October 27

Wow, I can’t believe October is almost over. I also can’t believe Kiran has been on this earth and in our hearts for over 10 weeks. And I hate that she isn’t in that bassinet with us in our bedroom. Today the NICU closed again just as I was going to sit down and feed her and that breaks my heart. I need to hold her, to be with her and for her to know how much I love her.

This has been the hardest time I’ve ever had in my entire life. But I know that she will be home soon and hopefully this horrible, dark and scary time will be a distant memory for me and my family.

I cannot believe how much this little less than 5 pound munchkin has endured already in her short life. She is so strong and right now my two girls are in my inspiration, my reason to go on every day. When I look into their faces, I know they both need me and that’s the greatest feeling in the world.

We got the news that Kiran may be coming home in less than two weeks a few days ago. I’m excited and scared at the same time. We still have so much to do in this house and so many things we still need to purchase for her and so much uncertainty ahead. Mom and I had a crash course in the NICU infant CPR class. Next week Mom, Parag and myself will be taking a regular CPR course at our local hospital in preparation for Kiran coming home. Alex is also going to be taking a sibling course, so we are excited to see how that goes.

We also have to learn how to work her apnea monitor which will monitor her and alert us if she stops breathing while she’s sleeping. And we have to learn how to administer her medicines. There is much ahead my mind is racing and I can’t sleep!

We have some crazy and hopefully fun days ahead with Halloween arriving on Saturday. We are going to try out our local not so scary haunted house with Alex. Alex has her Halloween parade at school Friday morning and we’re hoping that it cools down for at least one of these days since Alex chose the thickest costume for a Florida girl. Then on Saturday we have Jessica and Anthony’s Halloween party and we’re all looking forward to that!

Tomorrow I’m going to make a necklace out of Kiran’s picture of her in her Thing 2 costume so that Alex can wear it around her neck and they can match since they can’t be together this Halloween. Alex has been concerned that she won’t have any pictures of the two of them together and I assured her that there will be plenty once Kiran finally comes home.

October 28

What a crazy day we had! We attempted twice to see Kiran and the NICU was closed. The second time, they finally opened after we waited about half an hour and then we had to rush back and take Alex to the Halloween party at McDonalds.

Her Aunt Tara saved Alex from sweating to death in her Thing 1 costume by sending an adorable pink and black leopard outfit and Alex loves it. So she wore it tonight and will wear it on Halloween. Tomorrow she’ll wear the hot costume for her parade and to the not so scary local haunted house.

Kiran passed her carseat test, basically just slept the whole time. And we found out that she has gained a few grams, but is the same still in pounds and ounces, 4 pounds, 12 ounces and is a whopping 18 1/2 inches long! No wonder she looks so skinny.

And Little Miss Peanut we’ve discovered is a night owl. The night nurses love her. They’ve discovered she needs to have her hands out so she can express herself. And she is now waking up demanding food a half hour earlier. So now she is being fed every 2 1/2 hours. Yep, she gets her way! Now, we need to correct that night owl habit hopefully soon!

Tomorrow we will fill her stomach medications and learn how to give them to her. Now we’ve all taken the crash course in CPR at the hospital. All that is left to do is the medicine and learning how to work the apnea monitor that she will be attached to all the time at first. She has severe reflux and can choke on her own spit up. It’s really scary, but I know I’ll feel better with her being on the monitor.

Now I’m looking for bottles, and most importantly a swing. I’m getting recommendations from my girls from Two Week Wait. Don’t go there, it’s addicting and you’ll never leave ha ha! Trust me, I have probably about 2000 posts in umm 9 months? And after she’s home we’ll eventually invest in a playpen, bumbo, and bouncer.

And I’ve been trying to sell this gorilla costume I wound up with. It turns out that the company that sold me Alex’s Thing 1 costume messed up, and I wound up with this adult size gorilla costume! The funny thing is, I had no idea how many people would want it. So I’m hoping it’s out of this house by tomorrow and I make a little money.

I finally sold all of my maternity clothes. The girl was so nice and I said for her to let me know if she is having a girl, that way we can hand down Kiran’s clothes to her. I can’t believe I’ll never be pregnant again. Even though this last pregnancy almost killed me and brought Kiran into this world too early, I sometimes wish I could have another chance. But chances are, I wouldn’t have a normal pregnancy and I can’t risk my life. My two girls need me. And I need them. They fill my heart and they will fill my days and nights all the time for a long time.

Ok here are some new pics, and I’ll send a full album of all our Halloween activities when the weekend is over:

Alex riding the two wheeler by herself!

Mom has been waiting patiently to hold her when she comes home

NB two piece outfit and she rolled from back to side by herself

Holdling her own paci (miss show off lol)

Our sleeping angel (during the day)

Add a comment October 30, 2009

October 15-25, 2009

I was so angry this morning because when mom and I got there they were closed due to a new admit. I just can’t stand that they close so often and I can’t wait for Kiran to get out of that NICU and come home.

Well Parag came home a bit early tonight before going out and took me to the hospital and watched Alex out in the waiting room. So, I got to hold my peanut. And the doctor told me the best news in the world!

She is getting to stop the TPN  tonight, but they will leave the PICC line in for a while. AND she is starting on bolus feeds tomorrow!

October 16

Again, the NICU closed, and then thankfully I called about an hour later and they reopened.  So I ran over there.  There was no pleasing the princess today.  She was mad as a hatter!  Kiran had some gas after I kept changing her holding position, but she was still really cranky.  The bolus feeds started at five PM and her night nurse said she seemed much calmer after the first feed.  They are still feeding her by pump through her NG tube, but a whole ounce over an hour time, every three hours.  So far she is tolerating that fine.  The doctors are afraid to rush her.  Normal babies they like to see take a bottle within 30 minutes, and that might be too fast for her, since last time she had a bottle she sucked it down in 5 minutes!  So she has to take things slow with her belly and the pump will maybe teach her stomach how to work better in a longer period of time.

She is inching closer to the five pound mark at 4 pounds and 14 ounces!

October 18

Wow, what a crazy weekend!  Yesterday we went to Maddie’s party which was fun and the kids had a blast.  Then we came home and chilled out a little.  Then Alex and I got dressed up and we all went to the temple.  Then came back home and did fireworks.  Then this morning we went to breakfast with Marilynn, Phil and the kids at Sweet Tomatoes pajama party and it was so nice.  The kids has so much fun.  Then we saw Kiran at the hospital and Parag finally held her and she was asleep most of the time.  She looked great!  And then the three of us went to Lion Country Safari.  It was such a fun weekend, a weekend together that we’ve needed in a long time.

Now, news on Kiran.  She is at 4 pounds 14 ounces.  But the big news is that she had her first bottle today in over a month!  She drank 30 cc’s, an ounce of formula by bottle and after 30 minutes she fell fast asleep.  Guess her tummy was nice and full.  Then she got another 3cc’s by her NG tube.  Kiran will be getting a bottle now every other feeding so she doesn’t get too tired.  She has seemed so much happier and relaxed since she’s been getting more food and I’m so happy since that’s one step closer to her coming home!

I had some crying jags over the weekend because I just wished she could have been with us.  Alex was also sad at times too.  But she’ll be home soon.  All we can do is pray.

October 22

Kiran is doing great and loves her bottle.  Her doctors haven’t increased the amount and she is still on the already broken down formula.  She still gets the bottle just every other feed, so every 6 hrs, and in between is through her NG tube.  She lost 6 ounces from being off of the TPN and IV, but that is normal.  She gained 3 ounces back fairly quickly, but has stayed the same for 3 days now.  Hoping after this morning’s weigh in, that she has gained something. She’s tried out the NICU swing and likes it.  She is getting much more aware and every time I feed her, she stared into my eyes as if to think to herself, I think I know this person.  And her PICC line came out today yay! Parag also got to hold her and feed her the other day so they began bonding and it was beautiful.  He took her temperature, but I wound up changing the diaper ha ha, figures!

We’ve been trying to do family things together before Kiran gets home so that Alex doesn’t feel gypped in the attention department.  For the past three days she and I have been busy building a rocket ship out of recycled products for Family Science night tonight.  We had so much fun making it together and she was so proud of her work.  It is now on display at her school for a week.  We all had a blast at the event and came home happy and made it movie and popcorn night.

I tried on Kiran’s Thing 1 costume which was a tad big, but I got a great picture.  Hopefully I will get the prints early next week and I will make a necklace of the picture so Alex can wear it around her neck so she and her sister can match.  I hope that will help Alex have a better Halloween.  She was heartbroken when we told her Kiran would not be home in time for Halloween.

My Acura decided to give me a heart attack on the way to the hospital this week.  It most likely needs a new transmission.  You know the saying, when it rains, it pours.  We will bring in to a dealership tomorrow and see what they can figure out.  Then we are still dealing with the issue of not having health insurance and the hospital not knowing what they are doing.  Hopefully things should be sorted out next week.  Also, Kiran’s formula that she is on now and the GI doctor wants to keep her on indefinitely will cost about $200 a case of 4 cans, which will last less than 4 days!

We have been trying to get in touch with the doctor to see if we can find a better solution hopefully. It most likely is not covered by insurance, definitely not in our state, or the state from which we have the insurance- California.  Our state is not required to force the insurance companies to pay for baby formula even though it is medically necessary.  We are scared to bring her home on that formula, then try to switch her to something else that might make her sick and we’ll be right back where we started, in the hospital.  So, if this is what the doctor really recommends, we of course have to do it to keep our baby girl healthy.  We will figure it out.

Tomorrow we will go over Tara’s house to celebrate Maddie’s 4th birthday, and the kids will eat sweets and decorate pumpkins.  But before that we’ll stop to feed our little peanut.

October 23

Today Alex had her first allergic reaction which scared the wits out of me!  She was eating honey dew as Parag was cutting it.  Suddenly, her hands became itchy.  Right away I knew.  So I told her to stop eating as she was shoving one last huge piece in her mouth since she loves it so much lol.  Then her whole body got very itchy and her lips became a little swollen.  I gave her zyrtec which took much longer to kick in then Benadryl, but she eventually stopped itching as much and her lips went back to normal.  I gave her a dose of Benadryl a few hours later.

We also had a BAD visit with Kiran today. By the time we left the hospital to go to Maddie’s birthday party I was dead!

Earlier today, the feed 3 hrs before we came, she spit up a lot. So another nurse, not her nurse, gave her a good bath. Her hair looked so adorable, but I forgot the camera.

When we got there after she had the bath, almost an hr later, she was hypothermic. Stupid nurse had no clue because she was swaddled and doesn’t have a temp probe anymore.

She was 96.2 when I took her temp. We reswaddled her, put her hat and booties on, and flipped the gown sleeves over to cover her hands and that didn’t work. Then the other nurse had to get the warming light, take off her clothes. That got her temp back up 97.9.

Then I took her out and finished feeding her, burped her twice. Well she lost the entire feed! I felt so bad for her. So, she cleaned her up and changed again. As I was reswaddling her since her nurse was clueless, she spit up again right before her nurse decided to tilt the bed up so she would do it again.

And I found out later that her stupid nurse noted it down as a “wet burp”. Umm there’s a big difference between a wet burp and losing an entire feed. She didn’t even know how to turn the warming light on or swaddle Kiran!

Then the other nurse came over and helped reswaddle her and then we left as soon as she settled down and just fell asleep. Poor baby.

She isn’t gaining weight like she should. The nurse noted it and we’ll see what the doctor says tomorrow.

Kiran’s nurse this morning was so impressed at how she took the bottle, that she convinced the doctor to give her a bottle every feed and increased the amount to 37 cc’s. Obviously she isn’t ready for that so I’m hoping the doctor decreases the amount and see if that helps. They even left the NG tube out after she ripped it out herself lol.

The GI doctor refuses to try any other formula with her. So we will apply for WIC and they should cover the Neocate. Her health is the most important thing and we will get her what the doctor suggests even though we can’t afford it. I’m so afraid of giving her the wrong formula and she gets sick again. The nurse told us that she will be on this formula probably until she is 6 months old because her stomach is so darn sensitive.

So a little setback, hopefully she’ll have a better day tomorrow. Maybe she just needs to adjust to all bottle feedings and the increased amount, hopefully it’s nothing else. and we’ll see what the dr thinks. She weighs 4lb 11oz.

Tomorrow was her due date, so it will be a weird bittersweet day for me I guess who knows! I just wish someone in the NICU could say she might be coming home in a week or two. But then she has these bad days, and then I get doubts. Monday she would have been in the NICU 10 weeks. UGGH it’s so hard!

October 25

Yesterday was tough for me.  The nurse made her a birthday card though and that was sweet!  She has gained an ounce since she lost the weight and Kiran is doing great.  She yanked out her NG tube a couple days ago, and it’s stayed out since!  She is up to 40 cc’s of formula every 3 hours and is tolerating it much better with some minor spit ups.  She is still a cold baby.  One day she’ll realize she’s in Florida and shouldn’t be cold, but for now, we’ll layer her clothes and swaddle her in a few blankets and keep her hat and booties on.

We had a great visit with her today.  I took her temp, changed and fed her and held her for a while.  Then we took turns so I could watch Alex in the waiting room and Kiran stayed up with daddy for an hour!  Then when it was time for her next bottle, she didn’t even open her eyes.  She just opened up her mouth for the bottle, drank it all down, and went back to sleep.

The H1N1 vaccination is coming to Alex’s school soon and she will be getting it, and Parag and I will get it done at our doctors.  We need to do everything possible to protect peanut.  Alex has already gotten used to washing her hands and changing her clothes as soon as she comes home from school.

Here are some pics.  I also made an ALBUM; since we had such a fun, crazy past 10 days!

Grandma with Kiran

Alex's recyled project- a rocket ship blasting off

Look no NG tube!

Kiran's bunny suit from Marilynn and birthday card

The 3 of us at the pumpkin patch- minus one person : (

Add a comment October 26, 2009

October 11- 14 2009

Today, Kiran got to wear her 2nd set of clothes ever and Alex and I picked out a cute light pink outfit that is very thick so she wouldn’t be cold.

Her giraffe was moved to the other side of the NICU, away from the nurse’s desk since she isn’t considered critical care anymore. She is beginning to regulate her own temperature and might graduate to an open bed this week or next.

Since she started her pump feedings, she’s been having more bradycardias, drops in her heart rate.  The doctor says it’s normal and may be due to her not being used to having food in her belly.  Just think about how you feel when you have a very full belly, almost like you can’t breathe or feel sick.  Her belly needs a little time to get used to having food in her belly, although the amount of food she has in her belly is equivalent to take one bite of something every hour.  That’s how sensitive her digestive system is.

She is up to 5cc/hr on her pump feeds and she now weighs 4 pounds 11 ounces. I spoke to her doctor today and he said her feeding will be slow. First we have to make sure she tolerates the increased amount in the pump feeds. Then she graduates to syringe feeds, and then bottle feedings. So, she will definitely not be home this month.

Alex seems the most disappointed because she wanted her sister dressed as Thing 2 and she wanted to go Trick or Treating with her. So, I’m going to take lots of pictures of Kiran wearing her costume and print it out for Alex to carry with her on Halloween and for her parade at school.

Kiran is also getting physical therapy.  Basically, she went backwards.  She came out too early and she still had tons of room in my belly to move around, so she never got squished.  Now, most of the time she lies on her back or her side.  The physical therapist said that the babies needs to be squished in the belly because they are forced into the fetal position, which in turn makes them kick and punch against your belly and makes them stronger.  Kiran never had the chance to really do that.  So now when she is being held or getting physical therapy, we squish her legs in and that will strengthen her legs.  She is also getting stretching to her neck to make her neck stronger and not as floppy and delicate like now. In addition, she has a lazy right eye.  So the therapist pushes the eyelid down to see if she tries to open it and that should strengthen the eyelid and therefore give her more control of it.  Sometimes it opens with the left eye, but never all the way or not even at all.  And when it is opened, it doesn’t focus at all.  Her left eye does seem to focus much better.  She was actually staring into my eyes, my face tonight.  They said it is normal and should be something she will eventually grow out of.

Kiran will do things on her own time, and she cannot be rushed or we would be taking steps backward again and we don’t want that. As much as I’m dying to have her home this month, or by her due date of 10/24, I know it’s not possible.

She still has so many things to accomplish before they can even talk about her possibly coming home.

October 13

Yesterday, Marguerite her nurse gave her two baths and changed her into a cute outfit I brought from home and she looked adorable, except for the PICC line in her head.  I’m having so much fun dressing her in different outfits.  It makes it seem more now like she’s becoming a regular baby.

She has been doing well on her pump feedings and is now on 6cc/hr of formula.  Today she had a big day, but it got her cranky.  The first BIG news is that she is now officially in an open bed.  I think it will take some getting used to because now she can hear more noise around her.If she has clothes on, and is swaddled and covered with a blanket she is able to keep her temperature up.  The second not so good thing today was that her heart rate went low and she began showing signs of anemia since they’ve been taking blood still every day.  So, she had a transfusion which lasts several hours.  So, once again she got stuck and the IV was put in her foot.  By the time I got there tonight it was just finishing, but she was not happy.

The nurse was holding her when I came in because Kiran had been crying.  Then she handed her over to me and she was still unhappy.  Once the transfusion was done, the nurse disconnected it, but still had to leave the IV until tomorrow’s tests came back.  She wouldn’t even take the pacifier.  Finally, some spit up came up, and some gas came out, and once again she felt better finally.  The night nurse said she was sleeping peacefully and actually had to remove one blankets because Kiran had become toasty warm at 99.3 degrees!

I feel sad tonight because I see babies go home from her NICU all the time and from my mommy’s online board I’m a part of.  It just seems like it is taking her so long to get to where she has to be so we can take her home.  Babies who were born 10 weeks early have gone home and done better than her and it upsets me a little.  I know I need to be patient and it will happen in time.  But her due date is slowly approaching and it makes me more anxious.

All Kiran has known all her life is being poked with needles, and prodded, and her belly measured, and blood tests from her heels, transfusions, wires attached to her chest, and PICC lines in her head.  It makes my heart ache for her.  When I hold her, it is so hard to put her back down and have to go back home without her once again. And now she is getting older and realizes that when somebody comes near her, they might hurt her.

Today I put all my maternity clothes up for sale on Craigslist.  It hit me that I will never be pregnant again.  I am actually afraid to become pregnant again.  Every time I see Dr. Thompson, my OB, he reminds me that I almost died.  I was supposed to have my tubal ligation today, but because of insurance issues, it had to be cancelled.  We have an agreement with the hospital that they would pay the first three months of Cobra.  Yet the woman still had the check sitting on her desk yesterday for two weeks.  So, as of now, we are without insurance and I gave myself a migraine dealing with the women’s incompetence.  The check was mailed today, so hopefully we will have retroactive  insurance some time next week.  I wanted to get the surgery now and be healed by the time Kiran came home so I can take care of my girls.

I took Alex to the pumpkin patch near us and she had a good time.  We have a busy weekend coming up with Maddie’s birthday party and Diwali.  I’m looking forward to going to the temple again.  It’s been a long time.

October 14

Mom and I saw Kiran today and again she seemed unhappy, like she had gas.  Also, there is more light and more noise in that area so maybe she was just annoyed.  I’m not sure.  But, I hope she adjusts to her somewhat new surroundings soon so she can relax.  She wasting calories and energy by crying so much.

She is now 4 pounds 12 ounces and 17 3/4 inches long.  Also, at birth her Apgar scores were 7 and 8 and that means she was healthy at birth.

here’s some new pics

PICC line in her head

This is everything she is attached to, plus wires on her chest that show on the monitor

Just chilling out

Saying hi

Kiran's new open bed

2nd cute outfit from home, newborn size

Mom, I'm not happy

1 comment October 14, 2009

October 6 through 8, 2009 (the rollercoaster continues)

The rollercoaster week has continued. We’re now going onto week 2. Kiran has started showing signs that she is sick. We don’t know what it is. Her skin has become a bit splotchy, her temperature is a bit lower than normal even inside her Giraffe, she is a lot sleepier than she was before, and her cry is weaker. Also, when she wakes up you can tell that something is bothering her, that she’s in pain of some sort, but we have no idea where.  So far the pacifier has been helping her calm down and go right back to sleep.

So, I’ve been very worried. Luckily, the NICU staffs seems to be on top of things and she’s already been seen by a GI doctor and a surgeon.

Monday she had a test to rule out that her colon was fine, and it came back normal. Next, on Tuesday she is supposed to have a test to check for any blockage in her small intestine. It is called a pass through dye test in which they put dye through her NG tube and then do basically an X Ray of her small intestine. If that comes back normal, then the GI doctor will do a rectal biopsy to check for a narrowing in the rectum. I’m praying that they find something and get her fixed up so she can work on eating and getting ready to go home soon. It breaks my heart to see her looking so sick, like when she was first born, and so little and so helpless. Now, she barely holds my finger. She isn’t as alert as she was starting to become the week before. And it scares me too. She was due on October 24 and we were all hoping and praying that she would be coming home this month. Instead, my hopes are dimming that it will be possible. Alex asks every day because she remembers this is the month her sister should have been born.

Monday, Jessica drove me to the hospital and then we went for lunch afterwards and it was wonderful. I really needed another mommy to talk to and to just get out.

While I was passing the regular nursery, I bumped into Alex’s godmother who just became a grandma for the first time. I was very happy for her. But, it was so hard to look at that baby. When I see these perfect, normal sized babies and their families are elated beyond belief and they will go home in a few days with their moms and dads, it puts such an ache in my heart.

When the shades on the nursery windows are up, I try to walk past as quickly as possible. When they are closed, I breathe a sigh of relief that I don’t need to try not to look in at these big babies. They look so big to me compared to Kiran.

I feel more worried also and more anxious because I was just beginning to be able to do hold her and do kangaroo care.  Now she’s too sick and gets too cold to take out.  Now we can barely even open her portholes for too long.

10/7/09

My mother and I saw Kiran today and she looked tons better.  I also met with the doctor and he said that after the next two tests are done and they come back normal, they will start trying to feed her again.  I still don’t understand why she looked sick and didn’t act right for a few days and all the tests were negative.  I guess we’ll never know!  See how things change in a day.  The night nurse said Kiran was wide awake and kicking her feet and waiting for the party to begin.

She couldn’t have the next test today because she still needs to excrete the dye from the last test.  So she had a suppository and it worked, so she should have the next test Wednesday.

October 8, 2009

When I saw her this am she was back to her old self.  She was up for some time while I held her, I got her pirate look. She was just getting back from her first excursion out of the unit with her Nurse Wilma for her follow through dye test.  She was wearing a long sleeve shirt, with four blankets wrapped around her, and her hat on.  She looked like an eskimo.  It was so adorable!  We had a really nice visit. while I was holding her the iv blew, became occluded. I held her for a little bit longer and then they were going to change her iv so I left.

Then Parag went there tonight to see her and he spoke with the dr.  He told me that there was an incident that happened today and I was floored and angry.  Then I called and spoke to the doctor.  The doctor said that at 2:20 the person who was going to put in Kiran’s PICC line noticed that the TPN machine was reading 30cc/hr, and not 10cc/hr as per doctor’s orders.  So, ten minutes later the nurse tested her sugar and found it to be 275!  The doctor immediately sent her for a head sonogram looking for a brain bleed since high sugar can cause brain bleeds.  That result won’t be back until tomorrow.  Then they checked her sugar again and it was back down to normal of 75.

Not only did the TPN incident happen, but they had to try to do a picc line on her and that didn’t work. So she was stuck many times and the dr ordered cultures of her stool and blood to look for bacteria from all the needle sticks. . I spoke to the night nurse and she said she pooped, and Kiran woke up and was acting fine and went back to sleep. So, she seems ok. they will try to do the picc line again tomorrow. If that doesn’t work then they will get the surgeon to do a central line because either way she will be on TPN for a while. The dr also put her on antibiotics until the results come back. All the drs will meet tomorrow to decide what to do next. Most likely they will start her feeds slowly again and see how she tolerates them. If she doesn’t, they will do a rectal biopsy. uggh my poor little baby. I wish I could just lie by her bed all the time. This just breaks my heart.

Thursday 10/8/09

We met with her neonatologist and GI Doctor about what to do next.  The GI doctor wants to do a rectal biopsy to see if she has Hirschsprung’s Disease, which is basically a lack of ganglion cells in the colon, which affects the movement of where her food goes.

In the meantime they will start feeding her a basic, already digested formula called neocate through her NG tube 1cc/hr and see how she tolerates that. She will also be given reglan in case of reflux, and also a low dose of erythromycin which will help her move her food through her intestines better. If the rectal biopsy comes back fine, there is another more invasive test called a full thickness rectal biopsy where they check for pseudo obstruction of intestines, a rare condition with symptoms like those caused by a bowel obstruction, or blockage. But when the intestines are examined, no blockage is found. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines. They don’t want to do that until we see how she tolerates the small feeds and how the rectal biopsy comes back.

For now she does look good, but there basically has been no progression. Her bilirubin is rising because she’s been on TPN for too long and she needs to start feeding somehow. Her breathing is perfect and she hasn’t had any apnea episodes for many weeks.  She weighs 4 pounds and 6 ounces, and is 17 inches long.

They might also do a pelvic ultrasound to make sure they didn’t miss anything in that area.

Alex is doing wonderful in school.  We had a great meeting with the teacher today.  She is very smart and I’m teaching her carry over addition and multiplication.  We’re working on reading and number sentences also.

Here are some recent pictures:

Holding mommy's diamond ring, almost didn't give it back

Getting her first tortuous bath

Mommy and Kiran

Cutie pie

First trip out

Wearing clothes for the first time

Kiran loves mommy's finger

Kiran waking up so I can hold her, torture, I know lol

Nice and calm in mommy's arms

Most decorated Giraffe in the NICU

Alex's missing tooth grin and kooky pen sock

Alex's work at home, proof that she is indeed a Goel

1 comment October 8, 2009

October 2, 2009

Kiran will be 7 weeks old Monday, 37 weeks gestation, so almost a full term baby if she was still in my belly.

The doctors kept Kiran off of food for a week. In the meantime, they kept her on TPN (http://preemies.about.com/od/glossary/g/tpn.htm) . Then on Wednesday, they started giving her 3cc’s by syringe every 3 hours. Well after about two feedings, it was clear that she wasn’t tolerating even that.

She began having 3 to 4 cc’s of residual after each feeding, so they stopped her feedings by the time she was due for her third feeding. I was heartbroken. I thought, ok, maybe this is the start of one step closer to her going home. The crazy thing is that she has gained weight on the TPN and is now officially over 4 pounds!  She is also now back on the repogle, the tube that suctions anything out of her stomach since she was still having 3 to 6 cc’s of secretions left in her belly that shouldn’t be there.

So, now she is back on TPN and they’ve increased the amount of that. Kiran still cannot regulate her temperature, so she must remain in the giraffe (http://rideformiracles.wordpress.com/2009/04/08/ge-omni-giraffe-bed/) .

The wonderful thing is that today after almost two weeks, Kiran had a very kind nurse, and she let me hold her kangaroo style (http://www.prematurity.org/baby/kangaroo.html) and it felt heavenly. It was like we were getting reacquainted and she licked me one time and was sniffing me the rest of the time, it was so adorable and natural to me. And of course she grabbed my finger really hard and didn’t want to let go.

But, then it was time for her transfusion so the nurse had to put her back in and find a second IV site to put in, so we had to stop out for some time. When we came back, she had an IV in each arm poor baby.

I can always tell when she needs a transfusion now. She gets very lethargic. Now, she has begun moving around more and turning herself from being on her side to lying on her back. She is also more alert when she is awake and looks around a lot. Today, she was very sleepy and I knew even before the nurse told me that she needed one.

She has blood type AB positive. That means anyone with blood type O or her exact blood type can donate to her. The screening process takes about three days. And the blood bank can do the whole screening process and than send it to West Boca Medical Center to save for Kiran if she needs it. I’m AB positive so I cannot donate for her.

Kiran’s belly is also slightly distended, but the doctor said it’s nothing too remarkable. She may be put back on syringe feedings later tonight or tomorrow and possibly increase it to 6 cc’s. The doctor said if she doesn’t tolerate that, then they will do a special test on her on Monday, something like a colonoscopy where they put a scope up her butt and look at everything.

I just pray that she will tolerate her feedings, and hopefully she can graduate to pump feedings, then bottle feedings. In the meantime, I also pray that she begins to regulate her own temperature so she can graduate from the giraffe to a regular bed.

I was really hoping she would be home by her due date of October 24, but I am losing hope. Having a preemie in the NICU is a rollercoaster. Things can change in just one day. That’s why I’ve learned to take things day by day.

By 33 to 36 weeks, most preemies might be taking a bottle and doing wonderful at it. But, some preemies at this age may still have breathing difficulties and need assistance. Kiran is ahead in that aspect, but seems to have a gastrointestinal system that just isn’t ready for food. So, we have to take things slowly, step by step.

Alex finally got rid of her cold and is feeling better.  We have our first teacher conference next week and I’m sure she is doing great!  She is still a whiz at math and is doing double digit addition and subtraction, greater than and less than, and simple multiplication.  Her reading has also improved significantly.

here are some recent pictures:

New booties and new hat

Just leave me alone so I can sleep!

Getting her transfusion

5 comments October 2, 2009