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!

Multi-tasking Mama

I am sitting at the dining room table, eating my lunch, snuggling Cassidy, chatting with my sister, and trying to blog all at the same time. I am watching the snow start to fall outside my window once again, and feeling a bit guilty for sending Melody to co-op in a sundress. Whoops!

Life has been really busy lately. We've been on the go nearly every day, usually with early morning appointment

s for Cassidy (to get seen before the waiting room fills up with germs) or therapy for Liberty, or just run-of-the-mill life things. Sometimes we have appointmets every single weekday. Yipes. But so far things have been going really well. Cassidy is still growing, though at a snail's pace. But any growth is good news. She is now more than 2500g, so she can technically head to surgery at any time. But her cardiologist in town has told us that he would really like to just continue to let her grow until closer to six months as long as all the rest of her vitals are okay. So it looks like we won't be heading back to Children's for surgery until mid-summer.

We've also had our initial visit with the Physical Therapist, Speech Therapist, and Occupational Therapist in town. We will hear their plan for treatment next Monday. We know Cassidy is delayed in her development already, and the goal is to work hard at catching up before surgery so that she doesn't get further delayed at the next hospital stay. It is another benefit to postponing surgery because it gives her time to catch up and get bigger and stronger.

I've been calling all around to find someone to tell us about Cassidy's immune function. It was funny because our ped (who I love) got to experience the running around in circles feelings I get all the time when she was trying to find out about vaccinations for Cassidy. We know for sure that she cannot ever have any "live" vaccines, but as far as the other types go, we just don't have any clue. Immunology told her one thing, genetics told her another, and no one knows for sure. So yesterday I began the process of getting her seen by someone. It only took about 10 phone calls, 2 nurses of doctors who couldn't help me, and one nurse who could to find out that we won't be seen at Children's for immunology at all, but instead we will go to National Jewish. But I am all for seeing the best of the best, particularly because her immunity is the one area that I continue to be most concerned about.

We will also see the pediatric ENT to find out more about Cassidy's palate. There is some concern that she may have a submucosal cleft, but no one has checked to be sure. So hopefully we will get an answer to that as well at the end of next month.

Yesterday, Cassidy weighed in at 5lbs 11.5 oz, 2580 grams! It is such a big deal to finally pass that 2500g mark! She is also getting longer, outgrowing her preemie clothes because her little legs are too long for them now! It is so adorable, she is swimming in her newborn clothes, but the preemie ones are stretched tight.

Our big girls are all doing well. We've been making lots of trips to the neighborhood park, where they ride their bikes around in circles and pretend to be miners looking for gold in the rocks. And then, we have snow today. Crazy Colorado weather.

Also, please be in prayer for my parents and my grandma. If you remember, she was here with my mom, helping to take care of my girls while we were in Denver. A few weeks ago, my grandma had a stroke and has been in a care facility recovering. But they've also discovered that her heart is not functioning as well as it ought. She is heading home today. Please pray for my mom as she takes care of my grandma, and for my grandma to have a wonderful quality of life at home for a long time yet to come.

Specifically, you can pray for Cassidy to keep packing on the ounces :) She has started nursing much more frequently, but she needs to start transerring more milk at each feeding in order to get enough calories to grow. Pray that all of the specialists we will be seeing in the next few weeks will know exactly how to care for Cassidy. Pray for Ainsley, as she will be going to her first sleep-away camp next month. Pray for Liberty, that she will continue to grow in her therapy sessions as well. Pray for Melody, that she will have a positive attitude, and choose to keep her sweet spirit instead of being angry. All of us are under a lot of stress, and we are looking forward to the summer. We really would like to have one camping trip as a family before Cassidy has surgery also. It would mean a lot to Liberty especially. Not sure how well all six of us will fit in our tent, but it will be fun trying :)

A call from the pediatrician

I love our new pediatrician. She called me today just to let me know that she got some test results from another office and wanted me to have the results. I actually already knew the results, but the fact that she called was so nice. I was also able to ask her about Cassidy's reflux without having to go into the office. Which is a good thing since we have weekly appointments with somebody already.

I have also been able to enjoy just being a new mommy again with a sweet little baby. We've been trying to nurse a bit more, and it has actually mostly been working. We can't exclusively nurse yet, but occasionally she will take an entire feed without a bottle. I've also gotten to start using our sweet cloth diaper stash! Such fun. Who knew that diapering a baby could be fun?! I took lots of pictures of her in the teeny tiny colorful diapers.

I've started doing a few things that I enjoy as well, like sewing and editing photos. I love to sew and have sweet little finished products. And now I am able to sneak a few minutes here and there to actually do my own projects. Of course, I can't do any one thing from start to finish! In fact, I just started this blog post without a baby in my arms, and suddenly, I hear a fussing babe who needs her mama!

******************************************************************************

And now I get back to this post TWO DAYS LATER! Good thing drafts are saved instantly :)

Let's see, other fun happenings. . .

I started my first quilt. I need to get some pictures. I have finished piecing the top, and now the fun part of actually quilting it! Ainsley, Liberty and I are also sewing little shoes for Cassidy, so that is fun. We also went to a little health and fitness for kids expo where we learned about lots of healthy snacks. We even had chocolate chip cookies with chick peas in them, yum. And something sneaky I would totally do! We met a female Olympian weight lifter. It was a fun morning, and nice to get out and about. I had lots of people saying they were impressed that I was out with all my kiddos, and that I looked great for having just had a baby, so that was nice too :)

Oh, and we saw the Cardiologist on Thursday. She was 5lbs 2oz, 2330g. So not as big of a gain as the previous week, but still gaining. She is a bit over 1 pound heavier than her birth weight. We discussed her surgery, and Dr B. is hopeful that we will be able to make it until mid-summer before surgery. He said they want to do it before she is six months, but hopefully only just before! So she may even be sitting up or rolling over before then, and the more core strength she has the better, because she will be unable to be on her tummy for six weeks after surgery. So that was great news!

Well, I have somehow lost all train of though and coherency, so I think its time to post! Haha.

The new normal

Wednesday, March 31, 2010 7:56 AM, MDT

We have had a great couple of days!! We've had several praises from our last two appointments! Thank you all for praying with us.

Monday morning we made it to Parker nice and early. The Children's Hospital facility in Parker Adventist is really nice. We were the only ones in the waiting area first thing in the morning, and headed back with the audiologist quickly. The big girls brought along their gameboys and a few books, and were so good during the almost 2 hour long diagnostic. Why didn't I think about the fact that it was going to take so long?! But they were so well behaved, and I was really pleased. The audiologist was able to just do the newborn screen over again that Cassidy had previously not passed in the hospital. Cassidy passed it completely! No signs of hearing loss at all! She will be followed as she grows because of the chance of hearing loss that comes with DiGeorge. We don't have to go back again until Cassidy is between 9 and 12 months, when they will do a developmental hearing assessment. But right now her ears have a clean bill of health!

We decided to make the most of our day up in Denver, and took a trip to The Giggling Green Bean, our "local" cloth diaper shop and baby boutique. I was completely enchanted by the shop! I wish we had one in the Springs!! I bought a bunch of tiny diapers to fit our teeny little miracle. They are SO cute! The plan is to take some pictures today, so I will try to get those posted sometime today. While we were in the diaper shop, I weighed Cassidy and she was around 2200g! That was with her diaper on, and on a different scale, so I wasn't holding my breath that she'd actually gained that much. But it was good to see her moving in the right direction!

Tuesday morning was her official weight check at the pediatrician. Her official weight for the week was 2250g! That is 4lbs 15.5 oz!! She had gained an ounce a day since a week ago Saturday! When she had only been gaining a few grams a day, we were happy when she gained an ounce in a week. A half an ounce a day is considered adequate growth, and she doubled that! We also had discontinued the formula additive we'd been putting in her breastmilk because she was getting really gassy, fussy, and having very nasty smelling bowel movements. She was also spitting up a lot, violently through her nose. It was so stressful feeding her every single feeding. Since we stopped adding the formula, she has significantly decreased how much she spits up, had much less gassiness and fussiness, and has increased the amount of milk she will take each feeding. Before we were measuring in mLs, she'd take 30 mLs to 40 mLs each feed, and getting her to take 40 was a struggle. Now she is consistently taking closer to 60mLs, or 2 ounces! And it isn't a fight trying to get the last 20 mLs into her! Also, her O2 sats are right where she should be while she is eating and at rest. Good news all around. Oh, and at her current rate of growth, she should be 5 pounds this morning!!!

While we were up in Denver, we also stopped by the Hammond's Candy factory and did the tour. I was thinking that on a Monday morning, it would be pretty quiet and not too germy. And I knew the big girls would really enjoy seeing the factory at work. Silly me, I didn't think about the fact that is was Spring Break! There were quite a few people on the tour with us. I had Cassidy in the Baby K'tan sling, which keeps her covered and close to my chest, so I didn't have anyone trying to touch her. We also loaded up on the purell! I am afraid I am going to turn the big girls into complete germophobes. I already had them trained that kid play areas are huge germ factories, but now we look at every place we go as a germ factory. The factory tour was short and perfect. We really enjoyed seeing the people making giant suckers and looking at all the old machinery. We will definitely go back again because each time we will see different candies being made. We've been enjoying the candies that we bought and our free samples as well. Yum!

Yesterday, Liberty also had speech and occupational therapy. We shopped a little in between. It was a busy, busy day.

Today we are going to stay home, get lots of schoolwork done, and try to get some rest!

Please pray that as Cassidy grows, her lungs and heart continue to function well. We know that surgery is in our future, but the more she grows and develops, the better off she will be. Pray that she doesn't slip into congestive heart failure and pulmonary hypertension. Also, pray for our big girls. They are very aware of the fact that Cassidy needs surgery, and they are showing some signs of being stressed about it. They've been having some bad dreams, and have been fighting with each other and with us. Pray that Kevin and I will have wisdom and patience in the situation, that we will know how best to deal with their stress. Also, we are applying for financial help with Social Security, the state, and Medicaid. Pray for me, that I fill out all the paperwork correctly, and that we get approved!

Growing

Sunday, March 28, 2010 1:00 PM, MDT

This is why I am a terrible blogger, I am terrible at regular updates!

Let's see, since last I updated, Cassidy has started eating larger feeds, she has taken up to about 55mLs in one feed, which is almost double what she was taking before! We visited her pediatrician for the very first time, and at that appointment, she'd put on about 100 grams! She weighed 2050g! And then the following Tuesday she was up a little more even. So it seems like she is moving in the right direction. Though, she started spitting up more and having really bad gas and reflux, so we've cut down on the additive, and just tried to get her to take more mLs each feed instead. She has another weight check on Tuesday, so we will see how she does.

Tomorrow morning we have a super early appointment with the Audiologist about an hour away, so that should be interesting getting there on time. It is a follow-up for her newborn hearing screening.

We also don't have to go back to the Cardiologist until April 8th! He was very pleased with all of her stats, her O2 saturation, ekg, heartrate, perfusion, etc. He said we really don't even need the back-up O2 at home, but we are keeping it around for peace of mind. We haven't had to break it out at all, but it is nice to know we have it in case of an emergency. Depending on how she looks in April, we may get closer to knowing a date for her open heart surgery (OHS). They will also do a catheterization before they do the OHS. It has now been the longest Cassidy has gone without some form of x-ray or sonogram in her whole life :) Oh, and something really neat came in the mail: a cd with all of her x-rays from her stay in the first hospital with all the reading information included! Never had something like that before, and I love it. I love that the hospital is keeping records electronically, and that we get our own copies of those records! I wish we'd get one from Denver too!

We've also battled our first round of sickness in this house since Cassidy came home. Kevin came down with a serious case of strep. He went to our family doc and they treated him aggressively on Friday, giving him a shot of penicillin, nasty killer mouthwash, and medicine. Fortunately, it seems the rest of us dodged this bug!

My folks made it home safely, and even took a little side trip to the Grand Canyon! It was my dad's first time there, and I think they had a good time. They even made it home in time for my mom and grandma to watch Dancing with the Stars. I enjoy teasing them because it starts 2 hours earlier for us, so I finish watching before they even start. Especially around finale time, I threaten to text them the results! Gotta enjoy the little things, right?

It has been a little strange trying to get back into some sort of routine. Life is so different, and this time at home is sort of surreal. I think the looming surgery is sort of like the elephant in the room that no one wants to talk about. I know that whatever routine we get into now, is only going to be interrupted in the near future, and a new one put into place all over again. Right now we are just trying to enjoy every moment having this sweet baby with us all together at home. Soon enough, life will be turned upside down again. We will be living in the hospital, praying for our tiny baby, and putting her life into God's hands all over again. And it is hard for me to face that reality. Right now, I can almost live in denial. She looks so healthy, so happy. From the outside, nothing appears out of the ordinary, apart from a a little skin discoloration. And it strikes me that many of us live our lives that way, don't we? From the outside, we appear to have it all together, maybe just a character flaw here or there that is no big deal. We go about our daily lives pretending to be just fine. Sure, we aren't really growing all that great, we stay relatively the same. But we hide it pretty well, and those who don't know us intimately probably would never notice anything was unusual. But inside, we are a complete mess. Nothing looks like it ought to, and we are just barely functioning. Cassidy's body works twice as hard inside just to get by. Her heart functions, but only just. Spiritually, we all need a new heart. None of us is born functioning the way we were created to. And without the healing of the Great Physician, we can never reach our true potential. I want to live my life with a new heart. One that functions the way He originally intended. One that beats steadily for him, and allows me to do all that I was created to do.

Cassidy has already taught me so much, in her short little life, and I cannot wait to tell her about it as she grows: her impact on so many lives, just by being born. And I pray that she will be able to tell others her story as she grows, and impact every one she comes in contact with as she grows up big and strong.

For this week, could you please pray that we have a good appointment at both the Audiologist and the pediatrician. Pray that Cassidy continues to learn how to breastfeed. Right now she cannot nurse effectively, and that makes for VERY long nights between bottles and pumping and diaper changes. Kevin and I are not getting a whole lot of sleep these days. She has to eat overy three hours minimum, and by the time we get through each nightly feed, we can get maybe two hours of sleep before we have to start all over again. Also, please pray that none of the rest of us ends up with Strep! Pray that we all continue to remain healthy before Cassidy has surgery. I want to be able to keep sending my girls to co-op, but if stuff starts floating around more, we are going to have stay home, and that would really disappoint them.

Oh, and I wanted to say thank you again to Kevin's co-workers! The swing is perfect, and the big girls have been carrying around their bags and their coloring books all week long. And thank you to everyone who provided meals for our family. It was such a relief to me not to have to worry about my family having healthy meals while I was not here to cook for them. I am thankful that I have an amazing husband who is also willing to step in and make meals for us. I think the girls prefer his cooking over mine any day! Thank you for the notes of encouragement as well. I read the guestbook every day, and just feel so loved. I know that it may not seem like much, but it is huge. Just knowing that so many of you are praying for Cassidy helps us feel so encouraged. I hope one day I can give each and every one of you a great big hug and say thank you!