges, the loss of your idealistic normal, and then move on. Get back up and keep going. Don’t beat yourself up for feeling down. Feel what you need to feel, and do not feel guilty about it.
I’m sure most of you know, or have seen, that Addison finally got to have surgery to get her g-tube. We could not be more excited to be rid of the NG tube! The NG tube was supposed to be a two month process and it turned into a long, drawn out five months. We finally made it though. Addison was able to see the surgeon that did her previous two surgeries, which made us feel much more comfortable with the surgery. We absolutely love (and trust) Dr. McCollum; he saved her life when she was in the NICU and that’s not something we will ever forget. Addison’s surgery was scheduled for 7:30 this morning (which means Mommy and Daddy had to get up at 4:30, bleh). Surgery went well; it actually ended up being the best case scenario – he was able to do it laparoscopically (smaller incision!), and even though she had a lot of adhesions, they were not in the way. Surgery only took about 45 minutes. We will be staying overnight to make sure her g-tube is functioning properly and to learn what we need to know to take care of it. She’s doing well. So far, she has been in a lot of pain. She mostly slept until about half an hour ago and then she woke up crying and had some spasms and tremors. She’s not due for more pain medicine for a little bit yet, but Daddy’s holding her and she’s no longer hysterical. Hopefully it will help when they get her muscle relaxer ordered and given, since she hasn’t had a dose yet today. I hate seeing her so uncomfortable, but hopefully as the day goes on, she will feel better. It is nice to see her face without the NG tube and all the tape! Thank you for all your thoughts, prayers, and wishes for things to go well. I’ll let you know how things are going again tomorrow.
I haven’t posted for a while. Things have been a little more crazy than normal and I just haven’t had the time or the motivation. I do have a few posts that are in the works, and I’ll get them finished up soon, but I wanted to do an update first, since it has been a while. I think most of you know that Addison ended up back in the hospital due to her feeding issues. Even with running her food overnight and feeding her smaller amounts during the day, she was still throwing up at least once per day. When she threw up all over herself and my car (and it was forceful enough that her NG tube came out) after PT/OT on Thursday the 10th, we went straight to the ER at Akron Children’s. I am happy to report that we had a positive experience in the ER this time (definitely not the case the last time we took her there). They contacted the on-call GI doctor (Dr. Garcia) and he was willing to admit her to try to figure out what to do. He was concerned because the NG tube is basically a test we have to complete before we get the g-tube; and obviously, the “test” has not been going well. For whatever reason, having larger amounts in her stomach does not sit well with Addison. It might not be digesting fast enough or it might be aggravating her reflux. The doctor said there were a couple of medications that we could try to help with gastric motility. He was very honest though, and said the one doesn’t really work and the second one is not guaranteed to work either and has the potential for some serious side effects. (For my nurse friends – because I know I would be curious – azithromycin and reglan, in that order). There was no way we were going to give her any medication with the risk of such serious side effects, especially when there was a good chance it would not even be effective. So Dr. Garcia suggested that we try putting the tube in her small intestine, instead of her stomach (called an NJ tube). An NJ tube has to be placed under x-ray. Addison got an NJ put in before we were admitted. She had been crying most of the day and was showing no signs of stopping; I think she was definitely hungry at that point as she had thrown up what food she did eat hours before. Between her screaming and crying, she managed to push the NJ tube all the way out by the time the nurse finished admitting her. We decided to put an NG in for the night (since they would not be able to reinsert an NJ until the next day) and give her continuous feeding at 20 ml/hr (less than one ounce each hour). They had the surgeon see her while she was there. To make a long story short: she tolerated the continuous feedings well. There was talk of doing a nissen surgery with the g- (or j-) tube (which would stop her vomiting, more to come on that later). The surgeon decided that he wanted a test to evaluate her reflux before deciding what to do. So, we went home on Friday (only spent one night in the hospital), because the test needed to be done as an outpatient so the results would be more accurate. I think it was Tuesday that we went and got the pH probe placed, so that the severity of her reflux could be monitored and we could determine if her choking/vomiting happens when the reflux acts up. I do not have the results yet, but I would bet good money that the reflux correlates with her vomiting.
We started seeing the dietitian at the GI office to monitor Addison’s weight gain and make sure we are meeting her calorie and fluid needs. She wanted to try Addison on a higher calorie formula, so that the volume she needed to take in every 24 hours would be lower. It is 45 calories per ounce, instead of 27; so she only needs 13 ounces instead of 17 each day. She wanted to do a continuous feed for 8 hours at night, and two bolus feedings during the day. Addison threw up every morning at the end of the continuous feed. So the dietitian thought we should try less food at night and more during the day, but then Addison started throwing up during the day, because it was too much volume at once. So Mommy finally said enough, and put her on a continuous feed at 20 ml/hr, which is what she tolerated so well before. Since her formula is higher calorie now, it doesn’t have to run for 24 hours; I can get her total amount in in about 17 hours. The challenge is making sure she is getting enough water to meet her fluid needs as well. I figured if I could get her calorie needs met first, that was most important, and I will figure out how to work the water in. We have been on this road for a while now, and I know what tends to work and what doesn’t. If it keeps her from throwing up, I will deal with a continuous feed. Hopefully, it will just be temporary until the surgeon decides what he would like to do. If she’s not screaming and throwing up all the time, it makes my life easier, even if I have to have her hooked up to the pump most of the day. Seventeen hours a day really isn’t that bad though. It runs for 10 hours overnight (10 pm to 8 am) so that only leaves 7 hours during the day it needs to run. And who cares, as long as peanut is happy!
Addison’s occupational therapist suggested trying a therapeutic brushing technique to help calm her down, especially when she seems to be overwhelmed by stimuli (like being in her car seat and getting a bath). You literally use a brush to apply firm pressure to the lower arms, legs and the back. Then you apply gentle pressure to the joints (which gets the sense of proprioception involved, for my medical field friends). It is supposed to be very calming to the nervous system. According to the website OT-innovations.com, it helps the “mind-brain-body self-organize”. Our OT said she has had a lot of success with it. I have been trying to do it every day and it does seem to help. The effects are supposed to last for 2-3 hours. We are trying to do this before putting Addie in the car seat or giving her a bath to see if it helps. Fingers crossed that it will! (And bless pediatric PT’s and OT’s because our wonderful therapists have given me so many helpful ideas!) If you are curious, this is called the Wilbarger Deep Pressure and Proprioception Technique. I found some basic info at http://www.ot-innovations.com/clinical-practice/sensory-modulation/therapeutic-brushing-techniques/ .
That’s enough about Addie, moving on to V and Ori. Violet can take steps if I hold onto her hands and walk behind her or sit in front of her and let her walk towards me. She’s such a big girl! She is seriously addicted to puffs; if I would let her, I think she would happily eat only puffs. (But I’m a mean mommy and won’t let her; she doesn’t hesitate to let me know just how unhappy this makes her). She is now pulling herself up to stand in her crib. She has to have a blanket to cuddle (and her thumb to suck) before she can go to sleep. (She gets the blanket thing from me. I had a blanket that I drug around everywhere for a long time – pretty much until it disintegrated).
Oriana is getting really good at crawling on her hands and knees, but when she really wants to move fast, she still goes with the army crawl. She pulls herself up on anything and everything. She has discovered that splashing in the bathtub is loads of fun. She prefers to have her Mommy and Daddy slaves feed her instead of feeding herself. She has been a bit grumpy thanks to her top middle teeth taking their sweet time coming through.
Today, we took the girls to the annual Aultman Remembrance Ceremony for those that have experienced an infant or pregnancy loss. Luckily, it stopped raining just in time for the ceremony. The girls were surprisingly good considering it was their normal nap time. We wrote Callie a note and sent it with the balloon release. It was very emotional and seeing all the other parents there who had lost a child made my heart hurt even more. It was wonderful to remember and honor Calliope, and it was healthy to continue the grieving process. We plan to make our own traditions to share with the girls and remember Calliope by. We will never forget our little butterfly and we want her to be a part of her sisters’ lives as well.
I have not even taken time yet to see what the month of October looks like for us. We are planning on celebrating the girls’ first birthday in October. I am not sure what doctor’s appointments we have and if it looks crazy or semi-calm; not that it matters, because something always comes up when it is relatively calm. Hopefully I will get a few more posts up over the next couple of weeks. Until then…baby giggles and slobber and attitude (at least in our house).