Monday, October 11, 2010

Monday, October 11th

It has been many days since we have posted a real update and I apologize ahead of time because this won't be a long post, but I wanted to get something up for those of you that are still following Aurelia's story. The biggest news is that Aurelia was moved on Saturday out of the Cardiac Intensive Care Unit to the Cardiac Care Unit. She isn't in need of as much "intensive" care, so she was able to go to the step-down unit. This, as all of our doctors and nurses have reminded us, is a good thing. This means that she is one step closer to going home. Good, but scary. Since we've been in the CCU, which is just across the way from the CICU, we've felt overwhelmed and a little scared about Aurelia's care.

Charley and I both know that Aurelia is in the best place possible and that this move to the CCU is a good thing, but because she was moved on the weekend, we feel like it is taking her new team a long time to get to know her and her case. We miss our nurses and doctors from the CICU! We also felt like our move to the CCU put us in a marathon sprint for the finishing line (getting her out the door!), and we don't feel at all ready for that.

Soon after her move to the CCU, we were told that she would be going home with a feeding tube and that Charley and I had to take an NG class (to learn how to insert the tube, if necessary, and to give her feeds and medications through the tube). We were both under the impression that we'd be working with the Speech Department to get her to take a bottle and to hopefully breastfeed one day. It was a big surprise to learn that the feeding tube wouldn't be coming out prior to our departure. Again, we felt like they were moving really fast and it is pretty overwhelming.

The other thing that has been frustrating is the concern about her oxygen levels. When we left the CICU, she was on room air. They were trying to wean her down to 21%, but she wasn't handling it well. They played around with the percentages and found that she was happiest with it between 25-30%. Since we've been in the CCU, they have continued to play around with her oxygen and to me, it feels like they are rushing to get her off of the oxygen. It is just another one of those hurdles that we are barrelling toward (and not necessarily ready to jump over!). Everytime we check in, the plan has changed and it is frustrating.

I certainly don't intend for this entry to be a big complaint, so I will share some of the benefits to being in the CCU. We were also given more opportunities to participate in her care - giving her a bath, changing the sheets on her bed, continuing to change diapers and that sort of thing. We can also hold her whenever we'd like. Charley and I have learned some of her cues and know that when she's cranky, she prefers to be patted gently while in her crib. It has been fun getting to know her a bit more. This morning Charley and I gave her a bath and then worked together to calm her down after she had an x-ray taken. It was nice because we felt like we were parenting our daughter and even though she is still surrounded by machines, it felt like we were providing the love and care that she needed. And, the bonus - we actually settled her down very quickly, which made us both feel really good.

In order to ease some of our concerns about the lightning pace that we felt we were on, Charley and I really wanted to sit down with one of the CCU attendings and ask a ton of questions concerning all of the various anomolies that Aurelia has. What types of things should we look for/be concerned about in the future for her heart, kidney, intestines, cleft palate, genetics, everything? We wanted to know about future care, follow-up care, and that sort of thing. I had the opportunity to talk with Dr, O'Connor, one of the attendings, but since he is just getting to know Aurelia, I decided not to bombard him with all of the questions (of which I didn't think he'd be able to answer at this time). I did, however, give him a heads up and basically said - get to know her case and then we can talk, because I have a bunch of questions that we need answered. Hopefully, in a day or two, we can start getting answers to some of those questions.

As much of our time here has been, this weekend was full of highs and lows. We learned that another family (who we knew from the RMH in Camden and moved to the Philly house shortly after us) lost their baby girl (also with HLHS) over the weekend. We were all reminded of how fragile these babies and their situations are. It was a heart-wrenching loss for a really nice family. On the up side of things, we had a nice (quick) visit with my dad and Uncle Mark, who drove down from CT for the day on Saturday. For me, another high was that I got to sleep in Aurelia's room last night. Since Charley was here with Madison (and my mom), I felt like I could stay the night at the hospital. In the CICU, sleeping cribside just isn't possible, so it was nice to be close to my baby all night long.

The other thing that was tough about Aurelia's first night in the CCU was that she was all alone. A tiny little baby in a big old crib, all by herself. I cried when we left because I was worried that no one would know if she was upset or sad or needed anything. After spending the night there with her, I feel much better about that situation! She is watched over and well-attended. Also, Aurelia does have a roommate now, a little boy named Hayden. He has 3 sisters, a mom and dad, and 2 grandparents. All of whom were visiting this evening when I went to spend some quiet time with Aurelia. The majority of my quiet visit was disturbed with many sounds of "Shhhhhhhhhhhhh..." from the mom, trying to quiet her girls down (even though the shushing was probably worse than the noise that the girls were making!). I had a nice visit with Aurelia, in spite of the shushing!

Our poor little Madison has a bit of cold right now, so we've decided to keep her away from the hospital for now. It is tough because I want Maddie to see her sister, but I don't want to chance Aurelia picking up any kind of respiratory illness. That is the last thing that she needs! For now, I'm trying to figure out how to juggle my time so that I'm spending enough time with both girls. Today went pretty well, so hopefully that trend will continue tomorrow!

I am exhausted so I am going to try to get to bed at a reasonable time. Thanks for reading and have a great night!



  1. Thanks for posting this update. Jason and I have been thinking of you both all weekend and checking the blog for news. I knew you were probably busy since your family time together is precious, and I really appreciate you taking the time to catch us up. Jay and I just sat and read this together, and we paused so many times to remark on how much this reminded us of feelings we had at different points with the girls, their step down transfer to Howard County (and the issues with Samina's oxygen levels both pre and post step down), the difficulty of splitting time between children, and Samina's discharge process, which went very fast post acute NEC treatment. We both remember how hard it is to make the adjustment from the level of care you are used to in the NICU (or CICU/CCU) to having a high needs infant at home with no immediate back up or high tech monitoring. I can remember not sleeping a wink Amara's first night home and just staring at her heart monitor all night long. The first time it alarmed at home without any nurses and doctors to alert was very frightening, but even though I felt not as prepared as I wanted to be, the reality was that they had trained us "well enough," and when the time came we knew what to do and she was OK. And the good news is, as you know, she outgrew all of that. One day Aurelia won't need the NG tube, but for now, you will do your best and even though you will likely not feel as prepared as you'd like (since probably the only way that would happen is to suddenly have a nursing degree!), you will be prepared enough, and you will do a wonderful job caring for her. And remember, It is OK to feel scared about the transition to home; it is very normal and, I think, amplified when you are all too aware of their fragility given the situations with other babies with similar issues.

    I will send you guys an email soon -- but for now I just wanted you to know I am here and sending lots of love. I hope you know I am cheering for Aurelia every step of the way, and I only wish I could do more to relieve some of the stress on all of you. I'm so glad you got to sleep cribside Jillian -- I hated leaving at night, and it must have been a really wonderful opportunity to get to be there with Aurelia and bond in that way. I am sorry Madison is sick, and I hope she feels better soon. Please send a hug from me. Love to you all.

  2. It is ok for you to complain! We are hear to listen. Will continue to keep all of you in our thoughts and prayers. Hopefully things will continue to improve daily!

  3. Like Peggy C said, it's okay for you to complain! we are here to listen! It does get frustrating...because just a few days/weeks back, your daughter was in the most fragile dates looming toward you and now things are moving so quick that you could be home super soon. Take the time to talk with the Dr or go find the nurses that took care of Aurelia when she was in the NICU...they might be able to help ease your mind.
    My daughter had her surgery and within a few days they were talking about sending her home. In my heart, I knew I wasn't ready to take care of my little girl on her own. And Lily must have read my thoughts. The dr soon as she was pooping, she could go home. Lily held it in for a day or 2! Thank God, those 2 days helped me get ready mentally and emotionally for taking home a post open heart surgery baby.

    We had to deal with a feeding tube, too. Most of our time with the NG tube was before surgery...and a few days after surgery. Then one day, Lily ripped it out even with all the tape holding it there...and started sucking on her pacifier like it was made of milk. We tried the bottle and she took bottles from then on. (it had been 2 months on the NG tube at this time). Aurelia will let you know what she can and can't handle. We let Lily be the boss so to speak...and I found out that my daughter was more than ready to be at home.

    It is nice that y'all were able to get Aurelia to calm down. After my daughter being in the hospital with the same night nurse the entire time (they really bonded), she would quiet down for the night nurse better than us.

    Sending thoughts and prayers your way for you, Charley, Aurelia and Madison (hope she feels better soon)

  4. It is wonderful that Aurelia has stepped down to the CCU but I remember how angry I was when a certain hospital that shall remain nameless (but rhymes with Bons Bopkins) transferred our girls to a step down NICU. These transitions are hard! It can be really scary. I loved the story of you and Charley soothing Aurelia. How nice that must have been for you both to get to do something so ordinary! It sounds like you and Charley are keeping quite a busy schedule. Hang in there and keep being kind to each other and yourselves! love, Jason