Life at Home

Sunday May 22:
Eden has been home with us now for just over a week now, it hard to think she is really a month old and not my little newborn. But is guess one advantage of having her be a month old she has slept for 5 hours the last two nights. I forget how sleep deprived you get with a baby, but 5 hours has been like heaven!! We go in tomorrow for a 2nd weight check make sure she is still gaining weight. I don't think she is going to have a problem there she loves to EAT!

Big News for Maelyn she pooped in the potty today!!! First time for pooping YEAH! she has been starting to pee in the potty at least once a day. Hopefully we will be potty trained by her birthday.

Tuesday May 24

Okay blogging at home with the baby home seems to be so much harder than when she was at the hospital.
Eden's doctor appointment went great she weighed in at 9lbs 13 oz. A total weight gain of 9 oz. The dr. said they like babies to gain about 4 to 7 oz a week, so Eden is doing really good. He told me to keep doing whatever I'm doing.

Life At Home

Well everything is going really good. Cole and Maelyn are adjusting to having their little sister home and constantly want to hold Eden. Cole is a great big brother and will just sit and hold and talk to her. Eden had her first doctor appointment. And everything looks really good. She left the hospital weighing 8lb 13 oz and weighed in today at 9lb 4oz so she is gaining weight good. We were just told to watch her close and a few warning signs to looks for but other than that Eden is doing really great. We go back in next week for another weight check.


We have to hold first thing in the morning!

Day 24: Friday May 13

Eden's home!!!!! Friday the 13 is a good day for us! I went down this morning to take Eden some milk, I had called down there earlier and they said it look like we could bring her home tomorrow. When I got down there the nurse said they had decided that they could discharge Eden today. I wasn't going to complain about that. They were still waiting for surgery to come and pull out her central line, they were really busy and didn't know when they were going to make it up there to do it. So after talking to Todd, we decided that I would just stay down there and bring her home and he would get the other two kids.
So I waited until 2:30 when the surgery nurse practitioner came up to pull it out. They got her all draped in sterile cloths and cleaned up with betadine, then they numbed up the area with lidocane so it wouldn't hurt so bad, I guess the catheter has a small knob on it that the tissue adheres so it kind of hurts when they pull it out. She did cry a little bit but not as much as I thought she would, she is one tuff cookie. After that we just waited around for all the discharge paperwork. At about 4:30 all the paperwork was done Eden had a few final exams and away we went. She has a follow up with the surgeon in 6 weeks and will have a CT of her belly before she goes to see her, to make sure the tumors on her liver haven't come back. Eden was an angel on the way home didn't make a peep all the way home. We got home just a little after 6 and Cole and Maelyn were waiting to see their new sister. Cole thinks she is just so little. Maelyn loves her new little sisterbut we are going to have to watch a little close so she doesn't love her too much. Both grandparents come over to see her and even Bryce made it out to see her. We are so grateful to have her home thank you everyone for all your prayers and love we know that it helped get her home so quickly we are truly blessed.

Day 23: Thurs May 12

Everything is going good. They are thinking Eden could possibly go home as soon as this weekend. They need surgery to pull her central line and to sign off on everything but she is basically ready to come home. And we are ready for her too!!!

Day 21: Tuesday May 10

Eden is officially 3 weeks old, Oh how time flies. They changed Eden's room on us she is now in the bed across from where Cole used to be, a little de ja vu. Talked to the nurse practitioner today Eden is doing really well they are going to take her off her TPN (iv fluid they have been feeding her) and going to put her on something a little less nutritious because she is eating better, and if she does well on that they can take her off that as well. The surgeon is out until Friday so until then we aren't expecting any updates. Eden has become quite the little smiler (if only we could catch it on film) she will be really fun when we get her home with the kids.

Day 20: Monday May 9

They decided to take out Eden's final drain today. I guess they think the little bit of fluid she was still putting out is a small enough amount that her body can reabsorb it. Still haven't talked to the Dr. about the pathology report we heard the surgeon was going to be out of town until Friday. so we may not get answers for a little bit longer. She is eating better you just have to make sure you burp her real good. So we are slowly getting closer to bringing her home.

Day 19: Sunday May 8

What a good Mother's Day, what more could I ask for than a big hug and a kiss from Cole and Maelyn, and to get to hold my little Eden. Eden is doing really good they took her off her pain medication and are just giving it to her as they think she needs it. They think her pain meds could be making her have less of an appetite and could possibly make her a little nauseous. So with her not being on it so much hopefully she will want to eat a little more and not throw up so much. But she was so cute today Todd made her mad when he tried to wake her up to eat by unwrapping her ( she did not like that at all). But we really heard her screaming after her bottle, she was mad mad mad!!!! Finally settled down after we changed her bum ( she has a sore little bum) and wrapped her up tight.

Day 18: Sat May 7

Eden is doing super good today. They have taken her off her phentonyl drip (pain medication) so instead of her getting a continuous dose of pain medicaiton. They are just giving her a dose of pain meds every 3 hours. So this is good they are slowly getting her off. She still isn't eating as much as they would like her to but I'm sure she'll get there. Last night she threw up all she ate twice for the nurse and once today for the nurse, but she is a hard burper, you don't really want to pound on her back too much, or lay her on her tummy so she get those air bubbles in her stomach and throws everything up. But other than that she looks great and has sure become a smiler. She had some new visitors today. Lance Scott and Tana all came to see and hold her.

Day 17: Friday May 6

Eden is breathing all on her own. No more oxygen!!! This means her face is finally free of all tubes and attachments. She looks so good it hard to believe that she's not ready to be home. But we will get there. Well when the Dr.'s told Eden she could eat whenever and whatever she took that literally. And she decided she wanted to eat every hour a little bit and than go back to sleep, so after a few hours of this the nurse drew the line and made her wait her 3 hours (Eden didn't love this)but they should have her on a nice schedule for us. We gave her her first bath tonight and she was screaming the whole time, I think more from the fact that she was starving more than anything else. But not too much happening today, drain is still putting out a little fluid,there wont be any decision made on pulling it until the surgeon gets back on Monday. Lea and Ross get to come and visit and hold hold.

Day 16: Thursday May 5

They took off all of Eden's eating restrictions today she can now eat whatever and whenever she wants. She is eating about 25-35ml which is pretty good and she seems to be keeping it down. She is eating about half of what she needs to and getting the rest through her IV still. So in order for her to come home she will have to double the amount. But for her first day of actually eating she is doing great.
They removed Eden's staples too and just put steri strips over her incision. The nurse said she did really well and that it looked really good. She is still on her pain drip at .5, and in the next few days they should be taking her off that and giving her just timed doses of medication. They also told us that tomorrow they will be trying her without her oxygen. Her oxygen saturation has been in the high 90's all day so they think she should be ok without it. And lastly we got the pathology report back finally, only to find out the the findings came back inconclusive. What does that mean? Well basically the surgeon had told us that Eden had lymph malformations (tumor) on her liver, and she was pretty positive. And the pathologist findings came back as a blood clot with air bubbles in it. So anyway they are going to have the surgeon talk to the pathologist and see what they can come up with. The nurse practitioner said they see really strange things here and sometimes they have answers and sometimes they don't. So we just wait and see, we will take strange with no explanation if it means she doesn't have tumors that will probably grow back. Sometimes answers to prayers come in strange ways.

Day 15: Wed May 4

Every night we go down there seems to be some change going on Eden is now in a crib and wearing clothes. So she is no longer in a heated bed and they aren't monitoring her body temperature anymore. She is still on a little bit of oxygen but they will see tomorrow if she can keep her stats up on room air. They pulled her picc line out of her head tonight so the only IV lines she has left is her central line (one in her chest) and 1 in her foot. They had told us yesterday they might pull her staples out of her incision but they are still there so maybe tomorrow. She still has her drain in, it is still putting out fluid, and now that she is eating they want to really monitor the output. I guess when we ingest fats our lymphatic system can leak lymph fluid where Eden's tumors are lymph tumors they just want to make sure that they aren't leaking out anymore fluid. I wish i could explain that better but it a little confusing to me. Anyway she is eating really good, Todd feed her her bottle tonight they have moved her up from 9cc to 19cc so she is getting a little more still not even an ounce yet. Pathology report still isn't back so hopefully anytime now told us 5 to 7 day and today was day 7 they are defiantly taking their time. Cole asked today, when do we get to bring our new baby sister home?? I think we are all ready to get her home. Hopefully soon!!!
























Trent and Annica come and Visit

Day 14: Tuesday May 3

Eden is offically 2 weeks old, and we had a big big day today! First off eden's little tube that was suctioning out her belly was finally removed. So she has no more tubes in her mouth to gag on yeah!!. Next surgery gave her the ok to start eating, which means that he bowels are working again after surgery. And lastley they removed her arterial line out of her hand. And the biggest news of all...... We got to finally hold her!!!!!! What an awsome experience, was afraid at first i was going to hurt her with her big incision, but she just snuggled right in. I got to feed her her first bottle, they are only giving her a taste for now (9cc) to see how her stomach handles it, and if she does good they will move up the amount tomorrow. Todd and I stayed up there most of the day just holding her, and than went back up that night after Cole's soccer game. We just couldn't get enough of her!!

Day 13: Monday May 2

NO More Ventilator!!!!! Yeah!! They pulled Eden's ventilator at 1:00am and she is doing really good she is still on a little bit of oxygen, but probably wont be on that for too long. She was a little uncomfortable tonight i can only imagine that her throat is sore from having that tube down it, but she startles really easy and of course she kicks her feet out and it just kills her tummy. On top of that, in just the time I was there she had the hiccups and sneezed 3 times. And trust me I know how bad those things hurt just after you've had surgery!!! Poor thing. I feel so bad she is hurting so much. But looking on the bright side, we are one step closer to bringing her home with the ventilator gone. She has officially passed the number of days Cole spent in the NICU, so hopefully we will get her home soon! Eden had lots of visitors tonight Gma Bev and Gpa Lex, Gma Gay,Great Gma Stewart, and Brett and Jill so she was a busy girl.

Day 12: Sunday May 1

Eden had a MRI of her brain today. They are checking to make sure there isn't anything going on because of the lack of oxygen at birth. The results were good which they were expecting because of the way Eden has been acting with her movements and reflexes. They were able to remove her drain from the right side because it was no longer putting out any fluid, this is the drain from the tumor on the outside of her liver the one they were able to cut out and cauterize. The other drain is still putting out fluid but the input is still decreasing so the surgeon isn't concerned about it. They also pulled out her pee catheter, and she has even had two dirty diapers (which means her bowls are starting to work after the shock of surgery). So all in all she is doing really good. They are hoping to get her off the ventilator soon, she is on the lowest settings and all of her blood gases have come back good. They also removed her dressing over her surgery wound, it was alot larger than we had expected, we didn't know they were going to cut her vertically, but with having to get up to her liver I'm sure they had cut a little higher. But the wound looked good no signs of infection. It looks like she might have a pretty good scar, the nurse did tell us that babies wounds heal surprisingly well. Lets cross our fingers.

Day 11: Saturday April 30

They have taken Eden off her high frequency ventilator and put on a conventional ventilator. A high frequency ventilator makes her breath really fast and shallow where as a conventional ventilator actually mimics normal breathing. They had to change ventilators because they are planning on taking her down to MRI tomorrow and the high frequency moves her little body so much they can't use it during the MRI. They also reduced her pain drip again down to 1mg per kilo and she seems to be tolerating it pretty well they are having to bolus her with a different pain medication if they think she is in pain.
Went down to see her tonight, see looks really good! She was awake and looking at us, and moving her hands and legs around( this is really good it will help her get rid of some of her swelling). She is doing good on the new ventilator, and her pain medication change. Every thing else is still the same, her drains are still getting out fluid(it is decreasing though) and they are still suctioning out her tummy.
Her little feet are always so cold so i got to put some little sockies on, and the nurse got her a bow for her hair.