Thursday, December 30, 2010

Kelsi's Birthday Surprise

6 years ago today at 11:15 AM my sweet little Kelsi made her appearance during an emergency c-section. She came out crying and shocked everyone in the operating room. My sweet little girl was the tiniest thing you have ever seen. There are a LOT of babies born at the hospital where she was born and she was one of the three smallest living babies ever born there. Sadly, none of them lived. Even though Kelsi's life was short, she has done so much good. It is through her I have met some of the most amazing people both through my own journey in grief and as I helped others through their journey.

Candy Cane Cupcakes by Justine
Every year we celebrate Kelsi's birthday with a party. Sometimes it is just our small family, other times we include special friends. This year we chose to celebrate as a family. Garth is working so the girls and I are having a girls night out. I offered to take them out to dinner and a movie, but they opted to stay in, make cupcakes and have a "theater night" with a movie and pop corn. We had decided to make cupcakes instead of a cake, because, as my girls put it, they will be small like Kelsi. :)

Riley and Kate having fun frosting the cupcakes

Last night I didn't sleep well at all. I got perhaps only 3 or 4 hours of sleep total. I spent only a couple of short hours at the NICU with Kiari. One of my nurses even remembered that today was Kelsi's birthday and came to tell me she was thinking of my angel today and my family. Awwwwww, totally brought tears to my eyes. But with all that said and the emotions involved, I was so tired and didn't know how I was going to make dinner and cup cakes. Well, as luck would have it, it was all taken care of.

A friend from our church brought us the most wonderful lasagna with a bunch of the fixings for dinner. And when she came to the door we found a rather large parcel on our front porch. It was addressed to me from a dear blogger friend, Justine (A Half Baked Life.) When I was still pregnant, I had had a dream where I was eating the yummiest candy cane cupcakes. I happened to mention it on my face book page and this sparked my culinary friend. Justine has the most fabulous blog where she posts about life and issues she has faced while trying to add more members to her family. And as an added bonus, with EVERY post, she also puts up the recipe and picture of a delicious dish she has made. There are a few that I am dying to try out as soon as I have my baby home and have a little bit more time to spend in the house.
All frosted, with some left over. YUM!

Well, as you might have guessed, inside this box was a batch of Candy Cane Cupcakes!!!!! IT WAS PERFECT. She sent a beautiful card and told me that had she lived close by, she would have delivered them all beautifully frosted. This is one time that I am glad she doesn't live close by. She sent a container of candy cane frosting and candy canes to go on top. It was, as I said, perfect. The girls and I frosted the cupcakes and while I am sure Justine will cringe at our non-culinary talent when it comes to making her creation beautiful, it allowed Riley and Kate and I to have a little bit of fun while talking and thinking about Kelsi. Once they were decorated, the hunt for candles began. Luckily, my neighbor two doors down had some for us to use. We sang Happy Birthday and we all blew the candles out. It was kind of fun to watch the smoke wisps hang and curl in the air.

Make a wish.

Watching the smoke wisps
Kate drew Kelsi a picture


Justine, thank you so much. Not only were they wonderful (Even better than in the dream), but the timing could not have been better. It was an answer to my prayers and just what I needed today. You are a special lady, and I am so glad I came across your blog a few months back.

It even has stripes
Happy Birthday Kelsi. There isn't a day that I don't think of you. Not a day passes where I don't miss you terribly. Every day the girls and I talk about you. Riley and Kate have already told Kiari all about you and before Kiari can talk, I am sure she will be well acquainted with you as well.

Today I spent a little bit of time with Kiari. In my last post, I had put up some pictures of Kelsi. It is almost eerie how much the two of them look alike. The biggest difference besides their size and coloring, is that Kelsi's head is round and Kiari's head is long like her daddy's. It is impossible to look at Kiari and not see Kelsi. Between Riley and Kiari, I will never have to wonder what Kelsi would have looked like.

Kiari got her first bling the other day. Okay, so it isn't really bling. I didn't want to put anything small that she could get into her mouth and have it be a problem. But she did get her first silver bracelet.

My First Bracelet
This bracelet fits my thumb pretty darn well. It is a little bit big for a thumb ring on me, but it won't fit over two fingertips side by side on my hands. It is really small. I will take a picture of it with a quarter to give you a better idea of how small it really is. When it is straight, it is only 2 1/2" long.

My First Christmas
Santa stopped by the NICU and left all the babies little outfits. I think one of the nurses told me that a NICU graduate family brings them in every year for the babies. I will have to remember that gesture in the future. It was really touching. This is Kiari in her out fit. It is small, a newborn size, but it still drowns Kiari. I had to roll the sleeves up three times just to get it above her wrists. But it is so stinking cute.

This picture was taken today. The room was dark and I used the lower resolution camera on my phone so it isn't great, but you can see how much she has changed. She is up to 4 lbs 12 oz today. She is getting some meat on her little bones, though her skin is still saggy and wrinkly. hahaha I had her on my chest yesterday and noticed that her rib cage was much larger than even just last week. She is now close to 18" long. She is growing fast. She still isn't eating by mouth, but we will start that next week. I have been working with her trying to get her to latch on. She is starting to get it, but it will take a while still. They say we still have another 2 - 4 weeks in the NICU.

Sunday, December 26, 2010

Grieving the past, Hope for the present and future

This week is always a really hard week for me anymore. 6 years ago this morning I woke up with a blood pressure of 170/110. I was 23 weeks pregnant with my second daughter, Kelsi. Nearly 5 1/2 months along and you couldn't even barely tell I was pregnant because she was so small that I hardly showed at all. Just like today, the day after Christmas was also a Sunday. This morning I learned that an online friend, who was due the same day as I was due with Kiari, has lost her baby. She too had preeclampsia and IUGR (intrauterine growth restriction), though I don't know if these are the contributing factors to her baby passing away.
My sweet Kelsi the day after she was born at 24 weeks. 13 oz 8 1/2" long

When I reached in, she took a hold of my finger and squeezed

Every year I sit in my hospital room in my head and relive the events from the last week of my sweet Kelsi's life. It is still so fresh and is hard to believe it happened "years" ago now. I have a journal that I wrote shortly after she passed away. I wanted to remember as much as I could about all the events that happened. Each year I read this at this time of year. Some people think I am nuts, but this is her week and it is all I have left of her. Even if all I feel is the pain of the week, at least I have something to feel. I don't know if that makes sense or not. Tomorrow is the day that I learned that she was not doing well and I would most likely be having a baby that week. Thursday is the morning that she was born, and Saturday is the day that we said goodbye. I am sure I will have more posts about this this week as I go through the emotions and memories once again.
My hand was almost as big as she was
Saying good bye to a sweet tiny angel

This year is bitter sweet. As I spent my hours last night in the NICU with my new miracle that is thriving beyond everyone's hopes and dreams, the thoughts of my previous NICU experience came flooding back. It is such a different experience this time around. While it is going unbelievably well, it is still hard. I have had a baby, yet, I do not have a baby. I have to drive across town to visit this beautiful little child that looks like my husband and daughters. She responds to my voice and holds my hand and cuddles into my neck where she falls into a deep sleep. This is a child that I love to pieces, yet, I return home and there are hints of a baby, but yet, no baby. It makes it all so surreal. I should be 33 weeks pregnant, not 3 weeks post partum.
4lbs 1oz
My favorite people in the whole wide world
My girls

A full quarter of my pregnancy was taken from me too early. And it was the last one, and that is now permanent. There is such a sense of loss, and at the same time, there is no loss. It is so hard to resolve all the feelings and emotions. I am so grateful that I no longer have to deal with any of the complications that I was dealing with. My doctor says he is pretty certain that Preeclampsia was set in motion and was the next step. With the way things were going, it wouldn't have been a mild case. I am so grateful that Kiari and I didn't have to suffer through any of that this time around. I am so blessed. Hundreds of people said prayers on our behalf and just look at the beautiful result. It is simply amazing to watch as this child of mine continues to develop as she would have in the womb, only this time we get to watch the progress each day. She has already changed so much and has even gained a full pound. She now weighs in at 4 pounds 7 ounces.
Kangaroo time with mom
Getting so big, yet still so small

Today, my heart is heavy for the missed memories of Kelsi and the new loss of my friends baby and at the same time it is filled with hope and love for my sweet Kiari sitting in the hospital at this moment waiting for her mom to return and hold her for hours as she listens to the beating of my heart. Such a range of emotions.
Just after a bath
Sleeping sweetie
Merry Christmas - This is a regular size stocking, not a large one. She is one of the only babies in the NICU that could actually fit into it. :)

Monday, December 13, 2010

This ride really stinks.

First off, I will say that Kiari is amazing! She is blowing the socks off of everyone with her rapid progress. Sadly, it doesn't change things in terms of when she will be coming home with us. We still have a goal date of the first or second week in January.
Opening the little eyes
Holding Daddy's fingers

 She is only on one little Bili Blanket for the jaundice. She is breathing without any oxygen, cannula or any help whatsoever. She had to have a blood transfusion yesterday and she did really well with that. Her hemoglobin levels dropped to 11.3 and after her transfusion it came up to 14.6. That was her first post birth transfusion. The last transfusion she had was 3 weeks ago. So that is really good. We thought for sure she would need one before now. She has done a great job with the jaundice and it is nice to have her on only one small light source. The doctor today said that we can hold her without the blanket. When we put her back into the isolette then she will need the blanket, but that is all. She is doing great with her weight. She is now up to 3 lbs 8 oz. She is starting to fill out a little bit and she has the cutest chubby cheeks. I wish she looked a bit more like me. I mean, I love her daddy and the way he looks, obviously, but I would like her to look a little more like me. She has my chin and over abundance of hair, but that is it. The rest is all her daddy. She looks JUST like Riley did when she was born.
Riley holding Kiari's Hand

She is up to an oz (30 cc's) per feeding now. She started out at only 10cc's, so she is coming right along. She is so stinking sweet. I went to the hospital with my husband this morning when he went in to work and I held her all day long. It was so hard to leave as she had just woken up and was looking around. I hate leaving her when she is awake and alert like that. It breaks my heart.
The first time I held Kiari

It actually breaks my heart to have her here already. I miss having her in my belly. I miss feeling her move around. I hate that I have to come home every night after spending only a few hours a day with her. It is really hard to have an empty belly and empty arms. I know it could be worse. She is doing so well. She is alive and thriving. I have been through worse. But this is still really hard. A bunch of my friends were all posting pictures of their bellies and it just breaks my heart that mine is empty and VERY flabby at the moment.
The last time I will hold a baby in my tummy - 29 weeks - an hour before Kiari was born

Right now my parents are in town to help out, and I am so glad that they are here. My mother is FABULOUS. She is always so good at helping out with whatever needs to be done. Today they put up the Christmas tree and started on Christmas Cookies. She is going to make some drapes to go with our bedding set for the nursery. She helps clean and most importantly, right now she is spending time with my girls. I feel guilty about leaving them here all day so I can spend time with Kiari, but it is a bit easier knowing that she is here to be with them. Next week will be hard when they are out of school and my parents are gone. How do you split your time between the hospital and your children that are here and still need you. Talk about massive mommy guilt.
Taken 12/13/10 - 10 days old
My Tiny Girl

I am so glad to be done with the complications of this pregnancy. It was always so hard to know that I had all these issues looming overhead. But I am so sorry to be done with the pregnancy. It was my last and I feel like some of the best parts of the pregnancy were taken from me before I got to really enjoy them. Most of all, my baby was taken out before she got the benefits of maturing in the way she was supposed to. Granted, my body provided a fairly hostile environment for her. So sad. That just isn't the way things were meant to be.
She is holding my 4-year-olds finger

I just don't care for the whole NICU experience. :(

First family photo

Daddy's Girls

Monday, December 6, 2010

Update on us

first, I would like to say thank you to all of your well wishes and prayers. Something is working, so please keep them coming.

All of this still seems so surreal. I am still sporting a pretty good sized belly. I hate that part. ;) It is strange to have it be so flabby and still so swollen. They gave me this great big binder to wrap around me and that certainly helps it to feel better. I am really sore, not from the c-section itself, but rather from the tubal ligation and other things they did while they were in there. too bad they couldn't do a tummy tuck while he was at it. ;) HA! That would be a great gift. Oh well, guess I will just have to do it the old fashioned way.

Things are going rather well. Kiari is doing super! Her bilirubin had started to rise really fast and they are being very aggressive with her treatment when it comes to that. They are doing what it is called triple phototherapy. This means that she is COVERED in lights. THey have two large banks of lights and the biliblanket going. But she is responding well... thank goodness. At one point her level was an 8. While that doesn't seem that high, they said because she is so small and early, it is like a newborn having a level around 15+. They said if it remained an 8 or went up then they would transfer her to Children's hospital. Luckily it came down, ever so slightly. Enough that they were comfortable keeping her here. It could still change at any ponit if her levels go up.

Today they are going to place a PICC line. This will replace all the IV sites she has had. She keeps blowing her veins. The PICC line should eliminate this. I hope so. They blew two of my veins trying to get my IV in for the transfusion that didn't happen and they still hurt. But my little girl is being a trooper.

Yesterday I got to spend a little bit of time in Heaven. I was talking with the doctor about the plan for treatment as we get closer to the time where we are going to need to do a transfusion on her and such. I haven't been able to hold her at all to that point for a couple of reasons. First, she wasn't able to tolerate too much stimulation. It would make her Oxygen sats go way down. And then she also really needed to be under the lights as much as we can get her. So I asked the doctor if I could hold her yet or if she would still recommend that I wait. I asked if I could hold someone elses baby if I couldn't hold my own. My arms are just aching to hold a baby. So later in the day I was able to do what is called kangaroo care. This is where the mother and baby have skin to skin contact. she was really agitated as we moved her as I am sure it wasn't very comfortable. But as soon as they put her on my chest, she snuggled right in and calmed down. It was literally heaven for 25 minutes. I don't know if I will get to hold her again today or not, but I could use a little bit of that heaven once again.

She loves to suck on her pacifier. She is the only one of my children that has ever liked that. I remember we tried to give one to Riley when she was first born and she spit that thing out so hard that she literally cleared her feet. It was funny. Riley preferred her thumb. Kate never took a paci either, but we didn't let her suck her thumb as we didn't want to have to go through the process of breaking the habit again.

The hormones are starting to kick in as is the realization of all that has happened. I have to try very hard to not think about certain things or the waterworks begin. And boy do they flow. I have to go home tomorrow and it is going to be an awful day when I do. Even typing that got me crying. It is so hard to leave the hospital without your baby. I know this time it is different. Kiari is still alive and waiting for me, but it is still awful to think about going home with an empty tummy and arms. But if you think about it, it is kind of good that she isn't coming home with us. We don't have AnYTHING for her. No diapers, no crib, no clothing, NOTHING. So it will at least give us some time to get things ready. Not that it makes any of this any easier.

I think my milk is FINALLY starting to come in. Though, it still isn't enough to feed her. But every little bit helps. Right now I use these little swabs to collect what I can and then we place the swab in her mouth. I usually will rub the swab around and then let her suck on it for a little bit. This helps to still provide her with some antibodies and good nutrients. Hopefully things will start to pick up here today and tomorrow. Right now she is on Donor milk. I am so grateful for people who have taken the time to do that so that babies like mine can benefit from it. People we have no idea about have really helped us along this time from blood transfusions to donor milk. I am so glad that there are people out there that do things like this.

I am not sure if there is anything else to update or not. My memory isn't working as well as I would like it to right now.

So for now, thank you again for your prayers. I have put some pictures up on my facebook page. I can't get any images to post on my blogs from my ipad, so I will have to do some of that when I get home tomorrow.

Saturday, December 4, 2010

I had a baby... 10 weeks early

Well, yesterday was a whirlwind experience. My husband and I got to the Akron City Hospital about 1:30 yesterday afternoon. We still didn't know if we were going to be delivering that day or not. We spoke with one of the doctors here and he spoke with my doctor and it sounded like they were going to keep me and observe me for a little while. As soon as any of the labs came back funky or we noticed anything strange going on with the baby then we would deliver her.

So I was getting my labs drawn and getting ready to order something to eat when the doctor came back in and said my doc was on his way and we were going to deliver the baby then. OH MY GOODNESS!!!!! I can't say that I totally panicked because I had the entire trip up from Columbus to Akron to think about things and prepare myself for the fact that I was about to have a baby at 30 weeks.

My Doc had spoken with the Neonatologists and decided that it would just be best to get her out and continue her care outside the womb. As nervous as I was, I was also relieved. I am so glad to be done with this pregnancy. Like I said before, I always just felt like I was sitting at the top of a slipper slope and it was so hard not knowing when you were going to go down.

When I got into the OR I tried to remain calm. All the while, i was having flash backs to my delivery with Kelsi. However, I still felt confident that things would go okay with her. At one point, when they were placing the spinal, I did have a moment of frantic prayer asking my Father in Heaven to please please please let everything be okay with my baby and myself. I have already shown that I play against the odds in these circumstances and I don't want to be one that dies during a routine c-section. Morbid, I Know, but it is what it is.

I must say that having a c-section with a spinal is not exactly comfortable. I could still feel things, though they didn't hurt, they were quite uncomfortable. My doctor got the baby out and she cried right away. Quite quickly he held her over the draping so that I could see her. She was so small. Not nearly as small as Kelsi, but tiny nonetheless. The Neonatologist wisked my baby away into the next room where they cleaned her up and got her all prepared. Garth came back in to tell me that she was born at 4:38 PM weighing in at 3 pounds 7 ounces. She measured 16" long. She was a very big girl for being 29w 6d along. I missed my goal of 30 weeks by just hours. :)

Once she was out, the real work for my doctor began. He worked on me to perform a tubal ligation and the normal clean up from a c-section. Interestingly my ovaries were in quite the condition. I guess my left ovary was about the size of a grapefruit, at least. It was FULL of large cysts. My right ovary was quite small, but also covered in cysts. So I now have the official diagnosis of what I had always suspected, Poly Cystic Ovary Syndrome (PCOS). I had always suspected it because I have had the symptoms for ever. But it had never been confirmed until now.

I was taken to recovery for a couple of hours and just before they took me to my room they wheeled me in to see Kiari. She was so stinking cute...from what i could see of her. She had been intubated to help her breath. Nice thing was that she was on room air and the vent was only there to help support her own breathing efforts. When I reached in to hold her hand, she took my finger and gripped it nicely. I love holding her little hand. She has the cutest and most perfect fingers and toes. She is most certainly my child as her feet are long and skinny. Just like all three of her sisters before her. HAHAHAHAHA

The first night of recovery for me was difficult. They had me up 8 hours after the surgery. That was pretty painful, but worth every bit of it as we went over to see my sweet baby once again. She was still doing great. Her bilirubin levels had gone up slightly, but nothing that we were concerned with at that point. Other than that, she was hangining in there. I didn't get much sleep last night due to the pain of the surgery and just not being able to sleep. I slept for short periods of time and went back in to see Kiari early this morning. Nothing much had changed with her, so that was a relief.

Today has been pretty good. I am working really hard at getting my systems back to functioning, which has always been difficult for me after my c-sections. I finally got to shower, a dream after having surgery. I always love feeling nice and clean again after surgeries. My girls came over this morning and were so excited to see the baby. They got to spend about 15 minutes with her before they had to leave due to Riley having a swim meet today. But they came back in tonight to see her again.

They have removed her from the ventilator and placed a nasal cannula. Her Bilirubin levels had gone up a bit and they were preparing to send her to Children's Hospital. They said that if they ran it again and it hadn't changed or gone up she would be transfered. Luckily they went down a little bit, but dang that baby of mine is glowing blue!!! Lots and lots of lights. I was able to get some pictures of her while they had everything off of her face while removing the breathing tube and placing the nasal cannula. I got some pictures too, however, I am not able to upload them yet. I will as soon as I get home. She looks just like her daddy. Not that it surprises me at all. In one of her ultrasounds, I could see that she looked just like him.

The docs and nurses are amazed with her. She really truly is a fighter, but we already knew that with all that she has been through to this point. The neonatolgist was talking with me today about all that she had been through and said, she is just truly a miracle. She also gave me big kudos for picking up on the change in movement at 24 weeks. She just looked at me and said, you know you saved her life. I am so glad that I was given the gift of noticing her movements and knowing something was wrong. I was so blessed!!!

For now, Kiari is still here in the hospital with me. But that can change at any moment as she is still fighting against the antibodies and such. But I will enjoy my visists with her tonight as I wake to pump milk and take what few drops I get over to her. Now that they have removed the vent, she can cry and it is the cutest little cry. I am totally smitten with my tiny little girl. I am really excited to get to know this feisty little girl that has come to my family.

We are nowhere near out of the woods, yet again, but I am so glad she is here, alive, safe and sound at last. Now the next roller coast ride begins. Thank you all so much for your love, support and prayers. I truly believe they have made all the difference in this difficult pregnancy. Please continue to send them now to my little girl that she might overcome the challenges that lay ahead.

Friday, December 3, 2010

Well, that didn't go so well.

I am still sitting here in Columbus waiting for my husband to get here.we couldn't do the transfusion today because my amniotic fluid has gone away. We have no idea what has happened. So as soon as my hubby arrives, I will be returning to Akron where we will deliver Kiari. I don't know if we will do it today or not, but it will most likely happen before Sunday.

She is looking fabulous. She weighed in at 3 lbs 11 oz on the ultrasound this morning and I had the steroid shots just 2 weeks ago, so we have a couple of things on our side. I will only be 30 weeks tomorrow. I am really scared.

I will try to keep things updated as much as possible. I could really use your prayers and good thoughts.