Christmas in July

   That title is a definite joke in Orlando where we just had a heat index warning over the weekend! But I'm still using that title because I am posting pictures from last December that I had not posted before. We had so many fun activities going on that month that I guess I forgot to post some of our special pictures. I loved how cold it was for most of the month. Not really cold compared to spending Christmas in Michigan the year before, but cold for Florida. It was in the 50's and 60's some days. (Yes, I know some of you are laughing- especially Mia who has lived in Colorado for almost three years, where they have snow 75% of the time!) But I like the cool weather here when it's low enough to enjoy wearing a jacket and scarf. That's nice weather.
   Anyway, so on December 11th last year, exactly one year from us flying up to Michigan, we took Emma to Disney Springs (or Downtown Disney as I still call it) so we could check out the Christmas Tree trail during the day. I tried to do a DIY Bibbity Bobbity Boutique baby bun before we left and put a pinch of glitter in her hair, as well as in my own!

   I was never a big fan of Snow White and the Seven Dwarfs, but now having our own sweet little baby with dwarfism, these characters seem a bit more special. I thought their wooden Christmas tree pyramid was cute, but not cute enough to buy for $250! Just kidding, it probably didn't cost that much.
   One thing Michael said he did not like while we were there, was how crowded it was in the stores and how everyone is in their own world. Michael would politely say, "Excuse me" while trying to push Emma's stroller around inside and the people would either not hear him, ignore him, or barely move, not paying attention to all the medical equipment attached to the baby and the stroller. I would like to go back again this year, in the evening when it's dark and the lights are on- and hopefully the fans that blow snow (soap) are turned on this time. We'll just have to avoid the stores!
   I was sad that they didn't have a Moana tree since that movie seemed newer and pretty popular. Frozen seemed to be the most recent themed tree. I saw a huge tree Christmas in another section of the area and an employee offered to take a couple pictures for us. If we had not taken our own Christmas photos at home, I probably would have used one of these, although I'm glad Emma was smiling/ laughing in our 2018 Christmas cards.

    We had lunch at Blaze before going home. It was like Subway, but for pizza!!
   Below: Snuggling with Grinch and enjoying a physical therapy session with Grace. Lara has been Emma's physical therapist now since April because Grace moved back up North at the end of March. Oh, and last week Michael met with the therapy coordinator at our house for Emma's yearly evaluation and since Emma is pretty far behind on the developmental chart, she said we could start having someone come to the house for Emma to get Occupational therapy once a week too! She told me to expect a call, but I'm still waiting.

     My best friend, Mia, flew to Florida for two weeks around Christmas last year and I wanted to spend more time in Gainesville with her instead of just driving up one morning and coming back that night. However, Michael and I always need to do trach care together - I hold the trach in while it's unattached so he can clean well around her neck and stoma. We usually do this around 9pm after her treatments, but in order to get to Gainesville early, we did her bath and trach care in the afternoon. It doesn't really matter what time it is done, as long as it is done once a day. The bath has to be done before trach care or on another day, if I have to leave early. It can't be done after trach care because then her neck and ties (the thin, blue fabric that holds the trach in her neck) would get wet, causing her skin to get raw and break down overnight. In the 15 months that Emma has been home, we have only skipped trach care one night because Michael didn't get home until after midnight (but did it the next morning) and on two occasions he did trach care on his own, but said it was very difficult.

   Before Christmas Day a co-worker let me borrow a little Santa suit that she had from when her sons were little- they are both in college now! I guess I had mentioned wanting to do a photo shoot like that, but didn't have an outfit for Emma and didn't want to buy one. I had to pin the sleeves up, but other than that, it fit her really well! I took these pictures on Christmas Eve. The cookies were ones I had made with Mia at her parents' house a few days prior.  At this point Emma could not sit up on her own, but could balance herself as long as she was leaning against something, hence the present! ;)

   Here she fell back (gently) when I tried to get her to balance on her own for a few seconds, but then she stayed there, looking at the Christmas lights. Looking at lights are her favorite. Maybe one day she could be a model since Tyra Banks is always telling girls to "find the light". Today she was facing the kitchen and when I opened the blinds behind her, she immediately flipped from one side to the other, towards the light. When Michael got home on Christmas Eve we took pictures of each other with Emma -- I mean, Baby Santa! I'm not sure if the suit will fit her again this year, but it's worth a try! ;)

   I get extra pumped for winter now since Emma does much better in cooler weather than in the heat. Too bad is Florida is the opposite of Colorado and is at least 85 degrees 75% of the time. However, I am determined to take her to the beach one day, even if it's in November, and I'm the one wearing the ventilator backpack with a hoodie over it so it doesn't get sand blown up in it and Emma has a baby scarf on over her bathing suit to cover the trach stoma (the opening in the front of her neck). I even have a hand-me-down long sleeve swim shirt for her! But who knows. Maybe she'll be able to be off the ventilator for part of the day by November and taking her to the ocean for a little bit will be easy peasy. I'll definitely blog about that!!
   I think one reason why I am so adamant about taking her lots of places is ~ 1) it's fun! and 2) since she is not able to get social development with other kids until we know that her fistula is healed -and Michael is really adamant on not scheduling another bronchoscopy until later this year, which would roll into next March because of the whole RSV situation* and cold season- I want to give her lots of travel experiences. I want to let her see and touch and hear new things. I want her to feel sand in her hands and cold salt water on her toes and watch all the seagulls flying nearby as we listen to the waves crash onto the shore. If we can't always increase her development socially, we need to at least increase it environmentally!
   *When I say "the whole RSV situation", it is referring to the shot that she has to get five times between October and March. RSV stands for Respiratory Syncytial Virus and it is a Synagis shot (Google is also calling it Palivizumab) that she gets to prevent her and other young kids, or babies who have a higher risk of serious illness, from getting RSV. Especially kids with trachs and ventilators are suggested to not be around other kids during winter months during cold and flu season due to the higher possibility of passing along germs more easily. Some families take it as far as not even having any relative contact during Thanksgiving and Christmas! I'm glad we don't have to be that strict about it. But my point of mentioning it was because if it's cold and flu season, I wouldn't want to take Emma to the hospital in the winter, where there are sick germs lingering, in order to do the bronch. If she can't be around kids at that time anyway, we might as well wait until March 2020 to get it checked.
   Anyway, another reason why I am in Christmas mode already is because I am very excited to take Emma up to Birmingham mid December and I'm planning all of this stuff for us to do including going to the Zoo (and I did check that it will be open) and there is a Christmas parade the day after we get there. She will get to meet a bunch of adult relatives on Michael's side of the family who have only been able to watch her grow through social media. I also have not been to Birmingham in four years, since we were there before Christmas in 2015! So I am looking forward to going as well and seeing everyone again, plus it's never bad getting paid to have a fun week off from work. ;)

Big Girl Cuddles

   I might end up taking a blogging hiatus or only writing one post per month for a while (starting in August) as I work on editing a book about Emma and our time in the NICU, then hopefully get it published on Amazon! So I need to put that as a priority for a while over blogging. This might also maybe help me take less pictures. But right now I still have five more recent posts that I want to write and have on this website. I love going back and reading everything, but sometimes finding the time and motivation to write them all is what slows me down, especially since I like editing the pictures first. And it's so much easier to take naps and watch Netflix on my days off when we don't have doctor appointments! Tomorrow we're going to Pulmonology and Emma will practice "sprinting", which means breathing on her own while the ventilator is paused.
   While Emma was in the hospital and we were holding her as often as we could, I wrote on Facebook that, "When Emma comes home, the only fight Michael and I will ever have is whose turn it is to hold her." I wish that were true, and we did hold her a lot.. that first week. Now she spends most of her time laying down, either on her mat in the living room or in her crib, and spends maybe an hour or two per day standing in her play seat by the window with the attached toys around her.
   About two weeks ago, on July 10th, I held her again. And it was the best!! I held her in my lap with her facing me while watching a show. She was really playful and rocked herself back and forth, laughing, and leaning side to side, laughing more. Eventually she put her head on my chest and fell asleep. She slept soundly for 45 minutes before I had to put her down and she woke up again.

   I thought it was interesting when a Facebook memory popped up from July 2017, and it showed a picture of baby Emma, almost one month old, laying on my chest. The caption said, "NICU life has a lot of ups and downs. Today was an up day." I agree with it for this year too!

   Since then I have been holding her more lately and Michael says he has been too. Last night she didn't care for it, but that was mainly because she was coughing a lot and required her lung treatments about 40 minutes earlier than most nights. In the photo below you can see her little hand on my neck. Even though she was sleeping, her hand would scratch me every few minutes.

   Some other photos of her recently, plus a couple of her sleeping because she looks so beautiful and comfortable at night too.

      She looks so big and mature in this ^^ photo! She is really good about sitting up for many minutes at a time these days. I saw in a post from last August when she was just learning to sit up for a couple seconds at a time. Before we do trach care at night and she's on the mat with a small table attached, I will say, "Earthquake!" and shake the table a decent amount and she is still able to keep her balance now, while also laughing! Her abs are getting quite strong and useful.

    Emma loves laying on the wood floors and will continuously kick her legs until she is off the soft mat. It is possible she likes this because the floor is cooler, even though Michael keeps the AC at 73. And there is no point in moving her because two minutes later she'll be right back on the floor!

   Those eyelashes!!  Since I started holding Emma while watching shows on Netflix during the day, I also began sitting her in my lap while reading her books, instead of keeping her on her back and holding the pages above her head so she can see the pictures. However, she still tends to look around at other things besides the illustrations and like laying sideways instead of sitting up straight. I'm still getting books from the library, but there are several books in the closet that I have not read to her yet- including a few she got for her birthday and the two I got after our North Georgia cabin trip in March about hiking the Appalachian Trail!
   (On Netflix I'm currently enjoying "How to Live Mortgage Free", which is a type of British mini-documentary show with six episodes, mostly about people living very frugally or building their own houses or living on boats so they can pay everything off super quick!)

  I love that Elvis hair. And even though I don't post much about Sasha (this blog isn't about her!), she is still kicking! She will be 12 in human years next month.

     Last week I woke up at midnight from whatever noise I heard. I heard Emma coughing and reached out for Michael who was still awake as his side of the bed was still made up. I heard him suctioning her like normal. I took my sleep mask off and freaked out when I saw the red lights through the window and peaked through the blinds to see an ambulance. I rushed into her room, "What's wrong?! Is she okay!?" This then made Michael concerned and I asked if he had to call 911 about something. But he would have definitely woken me up first and I would have helped him do an emergency trach change or whatever else he needed for us to trouble shoot together before calling 911. But the ambulance had parked directly in front of our house. We both looked outside again to see the EMTs walking up another person's driveway.

 Below Emma sporting her favorite look: We call it Piggy Nose. Sometimes she will purposely adjust her glasses that way and then put her hand down again. It's possible she is just doing it to be silly, but she has another eye appointment in August and she may get a new prescription then.

    Emma was so happy to get a piece of mail that was not a bill from the insurance company, which do get addressed to her. My cousin, Lindsey, who visited at the beginning of the month, sent her a post card from the Bahamas! She headed down to Miami and enjoyed a three-day cruise with one of her friends. We also loved getting a few birthday cards for Emma in the mail last month. :)

The Mommy Cow Experience (Breast Pumping, 2017)

   Recently, on another (non-medical) family blog that I follow, the mom was writing about her breast feeding experience as she was currently weaning her youngest children (twins) and I thought it would be nice to revisit my time in writing as well. I had not talked about it much, back when I was all happening two years ago, since it seems like kind of a private topic and I was focused more on the medical information, but it is a very natural part of life, although one I did not really get to experience.
   For some reason I imagined the breast milk filling up quickly the very moment the umbilical cord was cut, but it was the fourth day before I was actually able to produce enough for Emma to be taken off of the donor milk. The first day, although I was pumping every couple of hours, I could barely make more than a couple drops. The second day I think I got up to 5ml by that evening, which I was so proud of. I started taking gross tasting vegetable Fenugreek pills to help with production. I wasn't sure if they helped or not, but I didn't want to stop taking them in order to find out. I felt like pumping was the only way I was able to help Emma while she was in the NICU with her variety of medical concerns. I didn't enjoy pumping at all. It was painful, especially the first pull when I turned the machine on. I always held my breath and grimaced. I was able to use the hospital pump for the first two weeks and then I was provided a smaller Medela home pump by my insurance company.
   I was very tired the first few weeks and literally felt like all I did was nap and pump, nap and pump, which is probably how I lost nine pounds of baby weight in the first week!  I had alarms set on my phone for every 3-4 hours (because pumping every two hours as the hospital suggested seemed very unrealistic to me). I went back to work three weeks after Emma was born to conserve the rest of my medical leave time, most of which had to be used while I was on bed rest for five weeks before she was born and then the three weeks after her birth. So I only had four weeks left in the fiscal year, and since I was hopeful and incorrectly assumed she wouldn't be in the NICU for too long, I wanted to save those four weeks "for when she comes home".
   Having to pump at work was pretty awkward, even though everyone was super nice about it. When the assistant supervisor (a male) asked if I only needed to pump once a day I laughed and stated, "I wish!" By then I had decided that I would pump every four hours while at work. I was able to use the supervisor's office for 20-30 minutes each day at 9am, 1pm, and 5pm, plus at 4:50am before work -- I work 12 hour shifts -- as well as at 9pm before bed and in the middle of the night around 1am. So for several months I was running on a lack of sleep while also working full time, alternating between 36 and 48 hour weeks, since that is how our schedules work at my job. I carried a small lunch box with me and kept it in the mini fridge at work. It also had one or two ice packs in it to make sure the milk stayed cold.
   Sometimes I would pump a little extra to keep up my milk production at 6:30pm when my shift ended if I was going to the hospital after work since, at the time, around July and August, the NICU lobby employees were not allowed to let anyone in between 6:30 and 7:30pm when the day workers and night workers switched shifts. The hospital was about 20 minutes away, and it seemed pointless for me to just sit in the car for half an hour until the doors opened again. Sometimes a specific male employee would let us in at 7:25 or even 7:20 and that was exciting! Luckily, a few months later, I was very happy that they got rid of that rule, so I would go straight to the hospital after work most days and get to Emma's room by 7pm to see her and hold her for a little bit.
   I was also provided a hand pump which I did have to use a few times, including one day when the power was off for most of the day after a hurricane, and another day when Michael and I went to Busch Gardens, where I brought the mini lunchbox and freezer packs. I also brought a large towel to cover myself while pumping in the front seat that day. I worried about my milk getting spoiled during the hurricane, but Michael had filled a big Styrofoam container with ice, so I buried each two-ounce bottle that I pumped. The hospital re-opened that evening and I took all my milk to the NICU for her.
   I was very lucky to never get mastitis (an inflammation that usually results in a fever), but maybe that is mainly caused from breast feeding and less like to occur when solely pumping? However, one day at work, I did have a clot that caused a lot of soreness. I always brought wash clothes and on my regular breaks (I felt guilty getting regular work breaks as well as more breaks for pumping, but everyone was very generous and understanding about it) I went to the handicap stall and soaked the washcloths with hot water, hoping that would help. It had the opposite affect and only helped me produce more milk, causing the clotted breast to become more sore. The next time I pumped I gritted my teeth and cranked the pump to the maximum suction level (I usually had it at about half volume), which did the trick and my two-ounce bottle filled up within a minute! I was also very lucky to never forget my pumping bag on my way to work with extra bottles and labels. It would have been a hassle to have to hand pump since that takes a lot more time and energy.
   When Emma was three or four months old, I asked the nurse if I could try breast feeding her while I held her and the nurse thought that was a great idea. I don't know why nobody else suggested this when she was much younger, like when she was six days old and we got to really hold her for the first time, or why I hadn't thought of it until then. Everyone was more focused on skin-to-skin, so I usually held her without my shirt on (with my bra and plastic LactiCups so the milk wouldn't leak on to her).
   The first breast feeding attempt was definitely not a private moment as several other nurses, plus Emma's physical therapist (Dana), and my lactation consultant (Nellie) who helped me the first two days after Emma was born, were all in the room, hovering over me. Nellie grabbed me and began trying to squeeze milk into Emma's mouth. I was thrown off, as she didn't even ask permission to touch me first, but I didn't say anything since I know she was just trying to help out.
   Since Emma was older and had never breast fed before, she didn't seem to know what to do and didn't know how to swallow (something that Speech Therapy is still working on with her). She didn't suckle, but it looked like my milk was going in, until we saw it slowly stream out the corners of her mouth. We only tried this on two different occasions before giving up. She was still getting my milk via G-tube, and I held her on my chest often so my milk was still getting the special nutrients since my body knew that Emma was near me.
   I have two pictures of me attempting to breast feed Emma, but they were too revealing to post (I'm glad I have them though), so instead I'll post other pictures from those days. And you can see a few other pictures from around the same time in this post from October 2017.

  Unfortunately, Emma's stools were pretty watery and they began hurting her to the point that she would often pass out from crying so hard. She would cry each time she pooped and at one point she even had a prolapse from her rectum, meaning parts of her insides were seen coming out of her bottom because she was pushing too hard. I tried changing my diet a few times, including being vegan for more than a month, incase she was allergic to dairy. However, one nurse (Sunny) was concerned that me eating too much salad was also hurting her because the fiber caused her to poop more. It turned into a vicious cycle, and the dietician asked that I go back to eating a regular diet, including meat, if I was not a true vegan. By October they tried her on a soy formula called Alimentum and eventually switched her to a more sensitive formula called EleCare. She is currently on EleCareJr (for ages 1+).
   The doctors decided that they would keep Emma on that once the prolapsing stopped and they told me that I didn't need to keep pumping. Although I knew all the benefits of breast milk, in Emma's situation, it was hurting her more than helping. So I was very excited about getting to stop (meaning more sleep for me!!) and immediately started the weaning process by wearing tight sports bras and putting cabbage in them, as recommended. The first few days I waited until my chest hurt and obviously needed to pump, but only pumped for about 10 minutes instead of 20. I did some research and modified it to meet my needs. I felt bad dumping the milk, but did so since Emma wasn't going to use it anyway. The next few days I only pumped in the morning and at night, and the last day (which I remember was Thanksgiving 2017), I only pumped at night. That was my last time. Once in a while I do feel tenderness, even now, as if my body is still trying to make milk, and a friend told me that our bodies keep the ability to breast feed again for the next seven years, even with only one baby!!
   In January 2018, a few months later, while we were at CS Mott Children's Hospital in Michigan for Emma's big surgery, Winnie Palmer Hospital called me asking what I wanted to do with all of my leftover milk that they still had stored in their freezer. I told them they could dump it since Emma was only going to use formula now. The lady I spoke to seemed hesitant, "Are you suuure..? It's a lot of milk." She said I had the option to donate it and all I had to do was get a blood test done, which I was able to do at the hospital in Michigan. (I had told her we were staying at the Ronald McDonald House, so I wasn't able to drive to a random doctors office for it. So I did the blood draw at CS Mott, and she asked for our address at the Ronald McDonald House so she could send me some paperwork for me to sign. The next month I was sent two certificates that I still have hung up on the wall, listing me as an official Mother's Milk Bank of Florida donor and I continued getting emails for several months, letting me know which hospitals around Orlando, Tampa, and Jacksonville that my milk had been sent to. They said in total I had donated 1,188 ounces of breast milk. That's over nine gallons! So who knows how many gallons I was able to provide for Emma. :)