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.