Friday, May 21, 2010 2:55 PM, MDT

Just a quick update today. Cassidy will be inpatient at TCH once again on July 14th 2010 for her Truncus repair. We will be back at Children's on the 13th for her pre-op and all of our meetings. Cassidy also was weighed in at the ped this morning and was a whopping 6lbs 5.25 oz. Not great in the gaining department, but still a gain. We are going to try one feed a day with some added calories and see if this will boost her growth a little bit. She is still such a tiny little thing! We bumped into a co-worker of Kevin's today and her niece who was born 11 days before Cassidy was with her. It really illustrated just how crazy tiny Cassidy is still! What a little cutie she was!

Anyway, I don't know how I feel about having a date on the calendar. I guess it is a good thing, having it pinned down. At least now we can start making some plans and get prepared.

Please pray that Cassidy can continue to grow. It would be great to get her up to 3500 grams before surgery. That is 640 more grams in 54 days. About 12 grams a day which should be totally doable!

Wednesday, May 19, 2010 8:07 PM, MDT

Today was Melody's Kindergarten graduation. We were busy this afternoon getting gussied up and ready to go the the ceremony, three girls getting cleaned up, hair done, and matching clothes! Oh, and trying to get myself cleaned up and presentable too. My mind was definitely busy concentrating on all that I had to do to prepare for the evening's festivities. Right in the middle of those preparations, I got a call from Cassidy's cardiologist.

I had to completely switch gears, as this call was about scheduling surgery. Cassidy will be having her cardiac catheterization on July 7 at 7am, and also another echocardiogram that day. Then the sometime during the week of the 12th, we will officially be inpatient at TCH again. I've done a whole lot of not facing this upcoming issue in the months that we have been home. It is hard to believe that we've been home for 9 weeks. In that time, we've had weekly appoints or more with cardiology, pediatrics, therapists, audiology, ad nauseum. Yet, somehow, I think I have detached myself from the reality that I am going to very soon hand my precious baby over to a team of highly trained specialists, and pray. Pray that they are able to repair my child's heart, completely, and without complications. And I will have to sit by, praying. And she will hurt, and I will be unable to kiss it and make it better. She will have to face a long road of recovery, and I will only be able to cheer her on. I will do everything in my power to help her, nourish her, settle her, but I cannot heal her. Facing the reality that I will be placing my sweet child into the hands of surgeons was not something I was prepared to deal with this afternoon. I still don't think I am fully facing that reality. I am so thankful that I have a faithful God, that I can place her in HIS hands, and know that He will be holding me just as tightly that day.

And then, I had to switch gears right back into Kindergarten graduation. We all got ready and headed to the library. The kids we so very cute! They had sweet little caps, tassels, and sashes. It was adorable. Melody had to share what she wanted to be when she grows up, and she said she wants to take care of cats (after much coaxing because she didn't want to talk into the microphone). Cute :) I was so proud of all our cute little co-op kids.

Yesterday, we had our first field trip outing, just me and FOUR girls! It was a lot of fun, and I didn't have a single issue. Which for us is just short of miraculous! The girls all really enjoyed the museum, learned some new things, and were really helpful and patient when our pace had to be a little slower than normal. They helped me with all of Cassidy's needs, and Cassidy had a lovely time hanging out in the sling :) We will definitely keep up the field trips, especially now that I know I can do it.

Oh, I almost forgot! Ainsley got home from her first sleepaway camp on Sunday! She had a super wonderful fabulous time. She loved loved loved it. Her counselor was a sweet gal that reminded me a ton of my sister :) She wants to go back next year, and hasn't stopped talking about camp since we picked her up. She also has remembered the lessons she learned while she was there, and I am hoping she can really apply them and take them to heart.

I am sure there are other things that have been going on that I ought to be sharing, but my brain is starting to shut down for the night.

Cassidy is 6lbs 5oz now, and growing a steady 10-20 grams per day. She is eating like a champ, which makes me feel so grateful. I know SO many others whose babies are on feeding tubes. I don't for one minute take it for granted that I am able to nourish my baby just like I have all the other girls. It is such a blessing, and I cherish every single feeding. I love to hear her swallow. And I love to watch her fall dreamily to sleep in my arms. She is so precious. I am typing this entry with her asleep in my arms, and I stop every few words just to stare and marvel at her sweet little face. Have I mentioned that she has the most amazingly long and full eyelashes? So glad she got those from her daddy!

If you remember us in your prayers, please pray for strength in the coming months. Pray for those surgeons, that they are guided every step by God's hand. Pray for our kids too, that they will weather the stress of the coming months.

Feeding Frenzy!

Wow! Just had a great great appointment at the lactation clinic today! We've been trying so hard to get Cassidy to transfer more while nursing, and this last week she has really been showing a preference for nursing. She has been sputtering every time we tried to give her a bottle. And we usually offer her a bottle after every time she nurses just to make sure she is getting plenty. It is just a pain to do, and she was really upset with us when we would try to give her the bottle. So, today, we did a before and after weight check, and she transferred 66mls!! Her goal for a feed is 50-60mls!! That is a full feed plus some extra! Wow! I am just praising God that she is doing so well. I recognize full well just how fortunate we are that she is nursing at all. So many other Truncus babies that I have read about have g-tubes and have so many DiGeorge babies have such trouble feeding. I am so VERY thankful that we are doing so amazingly well with her feeding on her own. I am thankful that her cardiologis

ts and pediatrician are willing to let her work on feeding on her own. I am just so so so so so so thankful and happy right now to hear that she is transferring a full feed on her own. Thank you all for your prayers! God is good.

We are also planning to see some specialists this month. The ENT will be at the end of the month, and immunology will also be sometime this month. We also had our conference with OT/PT/Speech, and they reccommended OT services, so we will be setting that up soon.

May is just going to be a crazy month!

Ack, well, Cassidy is crying, so I am going to post this even though I am sure I have more to say and I haven't edited to see if this post makes any sense! But if I don't post it now, it may languish on my computer for days!

Thanks for all your continued prayers!