October 28th: Day 43

Last night I had the best of intentions of posting pictures, but a migraine won out...imagine that. Early this morning when I called to check on Ben, I learned he had an ok night, but was still very easily agitated and dropping his sats with minimal stimulation and routine care. This morning, the chest x-ray looked not so great again, so they again had to 'tap' his chest. They pulled off roughly the same amount they did before when the pleural effusion was causing him trouble. They had also turned up the pressure on his vent, but today I talked with Dr. Anna (an-ya) and she said that it was not because he was worse, but simply to compensate for the air leak around his tube. Since they tapped his chest this morning he has been doing pretty perfect today...his sats have been 100/100 for most of the day and he had one of his best blood gases this afternoon. So, they decided to wean a bit of his oxygen, just by 2%, but if he continues to do good for several hours, they will continue to back down another small increment. So far, it looks like tomorrow will be the last surgery to close him up fully. I am looking forward to getting this taken care of. If he continues to have issues with the pleural effusion, they are considering inserting a chest tube, but I don't think we are there yet.
On another note, his best buddy Ellis is doing great also. They are starting to hear the 'h' word ...(home). I am so happy that going home is even beginning to be discussed...he is such an amazing little guy too! Keep up the good work Ellis, you need to show Ben how to do this so he can get home too!
Right now, Ben is resting peacefully with his little buddy the giraffe and a bear. He looks so cute and calm today. Days like this help to get thru the rough days. We've talked about Halloween costumes for him...Ben and Ellis are thinking about being boxers...they're tougher than any professional boxer I've ever seen! The little engine that could was also brought up....personally, I'd say he's more of a freight train :) Take care everyone, I'll try to update asap.

October 27th: update

After they removed the excess fluid from the left side of Ben's chest, he improved quite a bit. He was stable enough to proceed with the next surgery to close his abdomen more. They did this procedure and removed one of the 2 drains in his abdomen that were placed to remove excess fluid from the abdominal cavity after the surgery last Thursday. After the procedure today, he was doing well at recovering, but then had several episodes where he has desaturated (his oxygen sats went down). His nurse, Tracy, and the doctors have been watching over him very closely and we are very lucky they know him so well so they can adjust quickly to the signals he is giving us to let us know when something isn't quite right. They have repeated 2 more chest x-rays today and have made some vent changes...decreasing his rate and increasing the pressure a bit... and he's required more suctioning, which initially he doesn't like, but he is starting to settle in again to his norm. Again he has proven to us just how strong he is...he's so amazing. (Also, Ben opened his eyes just after surgery today, I will try to add that picture tonight).

October 27th: Day 42

Happy Birthday Daddy and also to Benjamin who is now 6 weeks old. Each week we make it thru is another milestone for little Ben. Ben continued to be very touchy throughout the night last night. This morning, his chest x-ray looked worse, they determined that his pleural effusion they've been watching was the cause of some of his agitation. A pleural effusion is an excess of fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs. In his case, they were aware of this, but were hoping the tissues would reabsorb some of the fluid. This didn't happen, so they wound up having to insert a needle into his chest to drain the excess fluid out today...they got about 3 ounces of fluid off the left side. After speaking to his nurse, she said he instantly opened his eyes after this was removed and his sats went up. We are now awaiting the repeat chest x-ray...(he gets daily chest x-rays typically). For today, the original plan was to try to close some more of his incision, but I'm awaiting a call from the hospital to see if they feel he is now stable enough to undergo this surgery. Also, they had another head ultrasound scheduled to assess the size of the ventricles in the brain...his were enlarged on previous studies likely due to the brain bleeds he experienced. Also, there is a chest echo scheduled to assess his heart function. We were on a bit more of the emotional dip in the roller coaster ride of his journey yesterday and even though a lot is planned for today, we are hoping for great things for Ben today. Please continue to pray....

There is also an article in the Belleville News Democrat today regarding a bit about his story and the benefit my family is putting together for Ben's medical bills. It is definitely scheduled for November 14th at 6pm at the Smithton Catholic War Vets. A sincere thanks to everyone involved in setting up this event and to those who have donated their time and items for the silent auction and trivia night. As many of you know, it is uncertain how long Ben will be in the hospital hopefully on his way to recovery and if we will even be able to bring him home...we pray every day for miracles and God's grace for Ben and really appreciate everyones support. His is still a very long journey which we will gladly walk with him, this type of event will help to take some of the burden off of us.
With much love and thanks, Kelly and Dave

October 26th update

Ben continued to have a rough day today. He was very touchy and we are hoping for an easy night for him....but look how cute he is in his pumpkin hat....

October 26th: Day 41

Benjamin had a rough night last night. They feel like he had a 'plug' in his breathing tube, likely caused from thicker secretions stopping up the bottom of the tube. This caused his heart rate and blood pressure to increase quite a bit and his sats to drop. They had to increase his rate on his vent again. We got a call at 5:30am to come over due to these issues. His carbon dioxide level was VERY high as well as a number of other monitoring parameters, including his white blood cell count. They are sending off cultures, but believe this is more of an acute event due to the plug and not an infection. They have adjusted a few of his meds, replaced his NG tube because it also had very thick secretions clogging it and adjusted a bit more of his vent settings. Right now, he is trying to settle back in to his groove and our hope for today is a lot of rest and no more events. Please pray for a non-eventful day for Ben, unless it gets better. Thanks.

October 25th: Day 40

Last night they had to adjust one of Ben's vent settings, they had to increase his rate slightly, (rate=breaths/minute), to help him with his oxygen sats as they were sagging a bit. When we visited with him, he just seemed more tired to both Dave and I. After adjusting the rate, it did help him. Dr. Saito came in this morning and did the 2nd surgery to close his incision. She said that he did really well with the surgery. They also changed out his catheter and removed his stitches from his ecmo cannula's that were in his neck. His dopamine has been completely removed, as his blood pressure is staying up where they want it to. He is resting peacefully right now with his daddy holding his hand and hopefully will continue to stay chilled out for the rest of the day. We would like to thank Shannon, Ben's ecmo nurse and girlfriend, for her post the other day. It has touched more people than she will ever know....every one of which said it made them cry, including us. Ben has been very blessed to have such caring nurses and doctors watch over him through all of this. We really couldn't ask for more in that respect. The plan for the rest of today is to let him rest and settle in before the next surgery to close the incision more...they are expecting 2-3 more surgeries this week to accomplish this. As always, we will try to keep everyone posted the best we can. We also wanted to let everyone know that some of my family members are planning a benefit for Baby Benjamin on November 14th at 6pm. We don't have all the details yet, but I will try to put these on the blog asap as I confirm all the details. If you can come, we would really love to see everyone...God Bless everyone for caring so much...

Our first family photo

This was from when Ben was still on ecmo...it's our first family photo with all 5 of us...

October 24th

Today is another blessed day...Benjamin had a wonderful night last night and they are going to try to wean some of his ventilator support today in anticipation of needing to go back up a bit tomorrow....that is when Dr. Saito is planning on checking to see if she can 'cinch' part of his surgical incision in to sew it up a bit more. With this, they are expecting that to be a stress on him again and that they will need to go back up on the vent support a bit. Ben again had awake times this morning where he has been completely comfortable and his oxygenation sats are higher than yesterday. The girls have a birthday party today, so Dave and I are planning on going over after that to visit for the day. Also they weaned some of his dopamine (this medication keeps his systemic blood pressure up so it can reduce the blood pressure to the lungs). As rough as this journey has been for our family, we are so excited that Benjamin is doing so well...this truly couldn't have happened without God continuing to hold him up thru all of this. We feel so blessed by having him in our lives, it's unbelievable. This journey has taught us so much about TRUE faith in God and His plans, He truly does walk with us thru everything. We love you all and thanks for the continuing support. Please also pray for Ben's best buddy Ellis...he had MAS (meconium aspiration syndrome) at birth and is another miracle baby...he has repeatedly beaten the odds as well....he is Ben's next door neighbor and he was also on ecmo for 20 days. He also had brain bleeds from the machine that saved our boys, and they both will be facing a long recovery.....We are still not out of the woods by a long shot with Ben, but I would like to say that Ellis, thank God, is definitely on the road to recovery. He is several steps ahead of Ben in this journey, and is doing better each day. Both of these boys are in our hearts and thoughts every second of every day... and these little fighters melt our hearts everyday.....please send your prayers his way as well as Ben's. More updates to come....

October 23rd

Today is the first day after Ben's surgery and overnight he did really well. Praise God!! Currently his oxygenation ('sats') are really good and his heart rate came down overnight like the doctors wanted it to. They are planning just a few minor changes on his medication doses today, but the main goal is to let him rest. This morning, I came around to check on him and was able to catch rounds with the doctors. They were also quite impressed with how he is doing so far. After rounds, I went into his room and he was very calm and peaceful and opened his eyes and was just looking around taking everything in. Our son has been the most amazing gift and has taught us so many things it's incredible. Today, along with prayers for Ben, I'm going to ask of all our family and friends to take a little bit of extra time out of their busy schedules and focus on the good in their lives....(read an extra bedtime story, play for 5 more minutes when the kids ask, make time for your significant other.... and just REALLY enjoy and be thankful for what you have)....as that's our plan for the day as well. We really appreciate everyones love and help...(we also want to thank Chris and Dianne for watching the girls for us yesterday). Today is a good day.....

3rd surgery update

Benjamin made it thru surgery fine. His hernia was VERY large. In fact, there was not much diaphragm to work with, but there was enough to sew in the patch. Dr. Saito said she has done 15-20 of these surgeries and Benjamins is either the largest or second largest she's actually repaired. (Her partners have dealt with hernias this size though). Benjamins liver and spleen are also quite enlarged, so when attempting to put the abdominal contents back into the abdomen, a patch was required there (on the outside) also. Basically his incision is at least 6 inches across his abdomen, so pretty much across his entire belly, with a patch that is in the shape of an eye over it to allow for the abdominal contents to be covered up. The plan is to slowly close this patched area every couple days until it is fully closed. He also has 2 drains in his abdomen to allow any extra fluid a way to come out. His art line that was placed during surgery is already not working, so they attempted another one, but it was unsuccessful. They will be attempting another one tonight so they can draw his blood from it and monitor his blood pressure. His oxygenation is the range they want it to be and his carbon dioxide level is slowly coming down. His heart rate is the highest we've seen it yet and they are working on ways to try to bring this down. We have been told to expect him to become quite puffy in the next few days and that things are going to be rough for a bit until we can hopefully get him to calm down and settle back in to his comfort zone. He will continue to needs lots of prayers and loving....thanks for continuing to keep him in prayer.

2nd update on surgery

One of the surgical nurses just came in to tell us that they are sewing in the patch on the diaphragm. Apparently, it took longer than they thought to get everything out of the chest cavity. He is being transfused with some blood products....not exactly sure whose, but it was from one of our friends who donated. They really can't tell us anything more than that right now, but they said if they are still working on him at 5:30pm, they will come in to update us the progress at that point. We will try to keep you posted.

Surgery update

Well, Ben is currently in surgery. It is about 2:50pm and they are just getting started on the hernia repair. This could take anywhere from 1 to 3 hours. Earlier today, prior to surgery, they tried an art line in his right ankle, although it worked initially, the line slipped and so they knew another attempt would be required. He received boluses of pain/sedative medications to attempt this line, and he did really well with it. Before he got those doses, he was wide awake for some quality time with us this morning. We were able to hold his little hands and look into his eyes to give him a pep talk before all of this today. Our pastors came up to say a prayer with us this morning and Bernie and Connie from church came up to visit also. (Thanks for bringing us drinks and food). Currently we are sitting in the conference room with my mom and dad, Dave's mom, Laure, Kristy and James (Ben's best friends daddy). They told us so far, they have a successful art line in his right wrist and they have placed a broviac line in as well. We will attempt to give more updates as they come. Thanks for the continued support and prayers, keep 'em coming! Kelly

October 19th - Surgery ?

Well, Benjamin has continued to be stable with just a few episodes where his oxygenation has fallen for a brief time to lower than we would like, but as I said, he recovered, on his own quite nicely. He was a bit fluid overloaded which may have contributed to this, so they repositioned him and increased his medication to clear more fluid and then his oxygenation improved to some of the best numbers since being on ecmo. Ben's surgeon, Dr. Saito, is tentatively planning the repair of his diaphragmatic hernia for Thursday of this week if he continues to stay stable or improve a bit. After that, we will be in for a more tenuous period again as the surgery itself will be a big stress for him....and the recovery as well. This is not a cure-all, and we are in no way out of the woods when the surgery is completed. This will simply remove the abdominal contents from the chest cavity and allow the lungs and heart the room they should have had in the first place. Since his abdominal cavity hasn't had these organs in it, this will be a literal stretch for the abdominal portion of his body. Since baby's belly breathe quite a bit, this could initially make it harder to try to breathe as it could then put pressure on the organs that are normally in the abdominal cavity. He will also most likely take on quite a bit of fluid retention from the surgery as well....these things along with the pain from the surgery will all be stresses that could potentially affect him. I will try my best to update everything as often as possible, but as you can imagine, being with Ben will be a main priority. Also, if any status changes occur even right before the surgery, it could be postponed. Please continue to pray for a safe surgery and fast recovery for our little sweetie. Thanks, Kel

CT scan results

Well, today we had another sit down with the doctors. This time it was to go over the results of the CT scan. They did not find any evidence of a brain bleed on the right side which is wonderful because as of last weekend, we were told there was something suspicious on that side also and that wcould have been potentially devastating for Benjamin. Today they did confirm that he had a bleed between the brain and the skull, which they had suspected. The good news is that it is not significant enough to require surgical intervention or any type of reservoir or shunt...this should resolve on it's own over time....He does however have evidence of damage to the brain on the left side that may result in motor and sensory issues for him. Since the damage is on the left side of his brain, this will affect the right side of his body...this is the area that presented most of the movement when his seizures occurred. He will most likely be requiring a lot of therapy to help him with his coordination....but we are still very positive about this news. Considering how bad the results could have been, we feel very blessed that more area isn't involved. There is a great resiliency about babies that we as adults do not have...they can recover much more from injury like this that an adult could ever hope to. We are hoping for the best possible outcome for Benjamin, and still praying for a miracle, (because as any true believer knows, God can intervene at any point), but we will not know how Ben will actually be affected until he is older....seems that will again be determined by God and Benjamin as they seem to call all the shots...(and a lot of help from us). His blood gas after his move to the CT scan was actually the best he's had since being taken off ecmo last Thursday. He is also in isolation currently as of today. There is bacterial growth in his endotracheal tube that could potentially be dangerous to the other babies in the unit....he is and has already been getting treated for this. We should know more about this in a few days when the full cultures are back. For now, the plan is to continue to keep him stable and then provided no other major hurdles present their ugly heads, we should be able to start talking about surgery to repair his CDH soon. As always, please keep him in your prayers....he is such a little fighter.

CT scan

Just a quick update, he made the travel to and from the CT scanner fine. He has recovered nicely. He had one dose of a paralytic and 3 doses of sedation, and the little stinker still popped his eyes wide open during the CT scan. One of the nurses remarked, 'he's and ox!!' I'd say I have to agree. We are now anxiously awaiting the results of the CT scan, they said they definitely see something, but are waiting for neurology to give them the actual results. Keep praying that it will be minimal. I'll try to update later. Kel

Happy Birthday Benjamin

Happy 1 month birthday baby!! Benjamin has been behaving pretty decently the past few days, but don't tell him that....that seems to be when he starts to misbehave again. Our little sweetie has a VERY big day coming up tomorrow. He is currenly scheduled for a head CT at 12:10pm to assess the severity of the brain bleeds that resulted most likely from being on heparin while on the ecmo machine. We are simply asking for all of your prayers for a miracle...the move to the CT scanner is going to be a big production on it's own and is quite scary for us as well. They will have to take his IV tree, his nitric oxide, and will have to be bagged on the way to the scanner, then they will attempt to do the scan, but as usual, Benjamin is the boss, he calls all the shots. They are taking him up to the PICU to do the scan instead of downstairs, that way if we need any assistance it will be most readily available. I would also like to thank everyone for continuing to pray for our little baby and ask that you continue to. I will try to post a birthday photo later for him...after all, this is a pretty big milestone for him.

October 13th

Well, yesterday was another rollercoaster ride. When we got the call his numbers weren't recovering like they should, we were again very nervous and concerned about his status. When we arrived at the hospital, there were 2 members of our church family there along with my parents to greet us. Connie and Bernie (Bernadine), were the members of the church family who came to visit. They came to show their support and to also reiterate to me that everything concerning Benjamin is truly in God's hands and that no matter what God's will is, He will make sure we have what we need to get through this. They prayed with us and also visited with Benjamin. His numbers did stabilize back out again and then later in the afternoon he opened his right eye for us again...(the left one was still quite swollen from being on his belly for the past few days and laying on that side)...that was pretty amazing. It was the first time he had opened his eyes since last Wednesday night before he came off of ecmo. He also was moving quite a bit and grabbing our hands and responding appropriately to touch and stimulation. We are still so proud of our little guy, he is such a fighter. They flipped him on his belly again this morning at about 4:15am and the plans for today are to flip him on his back again later in the shift to help with swelling, etc... and possibly wean a bit on his ventilator settings if surgery is ok with it (the surgery Dr's call all the shots with his care). His ventilator settings are pretty maxed out right now, so if he can tolerate it, they want to back off a bit. I'm praying he will allow them to do this and will stay stable. I'll keep you all posted as much as I can on his progress. Luv, Kel

October 12,2009

We just received another call from the hospital doctors that Benjamin had to be suctioned (which is part of his normal routine) and then they did a repeat chest echo to check his heart... (his first one since being taken off ecmo) and that Benjamins oxygen saturation levels are not recovering like they have been. This just indicates that he is not tolerating things like they want him to. This whole experience has been a rollercoaster...we're on our way over, I'll try to update this asap with any changes.

Benjamin with his elephant from his sisters

Benjamin sleeping with his little elephant buddy that Emma and Elsa gave him.

Today was unbelievable. This past weeks events have been gut wrenching. I received a call early last week while on the way to drop Emma off at school that Benjamin started having seizures. They put him on phenobarbital to counteract these, but had several more while awaiting the medication to take full effect. Then we were told that they found a blood clot on the outside of his brain...on the left in the back. This was concern enough to tell us that he had to be taken off of ecmo (heart and lung bypass machine). This machine was his saving grace as of September 21st when he was placed on it...if we would have declined this machine, he would undoubtedly no longer be with us. We were to say the least petrified, and we stood by while they weaned him off the machine rather rapidly over the next few days. While he was on this machine, head ultrasounds were required to look for head/brain bleeds...then we were told the ultrasound found another place on the back left of the brain that appears to either have ischemia (lack of oxygen) or hemorrhage. We were told it appears to be on the white matter of the brain...this was a sit down talk with the NICU doctors, and this is never good. Then we were told yesterday am that another spot appeared on the right back portion, the doctors are much more concerned about this area. There are no words to explain how this felt being told this news...his lungs and heart were finally starting to improve, and then we were dealt this news. Then today, we decided to go to church to see our girls and gain some clarity on the situation. While we were there, Pastor Shane called us up to the front of church, we were on our knees on the steps at the front of the sanctuary and members of our church family came up and placed their hands on our backs to pray with us for Benjamin. It was very moving and emotional. Then after church several others came up to express their love and support...but then a woman came up and was so charged with energy and kept asking if we believed in the Holy Ghost and got more and more empowered as she went. She said she was pressed to come pray with us, and was looking right into our eyes, it felt like she was looking into us. Other family members were around and I swear the woman was speaking in tongue and kept asking for the Holy Ghost to put the power of a miracle into place and heal Benjamin. It was overwhelming to say the least. After church we went to lunch and while we were there my cell phone rang, it was the NICU doctor. She called to tell me the area on the right no longer appeared to be there today!!! She did say the left side does still appear affected, possibly including the cerebellum, but didn't know quite what to say about it considering the earlier right side findings were possibly 'wrong'. Please continue to pray, and hopefully more miracles like this will keep happening for him. We love you all!!

Benjamin has arrived

Benjamin David Hubble born September 15, 2009 at 6:31 pm, weighed 7 pounds 9 ounces and was 22 3/4 inches long. Benjamin was born with cdh (Congenital Diaphragmatic Hernia). On the outside Benjamin looks absolutely handsome. On the inside Benjamin is going to need a little work and a lot of praying to get him home.

This picture was taken just 1 hour 9 minutes after Ben was born. Already stabilized and on respirator, he was wide awake. God Bless Him.