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!