Echocardiogram

Today was an early start for us. We headed down to PCMC at 6 am to get Abby checked in for her echo. First they sis a chest xray. There was a little wispyness in it, but it was so much clearer than the xrays she'd had done last year when she was still in the U. Then we got her ready for the echo. They put in an iv to administer the meds. She cried of course, but they got it in quickly. They have iv teams at Primarys that are very experienced in putting iv's in babies and children. They just gave her small amounts of meds to keep her under. Each time she'd start to rouse they'd give her a little bit more. This way she came out of it very quickly. After they finished with the echo they also did an ekg while she was coming out of the sedation.

The echo results were great. The walls of her right ventricle are thinned back out so her heart isn't working hard to get the oxygen to her body. The ekg wasn't perfect so she'll have another one done in 3-4 months after she goes off the oxygen at night. That won't happen until she has one more test here at home and the pulmonologist gets the results and okays it. Hopefully that will be within the next couple of weeks.

After we were done there we went next door to the U of U nbicu to say hi to some of the staff that took care of Abby so long last year. Then we were on our way back home by 11 am. It was nice to have Daddy with us since he's not usually at her appts. He was able to meet a couple of her drs. and help with her when she reacted to things with tears. Infact, as soon as we entered the hospital she started crying. She's just too smart.

Here are a few photos of her day. Just love the look of a sedated baby.

Life in Utah

We had a wonderful Easter celebration. Joshua and I went to church where I led the children's class. Then we all went and had dinner with our Pastor, Derek, and his family, along with another couple and their baby boy. It was a very nice afternoon. Because we have to keep Abby underwraps until RSV season is over we haven't really gone anywhere as a family since November. Can't wait until summer is here and we can all get out and about.

We attend Lakeside Church here in Davis Co., Utah. We'd been meeting at an elementary school until last summer when we finally purchased our own property. It's actually in a residential neighborhood but we were able to get the zoning necessary to use the property for a church. The pastor and his family live in the house, but we use the livingroom downstairs for the 4-11 year olds and the dining area for the nursery. The garage has been converted into a meeting room where we are holding services right now. There is a barn on the property that is being converted into the main sanctuary with a nursery and 2 bathrooms. Mark has been doing a lot of work on the plumbing and gas lines. The goal is to be in the building by Mother's Day. The following Sat. there will be a wedding and then we will have a grand opening on the 17th. The plan is to have Abby dedicated then. My Dad and Stepmom will be here for it. Abby isn't used to being around a lot of people and gets pretty upset until she has a chance to feel comfortable. We'll see how she does. If you want to check out the construction progress on the church check out our website http://www.itstimeforsyracuse.com/

Surgery Update

So Abby had her tubes placed in her ears yesterday. We were to be at the surgical center at 7:40 am. After the anesthesiologist took her back I went into the waiting room. After a minute I checked the time on my phone and it said 8:18. Shortly after that I was told that the surgery was over and shown to a small consultation room where the dr. would come out and talk with me. I looked at my phone again and it was only 8:27. That's what I call a fast surgery. About 10-15 minutes later a nurse opened a door and had Abby in her arms. I followed her into the recovery area where she handed Abigail over to me. She was quite fussy for the next 1/2 hour, but part of that was probably because she was in a medical facility. About 2 months ago she decided she's had enough with all of these dr. visits and now cries whenever we go, even if she's just being weighed. She's also been going through the whole stranger anxiety off and on. We were back home shortly before 10:00. I hooked her up to a feeding at this time and she took her nap. She fussed a little more, but nothing major. By time I got her out of her swing she was ready to get back to the business of playing. We also kept her on the oxygen for the rest of the day just incase the sedation caused any problems.

Today she's been sneezing more and has had a runny nose. We'll see if the new tubes keep her from getting an infection. She's getting antibiotic drops in her ears for the next three days as part of the surgery follow up care. This may help too. I just don't want it to go into her chest. Joshua is still stuffy and coughing too. He usually doesn't have a cold hang on this long. Hope he's done with it by time school starts up again on Monday. I'm also dealing with the nasal congestion and sore throat. Not my favorite thing. It's worse in the evenings and when I wake up in the morning. So far Mark has kept clear of it, which is unusual. He's usually the first one to get it. It will be nice if he stays healthy.

I have some more photos, but haven't gotten them put on the computer yet. I'll have to work on that tomorrow. We've been having both computer and internet problems for the past couple of days. Tomorrow is also egg dyeing day. Joshua should enjoy it now that he's older. We decorated cookies yesterday and the day before-eggs, flowers and butterflies. We're supposed to do a community egg hunt on Saturday, but it's also supposed to rain. If it's raining like it was this morning we'll just be doing our own backyard hunt on Sunday. It's supposed to be clear by then.

It's been quite a while

My last post was Sept of 08. It's now April of 09. I could say, "Oh, how time flies," but the truth is that I haven't been very motivated to do much of anything. Since all of this happened with our little one I've struggled with getting things done beyond the bare minimum needed to keep things going. Some days are better than others, but then something happens that just overwhelms me again and I put things off...and off.

Abby has been doing well for all of the difficulties that she has faced. She is crawling all over now and likes to get up on her knees. I'm sure she'll be getting herself into a standing position soon, and then walking is right behind that. She is also off of the oxygen during the day. She may be able to get off it at night by the end of the month, but we'll have to wait and see. She has a test on the 21st to see if her pulmonary hypertension has cleared up or not. That's a big part of the equation. I'm very thankful that she has only had a small cold that she picked up from her brother during the Christmas break. Of course it led to a perforated eardrum, and another one in Jan. She hasn't been able to clear the fluid out yet so she is having tubes put in on Wed. Hope all goes well. Joshua is sick now (Spring break this time) with sneezing, congestion and coughing. This is what happened last May right after Abby came home from the U of U. Then she was right back in Primary's Children Medical Center for another 2 weeks. I don't want to repeat that. She's much stronger now, but a cold could cause problems for her surgery this week.

Joshua is doing well in school after a rough start. He was having problems being the class clown, but they also had 30 or 31 kids in his kindergarten class. Shortly after the new year they broke the classes up so now he only has 20 kids in his class. It really seems to have helped. Although, he is still my stubborn little guy. He's really cathcing on to this reading thing and loves math. He started soccer, which he's not too sure about, but it's good for him. Now that the weather is starting to get better we can hopefully start getting out to the park with Abigail. It's still RSV season so we're not suppose to be around a lot of people and other kids, but it helps to get out.

Abby is still using her g-tube for the majority of her feedings. We've had some progress in the eating department, but not much. She still won't drink much at all. I can get about an ounce into her by using a medicine dropper over and over again. I don't think we've been able to do this more than once a day. It's frustrating, but I'm sure we'll get there someday. I knew going into this that we were looking at a couple of years. She gets her feedings during the day most of the time, but every now and then we have to use the pump when she goes to bed. It just went off and when I went in to disconnect it, the tubing had already become separated. This happens sometimes and then there are 2 main problems. First, you have no idea when it happened. So you don't know how much of the feeding she actually got. Then it's also all over the place. This time it had just run down the side of the matress and onto a big puddle on the floor. Sometimes it leaks all over the crib and she's soaked too. Then you have to get her up in the middle of the night, wash her off, change her and change the sheets. It's such a mess. Oh well, at least it doesn't happen often.

Well, I'm going to bed now. It's time to turn into a pumpkin. I'll try to keep going with the blogging. with this. We'll see.

The G Tube Is In

First of all,our internet is down at home and I haven't had a chance to call on it yet. I'm using the computer at the hospital right now.

Second, Abby had her surgery Monday afternoon. They had originally scheduled her for 8:30 am, but we knew she could get bumped until either later in the day or a different day altogether if theyhd emergencies that took precedence over her. We all arrived that morning, but they rescheduled her until 1:00. However, they didn't come get her until around 3:30. Joshua did fairly well for being cooped up most of the day. She was back in her room around 5:45 and pretty cranky coming out of the anesthesia. She has 3 small incisions in her abdomen, one of which is in her belly button and another that has the tube in it.

It is now Tuesday around 1 pm and she has been doing well with continuous feeds. They've done one bolus feed (a larger amount over a shorter time) and will do another one at around 3:30. If she tolerates this well without any throwing up then I can take her home. I have to leave in about an hour to pick J up from Kindergarten. Then a friend is picking him up around 4:30. At that point I'll head back down here to get the girl. In the meantime the health care company should be calling to set up a time for them to drop off and demonstrate the pump and supplies.

Next week she should start seeing a speech therapist on at least a weekly basis, maybe more often, to work on her feeding skills. She had various tests down here and we still can't explain why she doesn't want to eat enough on her own. Hopefully the therapist can help get her back on the right track.

In regards to Joshua, yesterday was much better at Kindergarten, but he still says it's boring. But healso says he had a great day. Depends on which mood he's in at the particular time you talk to him about it. Hopefully we can get life back to a little bit more normal for him soon.

And the saga continues

It's been a tense week of watching and logging Abby's intake and outtake. Yesterday morning Mark and I headed down to PCMC in Salt Lake with Abby a little before 6:30 to admit her. She had only taken in around 7 1/2 oz during the previous 24 hrs and her urine output was about half of the minimum they want to see over the last 12 hours.
Of course, it was also Joshua's first day of Kindergarten, so I had to take him over to a neighbor's house so she could take him to school. Her camera was busted and when we picked him up I got a few shots. I'm not sure how they'll turn out since my camera has been acting up and is now dead too. I think someone probably dropped it. Joshua had a so-so day. Hopefully he'll have better days in the weeks to come.
So, Abby is on an i.v. and has a nasal feeding (ng) tube in. She's had some tests and has another upper GI sometime today to try and determine how bad her reflux is. No one knows yet why she won't eat. It's also a 3 day weekend, so all of the GI doctors are gone until Tuesday. I'm not comfortable with her coming home with the ng tube. She is notorious for pulling them out and she's just gotten too big and strong for me to put it back in, especially on a daily basis. Also, if she were to pull it partially out during a feeding without my knowledge, then she could aspirate into her lungs quite easily. The plan will be for a g tube surgically inserted into her stomach with a port on her abdomen. However, it could take at least a week to get tht arranged. So in the meantime, here we are. She would then most likely have the tube in for around 2 years until she can completely take in everything she needs by mouth.

9/5 months old

On Monday Abby will officially be 9 months old, but her corrected age is now 5 months old. She is acting like a typical 5 month old. She likes to roll on to her tummy anytime she's on her back. Unfortunately, she hasn't gotten the hang of rolling back yet. She also likes to stand when you hold her and is getting better and better at playing in her saucer. She started on cereal of couple of weeks back. She still isn't real big on it yet and she's still having trouble with eating over all. My birthday was Thursday and she started eating better on that day. She is still eating better, but not up to full feedings yet. We weighed her yesterday at Joshua's 5 yr. check up and she had put on weight, so I'm happy about that. She will have her 9 mos. check up on Tuesday and we will see what the Dr. has to say.

Joshua's birthday was a week before mine and he's enjoying being 5. The Saturday before we had his party at the local fun center where the kids could play on all types of inflatables, plus there is this other enclosed area for younger kids that has all kinds of ramps to climb up, slides, a rope swing, etc... He had a Superman theme, but wanted a number of the Planet Heroes characters from Fisher Price. They're pretty cool. He's learned almost all of the planet names already. Then on his actual b-day we all 4 went out to breakfast at Mimis. This was a first for Miss Abby, and she did very well. Then Joshua and Daddy went to a local bowling alley that also has an indoor miniature golf. Guess it's glow in the dark, and also has other arcade games. Then on Friday Mommy and Joshua went to the Tree House childrens' museum and Farr's Ice Cream shop up in Ogden.

Here are some photos of Superbaby, Abby's first attempt at eating, sleeping like an angel, and I finally got a good smile on film. Also one of her and her brother. Joshua loves his little sister and is always giving her hugs and kisses.