November 19, 2009 (a week to catch up on)

November 20, 2009 mommytoabpluskb

It’s been a rocky, crazy week and thankfully Kiran is beginning to show signs of improvement.

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:

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2 Comments Add your own

• 1. Lauren Valenta  |  November 20, 2009 at 3:20 am

  maybe she be home for christmas

  Reply

• 2. Maria Claudina  |  November 20, 2009 at 8:12 pm

  It is so amazing the strenght God can give a little girl like yours, and all your family to live this, and yet remember someone overseas. My prayers are also with you.
  With Love
  Claudina and Gabriel

  Reply

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