Eyes to See

Hurray!!! Benjamin had another follow up from his eye surgery today and his doctor said that everything looked good, the vessels are currently growing in the right direction and he won't need another exam for two weeks! This is such good news. Thank you Jesus! It doesn't mean that he won't have any vision issues, but he is headed in a good direction and will have sight.

Benjamin's digestive system is working good after the surgery. I changed my first stinky diaper yesterday morning. The nurses in the area cheered (not because of my extraordinary diaper changing talent, because it meant Benjamin's system was working :) ) Ahh, the little celebrations that make life wonderful...

Eating from a bottle is still a challenge for Benjamin. Sometimes he does great and other times he forgets to breath and has Bradys (where his heart rate drops). I know that it will be a long road ahead. I have heard nurses and parents say that they can stay in the NICU for weeks after everything else is fine just because they do not have feedings down.

Be sure to check out "Benjamin's Big Boy Stats" at the right to see how big our sweet little boy is.

Thank you for praying for Benjamin. God is good and faithful!

Benjamin and the Bottle

Benjamin has been doing really well the past few days. On Sunday we arrived to find he was moved to a crib again (versus the incubator with the hood up) and Monday was an exciting milestone...(drum roll please)...a bottle! Yes, Benjamin was allowed to taste and see that the bottle is good. Ok, so it was only 5mL of Pedialite (1 tsp), but he was able to take it by mouth and not through a feeding tube! Now he is transitioned over to formula again and has increased his volume to 20mL every 3 hours. He gets pretty tired easily, so sometimes he can eat some, other times he just falls asleep. Tonight he broke his record and was able to guzzle down a whopping 13mL - way to go Benjamin! We have to celebrate the small stuff...it gets us through.

Today I was also notified that Benjamin may need yet another surgery. The doctor believes that Benjamin might have a inguinal hernia. It did not sound like it was a huge deal and not urgent at this time, just something that would need to be taken care of before he went home. Apparently this is a very common surgery done on micropreemie boys. Still, my heart sank a bit I must say, and part of me wanted to say "Why God, why another one? Isn't 4 surgeries enough?" Please join us in prayer that this isn't the case, and that the situation will resolve. I am relieved that it is not serious, but I would prefer that Benjamin not have two more scars to show for his time in the NICU.

Benjamin Unplugged

Today was Big Ben's second day post surgery. When we walked in, the first thing his nurse said was that he had been very naughty. I guess he was fed up with his ventilator and decided to "unplug" himself from it. Yes, my son yanked out his breathing tube. It didn't come all the way out, but enough that they would have to redo it, so they decided to let him try going back to the nasal cannula that he was on before the surgery. He was doing pretty good on it, but did have some apnea (momentarily stopped breathing) episodes this afternoon. I am praying that he won't have any more. His nurse said that was only the second time she has ever seen a baby do that in 26 years of working in the NICU.

Overall he is recovering pretty well. He didn't get a swollen as I thought he would and it is nice to only see tape on his belly and not an ostomy bag. He started to become much more active today too.

Benjamin's Grandma Helen is doing better today too as she recovers from her surgery. Please continue to pray for healing and wisdom for treatment options and decisions that they will need to make in the coming days/weeks.

Thank you Jesus!

Wow. What a day. I am writing this after spending over 12 hours in the NICU today. Though I used to do that nearly every day in the beginning, it was particularly exhausting today. Benjamin's surgery was supposed to be at 11:45, but like most hospitals, they went by their own clock and 11:45 turned into 3:15. Benjamin did good in the morning, but then must have remembered that his tummy was empty and became a bit agitated in the afternoon. He made it through surgery great and they did not have to put a central/picc line in (praise God!) and there were no complications (praise God more!!!). The only negative thing that the surgeon had to say was that the scar was not as straight as he would have liked. If the straightness of a scar is all the surgical staff is concerned about it is a good day!!! Through the surgery and really for most of the day, I felt a great amount of peace. Thank you for all who were praying for that specifically. I felt your prayers tremendously.

Right now Benjamin is resting and healing on the ventilator, but they expected to put him back on the nasal cannula sometime over the night. He was a bit uncomfortable later this evening, but after an additional morphine "bullet" he seemed to calm down.

Things to keep praying for: that he will be comfortable and for quick healing, that the intestine will heal properly so that he will not have to go through this surgery again, that his breathing will be strong so he can successfully come off and stay off the ventilator, and that when they reintroduce foods early next week (or even possibly over the weekend!) that his system will handle it and he will eat like a little piggy and get super big and fat (ok, we will settle for just "grow".)

I don't have a very good update on Helen, Brian's mom. All I know is that her surgery went well without complications. Please continue to pray for healing and wisdom.

Thank you prayer warriers!

Twas the Night Before Surgery...

It's almost here. We have waited over 9 weeks, knowing this surgery would come and now we are counting down hours instead of weeks or days. It is with a mix of excitement and a bit of nervousness that I write this. I can't wait to look at my son's belly and NOT see his intestines (sorry if that sounds disgusting, it is a fact of life for us.) I am still concerned about the actual procedure, especially since they were unable to successfully put a central line or picc line in today. They mentioned that they will likely put one in during the surgery tomorrow. When I heard this my heart dropped since one of the more serious complications occurred when trying to do this when they put in the ostomy. Here is where the rubber meets the road on faith, I suppose. I know that Benjamin is in some of the best hands in the northwest and even the nation, and better yet I know he is in God's hands.

He did well today, but they removed his normal food at 6am and replaced it with Pedialite. It was not nearly as satisfying as his normal food and he spend most of the day a little fussy. This is new to us as we have not really heard him cry much. He would only settle down with a paciifier in his mouth and some good snuggling. He is not able to keep the pacifier in by himself for very long, so I called for backup and his aunt Jenny came to hang out for a couple hours to help cover when I needed to step away from him. For about a 30-40 minutes in the afternoon, he was accidentally unplugged from his oxygen, but amazingly he did not drop in oxygen saturation - basically he was breathing on his own with room air and did great! That was so encouraging!

My mom was able to hold him for the first time yesterday. It was the first time Benjamin had been held by anyone other Brian or me. He sure loves his Grandma!

We have to send out a big thank you to some of our neighbors and members of Bethany Church. Last weekend we were totally blessed by this wonderful group of people lead by our neighbor Jeannine that did a total yard makeover for us. Our grass was really tall and seeding out, weeds were taking over the flowers, and our vegetable garden spot was looking really scary. This amazing group of people transformed our weed patch into a beatuiful, welcoming yard. It looks better than it ever has! THANK YOU! May God give you back the hours you gave to us and then some!

Thank you for continuing to pray for us!

Jamie

Eventful Day & Counting Down

Benjamin is now 4lbs! He is still around 16 1/4" long. He has recovered well from his eye surgery and we are getting ready for the next big surgery day...Thursday. Since he prolapsed more over the weekend and again some today, it is a really good thing that it is only 3 days away. Please continue to join us in prayer that he will be healthy and strong going into the surgery and that everything will go smoothly without complication, and that God will protect the prolapsed part of his intestines until he can get into surgery.

Today was a fairly eventful day for Benjamin - in a good way mostly. First thing this morning he had his first try at a bouncy chair, which he seemed to enjoy. Then since he was on room level oxygen and did so well on his CPAP check in the morning, he was moved to a nasal cannula, which is less breathing assistance. Shortly after that he enjoyed another bath with real baby shampoo this time! In the afternoon he spent some time being held by Daddy.

Here are some pictures from today:

Benjamin on CPAP this morning in his bouncy chair.Benjamin on nasal cannula (Brian's hand)Hanging out with Daddy.

Benjamin loves his pacifier! It is his new best friend.

All,

Quick update: Benjamin's surgery went well today! Thank you God and thank you all for praying! He had to go back on the ventilator since they sedated him, but he was already at low settings and room level oxygen when we left this evening and they expect to put him back on CPAP sometime tonight. The Ophthalmologist said that about 10% of preemies have this condition, but most of time resolves itself. Micropreemies like Benjamin have a higher risk since their blood vessels in the eye have not grown out very far when they are born. He was awake and even opened his eyes some this evening. They are just a bit puffy, much better than I expected. He was pretty tired so we are praying for good rest tonight and tomorrow.

What's next regarding his eyes? He has a follow up exam later this week to see if they will need to do more surgery. We are praying that he will not need any more, especially since his ostomy is being put back together Thursday, and that will be a major surgery for him. Four surgeries in 10 weeks is enough for us, thank you!

Thanks again for praying for Benjamin. We could not have asked for the surgery to go any better.

Jamie

At 8:51 am this morning:


We just got off the phone with an Ophthalmologist for Benjamin. He is requiring emergency eye surgery today. We knew this would likely happen after his exam on Thursday, but we didn't know it would be so fast. The blood vessels in his eyes are growing abnormally and if left alone will cause the retina to detach, likely causing blindness. This surgery has risks and likely some loss of peripheral vision, but the potential benefits greatly outweigh the risks at this point.

Please pray for protection for Benjamin, as he will be undergoing anesthesia, pray for the Ophthalmologist to have wisdom and supernatural skill.

Happy 2 Month Birthday Benjamin!

Yesterday was Benjamin's two month birthday! He has grown 4" and gained over 2lbs since his birth. He is currently still at about the 8th percentile for babies his gestation.

Not much has changed since my last email on Monday. He is doing a little better and was more alert today. I got to hold him again both yesterday and today, something that I have been deprived of since last Thursday. It was fun to watch him make cute faces in his sleep while I held him. He would smile, then smack his lips, then make a tiny "o" with his mouth. I must say that through everything surrounding this experience, I am learning more and more about how to just savor the moment. Early on, after Benjamin's first surgery, we were counseled by our dear friend Zach to not allow worry about tomorrow to rob us of the joys of today. If I could give a speech to the entire world today, I think this would be the topic. I am a worry wort by nature, mainly because sometimes I think if I half expect the worse, when something bad happens it won't catch me by surprise and hurt as bad. Wrong. Though that way of thinking might take some of the sting out of a bad outcome, it will take even more joy out of the good things in life. I vividly remember sitting by Benjamin's bedside late that night after his surgery and looking past all the tubes and wires, the swollen belly, and purplish skin color and just loving my sweet baby, savoring the time I had with him, and enjoying just being Benjamin's mommy, even if for only that night. That, my friends, is true peace.

I will be the first to admit that I am not always in that place and I do have some fear about the surgery scheduled Thursday. It is a 4 hour surgery and was told to expect him to be really swollen again, like last time, and to be sick for several days after. It is a necessary and good thing, but I am not excited about seeing my little boy go through it again. So I am asking you to please pray in advance and lay a foundation of prayer ahead of time for Benjamin's health, strength, and healing, for the surgical team lead, his Neonatolgists, his wonderful primary nurses (Leanna, Linda, Jenny, and Tara) and a large group of nurse practitioners, respiratory technicians, and other specialists that will be caring for him during and after the surgery. And that Brian and I would be filled with the peace that can only come from God, that is beyond all understanding.

Thank you dear friends and family for continuing to hold us up in prayer.

The Latest on Benjamin

Well, the last few days have been eventful for Benjamin. All of the testing they performed to find out why he had the apnea episodes (forgetting to breathe) came back negative. They are still unsure what caused it and only have a few guesses, but he started acting more like himself on Saturday afternoon. He had a great night Saturday and good morning yesterday, so they were able to take him off the ventilator and back to CPAP. Though he handled the transition very well, Brian and I noticed he was very restless and spent quite a while trying to calm him both before and after they took him off the vent. I kept trying to see if he was laying on something or something was scratching him. When I went to change his diaper at his 4:00 "hands on" time, I discovered the cause of his discomfort. His ostomy prolapsed again - the 4th time in less than 2 weeks. The surgeons tried to put it back in four times, but had no luck. They decided that the pressure from the CPAP was just adding to the problem, so them changed him over to a high flow nasal canula, which basically functions like CPAP, but does not push as much air into his stomach. So Benjamin got to try out 3 different types of breathing assistance all in one day.

Here is the part that needs prayer. His doctors and surgeons are trying to decide what to do next. As of an hour ago, he was not passing stool through his ostomy. If this continues he will need to go into emergency surgery to be either put back together or to at least temporarily correct the problem until his scheduled surgery on the 21st. They are weighing the risks versus the benefits. Please pray for wisdom for the doctors & surgeons and protection over Benjamin. The last time he went into emergency surgery he had a few complications that could have cost him his life. He is bigger and healthier now, but any surgery is scary for me at this point.

Thank you for your prayers!

Leave the Roller Coasters at Six Flags, Please!

Ugh. We continue to ride the NICU roller coaster with Benjamin. Yesterday, morning I entered the NICU to find a few nurses and a doctor hovering over Benjamin. He had numerous apnea episodes (where he forgets to breathe) over the past couple hours his doctor determined it was time to go back on the ventilator. I was totally brindsided by this news. He had been doing so well with breathing. The worst part is they did not know what was going on and therefore launched into doing x-rays, ultrasounds, and various blood/body fluid tests. The most probable cause was thought to be some sort of infection, and therefore he was placed on antibiotics again. We are still waiting to find out exactly what is going on, but the good news is that he is doing better. He is much more alert, whereas yesterday he hardly moved unless you really bugged him. This is encouraging to us. If he continues to improve they will begin to wean his ventilator down and work on taking it out early next week. So, he is back on the vent, back in an incubator, but he is ok.

As for his issues with his ostomy, his surgery to put it back in is scheduled for a week from Thursday, providing he is healthy.

He will be two months old on Wednesday. Just when we think he is out of the woods, he gets hit with something else. Please pray for protection from infection and other complications for Benjamin and continued wisdom for his doctors, nurses, and surgeons.

Thank you!

Benjamin Famous??? He is in our hometown!

All,

Here is some fun news - This morning we found out that our little man was featured on the front page of our town's local paper. I had talked to a reporter a few weeks ago and he came up and took some pictures. Some facts weren't 100% correct, and there was a little exaggeration, but they did a pretty good job of keeping most of it correct. So, not only does he have his name & weight up on a sign on 99E, but now the town knows his story. Brian and I agree that he is more known than we've ever been :) Below is the article. I had to remove some content for security reasons.

Just fine, thank you - Benjamin started life a lot earlier than expected, but he’s hanging in there

By Ray H.

Benjamin shortly after his 15-week premature birth. He arrived March 13, weighing just 1 pound, 9.6 ounces and measuring about 12 inches.

Benjamin Thomas, the son and first child of Bryan and Jamie, arrived March 13 as one of our home town's smallest residents.

He showed up early — by 15 weeks. He wasn't due until June 24, but arrived March 13, weighing just 1 pound, 9.6 ounces and measuring about 12 inches at birth.

He hasn't made it home yet. That might take another couple of months as he puts on pounds and builds his health and strength.

But he has been around. He was born at a nearby hospital and now is staying at the neonatal intensive care unit in a larger hospital.

And he has been through some challenges — two surgeries the first few days after he was born and a case of pneumonia when he was two weeks old.

“But he’s on the upswing now,” said his mother, Jamie. “He’s getting stronger, he’s growing.”

This past week was an eventful one for Benjamin.

“He hit the three-pound mark on Monday,” she said last week. “We’re very excited about that.”

He also came off the ventilator and is breathing on his own. “So Monday was a very big day for him. And on Friday, Benjamin marked his 7-week birthday.

Jamie and Brian have been married three years. Until the day Benjamin arrived, she worked as an account manager. Her husband is a full-time manufacturing engineering student.

Her contractions started the evening of March 12 as she attended a function at their church. When they grew stronger after she got home, she told her husband they needed to call their doctor.

But before the doctor could return their call, they knew they had to go to the hospital.

On the way to the local hospital in a nearby town, her contractions grew stronger and back-to-back. She still thought they would examine her and send her home.

When they arrived at the hospital, they learned there was no turning back Benjamin’s arrival. A neonatal care team was dispatched from a larger hospital with a special unit for transporting babies.

But Benajmin arrived before they could get there.

“It was too fast,” Jamie said. “I wasn’t even in the regular delivery room. I was in an outpatient delivery room and he was coming so quickly, they delivered him there.”

Benjamin was born at 1:17 a.m. After the medical staff stabilized him, she and her husband had only a few seconds to meet their son before he was whisked off to the neonatal ICU at the larger hospital.

“They wheeled him in in this incredible transport unit. I was able to put my finger through a portal hole for my hands. He immediately grabbed on to my finger. It was incredible. He was so tiny, so very, very tiny.”

She was released from the local hospital 14 hours later and went to the larger hospital see her son.

They chose his name that night, she said.

“We liked the name Benjamin. It means ‘son of my right hand.’ And interestingly enough, in the Bible, it’s the smallest tribe in Israel, which we thought was interesting because he was so very tiny.”

Thomas came from the middle name of his father and grandfather.

They had expected their baby to come along in June.

“You have these images of how it’s going to be and your baby ends up in neonatal ICU,” she said. “Will he make it? How will life be? Will he have disabilities? It’s a lot of emotions you go through.”

And it has also meant a lot of travel.

Since Benjamin’s birth, she travels to and from the hospital daily to be with him. Both parents stayed several nights at the hospital when he was battling the pneumonia.

“He’s a little miracle baby,” Jamie said. “Every time I look at him I can’t believe he’s here and doing as well as he’s doing. The medical staff here has been absolutely incredible. They’ve become like family.”

They’re looking forward to the day they can bring him home. That looks to be late June or early July at this point, she said.

Before he can go home, he must be able to breathe on his own, eat well and gain weight.

“He has to prove he can keep his heart rate where it needs to be and basically function in every way without the support of any medical staff.”

And do they have a room all ready for him? Not exactly.

“Our house is a disaster,” she said. “Pretty much everything in our lives stopped once this happened.”

They do have his crib. “That we’re grateful for,” she said.

As for an update on how he is doing, he is mostly ok. He wasn't really himself today and he acted really tired. He started prolapsing again by the end of the day and someone from the surgical staff that oversees the ostomy and all of his digestive system came to look at him. They had difficulty getting the prolapsed part back in and said that they likely will try to work him into Dr. Bliss' schedule to have him put back together late next week. This is not the ideal situation, but apparently the risks of waiting might out-weigh the benefits. We might not know the plan for sure until after Dr. Bliss has a chance to look at it himself, which I am hoping is tomorrow. Please continue to pray for wisdom for this team that is watching over him. I am trying not to worry, but it is difficult sometimes when you see your tiny baby going through so much.

Jamie

New Prayer Request for Benjamin

All, I just received a call from Benjamin's nurse. His ostomy prolapsed again (like it had last week). It had been doing so good until last night I noticed some slight prolapsing, and then it really did it this morning. The surgeon on duty was able to put it back in. Benjamin is on Tylenol and it sounds like he is doing ok. Please pray specifically for protection for Benjamin's little body, wisdom for the surgeons, doctors, and nurses, as well as continued growth for Benjamin. He is eligible for surgery to put the intestine back together when he is greater than 2000 grams, so he has about 500 grams to go and hopefully we can put this prolapsing ordeal behind us!

Big Ben

Quick update: Benjamin is getting bigger! He is 1500 grams now, about 3lbs 5oz and 16" long. Today he was upgraded from his incubator to an open crib. He has gained a total of 90 grams the past two days!!! (He has been averaging around 80-100 per week). He continues to do well on CPAP.

Please pray for Benjamin's eyes. 80% of preemies have issues with their eyes ranging from just needing some mild correction to blindness. Benjamin had his second eye exam today. It is still early to know exactly what will happen, but they can tell that he does have at least mild retinopathy of prematurity (where they retina is under developed and the blood vessels are only partially grown into the retina). They are particularly concerned about the vessels that are on the side of the eye closest to the ear, as they do not appear to be growing like they should. We know we serve a big God that is the Great Physician and can bring Benjamin's eyes into complete maturity. Please join with us in prayer for Benjamin's eyes - that he will be able to enjoy the visual marvels of God's creation through sight and that the retinopathy will be healed and the vessles will grow properly. His next eye exam is next Wednesday.

As always, thank you for lifting Benjamin up in prayer!

May 2, 2009

Today was yet another great day for Benjamin. He is still doing wonderful on CPAP and was down to 22% oxygen for most of the day (21% is room air). His ostomy has not prolapsed again yet, which surprised the surgeon who put it back in. We are praying that it will stay in. One of the only concerns they are looking at now is that he is not growing at the rate they would like to see. He is ranked at about 8-10 % for his weight and length for his gestational age. They are increasing the calories in his milk to see if it helps. They believe this is largely connected to the ostomy, since he cannot absorb all the nutrients since the food does not pass all of the way through his system. We keep telling Benjamin that he needs to catch up with his good buddy Aiden who was born in November and is pushing the 100% ranking for height and weight. Maybe Aiden can share some of his secrets to successful growth & weight gain.

Today I got to give Benjamin another bath. He loved it. We took his CPAP off and he did great, just needing to get an oxygen mask a couple times (which is really good considering he was on a ventilator less than a week ago!) He is really starting to show more facial expressions and looking closer to a full term baby, just small. He likes his pacifier and his thumb (when he can find it). We feel so incredibly blessed by the progress Benjamin has made this week...off the ventilator, over 3 lbs, maintaining his body temperature...thank you Jesus! And thank you all for your prayers!!!

One more thing to rejoice about...Benjamin's cousin Katie, whom I have written about before that was born 5 weeks early, got to go home today and is doing well! She is a beautiful little girl.

Attached are a few pictures:
1) Aiden...Benjamin's personal trainer, inspriation, and future partner in crime. This is fully how we expect Benjamin to look in 3 months (or, maybe 3 years)
2) Katie...Benajmin's second cousin and also a member of the elite preemie club
3) One of my favorite pictures of Benjamin yet! Fresh after his bath today and sporting his new cow/farm shirt. It makes me just want to pick him up and hug him!