Sunday, January 23, 2011

So blessed

A little bit of sleep always helps me to have a better outlook. My last post was written in the early hours of the morning. I have been so tired and exhausted and of course that taints the way I see things. One of the comments I get most is how much people are impressed that I have shared everything about the experiences I have gone through. My last post, albeit whiney and complaining, was still part of that. Yes these things that I am complaining about are quite little things in the grand scheme of things, but it is still the way I feel. And I did think about making that last post. I just needed to get it out of my system. Perhaps I would have been better to just write it on a piece of paper that nobody would see. I had thought about that. But I figured if I shared it here, people would get a real sense of what this WHOLE experience is like. The roller coaster and ups and downs... the REAL experience of the good and bad.

Now, with that said, please don't think I am unaware of ungrateful for the many blessings that I do have in my life. I work to make certain every day while I go through some of the struggles and emotions to acknowledge and give thanks for the many amazing blessings.

I cannot tell you how grateful I am for all four of my little girls. I know how truly blessed I am. I really do. After Riley was born, my heart was changed forever. I used to wonder how people who lose their children could ever go on with life. Then I found out. There isn't a day that goes by that I don't let my girls know how much I love them.

I am simply amazed by Kiari. First, she was an utter surprise. And given the state of my ovaries when she was delivered, it was quite the miracle that I ever conceived in the first place. Then I dealt with the early contractions. With the simplicity of which my uterus opened when the doctor was delivering her, it is amazing that it held closed as long as it did. Then there was the Rh Antibody. It was SOOO strong and aggressive. God truly blessed me with knowing that something just wasn't quite right and gave me the courage to push it and we were able to save her life just in the nick of time. I was blessed with a pregnancy length long enough to resolve the hydrops that had formed. Babies born with hydrops really struggle and some don't make it. She could have easily been one of those babies simply due to the severity of her hydrops. By having the hydrops resolve inutero, it removed those challenges all together.

Because we were doing all the monitoring and testing, we were able to see the early signs of preeclampsia, and while not ideal, by delivering Kiari so early, I didn't suffer from my body going into preeclampsia. Then there is preemie Kiari. She is simply amazing. There was no PDA (hole in the heart) No lung issues, that weren't easily treatable anyway. No retinopathy of Prematurity (ROP.) She is growing like a weed. She is extremely healthy physically. Just a pokey eater.

I am grateful for the over abundance of milk I am able to produce. I hate that it will go to waste. I had checked into donating it, but becuase of the blood transfusions I am disqualified. My husband, and some of the nurses and I joke that I should make some "super foods." And sell it as a delicacy. :) HAHAHA Just think of the antioxidants and antibodies that are in that milk. HAHAHA

I am so grateful that my husband is smart and loves me. He works hard so that I can stay at home with our girls. He is very supportive of me in my artistic ventures and even encourages some of my quirky thoughts when it comes to tools and such. Heck, he just bought me a sand blaster for Christmas. :) You should see the studio he helped build. We are fortunate to be in the tough spot of having a house that needs to be sold. It is a beautiful home. We hope that someone else would like to have this beautiful home, but if not, we have been so blessed to have it and been able to do the things we have with it.

I am grateful for Riley. Right now we are headed in to the tween years and that is proving difficult, but what mother of a teenage girl hasn't been there? I know I put my mother through the wringer and I guess turn about is fair play. Even with all that said, Riley is amazing. She got me through some very difficult times when Kelsi passed away. She doesn't care much for Kate but she helps to make sure Kate is taken care of when I am sick or she knows I need sleep.

My family is so blessed to have Kate. Kate is the biggest ray of sunshine. She knows no malice and is full of love and happiness. Even if she is upset, she does it in such a cute way that it is still full of love. She is always happy, bouncy, dancey, singy and just a plain joy. Her facial expressions are hilarious. You always know her true feelings because she wears them on her shirtsleeve. She is full of life and spreads happienss and sunshine wherever she goes.

We were blessed with Kelsi. Like Kiari, she was quite the surprise. In fact, it was kind of interesting the parallels between Kelsi and Kiari's pregnancies. Kelsi was a tiny little miracle. She was born alive despite a very hostile environment inside of me. She was born screaming - which was amazing. She lived for 2 1/2 days despite her health issues. I honestly believe she did this for me. I asked her to wait for me when she was born. I think I knew all along we would lose her, and I wanted to make certain I was able to at least see her alive. But she did wait. She fought hard. I got to see her, talk to her, and when I reached in for the first time to touch her hand, she tightened her tiny hand to hold my finger. While her death was awful and hard, it too was a blessing. The life she would have lived would have been difficult and painful. Through her death, I have met some of the most amazing people and been involved in amazing events that bring hope and help to others.But most of all, she has helped me to see all of the really truly important blessings in my life.

I really one of those people that *seem* to have it all. But more than that, I AM one of the ones that DOES have it all. Yes my morning hours rant was full of small and petty complaints, but it is how I felt at the moment nonetheless. They are the true emotions of a mom going through the NICU. It is all just part of the roller coaster I guess. It is just so much more difficult to see how great life really is when you are currently on one of the lows of the roller coaster. Just wait until I make it to the top of one of the peaks again. :)

Thank you for letting me share and moreover, thank you for the notes and messages of love and encouragement. That is part of why I put my true feelings here. It is a cry for love, validation and support. I am grateful for this little outlet here too. I really do have it all, and I am grateful for the wonderful, blessed and privileged life I have. God has been better to me than I deserve.

Not so much progress...

Well, this week I was so hopeful for us going home really soon. I was so excited when they moved Kiari into an open air crib. She had a blood transfusion and those typically give her a lot of energy. I was really hoping that the new found energy would spark her hunger and desire to eat from a bottle. That has not happened. In fact, I find that she is still quite sleepy and will only make it through about 1/2 of her bottle before she is too tired to finish it. The rest is then fed to her through the NG tube. She hasn't had a full bottle feed in the last two days. Then to make matters worse, they increased her feed amount from 50 cc's to 55 cc's this morning. I just cried. If I can't even get her to get hungy enough to finish a bottle with 50 cc's, what hope do I have to get her to take 55? and true to form today, she didn't. :( I even had to leave the NICU before the last feed because I just couln't bare to watch her take another tube feed knowing that we are still so far from going home.

I tell people my frustrations and then everyone questions why they aren't doing things differently, why aren't I suggesting this or trying that. But when it comes down to it, I have never cared for a preemie before and these amazing people have and I know they know what they are doing and trust them. It is just so hard to be in the NICU still. We were originally told that if all goes well we would most likely be out of there in 5 - 6 weeks. And everything was going SOOOOO well. I really thought we would be home a week or two ago. Now we have been in there for 7 weeks and while I am sure the end is closer, it still isn't in sight. We are now looking at 8-9 weeks total,and that just kills me. I would be 37 weeks pregnant now if I were still pregnant. And actually, I would have never made it that far to begin with. my longest pregnancy was 37 weeks.

I am not sure I am functioning at a top level right now either. I am not sleeping. Even when I can, I don't/can't. Even now it is 1:30 am and here I am wide awake... tired, but awake. There is a lot on my plate right now. Garth is having surgery Monday morning. He is going to be pretty sore I am sure. The girls don't have school on Monday so I am going to need to find someone to watch them. My mom is flying in on Fridy night. I was really hoping that Kiari would be home already and that was the entire purpose of having her come out. My surgery is on the 1st of February. I hope Kiari doesn't decide to come home that day. That would be miserable. We need to get my house listed in just a couple of weeks and it is a WRECK! I don't have the energy to go through all the crap we have and declutter and organize and make things look nice. There is paint that needs to be touched up, there are pictures and things that need to be put up on the walls, drapes to hang, just to name a few. People tell me to rest and take it easy, but there aren't enough hours in the day to do it. Although I have to say, Right now I haven't been doing any of those things anyway, but I am still not exactly getting rest either.

I wish I had at least one more year here. But true to form for our lives and schedules, it always happens all at once. So really, I am not surprised. Just exhausted and frustrated.

It is reallly hard to have Kiari at the hospital and still try to keep my home life going. I feel bad for Riley and Kate. I feel like I am not being the best mom that I can be to them. Even when I am here, I don't feel like i am "here." But they have been troopers.

One other thing that has me pretty frustrated is that I really wanted to nurse Kiari. I worked hard with her to make certain that she could latch properly and get it. She was doing pretty well, but would get pretty tired after about 1/2 the feed. So they encouraged me to not nurse, but rather just pump and give her a bottle. So more than a week ago, I did just that. I stopped nursing and have been giving her a bottle, but I can't see that it has made ANY difference at all except to make it even more difficult to get her to nurse, if not impossible when I get her home. In the meantime, I am quite the producer of milk. I think even the cows would be envious of my abilities to produce milk. I am so efficient at it, it is actually quite embarrassing. I easily produce 3-6 times what Kiari needs. Our freezer is full, the freezer in the NICU has quite the stash and even one of the NICU doctors took some to put in her deep freeze when she found out I was beginning to dump it due to a lack of space. However, for the past week and a half, I have been dumping it again, because once again I am out of space. If you have a deep freezer, it can be stored for up to 12 months. But I don't and it will only be good for about 4 months. Well, at this point some of that milk is nearly 2 months old. So it seems that everything I have stored to this point will have to be dumped anyway. It is so frustrating to go through all of this work just to turn around and throw it all away anyhow.

I am pretty sure I am not one of those people who will pump and feed from the bottle. If I do that I will never leave my couch. There is too much to get done to just sit and pump and bottle feed the baby all day long.

Well, I am finally feeling tired and everything is just rambling on at this point anyway. I just needed to get some of it off of my shoulders. I just hope it is all over soon and she is here with us. At least I would have a really good reason for not sleeping and being so tired.

Friday, January 21, 2011

A Virtual Baby Shower Gift for Justine

Through my blog, I have been able to share my experiences, thoughts, feelings, fears and joy with all of you. From time to time, I will get responses both through my blog and through emails. My first experience with Justine was when I was complaining about how sick I was way back at the beginning of Kiari's pregnancy. She offered to send me some Ginger Carrot Muffins. I figured anything was worth a try and she was off to her kitchen to whip me up a batch. Justine has been so supportive of me as I found out that Kiari (AKA: Fruit Loops) needed blood transfusions and I dealt with the fears of preterm labor and the beginning stages of Preeclampsia. You might also remember that she is the one who sent me peppermint cupcakes that ended up having the perfect timing and was delivered on Kelsi's birthday.

Justine has obviously also touched many other lives through her own travels down the road of loss and infertility. She is a strong and very caring woman. I am so honored to have come across her blog, and even more, that she has reciprocated my efforts at getting to know her. Justine is due with her baby girl this next week. She is AMAZING. I mean, the woman is still running and working out. I have never even been pregnant as long as she has, let alone work out that far into the pregnancy. If you haven't already had the opportunity to stop by her blog, A Half Baked Life, take a moment to do it. She blogs about her life, but she also throws in recipes and pictures of tantalizing dishes that she makes.

One of her other blog friends at is throwing her a virtual shower. With this virtual shower, the goal is to shower Justine with with love and good wishes as she completes her pregnancy. 

Justine, in honor of your little girl my family will be saying prayers for a safe and healthy delivery. We pray for comfort and peace as you bring this little girl into the world. We pray for health of your new bundle of joy and that she may come home with you safe and sound. 

As an act of thanksgiving for the healthy and safe arrival of your little one, my girls will be performing 3 acts of service. I don't know what they are yet, but I will let you know when they are completed. 

Some advice for the transition of going from a home with one child to two would be to be sure that your oldest is involved with the care and some small tasks of his new little sister. I found also that my oldest needed a bit more attention from time to time. This could be some extra snuggle time with you and him, or a mommy/son night out while daddy is on diaper duty. But keeping him involved will help foster a sense of security and continued love. I know Riley still struggles with her younger sister and feels slighted as she had to share the attention. 

If you are looking for a good laugh when you are ready to pull out your hair, one that just might bring you to tears is Damn You AutoCorrect. However, I highly suggest that you don't attempt to read it in bed at night while your hubby is sleeping right next to you. Oh, and you may want to have a box of tissues. 

Some of my favorite books to read/listen to currently are the Chronicles of Narnia. I love that I can let my mind slip away in the magic of another world. I have the entire set on CD and have put it onto my mp3 player and can work away while listening to the stories. 

Justine, I am so glad I "met" you and I look forward to meeting you face to face one day. Thank you so much for your love, support and prayers that you have given me as I have gone through the complications of my pregnancy and struggles in the NICU. I really appreciate it. I pray that everything goes smoothly for you in the next couple of weeks and I cannot wait to hear of the arrival of your sweet baby girl. Congratulations and good job on coming this far!

Wednesday, January 19, 2011

Making Progress

Today Kiari received her 7th (3rd post-birth) blood transfusion. I was pretty sure we were getting close to needing another as I noticed she was looking pretty pale. Funny thing though, even at her palest, she is still far more pink than I am. Dang, I glow in the sunshine. Texas should be interesting. Hope everyone down there has a good pair of shades. haha
Pale Baby (she really is, even if the camera doesn't show it well)

Pink Baby - She looked the color of a cherry fruit loop (how fitting)

Monday was not a good night for me at all. We have now been in the nicu for more than 45 days. It is really getting to me. Monday she didn't take ANY bottles at all. Sunday I could not get her to nurse and I was so beyond frustrated. All she would do is bite me. And that didn't help my hormonal emotions either. I know it isn't meant to be, but again, the hormones get to me sometimes and it just felt like rejection. As I was getting ready on Monday night for another long night in the NICU, I Just cried as I did the dishes. I didn't have it in me. My husband suggested that I stay at home. STAY AT HOME?!?! but my baby is in the hospital. How does a mother stay at home? UNHEARD OF! But at the same time I was dreading going. I didn't want to be there. I didn't want to be angry with her for not eating. I didn't want to be upset about her lack of desire to nurse and bond with me. I didn't want to look at that stupid Isolet. So after many more tears I came to a decision that it was actually better to stay at home and cry than it would be to drive to the hospital, sit there and be upset and cry.
Mother and Baby Pendant

I haven't been in my studio in ages. I miss being in there. I miss being creative. So I spent the night in my studio with silver, gemstones and HAMMERS!!!! Oh how I have missed my hammers and tools. Yes, I am strange. But the result of the night was totally worth it. I figured if I wasn't going to spend the night in the NICU holding my baby I would create a pendant that depicted a mother holding a baby. It was very therapeutic and I felt so much better the next day when I returned to the NICU refreshed... a little. :)
Daddy on Diaper Duty (oh how I love a man that isn't afraid of a little dirty work)

She is doing really well. She weighs 6 1/2 pounds already. She is still not eating everything by mouth, so sadly, there is no hope of going home this week. *Sniff Sniff* However, we did make a great big leap today. After her transfusion and just before lunch, my sweet baby said goodbye to her warm and cozy isolet and HELLO OPEN AIR CRIB!!!! I was so excited. I didn't think they were going to move her into it until she took all feeds by mouth. And boy does that open crib look good on her. There was even mention of "next week." I am trying to not get my hopes up too high as I know it depends entirely on her and her eating habits.

Tonight I am home as my hubby is working and while I should be cleaning my house, I am sitting here on the computer. But this is so much more relaxing. Tomorrow I will regret it when a fellow artist drops by a fabulous new tool for me. Perhaps I will get up early and clean before she gets here.... then again, perhaps she will see the house of a family with a baby in the NICU. 

Monday, January 17, 2011


Wow, it has been a while since I did an update. Things have been busy. I feel like I haven't done hardly anything in ages. I go from the NICU to my house to the NICU to my house, over and over and over and over again.

School is back in session. The first day back I went to the NICU as usual around noon-ish and got home around midnight-ish. By the time I got home the girls were in bed and I realized that I hadn't even seen Riley that day and I only saw Kate for 20 minutes (from the time I got her up to the time she left for school.) That is NOT acceptable. So for the past two weeks I have changed my sleeping schedule. I go into the NICU around 8:30 pm and come home around 4:30 am. I sleep for a little bit until I get up to get Kate ready for school and out the door and then head back to sleep until about 1:00 in the afternoon (or at least I try to sleep.) I pick Kate up from school and spend a little time with the girls, get some dinner prepared and do it all over again. It is exhausting.
First Bath

Kiari is doing amazingly well. She is as healthy as can be. She is still in the NICU however. Friday she turned 6 weeks old and her weight is up to 6 pounds. She is packing on the weight. You can't even tell that she is a preemie. On January 3rd, (1 month birthday) she had  her second blood transfusion. She did pretty well, though it took three veins to complete the blood transfer. Poor little girl. She had her first eye exam and there is NO retinopathy of prematurity (ROP.) That was a huge blessing and the nurses were all amazed. We are truly grateful. We have not really run into any of the expected preemie issues. We are totally blessed!
Kiari got a new friend

She has started eating a little bit more. I have been working with her on nursing, and that is proving rather difficult. At this point, she has totally gone backwards and I am beginning to wonder if she will ever nurse. Yesterday was a good day for bottles. She took three. She has to be taking 8 feeds by mouth per day in order to come home. Right now she is only taking a couple. It is really frustrating. They won't move her into an open air crib until she has been doing the mouth feeds.
Chillin (Check out the foot)

In the meantime, I am pumping and producing more milk than I know what to do with. My freezer is full and there is so much at the  NICU. I have no idea what to do with it all when they send us home. It is a good problem to have, but a problem nonetheless.

We are constantly asked when she will be coming home. Today is day 45 in the NICU. I had hopes that she would be home last week. But here we still sit. It has been a rather emotional week for me. It is only being made harder with her refusing to nurse. I have just cried the last 3 days. There were a group of us that were pretty high risk and all due right around the same time. Of course I was the first to have a baby and a few others have already followed suit. The only difference is, they are now at home with their babies and I am not. It has been really hard to watch babies come into the NICU and leave and again, here we sit.

Next week my husband is having a surgery to remove his tonsils and fix a deviated septum. The following Tuesday (feb 1) I will be having surgery to repair a hole in my eardrum. I am almost positive that Kiari will be coming home right as we are about to do these surgeries. It will be interesting to balance recovery and a new baby at home. Luckily, I have a fabulous mother. She is flying back out to help me for a week. I felt awful asking her to take more time from work and help me, but I didn't know what else to do...or anyone I would rather have. I love having my mother here. She is a great help and it is nice to know that I don't have to worry about my kids.

My Girls
So, there are a lot of things going on and I am sure it will only get more crazy as we attempt to prepare our house for the housing market that refuses to budge. UGH! But we must move forward... Let the Great Purge begin. :)
Gifts for little Fruit Loops