Pictures

Playing with daddy in her new home!

We were testing out Fiona's "belly device" in the carseat. Her OT made it out of cast material and added padding on the inside and straps to go around her back. It works really well! Thanks Lauren!!

So Close!!

A lot has happened since the last time I posted!! I haven't had much time and still don't so I am just going to give a quick update! We got to TIC on Wednesday and Fiona is doing great! All of the nurses love her just like they did at Children's! And they are all so impressed by what Tom and I already knew how to do. We kept telling everyone that we were going to be out of there in a week and everyone would kind of give us this look like, "yeah right!" Well wouldn't you know that they are planning to have us out of there on Wednesday, which is exactly a week! There is a whole list of stuff that Tom and I have to get checked off that they have seen us do and that we are comfortable doing such as changing her trach, changing the trach ties, suctioning, etc. We were pretty much comfortable with all of that stuff while she was still at Children's. We also had to get training on all of her home equipment: ventilator, battery, suction machine, feeding pump, pulse ox (measures the oxygen in her blood and heart rate). Anyway... tonight will be our first night staying at TIC with her. We didn't know that someone has to be AWAKE with her 24/7! So one of us will have to stay up all night with her or take shifts while the other one sleeps. At home we will actually have a nurse there over night so we can both sleep. We are so excited to be going home soon and can't wait to get there. She has been through so much in these past 3 months and still has a long road ahead of her but she is a tough little girl! Hopefully we get to have her at home for about a year before we have to take her back to Children's for her surgery. Thank you to everyone for your thoughts and prayers and gifts. Don't stop the prayers, we will still be needing them! Hope to see most of you soon :)

She's getting so big!

I think this picture it so funny! She's thinking "Where did that big fuzzy thing that was on your chin go Daddy?!"

Of course...

So of course after I had written how good Fiona was doing something happened. Nothing major and she is still doing good. We noticed that Fiona had been getting fussy a lot more than normal and that she was sleeping a lot. We thought that something was wrong, but we just weren't sure what. For about a week she had been having a lot of trouble pooping. Almost every time she went she got VERY mad and her heart rate and oxygen would drop and then once she went she would be fine. It would just take her a little bit to recover from that and she would breathe really hard... and we just thought it was because she was having so much trouble going. So we asked if there was anything they could give her to help. They said that since she was going there was nothing they could do about it. It was just because she had to work so hard because she doesn't really have abdominal muscles where they should be to help her push so it takes a lot out of her. So we just said ok and dealt with it because there was nothing else for us to do. Most of the time these little episodes would last 1/2 an hour to and hour. Well Tuesday night she was having one of these episodes but it lasted 4 hours and we just could not get her to calm down. Usually her oxygen is around 30-40% and that night we had it up to 70% and her oxygen level just kept dropping. So finally the nurse called the respiratory therapist and had him come take a look at her. Anyway, it turns out that the problem was the ventilator. I won't go into the specifics, but it wasn't giving her the pressure support that she needed when she was taking breaths on her own. So the poor thing was go tired and mad because she was working so hard to breathe. So they put her back on the hospital ventilator and we could tell immediately that there was a difference. She was so much happier and her breathing was back to normal. They ordered us a new home vent which is an older version. The one we had was the newest one and most of them hadn't even seen it yet! They are planning to get her onto the new one on Monday. Usually a baby has to be on the vent for a week before they can go to TIC, but since she has been on all the same settings and is stable they are pretty sure that we will be able to go there on Wednesday! YAY!
Tom and I are at home right now. We are trying to get everything ready for her to come home because once we go to TIC we won't be coming home til we bring her home! Tom put up a railing upstairs and a handrail going up the steps. Toni, Boo, and I cleaned and rearranged the bedroom and living room. We had to set her crib up in our bedroom because she will be sleeping in there for awhile. Probably at least until she is off the ventilator. We had to make sure there was enough room for everything and we have a pretty small bedroom! I guess the home care company that we are getting all of her equipment from has to come inspect our house and make sure there is adequate room for everything and that all of the electrical stuff is ok since we have so much stuff that will need plugged in. We had a lot to get done and still didn't get it all done so Toni and Boo and my mom and dad are going to come do the rest. I don't know what we would do without them!

Are we done yet?!

So I haven't written anything about us leaving because we still aren't sure of the plan, but I guess I will share what is going on. We have known for awhile now that we were going to TIC, we just didn't know when. A few things had to happen first -stable with feedings and stable on the vent mostly. Well now that those things have happened we just want to get out of here! First they told us that we were going last week. Well someone got something mixed up and obviously we didn't go last week. So then they told us "sometime" this week. Well it is Monday and we still don't have a day. Apparently TIC only takes so many babies on ventilators and one of them is supposed to be leaving there this week and Fiona will be taking that spot. I guess they just don't know when that will be. It is very frustrating though just sitting around not knowing when we are leaving. The nurse just told us that they even said in rounds this morning that they are not really doing anything new for her, she is stable and ready to go and now we just have to wait for TIC to be ready I guess.

She is doing better with the bottle now. She is taking about 20 cc on average at each feeding. She gulps it down fast for the first few minutes and then gets too tired and stops! Or gets sloppy and it drips out the sides of her mouth. She graduated from the Preemie diapers to size 1 today!! Partly because she kept peeing out of the P's and partly because her little legs are getting so chubby that the diapers were getting tight on them. Oh and I keep forgetting to write her weight! She is up to 6 lbs. 15 oz!! I can't believe she weighs almost 7 lbs already!

I should have gotten her whole body because she had a cute little Valentine's Day outfit on! The shirt had little heart pockets and the pants had pink and read hearts on them. So cute!

Busy Week!

Fiona had a few tests done this week. Monday she had an echocardiogram to check her heart. She does have 2 VSD's. "A ventricular septal defect (VSD) is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart. It’s the most common congenital heart defect in the newborn; it’s less common in older children and adults because some VSDs close on their own." I guess one hole is very small and one is moderate size but neither of them are causing a problem at this point. There is still a chance that they could close on their own. If they don't and they are still not causing a problem they will be left alone. If they start to cause a problem then they will have to be fixed at some point.

She also had a head ultrasound on Monday. They found a Grade 1 bleed, but apparently this isn't causing any problems either. Here is a little explanation of that. "...These blood vessels are especially fragile in premature infants. Babies born more than eight weeks early are most likely to have this bleeding. Some fragile blood vessels surround the ventricles of the brain, cavities in the brain though which cerebrospinal fluid (CSF) flows. The blood vessels are underdeveloped in the very young infant. They start getting stronger after thirty-two weeks of gestation. These blood vessels are very sensitive to changes in blood flow. If the blood flow changes, the blood vessels break down and start bleeding. If the bleeding is slight, the blood remains around the blood vessels. If the bleeding gets worse, the blood breaks into the ventricles. In the worst cases of bleeding, the blood may leak into the brain tissue. The hemorrhages are graded from 1 to 4 according to the severity of the bleeding..." Our nurse practitioner also said that sometimes they can over analyze things so it might not even be an issue at all.

On Tuesday she had a VCUG (Voiding Cysto-Urethrogram) to check on her kidney reflux. I'm not sure that I ever mentioned she had that. What pretty much happens is that her urine backs up from her bladder into her ureters and back into her kidneys. The doctors said this could have something to do with her O because it happens when the ureters don't grow into the bladder at the right angle. And since pretty much nothing is in the right spot it makes sense. They also use grades for this, I think from 1-6. She has grade 3 in one kidney and grade 4 in the other. It could possibly get better on its own. If it doesn't she will most likely have to get surgery to fix it at some point. She will probably have to be on Amoxicillin for the rest of her life.

They started her on another medicine today, too, called Actigall. It is to prevent gall stones. I'm not exactly sure how all of this goes together, but her billirubin level is a little high and has been going up for the past few weeks which I guess can cause gall stones? So this is preventative. She also had her Broviac taken out today, yay! She is doing good with her feeding. She has been taking on average about 10 cc by mouth each feeding and then gets the rest in her NG tube. She did awesome the other day and took 44! Tom and I are now aloud to feed her. She does have a 15 minute time limit because she has to work so hard anything beyond that would be making her use up too many calories.

The surgeons looked at her O today and said that everything looks good. We are hoping the doctors can make us some sort of support for her to use in the car seat when we are ready to go home! Which will hopefully be soon so keep your fingers crossed! :)

Big Eyes!

This is the video from the night that we sat her up. Tom and the nurse were changing her trach ties. I couldn't put it on from the hospital for some reason!

SORRY!

Sorry again for the lack of blogging! We have had a pretty busy week!

Wednesday they started Fiona on "bolus" feeds, meaning that instead of doing it continuous for 24 hrs a day, they do it in a certain amount of time. Most babies take about 1/2 an hour to drink their bottle and eat about every 3 hours. There is no way that they could go right from continuous to 1/2 an hour because her little belly wouldn't be able to hold that much, so they gradually decrease the time it takes to give her the milk. She is getting 18 cc/hr (which they increased from 17 to give her more calories), so if she was eating every 3 hrs she would be getting 54 cc. They decided to start out giving it to her over 2 hrs. They do her feedings at 3,6,9, and 12. So they would feed her from 3-5 then give her an hour break, then feed her from 6-8 and give an hour break, etc. She did good with the first one, but then threw up twice during the second time so they had to go back to doing it continuous. She was on continuous all of Thursday and then back to bolus at 2 1/2 hrs on Friday. She did good with the 2 1/2 hrs, so Saturday they went down to 2 hrs, and today down to 1 1/2 hrs (with the goal being 1/2 an hr). So she is getting 54 cc at a feeding, which is a little less than 2 oz. I know it's kind of confusing!

Wednesday they also starting trying to give her a bottle!! The first time that the Occupational Therapist came up Fiona sucked a little out of the bottle but then just spit it back out. The secong time that day she actually got about 1 cc down! Thurday and Friday she wanted nothing to do with the bottle. On Friday she did suck about 2 cc out of the bottle, but then just left it sit in her mouth and wouldn't swallow it so we had to suction it back out! She does pretty good with the sucking, it's the swallowing that she doesn't quite get yet! It might be a long process.

On Thursday they put her on the home ventilator. Pretty much the same thing she was on, it's just the one we will be bringing home with us and not as expensive as the one in the hospital haha! Apparently the one in the hospital costs about $50,000 and the one we are bringing home costs $10,000. Still a pretty expensive piece of equipment to have in your house! They had to do a little adjusting a few times just to get her at the right settings because even though it is doing the same thing, it can be a little different. They told us not to be surprised if she didn't like it and they had to put her back on the hospital one and try again, but she did really well with it and is still on it!

We are going to have so much equipment in our house! Not only will we have the ventilator (and another one for back up and transport), but we will also have an oxygen machine, oxygen tanks (for transport), and a suction machine. And we will also have extras of all the tubing and all of her trach supplies. Zues (our dog) is probably going to hate us when we come home!

This was her second attempt with the bottle. Part of the problem is that she is always sleeping when OT comes to work with her!

Thank you!

We just want to thank everyone for the baby shower gifts and other gifts that have been given to us over the past couple months. I am in the process of doing the Thank You notes, it is just hard to do in between everything else! So we just want everyone to know that we are very thankful and appreciate everything!

Getting closer to home!

Well as most of you saw from Facebook, I changed the whole trach yesterday (with the assistance of our teacher!) But today Tom and I did it ourselves while Chuck watched and gave a few suggestions! Tom was the "do-er" and I was the "helper". I'm sure it will get a little easier every day, but I have never been so nervous in my life! And my face gets sooo red when I am nervous!

The home ventilator came today! It got all checked out and will be hooked up tomorrow. It is actually the one that we will be taking home with us. Chuck got us all excited saying that TIC requires that a child be on the ventilator for 7 days without and changes so Fiona could possibly be out of the hospital by the end of next week! Well as soon as he got done telling us this one of the doctors came in and said there was some changing of the plans. They want OT (and maybe the speech therapist?) to come do their assessment to see if she is ready to bottle feed and get her doing that before they consider sending us to TIC. Hopefully she catches on REALLY FAST and we can get out of here! They previously told us that they don't send babies home with feeding tubes so she would need to be bottle feeding before we could go home. But today it sounded like if she didn't get the whole bottle feeding thing that they would have to consider sending her home with the feeding tube. I don't know if they just like to change their minds a lot or if Tom and I misunderstood?! Usually if a baby isn't able to bottle feed, they put in a G-tube, which goes directly into the stomach. But because her stomach is in the O, she is not a canidate for a G-tube. So she really just needs to take the bottle and like it, haha!

She is doing pretty good with getting in and out of bed. Most of the nurses are now comfortable with Tom and I getting her in and out by ourselves. She is doing really good with tolerating being on her back. She can't be there for huge amounts of time, but she is definitely making progress. We would like to get that head reshaped, haha!

Look at those eyes!

We had to sit her up to change her trach ties and she looked so shocked/scared! She did such a good job though, everyone is impressed by how good she does during the whole process!