Archive for September, 2009

My mom found this beautiful little antique dress and we had a day of dress up and a photo shoot. It was way too much fun. My aunt got her this little hat to wear home from the hospital when she was born and then when she is christened and to carry when she is married as her something old.  It was perfect with the dress and the old rocking chair. A few of our favorites… There really were too many to pick from.

When your child has “Sixty-five Roses” (CF) it can be hard to stop a busy day of treatments and chores to just smell the roses. Today we did. Literally…

I pulled the rose in toward her and automatically she wanted to grab it and put it in her mouth. We showed her one time that you don’t have to touch it you just smell… Mmmm! It smells good your turn and you know that smart cookie really did just smell it. Well, 3 or 4 times and then the fun of that wore off and she grabbed it. The kind of hold where you can’t even pry her fingers open (like when she gets your hair) the petals all fell to the ground and that was the end of that. It was very nice while it lasted though. Ha!

Her potassium is good! Actually everything they tested for was good. When I asked about the hemoglobin they told me they didn’t test that. When I told them I thought it might have been low from all the blood draws in the hospital the nurse on the phone said that it was tested at the beginning of her stay and that it was low then, but then she looked into it and it was only a little low at the beginning of the stay and it got lower throughout the stay. They still want to put her on an iron supplement. I talked to her pediatrician today when she got her shots and she said she would recommend I give her half the iron supplement and make sure I take my prenatal vitamins, because the iron she gets from me is more easily absorbed then a supplement.

Oh and then last night I see there is a recall on infant Tylenol and I look up the lot numbers and what do you know! Ours is on there. I think I should start playing the Lotto. The odds of all the stuff that has happened to us in the past year has to be crazy impossible. The last time I gave the Tylenol to Virginia was with her 4 month shots and I was going to give it to her today for her 6 month shots but luckily it was on the CF site last night. The doctor said since we gave it to her 2 months ago she is not too worried and I guess they have not found any live burkholderia cepacia. I called the CF clinic and I didn’t hear back from them before I had to leave to go to the pediatrician. I’ll call back on Monday, but I don’t have a bad feeling about it since we did the bronchoscopy and nothing grew at all from the sample in her lungs , and that was only a couple weeks ago.

Ok so poor punky Sue had to get four shots and she really cried. It was so heartbreaking. I thought I would do better at just shots after seeing her in the hospital for so many days, but nope. My poor little angel. She was so upset she did that cry where no noise comes out for a long time. Her mouth wide open and her face bright red. Oh… She seems to be feeling fine now though. She’s not acting achy or anything. Hopefully she is feeling good tomorrow.

Today we had Virginia’s check up. She is now 17.2 lbs!! And since she’s not super tall (nether are her parents ) Her height to weight percentile is above the 75th now! This is great news for us. I never knew weight gain could make me so happy. Her oxygen was 99 and lungs sounded nice and clear. We had to have blood drawn to check her potassium level and her hemoglobin. They told us today it was on the low side. They asked if I might be anemic, because she is breastfeeding and I might be the problem. I have not been taking my prenatal vitamins in a while, I’ve had too much on my mind, and they said I need to start taking them again. Especially because I don’t eat red meat. I’m thinking it could be because they checked it towards the end of our stay in the hospital and she had so much blood drawn so often that I’m wondering if that was the problem. We’ll see how the results come back from today. They also said since her lungs looked so good during the bronchoscopy we are taking her off the Pulmozyme and we are putting her on  hypertonic saline instead. They found in Australia the people with CF that surfed had much better health during the seasons they were surfing a lot and so came, hypertonic saline… I’ll let you all know when we hear about her lab results. Oh and Friday is 6 month shots. Ugh, pray for that. No fun I tell you!

There’s that wild nose scrunch I talked about before! Ha! I love that little tiny!

My Grandma and Grandpa are here visiting from Maui. It has been a great trip full of relaxing, trips to the park and Oak Glen. It feels so natural to have them here. I can’t believe they’ve been gone for three years. Virginia instantly took to them both. She just hit that age where she’s not too big on strangers, but she seemed to somehow know these new faces were not strangers. They were her new best friends! She loves to hold on tight to them and be held. It is precious really! When they come back it feels normal and like it should be.

Virginia Meets her Great Grandpa and Grandma

Grandpa and Virginia

Grandma Virginia and baby Virginia

Holding Grandpa’s  hand

Grandpa and Uncle Brian

The Virginia’s

Holding Grandma’s hand

…and Uncle Brian (letting nature takes its course) HA!

Today Virginia and I went down to get baby food and Derek was working near by. He met us on his lunch break and we sat out in the sun on the nicest day ever. It was breezy and sunny, but only like 80*. Virginia smiled and smiled sucking in the fresh air. She is so happy to be out of the hospital and out in the sunshine again (where every child belongs.) I’m so happy too. It’s hard to shake the feeling of being there. I’m so grateful to be home. I did learn I will never judge the way a person looks in a hospital now. I don’t know that I ever did, but I really won’t after that experience. I never left her side, not even to pee unless Derek or my mom was there to be with her. I brushed my teeth next to her bed and dressed there too. I feel so blessed she is our only child and we were there for a short time so I could stay with her. By the time we left on Friday my hair was so greasy and I had dark circles under my eyes. I looked and felt like hell, but could not stop smiling because we were leaving. The mom that shared the room with us shared the same look as me and I thought we look terrible, like complete white trash (ha) but we love our children more than anything in the world. It takes a good parent to look so bad. It means they care and they are loving, protecting, and taking care of the angel God gave them. Next time your in a hospital and you see someone that looks like this know they really, really love someone.

Do you want to go home baby?

Her eyes start to light up…

YEAH!!

Home to wash to hospital off us…

Tuesday began with this on my breakfast tray…

Tuesday was by far the hardest. We had gotten the news her potassium was very low in the middle of the night and this can affect your heart rhythm. When I was pregnant they found she has hydronephrosis (water on her kidneys) So right away we’re thinking her kidneys are not working to absorb the potassium. They want to do an ultrasound and look at her kidneys as well as test her urine to see if it is just passing through her. Also she was not able to eat from 2am until 11am because we had to do a Bronchoscopy that morning. This requires her to be put under. So she is exhausted and starving so you would think she would be a bit cranky. Not Virginia. She is smiling at every doctor and playing with George her new monkey from Bami and Papa. She is so tough. They came to put her under and were so kind to let Derek and I stay with her until she was asleep so she would never feel alone or scared. Derek held her I kissed her cheeks and sang her itsy bitty spider (her favorite song) They gave the first dose of anesthesia and had us lay her down. We stayed by her holding her hands and praying in her ear. “God protect this precious child you gave us. Clean her lungs and make them new again. Rock her in your arms of love and safety, God. Give her strength.”

Now I’ve heard people say someone was a fighter, but I never seen anyone fight like her. She should be completely relaxed and half asleep, but instead she is yelling the happiest sequels you’ve ever heard and kicking her legs like she does when she plays. She was even smiling! They call the doctor in and she says,”I thought you said you did the anesthesia.” They all say at once, “We did!” They gave her the second dose and she was asleep. Derek and I were ushered out the door where we could see a little through a window. We held each other and cried until it was finally over. They let us come back in and hold her as she came to. She coughed an coughed (a good thing) and then continued where she left off with her happy kicking. She is so STRONG! Next they drew more blood to check potassium and we waited for the ultrasound. They came and we prayed again that God would heal anything in her little body that was not working right. Later that day we got the results from the ultrasound that her kidneys are growing the water is becoming less and less. Her body is healing! (God is healing her) The urine came back good! Derek and I thank God over and over for helping her.

They said they found her chloride (salt) was also low and that because kids with CF loose more salt when they sweat. She may have lost too much. This can throw off your electrolytes and your potassium affecting the heart. It was a Godsend we found out this was happening before it affected her heart.  Now all we had to do is wait for the 48 hours for her culture to grow and we would know what was happening in her lungs. The doctor told us that with the camera down there they could see her lungs looked beautiful inside. She said there was no mucus build up. No green or brown mucus. All VERY good news. So now we waited for the results of that. More blood draws, breathing treatments every 4 hours, heart monitors, oxygen monitor, and IV’s. She had so many tubes and wires you could not walk more than 2 feet. They had to put a cast on her because she thought it was a very fun game to try to pull out her IV and bend her arm against the splint. A little more of that fiest in her.

The days went on and Thursday night they said things were going so good we might get to go home on Friday but then in the middle of the night she got a low grade fever which just sent me over the edge. She was on IV antibiotics so I thought what kind of terrible infection she would have to have to develop a fever. I called Derek in the middle of the night and told him pray pray pray. I called my mom and cried and begged her to pray for a miracle. We all prayed and over the next hours it came down point by point and they said they could not explain it but maybe her thin blanket had made her hot. (It was God.) The next day, Friday, they said the culture never grew anything!! (GOD AGAIN) and that her potassium had stabilized and we would be going home that day!!! HALLELUJAH!!!! Every last prayer for healing God answered. I think that in the end it was the worst experience of our lives but God let us fix her potassium and protected her through it all. We are so blessed. Thank you for every prayer and all the love!! She is HEALTHY again!