How Can You Miss Us if We Never Leave?

I don't wanna work. I just wanna bang on my drum all day!


Here is our little good luck charm wearing her St. Patrick's Day shirt. Cousin Ava wanted to know if Amelia had told us what team she roots for yet. She roots for the Irish...and the Huskers.


Hanging out in the pediatrician's office, waiting for the doctor to come in.

We moved out the coffee table to make room for all of Amelia's equipment. She takes naps in the pack n play during the day. She is chilling out next to me on the couch!

Sorry it has been so long since the last update, but taking care of Amelia is quite an undertaking...and anyway absence makes the heart grow fonder, right?

We have our routine down and it isn't as hard as it was in the beginning now that we have everything pretty well organized around here. On weekdays I get up around 6:00 am for her first meds and feed for the day. We pretty much have a feed every four hours and a med almost every two hours (some things are on an empty stomach and some are with food).

I usually move her out of bed into the family room, change her diaper, take care of her g-tube site by cleaning it with water/peroxide and get her out of her jammies and into her daytime clothes. If she sounds congested I put a few drops of saline water in her nose and suction her out. She is usually awake for all of this, but she eventually falls back to sleep for an hour or so once her feed starts.

Todd will then watch or play with her while I shower and get ready for the day. Then I take over and he heads out to work.

At first we always had the pulsox on Amelia all day long. After two weeks of that I made the executive decision that I would only put it on her if she is sleeping and I also want to take a nap (which I have not done but maybe once) or if I had to step away from the room for any length of time to do something and couldn't keep a visual on her. It went off unecessarily constantly and it was wearing on my nerves pretty bad so we are just using it for spot checks now.

So during the day we do a combination of activities where she is interacting with me or by herself, some where she is sitting up, some where she is on her tummy and some where she is flat on her back. Since she doesn't do as well on her back and she is on it for 8 hours anyway at night, I try to minimize time in this position. So our activities include snuggling, laying on her tummy on a blanket with toys, jumperoo, bumbo time, and activity mat propped up a bit on her boppy. I also like to have her sitting up against the corner of the couch where the arm and back meet. I put a toy between her legs or something else she can beat on with her hands.

As an experiment I tried to put her in a sling to carry on the front of me while I did household chores. She seemed to have fun as I struggled to position her inside the sling. Then I finally got her in it and she seemed to be OK with it, but she hung so low I was having to put my hands under her rear to support her -- which is totally not the point -- the point is to keep your hands free. I was just afraid she was going to fall out and she was sitting below my waist. I need to try adjusting it some more and experimenting with it.

So then Daddy comes home around 6:00 and I have been so good -- I have been cooking dinners. I haven't done anything much domestically for a year so it is actually kind of fun. I also am keeping up with laundry -- which ask anyone -- this is a totally shift in my habits. Anyway, once Todd comes home he is in charge of feeds and meds until the last one is done . He usually plays with the baby until I get everything ready for dinner or I will make dinner ahead and we load her up in the stroller and put the dogs on leashes and we go for a stroll around the neighborhood. Then when we get back I'll heat everything up and serve it then.

My idea is to have her sitting on her bumbo on top of the kitchen table to be part of dinner with mommy and daddy so she can understand that dinner is a social and bonding activity as well as getting nourishment. Hopefully this will help her later when we really get serious about transitioning her from her g-tube to oral feeds.

The weekends are time for mommy to get a sanity break. The last couple Saturdays I have done her 6 and 8 feeds and meds and gotten ready and gone shopping...for a good long time. I had a uniform when it came to dressing for the hospitals that varied rarely. Jeans, tank top, hoodie, tennis shoes. It felt really great to go somewhere and not feel guilty that I needed to be somewhere else or that I was spending enough time with Amelia. It has been relaxing and therapeutic -- and I have gotten some new clothes that are not part of the "uniform." I also have been grocery shopping for the meals I have been cooking and doing errands like bank deposits.

We have also had 3 pediatrician appointment and 1 pulmonology appointment since her discharge. We have a opthomology and surgery appointment on Monday and then endocrinology on the 22nd. We also have to have an appointment with cardiology at some point. Pulmonology will be approving her weaning on her oxygen, oversees her sildenaphil (which we finally got approval from our insurance company for), her flovent, diuretics -- well basically all of her meds, because they all effect her lungs. Cardiology will do her echos to monitor her pulmonary hypertension.

Basically Amelia just needs to grow and get bigger and develop healthy lung tissue and all of her lung related problems will go away. She will wean on oxygen, her hypertension will go away, she won't need diuretics, etc. She has significant lung disease so she could be 2 years old before she is off of her oxygen -- it could be longer. The pediatrican adjust her feeds so she is getting more volume. She thinks she should be gaining more weight. It is kind of a tightrope between too much and have extra fluid and enough to make sure she is growing her lungs.

Amelia rolled from her stomach to her back the other day in one fluid motion. She needs more tummy time to practice, but I have been reluctant to put her on the floor a lot because she either goes to sleep from struggling with the effort or the dogs circling around her and annoying me. Anyway, Todd is out with the dogs right now getting some exercise time in and put her on the floor on her tummy propped up on her arms and the first thing she tried to do was turn over. We have practiced about four or five times in a row and she keeps trying to roll over on her own.

Developmentally she is doing great. She laughs and grins and kicks her legs and is babbling a lot. We have not taken her to any therapy yet. Right now it is still RSV season and I am reluctant to have her out and about more than she needs to be. The pediatrician also said she would try to see if she could get our insurance to pay for an in-home therapist to come in. But we haven't heard anything from that end either. I will have to call Monday and if nothing happens, we can't wait any longer for her not to have any therapy. There is a great place that a lady that works with Todd has recommended and we also recommended it to Amelia's beau Nathan -- and his mom raves about it. So I know we would be happy there also.

ECI (state program -- early childhood intervention, also in-home therapy) still has not called us to set up an assessment...and I have been told anecdotally that the model around here is a teaching model and not a doing model. They come in and instruct the parent how to do the therapy but do not work intently or on a consisent basis with the child. If we are going to have to pay for this service or have our insurance be billed for it, we may as well get better therapy for her.

I have prattled on enough about everything for now. Basically everything is fine. Amelia is doing great. We are all better mentally. She is a ton of fun. I feel productive. Best of all we feel like a NORMAL family.