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.
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!
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.
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.
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.
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.
Thank you so much for all your prayers for Suzie's surgery. We just wanted to let you know that everything went really well. The Neurosurgeon said he drained 10 ccs from her little head and will continue to do so every day until the fluid is under control. She has a little bulge on the top of her head where the fluid is accumulating. They will continue to monitor her over the next several weeks to evaluate where to go from here. Most likely, she will have a shunt put in place in the next four to six weeks. She is still pretty sedated right now and her little heart is racing, but they told us that she did very well so we are very pleased. She will be given pain medication, IV feedings, and remain intubated for the next day or two. We praise God for getting our little girl through this next hurdle and trust that He will continue to guide us down this new path. Thank you all for your encouragement and prayers!
So Monday is the big day of Suzie's surgery! If all goes as planned, she will be headed off for her operation at 4:30pm tomorrow. The procedure will take about an hour and we will be sure to give you all at status update afterwards. Please pray for wisdom for the doctors and that everything would go smoothly. Pray also for a quick recovery for our little Suzie and that she would be back off the intubation within a couple of days.
Thank you all for being with us in this. We love you!
Well, we are left to wait a few more days for Suzie's surgery. A child from Children's Hospital needs emergency brain surgery for a tumor and was transported here to have the surgery done by the same surgeon that was supposed to do Suzie's surgery. The brain tumor surgery is supposed to last 8-12 hours and is urgent so Suzie was rescheduled for Monday at 4:30pm. Please continue to pray for our little girl this weekend as we are quite ready for her to be through this next hurdle.
Thank you for your prayers and your encouragement. We'll keep you posted.
We just found out this morning that Suzie's surgery is set for 2:30pm tomorrow. They will take her upstairs for the procedure and insert a reservoir into the left side of her head. The reservoir will allow the fluid in her ventricles to drain into the surface of her head where they will drain a small portion of the liquid every day. Please pray that the surgery will go smoothly and be successful. We found out that there is a 10% chance that this surgery will be enough to resolve the blockage so she wouldn't need a shunt, which is our prayer. Please join us in lifting these requests up to our sovereign and wonderful God.
Thanks again for your faithful support! We tell Suzie everyday that she has so many people praying for her.
Here is a video that Kyle took of Suzie for me the day I was unable to go in and see her. It's a bit lengthy, but it's so cute! You can see a lot of her precious little face because they remove all the head gear.
What a joy it is to have many good reports to bring before you today! First of all, our little Suzie girl is no longer intubated. We attached a few pictures of her new ventilator. Be sure to check out her bracelet in the third picture...it's Kyle's wedding ring! While it certainly covers up a lot more of her face, it is so wonderful that she no longer has to have that tube down her throat. The nurse said that her vocal chords are still swollen because the tube was going right in between them for so long. So we have yet to hear any sounds from our little one. But what a joy it will be when we finally get to hear little squeaks and even cries come from her precious voice! Her oxygen has remained in the 20s even on the new ventilator which is so encouraging. She seems so much calmer now than she did a couple of days ago when they first took her off her pain drip. She still moves around quite a bit, but she seems a lot more comfortable. All that being said, it wouldn't be abnormal for her to return to the tube in her mouth, but we are praying for that not to be the case.Her feedings have increased as well. She is now receiving 8ccs, about a third of an ounce, every three hours. Hopefully she will continue to digest what they are giving her so they can continue to increase. Papa Bear was able to hold his little daughter for the first time last night! He only had her in his hand for a few minutes (we are kicking ourselves for not having our camera with us), but it was such a special time for him. She really isn't much bigger than his hand and it was the cutest thing ever to see him so tenderly hold our sweet Suzie.
The neurosurgeon finally came by to look at her sonogram today and decided that she needs to have the reservoirs placed in her brain within the next two to three days. We will certainly keep you posted when we have more info as we will be very grateful for you all to pray for her procedure.
Today we listened to a sermon from Kyle's pastor in Hutchinson on measuring our love for God. Kyle and I were both so convicted that we can so easily place things in this world above our Lord and desire temporal happiness more than we desire to please Him. We were reminded of how much more He loves us than we can even understand and humbled that this is such a wonderful opportunity for us to demonstrate that we love our God more than anything else in this world. Please pray that this would be true for us no matter what is to happen with our little girl. I don't even know how we can possibly express how much your prayers and encouragement means to us. Suzie is now 18 days old and yet we continue to receive so many encouraging cards, emails, blog posts, phone calls and visits letting us know how many people are upholding us in prayer. We are truly blessed far more than we deserve.
Today was an especially difficult day for me. I have cried many times over the past two weeks, but today I really cried. I cried for a long time. I think the reality of what my little girl might be facing over not just the next few weeks, but for the rest of her life, is starting to set in. As a mother, I want so badly to take away all her pain. I would endure it all for her if I could. Yet I keep coming back to the reality that the Lord never gives us more than we can handle. That goes for me and Kyle and also for Suzie! The Lord has chosen to give and sustain her life for a reason. Our prayer is that we will lean on Him and trust Him more and that unbelievers around us might see God's glory in all of this and give their lives over to Him. The truth is, as much as I pray and desire for our little girl to not have severe effects from the bleeding in her brain, even more do I desire for her to spend eternity in heaven with our great God. If she has to endure a difficult life here on earth before she ends up with Him, that is far better than to have all that the world has to offer for a short time and then be a part from the Lord for all eternity.
What prompted this difficult day for me was that yesterday they took her off of her pain medication drip. They had cut the amount in half a few days ago and completely took her off it yesterday. The nurse said the longer they leave her on it, the more of a chance she has to become addicted to it or it could end up causing further complications in the brain. When Kyle and I went in there (yea for Kyle being able to go in again!) she was one unhappy little camper! Her legs and arms were flailing around and you could tell that she was crying even though she can't make any noise due to the tube in her mouth. It was so hard to see that she was obviously not comfortable and possibly even in pain. It broke my heart to have to see her go through that.
Another difficult piece of news we received is that they did find that her little brain had swelled even more. We haven't talked with the neurosurgeon yet, but the doctor was confident that they will operate some time next week. They will put in a reservoir into her ventricles where the fluid will build up on the surface of her head and they will drain it every day. When she gets old enough, they will put put in a shunt that will automatically drain the fluid into her abdomen to be reabsorbed by the body. She would have to get it replaced when she is a few years old. The doctor said that this operation really isn't too concerning. There is a slight risk of infection and also a risk of blood clotting, so they will be watching for both of those things. But he reiterated that the damage that has already been done in her brain tissue is by far the most concerning issue. We rehashed all over again their opinion that Suzie will most likely have moderate to severe brain damage.
We did find out some good news though. Suzie's PDA closed! Her oxygen has been set in the 20s which is wonderful, but the nurses have told us to expect it to go up and down for a little while. They are hoping to get her onto a new ventilator soon, a mask that goes over her nose rather than a tube down her throat, so that will be a good day for us! Suzie has been tolerating her feedings quite well so they have been able to increase it a little and will continue to do so as long as she continues to do well.
Again, I have to tell you how wonderful my husband is. He has such strength and compassion. He is so tender and loving. He is a great example to me as he clings to Christ during this time. I praise God for him and for so many people who have come alongside us during this time and are bearing our burdens. We have so much to thank God for even now. He has shown us so much tender mercy and gives us FAR more than we deserve!
We posted another little video of our little mover. Hope you enjoy and thanks again! Please continue to keep us in your prayers.
Kyle and I were married on November 11, 2006. Our precious daughter Suzie Lorraine was born on July 18, 2008, three months before her due date. We have seen God's love so much, especially these past several months. We praise Him for all His many gifts, but most of all for sending His Son to die for our sins.