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Tuesday, June 26, 2012

Updates

We are still doing good over here. We are still getting adjusted to life with 2 kids, although I know it is going to be a lot more work once my mom leaves and I am on my own. The mornings are always pretty wild and I don't ever feel like I have stuff caught up on until around 2 in the afternoon. Addie had her clinic appointment today. We had another ECHO but no labs and X-ray. Everything looked good and we get to skip a week going to clinic next week. We do have to go in and make sure Addie's incision is healing appropriately though. Speaking of her incision, we did have to go to the ER on Saturday with Addie. She had a suture working its way out and making a little puss spot at the top of her incision. Luckily nothing was infected, and it was a really quick trip. Two trips to the ER in one week is not my idea of fun. I kept joking that we need a punch card for ER trips where you go so many times and get one free at the end. Hopefully we won't have to go again any time soon.

In other notes, my best friend Allison asked me about how things were now compared to how I thought they'd be before I had Addie. I think the biggest thing I was worried about before I had Addie was if I would be worried/scared about her health every day all day. I'm not scared. Don't get me wrong, her diagnosis is scary, but I don't worry about it like I thought I would. I pray more for her and my family than I ever have. I have also learned to take things one day at a time. I haven't thought too much about the future, and right now that is just fine. This whole thing has strengthened Scott and my relationship more than I ever could have imagined. Scott's positive outlook definitely helped me get through some really rough days in the hospital. I also feel a lot more "normal" than I thought I would being Mom to a heart baby. Addie acts like a normal newborn. She eats, she cries, she sleeps, she smiles heavenly little smiles, she just has a few more doctor's appointments and takes medicine unlike most newborns. She is a precious baby and a true gift from God!



Tuesday, June 19, 2012

Daily life

Not going to lie, it has been crazy around here since we have been home. Between feeding Addie, pumping, thawing out breast milk, then fortifying it, administering medications, charting everything, trying to get Ellie to nap and go to sleep it seems like there is never a break. I am so glad my mom is here to help because I am not sure how I would get it all done. I think it would be hard enough with 2 kids, but with the extra things Addie requires, it makes for a full day never stopping. I am sure we will get the hang of it soon, but it sure seems like a lot right now. Addie had her first follow up this morning with Dr. Ikemba, her cardiologist. It was a full morning, with not much sleep for our house last night. We were at the Medical City ER with Ellie. She dislocated her elbow at about 11 last night and we didnt get home until 1:30. Anyway, we left at 7:30 this morning and didn't get home until noon. Addie got measured, had labs, an x-ray, an EKG, and an ECHO. All of which were normal. Yay! She is 7 lbs 15 oz now, which is awesome! They like these babies to gain 20 grams a day and she is averaging 34. Dr. Ikemba said she looks great, and the only thing they changed was the volume of each feed to 55 ml. Addie is such a good baby and seems content wherever she is....in someone's arms, in her nap nanny, in her bassinet....wherever. All in all, it is great to be home!

Monday, June 18, 2012

Father's Day post a little tardy

How could I not be completely thankful and reflective on this Father's Day?

Mind you I haven't been the focal point of many Father's Days. Only two to be exact. But I can't imagine a Father's Day where I could be happier and more thankful. No new tie or Home Depot gift card needed. All I have is all I need and more than I deserve. And what I have are the incredible gifts of my two daughters and Camille all together at home.
 I can hope there will be many more Father's Days for me but will there be a happier one?  For that I can only pray there will, but until that day this one was pretty special.

Wednesday, June 13, 2012

Rooming in

Addie is 4 weeks old today! I can't believe it. This has definitely been the longest month of my life, but also the most faith filled. We thank God everyday for our Sweet Adeline! We are over 24 hours into the rooming in process and everything is going smoothly so far. We have been charting all of Addie's feeds, giving all of Addie's meds, and mostly just loving on our baby without all the cords and wires. It has been really nice! If things continue to go smoothly, we will be home by tomorrow. On another note, yesterday, an ENT came to look at Addie's voice box because her cry is still very hoarse and her voice hasn't returned all the way yet. We found out that her left vocal cord isn't moving so today they are going to do a swallow study on her. This will show whether or not she is aspirating any of her milk to her lungs, which can cause pneumonia. The temporary paralysis of a vocal cord is pretty common with a baby who has a coarctation of the Aorta and was something Dr. Forbess mentioned as a possibility before surgery. There is a nerve that was damaged during the process to fix her aorta. They told us that the time to regain use of the left vocal cord could be months and they wouldn't say it is paralyzed until at least a year. I will add that some kids that have a paralyzed vocal cord are not bothered and have full use of their voice. You would never know they had a paralyzed cord. Addie just may not be the next Adele. :)

Ellie was so excited to finally get to hold her "Baby Addie!"

Monday, June 11, 2012

Going home?

Not much has been going on around here lately. We like boring when it comes to Addie! This week, we do have exciting news though. We start the "rooming in" process tomorrow. Rooming in consists of being here for two days and administering all of Addie's medications, giving all of Addie's feeds, taking off all her leads so she isn't being monitored, and doing everything ourselves. The nurses and doctors will be here if we need them, but we are basically on our own for 48 hours. This will ensure we know what to do when we get home. They have been training us on everything the past week so Scott and I feel pretty good about caring for our sweet baby. We have a big binder of all things Addie we have to carry around in the diaper bag at all times just in case. It includes the things we need to call our SAFE at home team member for, daily feeding logs, places to put her daily saturation levels and weight, her feeding information, basic information about the anatomy of her heart, information about her medications, and basic daily living information. Scott and I also had to take CPR. All that to say, we will most likely be home by Thursday. Woohoooo!! We are so ready! Thank you all for keeping up with the blog, praying for us, visiting us, sending us messages, bringing us food, etc. We feel so blessed. God is good!!!!!

Thursday, June 7, 2012

Joy

The love between a mother and her child is a bond of the strongest kind. My mom wrote this comment on a post awhile back. I really struggled with feeling joy about having a child with a serious heart defect before Addie was born. I wondered if I would be able to let myself love something I didn't know if I would be able to keep. I  was really afraid of the struggle for Addie! Any parent can understand that. Once Addie was born though, I had no problems feeling joy or love over my newest daughter. Sure, I still don't ever want her to suffer or struggle, but I have finally found that peace that I desperately searched for before Addie was born. My love for both my girls has multiplied more than I ever imagined it would.  Also, the love for my friends and family has grown a well as my faith. This journey is not near over, but so far, our family has been so blessed. I am so proud of our little family, and especially our newest little. And, my mom is right....the love between a mother and her child is a bond of the strongest kind.

P.S. we moved to the 8th floor yesterday. One step closer to home!!! Yay!!!

Monday, June 4, 2012

When is moving day?

The answer to the post title is....who knows! Dr. Forbess came by for rounds this morning and said he wanted Addie on 3-5 days steady weight gain before she goes upstairs. She has gained weight 2 days in a row so we have a start. He mentioned that they were worried at the end of last week and this weekend that her shunt might be too large for her (her heart and respiratory rates were up a bit as well as her blood pressure) so they wanted to make sure she was growing into her shunt appropriately. Not going to lie, it is kind of frustrating not being able to move upstairs yet because it is one step closer to being out of here, but I would rather them be as precautionary as they are. I think Scott and I are both ready to have a somewhat normal life again. We both miss Ellie terribly and are just really ready to be out of this hospital! I sometimes forget that Addie just had major heart surgery 2 weeks ago today and we have only been here 3 weeks this Wednesday. They told us to expect 4-6 weeks when we were touring so we are well in that range. Addie is doing well, but I am reminded how serious and scary her heart defect is (mainly when Dr. Forbess comes by). I am also reminded that I still need to be praying hard for my baby girl. Take one day at a time has never meant more.

Addie doesn't seem to mind a couple more days on the 3rd Floor