Thursday, February 21, 2008

X-ray Update

We found out that some of Mia's sutures have prematurely fused. And it appears as though she'll have to have surgery to open them up again so that her head can grow appropriately. At this point there is still room for her brain, so it is not hurting her. However, if it isn't corrected, her head will be super misshapen as she grows older. Right now we are waiting to have an appointment scheduled with a neurosurgery team and a crainiofacial team. So please pray for the scheduling of that appointment and wisdom on the part of the doctors as to when and how best to fix this issue.

We did find out today that they are going to put the dye in her lower half of her intestines the day before her nose surgery. Her nose surgery is scheduled for Tuesday March 11th, so the dye will take place on Monday March 10th.

Tuesday, February 19, 2008

A Long Day - Lots of News

Driving to LA is not one of my favorite activities, but it is something that we now do a lot of and don't have much choice with, so you just do it and pray that God will give you the strength to survive the day, especially when it is a long one like today. And we can say that God did carry us through the day amazingly.

We left bright and early at 8:00 am to make it to LA by 10:30 am. Very close to Magic Mountain Mia started to get a bit fussy so we pulled off to change her diaper and give her a moment out of the car seat. As we were sitting there, Brad looks over at the freeway and there is a police car driving very slowly with a lot of cars following. A few minutes later the freeway is at a stand still...and we're thinking, oh no...this doesn't look good. Rather than jumping back on the freeway where it was a stand still, Brad drove us south on surface streets and we were able to get back on the freeway in front of whatever happened (we have no idea!)...and we were thankful. Needless to say, we arrived at UCLA right on time for our first appointment, thank you God.

Our first stop was with the intestinal doctor. Note: Some of what I write here may be graphic, but in order to pray appropriately, I feel like I have to explain the situation in detail. Mia weighed in at 4.5 kilos...and remember, they wanted her to be around 5 kilos (11 pounds) for the next we are very close, in fact, close enough to start the process! That made me very happy, you see, I need goals and this puts getting everything done one step closer. So, Mia's next step is for them to insert a catheter in her fistula (the opening to the bottom half of her intestines) and inject some dye and x-ray her lower abdomen to see where the intestine actually connected up. There are a couple of choices, the most likely is that it connected to her vagina, however, it could have also connected to her bladder or somewhere else. If it connected to her vagina (this is the best possible case), then it is very likely that she'll be able to control her bowel movements later in life. If it connected to her bladder, then there is a higher chance she won't be able to control them. So please pray that regardless of where it connected, she'll be able to have control of her bowels. The intestinal doctor did say though, that outwardly it looks as though it probably connected to her vagina because of the fact that she has "bum cheeks". That means she was really close to being developed properly. :) After they determine this information, they are going to set up the next surgery which is to create the anal opening. So, when are they going to look with the dye? They are checking to see with radiology for something in the next couple of weeks. We are getting closer!

2 bottles later, we were headed downstairs to the lab for Mia to get blood work done prior to her next surgery (3 weeks from now!). That was probably the most difficult time of the day for me and for Mia. There was a little bit of a wait and by the time we got in there, she was hungry again, so 1 bottle later they were trying to find an artery to use to draw arterial draw was requested... So several of the lab people came in, but if you remember from the NICU, Mia is a hard one to stick because she clots easily and her veins/arteries are difficult to find. After 3 people tied off both of her arms they decided to send in "Fernando"...he's the one who can draw the blood when no one else can. Anyway...he was able to stick her and get blood (3 viles...which is about 10 cc's...), but she was very angry during the process and when she gets angry, she'll sometimes make herself gag to the point of throwing up, which she did and we made him take the needle out as all of her milk was coming back up. :( The good news is they got enough blood that we didn't have to do it again...thank you God! But not a fun moment for Mia.

1 more bottle later we were headed upstairs to an appointment with one of the NICU doctors for a follow-up visit. They were so excited to see her, the doctor who discharged her stopped by just to see how she looked because she heard she was coming. They were very excited to see how big she had gotten. They brought in an occupational therapist to see how she was doing developmentally. She assessed her and made some notes, but didn't say whether or not she is behind this point it is still a bit early to know because she was born a month early and she had a few surgeries to begin with, which is not typical of newborn babies. They just want to keep track of her progress at this point, there are no major concerns. The NICU doctor then came in and talked to us and looked Mia over. We discussed her medicines and decided she didn't need to be on all of them, so from now on she'll just be getting zantac, iron, and vitamins. And we talked about increasing the calories in the formula she gets to try to bulk her up as much as possible in the next few months prior to more surgeries. Pray that she would tolerate the increased calorie formula.

We also pointed out that there is a bump on the back of Mia's head (a bony bump of some sort) and so they started looking at the sutures in her head (a person's head is made up of different regions, which eventually fuse together, the location they fuse together is called a suture) and thought that one of them looked like it might have prematurely fused. They weren't for sure, so they scheduled us to take her downstairs before we left to have some x-rays done of her head. If they are prematurely fused, then she may have to wear a helmet to shape her skull as it grows. We'll know by tomorrow what the x-rays tell them. We were encouraged that it is something that they can fix with a helmet when it is caught early. It was really cute when I took Mia downstairs to get her x-rays. The first one was her lying on her back looking straight up into a light. She was so mesmerized by the light that she held perfectly still, the x-ray technician was so impressed with that and she thought it really cute.

1 more bottle later we were on our way home (5pm) and I was so not looking forward to the drive, especially at that time for LA. Praise God though, the traffic was not bad for us at all and we were home by 7:30, which included one stop for 1 more bottle.

Now if you were counting that should have been a total of 6 bottles...yes, 6 bottles for Mia, which is about 12 hours of time. We were very thankful to be home. And as I reflect and write this, it was a long day, but a good day. God has taken care of us so well. We are thankful. And thank you as you continue to pray for Mia in her journey, it's not over, but it's getting closer.

One last note, Mia has been eating much better, back to how she was before her shots, so we are hopeful that she'll continue to do so as she gets bigger!

Sunday, February 17, 2008

More of Mia!

Here are some more photos of Mia. She continues to do so-so with her feedings, sometimes she'll take a whole bottle and other times she won't. Please continue to pray that she'll get back to the numbers she was at before. She should be taking in about 580 cc's a day and for the past four days she's been in the high 400's...yesterday she did get to 505...but still, she needs to be eating more.

Friday, February 15, 2008

Daddy's Valentine

Yesterday was Brad's birthday (don't tell him I told you...) and his mom got Mia a cute little outfit that said Daddy's Little Valentine. So we dressed her up in the outfit for him to be surprised when he got home to see her. Here's a picture of that little shirt.

How's she doing? These past couple of days she has not been feeding well at all...very discouraging for Mommy. However, I noticed that the last time she got her immunizations she didn't feed well for a few days after also, so we are hopeful that she'll pick up the pace again tomorrow. Aside from that, she's doing great. Our prayer request is that she would get back to feeding better.

An update on baby Maddy. She's finally out of the ICU and is breathing on her own. She's making quite a bit of progress, which is awesome. Please continue to pray for her. And also pray for the twins, they are still having their ups and downs with feedings. The good news is that now Bo and Nancy (Dad and Mom) can hold them and they've been their holding them a lot. Thank you for praying for these little girls!

Tuesday, February 12, 2008

4 Months Today!

Mia is now 4 months old! Praise God! She did really well with her shots this morning at the pediatrician's office...she'll be a bit sore for the rest of the day, but she appears to be tolerating them well so far! She also got weighed today and she is now 9 pounds 9 ounces! She'll be at 10 pounds before too long. Which is why I am so hopeful that at our next visit with the intestinal week Tuesday...that they'll schedule a day for her next intestinal surgery (where they create the anal opening). So pray that the scheduling would happen and that they are satisfied with her growth.

I am reminded with Galen's email of how precious life is and how our stay on earth is so temporary. Sometimes I get a bit overwhelmed with everything going on and don't like to carry all 9 pounds 9 ounces of Mia around, but today his email reminded me that life is short here and that 2 things are what matter...where we are going to spend eternity...and people. And then it isn't so hard to carry all of Mia around, in fact, it's a blessing to be able to do it. And then I think about other people in my life as Valentine's Day approaches and I think what a great day (although any day in the year would work) to tell those people in my life who are so important how much I love them and am thankful for them. So my prayer for you is that you would find the time to do the same with those that are around you and mean so much to you.

Monday, February 11, 2008

4 Months Tomorrow!

Mia is officially four months old tomorrow. It is hard to believe that we are already in February, it seems like we were just getting home from the hospital. Because she is 4 months it means that it is time for another round of immunizations. So pray for our trip to the doctor tomorrow. Pray that she does well with the shots...I believe she has to get 4...and pray that she doesn't have any adverse reactions to the immunizations. I'm also going to ask them to weigh her tomorrow...I'm curious to know how much weight she has gained this week!

She's been doing really well at home...she's eating well...Praise God! Of course we are still feeding her every 2 to 2 1/2 hours...we feel great if it is a 3 hour stretch. So please continue to pray for our strength and endurance.

Sunday, February 10, 2008

Four Generations!

Lisa's grandmother (her mom's mom) has been visiting from North Dakota since December and today Lisa, her grandmother, her mom, and Mia took some pictures together...four generations of girls!

Thursday, February 07, 2008

What A QT!

Brad's grandma Ginny, who recently passed away, had knitted this baby outfit for Brad when he was a baby. Brad's mom had passed it on to me at my baby shower and I thought I'd get some pictures of Mia in it. How cute is she?! Yup...that's a smile!

Wednesday, February 06, 2008

She's 9 Pounds!

9 Pounds 4 ounces to be exact! Which means she's gained 9 ounces just this week! Of course there may be a couple ounces of discrepancy since she was weighed on two different scales, but we'll take it. It is so exciting to see her eating well and gaining weight.

Tuesday, February 05, 2008

Prayer Works!

Hi all...just wanted to update you on the twins and Maddy. Please keep praying for these little girls, it means so much to the family, and we know that prayer works!

Here is an excerpt about Maddy:

Maddy is still in the ICU and making small amounts of progress. The doctor's took Maddy off of the respirator to see if she was strong enough to breath on her own. She was able to do so for a few hours before being put back on the respirator. Her body is not strong enough yet to breath completely on her own. We are hoping her muscles will get stronger each day. She has been opening her eyes more each day and has been gripping Janelle and Nick's finger for comfort.

Pray that she'll be able to breath on her own without the respirator.

Here is an excerpt about the twins, Felicity and Charity:

Today is the girls’ 2 week birthday – they would be 29 weeks gestation, had they waited more patiently to arrive. We can feel your prayers – and they are working. The girls are both doing well and the majority of the daily reports are positive. They go up and down with their digestion – some days tolerating milk well and other days not. When they don’t digest well, they are taken off food for a day or so and are given only IV fluids (protein, sugar, electrolytes). They are both breathing well and continuing to get stronger. One of the things they are monitored for is “forgetting to breathe”. They actually stop breathing at times. At first, the nurses would rub them and talk to them to wake them up – this is a very normal process for this gestational age. In the past couple of days, they have started to self correct – waking themselves up and breathing again. This is very encouraging. Last Thursday, I was able to hold Charity for about 5 minutes. It was wonderful and surreal. They are both 3 ounces above their birth weight – so we will be knocking on the door of 3 pounds each in no time!

Again..thank you for praying for these girls!

As for Mia, she continues to do really well with her feeds and we are encouraged that she is putting on weight and getting bigger. She still keeps us up a lot at night, but we'll do whatever it takes for her to keep on growing without a feeding tube!

Sunday, February 03, 2008

More Pictures!

Mia has been feeding so well. I can't wait to weigh her again and see how much more weight she has gained. Thank you for praying, we've been so encouraged this past week. I know that people want to come and visit, but are unsure if it is ok...just call us and if it isn't a good time we'll let you know, but as long as you are well then there is no reason that you can't visit and meet Mia!

Friday, February 01, 2008

Great News!

Today, Lisa and Mia, and Brad's parents David and Naomi went to LA for a follow-up appointment with the cardiologist. Dr. Perens said Mia looks great, and we can discontinue the lasix medicine, a diuretic to get rid of excess fluid in her lungs. They weighed her and after Lisa did the math on the weight of her clothes and diaper, we have a weight of 8 pounds, 11 oz!!! That is great! Brad notices how big her hands and cheeks are getting. Snooky Great!

The twins, Felicity and Charity, are doing well...please continue to pray for them also. Pray also for another baby, Maddy...she is up in the ICU in Fresno because of a rare condition called infant botulism. It is an intestinal infection that is very serious. Pray that she will recover fully from the treatment that they are giving her.