Fun with Suzie

Last night we had such a great time holding Suzie. She smiles a lot when we make different sounds. She's not much of a show off though so every time we have the video camera on her, she doesn't smile quite as much.

Here's a pic of her fully dressed too!

Better Days for Bigger Suzie

Well, this week has better for our little girl than the weekend proved to be. With each day after we sent our last update, Suzie started to get progressively better. She is now back to having her oxygen set between 21% (room air) and 30%. They have to increase her oxygen when she begins to eat so they think it is hard on her little body to digest and breathe at the same time. She is still experiencing the periodic breathing, but her heart rate is much more stable. Also, they have seemed to have found the right amount of fluid to drain from her head each day to keep her head from getting bigger. They pull out 25ccs a day and her head hasn’t grown for the past several days. And we are able to hold her again which is wonderful!

We are waiting to hear from the Neurosurgeon as to when the shunt surgery is going to be. But our doctor anticipates they should be able to do the surgery some time next week since she is gaining weight so nicely. We will let you know as soon as we have the date nailed down. We really appreciate your prayers for Suzie’s surgery, as we anticipate this one will be harder on her than the previous one.

Our little girl is packing on the pounds! Last night she was just over of 4lbs. That’s more than double what she was when she was born. And it is showing too. She has such chubby cheeks now and the rest of her body is starting to fill out as well. I included a couple of pictures so you can see how different she looks. She’s the same sweet, beautiful little girl, but now there’s even more of her to love.

The Lord is truly using this trial to purify and grow us. One of the ways in which God is growing me spiritually during this time is by revealing my sin to me. God is showing me how much I lack in truly loving other people more than myself. I am seeing how it is easy for me to desire my own best interest more than the interest of others. God is so gracious to reveal this to me and I pray that by His grace I will turn away from my selfishness and truly care more about others than I do for myself.

We can never end one of our updates without thanking you for your faithfulness to pray and encourage us. It really means the world to us. So thank you!

Please Continue to Pray for Suzie

Well, it has been a rough few days for us here. I suppose we shouldn't be all that surprised since we have been warned on many occasions to expect a lot of ups and downs on this journey of ours. After several very up days, which we are so grateful for, we have had a few down days in a row. Suzie had been doing so well that when they needed a bed in her nursery freed up (for the most critical babies), she was chosen to "graduate" to the next nursery. While this was very exciting, she didn't seem to respond so well to her new home. On Thursday when they moved her, she had a tough time with the transition. Her heart rate would drop, she would experience periodic breathing, and they had to significantly increase her oxygen. We didn't get to hold her or even touch her much at all that day. Friday morning, she seemed quite a bit improved. They let me hold her, however, she didn't respond so well to it and they had to put her back. This was heartbreaking because she has always seemed to respond so well to us holding her. That night she continued to fluctuate a lot in her breathing and experienced quite a bit of apnea (where she just stops breathing). They contemplated moving her back into her old nursery, but by Saturday morning, she seemed quite improved again, so they decided against it.

Last evening was the hardest part. The Neurosurgeon advised the doctor to drain out as much fluid as he could when he tapped her yesterday because her poor little head is just not getting any better. The doctor pulled out an enormous 37ccs (30ccs is one ounce), almost twice as much as they had the day before, which was already a huge increase for her. She had a very difficult time recovering from this large amount of fluid being drained from her head. Her heart rate when down quite a bit and she had a very difficult time breathing. At this point, the doctors are going to have to decide if they want to put the shunt in earlier than they would like, or continue to put her through this on a daily basis. Please pray for wisdom for the doctors and for the Lord to sustain our little girl through this.

The wonderful news is that God is no less good on the down days than He is on the up days. While it is certainly more of a battle for us to trust in Him when these hard days come, the beautiful thing about God's perfect sovereignty and goodness is that we know He is caring for us all as much today as He does every other day. He knows and ordains each day for His glory. I know that I forget that at times, but our prayer is that we would remember His faithfulness every day, whether up or down. I was especially encouraged by the song Phil Webb sang in church this morning and the words, "my source of strength, my only hope, is Christ alone," served as a very refreshing reminder to my soul!

Suzie is the sweetest little girl. Yesterday when I was holding her, she had some water spurt out of her ventilator. It squirted into her nose, mouth and eyes and all over her face. She coughed and squinted, but as soon as the nurse finished suctioning her, she just blinked her eyes and smiled. She is truly a precious little girl and we couldn't love her any more than we do.

We will keep you posted on how our little girl is doing! Thank you for your love and support.

Smiling Suzie

Just thought we'd give you a brief update on how Little Suzie is doing. We met with the doctor on Monday to go over a few things with him. He reiterated that Suzie continues to do well with her feedings and breathing, which he is very pleased with (as are we:). The past two days she has required a little more oxygen and has been more up and down with her saturation, but the doctor doesn't seem to be deterred so that is good. He mentioned that the two biggest concerns for our girl right now are her brain, which we have known about for some time, and also her eyes. When babies are born prematurely, the blood vessels in their eyes have not had a chance to develop. Because of the increased oxygen that they have to supply to these babies, there is a chance that the blood vessels will start to develop in the wrong direction. This problem often corrects itself, but there is a very small chance that it can pull off the retina which would cause the baby to become blind. If they were to find this starting to happen, there is a surgical option. He just wanted us to be aware of this possibility--for now Suzie's eyes are normal but very underdeveloped. They will keep checking her eyes weekly to see how she is progressing.

Her poor little head continues to swell so they are increasing the amount of fluid to 15ccs per day and can go all the way up to 20ccs if necessary. For her gestation, which is now 32 weeks, she is in the 10th percentile for her weight, the 25th percentile for length, and the 80th percentile for head circumference! Poor baby! They are having to give her a sodium supplement because of all the fluid that they drain out of her every day. They are going to do another ultrasound on Thursday and reevaluate how much fluid to take out every day.

On the fun side of things, our baby girl has started smiling! Okay, so she probably isn't expressing an intense emotion of pleasure, but it so wonderful for us to see her little smile. She also started wearing clothing, which is probably more exciting for the women reading this. She is in preemie clothing but the outfits are still too big for her. Now that I get to hold her and she is able to wear such cute little outfits, I almost forget that I can't just take her home with me. But it's wonderful to see even these small steps forward.

We recently made friends with another couple, Ed and Mina, whose son, Eliot, is in the NICU next to Suzie. Eliot was born 10 days after Suzie at only 1 lb 5 ounces. Eliot had been doing okay for the past couple of weeks, but he developed some sort of infection yesterday morning. The doctors are treating him with antibiotics and a number of other things, but they are still trying to pinpoint what exactly is wrong with him. He is in very critical condition. Please pray for little Eliot and for his parents. Ed and Mina are religious, but seem to lack an understanding of salvation in Christ by faith alone. So please pray for opportunities for us to talk to them about Him.

Thank you for upholding us in prayer! We are blessed beyond measure.

Okay, here are a few pics for you! I love this first one of Daddy holding his baby. The other two are of the "Cuddle Care." And at the bottom is another video of Kyle holding Suzie.

Cuddle Care

I'm sorry it has been so long since we last sent an update. It has been a busy week once again. After Suzie's surgery on Monday, she had a rough couple of days. Everything was very normal as far as her recovery, but since she had been stable for several days before her surgery, it was difficult to see her take a few steps backward. She was very sedated the day following her surgery and had a difficult time breathing. The pain medication seemed to make her heart rate race as well. Within a couple days, she was back on the Sipap machine which is the scuba looking mask they put on her. On Friday she was doing well enough for them to put her back on the nasal canula which is the most mild ventilator. I think she really likes this ventilator because she has been doing really well ever since then! Her heart rate is more normal, although it still does jump up at times and her breathing is much more stable. They continue to drain between 5 and 10 ccs of fluid from her head every day. They will be taking another ultrasound in a week or so to make sure that the swelling isn't getting worse. In about five weeks they will most likely put a shunt in.

Our favorite part of the day is when we get to hold our precious little girl. I started doing "Cuddle Care" as of yesterday. This is where they place her on my chest so she can have some skin to skin contact. This is supposed to be very beneficial for her as all the little bugs and germs on her skin transfer to my skin during this time, and then my body produces all the antibodies against those little bugs. When she drinks my breast milk after we have done the Cuddle Care, she then receives the antibodies to these germs. Not only is it good for her, but it's great for mom too! I certainly enjoy my Cuddle Care time and look forward to doing it every day as long as she continues to do well with it. It is the most precious bonding time for me. Today when I held her, she pushed her head back and opened her eyes really wide as if she was trying to get a good look at me. It just melts both of us every time we get to hold Little Suzie. We are having trouble uploading pictures onto our computer right now but we will post some as soon as we fix the problem.

The other day I read the following verses in 2 Thessalonians 1:3-4, "We ought always to give thanks to God for you, brethren, as is only fitting, because your faith is greatly enlarged, and the love of each one of you toward one another grows ever greater; therefore, we ourselves speak proudly of you among the churches of God for your perseverance and faith in the midst of all your persecutions and afflictions which you endure." I thought of how so many of you have dealt with far more trying circumstances and much greater affliction than what we are currently experiencing. And yet your hearts are to encourage us and to care so deeply for us. We praise God for the examples that we have in our lives who have had their faith greatly enlarged in the midst of trials, whose love toward the brethren grows greater and overflows onto to our family. We pray earnestly for the Lord to continue enlarge our faith during this time and continue to increase our love for the brethren. You all make it very easy for our love for you to increase as you have chosen to bless us in too many ways to even keep track of. We cannot thank you enough for your prayers, love, faith in God, and example of going before us. It is our joy to speak proudly of our church family--the body of Christ--to all those around us.

Post Op Update

We just wanted to give you a brief update on our little girl. The surgery proved to be a lot for little Suzie to handle. We are so thankful that they were able to extubate her and start her back on her feedings. She is doing really well with the feedings, but is having a little trouble with her breathing. They had put her on the small nasal ventilator, but she wasn't doing very well so they had to put her back on the Sipap machine which is the scuba looking mask. She is doing a little better now. Her heart rate was really high all last night so they had to give her some pain medication. Then her heart rate would drop randomly so they really have to keep a close eye on her. Other than that, she appears to be recovering fairly well from the surgery and I even got to hold her again today! Yesterday we watched the doctor drain 6 ccs of fluid from her head. It was amazing to see how much fluid they pulled from her tiny little head in just one day, but we are so thankful that they are able to give her some relief. Here is a picture from right after the surgery when she still had the tube in her mouth and another one today where she has the Sipap mask on.

In one of the greatest sermons ever preached, Paul states that God is the One who "gives to all people life and breath and all things" (Acts 17:25). What a humbling reminder for us to be praying that God would continue to sustain little Suzie's life.

Stay tuned, and stay praying!