Wednesday, January 30, 2008

Mia Pictures

Eskimo Kisses!


Are those cat chairs?


Cindy Cat...whose bed is that?


My hand is getting bigger!


Daddy & Daughter

Can't Wait To Weigh Her

Mia has been eating so well these past few days...in face she's been eating in the 500's every day, which is awesome, praise God! We've been very encouraged with how well she is eating. I'm excited to see how much she weighs on Friday when we go to LA to see the cardiologist. I was going to take her in yesterday, but Brad's truck is getting fixed so we only have one car at the moment and it seemed easier just to wait until Friday to see how much she weighs. We'll keep you posted!

Monday, January 28, 2008

She's Eating Well!

Mia has been eating so well these past two days. In fact, yesterday she broke her record of food consumed in a day...we were very excited. She was close to 510 cc's...which is 17 ounces. We've been very encouraged by feeding her every 2 hours. Thank you for praying! Please continue to pray for her weight gain.

Saturday, January 26, 2008

More On Feeding

Mia has been doing really well today with her feeding! Praise God, thank you for the prayers! We've switched to feeding her every 2 hours, even if she is asleep and it seems to be working. We know it is going to be a lot of work to keep this up, but we are hopeful that as she continues to grow bigger she'll eat more at a feeding and do better. Please continue to pray for weight gain! I'll be taking her in on Tuesday to get weighed so we'll see how she's done this week.

The twins, Felicity & Charity, are doing well. Here is an excerpt from their mom's email:

Hello Family and Friends –

It’s Nancy – I am home and doing well and wanted to send you all a note to say thank you for your support this week. Thank you for the flowers/balloons, thank you for your prayers, thank you for all of the help in our home and with Trinity and thank you for the meals.

The amount of support has been staggering and we are humbled by the community and family we have around us. Thank you.

Felicity and Charity are doing well. Their doctor told me yesterday that they are doing better than most babies of this age. They are not on a respirator as they are both breathing on their own. They are on a C-PAP machine to force air into the lungs. They are receiving milk from me and are eating well – 2 teaspoons 3X/day at this point. As of this morning, Charity weighs 2 lbs., 2oz and Felicity weighs 2 lbs., 4 oz. They have both gone down from their birth weight, but that is very normal. They appear strong and maybe a bit feisty, the nurses tell me. We visit them each day in the NICU and covet all of your prayers for them to grow to full-term and come home in God’s timing.



Thank you for praying for all of these babies! It means so much to all of us.

Friday, January 25, 2008

Feeding

Mia continues to struggle with her feedings. I have a call in to her intestinal doctor to see about making the formula part of her feedings a bit more caloric. We were supposed to go to LA today, but the grapevine was closed yesterday and I didn't want to chance getting stuck on it, so we've rescheduled her appointment with the cardiologist to next Friday. We have a follow-up visit with our pediatrician on Tuesday, pray for weight gain! And so far there have been no other complications with her stool...it's been just fine, Praise God! Pray also for strength for us, I can't explain how exhausting it is feeding her every couple of hours, I'm so thankful for Brad, he's a great daddy and he takes really good care of me at night too...he'll make me get several hours of sleep together while he takes the feeding shifts a few times in a row. Thank you for continuing to pray for us, it means so much.

Wednesday, January 23, 2008

Good News

When we were at UCLA, the geneticist pulled Brad aside to talk to him bluntly about what Mia's future held. He said, "we can't be pessimistic, and we can't be optimistic either". He also spoke about the things he saw that were symptoms of a genetic disease. He was the most vocal about her ears. He said that her ears were set low on her head and had a tilt to them. He said her ears could be a clue that she has CHARGE syndrome, or down syndrome, or something else that doesn't have a name yet. You know her first two genetic tests, the FISH test, and the CGH Array, both came back normal. No Genes missing, no material missing.

Today, Brad's mom brought over some genetic history....






































I think we have a match! We are greatly relieved that her ears will probably grow up to look normal. (At least as normal as Dad's ears.) AND this leads us to believe that doctor was jumping to conclusions about her ears and having a genetic disease. Thank you God!!

Tuesday, January 22, 2008

Doctor Visit

Today we ended up taking Mia to our pediatrician. She was scheduled to go tomorrow, but this morning when I was changing her, I noticed there was blood coming out of her stoma (the opening that she stools out of). It was not a lot, but enough that I noticed it and became concerned. The pediatrician looked at her and she appeared to be doing fine. We also called UCLA and let the intestinal doctor know the situation, they told us to monitor it and if there was any more blood to go to the emergency room. So far there has not been any more blood, praise God!

We also weighed her when we were there and I was very disappointed to learn that she had not gained any weight from last week. Brad, on the other hand, was just happy that she hadn't lost any weight. So please continue to pray for her feedings and for wisdom on our part and the doctors parts on what the next best step is. One thought is to possibly increase the calories in the formula part of her feeds...we'll see what the doctors say about this.

For those of you praying for the twins, Felicity and Charity, they are doing well. They've got quite a long journey ahead in the NICU, but right now they are breathing well on their own, which is great news. Pray that they wouldn't have any further complications, but would be able to grow strong and healthy.

Friday we go to LA to see the cardiologist, pray for our visit and for travel with Mia.

Monday, January 21, 2008

Prayer Needed!

Today our friends Bo and Nancy had to deliver their twins early. She was 26 weeks, I believe, and the twins were born under 3 pounds. They are breathing on their own, but it is very touch and go at this time, so please pray for them. The girls names are Felicity and Charity. I know that they would covet your prayers just as we do for Mia. Thank you for praying!!!!

Thursday, January 17, 2008

Healing

Brad and I are so happy with Mia's skin around her stoma. The irritation is almost gone, I would say there is only 10% left, which is awesome, praise God! Thank you for praying...it is a relief knowing that her skin is not so irritated.

Pray though for her feedings...these past couple of days she has only been eating around 440 cc's...I know that she can still gain weight even though the doctors may not feel the same, I know she can because I know that God is not beyond the impossible. She has another pediatrician's appointment next week, and I am praying that she has gained at least 7 ounces, that would be awesome!

Monday, January 14, 2008

She's An 8 Pounder!

I took Mia to the pediatrician's office today to see how much weight she has gained since last week Monday. Today she weighed 8 pounds 2 1/2 ounces. Last week she was 7 pounds 15 ounces, so she's gained 3 1/2 ounces this past week. The doctors would like for her to be gaining 4 ounces a week, so she's going to have to do a little better this week. Since she weighs more now, she also requires more calories, so pray that she would continue to eat better and put on more weight. At her current weight she should be taking in about 500 cc's each day and the past two days she's been at 480 cc's, which is great, but she needs to do a little better.

Her stoma has been doing much better, so continue to pray that it would heal completely, we are so close! We are just thankful that we are making progress in that area because the skin is such a sensitive issue and it's no fun when it hurts.

Saturday, January 12, 2008

Happy 3 Month Bday Mia Danielle!


Today Mia is officially 3 months old. It is hard to believe that it has already been 3 months! She continues to be so so with her feedings. Some feedings she does great and others not so well. Lisa is planning on taking her to her pediatrician on Monday just to see if she's gained any weight since last week or not. The intestinal doctors really wanted us to watch her weight for this month to see if she is making any progress. So continue to pray for her feedings. Also continue to pray for her stoma as we continue to try to heal the irritated skin!

Thursday, January 10, 2008

My Three....Girls?


You've heard of my three sons. Well check out my three girls. Aren't they cute? Mia had a very long day today, drinking not as much milk as yesterday. And something upset her tummy and she spit the 6pm feeding all back up when we layed her down to change her. So please continue to pray for her feedings.

Wednesday, January 09, 2008

A Good Day Of Feedings

Mia had a really good day with her feedings, she's taken in quite a bit more today than in the past week or so, which is great. Of course she's been eating every 2 hours which makes it a bit more difficult for us. But we are thankful that she has been eating more, even if it is more taxing on us.

Please continue to pray for her feedings and pray for us, that we would have energy and strength. Thankfully for Lisa, her mother and Brad's mother have been coming over to help out and let her have a chance to get some naps in during the day. What makes it particularly difficult is that Mia loves to be held and the moment you put her in her crib she's not a happy camper...she would sleep all day in a person's arms if she could. So it has been very helpful for Lisa to have the grandma's around to give her a chance to eat, sleep, etc.

Continue to pray for her stoma also as this can be a slow process in getting healed. We are hopeful though that the new bags and information the stoma nurse gave us will work out.

Tuesday, January 08, 2008

Doctor's Appointment

Today we went to LA for a follow up visit with the pediatric surgeon who did Mia's first intestinal surgery. He said everything looked fine, but he would like to see her gain more weight (of course!) We would too. We also saw the stoma nurse, who gave us some new bags and some very helpful advice. Talking to her definitely made the trip worthwhile! We returned home around 3PM. Would you pray specifically for Mia's feeding? We need her to eat more and weigh more. Thanks and God Bless!

Honey I shrunk the Baby

Friday, January 04, 2008

There's No Place Like Home

We had another doctor visit today in LA. This time we went to see the ear, nose, and throat specialist to look at Mia's blocked right nasal passage. Our appointment was in the afternoon and as we left Bakersfield the weather was horrible. It started to rain as we over the grapevine and into LA. We ended up being 30 minutes late to our appointment because of traffic and location confusion which was a bit stressful in itself.

The appointment itself went well. The doctor looked at both of her nasal passages and said that yes, indeed, the right one is blocked. She also looked in her mouth at her submucosal cleft palate, of which she said that she didn't think it was that, rather she thought it was just a high-arched palate. She said we wouldn't know for sure though, until she was a bit bigger. The doctor also told us that she doesn't really have choanal atresia because the blockage is just in the nasal passage, she called it stenosis instead.

At this point, she wants to wait until Mia is a little bit bigger...10 pounds...it seems as though everything hinges on her being 10 pounds. But, the positive is that we actually scheduled a day for the surgery...March 11th...and it looks as though she'll have to stay in the hospital only 1-2 days after the surgery so they can monitor her heart.

After we left, the drive home was really difficult because of all the rain. There was also an accident that slowed traffic near the grapevine...needless to say, we were so thankful to be home...

Our next visit to the doctor is this coming Tuesday. We will be seeing the intestinal doctor regarding her next surgeries there. In the meantime, you can pray for her stoma, the skin around it has been irritated and we've been trying to get that healed with the stuff the ostomy nurse told us about, pray that we would have success.
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