Parag and I spend the whole Thanksgiving morning with her while mom came here and began cooking the Thanksgiving dinner.

The night before, we found out that Kiran was vomiting blood. When we came in, I cried, I lost it. It made me so sad to see her back on IV’s and TPN when she has just come of it the day before and she was again NPO.

While we were there, the doctor decided to begin giving her food since she had stopped vomiting and he figured that it was from her severe acid reflux and to give her zantac and reglan again.  They started her on 10cc’s.  After the next feeding, she continued to scream, so the doctor was sitting close to her at the desk, and he said ok, give her more.  And she passed right out after more food.  Those two meds were stopped when the TPN was stopped the day before to “test” her. Obviously her tummy is not ready to be tested without reflux medication. All she did was scream almost the whole time we were with her. Then when she was allowed the 10cc’s of her old formula Neocate, she was in heaven. She could have eaten more, but she is so sensitive that feeds have to start back slowly with her.

Today, she had her favorite nurse Marguerite and she brought in a dresser for her clothes and a TV that plays videotapes like Cinderella and Lion King. Wasn’t that the sweetest thing to do? So take a look at her set up. I told Marguerite that if she keeps doing this Kiran won’t want to go home. I brought in some nice turkey day leftovers for her lunch and she really appreciated it.

This morning mom and I went in the morning to see Kiran and she looked much better, just really skinny. She is now under 5 pounds and 20 inches long! The doctor is considering her malnourished since she doesn’t have any fat to keep her warm enough. So she is still under the warmer almost all the time. When she comes out to eat, she is wrapped in at least two blankets.

The first movie she watched was Lion King.

This afternoon all 3 of us went to the park and had a great time. I ran a bunch chasing after Alex on her two wheel bike. Wow, she’s fast!

Then we went to the hospital and Alex got to peak in the window and see her sister for the first time in a couple of months, since the NICU changed the rules. Marguerite disconnected Kiran from her monitors for a few minutes and brought her over to the window. It was a beautiful moment in time. Kiran was wrapped in a blanket and her hand was up as if to say “hi, I’m here sis”.

Also, the TPN and IV’s were all stopped today and I hope this will be the last time she needs any of that if she keeps tolerating her feeds.

I just keep praying that she starts putting weight on soon and she can come home. I feel like I’ve missed the first 3 months of her life and I don’t want to miss much more. I am asking the nurses to take pictures when they can when Kiran does something cute or funny because I can’t stand missing anything else. Marguerite took a cute one of her today watching a movie for the first time ever and it was adorable.

So, we are hanging in there and just waiting for that day. Please continue your prayers for her also. Thank you!

Here are some new pics:

Thanksgiving 10PM, Alex is the only child up?

She has a good grip, bet she can beat anyone thumb wrestling

Ok, I'm up. I don't see the food, Dr, do you hear me screaming?

Her NICU set up, yes, she's the princess

Stretching, getting ready for more food

the Princess close up

Kiran watching TV for the first time, well listening sort of

Also, they put in an NG tube since she pulled out the NJ tube and they wanted to see how this worked and it was working wonderfully. She was slowly weaned off of the TPN and lipids and today her NG tube was removed because she was taking a 40cc bottle of formula at every feed and doing great, just a little spit up here and there.

The past couple of days she has been having trouble regulating her temperature once again hovering between 97.6 and 97.8 with clothes on and wrapped in blankets. The nurses started putting the bed warmer back on and she seemed to be doing better with her temperature.

The past two days have been crazy since the NICU has been very busy and closing a lot and yesterday we had to make two attempts to see her and after many tears, I was finally able to get in there and hold her and feed her. Parag also got to hold her so we had a great visit.

Tonight, Parag and I went back with Alex. I changed her and she spit up a bunch as I was doing that. So, I had to change her outfit again, this time a cute greet one with a matching hat.

While I was feeding her, she drank down the bottle in her usual 7 minutes flat and got her two burps out. The first burp some mucous and one brown spot came up with it and I called the nurse’s attention to it.

Well, just now when I called the nurse said she’s been vomiting basically since she came on at 7:30. I fed her at 5:30PM and there is old blood coming up too. So, she is NPO once again and the repogle has been put back in.

I am so sad and down to hear this news the day before a holiday where you’re supposed to be with your family, your whole family. It breaks my heart so much to hear this news.

I pray tomorrow we get some answers of why our baby is so sick and why isn’t she getting better so she can see the joys of our family and our home.

Yesterday was Kiran’s 100th day in the NICU. It was a really weird day for all of us because it was also Parag and mine’s second wedding anniversary. I just don’t feel like celebrating much. We went to see Kiran together and dropped Alex off at Marilynn’s house. So we spent some time together and hopefully one of these days we can actually have a regular date like dinner and a movie.

I want to take this time to thank people who have really been there for us. You know who you are. Thank you for all the kind words and offers of help, and some easy meals. Some nights I’m just too tired to cook or clean and just want to go to bed. It’s tough. It’s been the roughest last 101 days in our lives. Our whole family has been affected by it.

I’m going to post this and maybe it might help us a little bit more. I feel that sometimes people just don’t know what to say or do for someone who has a preemie baby in the NICU.

Survival Guide for the Friends and Families of NICU Parents.

This is just a quick brainstorming of ideas, not intended as a comprehensive guide though I may develop it more over time. As someone a little over 3 weeks into this rollercoaster ride I know there are a few things I appreciate from friends and family wanting to help.

- Frozen meals are one of the best helps, ideally in individual microwavable servings, good meals primarily for lunches. Something good and filling, your friend probably isn’t thinking too much about their diet (other than guilt tripping themselves occasionally). Giving them meals saves them eating expensive junk from the hospital.
- Lifts to and from the hospital without the expectation of seeing the baby if your friend needed to have a c-section, NICU’s often limit visitors.
- It feels a little awkward giving people money sometimes, but a donation towards petrol money or breast pump hiring can make a significant difference. If the baby was born prematurely the family may have been unprepared for the amount of leave they’d need to take so finances can be rather scary. And babies with disabilities often need a lot of extra help with equipment set up.

- Small amounts of social contact on their timetable, keep in mind that time is a bizarre concept when you’re not working and you’re spending so much time in the NICU. It’ll most likely be you making an invitation of “Do you feel up to coming over for dinner tonight? I don’t mind if you have to cancel at the last minute.” Thinking more than a couple of days in advance is a serious challenge, but they’ll need support to stay connected to their community and the real world. Burn-out is a serious risk.
- See if you can give them a night out as a couple to assert their relationship beyond being in NICU, or invite them to a small scale party where they aren’t the focus and they don’t necessarily have to entertain or repeat their story thirty times.

- Little text messages and emails to see how they’re going and tell them you’re thinking of them. Phone calls mean verbalising the same news over and over which gets exhausting. Text messages mean they can reply when they have time and energy for it. With their permission, forward on the baby’s and the parents’ progress on to others who are curious, and pass back well-wishes.
- Make something special of the photos they’ve been taking, like a web-based scrapbook or website where you can update where the baby is at for them so they can just direct family and friends to look at the website. If they don’t have a digital camera, see if you can find someone to loan them one or pool together with other friends to buy them one. Those photos will become precious treasures.
- Do your own research on conditions the child develops so they’re not having to answer the same questions over and over, and try to become a little familiar with the terminology and equipment used. If you do put together a webpage, put links to medical websites or summaries of the conditions to help others understand what’s happening.

- Help them celebrate the milestones, it’s so important to share and make a big deal of every little positive you can find with them.
- Offer to clean the bathroom or the kitchen for them. Asking what you can do to help is a little too broad and overwhelming. Offering something specific they can just agree to is so much more helpful.
- Give them something special and meaningful as a present to them. Let your friendship with them dictate what you give them, but it’s important to acknowledge them as a living human, not just a parent.

- Keep in mind this is a long term journey for them, they could be in hospital for a very long time. And it doesn’t end once they leave hospital. Touch base after the rush of everyone wanting to meet the new baby and wanting to see the new baby once they get home.
- If they seem to need space, give it to them, and see if you can help maintain their breathing space too by asking others to hold off on visiting just yet.
- Call before visiting, and be understanding if they refuse.
- Understand that if the baby is in intensive care then visitors will probably be severely restricted, probably just to the parents, siblings and maybe grandparents.
- If the family already has children, babysitting is always welcome as it allows both parents to visit their new baby together without worrying about an underfoot bored toddler playing havoc with the electrical cables and monitors.

- For all the complications, these parents will love their baby, help them celebrate the birth in a positive way, especially if it was traumatic. Put a birth announcement in the newspaper, make cards with photos to send out to share the joy at the baby arriving. It’s easy to get lost in the equipment and medical terminology and problems, anything to help them focus on the positives is important. Ask them for the precious stories of what their baby does to help step them out of the medical side of things and love their baby.
- Ask them what they need. There’s likely something I’ve missed here and every baby and family is unique, their needs will be utterly unique too.

This is a traumatic time for everyone involved, and it’s the little things that make a difference.

One thing that I’ve been doing the past several weeks is spending more time with Alex and I’m really enjoying it. I feel like I am getting to know her all over again and I am also seeing the anger in her. She is angry at not being able to see her sister and angry that she isn’t home yet and that they haven’t had any pictures taken together.

I was hoping to take the girls’ Christmas pictures soon. I have 3 Christmas outfits for Kiran and I was hoping to take some nice ones in the hospital. I was going to take a nice one of Alex outside in her Christmas dress and upload their separate pictures and put them on one card. I was just going to do that in the next few days since Kiran seemed to be doing so much better and the tubes were starting to come out.

so I will keep you all updated as we hear more and I hope you all have a happy Thanksgiving.

Kiran propped up in her boppy looking at her surroundings

Kiran enjoying her warmer too much

Kiran listening to what daddy has to say

Asleep after a full belly on daddy's lap

Feeding her for the 1st time in 3 weeks

Loving her boppy again

Her matching green outfit, a little big at size 0-3 months, but cute anyway lol

She began vomiting up blood and mucous about 5 days ago so they put her NPO and put the repogle back in. It was pulling out tons of secretions. The doctors thought it could be gastritis, or possibly an ulcer. Now, since the secretions were down to almost nothing yesterday, that have chalked it all up to post surgery stress to the stomach. I think that is quite an interesting diagnosis, but at least she is doing better.

She had a PICC line put in. Two days ago, I held her and hours later the PICC line began leaking. So the nurses blamed me and refused to let me hold her. After pleading with the doctor and the nurses that she needs to be held, since she is a preemie and a baby and how will she know we love her and how can we calm her down if we can’t hold her, I was finally allowed to hold her today. The nurse changed her diaper, and swaddled her up and placed her in my arms. I was not allowed to move or put her back in her bed unless the nurse was there.

I’m exhausted from seeing everything Kiran has been through and worrying and trying to get information from the doctors and nurses is like pulling teeth. I finally got to speak to one of her doctors last night at around 10:30PM and spoke to him for about 1/2 an hour and got some answers.

She is still on a 10 day dose of two antibiotics to treat the serratia that was found in her trachea once she was taken off of the ventilator after the surgery and for the bacteria that was found in her urinary tract.

She is finally back on pump feeds at 1cc/hr and we are waiting to see how she tolerates that. It is through an NJ tube (which bypasses her stomach) and also the formula was changed to a higher fat/higher calorie one.

The main focus right now is to get her off of the IV fluids and TPN and get some weight on her and to eradicate the two infections.  The TPN has caused her to turn slightly yellow and for her liver functions and bilirubin to go up.  Once she is back on food and off of the TPN, that should all go back to normal.

I am nervous about what will happen when she is put back on full feeds and then they begin testing her stomach. I pray that it will not get her back to square one and IV fluids again.

This has been a long, long road and I pray that it will be over soon and she will be home.

In addition to all of that, they found that she had an old fracture in the middle of her left clavicle. Nobody is telling us much of anything. One doctor explained that a preemie’s bones are thin and very fragile, and that these fractures can happen at any time. But, why they are just noticing this now is beyond my understanding. She’s had many KUB’s (abdominal X rays done) and in preemies, their bodies are so tiny, you can basically see up to their necks in these X rays. So, I believe that there was a chance to see this break much earlier.

Some things are just not adding up in this NICU and I am beginning to get more stressed out. I am trying to take things day by day and not stress myself out too much, but it’s difficult when you are told you can’t hold your child, or that your child cannot eat, but they don’t know what is causing your child to vomit old blood.

Kiran has now been in the NICU over 3 months. Alex says every single day, sometimes several times a day, “mommy, daddy, when is my sister coming home?” or “I miss her”. It is heartbreaking.

The week that Kiran was supposed to go home is the week they discovered her hernias. Well we were all so excited that she would possibly be coming home, and we got Alex excited also. We found out today, over two weeks later, that Alex got so excited that she told her friends her sister was coming home, and her friends told their families. We saw her Thanksgiving Show today and some parents asked where the baby was. Of course I had to tell them she was still in the hospital. I asked Alex what she tells people about her sister and she said to me one night that she doesn’t want to tell people about her surgery because that might make people sad. Now, is that a thoughtful six year old or what? She is amazing and we are so proud of her.

I helped Alex make a Thanksgiving card for a soldier overseas and it turned out beautiful and she was so proud of her work and we hope that it makes somebody’s day overseas and helps them to get through Thanksgiving and not being home, with their families.  Alex has gotten really good at riding her two wheeler without the training wheels.

Last weekend, all the cousins made Kiran a video singing Twinkle Twinkle Little Star and Kiran loves it.  We play it over and over for her at the hospital.  Today Alex made a video of her own singing and we’ll see how Kiran likes it tomorrow.

I am not looking forward to Thanksgiving and Kiran not being home.  I just pray we can all get through it together.  I am thankful for my beautiful daughter and strong husband, but I wish my baby could come home soon.

Here are some new pictures:

Chicken legs!

Her own private room decorated

You really don't have a bottle mom?

Alex and her buddy Christopher singing at their show today

Finally holding Kiran after not holding her for two days

Kiran with the NJ tube

Today is my mother’s birthday.  She has been such a huge help in this whole thing and also my sister.

Today is also day 88 of Kiran’s stay in the NICU.

She did well immediately after the surgery and was healing nicely and not in too much pain. If she was in pain, they put some sucrose on her tongue and that helped ease the pain.

When her ventilator was removed, it is customary for them to culture her sputum. The culture came back positive for serratia. It is a nosocomial (hospital induced) infection that left untreated or unnoticed can cause death in a preemie. So far she has it just in her upper respiratory, it is not in her bloodstream and she was started on a 10 day course of antibiotics and that should do the trick.

On the same day as my surgery, this past Tuesday, the doctor told us that they were switching her to a higher calorie formula so she could gain some weight since she had hit a plateau in her weight gain.

So we visited her before my surgery and fed her the new formula. She drank down 55 cc’s and didn’t spit up much. After we got home from my surgery that night, we got all the bad news. Kiran had been vomiting basically the entire day. And they told us then about the serratia.

At 12 midnight they stopped all her feeds and put her back on IV and TPN.

The next day, Wednesday, she began getting cold, so they kept putting her under the warming lights. Finally, today the put her back in the Giraffe so she can keep her temperature regulated.  She is still on the TPN and IV’s, and she needed a transfusion today since they’ve been testing her blood every day since the surgery.  She actually looked good today since she doesn’t struggle to keep her food down.  Her face actually looked pretty good today.

Immediately after her transfusion was over, she felt much more energetic and realized she was hungry and began screaming.  Poor baby.  The doctor wants her belly to rest a bit more before trying to feed her again since her belly is so sensitive and he wants to make sure that her food intolerance has nothing to do with the infection.

So, we are just waiting.  Meanwhile the Giraffe is keeping her warm at least.  One day she’ll realize she’s a Florida baby!

It makes me sad and angry to see other babies going home who were born around the same time as Kiran or even after.  There are 27 weekers around her just thriving.  Her nurse last night told me she was so disappointed to see Kiran like this again on IV’s and TPN.  It made her sad also and she said she couldn’t imagine how Parag and I felt.  The nurses always ask how I’m doing.  Today when I saw her in the Giraffe again and on IV’s I broke down and cried for the first time in a while.   When another child’s father asked how she was doing, I couldn’t even answer him.  Luckily mom was there and told him and he said he was so sorry that she hit another bump in the road.

Here is a letter that Alex wrote to her sister, with spelling corrections of course:  Dear Kiran, I hope you can come home soon.  Because I’ve been waiting for you since you were in mommy’s tummy.  I wonder if you can come home soon.  I wish you good luck.  You are a very funny girl you know Kiran?  Love Alexa  On the back of the letter is a picture of us all in the car bringing her home from the hospital on a beautiful sunny day.

Please continue praying for Kiran.  She’s a fighter and she will get through this and so will we.  We just want to bring her home so she knows our love, and our touch, not needles and being poked and prodded all the time.

here are some recent pictures:

Alex's picture to her sister

Back in the Giraffe

Big feet, a Goel trademark I think?

Stretching her feet out, pretending she's on the beach

Yesterday was horrible and she was screaming out of control and every time I tried to put her down, she screamed more. So, I wound up holding her for four hours, and two feedings. Parag went out to the lobby and caught the OSU game and they won and came back in at 7PM and I was just about to put her down since that is when the NICU closes for shift change.

She seemed to be doing much better today, much calmer so she is healing.

Kiran is still not gaining weight, actually lost an ounce, so now she weighs 4lb 13 oz. The nurse practitioner says she will bring the discussion up with the doctor and see if they can increase her calories so she can gain weight.

I was hoping she would be home for mom’s birthday, this Thursday, the 12th, but I don’t think that will happen. So, now my new goal is her being home before Thanksgiving.

The NICU tried her home apnea monitor on for 24 hours and it worked fine.

Alex had a sibling class today and she was the only child who’s sibling was already here. I told her she was the luckiest. She didn’t think so since she can’t see her. She did well though and really enjoys having me help her swaddle her baby doll.

Tara was a huge help this weekend and took Alex to the circus and then she stayed overnight. And then we all went back for dinner tonight. It was really nice for her to do that and give us possibly our last child free night in a long time!

Parag and I ate out at Chili’s and then watched a movie at home. It was nice and relaxing, and really quiet!

Kiran and her favorite toy Elmo

Kiran post surgery

We were all excited and led to believe that she would be coming home this week.  Then, yesterday the NICU happened to be closed as usual when I got there.  I spoke to the discharge coordinator who then told me that Kiran is “medically unstable” to go home.  Her weight gain is not steady, it is up and down, and she still has severe reflux.  So, those two things need improvement before they can even think about discharging her.  I was so disappointed and angry since nobody told us this until I spoke to Alexia.

Then we went to visit her last night and after feeding her, we were told that the doctor wanted to speak to us.  We knew that wasn’t good.  When the doctor has to speak to you it isn’t good news usually, and it wasn’t.  She had an X Ray yesterday morning since her right abdomen seemed swollen.  The doctor spoke to us and said he believed it was an inquinal hernia and they usually do surgery to repair that.  The surgeon saw her minutes after we left and called us while we were on our way home and said that it’s her ovary that is sticking out in the form of a hernia.  She may also have it on the other side.  And while he’s in there he wants to also repair her umbilical hernia.  So he said we will be called tomorrow for the schedule.

November 5, 2009

Well we were called basically as Kiran was being wheeled in.  I was heartbroken because I really wanted to see her before the surgery but everything happened so fast!

The surgery was done in about an hour.  It seemed like it took forever!  The waiting was the hardest.  They wheeled her right out of the surgery in a Giraffe again with tubes all over the place and wires.  She looked so helpless like that.

Believe it not her eyes were wide open looking at me and Parag.  Then we waited until she relaxed and closed her eyes and then we got a bite to eat.  When we came back she was fast asleep.  So we came home to rest a bit and then we went back tonight.  Mom took care of Alex and picked her up at the bus stop and made her dinner.

The surgeon said the surgery went perfectly and she did really well.  Her Fallopian tube was attached to the ovary that was sticking out and her ovary on the other side was also sticking out so they repaired all three hernias including the umbilical one.

She is on a ventilator because she is still really sleepy to remember to breathe.  They will probably extubate her by tomorrow morning and remove all the other wires and resume her feedings.  She seemed agitated tonight possibly from some pain and just having the tube in her mouth.  She also had a lot of gas that they pump her full of during surgery so they can see the organs better and the nurse was removing that bit by bit every few hours.  Her whole abdomen is a bit swollen but should go down soon.

Good news also is that her apnea monitor is in and we will learn how to use it tomorrow. And when she is almost ready to go home, they have a room in option where we can stay with her overnight and get used to the monitors, etc in case we have questions the nurses are always there.

here are some pics from last night and today:

I want my food now!

Holding onto Elmo and relaxing after eating

Mommy and Kiran bonding

Wide awake right after surgery

Kiran had a rough past couple of days. She became very frustrated and irritated and had more spitting up episodes. So they took her off of the Reglan for 24 hours and then put her on another stomach medicine called Prevacid in addition to the Zantac. She seemed to have a better, calmer day.

They moved her to the end of the NICU, right next to the Exit sign. I figure that’s a sign it’s getting close to her time to come home!

We all took the crash course in CPR in the hospital, and we’ll be taking the regular course at our local hospital this week. Kiran passed her carseat test and was able to sit in the seat for over an hour without any apnea episodes. We filled her prescriptions and I learned how to give her everything by syringe.

Now all we are waiting for is the apnea monitor to be ordered since last week. Once it comes, we will learn how to use it. Then Kiran has to keep it on for 24 hours and make sure it works properly. Then she can come home.

She is still very long and skinny at 18 1/2 inches and 4 pounds 12 ounces. She lost an ounce this week, so the doctors have the nurses mixing the formula in a way to make it thicker and more calories. So, hopefully that will help her gain some weight. She still fits best in some preemie clothes the hospital puts her in. Most of the newborn outfits I put on her are pretty big, but I figure she’ll eventually grow into them.

Every day Alex asks me if Kiran is coming home today. I can’t wait to give her the answer of YES!

This morning Parag and I went to WIC (Women, Infant, Children program) so they can cover the formula and we were happy to find out that we can actually pick it up right there in the office every month. They are also letting us have some basic foods like milk, cheese, eggs, vegetables since I’m still considered post partum and I told them we basically eat on the run during the day running back and forth to the NICU and trying to take care of Alex. I hope once we can stop running back and forth to see Kiran in the NICU, that we can start eating healthier and have better meals. I only have energy most weeks to cook one or two meals a week. But I do make sure Alex always has a healthy lunch. Luckily she loves vegetables and asks me if I don’t give her a vegetable what happened to it. I guess I taught her right!

November 3, 2009

We had a great visit today. She seemed to be feeling much better and really looked good. They added a new medicine to her zantac called prevacid and it really seems to be helping her reflux. Kiran didn’t have any major spit today. So I’m hoping with the thicker formula and the new medicine, she can start putting some weight on. She is getting much aware and she cries often now during the day. If it’s not eating time and she’s up, she wants attention, she wants to be held.

We are still waiting for the apnea monitor company to call us so that we can meet them at the hospital and learn how to use the machine. And then they will try out the machine on Kiran for a full 24 hours to make sure it works properly, and then we get to take her home! So we are just waiting for that call.

Alexa met a nice friend in the NICU waiting room. Her name is Alexandra and has black hair just like her and they’ve spent a lot of time together unfortunately in that waiting room. We pray that both their waiting times are coming to an end really soon. Alexandra’s brother is now just over 5 pounds and was born at 24 weeks!

I pray that the next updated blog I send you is the one that says she is coming home!

Here are the Halloween pictures and then I added a few recent ones from today.  http://www.facebook.com/album.php?aid=42085

Sleeping beauty waking up

I want my food NOW!

The cutest Thing 2 ever!

Ahh, belly is full and mommy is holding me

Time for more beauty sleep

Alexa and Alexandra in the hospital waiting room

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)

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 : (

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

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