Tuesday, December 30, 2008

Merry Christmas! (A Little Late)

We had a wonderful Christmas with the Sandersons, Wahlers, and Cases. What a joy it was to spend our first Christmas with Little Suzie. Of course she had no idea what was going on, but we are so thankful to have her home with us for Christmas. Here are some fun pictures and I hope to post a video of her laughing and gabbing soon...we are enjoying hearing more and more of it every day!






Monday, December 22, 2008

Blessing Upon Blessing

Five months ago our lives were shaken up more than we could have ever imagined. In less than 24 hours we went from having the most normal, healthy pregnancy we could have asked for, to having to deliver our little girl 12 weeks before her due date and having to see her in critical condition. When the doctor told me he likely would have to deliver Little Suzie within the next few days, I remember thinking that I would never see my little girl alive. I had no idea how many babies could survive being born so early. I remember the day after she was born the doctor said to us, "Your baby is very sick. We think that she may have a 40% chance of living. Let's hope that she is on the right side of the odds." Thankfully, we know that we don't have to try to "beat the odds." We have a most loving, sovereign God who has every detail of life planned from before time even began! We had no idea what the next few months would look like and now that we are here, five months later, I am overwhelmed with how gracious our Lord has been to us.

The first several weeks of Suzie's life, while she was in the most critical condition, people would always ask us if we ever struggled with asking God why...why us? This morning I found myself asking God why...why would He choose to bless us so much? Suzie has come so far and has exceeded all of her doctors expectations. As we have dear friends whose children are still in the hospital and one family that had to say goodbye to their little girl not too long ago, we see that God has shown us so much mercy and blessed us more than we could have ever even asked for. We praise Him for what He is doing in our lives through our little girl and for showing us what a privilege it is to be a part of His body.

All that to say, Suzie is doing very well:) She weighed in at 9 lbs. 11 oz. on Friday...almost 10 pounds! She is just a few days past her five month birthday. Per the doctor's recommendations we are still going to keep her from large crowds through the cold and flu season. But she is enjoying going to people's homes and having visitors come over. She is such a people person and just loves to be held...all the time:) She naps better on the sofa than she does in her crib and can sleep 7 hours at night before I have to wake her to eat. She is constantly putting her hands in her mouth, is tracking much better with her eyes, and getting a lot better at lifting her head. She is cooing up a storm and laughs on occasion. I think that we tell her how cute she is at least 20 times a day. She is one loved little girl. Here are some of her most recent pictures...my favorite is the one of her with daddy.



Thursday, December 11, 2008

Sweet Girl

Thankfully Suzie is doing better these past couple of days. We tried virtually every suggestion you all offered (thank you all so much for sharing your helpful tips!) and Suzie was provided a little relief at times. We were able to go to her new pediatrician on Monday and she told us that Suzie isn't constipated, just gassy. So sad! So I am giving her gas drops 6 times a day and it seems to be helping at least a little. She is eating more and her pipes seem to be working a little better, so I'll take it!

The good news is that I really like Suzie's new pediatrician. She is located in Pasadena right by Huntington Hospital. We picked her because we wanted to be able to go to all the same specialists. The doctor was very friendly and seemed very knowledgable. She took the time to sit down and get to know Suzie's situation and had several recommendations for us. She is going to refer Suzie to a pulmonary specialist to follow up on her need for oxygen while she is feeding. She even called me personally this morning to let me know that all of Suzie's blood work was good! So I'm so thankful to have a reliable pediatrician for our little girl.

Here is a fun video of a happy Suzie...as I type this I have a not so happy little girl needing my attention:)

video

Tuesday, December 2, 2008

Poor Baby

Suzie has had a rough couple of days. We think that she is a little constipated and she has also been vomiting a little. I was wondering if it could have anything to do with the formula I supplement with. She has just been pretty unhappy and seems like she is in pain sometimes. Any of you moms out there have any advice for how to help a constipated baby?? Or tips on what kind of formula to use? Any suggestions are much appreciated:)

Other than that, our sweet girl is doing very well. We had a great first Thanksgiving with her and everyone enjoyed taking their turn to hold her. One of the best things is that Suzie laughed for the first time on Saturday! It was a very short little giggle and if I hadn't been looking at her expression I wouldn't have known it was a laugh, but she did it two more times on Sunday. She smiles a lot too, although Daddy says not often enough for him. She is starting to be awake for longer periods during the day, which is very fun (except for the past two days). She has many fun expressions and we pretty much just dote on her all day long.

We try out our new pediatrician on Monday so hopefully that will go well! Here is a video of our happy girl.


video

Monday, November 24, 2008

Scoot, Scoot, Scoot

Suzie has turned into quite a little scooter! When I put her down for a nap on her tummy, she manages to scoot her way out of her wedgie to the front of the crib. Here is a pic of what I found the other day when I went to get her.

The occupational therapist came to do an evaluation last week. She said that Suzie is developmentally tracking like a 2 1/2 week old baby. Her corrected age is six weeks so they would like to work hard at closing the gap while she is still so little. So they have recommended 2 hours of physical therapy, 2 hours of child development, and 1 hour of occupational therapy every week. With 5 hours of therapy per week we are going to be quite busy! But we are so thankful for this service provided by the state. Two of the three therapists will come to our home to work with her and they said that we can cut back on hours if it gets to be too much. We have to wait for the regional center to approve the hours so hopefully we will be able to get going in three to four weeks.

Also, we went to the ophthalmologist on Saturday and he said that her eyes responded very well to the laser surgery so that is a praise. He doesn't need to see her for another two months!

Everything else is going well for us here. Suzie has some great nights where she will go six hours between feedings. I love those nights:) She has other nights, like last night, where she cries until 4am. But we praise God for a healthy (and usually happy) little girl home with us.


Tuesday, November 18, 2008

4 Months Old!

Suzie is four months old today! We went to the pediatrician this morning and here are her current stats:

Weight: 8lbs 2oz
Length: 21.5 inches
Head Circumference: 14 inches

Suzie is doing great! She received her four month immunizations which was a very sad thing. She cried and cried and has been conked out on the couch ever since. The doctor said she is a little behind on her weight gain so I'm going to work on trying to get her to eat a little more each feeding. If she does well with that, then he said I can go ahead and let her sleep up to 7 hours a night. The past four nights she has slept for 6 hours straight and I had to wake her to feed her. It is a wonderful blessing to get a little more sleep, so hopefully she will keep it up and still be able to gain weight. She is such a sweet and content little baby, except for her brief fussy time each day.

Our follow up with the eye doctor is tomorrow morning so we'll post another update then!

Friday, November 14, 2008

Praise the Lord!

We have so many reasons to praise the Lord today. Suzie's surgery went better than we even could have hoped. She was an angel all day even though she didn't get to eat for a whole 13 hours! We waited for over five hours at the hospital and when she was finally taken in for surgery, the doctor came out 20 minutes later and said everything went really well. We thought he was joking because we couldn't imagine that they were done already! Because Suzie was so calm, they were able to do the surgery without having to give her any kind of anesthesia. She only received Tylenol. This helped the surgery and her recovery go very quickly. We were able to take her home two hours later and she has been sleeping soundly ever since. The doctor is confident that the surgery worked and we have a follow up appointment on Wednesday to see her progress. Thank you so much for your prayers. We are so thankful to the Lord.

Another praise is regarding our friends Justin and Victoria. Their baby, Moriah, had a critical heart surgery today that was so risky, they had to go all the way to Stanford to even find a doctor willing to do the operation. God is so faithful and allowed Moriah's heart to be healed today. You can read their encouraging story here.

Wednesday, November 12, 2008

Surgery Day

So it looks like Suzie will be having her laser eye surgery this Friday. We still don't know what time they will do it, but they are trying to fit her in some time in the morning. We will let you know how it goes. Thanks so much for your prayers!

Tuesday, November 11, 2008

Two Wonderful Years

Today is our two year anniversary! I can hardly believe we have been married for two whole years and yet I feel like we've been together forever at the same time. I am so thankful to the Lord for the gift of a godly husband. There is no one I respect, enjoy, love, or treasure more and I am blessed beyond measure!

On another note, Suzie's surgery will most likely be on Friday. We'll let you know when we have more details!

Thursday, November 6, 2008

Laser Surgery

Our appointment with the ophthalmologist on Tuesday went okay. The ROP in her eyes has not gotten any worse but it hasn't gotten any better either. The doctor decided that he wants to go ahead and give Suzie the laser surgery since her eyes are not getting better and she is so far past her due date. We were concerned about a complication with our insurance as I had recently switched groups and wasn't sure if my new group would authorize the surgery. But the Lord is so faithful and He provided for us to be able to switch back to our former group for the time being. So we are waiting to get a surgery date from the doctor, but Lord willing we will get it taken care of some time next week. The surgery is much less invasive than her prior two surgeries. They will give her gas to make her sleepy and she will need to stay in the hospital overnight to have her breathing and heart rate monitored. It will take less than an hour and the doctor says she has an excellent chance of having great vision, although she may lose about 5% of her peripheral vision from the surgery. She will most likely be near sighted and need glasses. God has been so faithful with our little one thus far and there is no reason for us to not completely trust Him with this next hurdle; however, it is of course difficult for us to have to see our sweet little girl go through another surgery. We do appreciated your prayers and will let you know when we have a date set!

On a positive note, our appointment with the Neurosurgeon went great! Suzie's shunt is working well and she is past the risk of infection. He also informed me that he placed enough tubing in her that she will not need any sort of revision unless her shunt malfunctions somewhere down the line (which is a definite possibility). But we are so thankful to God for how well our little girl is doing.

Thanks for keeping up with us! We are so blessed:)

Sunday, November 2, 2008

A Big Weekend for Little Suzie

We celebrated Suzie's first Halloween on Friday. Of course, since she can't go out into large groups of people yet, we celebrated Halloween in the comfort of our own home. But Mema got Suzie a Raggedy Ann costume, and although it was made for newborns, it was way too big on our little girl. She still looked so cute in it.

Then on Saturday night, Suzie attended her very first Texas Tech football party! This was her first outing other than our daily walks and regular appointments. Our friends Bryan and Lindsay Payne threw a great party at Chad and Carly Brannon's house to watch the big game where No. 7 Tech played No. 1 Texas. It was a very exciting game and even better because Tech won! Lindsay threw a great party with a tortilla throwing contest, a Texas helmet pinata, and Suzie won the most spirited outfit award. She did great on her first outing and only cried a few times when the cheering was especially loud:)


Other than that, Suzie is doing very well and enjoying her life at home. She is eating a ton and growing bigger by the day. Here are a few more pictures of our Suzie-Q.


Next week is a busy week for us. On Tuesday we go to the eye doctor, Wednesday to the Neurosurgeon and Thursday back to the pediatrician. We'll let you know how everything goes!

Friday, October 31, 2008

Reese Renee Kostjuk

For those of you who haven't heard, little Reesie went to be with the Lord yesterday, on her first birthday. Todd and Ashley Kostjuk watched their little girl go through so much over the past year and are finding comfort that their precious daughter is now perfected in heaven with her gracious Father. Please pray for them as I can't even begin to imagine the pain that accompanies the loss of a child. What an amazing testimony of God's grace this family has been and will continue to be. You can read their encouraging and God-honoring post here.

Sunday, October 26, 2008

Prayer Request

On Saturday we took Suzie to the ophthalmologist to follow up on the development of her eyes. Preemies are at high risk of developing Retinopathy of Prematurity (ROP). When a baby is born early, their eyes are very underdeveloped, and the oxygen they receive to aid them in breathing can effect the development of the blood vessels in their eyes. Babies with Hydrocephalus are at even higher risk of developing ROP. Suzie currently has stage 2 ROP. We will continue to go back to see the doctor every week until one of two things happens. Either her eyes will correct themselves and she will not need any treatment other than possibly needing glasses later on down the road. Or the ROP will become more aggressive and they would have to do laser surgery to prevent her from becoming blind. Please join us in praying that her eyes would begin to develop so that she does not have endure another surgery. We know that the Lord is in control and yet we also know that He delights in answering our prayers. Thank you for praying and we'll keep you posted!

Thursday, October 23, 2008

Life at Home

Well we have been home with Suzie for six days and things are going so well! The first two nights we had Suzie sleeping in a bassinet right next to our bed. She cried all night long except when we held her. I got less than two hours of sleep both nights and we knew something needed to change. I noticed that she would be okay when I put her in the bassinet until I turned the light off. So we realized that she seemed to be afraid of the dark. They always had lights on at the hospital so she had never experienced it so dark before. So we moved her into her nursery and left a light on for her and she has been doing much better ever since. Now I get closer to five hours of sleep a night which is pretty good for having a newborn baby!

We were having trouble getting her to drink her bottles for a while. She would only take 1/2 to 3/4 of each bottle we offered her. I was getting concerned about her weight gain, but we went to the pediatrician on Wednesday and she had gained 7 ounces in just four days! So she is doing fine on her weight gain. Everything else looked good too. We realized later that day that the reason she isn't drinking very well is because she doesn't like all the things they were having me add to her milk to help her weight gain. I have been adding a teaspoon of formula, a teaspoon of rice cereal, and a dash of vegetable oil. Once I stopped adding these things she drinks a lot more milk and very quickly! So we are so glad that she is able to drink much better now.

Suzie has enjoyed spending time with both of her Grandmas...even though neither of them would prefer to be called, "Grandma" :)

Nana was able to visit her from Kansas this past week


and Mema is able to come by and visit several times a week


We enjoy putting her in her swing...but she doesn't always care for it


One of her favorite things is to be able to spend more time with Daddy now that she is home


Suzie has learned to roll onto her side so I had to put the wedgie in the crib to keep her from rolling over. As you can see, it didn't really do much good:)


Here's a little video of our girl in her swing
video

What a joy this past week has been with our precious Suzie finally home with us! We praise God for bringing her home to us so quickly and so healthy! How merciful He is to us.

Saturday, October 18, 2008

Home at Last!

Three months ago our precious little girl entered the world. Yesterday, she entered our home for the first time! We spent most of the day on Friday getting prepared for her here at home. We had hoped to bring her home that night, but there were a few snags in trying to nail down her pediatrician. So Saturday morning we headed off to the hospital where we packed up all her stuff, met with the nurse and doctor, and headed home with our baby girl! It was her first time to be outdoors...unless you count when she was transferred from Glendale Adventist in an incubator the night after she was born. She was an absolute angel in the car and slept the whole way. She pretty much slept all day yesterday, except for her feeding times. Kyle seemed to think that she is going to be this sweet and content all the time…and then last night happened. Our little Suzie decided that night time was a good time for awake time. She kept us up until about 4:00am, and then I still had to get up every two hours to feed her. Needless to say, we are both very exhausted…and only after one night! But it’s so worth it to have our sweet girl home with us.


Aside from needing oxygen during her feeds, she really seems like any other newborn baby. Because she still has a little bit of lung disease and is more suseptible to infection, we will not be able to take her out into a crowd of people for a couple of months. It will be very hard for me to stay mainly in the house for that long, but it is a privilege to be able to make sacrifices for our precious little girl.


It is so much fun to have her here with us and we praise God for how far He has brought her in the past three months. Thank you all for your faithful love and support for us!


Here are a couple of short videos of us leaving the hospital and some pictures of her at home:)

video video




Thursday, October 16, 2008

Day 90

Today marks Suzie's 90th day in the hospital and what a whirlwind of a day it has been! When I arrived at the hospital this morning, I was so pleased to find my precious little girl fast a sleep and still have no tubes on her face. I knew that meant that she had taken all her bottles. As I was contemplating waking her up to get her ready for her next bottle, the nurse casually mentioned that the doctor had been in to see her and he said Suzie would be coming home either tomorrow or Saturday. WHAT???? Are you kidding me? How did that happen? A rush of questions came flooding out of me as we just had no idea how close she was to coming home. I spent the next several hours talking with the nurse and the social worker, picking up her prescriptions, and making phone calls regarding Suzie's pediatrician, eye doctor, and arranging to have her oxygen delivered at home. Then I picked up Kyle and we headed home to gather our stuff as we will be staying at the hospital this evening. We will be "rooming-in" with Suzie at the hospital this evening and if all goes well, she very well could be coming home with us tomorrow night! She will have to pass her car seat test and her oxygen will need to get here tomorrow as well. We will definitely keep you posted on what happens! I am definitely feeling a bit overwhelmed, very excited, and a little scared. I know that our God is faithful and that He is in control and that His hand has been on her this whole time and will be on her as she comes home. Please continue to pray for us and for Little Suzie. What an exciting time this is for our family!

28 Reasons

Today is my beloved husband's 28th birthday. Over the past three months, I have grown to love and respect him even more through this trial that the Lord has allowed us to experience together. I wanted to take this chance to honor Kyle by sharing 28 reasons why I love him, although I could list a whole lot more!

1. Kyle is so passionate about Christ and His Word
2. He loves people more than anyone else I have ever known
3. He makes me laugh
4. He spures me on in love and good deeds
5. He loves to teach God's Word
6. He is a true shepherd of God's people
7. He sees God's faithfulness in every situation
8. He is such a hard worker
9. He takes his responsibilities very seriously
10. He is so humble (by God's grace!)
11. Kyle is compassionate
12. He is quick to forgive
13. He is quick to ask for forgiveness
14. He loves to pray and read God's Word
15. He always want to be growing
16. He is a good listener
17. We have so much fun together!
18. He is above reproach
19. He is so tender with his little girl
20. He is very sacrificial
21. He is always thinking about furthering God's kingdom
22. He loves to meet people's needs
23. He expects nothing in return
24. He is faithful
25. He loves to bring joy to people
26. He is very generous
27. He is a great leader
28. Kyle is my best friend

I love you so much, Kyle! I praise God for bringing you into my life three years ago. I love being married to you and I can't wait to see what the Lord has planned for us in the future. Happy Birthday!!

Wednesday, October 15, 2008

Some More Progress

Suzie had a great day yesterday. Her breathing has been getting better, so they decided to take her off of oxygen again, only this time they will put her back on oxygen every time she eats because that is what wears her out. She has been doing well with that for the last 24 hours and so we hope that when she comes home, she will be able to only require the oxygen when she is eating. It would give this momma a little peace of mind to have the oxygen near by when we bring her home anyway:)

Another big step for Suzie is that they started to offer her a bottle for every feeding! They decided they would let her take as much as she wanted without wearing her out and then give her whatever she didn't drink through her feeding tube. I just got off the phone with the nurse and they have removed her feeding tube because she has taken the last 8 full bottles in a row! This doesn't mean they won't have to put the tube back in later, but it is wonderful that she has been able to take so many in a row.

Our doctor is pretty confident we will be able to bring her home some time before November, which is just two weeks away so we are thrilled! Kyle and I are having so much fun with our precious little girl and can't wait until we don't have to say goodnight and leave her any more. God has been SO faithful to us. I sing the song, "Great is Thy Faithfulness," to Little Suzie every day so that I am constantly reminded of His goodness and grace toward us.

Thank you for continuing to follow us through this journey!

Monday, October 13, 2008

A Step Backwards

Well we were warned that this would be a roller coaster ride and we just experienced another little dip. Suzie did so well off oxygen for three days. She was awake for good portions of the day, continued to drink her 5-6 bottles per day very well, and was breathing better than she ever had. But I think all the work caught up to her and they had to put her back on oxygen on Saturday morning. She was just so exhausted this whole weekend. She is still on a low flow of oxygen and doing well. She is finishing most of her bottles, but they won't try to give her 8 bottles/day until she finishes every last drop of every bottle. So it looks like we won't be taking her home this week, but we are still hoping she comes home some time this month. We'll keep you posted!

Please continue to pray for her development and for us to trust in the Lord and be patient. We heard an excellent sermon from Nathan Busenitz in church yesterday. He was talking about how our hope can only be in God during the financial uncertainty that our country is facing. Kyle and I both applied this to our situation right now and it was a great reminder that we can only hope in God during this uncertainty with our little girl. He is in control of every detail of our lives and we can hope in His wisdom and goodness!

We're pretty much ready for her here at home. Here are some pictures of the nursery that awaits her...

Friday, October 10, 2008

Suzie's Due!

Well today is a very strange day for us as it is Suzie’s original due date. 10.10.08 is the day that we expected our little girl to come into the world, and yet she is already 12 weeks old!. I thought it would be fun to give her stats as of right now compared to what they were when she was actually born:

Due Date—10.10.08
Weight: 6 lbs 2 ounces
Length: 20 inches
Head Circumference: 13 inches

Birth Date—7.18.08
Weight: 1 lb 14 ounces
Length: 13.5 inches
Head Circumference: 9.5 inches

She has grown so much! As we posted yesterday, Suzie was able to come off of oxygen on Wednesday morning. This was a very exciting day for us, as we were prepared for her to have to come home on oxygen. There is still a possibility that she would have to go back on it, but the fact that she has been off of it for two full days now is very encouraging. Sometimes she gets so fatigued from eating that she requires a little help from the blow-by, but even that has been very infrequent.

Also, she now can take two bottles in a row, but will be a little too tired for a third bottle. She has come so far in the past week and a half with her feeds. A week and a half ago she drank her first full bottle for the first time and now she can take 6 full bottles a day, so we are seeing tremendous progress with our little girl! She also is awake for a lot longer in the day so we are having so much fun with her.

The doctor still won’t give us any estimate as to when we can expect our little girl to come home with us, but our Occupational Therapist warned us that they might not let us know until the day before she comes home! She told us to expect that she might be able to come home in the next week or two. :)

We praise God every day for his kindness to us. Suzie is truly a constant reminder to us of how gracious the Lord is and how He gives us far more than we deserve. We desire to live every day in complete surrender to the Lord, always aware of His constant faithfulness.

Thursday, October 9, 2008

Guessing Game

Notice anything different about Suzie??
video

Well, everyone seemed to notice right away that Suzie has no tubes in her nose any more! The exciting thing is that she came off oxygen yesterday. But we did want to clarify that she is still receiving food from her feeding tube for every third feeding. They were changing the tube here so I got to see her with no tubes on her face for the very first time! I'll post some more details tomorrow:)

Saturday, October 4, 2008

Making Some Progress

This has been a pretty good week for Little Suzie. She actually took her first full bottle at the beginning of the week! Since then, she will finish about half of the bottles we offer her. Otherwise she will usually drink about 2/3 of the bottle which is pretty good for her! Much better than last week so we are grateful. They are now offering her a bottle every other feeding, which is four times a day, assuming she is awake enough. She is doing a much better job pacing herself so we hardly have to cue her to breathe anymore. What improvement! We do still have to turn her oxygen way up when she eats or she will desaturate a lot.

Regarding her oxygen, she is now on the lowest amount of flow that she can be on, with her oxygen around 30-40%. It's a small catheter that only goes in one nostril. We are still very aware that she might come home on oxygen, but she is making small steps in the right direction.

She is beginning to be awake for longer periods of time throughout the day, which is very fun for us. Sometimes she is pretty fussy, but other times she is just wide awake and content and looking all around. She smiles all the time especially when we sing to her. She loves to be held so I spend most of the time that I am there holding her in my arms and rocking her.

Her shunt is still working very well and a recent ultrasound shows that her ventricles have dramatically decreased in size! She now is just under 6 pounds and over 19 inches long! I can hardly believe she is the same baby. It is getting harder and harder for us to leave her each night. Everything is coming together in her nursery here at home. We are praying that the Lord would allow her to come home some time this month.

Please continue to pray for her progress and for us to continue to depend on the Lord for everything. We have so much to praise God for.

Thursday, October 2, 2008

Dinner with Friends

Last night we spent a wonderful dinner with our new dear friends, Justin and Victoria Nelson. Their daughter is 8 months old and was diagnosed with CHARGE Syndrome. She has had several surgeries and is awaiting a very crucial surgery on her heart in November. She is currently at home on oxygen, with a feeding tube, and requires regular care from nurses. Little Moriah is an inspiration to her parents as she constantly endures so much. She and her parents are an inspiration and a HUGE encouragement to us. We instantly connected with these dear saints and are so humbled by their dependence upon our Lord through this very tough time. We just know that we will be friends with this precious family for life and hope that we can encourage them as they continue to travel on a very difficult road. This is their blog if you would like to read their story and join us in bringing them before our gracious God in prayer.

How grateful we are for the body of Christ!