Doubled in Weight

  As of the end of September, Emma has more than doubled her birth weight. She was 3 pounds, 3 ounces when she is was born and last night the nurse told us that she weighs 6 pounds, 9 ounces. We are so proud of this little baby. She is so strong and brave and I hope she knows that life will get a lot better and that it won't always be like this. We just have to figure some more stuff out and keep praying.
  In a couple of the pictures you may notice that I'm wearing a bikini top. I thought it would be better for Kangaroo Care (skin to skin) but this is one sweaty baby and she seemed to get uncomfortable when she got too warm. My mom visited about two weeks ago during that time and was able to slip a blanket between Emma little body and my arm and chest. She fell back asleep then. Once in a while she will try to figure out how to suck her thumb. I love watching her figure it out!

Our Best Days

   In the past two weeks, Emma has had her very best days, as well as a few of her worst days. Our emotions tend to feed off of how she is doing, so Michael and I have also had some really great and really sad days recently. But I'm just going to post pictures from the wonderful days because those are what I want to remember more.

   On September 13th, Emma was switched over to the LTV home ventilator and the doctors started talking to us about her coming home in six weeks (around October 25th), and apparently the nurse she had tonight said it still says in her chart that Emma is scheduled to be discharged next month, so maybe it all depends on how October goes? We assumed her discharge was on pause for now. On September 14th, I got to hold Emma and after having her in my arms for a few minutes I told the nurse (Kim) that I often pictured holding her up on my legs so I can see her better. Kim suggested that we try it since Emma needs to practice sitting up more anyway, like she would be in a stroller. Kim took a few pictures for me, which I really appreciated since they are better than "selfies". The first picture is of the LTV vent, but one of her RTs (respiratory therapist) thinks she might do better on the Trilogy ventilator and that one is smaller, which is nice since she will always have to be attached to it (we would have to carry it in a backpack or store it under the stroller when we go places). If that's what they want to try Emma on next, they will have to get one ordered for her.

Playtime!

 Sometimes I wonder if there are ghosts in her room because she will stare up at the corner area of the ceiling for a while. Actually, it's probably all of the angels watching over her! :) When she isn't looking at the ceiling, she likes to watch her monitors. I let her know when the numbers are good so she can relax. We wonder if one day she will be a NICU nurse or doctor because of how much she watches the monitors. Or maybe she just likes it because it's like watching TV?

  We don't really know why, but suddenly last Wednesday (Sept 20th) Emma had a lot of episodes, when normally she would only have one or two a day. That day she had seven just between 8:30am and 6:30pm, and three more during night shift. The nurse was concerned about it on Friday night and suggested that we come up with a plan "in case she doesn't make it". No thank you!! I cried and prayed a lot that night, and it seemed to help because since Saturday Emma has been doing better and back to almost not having any episodes, or when she does they aren't too serious. Michael once asked if her episodes could cause brain damage, so now I have to pray for that to not happen too! For those wondering, an episode starts when Emma gets aggravated about something. There are several things that could bother her including being too sweaty, not being comfortable in the way she is laying, being hungry, wanting her pacifier, if she has a dirty diaper, having a lot of gas, or teething!  Her oxygen level starts to drop and her color starts to change from pink to gray to purple. Often she starts crying (inaudibly) and will arch her back. Sometimes just putting her pacifier in makes her happy and her oxygen level (I call it her happiness level) will go back up between 96-100. If it gets between 76-82, we will give her a boost of oxygen, usually by 10% and that can help too. For the times it doesn't, she can turn dark purple and even pass out. I hate so much when that happens and I definitely cried the first few times I saw it, but now I have to stay strong and help get her out of it. When she wakes up again after getting manual breaths from the ventilator or being "bagged" (a long tube with a ball that we can squeeze is attached to her trach, which is like CPR for her), she often seems really out of it and will slowly turn pink. We hate when she has to be bagged because each time her vent is detached, even for 5 seconds, her lungs collapse. How scary! She is so brave.

  Anyway, the other best day- maybe her very best day ever- was yesterday. I got to hold her again for two hours. We stopped putting clothes on her just because of how sweaty she gets, especially if she gets crabby and starts moving her arms around a lot. She also nuzzled for the first time after rooting around (rubbing her face all over my chest like she was looking for the milk source). I told the nurse (Lori) that I wanted to try it, but hadn't been given permission since they think Emma often has her liquids go down her trachea rather than her esophagus which is why she has the G-tube to slowly push her milk or formula straight into her stomach. But Lori told me to try it and Dana, the physical therapist, thought it was the best idea ever.  Nuzzling is like breastfeeding without her really getting any milk. It's more for her to practice the action of breastfeeding.

 Michael swears that her eyes are blue (like his), but to me they really look like they are gray. Or at least 70% gray and 30% blue. Definitely gray-blue. In the picture below she is watching her monitors again. The monitor that is attached to her leads (the little sticky pads on her chest) and her probe (which is usually wrapped around her foot) keep track of her heart rate and oxygen level. She watches those often. I also look at the ventilator monitor to track her breaths. They are green lines and if there is a white line that goes up on the inhale, then Emma took that breath herself. If the line is fully green, then it means the vent gave her the breath because she took too long (more than 3 seconds) to do it herself.

 That eye kills me ^^ the one that goes crossed sometimes. Ha!  She currently weighs 6 pounds, 4 ounces and is 17 inches long. That is almost double her birth weight and 2 inches longer. They want her to grow longer more than they care about her weight since length will make the lungs grow bigger and stronger. They also believe her episodes are caused because she has tracheomalacia and bronchomilacia, which is the throat cartilage being too soft and floppy that it closes in on itself if she tries to inhale too much or hyperventilates. I'll keep praying that these episodes calm down so she is happy and we can bring her home mid-November at the latest.

  Michael and I are continuing to make time to spend together, even if it just consists of running errands, we like doing that together.  He told me a couple weeks ago that he wishes we had met sooner, which I was pleasantly surprised by because I know sometimes I can be extra dramatic and hard to handle. Yesterday (Sept 25th) was the 7th anniversary of when he asked me to marry him. I like when we talk and flirt about how we fell in love! :)

Changing the Trach

   On Saturday we changed out Emma's trach for the first time. That is something that has to be done about once every 10 days. The one she had before was 3.0mm in diameter with a cuff (plastic piece that inflates in her trachea so air just goes through the piece rather than breathing around the trach) and the one we put in today was 3.5mm without a cuff. She seems to like it a lot, and we also practiced "bagging her", which is when the nurses have to give her manual puffs because her oxygen level gets too low and she turns purple and/or passes out because she gets worked up from being uncomfortable and starts holding her breath or if the ventilator gets disconnected for too long. It was all just practice today because Emma was doing so well and remained alert and content.

   We visited her again that night so I could bring more milk and so we could spend time with her before the hurricane. The hospital is going on lock down starting at 7am on Sunday, so we probably won't be able to see her until Tuesday! I've never gone more than one day at a time without seeing her, so the nurse said she would try to send us extra pictures. Emma was doing so well when we saw her tonight. Nothing even made her furrow her eyebrows or look unhappy at all. She was awake when we got there at 10:30pm and stayed awake most of the hour we were there with her. She really loves sucking on her pacifiers and at one point was even holding it in her mouth by herself like a big girl! She currently weighs 6 pounds, 5 ounces, but a bit of that could be fluids from the IV she has had flowing for the past two days.

    I've been on a non-dairy diet for Emma since August 16th by request of her doctor, and that seems to be helping her a lot. She has had less tummy issues and her diaper rash is pretty minor right now, so I'll definitely be sticking to that. Today she is 3 months old and currently weighs 6 pounds and is 17 inches long. She is starting to smile more and likes looking at herself in the mirror. Her first tooth has broken through - I'm serious, we're all surprised! - and it's a sharp tiny thing. She has been doing so well after her surgeries. We really feel like the Fundoplication (to get rid of her acid reflux problem) has helped a lot and she is projected to come home in six weeks!!!!

Stomach Surgery

  Yesterday Emma had two surgeries done on her stomach. They found out recently that she has acid reflux, which was unfortunately passed down by Michael, and a probable cause of many of her "episodes". His mom and her dad also both had/ have acid reflux. One of the surgeries Emma had was the Nissen Fundoplication which ties a portion around the bottom of the esophagus that way food can get down when we bottle or breast feed her later on, but acid and other food can't get back up. Does that mean she will never throw up? Hmm.. The doctor did say usually that procedure forces body products out the other way. The second surgery done at the same time, was to get her G-tube placed. This way she can be fed through that rather than having a feeding tube in her nose, thus resulting in her coming home sooner!! She's doing well as always, such a fighter that little one, but apparently fighting to stay awake, so they keep giving her pain medicine to relax, sleep, and heal. Did I mention that she weighs 6 pounds now? :)  Here are some of my favorite recent photos of her.  All of these photos are from August, before she had her stomach surgeries.

 One of her Harry Potter onezies made by Aunt Jessica!! 

The other one says "I'm a Keeper". Quidditch reference. ;)

 My friend Lindsey told me that if babies have their hands open, they are happy!

  A few weeks ago the doctors were pretty sure that she had Larsen Syndrome as she matches all of the markers, but genetics said that it was one of the genes that got tested before she was born and it came back negative. The latest update on that is that she will have to do any genetic testing as an out patient so insurance will cover it. We talked about making a blog specifically about Emma (this one) compared to my regular one that had everything tied together. We want this blog to be a reference for families who have babies or kids with similar issues so they can see how we are handling things. Honestly, for me at least, things have been getting a lot easier as I try to "let go and let God". Plus, having family time where Michael and I visit her at the same time and do her bath and trach care together has helped me a whole lot emotionally.

Something Scary

   Today was very scary. Just one part of it that probably lasted less than a minute, but Emma passed out. Michael had seen Emma pass out before on one occasion last month, and I told him that I was so glad that I hadn't been there because I wouldn't know how to handle it. But today while the nurse and RT were lifting Emma out of her crib for me to hold her, part of the ventilator popped off and got disconnected. It was connected back together pretty quickly (probably within five seconds), but long enough that Emma freaked out and was quickly losing air while trying to inhale. She turned gray then dark purple and stopped moving, going limp. The nurses jumped into action and I wish I had watched, but I couldn't. I turned my head away and cried. I hated seeing her like that. She looked dead. Instantly I thought about how Dr. Greaves thought she wouldn't even be compatible with life, but the RT brought my attention back to today. "You can look now. She's awake." I looked back at her, still with tears in my eyes. Her eyes were open and her skin was nice and pink again. She was making a face that looked like she wondered, "What just happened?" But within minutes she was smiling and then fell asleep shortly after.
   The nurse handed me a box of tissues, but told me honestly that I might need to get used to that. "I know it's scary, but you have to be prepared for situations like that. She could pass out at home and you have to know how to help her." She knew that it probably wouldn't be just a one (or two) time thing. Maybe next time it happens I can be strong enough and watch what they do to bring her back.

  I worry about her dying. Not too often, but a lot more than I wish my mind would wander. I know that I shouldn't and that I should say a thank you prayer for every breath (whether its her own or from the ventilator) that fills her lungs and keeps her alive. I should kiss her more and tell her twice as much how special she is to me. I try to be positive for all of us and sometimes it really is pretty easy, especially if Emma is having a good day. But once in a while I dig a hole of negativity and have too many complaints. I'm only telling you this to remind you that I'm human. I feel like this blog is pretty positive and I'm trying to keep the good vibes going, but some days are really tough. It's hard having to go back to work and not be able to spend more time with her. (But since she isn't coming home yet, I am able to use the last 4 weeks of my Florida medical leave time to spend every day with her!) It's hard seeing all of the other moms get time with their perfectly healthy babies, especially when they admit that the baby was not planned for. Or even hearing other moms at the hospital gasp about how hard it was having their baby in the NICU for a couple of weeks. Michael reminds me often about how amazing it is that Emma is alive when science kind of made it seem like that wouldn't be possible. But science doesn't know everything. That's what miracles are for and we'll keep praying for more miracles.

Trach Baby

  Emma had her tracheotomy on Monday, July 31st. Michael and I both got called by the nurse practitioner and left work, getting to the hospital around 10am. She loved being free of her leg splints and waved her legs all around in the air. We waited with her for about two hours until the ENTs (Ear Nose and Throat doctors) were ready. She was put into a portable incubator called a cavatron and wheeled over to Arnold Palmer. Michael and I walked behind her, but she kept her head back as if she wanted to keep checking that we were still with her. She looked so cute and although I was able to snap these sneaky pics in the hallway, I didn't get any more before she went in since that's when the doctors introduced themselves. The main guy had to be at least 7 feet tall! 

We were escorted to the waiting room and an hour later the super tall ENT told us that everything went well and showed us pictures of her throat. Part of her trach looked pinched (like a fish mouth shape) rather than being a normal round opening, which is part if why she can't breathe on her own. Another part being that her lungs are still small and developing. After walking back to Winnie Palmer and waiting in the NICU lobby for 30 more minutes, we got to see her. I wish they had warned us about the swelling. Her face was so round and puffy. It looked like she had gained 5 pounds in an hour. Michael even joked saying, "Is this Emma?" but we knew it was because of her hair and legs. 

 And then from two days later:

  The swelling went down over the week, but that Sunday she got a longer trach put in and her face swelled a little bit (not as much as it originally did). Michael's family was here that weekend, so his brother and grandmother got to meet Emma. Due to NICU renovations, Emma was moved into a different Pod as well as getting her own small isolation room. She developed a "water bug" called stenotrophomonas that is common for people with trachs, not just babies. She was put on antibiotics for it and it has mostly gone away now, but Dr. Hardy told me that everyone with a trach always has a small percent of the bug. For the time being we have to wear gloves and thin gowns over our clothes (which actually came in very handy when I held Emma after a bath and she scooted on me). Nice to know she was so cozy and relaxed!!  

  In the picture directly below which was taken on August 3rd, I almost started crying when she opened her eyes because it was so good to see. Getting her trach put in was as if she had just been born again because we didn't get to see her eyes open for a few days, so it was something we were looking forward to. Plus I like when she looks at me and really knows I am there, although I know she can smell me and hear my voice when I talk to her or the nurses. After that we had to wait for her to smile for the "first" time again, which I saw on August 11th. She closed her eyes when I came in and gave 3 really great smiles, but I didn't have my camera so I just captured it with my memory. 

 The next four pictures were taken in the isolation room of Pod 3. I felt so bad when I was holding her this night because she was having a hard time breathing on the ventilator. A lot of quick breaths rather than long, deep breaths. Her hands were moving around a lot too and I knew she was uncomfortable, but I wasn't really able to calm her down. I just held her. 

  On August 9th Emma got moved again to another room that holds her and another baby. They also switched her into a crib rather than the table bed she had been on for her 8 weeks before that. She turned 2 months old on Saturday, but we haven't taken her 2 month pictures with the big bunny yet. That day she was having a harder time so we definitely didn't want to bother her, since I want her sitting up in the picture. Last night Michael and I gave Emma a bath and changed her trach ties all by ourselves while the nurse supervised. Sometimes Emma is patient with us, other times she hates it, but she's such a trooper.  I also took her temperature and we changed her outfit. We definitely need more practice, so hopefully we will go back to visiting her together rather than separately after work or on days off. 

The current hurdle to overcome for Emma is learning to breathe well on the ventilator that she would use at home. In the past two weeks she has been switched back to NAVA several times (depending on the nurse), which she seems more comfortable on. I really hope she can come home in September.