Emma came home from the hospital on Sunday April 22. I now possess a talent that few out of the medical field will ever have. I can successfully place a feeding tube. Over the last month I have had to replace it several times and I've done quite well, if I do say so myself.
Emma is doing OK. OK meaning she is doing well considering all the horrible things that are happening to this sweet little girl. Considering she has a hole in her heart, which is causing her heart to enlarge and that is causing the enlargement of her lungs and liver as well, she continues to hang in there. She definitely has good and bad days. She throws up a lot! I rarely make it through a whole day with the same outfit. I can't pinpoint what is causing it all the time. It think she looses her feedings for different reasons. A lot of it has to do with the feeding tube. She has such a horrible gag reflex that if anything makes her gag, she looses it all. Sometimes she is fed to fast, sometimes it's the way the tube is placed and irritates her and sometimes I don't know what to think.
But despite loosing a lot of food, she is finally gaining weight. As of Tuesday May 15, she is finally back on the chart as far as her weight. She is now a whopping 8lbs! And that places her in the 1 %tile amongst other babies her age. However, her height places her in the 56%tile and head size is 87%tile. She is very long and skinny. 15 lbs is the ideal weight they want her to be. Still seems so much to gain in just 4 months.
Within the last 2 weeks, Emma is now gaining the minimum amount they want her to. 20 grams a day is her minimum. She did just that. We are doing some things right!!
Emma is such a strong spirit. If she wasn't a fighter she might not even be here. Despite all of this, she is so active. She loves to kick and move around. She is a pro and holding her head up now. It stresses me out to see her move. I just want her to lay still and gain weight, not burn calories and ease the stress on her poor heart.
Developmentally she is right on track so far, except for cooing. She doesn't coo. She barely makes any noise, ever. Which from what I have researched online many children with Rec 8 have speech problems. This worries me to no end. She will occasionally cry if something really makes her mad ie shots, being in her car seat for too long and the last time we were at her cardiologists, for some reason the stethoscope made her cry. Getting her blood drawn however does not. I think she's had so many of those pokes she's used to it now.
So for now we are staying the course. She's gaining weight and her symptoms have stabilized, which makes her doctors happy. We see her pediatrician every other week and we alternate the off weeks with her cardiologist. In the last couple weeks we have also started seeing Kids on the Move which will give us all the tools to help Emma stay on track. Early intervention is the key. The greatest part is they come to our house! So far we have a occupational therapist coming to work on feedings and to make sure we don't create an oral aversion for Emma. We don't want her to loose the will to eat. We will most likely start seeing physical therapists and developmental therapists over the next several months. It's nice to know that she will have the help that she needs when she needs it. Most of these things will start after her surgery.
We have our appointment with the geneticist on Wednesday. I have a lot of mixed feelings about this appointment. I'm interested to see which way it goes. I've heard good and bad about geneticists. The geneticists office has already called 3 times in the last 5 days to confirm the appointment. They must have a lot of no shows, which surprises me. If you have to see a geneticist you would think people would want to make sure they were at that appointment. It's not just your average physical.
My other children and crazy, but fantastic. They tend to act out, a lot, whenever I feed Emma. I understand this, but I don't appreciate it. I try to find something cool they don't normally do or schedule their meals while Emma eats, but in my zombie like state it doesn't always allow things to happen that way. It takes about an hour to do a feeding, at which time my children have learned I can do nothing to them. They take advantage of that far too often.
I am only getting about 4-5 hours of sleep a night. And that is broken into 2 segments, because I have to wake up to feed Emma. I'm hoping at her doctor's appointment on Tuesday they will give her a pump that will continuously feed her throughout the night so I don't have to wake up to do it. She rarely wakes up for the middle of the night feeding. I have to set an alarm to wake up to make sure she's getting the intake she needs, so I sit there and wonder why I am awake holding a tube of formula while she sleeps. Especially when I just found out a machine could be doing it for me! I would love to be myself again instead of the hollow shell of a person this lack of sleep has created.
Other events of the last month:
* We finally got everything out of our old place. Randy did an amazing job cleaning it out all by himself. With all the events of our life, it really did take us 30 days to get out and clean. It was nice to have 2 places for the month of April. And amazingly we got all of our deposit back. I'm still in a state of shock.
*Beck finished soccer. Loved it. Now we wait for T-ball to start in the middle of June.
*We officially moved all the stuff out of my parents house they have been storing. This may be more exciting for them than it is for us. Their home looks oddly empty now.
*Randy finished spring ball and has had most of May off. So I've been putting him to work. We have a lot of furniture that has the potential to be nice. Yesterday he went and bought a power sander and started getting some of it ready to paint. In all, we plan on refinishing the boys' dresser, Emma's crib and dresser, our kitchen table and chairs, a hutch, a desk, shoe rack and a toy box. And that's just what is currently sitting in my garage. I'm sure more will be added as time goes on.
One day we will finish moving everything into our new place. Probably months from now.
Randy will be coaching the summer camps at Utah in June and then thankfully he has July off to finish all these crazy projects before football season sweeps him away.
And now some pictures of my adorable children from the last month:
|Pediatrics has a really cool playroom for patients and their families. My boys miss it terribly.|
|The boys flock to Emma, like a moth to a flame whenever she's out of her bed.|
|My Grandma Pat came down for a visit|
|Aunt Wendy visiting. My boys have been talking about their visit for weeks.|
|So handsome. This is why we keep them around|
|Beck loved soccer. Randy loved buying gear for soccer. Just wait for T-ball, there's even more gear.|
|I couldn't find Trey the other day. He was asleep on the chair.|
|Emma's favorite thing to do is watch her brothers. She is eager to be apart of the action|
|Beck helping Randy sand his dresser.|