March 30, 2009

Today has been a rough day. Benjamin was agitated most of the day. He is back on morphine and another drug that helps keep him calm, but he just seemed upset most of the day. He had a lot of testing today including a head ultrasound, x-ray, various blood tests, and test on the fluid in his lungs. I lost track of what all of them were for. We are anxiously awaiting the ultrasound results that we expect to receive tomorrow to see if the bleeding in his brain has worsened. He is back on antibiotics as they found some bacteria in the fluid from his lungs and even though he hasn't been diagnosed as having an infection, they don't want to take any chances. He is still having a rough time with his ventilator and has been requiring higher oxygen levels. They are not exactly sure what is going on, but they have not found settings for the ventilator that agree with him.

The good news is he is still tolerating his feedings well and is receiving 1.5mL per hour (a little less than a teaspoon every three hours) and he is up to about 2lbs and 2 oz, close to 7 ounces more than his birth weight.

I have been diagnosed with an infection myself, so I have been super tired and we have been coming home a little earlier than I would like to, but I know I am useless to Benjamin if I don't take care of myself and if I get sick I won't be able to see him at all.

Please join with us in prayer that Benjamin will stay strong and a fighter, that he will stabilize with his oxygen levels and the ventilator and soon become strong enough to come off it, that the bleeding in his brain will not have worsened, and that he will not be in pain or discomfort. It is really hard to watch him be uncomfortable.

March 26, 2009

Here is the latest on my precious little Benjamin. Our biggest news of the day is that Benjamin is done pretending he is on the beach in Maui - in other words he out from under the billiruben light!!! He might need to go back under it, depending on how his tests end up in the morning, but is sure was good to see him without his little shades on. He opens his eyes more and I love looking at his sweet little face and expressions. He also gets to be swaddled up, which brings him more security (and me too, since he is less restless). His feedings are going well to. They had to stop him for a few hours on Tuesday evening, but were able to start him back up and increase it to a whopping half a mL per hour. They have to start him slow, but he is making progress! He is still having difficulty with the ventilator. He seems to do ok and then backslide repeatedly. They are monitoring him every day and checking to see if they can move him closer to being off. They have continued to give him morphine "bullets" as needed. Today he had one at 4am and did not have another one when I left after 10pm, so he is making progress in that area too. All in all, I am very pleased with how he is doing and praising God for giving him strength. He really is a fighter.

Today was our 14th day in the NICU. Brian stayed home to get some much needed rest and take care of some things for school (he is a full time student for those who didn't know and had finals last week - great timing, huh.) I enjoyed a peaceful day. I really feel like God is teaching me a lot of lessons and have a feeling he will continue to deepen them and there will be more to come. As I wrote in one of my previous emails, there are certain songs that play in my head throughout the day and I feel like I am "living" them. Here is another one that I thought I would share. It is my prayer these days. Thank you for your continued prayers and encouragement to us as we travel this road.

EVERYTHING by Tim Hughes

GOD IN MY LIVING
THERE IN MY BREATHING
GOD IN MY WAKING
GOD IN MY SLEEPING
GOD IN MY RESTING
THERE IN MY WORKING
GOD IN MY THINKING
GOD IN MY SPEAKING

CHORUS:
BE MY EVERYTHING
BE MY EVERYTHING
BE MY EVERYTHING
BE MY EVERYTHING

VERSE 2:
GOD IN MY HOPING
THERE IN MY DREAMING
GOD IN MY WATCHING
GOD IN MY WAITING

GOD IN MY LAUGHING
THERE IN MY WEEPING
GOD IN MY HURTING
GOD IN MY HEALING

BRIDGE:
CHRIST IN ME
CHRIST IN ME
CHRIST IN ME THE HOPE OF GLORY
YOU ARE EVERYTHING

CHRIST IN ME
CHRIST IN ME
CHRIST IN ME THE HOPE OF GLORY
BE MY EVERYTHING

March 24, 2009

I know it was not long since my last update, but I could not help myself. My little boy is doing awesome today!!! There are still some of the same concerns and he ended up having a transfusion this morning to help out with this body's acidity, BUT he was able to start on very small amounts of milk today. They told us to expect that he will have to start and stop several times as food is hard on an immature system like his, especially after his surgery on his intestines, but I am just super excited that he was able to start the process. Our next fun surprise was that I got to hold him!!! Though this might seem minor, this is major for a mommy that has been longing to hold her little boy close since before he was born. I loved it and will cherish that memory always. He loved it too. When I held him they were able to reduce his oxygen level down several notches over a period of about 45 minutes to the point he is on regular room level oxygen (21%) and he stayed there for about 3 hours! It is incredible how touch increases preemies vitals. Brian just came in and reported that he fully digested the milk they gave him too...praise God!! Today is definitely a two steps forward day...thank you Jesus.

Thank you for celebrating these little victories with us.

Jamie

March 23, 2009

Thank you for your continued prayers. Today was another challenging day. Benjamin is still having a hard time with his ventilator and a few other things. He had a ultrasound of his brain, and they found that the mild hemorrhaging that was found last week has increased. At this point they are going to just watch it and see what it will do, and he will have another ultra sound next Monday to see if there is any change. As you can imagine, we are very concerned about this and are praying that the bleeding will stop and God will protect him. He is still having some discomfort, so they are giving him occasional doses of morphine as needed. There have been a couple good things. His bilirubin has improved with the extra lights and though he will likely be under them for a while, it is nice to know they are working. We had a scare that he was having some clotting issues around his liver (likely from where they accidentally nicked the liver during surgery), but praise God the tests came back ok. He still isn't quite ready to have food or be held. Possibly by next weekend, but it just depends on how he is doing.

Today was our 11th day hanging out in the NICU. It is like home to me now and I am starting to get down a routine. I am learning names of the staff and many of them know or at least recognize us. We continue to be pleased with the doctors and nurses there.

I am still on an emotional rollercoaster. When Benjamin has a good day, I have a good day an when he has a bad day, so do I usually. Sometimes I can take difficult news and sometimes I need to escape to a place where I can just let it all out and have a good cry. I am so thankful for Brian during these times. He has been my constant, steady support.

I find myself living the words of certain songs these days. There is one song that I really connect with called "Price of Love" by Heather Clark. I loved this song before, but now it hits home more. I feel more like I am in the "learning" to be free stage. Here are the lyrics:

I have seen a million miles of desert land, and I have learned to be free.
And I have walked the shadow lands of Egypt, and I have learned to be free.
And I have held the mane of untamed horses, and I have learned to be free.
And I have walked on frozen lakes in my soul, and I have learned to be free.

CHORUS:
And I have known the price of love,
And given all I have for a moment's time with you.
And I have died a thousand times,
And I have learned to be free.

VERSE(2):
And I have lost what only death could take from me, and I have learned to be free.
And I have gained what only life could give to me, and I have learned to be free.

CHORUS

VERSE(3):
And I have craved and walked away in the silence, and I have learned to be free.
And I have looked into the face of injustice, and I have learned to be free.

Thank you so much again for praying for our little Benjamin. I cannot express how much it means to us to hear that people are lifting him up to our Almighty God. It is a huge encouragement and gives us hope.

Jamie

March 21, 2009

When we have been talking to Benjamin's doctors and other people who have been around preemies, especially micro-preemies (I just learned that word today - it is the smallest class of preemies and is what Benjamin fits into) they describe the journey as two steps forward and one step back. Today was a little step back. I found out that Benjamin actually had a bit of a rough night. His nighttime nurse said he was uncomfortable for several hours and they ended up putting him back on the morphine drip. This isn't too bad considering he had two surgeries in the past week. His bilirubin (jaundice) levels have also increased. The poor little guy probably thought he was in Hawaii as they now have 4 lights on him including a fancy one that is built into a pad he lays on. When we left tonight he seemed slightly distressed because they had him laying flat and totally exposed and couldn't even swaddle up his feet, which is an insecure feeling to a newborn. He is not progressing with the ventilator as they had hoped. In fact, instead of going down in oxygen levels, he actual went up today. All of this means that we won't get to hold him tomorrow as we hoped, but we are ok with that if it will help him get better.

We continue to praise God for the overall progress that was made this week and are praying that Benjamin's lungs would be strengthened and his system able to start on food soon so he can start growing. Tonight we are pretty worn out and I am having separation anxiety. Though the staff in the NICU are wonderful and more than capable, it is still so hard to leave him, especially on the stepping back days.

Thank you for continuing to stand with us in prayer.

March 20, 2009

It's hard to believe that it has been only a week since Benjamin made his unexpected arrival. It feels like it has been a month. Today has been a wonderful day for Benjamin again. He is doing so well for just recently having two surgeries and all that goes along with them. The doctors are really pleased. Today he went off of morphine and on caffeine. If Starbucks knew about this therapy, they would probably have a new marketing campaign. As Mom and I say, he is a boy after our own hearts! The caffeine is apparently used as a stimulant and will be helpful when they start to ween him off the ventilator. Preemies his size tend to forget to breathe at times and I guess it helps them out.

We are learning a little about parenting a preemie. We are learning how to talk to him and touch him to comfort him, and I help with taking his temperature and today started changing his diapers (which are smaller than a doll diaper I might add). There is a possibility that we will get to start holding him (other than helping with bed changes) as soon as Sunday!! YEAH!

I have attached some pictures. The first two were from Saturday before his surgeries and the last two were from today. Brian was able to help with a bedding change and got to hold him in his hands. The last picture is our first family picture. You can bet that this one will make it in the baby book. Can you tell we are proud parents?

As always, thank you again for your prayers. We are seeing the fruit of them daily!

Jamie & Brian

March 19, 2009

Today was another great day. Benjamin is still doing great and several of his doctors stopped by and had similar reports - that he is doing better than expected. He got his chest tube out today, so one less tube! He will have a test early tomorrow morning to see if he needs another set of blood platelets (sp?) to help his blood clot better, but he had no blood products today, so that was really good news. His swelling continues to go down and he is starting to look more like the baby I met last Friday.

Here was the coolest part of the day, and possibly the most precious moment of my life so far - he needed to have his ventilator cleaned a bit so they left the tubes in his mouth, but took off the part that holds them on and removed his little sunglasses and head band. It was the first time I saw his face completely since he was born. When I told the nurse that, she let me come over and kiss his little forehead. He then opened his eyes and looked up right at me. It felt like the first time we really connected since he was born. While I have been able to touch him some, it was never quite like this. I was able come home tonight with peace in my heart and an eagerness to be able to have more experiences like that to come.

We cherish your continued prayers. Here are some specifics if would like them: That his system would grow strong enough to start him on milk soon, that his lungs would strengthen soon to be able to get off the ventilator, that his blood would clot on his own so he would not need more blood products, and for his general health to continue to strengthen.

Thank you so much for standing with us in prayer!

Jamie

March 18, 2009

Greetings All,

Tonight we are celebrating in our own little way. Benjamin has had a great day! As I mentioned this morning he was doing better last night and has not gone downhill as the doctors expected. They said it was like it did not even phase him!!!! Hallelujah!!! His nurse said she had never seen a baby his size respond to this surgery this well before. We are absolutely dazzled and blessed by this miracle. He was also able to have his catheter removed today and they turned the suction off of his chest tube, which is the first step toward removing that (hopefully tomorrow). He is still on the ventilator, but is on a lower oxygen level, and they were able to cut his morphine dose in have early this morning.

Thank you to all of you who have prayed and sent words of encouragement. We can see the work of God all over this. Thank you for praying for me too. This new mama is finally able to breathe a little easier (I am surprised I didn't need a ventilator too!) Please continue to pray that Benjamin will stay strong and healthy and there will be no further complications. Though we rejoice now and will continue to do so, he is still so very tiny and vulnerable.

Now it looks like we may be ready to start in on our new routine (if there is such a thing) on parenting in the NICU.

Jamie

March 18, 2009

Dear Family and Friends,

Quick update - Benjamin is doing GREAT considering all he has gone through. He did fantastic in the afternoon and evening and I recently checked on him and the nurse said he did so good through the night that there is even a possibility he might have his ventilator tube removed today!!!! I wanted to jump up and down and scream, but they don't recommend that activity around premies :) Removing his ventilator will be the first "forward" step since Saturday. I know we are far from being through the woods on all of this, but it sure feels good right now.

Thank you for your continued prayers! God is so good!!!!

Jamie

March 17, 2009

Wow, the last few days have been a wild ride. I never knew I could go from being hopeless to walking on the clouds back and forth so many times. The good news is Benjamin is currently doing good, but in case word didn't make it to you, here is what happened the past couple days. On Saturday afternoon he was moved back to the ventilator and later they found that there was air in his tummy and that there was likely a hole in his intestines. Emergency surgery was performed late that evening. As we waited during the surgery, the most amazing thing happened. People just started showing up, totally unsolicited, just to be with us and pray with us. With each person that entered the waiting room, I cried a fresh batch of tears and soon we had a whole roomful. We have never felt so loved. The surgery went pretty good, but had some complications and Benjamin ended up getting pretty sick. Sunday was filled with lots of scares and some pretty difficult discussions with doctors. We also found that his PDA (vessel near his heart) was not closed as it should be and therefore he would likely need another surgery. They let him rest Monday, and he had a pretty good day, and today he had his PDA operation. Praise God, he came through the surgery with no complications, and is currently doing well. They expect him to get sick later tonight and tomorrow, but we are praying that he stands strong. We are also praying that he has no more complications, as his little body can't take much more. He has more tubes coming out of him than you can imagine. But he is a fighter...and is battling a tough battle. We have been blessed with the peace that has passed all understanding and surrounded by so many amazing people who have poured out love, generosity, prayers, and kindness. This is by far the most difficult thing that we have ever gone through, but we are seeing some amazing things come out of it.

Thank you so much for your continued prayers. They mean more to us than you will ever know. We will continue to send updates as we can. If you have called/emailed, we thank you for reaching out to us. We're not ignoring you...I just haven't gotten to your messages yet, but will soon!

Jamie

Welcome Benjamin

March 14, 2009

It is my pleasure to introduce my son, Benjamin Thomas who arrived Friday, March 13 at 1:17am. Did you think we were due in late June? So did we! Benjamin is 15 weeks early, 1 lb 9.6 oz, and 12 3/8" long and very attached to our hearts already.

On Thursday just before 5:00pm I started feeling mild cramping, which later became stronger and by 7:00 was a little stronger cramping and starting to become regularly timed. Being that I started the pregnancy with concerns and seemed to call my doctor often, I dismissed this and just decided I should get home and get my feet up. By 10:00 things were starting to get pretty uncomfortable and by 11:00 I told Brian that we needed to get to the ER right away. Just over two hours later, I delivered my sweet baby boy, whom was whisked away to a special room where a team of wonderful, highly trained doctors and specialists worked to stabilize him before transferring to a larger hospital. I praise God for the amazing group of doctors and nurses that surrounded both us and Benjamin that showed so much love and compassion for us.

25weeks along is not very far for a baby. Their lungs are underdeveloped, they have very little fat, their skin is thin, and there is much that can go wrong. After spending some time talking to a doctor from Emmanuel, I learned that the difference between 24 and 25 weeks along is often a difference between survival and not. I was encouraged to hear that 70% of baby's born at 25 weeks survive and my little boy was looking good so far! Of course he needs help breathing and getting nutrients and hydration and will for a while, but he is ALIVE and appears to be a fighter!

I was discharged around 1:30 or 2:00pm later that day (it would have been about 5:30am if it were up to me!) I feel amazing and physically am doing fantastic. We quickly ran home to clean up, change cloths, grab a camera, and headed off to see Benjamin. Though we briefly were able to see him right before he was transported, I melted when I saw him for the first time in th NICU. He was so very tiny and had cords & wires all over, with some very fashionable sunglasses to protect his eyes from the light used to help out with some jaundice. But he was our sweet little boy. I got to touch his tiny little hands and feet and stocking covered head. He is too little to hold, but just getting to see and touch him is enough for now. He even has the most precious tiny cry that I have ever heard (he does not like diaper changes or to have his tubes & wires messed with). We were pleased to also find that he was upgraded from a ventilator tubing down into his lungs to the next step, which is tubes that go into his nose and ensure that his lungs always have some air in them. Though this helps to keep his lungs open, he is actually breathing on his own! Praise God!!!

We are asking that you join us in praying for our little Benjamin. Please pray that he continue to stay strong and have a little warrior-like spirit, that he will gain weight and develop at a supernatural pace, that he is comforted and feels the love of his parents and all those surrounding him, that he is free from pain, that all those who provide care to him will be alert and have wisdom to see into any potential problem and will be blessed for their service and love to tiny babies like Benjamin, that his mama and daddy will be at peace when they cannot be by his side and for wisdom on what to do now.

I have attached 4 pictures (thanks for taking them Steph!) that were taken last night.

The first is the most full view we have seen of him, but he is not happy since he is getting cleaned up and having some of his tubes reset. The second is closer to a typical view without his sunglasses, the third is taking in some rays and holding on to mama's thumb, and the fourth of course is his proud parents looking on.