New responsibilities

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 usually start at 8:30 or whenever we can get Benson down. We start with the multi-vitamin, lasix, something else, and aspirin in the NG tube. Avery will laugh when she reads this in the morning, because I just do what I am told and really don't know the names of the stuff. After the meds, we get all of the fortified milk prepared for the entire night and set up the milk pump. I am sure there is a great name for the milk pump, what it is I am not aware. Then the feeds begin for the entire night. This can take anywhere from 15 to 30 minutes, again depending on who is doing it. We then will always prepare the anti-biotic after we get all the meds and feeds going, because setting up the anti-biotic pumps at 1:30 am is not fun. I am getting anxiety just thinking about the fact that tonight is my night to get up and do the meds which means I will be up from 1:30 to 2:30 administering and then again at 4:00 to add more milk to her pump. I sweat the entire time I administer the meds!

There is probably much more that goes on during the day that I don't know about and I will let Avery fill in the blanks at another time. Avery will attest that Bela absolutely loves her daddy. She will fuss with almost anyone but when daddy is holding her. When I am home I can hold her for hours at a time and I pretty much tear up every time I sit and stare in her eyes. She is so amazing and we are so lucky to have her.

She is still not gaining weight and that really worries us. The longest she can wait for the next surgery is four months from now and at the pace she is on, she will not be as big and strong as the doctors would like. I know Avery worries about Bela performing to the doctor's expectations and so far she is under performing. I don't let that bother me because Bela does fit within any medical senario or growth chart. I know that if the plan is for Bela to make it through the second surgery, it doesn't matter if she doesn't gain another ounce, because she will make it.

Sometimes it seems that life is pretty normal but it is because we have an incredible support system and there is no question we have been carried through this. The other day, we accidentally pull out the NG tube that runs through her nose to her stomach. We were stressed about how we would get it back in, and thought that we should call someone we know who is a nurse. The night passed so fast and before we knew it, it was time to start her feeds. It was too late to call someone so Avery said that I had to do it. We were shown one time how to insert it through her nose and then check for the placement in her stomach in the hospital but never expected to have to do it on our own. I was so nervous I thought I was going to throw up but knew that we had to get it in to start her feeds. I said a silent prayer and asked that I would be calm and it would go down the right tube and make it to her stomach. It was incredible how at that moment I was overcome with total silence and my hand stopped shaking so I could put it right in. When I thought about it later that night, I recalled feeling the prayers of everyone that prays for Bela and our family at that exact moment. Our burdens have been made light through all of this. Thank you for your constant prayers in our behalf. I spoke with someone the other day that I have done business with and he mentioned that he thought Bela was in the clear and wondered what the future looked like for her. I reaffirmed to him that Bela is definately not in the clear and that we have a major surgery to undergo in a few months. I only say this because Bela needs every prayer and even if you don't pray for yourself, we ask that you pray for Bela. I am amazed at how many hearts she has softened and how many pray in her behalf.

We thank you all with all our hearts.

Home!

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!

Growing!

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 admitted! That's seems like a lot to me until I realize that Benson was 7.12 when he was born. But we are making good progress and thats all that matters..

The Game is over, and we lost!

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.

Finally going home, we hope!

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 very often and to hear that they are constantly praying for Bela and our family. We feel your prayers and we see the results in Bela's progress. She reminds us every day that God Lives and he continues to perform miracles.

Tomorrow?

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's been quite a nice change. She sleeps for the most part all night long. So this time we'll be coming home with a couple new additions on her...her NG tube down her nose, and her broviac in her leg that we will be adminitering her antibiotic through. Hopefully both things will be gone in about 2-3 months. We're just sooo grateful that she is healing again so well and seems to be recovering from another surgery with no complications! We sure hope to not see this place again for another 4 months or so..

She's back!

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 talked for a long time and then she fell peacefully asleep in my arms for a couple hours. What a difference a day makes. Yesterday they were still a little worried about her, but she pulled through fighting like she always does. She got her breathing tube out late last night and since then has come off of all of her meds. She's just getting milk and a TPN drip. She still has some chest drainage so her chest tube is still in, but it should come out soon. She seems like a different baby today. She's so much more content and happy. Her infection was affecting her so much. She seems to be so much more comfortable now. I really believe she will be stronger now. Hopefully that was why she wasn't gaining too much weight and now she'll be able to pick up the pace a little and get back on track to where we need her to be for the next surgery. I'm amazed at how these tiny babies can be so strong. I told her all weekend long to keep fighting to get back in my arms, and she did.
So now we work towards getting back home. We have to make sure she's going to tolerate eating again and figure out the best combination of nursing and NG tube(nose tube) feeding to get her growing. I have to be trained on how to give her meds through her line for the next 6 weeks. Once we've got those two things down and Bela continues to be progressing, we're outta here! There was some talk about possibly this weekend, but around here you really have to try hard not to get your hopes up. We'll see...
I read Gracies blog tonight and it was very touching. We too have learned to make the most of each day, and never take advantage of one moment becuase life is so precious. I can't believe what a blessing Bela has been to us. With all her challenges have come great blessings. It is hard to watch her suffer, but I have to remind myself that this is all happening because of the incredible spirit my daughter has. She knew what she was doing when she chose this life, and she understood that it was necessary for whatever reason. We will come to understand those reasons as her life unfolds. Thank you for teaching your mommy sweet Bela..

I wanted to write a few words to those heart moms that i've been in contact with throughout all this with our little ones... We pray for you all and your babies night and day. We feel like we're going through this with you and we feel your pain through the rough times and cheer along with you through the good times. You are all inspiring us and teaching us as we go through this toghether. Thank you for your strength and faith. We hope and pray that we'll all soon be home with our healthy, thriving babies!!

Today

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 said that he thinks we'll notice a big change in her, she'll feel better, eat better, and grow better. That is what I will continue to hope and pray for.
She isn't doing as well as they'd hoped she'd be doing however. The procedure this morning took about 3 hours to get the PICC line in her. Her veins are so scarred from being poked so many times that the first vein they tried didn't work. They had to start over and finally got one in her leg. She's been through so much. Her blood pressures last night were dropping too low so they've upped the meds she was already getting and added more meds to help bring them up. She's back on just as many meds as she was after the last surgery. She's also having some irregular heart beats, so they're watching that very closley. She also hasn't been peeing very much so she's very puffy and swollen. they had to up those meds to to get her peeing more. They don't want to push her too quickly so they're going to take things very slow. She may not get off the breathing tube for another day or two. They havn't given her any food yet because she's not showing enough improvements and they don't want to over work her.
I hope that this is just her body trying to heal from the infection and recover from the surgery, and that she is just needing to do that very slowly, but that we will see improvements soon. the dr. has been in her a lot today and it always worries me. Its much better when you don't see too much of them because that means there's nothing to worry about.
I am reassured by the testimony that I have. I know that I have a loving Heavenly Father in charge of everything we go through. That will continue to get us through this. Thank you for your love and prayers. Hopefully I'll have some great news to post next time!
I also wanted to just note that i changed the setting to allow anyone to leave a comment that would like to, not just those that have a google ID. We love your comments, they let us know that people care and you'll never know how much that means to us during all this..

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 sleeping peacefully most of the afternoon. I just don't want her feeling any pain. That is the hardest part.
They are still very concerned about her size and she is not absorbing all of the nutrition she is getting. When she is well, we have to figure out how to get her absorbing and digesting so she will grow and be better able to fight off infections. The dr. said she was in a very weakened condition and so the infection was able to just take over. I can't wait til the day when she's a 10 pounder!

Set back

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 breathing tube and will stay on it for a little while. It could be just a day or up to a few weeks depending on if they can get all the infection out and it hasn't spread. I am praying so hard that they can get all the infection out and she can come off the ventilator becuase she will not be able to eat until she does. They are also putting a central line back into her neck to give us access to give her antibiotics for up to 6 weeks.
Yesterday when we got readmitted they tried for about 45 minutes to get an IV in her. Since we had just been here all last week and they had to poke her 4 different times to get the first IV in, they had very few veins left that they could put one in. They tried the few veins that had not been poked already with no luck. I had to leave the room because I could not take the screaming anymore. I finally came back after about a half an hour (plenty of time to get an IV in) and saw my baby in the worst condition I have seen her in since she was born. I honestly did not know if she was alive or not. There were about 6 nurses and doctors around her bed, she was completley void of all color and limp. I cannot get the image out of my head. I broke down and couldn't pull myself together for awhile. I felt like she had just been tortured until her breaking point. The ICU doctor finally came in and said 'enough, she can't take anymore.' The only thing that gets me through her being back in surgery right now is knowing that at least she is not feeling anything. I can't even begin to explain what this is doing to my heart. It is so hard. I know it is all necessary for her, but sometimes I just want to grab her and take her away from all the pain. I would gladly take her pain for her. She is so helpless and innocent and all this dosn't seem right sometimes. I just have to marvel at her strength and strong will. The nurse practitioner said that it is so good that Bela is such a fiesty little fighter. She lets everyone know when she is upset. She said she will need that type of personality to keep getting through all this. It is truly amazing what these tiny little babies can fight through.
She should be about a half hour away from getting back. I am excited to have her back, but nervous to see her back the way she was a month ago after her surgery. It is hard to be set back, especially when she was doing so well. This time her recovery should be quicker, but we will be here for at least 2 weeks, possibly up to 6 weeks.
I'll post when we know more.. Thanks for your concern for our sweet girl. She is so sweet, she really deserves it all.
I will post again when she is back and we know more about how the operation went.

Back and Forth, Up and Down!

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 desirable weekend getaways than St. Joes, maybe St. Thomas? So Bela and Avery will spend the next few nights under constant observation. I will leave all of the technical medical jargon to Avery because she is the family medical specialist. So the roller coaster goes on. I know that we are so blessed with great family, friends, etc, but this is no fun!

Back in the hospital

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 took it, and so they were a bit concerned, but they have been doing one every 6 hours and they are looking better now. Her xray did show lots of gas in her tummy, so they're thinking it might just be that making her upset. Her lab work showed no virus or infection...another great thing. They're starting to just use the word colicky which I hate because it dosn't explain or answer anything. I've always hated that because I like to know exactly what is wrong. Anyway, they want to keep us here through the week or so just to keep a close eye on her and try and figure out whats making her so uncomfortable. She got a big girl crib this time, but prefers to be in the bouncy seat. The nurse brought it in for her a little while ago and she's been sooo much more peaceful since then.

We hope to be back home soon. Hopefully they'll continue to find nothing really wrong with her. We just wanted to be safe, we don't take any chances with her. It's hard to see her all hooked back up to wires and machines and poked with needles again, but I guess I better start getting used to it...
Other than this little incident, Bela has been doing really well. Her only real concern remains gaining weight. She finally hit 7 lbs today. Here's some pictures of her the last few days..




And then there's Benson.. sorry if this is offensive material to anyone...but i just think it's funny. We're attempting to potty train so he had no diaper on. He was oblivious that half of his 'bum bum' as he calls it was hanging out. He's a character.


A quick update on baby Gracie that I wrote about in my last post... she is an absolute miracle and has come off the ECMO machine and her heart is still beating away!! It's another example of what the power of the priesthood and prayer can do. They've never seen a baby in such fragile condition come off the machine not only with their heart beating but seemingly improving every day. Keep on fighting Gracie girl!!