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!

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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!

A busy week

Friday, March 19, 2010 1:27 PM, MDT

This week Cassidy spent time eating and eating, but not growing. We saw the lactation consultant and Cassidy had dropped about 10 grams, then saw the cardiologist and she'd dropped even more. Yesterday she only weighed 1910 grams. So, we are working on increasing her caloric intake without increasing the amount of work she as to do to get those calories. Also, she is having some reflux -type issues which we will be discussing with the pediatrician tomorrow. Overall though, she looks amazingly healthy and is a very happy and content baby, as long as she is held or swaddled, and you aren't changing her diaper! We also recently switched her out of the carbed carseat into a regular infant seat rated for her size, and that seems to keep her much happier in the car. Especially because she doesn't have to get chilled getting in and out of the seat outside.

It has been really nice being home! My dad arrived just a couple of days after we got home, and has been keeping the girls entertained and helping out with projects around the house. He also found a deep freeze for our garage for a great price! Now I can keep storing my milk for a little while longer until I overflow that freezer too :)

My mom and dad also took the big girls skiing at Monarch yesterday! It was so great for all of them, and I think they all had a wonderful time. Ainsley and Liberty had 2 days of private lessons in Crested Butte in December, Melody had one. They all LOVED skiing, and were doing really well after those two days. But I wasn't sure how well they would do this time. They did amazing! Even Melody, who just loves to fly down the mountain, but doesn't really know how to stop! It makes me so happy that they love skiing, since I have so many great memories of growing up on the mountains of California. And it was my parents' first time skiing in Colorado. We have the best snow in the country!

Kevin has a snow day today, so we all are just hanging out around the house, enjoying being a family. I am really going to miss my folks when they leave us this weekend. It has been such a blessing having them here, and I can never repay them for all that they have done for us and sacrificed for us since Cassidy's birth (and really my whole life!). We all love them so much and appreciate them like crazy. I am listening to my dad install baseboards in my bathroom right now! Thanks Dad!

Prayer requests this week would be: a safe journey home for my folks, weight gain for Cassidy, a good initial appointment with the new pediatrician, and no more reflux. Also pray for my girls, who will really miss my parents when they leave! Please pray for me next week as I begin managing my own household again as a mommy of four with an infant!

Home!

Friday, March 12, 2010 3:30 PM, MST

Home!!! Sorry I haven't updated since we've been home, I've been busy reintegrati

ng myself into regular life, plus one. It has been so nice to have my mom and grandma here helping. I've been able to take naps still :) We have been to two cardio appointments since we've been home; a reminder that just because we are home doesn't mean this journey is over. Cassidy has the very big job of eating, sleeping, growing and gaining weight. So far she has the first two down, not so much the growing and gaining weight.

The big girls are so glad to have their baby sister home. They help get diapers, pick out clothes, bring medicines, anything they can to help. They also fight over whose turn it is to hold her and for how long! It is so very sweet. The biggest joy for me has been the change in attitude of Liberty towards parenthood. She has ALWAYS said she never wanted to get married or have a baby. Now, because of Cassidy, she has decided that she would like to have a baby when she grows up! What a huge change. She just adores Cassidy, dotes on her, and loves to be involved in all of her care.

It is so nice to be home, making my own meals, sleeping in my own bed, tucking in my children at night, snuggling with my husband, visiting with my family, holding my baby without any wires. No beeping monitors, except my timer that alerts me when it is time to feed or medicate the baby. It's just lovely.

Now, I need to get the table set for dinner. I am cooking my first pot roast in my new birthday crock pot :) It smells delicious!

All together now

Sunday, March 7, 2010 7:10 AM, MST

Spent all day yesterday with my whole family for the first time. It was SO great! The girls just loved meeting their baby sister, and just wanted to hold her all day long. They were so sweet and tender with her. It just melted my heart!

Cassi

dy had a big day as well. She started nursing, which is going ok, but not fabulously yet. She is up to full feeds. And she got to have her PICC line removed!!! She is practically wireless now! The only thing she has is monitor leads and the pulse/ox monitor on her foot. She is taking all of her medication by mouth. She is eating well and even moving her bowels well! We were going to do her carseat test, but her carseat was too big. We may need to return her carseat and purchase one meant for babies 4 pounds and up instead of 5 pounds :S Urg. But if that is what it takes to get her home, then that is what it takes!

As long as she continues feeding well and shows all these positive signs, we may actually be out of here by tomorrow! That is our biggest prayer request right now, that her diapers continue to be good, her weight continues to go up little by little, (which it didn't last night, but she had lots of changes so they aren't too worried, even though she was down to 1956 again), and that there are no more complications. If everything continues as it has been, we will hopefully be out of here Monday!

Thank you all again for your prayers. I will continue to update this journal, even once we leave the NICU. We will be back in Children's for surgery sometime in the next 8 to 10 weeks, if all goes as planned. And I know we will need your prayers to get us through the next difficult phase of this journey, as well as just getting to a surgery date. Thank you for journeying along with us, celebrating the little triumphs, praying over the setbacks, and just supporting us.

Tube free!

Saturday, March 6, 2010 6:36 AM, MST

I've posted a couple of quick status updates on Facebook to say that Cassidy's feeds have been going fabulously. She has been tube free on her face since my birthday and has been downing every feed except one, which she took most of during the middle of the night. She is gaining weight, was 2026g last night! Her oxygen saturation levels (sats) have been lower which makes her cardiologis

ts happy but makes nurses nervous :) She had a chest x-ray night before last and it looked good. There are even rumors floating around that we may get to go home early early next week!

Today should be a great day. Kevin and the girls are coming up for a visit! The girls get to go to a NICU sibling class, where they will learn about life in the NICU and also make a gift for the baby and something for themselves. And after their class, they get to come in for a visit!!! I am so excited for them! Be prepared for lots and lots of pictures of their first face to face meeting :)

I am also hoping to get to start nursing Cassidy again today. I am so thankful that my milk supply has been so great, so she has only been getting breastmilk in her bottles. But it will be so much nicer to actually nurse my baby instead of pumping constantly.

I just can't believe we might actually be going home very soon! We'll have to come back in about 8 to 10 weeks, but that time at home is going to be SO wonderful. Please pray that Cassidy continues to do well so that we can get out of here. Pray that we have a great visit together as a family. And pray that everyone continues to have patience and a good attitude at home while we wait out these last few days.

My birthday adventure

Thursday, March 4, 2010 10:20 AM, MST

Had a great birthday yesterday!! Cassidy ate great, and even pulled out her NG tube by herself :) She got her iv off her head, and even is wearing a onesie now! So I came back to her room for her 5pm feeding and she was looking like a new baby!

The family came up and we hung out at the big park near the zoo. We had a picnic lunch, opened gifts, and played on the playground for quite a while. The weather was gorgeous! The birds were huge, especially the cormorants, wow. Then we went to the mall and walked around, bought some cute headbands for the girls and adorable matchy-matchy dresses for the girls. Still need to find one that fits Cassidy, as they didn't have any more tiny ones at Children's Place. Also got the most adorable jacket for Cassidy at Janie and Jack, how I LOVE their clearance rack!! And a tiny little pompom hat for Cassidy from Children's Place for 99cents.

After making it back to the NICU for Cassidy's 5pm feeding, we went out to dinner at BJs, mmm pizza and pizookie! So tasty. Oh, and my mom and my grandma both got some snuggle time with Cassidy, as did Kevin and I :) I have pictures to upload, but I won't get to it until after the 11am feed today.

Well, its almost time to feed my baby again. We are almost up to full feeds and nearly weaned off the TPN that was keeping her nourished for all that time she was not eating. Hooray! I am so proud of my tiny little fighter!

Therapy and progress

Wednesday, March 3, 2010 7:09 AM, MST

Tuesday was filled with more visits from cardiology, occupational therapy, and doctors and nurses. Everyone is saying how great she is doing, and how great she looks! She is tolerating her feeds well, and has already had her first increase to 9mls last night at 8pm. She will start to have 3ml increases every 12 hours as long as she keeps tolerating feeding well. She has been taking nearly all her feeds by mouth as well, which is huge! Because she is a cardiac baby, she tends to tire quite quickly. So getting her to full feeds by mouth might take a bit of effort, but it is great that she has been building up some stamina.

Once we get her eating full feeds by mouth all the time, we will be able to be discharged until surgery!! This is our goal, to get us to go home!!

Today is my birthday and the family is coming up to visit :)

Cassidy is waking up and it is not time for a feed yet, so I need to go soothe her for 45 minutes. Yipes.

Feeding again

Tuesday, March 2, 2010 8:54 AM, MST

I am writing this entry from our new private room. It is so much more peaceful and less cramped, but I hope our stay in this room is short! I do like that I have a rocking chair, a window, my own bathroom, and a fridge for my milk. Yup, its the little things!

Cassidy had sort of a rough day yesterday. She was doing fine, but she had to have several procedures all in a row, and then try her first feed in a week right afterward. She had a kidney ultrasound to check for proper kidney development. She also had her first blood transfusion to hopefully boost her hematocrit levels. (Which it seems to be working) And she had to get another iv in her head to accomodate the transfusion since her picc line is too tiny. Of course they poked her three times trying to get the iv going, poor kid has her mommy's veins :(

So, after all that, it was time to give her the first 6ml feed! Of course by then she was completely exhausted. So she took about 2mil, and the rest was gavage fed. Three hours later, she was still pretty tuckered out, took 2 ml by mouth and the rest through her tube. But, by the third feeding, she was ready to go and took the whole 6ml! She did that throughout the night :) It is so wonderful to have her able to take so much by mouth!

Really, getting her feeding like a normal baby is our only obstacle between us and going home until surgery! So, our prayer is that she does super well with feeding, with no more bouts of nec!

Pray for the stress levels of all of us, the girls, Kevin and me, my mom, etc. This whole experience is really draining, and I think it is hardest on the ones at home! Pray that as Cassidy's feeds increase today that she continues to tolerate them well and gets stronger each and every feed.

Truncus Arteriosus & 22q11.2 microdeletion

Monday, March 1, 2010 8:43 AM, MST

We are going to finally start using a teeny tiny bit of the gallons of milk I have pumped!! Around 3mLs every three hours for the first day is what I heard, but it is a start!

Cassidy had a much better night last night, and was much easier to settle when she did wake up. She also loved her swing yesterday!

I mentioned that God's hand has been so evident throughout this journey. When we first received the diagnosis of Truncus Arteriosus, our neonatologi

st and cardiologist ordered a genetic test because approximately 30% of kids with Truncus can also have a genetic disorder called DiGeorge Syndrome. We were told it was just a precaution because they really didn't see any characteristic evidence of the disorder, but it was best to be safe. Cassidy really likes to be one of the small percentages. We were told this past Friday that she does in fact have the 22q11.2 microdeletion that indicates DiGeorge syndrome. DiGeorge actually has several names, Velo-Cardio-Facial Syndrom, Shpritzen Syndrome and more, though 22q11.2 microdeletion describes best the exact genetic problem. Well, yesterday on the second floor of this hospital, there was a symposium for parents and doctors, students, and specialists by a group called Chromosome 22 Central specifically about 22q11.2 microdeletion! Kevin and I were able to attend together and get our brains filled with massive amounts of technical information, as well as more practical information from parents and behavioral specialists.

In many ways, this syndrome seems really scary, just because there are 185+ different issues that can be associated with the deletion, and we basically have to go through the list as sha grows and check them off one by one whether she has it or not. And there are many varying degrees of severity that children with 22q present with. But because we know so very early, she will have all the interventions and help we can find made available to her. And dealing with a special needs kid isn't foreign to us!

Some of the charactistics are silly little things like flat feet and an outie bellie button are possible. Some of the characteristics are much more severe, like her Truncus, a possible submucosal cleft palate, missing thymus and therefore a compromised immune system. We will definitely be investigating with further testing to see just what issues pertain to us. So much of it feels managable and some of it is too overwhelming to start thinking about until she is older.

That is where we are at now, and you can understand why I was frustrated with myself for saying things were routine!

It is crazy that my daughter now has geneticists and immunologists on her team, as if neonatologists, gastrointerologists, cardiologists, and cardiac surgeons weren't enough! And there are probably more that I am missing. Not sure how I am ever going to keep them all straight.

I am now going to go poke and wiggle my baby so she will wake up and have her first feeding in over a week.

Pray that the symptoms of 22q will be mild in their presentation in Cassidy as she grows. Pray for wisdom for her team of doctors. And pray especially that her belly has healed completely, and that feeding will go smoothly, so that we can go home! Pray for our family at home too. They miss me like crazy, and I miss them so very much. Kevin has been so wonderful with them, and so tender in his care for me and for Cassidy. We just really want to be all together as a family. It will be good for all of us, Cassidy too, I think!

Hunger

Sunday, February 28, 2010 8:22 AM, MST

I am holding my snuggly little babe right now as a type, and I have to tear my gaze away from her sweet little face because I am not much of touch-typer

, and also my space bar and my "a" don't always work.

We had a pretty long night, and Cassidy spent every care time screaming and having huge mad fits. She hasn't ever been that way, and I didn't know she could scream that loudly (which is still pretty quietly!) I truly think it is hunger that is causing her to be so upset. We are praying that tomorrow will be the day we reintroduce feeding.

God has been orchestrating so amazingly this journey we have been on. Our little heart baby, born on Valentine's Day, had a holiday every day of her life the first four days, transferred to Denver the day after my mom arrived, born with a CHD during national heart month, etc. One thing after another that just has lined up perfectly by God's design. Now, as we face yet another aspect of her condition, we are told that there will be a symposium in this hospital today for doctors and families discussing exactly her most recent diagnosis. Coincidence? No way, God's design! Kevin and I will attend this conference today from 12-5, and then I think I will feel more equipped to share about this next part of the journey.

Also, did you know that 2.5 kilos is around 5lbs 8oz? Cassidy is bouncing around 1940g lately, which is 4lbs 4oz. We would love to get her to 3kilos or more before her surgery, which is 6lbs 10oz. All of those numbers still seem really tiny to me! Especially because they are below the birthweight of most normal kiddos! And Liberty was even 8lbs 7oz at birth! A bigger body gives the cardiac surgeons a bigger canvas to work on, and we want them to have the biggest space possible to create a flawless design on her heart.

Did I mention she was fussy last night? Oh yes. And none too happy this morning, though she only had to have a tiny heel stick to check her glucose levels. Her day nurse just brought us a swing, which may give Cassidy some new stimulation and a nice way to relax. I cannot wait to lay her down in her swing, just like I would be doing daily if we were at home! It is the little things . . .

I miss my girls. They miss me too. They are doing well with Daddy and Nana and Grandmama, but it isn't the same without Mommy. Somehow cloning doesn't seem so bad at the moment! lol Does anyone remember that crazy movie, Multiplicity? I could use one of those devices about now. I may be getting a little goofy from the lack of sleep!

Let's see, what else? I got to Skype with my dad yesterday and he got to watch Cassidy sleep. My sister caught me on Skype as well. That was fun. The girls all skyped with me while Cassidy was wide awake, and they thought she was so funny with her little noises, faces, and yawns.

I've been eating up all my groceries, trying to stay healthy and keep my milk supply up. Blueberries and cream oatmeal with fresh blueberries on top, yum. In fact, my stomach is starting to rumble now, since I haven't eaten and it is nearly nine o'clock! I guess that is my cue to wrap this up. I won't promise to post later after the symposium, but I like to think that I will have time later this evening. If you want to stay updated without needing to come back to check all the time, just subscribe to my journal and it will let you know when I update!

Thanks for all the prayers, we so very much appreciate them! Thank you for surrounding our family with your love.

Curveball (diGeorge diagnosis)

Saturday, February 27, 2010 9:59 AM, MST

Why did I say routine? I should have known better! I need to learn that life in the NICU is anything but routine.

Yes

terday was a difficult day. More issues to worry about, and it was supposed to be our special relaxing day visiting with the family.

I did just love seeing my girls. There was even a special story time in the main area of the hospital, and the girls were able to pick out a little gift for Cassidy and pet a special little dog. It gave them something to do while Daddy and Nana visited with Cassidy. We ate our sack lunch in the cafeteria. The girls told me about the daily little things happening at home which I miss so very much. Then we walked around the nearby mall, bemoaned the germ-infested play area, and did lots of hand holding and hugging. I can't imagine how difficult this is on them, because they have never been away from me for such an extended period of time. If it weren't for Kevin and my Mom, I wouldn't be able to be with Cassidy when she needs me, and I am so thankful that I can feel complete trust in them to take great care of the girls.

Right over the little wall that separates my nook from the one next door, a six day old baby is undergoing his second surgery. Again, I am reminded how thankful I am that Cassidy is stable right now. If we still lived in California, she would be recovering from her first open heart surgery already. And she is just such a tiny little thing, I cannot imagine how itty bitty her heart must be right now. I saw one of her absolutely miniscule veins that they were trying to thread for the PICC line, and how difficult just that small procedure was. Open heart surgery is just so hard for me to even consider as a possibility. Even though I know it is coming in the future, I am just not prepared to deal with it at this time.

I am sitting here, gazing at my baby, and wondering just what God has in store for her, for me, for our family, and just how she will impact the world. She is a tiny little package of potential. I know that no matter what future test results show, future surgeries hold, that God will carry us through. I am clinging to him day by day.

Forgive me if my entries ever seem to ramble! I always start an entry at some point during the day and then I get interrupted, lose my train of thought, and try to pick up where I left off without really reading back over what I have written!

Thankful

Friday, February 26, 2010 8:45 AM, MST

The past few days here in the Nicu have been fairly smooth and dare I say, routine? She got a clear x-ray of her GI track the day before yesterday, so we've been two days free from more x-rays! That clear x-ray officially began the countdown to the reintroduct

ion of food! Dr. H said we may even be able to start again in 5 days. So we are looking at making it through the weekend and possibly starting feeds Monday, but not later than Wednesday, which is my birthday! So that will be wonderful! We are so anxious to get her growing, and of course we don't want to compromise her recovery by pushing her too quickly.

I am reminded daily by living in the place, just how much worse it could be. I am suddenly thankful that it was just NEC, and just open heart surgery in the future. Isn't that crazy? But there is a little guy next to us on ECMO, where a hundred machines (and literally two full iv towers of meds) are keeping his body alive and doing the function of all his vital organs. It is truly a miracle of modern medicine. There are just so very many tiny, sick babies in this unit. And I feel blessed to have a baby that I can hold whenever I please, bathe, snuggle, kiss, and even dress in a little hospital t-shirt. She just doesn't look sick, and even though I watch her numbers obsessively, she continues on fairly even keel and easy going for someone who is basically starving hungry all the time. I am also so very thankful for the TPN which provides her with lots of nutrition, protein, lipids, electrolytes, etc. I know that even though she doesn't get to eat, her body is getting the nutrients it needs to thrive and even grow a little.

I spoke with her cardiologists yesterday, who seemed pleased with her progress. Drs M and S were encouraged to see her gain on the TPN and would love to see her thrive and go home to continue growing for the next 10 weeks or so.

She also got the last iv out of her head the night before last and all the tape off yesterday morning. Her nurse Diana and I gave her a bath, scrubbed her head, and gave her a clean dressing on her PICC line. So Cassidy looks all fresh and clean, with only a little adhesive left in her hair! :)

She is sucking her pacifier like crazy.I am really hoping that will make it easier for us to transistion back to nursing when we introduce food again! I am still trying to singlehandedly fill up the milk bank here, and so far am making a valiant effort if I do say so myself!

The last two days have been a bit easier emotionally, probably because she is doing so well, and everything sounds so good at home. Today the whole family is coming up to visit me! And I have had that to look forward to as well :)

Liberty and Melody have been on nebulizer treatments for their coughs and that seems to be improving. I am hoping they will be healthy enough to visit with Cassidy soon. I think I've mentioned that I could kiss the inventors of Skype for making it possible for us to stay connected, and giving the girls the opportunity to feel as if they are interacting with their baby sister.

Well, I will probably have plenty more to post about later today, it seems we can't go more than a couple of days without additional curve balls being thrown our way.

A long night

Wednesday, February 24, 2010 7:04 AM, MST

Last night was one of the most difficult for me emotionally so far. It just really hit me, how far away from my big girls I am, how isolating this place can be, how many procedures my baby will have to go through, how many times I am going to stand by her bedside helpless to relieve the pain she is feeling, the hunger that cannot be satisfied, the confusion she cannot possibly understand. As her mama, I want to pick her up and run far, far away. I just want to go home, be with all of my family, and make this whole thing disappear. No more beeping monitors, x-rays, tubes, needles.

And I know that it is so hard for my girls at home. They've never been away from me for so long, and they miss me. I miss them like crazy. But they cannot even come to visit me right now because of a nasty cough. Kevin and I chatted at 3am because he needs to take Liberty back to the Dr. She had a mild ear infection on Friday and was put on antibiotics

, but last night had a horrible hacking cough all night long even with medicine. I am really hoping that she can just get some nebulizer meds for our home nebulizer, and kick this cough to the curb. And I am praying specifically that no one else in our house catches what she has. When they are all healthy, they will finally be able to come into the NICU to visit Cassidy for the first time.

We were able to Skype with them the night before last when Kevin was still at the hospital. What a blessing technology is! They were able to feel like they were actually interacting with their baby sister for the first time, telling us what they wanted to see, ask us questions, etc. Hooray for Skype :)

Cassidy did finally get the PICC line placed, the whole thing took over four hours and four placement attempts. They actually made a little incision in the crease of her arm to be able to find a larger vein because all of her surface veins have been bruised and thrashed from iv attempts. The Dr thought she had a good vein but for some reason the PICC line would get stuck and just wouldn't go in far enough. She tried three times to make that vein work. Finally she and another fellow doctor reopened her arm, found yet another tiny vein (I saw it and it looks like a piece of thread) and managed to place the line in that vein and get it in far enough. They had to sedate her twice because the whole thing took so long, and it just broke my heart. But now that the line is in place, she should have a much easier time here, no more pokes and draws. There is a possible need for an extra iv to accommodate a blood transfusion.

I don't want to get my hopes up, but there is even the possibility that we could go home sooner than I thought, as long as she tolerates her feeds well. She will be off feeds through probably Tuesday if her scan from this morning is clear, and then we go from there.

Pray specifically that her GI tract will clear out and heal itself completely in the 7 days she will be off feeds. Pray that once we reintroduce feeds, she will tolerate them well. Pray that she will grow while on the TPN feeds she is getting through her iv. She was up 50 grams last night, and we have a goal of 2.5 kilos before surgery. I think she finally broke 1900 grams last night! Also, please pray for our family, that I can be strong for the girls, that they will get healthy, and that we will all have an abundance of patience throughout these trials and tribulations. We are so thankful for all of you who are keeping us in your prayers!

Transferred

Tuesday, February 23, 2010 3:29 PM, MST

We were transferred to the Denver Children's Hospital on Sunday night because Cassidy developed necrotizing enterocolitis, and with her heart condition, it could cause her to go downhill very quickly. So far she actually seems to be doing really well. She is pink as can be except where she has poor perfusion She is not really growing much but they did start her on lipids and proteins again last night via iv. She is supposed to have a central line put in today, and will be off feeds for 7 days minimum. Good thing I am already quite good friends with my pump! I actually have an incredible milk supply, and I am praying that I can keep it up because I have a feeling I am going to be pumping for a long while.

She had several more echocardiograms, and we have a better idea of just how her heart is configured. So if the need for immediate surgery should arise, we are already here and ready.

Please keep her in your prayers! Thanks!

She just a while ago had a nice spa treatment bath complete with warm towels and blankets, and then a head massage while we attempted to remove lots of tape from her head and two of the three IVs she'd had placed in her head. Her sweet hair was all covered in tape, and her nurse loving spent lots of time carefully removing the tape so that she would not lose all that hair. Thanks Mary Ann!!

In fact, Dr. Monika just came in to evaluate where she is going to place her PICC line, please pray that it goes in easily and quickly! I think it will be a blessing for her to no longer need to be poked and getting multiple IV lines placed into her teeny tiny veins. Pray that the whole procedure goes smoothly and that she tolerates it well. She will also be able to get better nutrition through the PICC. And pray that I will be a good strong mommy for her.

Born Brokenhearted on Valentine's Day

Sunday, February 21, 2010 7:51 AM, MST

---

So, its been several days since I have been able to update, and we've had quite the turn of circumstances since I last posted.

Cassidy is still in NICU, we've begun breastfeeding, and she is continuing to grow. All the things I thought I knew about having a baby in the NICU have been thrown out the window. Earlier this week, we were told Cassidy had a heart murmur, a common issue, but they were going to monitor it. The next day the murmur was much louder, and they ordered an echocardiogram. The echo took a long time, and there was much discussion, checking, and rechecking. No concrete information was given to me as the scan had to be read by someone, its now been screened on a big screen with lots of people looking at it.

It turns out that Cassidy was born with a very rare congenital heart defect called truncus arteriosus. She is going to need surgery soon to repair the defect and give her a properly functioning heart. Then she will need more surgery as she grows bigger.

Right now we are focusing on getting her to grow big and strong. I will post more when I get a chance, right now I have spent three different pumping sessions typing this out, and now I have to head back to the NICU to nurse my baby.

Thanks for the prayers and support!

Reposted

Tuesday, February 16, 2010 10:26 PM, MST

Reposted
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What an amazing day. . . Cassidy went off CPAP at midnight directly to room air, got the cannula with the lowest level of O2 around 7am just to help keep her O2 saturation up, had her first tubal feed at 11:30 am, another at 3:30 and 5:30. At 8:30 this evening, she had her 5mL of breastmilk by mouth through a bottle nipple!!! She is truly amazing. She still has a long way to go and a lot of growing to do, but what a blessing to see her making such great strides in such a short amount of time. Thank you for all your prayers!

Another post reposted . . .

Tuesday, February 16, 2010 4:24 PM, MST

Cassidy is now on a nasal cannula and a low amount of oxygen. We started tube feeds this afternoon with little 5ml bits of colostrum that I have been pumping since that first night. She digested her first little feed and has kept down her second feed. I am hoping to do some kangaroo care with her this evening. I put her to the breast as well, not to suckle, but just to smell and taste. It was so nice to just imagine the coming days of nursing instead of pump pump pumping.

Her nurse is saying that Cassidy will probably stay in the NICU until close to her due date of March 9th. I would love to have her home by my birthday, which is the 3rd of march! Maybe even sooner depending on how soon we can get her nursing round the clock and gaining weight! So, we are definitely in the NICU for the long haul, but I feel like she is progressing so quickly, that we may end up out of here even sooner.

It cracks me up that many things I sewed and knitted for Cassidy that I thought might be too tiny are going to be HUGE on her. Even the preemie outfits we bought are ginormous compared to our tiny little babe. Even more amazing is that she is 2 lbs heavier than my husband was when he was born, and I cannot imagine just how minuscule he must have been and what his mom must have felt.

If you would like to pray for us, we would appreciate prayers, specifically that she wll take to the nipple quickly and begin to gain weight very soon. Also pray that my body will recuperate from the c-section quickly and that I will get the rest I need to be an effective milk machine. And please remember our older girls in your prayers as well, they are all feeling quite a bit of stress and concern, and they are acting out just a bit. We are thankful for the Ronald McDonald House family room in our hospital, where they can play, visit, and get yummy snacks.

And now I am heading back to the NICU to feed my baby again!

Playing catch-up

Monday, February 15, 2010 6:19 PM, MST

I am just going to repost a few entries from a support group website, where I have already typed out basic information. These will not really be edited, and they will show our state of mind and such, pre-diagnos

is, etc.
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Cassidy Joy, our sweet little Valentine, has arrived

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I went in to triage around 1:30 yesterday because I still was having extremely reduced movement. Her heartrate was very flat until they put me on oxygen. Of course then they decided to do another biophysical profile right as she started moving up a storm. After the biophysical profile, she went back to not moving whatsoever and had a very flat heartrate even with me on 80% oxygen. My nurse was FABULOUS, and was very much trying to advocate for us to the on call dr. So we did a couple of tests to see how she tolerated life without me on oxygen, and she would have severe decels after every contraction. We were told it would probably be tomorrow morning that we'd welcome our little one. I was told I could eat and rest up.

I was put on a nasal cannula of oxygen and it stopped helping, so I was put back on the bag of O2. So we did another test to see what happened without O2. Within 8 minutes, Cassidy made it clear that she was not tolerating life in the uterus any longer. That was around 6:30. The dr came in, and we got all prepped for the section.

During the surgery (this is my fourth c-sec) I was noticing that it was taking an extra long time for them to get her out. Apparently, just as they were about to pull her out, I had a huge contraction that caused her to slip out of her position in my pelvis and ride into the very top of my uterus in a transverse position! My uterus clamped down on her, and they had to use a relaxer to be able to finally get her out feet first. My first breech baby

So, she had a bit of a rough entrance into the world, and has quite a few things working against her, but she seems to be a fighter and is already weaning off her O2 really quickly. They intubated her and gave her surfactant right away which really seems to be helping. She is on C-PAP right now at about 40% O2. (UPDATE 2/15 - Already down to 21% which is room air!) Her neonatalogist says she is doing very well. The first thing we have to do is get her off the CPAP and into just a cannula, or nothing at all. Then we can start working on feeding her and getting her nursing eventually. As much as I would love for her to come home at the same time as me, I am guessing now that it will be taking her an extra few days.

I am actually really at peace about the whole decision to get her birthed.

Oh, and now she is already on the bilirubin lights, and we will probably be bringing her home later this week.

I just wish I could be with her all the time, it breaks my heart that I am stuck in my room and she is stuck down there with all those wires and blue lights.