Monday, December 31, 2007

Much To Be Thankful For In 2007



It's hard to believe that 2007 is coming to a close. When Lisa became pregnant and we found out the beginning of March, she commented that this would be the "year of the baby" because she would be pregnant pretty much the whole year. Now it is hard to believe that the year is over and we have a beautiful little girl.

Brad finds it amazing that a year ago Mia did not exist, but God knew that she would be born on October 12th.

2008 will not be an easy year for Mia, but we are hopeful that by the end of the year, all of her major issues will be taken care of and she can move on from the "hospital" stuff.

We have so much to be thankful for and we know that we say it alot, but it is true...thank you for all who encourage us and pray for us, we are truly blessed!

Friday, December 28, 2007

Pacifier - Baby's Best Friend

We made it to LA and back today for Mia's first doctor visit with the cardiologists. And they were very happy with how she looked. They were also happy that she was gaining weight. They want to hold off on doing the actual heart surgery until all of her other surgeries are finished...they expect it will be close to 6 or 7 months of age when they'll do the actual heart surgery.

Thanks for praying! Mia did very well on the car ride down...she slept the whole way, it was very nice. On the way back there was a little fussiness, but we were prepared with pacifiers and hot water to pull over and heat up her milk...much less stressful than when we came home from the hospital.

Our next doctor visit is next Friday with the ear, nose, and throat specialists...they are going to look at her right nasal passage that is partially blocked and talk about what needs to be done there.

Wednesday, December 26, 2007

The Day After Christmas - Tonight We Are Serving Baby For Dinner


We just got back from the pediatrician today and Mia now weighs 7 pounds 8 1/2 ounces, so she is doing well at home. She's gained 4 1/2 ounces since last week, praise God! Maybe there is a learning curve to getting ready to take a baby out, but Brad and I both thought it might be easier if we stay inside until Mia is about 13...not 13 pounds, 13 years old! It's a lot of work going places...pray for us on Friday, we have to take Mia back to LA for her first visit with the cardiologists...we thought going 5 miles was difficult! Actually, pray for Mia...she's the one who'll have a hard time with the trip...being in the car seat is not her favorite. :)

Monday, December 24, 2007

Christmas Eve


It is hard to believe that today is Christmas Eve! We've been doing well at home with Mia. Both Brad and I have commented to each other...we don't know how single parents do it! Especially being up all night. The good thing about bottle feeding is that we can both share in the feeding process and we can each get some much needed sleep.

Mia has been eating very well, except for last night, so hopefully she'll get back on her regular schedule today. Regular meaning feeding every 2 to 2 1/2 hours rather than every hour...we were hoping she could be on a 3 hour schedule, but she just isn't there yet...we'll let her get a little bigger.

We have our first pediatrician visit on Wednesday, so we are looking forward to seeing if she has put on any weight and exactly how much that is...so we'll keep you posted on that!

Saturday, December 22, 2007

Sleepless in Seattle...I mean Bakersfield

Life is great, we are truly enjoying being at home. And it is very different being around Mia 24 hours a day. She has adjusted very well to being at home. She's eating like a trooper...I wanted to make sure she gets everything she needs during the day, so I've started a food/medicine journal and so far she's been eating far more at home than in the hospital...I guess food at home just tastes better. ;) At the hospital she was taking in about 420 cc's a day and yesterday she was close to 480 cc's. That is encouraging because we definitely want her to gain weight while she is at home. We also have a nurse set up to come visit us a couple times a week to look at her and make sure she is doing ok. She is someone we can call 24 hours a day for advice. That gives us a bit of peace not knowing how the first couple of weeks will go.

The cats have also had to adjust to Mia. Logan is totally disinterested, but Cindy is a bit scared of Mia. When she cries, she runs away and the other night Brad brought Mia into the living room and put her on the floor and Cindy saw her, crouched very close to the floor and slinked away. She's not really sure what to make of this little being.

The doctors advised us not to take her out into large groups of people areas, especially during flu season, so we'll be at home for awhile. But, we don't mind if people want to come and visit, as long as you aren't sick. We'll make you wash your hands real good, just like being at the hospital. :) Of course, don't be offended if we ask you to come a different night because we are too tired, we're just getting adjusted to this home thing.

Thank you all for praying, this is the best Christmas present for us, we're so happy to be home. We know the journey isn't over yet, but we look back and see how much God has accomplished so far, we are blessed. We look forward to what God will do for Mia in the future.

Thursday, December 20, 2007

Home



Thursday morning, Dec 20th, Lisa called the nurse to see how Mia did that morning. The nurse told her "The doctors wanted to surprise you when you got here, but I can't wait. You are going home!" We couldn't believe it. This would be the 4th time we were promised to go home. We didn't want to tell anyone till she was in the car and we were pointed north. It's true. It happened. We are at home and happy and tired. God Bless you all and have a very merry Christmas. Love, Brad + Lisa + Mia

Wednesday - Happy Birthday Mommy

Mia had a good day again. She has been doing really well with her feedings. She gained 6 grams tonight and it may not seem like a lot, but it is still part of an upward trend, so we are thankful.

Today was also Lisa's birthday. I surprised her by taking her to this restaurant called Craft. If you have ever seen the show Top Chef, this restaurant is owned by one of the judges, Tom Colicchio. Anyway, Lisa has wanted to go there for some time and tonight was the night. We had a great time and Tom Colicchio was actually there, which the waiters said was rather uncommon as he has several restaurants all over the country. One of our dishes was octopus, it tasted like tuna. Do-nuts was one of the most popular dessert dishes, which we found rather humorous, but very tasty. It was a nice evening.

Tuesday, December 18, 2007

Tuesday - Thank You Prayer Warriors!


Thank you prayer warriors! Mia had such a good day today. The doctors told us yesterday morning that they wanted to see her gain, at a minimum, 150 grams per week, which is roughly 4 ounces. We found out this morning that last night Mia gained 20 grams and tonight she gained 55 grams! She has been eating every 2 hours and taking 40 cc's in about 5-10 minutes. She has been doing so great, we have been very encouraged. We are very hopeful that we'll be home by Christmas, thank you for praying!

Monday, December 17, 2007

Monday

Mia appears to be tolerating the formula mixed with breast milk, however, the doctors are concerned because she isn't gaining weight, in fact, she has lost weight over the past week. The thought is that she is expending too much energy during her feedings because of her heart issue. She tends to do really well with the first 30-40 cc's of food...she'll usually take that in about 10 minutes, but the last 20-30 cc's is a bit of a struggle and it may take her 20 minutes. And even though they've been adding extra calories to her feedings with corn oil (it looks just like the stuff you cook with)...she's still not gaining weight. So, one of the thoughts of the doctors is that she might need a g-tube. It's a tube that is fitted directly into her stomach, it is attached right at her tummy. She would be fed with a bottle whatever she can take easily and then when she is tired the rest would be put in her tummy through her g-tube. They've tentatively scheduled her to get one of these on Friday, however, if something changes between now and then and she starts to gain weight then they may not do it. In the mean time we've changed her feeding routine a bit, we are now feeding her when she is hungry and allowing her to eat what she can, but not forcing her to finish the last 20 cc's if she is tired. One of her feedings tonight she took 55 cc's in 15 minutes and so we said great, she doesn't need the rest if she is finished. And later she took 30 cc's, took a nap for a bit and then took another 30 cc's. Another concern of ours is that she has started to have some dark liquid in her stool, it is not much, but we've never seen her have output like that. The doctors are not too worried because it is minimal, but as parents we notice any change and start to think, oh no. So lots to pray for...pray that Mia has the strength to finish her feeds in a quicker amount of time, pray that she will put on weight, and pray that her stool is normal.

We also spoke with Lupita's mom tonight and she is still on bypass at this point. We asked her if the doctors gave her any idea how long it would take before she came off the machine and she said that sometimes it takes 4-5 days. Lupita has been on the machine for 2 days now, so pray for her. This is very eye opening to Brad & I because Mia will have to go through this same process in the near future.

Sunday, December 16, 2007

Sunday Evening

So the doctors decided that they didn't want to use donor breast milk because it's so expensive, and they wanted to try other options of formula first. Mia has been tolerating a different type of formula that doesn't taste quite so gross. She has been doing well with her feedings and has been finishing 60 cc's every three hours. The plan is to watch her stool output to make sure it isn't going right through her, and to make sure she is still gaining weight with the new formula and Lisa's milk.
"Give thanks to the Lord, our God and King, His love endures forever."

Sunday Morning

I just called and found out that Mia did really well with the donor milk. She's been taking 60 to 62 cc's per feeding and doesn't balk at the taste. The nurse was giving her 40 cc's of my milk and 20 cc's of the donor milk. There is a concern that insurance may not pay for it if this is something we need to go home on and it can be expensive, but she is worth it. Pray that insurance will pay for some of it.

Of course the best thing is for my own supply to increase, so keep praying for that also.

As far as we know, Lupita is stable, but keep praying for her and her family too.

Saturday, December 15, 2007

Saturday - Milk, it does a body good




Mia has been tolerating her feedings ok today. She definitely doesn't like the taste of the formula because she sticks her tongue out when we feed it to her. She lost a little bit of weight tonight, so her nurse asked if we might consider using donor breast milk and see how she tolerates that. So we signed the consent form, and they will give it to her sometime tonight (Sunday morning). So we'll see if that makes a difference with her feedings. The amount of stool she is making is right on the edge of too much. So that is another reason they are considering the donor milk. Today, we fed her 40 cc's of Lisa's milk and 20 cc's of formula. So, if she takes the donor milk, she might be getting 100% percent milk from now on. We are still optimistic that we will be home before Christmas. Thanks for praying!!!

Friday, December 14, 2007

Friday

Today was a hard day for me as a mom. I want to give my daughter what is the very best for her and yet I can't provide that. And so it is hard for me to watch her struggle with tolerating her feedings thinking, if only I could give her my milk. And yet she is a trooper and does the best she can with what she has. Her feedings have been going so so. We are trying to find the right combination of breast milk and formula. On top of that they have extra things she needs to get throughout the day, like vitamins & iron, which gets mixed in with her feedings and change the taste of the milk. So it has been a bit of a struggle these past two days. Nobody really knows the perfect answer at this point, it is more of a trial and error process. I was encouraged, though, by Galen's email and another email I received from a friend. And I have seen how far God has taken us on this journey, so I know that He has a perfect plan for Mia and her feedings. Thank you for praying, we are so encouraged by that.

Pray also for another little baby we've met in the NICU. Her name is Lupita. She had surgery for a PA Band (the same surgery Mia had), however the band wasn't working, so they changed plans midway through the surgery and put her on bypass to do the surgery she needed on her heart. Pray that it was successful and that she'll recover and do well.

Thursday, December 13, 2007

Thursday

There continue to be ups and downs with Mia. This morning the doctors told me that they were happy to send her home tomorrow (Friday) morning. She was doing well enough that they thought she was ready. But by this evening, it looks like our going home will be postponed a bit longer. This afternoon she wasn't tolerating the half formula, half breast milk. She had a lot more stool output, which means she wasn't processing the food, it was just going through her. And since I'm not making enough breast milk, the doctors are going to try her on a gentler formula tonight. It is more like breast milk and it is easier to digest with sensitive stomachs. She took her first feed of the new formula at 8pm and I was encouraged by how similar it looks to breast milk. She did well with the feed, so we'll see how she does tonight and tomorrow on this new formula. So pray that this formula sits well with her stomach and she is able to digest it and get all the nutrients out of it. She also had a bit of a fever this morning, so she got some more Tylenol...I think it was related to her vaccinations yesterday. She was rather lethargic all afternoon, however, this evening after her feeding she was very alert and checking everything out. So, hopefully, she'll be back to her normal self tomorrow and have adjusted to the new formula/breast milk mixture.

Wednesday, December 12, 2007

Wednesday - Happy 2 Months Mia!

Mia had quite a day on her 2 month birthday! At 11am I tried breastfeeding for the first time with her and she did quite well. Now some of you might not want all the details for breastfeeding, but what I will say is that she latched on very well for her first time. Mia also has officially caught up to me on my milk production and so she got formula for the first time today. It wasn't her favorite, but she did take the formula. So you can pray that I'll produce more milk and that in the mean time she'll handle formula ok.

Because Mia is 2 months old, we decided that today would be vaccination day. So she received 4 shots, or shall I say pokes, today. The first 2 she handled very well, but she didn't like the next 2. She did get some tylenol beforehand and continued to get some after to help her with the pain and to prevent any fever.

They also took out her PICC line today. It is a relatively painless process except for taking off the tape that was stuck to her head to keep it in place. Needless to say all of this made for a rather upsetting afternoon. As a result, she didn't feed too well at her 2pm feeding and her 5pm feeding. She's supposed to take 56 cc's, but she only took 40 cc's at both feedings. The thought is that the tylenol was making her a bit sleepy and the vaccinations didn't help. Hopefully by tomorrow she'll be back to her normal self.

There is still talk of sending us home, however, it may not be until Friday or Saturday at the earliest. We continue to be patient and wait on God's timing for that.

Tuesday, December 11, 2007

Tuesday

Mia had another good day today. She is still drinking 56 cc's every 3 hours and appears to be tolerating it very well. She had an echocardiogram today and we will hear back tomorrow on the results of that. It still looks as though we may be going home this week, but no one has given us an official yes or no yet.

Mia had another hearing test today, not because she needs it, but because the gal who does them didn't realize she already had one done. She passed with flying colors. :)

Monday, December 10, 2007

Monday

Mia had a great day today. She is up to her maximum feeds of 56 cc's every 3 hours and she is doing a great job with them, in fact, the occupational therapist was working with her at 11am and said that her sucking is so much better! Her maximum feeds will continue to increase as she continues to gain weight, however, she's at her current maximum right now.

I asked the nurse how much she weighs and she said that last night she was 7 pounds 4 ounces! She continues to put on weight which is really great.

There is talk of us going home this week, maybe Thursday or Friday depending on how she continues to do. If she continues to tolerate her feeds and the cardiologists are happy with how she is doing then we could be home on Thursday! She was born on October 12th so on Wednesday she'll be 2 months, it would be awesome if we could come home Thursday or Friday.

Sunday, December 09, 2007

Sunday - Good News

Mia took 52 cc's today from the bottle several times, and because her weight is now 7 pounds, her maximum feeding has been increased to 56 cc's every 3 hours. So, tomorrow, they will increase her feeding to 56.

A charge nurse came up to Brad today and said, "I heard a rumor you were going home soon." Brad replied, "I started that rumor." No, Brad wasn't that witty, but we have excellent news that we are going home very soon, maybe even this week! Thank you for all your prayers, we are definitely reaping the benefits of God's grace.

Saturday, December 08, 2007

Saturday - The Lord Is So Good!


Today started off just as any other day. We headed to the hospital in time for Mia's 11:00am feeding. When we got there her nurse said that she had a hard time all last night with her feedings and this morning also. She was taking maybe 15 cc's by bottle and getting the rest gavage (a tube through her mouth to her tummy). So we did our usual routine of taking her temperature and changing her diaper to try to wake her up a bit before her 11:00 feeding. The nurse gave us her bottle (48 cc's now...she's up to full feeds) and we attempted to see what she would take. She was barely able to take 1 cc. So the nurse gave her the full feed by gavage. Brad and I were so discouraged, to the point of tears, and so we stopped a moment to pray, that God would help Mia to take the food she needs from the bottle. In the 8 weeks that Mia has been here she has had some set backs, but I can't ever remember being discouraged. It felt like such a set back for her to have to have all of her feedings by gavage and she now had a tube back in her mouth, something that she had finally gotten rid of.

So around 12:00 one of the cardiologists came in to see how she was doing and I explained to them how she's been so tired and sleepy lately and now she is no longer feeding by bottle. He looked at her and said she looked fine and that sometimes with cardiac babies they'll get to full feeds and still be full at the next feeding so they don't want to take a bottle, but in a few days their tummy would adjust and they would have that hungry feeling and will feed well from a bottle. So Brad and I decided to be patient and give Mia a few days to get back to where she was.

At 2:00 it was time for her next feeding and her nurse and I decided we wanted to put a tinier tube in her mouth. Since we were going to be changing the tube, we decided to take it out and give her a chance with the bottle again without a tube in her mouth. She did so well! I was in awe when she took the entire 48 cc's by bottle...in about 20 minutes. (The goal is to get the feed done within 30 min.) Brad and I both were humbled at God's answer to prayer so quickly. And we were so happy that for at least 3 more hours she wouldn't have a tube in her.

At 5:00 we didn't know what to expect, would she feed well or be so tired from the last feed that she couldn't do it again. Again, she did so well with the bottle, she took 46 cc's in 30 minutes. And then again at 8:00 she took the entire bottle! It was so encouraging for us to watch God take care of even the smallest details for Mia. The task of taking her bottle seemed impossible to us, but God has again shown us through his power, nothing is impossible. And we know that we haven't been alone in praying for her today regarding this! God is so good! Words don't do justice to the amount of praise He deserves.

Friday, December 07, 2007

Friday


What a day. Mia is 8 weeks old today, but not two months old (?), that won't happen till Dec 12th. They increased her feeds to 42 cc's every 3 hours, and she just can't keep up. She drinks as much as she can from a bottle, usually about 30 cc's, and they put the remainder in the tube down to her stomach. Their was a difference of opinion in her healthcare providers whether to continue to add volume to her milk feedings (doctor) or stay the same (nurse). The doctor won, so we are still at 42 cc's and I hope we stay the same, or possibly go back to the 30's. Mia is so tired from trying to eat. She is just exhausted after every feeding. It's official! today, she weighs 7 pounds.

Tonight, we went to a christmas dinner at Grace Community Church in Sun Valley. I would like to thank Giovanni, who with help, cooked for 200 people. (All of it was delicious!) and Hohn Cho, who used his mad blackberry skills to arrange a ride for us, and our newest friend, Miranda, who was so generous to give us a ride to the church and back. I imagine, this was a small picture of what heaven must be like. So many wonderful, friendly people that you don't know, but who share your same joy in Christ, and welcome you with open arms. I asked Lisa tonight, "Do you know how blessed we are?" It just boggles my mind. Mind Boggling!

Thursday, December 06, 2007

Thursday

Mia had a very good day today. Her feedings have gone up to 36 cc's every 3 hours. She is taking all of that by bottle, however she does tire easily by the end. Pray that she'll continue to grow stronger with her feeds as she'll need to eventually get up to 48 cc's every 3 hours. She has also been putting on weight and she is now 6 pounds 15 ounces...really close to being a 7 pounder!

Tonight while we were bathing her she was getting rather upset and Brad said, "oh, she's hungry"...of which Lisa responded, "she's not hungry". However, after thinking about it Lisa realized she was hungry because she was scheduled to feed at 8 and it was already 8:20...Dad knew! It's amazing how when she was born she was fed completely through IV fluids and didn't get fussy, but now that she has been fed real food she knows the feeling of not having anything in her tummy and she doesn't like it.

Wednesday, December 05, 2007

Wednesday


Mia continues to do really well with her feedings. She is now up to 30 cc's every 3 hours, the same as 1 ounce. She continues to take all her feedings from the bottle and is doing very well with it. And she has been having a lot more "awake" time.

Mia has also been wearing a brace on her right hand because the occupational therapist was not happy with how she was bending her wrist and thumb. She does not like to wear the brace and is usually very unhappy about putting it on. (They've been rotating it on for several hours, off for several hours.) Well, today she graduated from wearing her brace and now only has a band to keep her thumb in the correct position. This is the same type of band she has on her left hand also. She doesn't mind the band so much, so we were very happy that she no longer needs the brace.

***in the picture she has the brace on her right hand and the blue band on her left hand, Mia now has two blue bands***

Tuesday, December 04, 2007

Tuesday

Today was another good day for Mia. She is up to 24 cc's with her feedings and she is taking all of it by bottle. God is good!

On a different note, Lisa got rear-ended today on the way home from the hospital. Thankfully no one was seriously hurt aside from minor aches and pains. We took Lisa to the ER just to make sure she was ok, particularly because she had a c-section 7 weeks ago. And she is fine. The car is drivable, however it will need quite a bit of repair work, we'll see what insurance says tomorrow. We are just very grateful that Lisa is ok.

Monday, December 03, 2007

Monday


Mia has been gulping down her milk today, 18 CCs every 3 hours, all from a bottle! That is so exciting for us to watch, and makes us super optimistic about feeding her when we take her home. Also, they took out the feeding tube taped to her chin, and she is able to feed great without it! Lisa learned how to "play" with her today, pushing against her legs to provide resistance for muscles, and gently pulling on her arms. Mia really enjoys her new mobile, complete with soothing jungle sounds. ( I personally don't find being lost in a jungle soothing, but hey ,that's just me - Brad)


Sunday, December 02, 2007

Sunday

Ok...point of clarification...the doctors do not test Mia's stool for sugar, the reason they knew she wasn't getting everything out of her feedings was because she was stooling too much. Since they cut her back to 12 cc's every 3 hours she has been doing much better, so they are hoping as she slowly increases, she'll be able to handle the bigger feedings.

On a different note, Brad got to feed her with a bottle twice today and she did great. It took her awhile because she's not used to being fed that way, but we are encouraged that the more she works with it the better she'll do. Lisa told Brad he's doing such a great job feeding Mia that it might become his job at home. :)

Saturday, December 01, 2007

Saturday

The feeding process has definitely had its ups and downs with Mia. Today the doctors changed her feeds to only 12 cc's every 3 hours because she was still processing them too fast. They think that she'll be at 12 cc's every 3 hours for the next couple of days and then they'll slowly increase her feeds from there. The thought is that they may have increased her feeds a little too fast. Pray that she is able to process all the nutrients she needs and slowly get back to where she was before. The doctors also said that her kidney ultrasound was fine so they are no longer worried about that. She has a small kidney stone (not like an adult kidney stone) which may be linked to one of the medicines she gets every day. The doctors say the kidney stone should dissolve on its own and it won't need to be passed like an adult kidney stone.
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