Bela Girl

Avery has mentioned all week that she needs to post but she hasn't had time to eat or sleep, let alone post. We love having Bela home, but this time it has brought on an unknown world of worry and responsibilities. We have to administer Bela's anti-biotic three times a day and it usually takes 40-50 minutes depending on who is the administer:) We were told by one of our home health nurses the other day, "the doctors must have a lot of confidence in you guys, because in 17 years of nursing, I have never seen a family entrusted to administer the anti-biotics at home." We didn't completely understand the severity of our responsibilites until the nurse put it into perspective. Usually babies stay in the hospital the entire time they are on their antibiotics and for us that would have meant another six weeks. I would go to medical school tomorrow, if it meant we could have our Bela home with us. So that you understand a glimpse of the routine, at night, we usual...

I knew I'd have to do this...I should've just waited utnil the doctors came around to make a post. She gained enough last night to keep her on the calories she's on right now and not try and go up anymore. So we are outta here!

Bela had another good night. We added more calories to her continuous feed last night and she tolerated it very well. The surgeon came in last night and looked at her broviac site and said it looked just fine to him. Yeah! So why are we still here? :) just kidding.. they're just being cautious and making sure everything is in perfect order for us to go home and I am grateful for that. We'll probably be here one more night to go up one more time on calories and make sure she does okay with it. Then we'll be up to where she needs to be on calories and we can get home. Drs. havn't rounded yet this morning, so I'm probably going to be posting a completley differet update in a few hours considering how things usually go around here! We'll see.. She's really starting to fill out and get some chub on her. She's got a rounder face and the begginings of some rolls on her little legs. :) She's up to 7 lbs 6 ounces from 6 lbs 11 ounces when we were...

We had all our stuff packed up and ready to go home when the doctors finally made it to our room. They saw some redness around the broviac (the line used to administer the meds) site and wanted to keep an eye on the increase/decrease in redness until at least tomorrow. On top of that, she has thrown up twice and now they are saying that we most likely won't go home until Monday. The moral to the story is that we are no good at the waiting game and we should never expect to be going home TODAY! Today usually ends up being tomorrow or the next. Sorry if this sounds like we are complaining, we are, but we completely understand that Bela needs to be ready before we can go home.

Bela wasn't able to go home yesterday so today we play the discharge waiting game. We have to wait for the doctors to make their rounds to see if they will let us go home. We are excited be back together and get Bela in a less stressful and more comfortable environment. Grandma Jodi spent the night with Bela last night so Avery could get a good nights rest before she is back to sleepless nights. Last night they gave her zantac and she had a much better night and did not have any vomiting eposodes. It is weird to think that Bela is 7 weeks old and has spent 5 weeks here in the hospital. We constantly tell the staff, "we know that this is your job and we appreciate all you do, but we don't like being here." We have been here less than we had prepared for but nonetheless exhausting. Once again, we hope to not be back here for another 3 or 4 months, but whatever we have to do to keep Bela healthy and progressing. It is so humbling to run into people I don't see...

We are possibly being discharged tomorrow. Every room on the floor right now is full and Bela's problems aren't as big as some others so we're being sent packing. (I took that as a very GOOD compliment when they told me that today.) We were going to stay a little longer to make sure she's doing okay eating and gaining, but they said we'll have to work those out at home. Darn. (that was sarcastic). I'm really ready to get home. I miss spending time with Tanner and Benson...this whole hopstial stuff is extremley draining in so many ways. Bela's infection is completley gone and her incision is already healing up nicely. She seems to be happier and more content. She's been eating pretty good here so I hope that continues. We've started to give her a continuous NG feeding throughout the night and she's doing great keeping it down. She's given enough to keep her full through the night so I don't even have to get up! I have to say it...

Sorry for the couple of days with no posts.. It's pretty late but I wanted to get a quick update up before I try and get some sleep. I'm back at the hospital 24/7 because my little angel is back to nursing!! If you know me at all you know that I'm all about nursing... I absolutley loved nursing Benson and I was devastated that I was told I'd probably never nurse Bela. For Bela to be able to nurse has been one of our best acheivements in my opinion. It so rarely happens with these kids. So anyway, I got to start nursing again a few hours ago and she chugged like she never has before. She was starving from having no food for a few days and she was so ready to get back at it. I was so worried that she's come out of this surgery and for some reason not be able to nurse anymore. But that was not the case! Anyway, miss Bela is back!! I got here today to see a wide eyed, squirmy Bela.. no more sedation! It was sooo wonderful to see her back! We sat together and tal...

I think we were spoiled to have gotten Bela home 3 weeks after she was born and to have had 2 wonderful weeks with her at home. She was doing so well and we were amazed but enjoying every minute of it. There was a piece of me that was wondering if it was all too good to be true and although I never liked to think it, I wondered how long it could last. We were prepared to spend the first few months in the hospital and go through many ups and downs, so I guess this is a little more like what we thought we'd be faced with. With all the challenges that her little body gives her, she's doing remarkably well. She's still doing much better than what was expected of her. It is frusterating that this is something on top of what she already has to go through, but sometimes things are out of our control. What is helping me get through this is that after she came out of surgery the surgeon came and talked to us and he said that he thinks Bela will come out of this stronger. He sa...

I wish I had better pictures to post.. I like the last pictures of her at home much much better. It has been really hard to see Bela like this today...it feels like we've taken huge steps backwards. But oh well..we must go on. She needed this surgery and so now we get on the road to recovery again. Tomorrow morning she will go back into the OR to have a PIC line put in that will give us a more permanent IV access to give her meds long term. Hopefully with the PIC line put in we can take her home to give her the last month of her antibiotics there. After the procedure tomorrow they'll hopefully take out the ventilator if they continue to see no signs on infection elsewhere. The chest tube should come out too. Everything went well during the surgery. It took two hours, she tolerated it well and they felt they got it all cleaned out really well. They had to give her some blood, she was very anemic. She was a little uncomfortable when they brought her back but she's been s...

Bela is back in the operating room undergoing another surgery. The infection site got worse and worse and this morning before they took her in it was about the size of a golf ball which on bela's tiny body looked like a bowling ball. It was getting extremely painful for her.. we now know what has been causing Bela's change in behavior for the last week. The infection had been brewing for about a week causing her to be in very bad pain. The very frusterating part of all this is that when we were here she had a heart monitor patch over it so we couldn't see it. We only noticed it after we got her home and gave her a bath. I saw it and back we came. And it's a very good thing. We hope and pray that they have caught it before the infection had time to spread into other parts of her body or into her blood stream. So right now they have her under anesthesia and have to open her chest back up to drain it completlety and clean it all out. She will be back on the breath...

I make this post without permission from the blogmaster, but I feel that many of you have been looking for an update. Bela was discharged on Wed morning and we were so excited to be back home together. Yesterday we noticed some swelling along Bela's incision so Avery called the doctors. They asked us to immediately come in. So we spent the afternoon at the doctors office running all of the tests on our little Bela. 3 of the 4 doctors that looked at Bela said we needed to admit her to the hospital so they could watch her for a few days. Avery pled with one of the surgeons to let us watch it closely on our own and promised that if it got worse, we would bring her in. They also decided to go off any suplements for a few days and go back to just breast milk. Bela had another appointment this afternoon at the doctor's office and I received the call less than an hour ago that Bela has been readmitted to the hospital at least for the weekend. I can think of a lot of more desir...

Well...we've found ourselves back in the hospital a whole lot sooner than we planned on. Our nice, quiet time at home didn't last too long. On Saturday night Bela started being really fussy and irritable, not like herself. She continued to be that way all night long and into the morning on Saturday. She threw up twice, wasn't eating as good, and was very upset. It seemed her stomach was really upset. Which of course freaked us out given that a lot can go wrong with her gut and bowel. We weren't sure what was going on so we called and they said bring her in. We got here about noon yesterday and had to go into the ER...not a great experience. They ran every test imaginable and eventually they moved us back up to the cardiac ICU. We like it here much better. So far the lab work, xrays, ultrasounds, and other tests have all come back okay. Her heart which was the main concern looks good. Her EKG test (her heart rythms) came back a little different the first time they...