Well, we've made it a month. I think this is where I'm supposed to say I can't believe it's been a month already or it seems like just yesterday Ellie was born. But when I think about Ellie being a month old today I can't help but think, is that all? It feels like a lot longer than a month that we have been away from Scott, living out of suitcases at my parents' house, and constantly imposing on everyone around us. I am ready for life to get back to normal, although I'm not really sure when life will ever feel normal again. We just take it one day at a time. So here's the update.
Weight
29 days - 6 lbs 8.5 oz (0.8%) 19.5 in (1%)
Even though her weight gain slowed a little, the doctor was very happy with her average weight gain over the last two weeks. We are continuing the calorie packed bottles and don't have to check her weight again until 2 months! Crazy to realize at 1 month old she is still smaller than all of my other kids at birth (Mason 8 lbs 2 oz, Brynn 7 lbs 9 oz, Miles 6 lbs 10 oz), even Miles who was technically preterm.
Eating
I met with a neonatal occupational therapist to evaluate Ellie's eating since she continues to choke very frequently during feedings. It took her all of 30 seconds to determine that Ellie is not able to swallow thin liquids very well. We are now thickening her bottles by adding banana baby food to them. By thickening the milk it slows it down and makes it easier for her to control it as she swallows. She also showed me several different positioning techniques to use when feeding her. Her eating has drastically improved with all of this! The occupational therapist was very concerned about the suprasternal notch retraction that is extremely prominent in Ellie. The doctors have been attributing to tracheomalacia but she strongly suggested that we see an ENT (ear nose and throat doctor) to rule out such things as laryngeal webbing. So that's up next on our list of things to get checked out.
Breathing
Oxygen has been weaned down to 1/32 which is the smallest amount possible. We still have to go up to 1/8 while eating. It sounds like the last step of getting her weaned off the oxygen entirely takes some time and so it will probably still be a couple weeks if not a month. Once again, I'm trying not to have any expectations, but just take it a day at a time.
With our whole life getting turned upside down and our definition of "normal" completely changed, I often wonder what is going through my kids' heads. Here are a few great quotes from them about Ellie.
Mason was holding Ellie for the first time in the hospital and she was breathing really noisily and he said very matter of factly "Ellie snores just like Grandpa."
Since the kids weren't able to come see Ellie after she was born my mom showed Brynn a picture of Ellie. After looking at it for a minute Brynn said in total amazement "How did she get that bow on her head in mommy's tummy."
Mason was talking to Ellie while she was awake one day and then looked up at me and said "Ellie is the best baby on oxygen I've ever known."
Whenever I say things to Brynn like, "you wore that when you were a baby" or anything else that compares Ellie to another baby she quickly pipes in, "Yeah, but I didn't have oxygen." Brynn is very aware that Ellie is different than most babies and will always point it out when I act as if she is the same as everyone else.
We were in the kitchen when one of Ellie's monitors alarmed and Miles pointed toward the living room and said "Baby". Miles now thinks any beeping noise is associated with Ellie.
Brynn loves to tell everyone about her baby sister and how she's can't go anywhere because she is on oxygen. The way Brynn says oxygen in her little voice is pretty adorable.
Mason made Ellie a note at church last week that read, " Ellie you are as cute as a baby alligator." You have to know Mason to know this is actually quite the compliment.
We are to the point where we don't have to follow up with the doctor this week, so I guess the next Ellie update will come whenever I have something to update on.
Thanks yet again for all of the love and support. I don't know how we would be getting through this without all the help we have received, especially from my parents. My mom has put her entire life on hold to help us at this difficult time and while I hate not being self sufficient, I honestly could not be doing this without her. Thanks mom!
Sorry for no pictures. No time today.
