Calling all doctors, Brody has to poop!

Yesterday, Brody started to gag on his breathing tube, which caused him to throw up most of his feeding. This made him really mad and his tummy became very distended. He looked really big, so the doctors were called in. They did a chest and abdominal x-ray and there was a lot of air in that tummy. So they ordered a shot of glycerin to help him poop and just as the nurse was about to give it, he pooped. All that excitement, and little Brody just had to poop.

Later that day, he threw up more, but he tolerated his feedings overnight. The doctors assure us there is no sign of the NEC (the bowel inflammation they were concerned about). Today, they are going to increase his feedings to 19 mL per 3 hours. This makes Mom nervous, considering what happened yesterday as well as the fact that the most he has ever had was 17 mL per feeding. The maximum for his weight is 28 mLs per feeding.

Today, they pulled out his arterial line, which was the line they had in his right hand to take the blood for labs.  They will still need to take his blood, but not as often. They will now take blood by pricking his foot. Although it is painful to get your foot pricked, it is better to have the arterial line out because of risk of infection plus there is a small risk it can cut off blood flow to the fingers.

He went backwards on his vent settings for the second day in a row. He is having trouble getting rid of carbon dioxide and his pH is staying alkaline. So they are giving him a 5 day round of steroids to help his lungs clear up and starting him on an oral diuretic to help his kidneys flush out the waste products.

They are removing the pain medicine IV drip today, which has been weening since the surgery. He will get doses of it through his IV now to ween him completely. It is a good step to be off the continual drip.

We are hoping to get back to St. Cloud soon, as this place is starting to get to Mom. The doctors and surgeons have been wonderful, but everything else about it is horrible. They are talking about next week, as long as Brody continues to tolerate his feedings.

Dad's coming today!

Russ had to work this week, but he is coming back tonight. We are very excited and we missed him!

Brody is doing great. He went backwards slightly on his ventilator settings, but not too much. We posted a while ago that the doctors were concerned about his bowels. We are happy to report that, after he started eating on Wednesday, he has had a couple of good poops! This means that he is tolerating his feedings. So far, so good.

The doctors are thinking that he may be ready to be transfered back to St. Cloud next week. We are trying not to get too excited in case of a setback. But, we would really like to be back home. We'll keep you posted!

April 27, 2011

It has been a long time since the last post. We've had quite the time here in the last few days. We both got sick with colds on Friday, so we stayed away from the hospital on Saturday. Sunday, we visited a couple of times but tried not to hang around too much beacause we didn't want to get Brody sick. Monday, we went back to St. Cloud for doctors appointments and Jenny's back started to hurt. By Tuesday, she could hardly move so it was back up to St. Cloud for the chiropractor. Thanks Dr. Mike! The back is a little better today, but still really sore. But, enough about us.

Brody is getting better every day. His incision is healing nicely and Mom got to hold him last night. His oxygen needs are varied and it is a challenge right now to find the best ventilator settings. The trick is to get him to do as much of the work on his own as he can tolerate, but still give him the breathing support he needs. He got a bigger breathing tube last night because the old one became too small for his airway and air was leaking out around the tube.

His heart, brain, bowels, kidneys and other organ systems are working well. Now, the lungs need to get better. He had his first eye exam yesterday and his eyes are a-okay!! There will be a follow up in two weeks.

My First Eye Exam

 

He started eating yesterday! We are starting slow, with 3 mL every three hours and he is tolerating it really well so far. The doctors haven't done rounds on him yet this morning, but we assume it will be increased today.

We added pictures to the posts called "April 22nd" and "Surgery".

Happy Easter!

Happy Easter!

No posts yesterday because Russ and I both came down with bad colds. We stayed away from the hospital yesterday, which was difficult. We came back today and we are wearing masks and not touching Brody until we feel better.

Brody is still doing well and he is stable. He is slowly being weened from the Fentinol drip, which is for his pain. Once they can ween him from the drip, he will still get doses in his IV as needed. He is finished with one antibiotic, but he is still on two others. He still has a lot of fluid on board, but he is looking a lot less puffy than the previous picture. They are doing a chest and abdominal x-ray tomorrow, so we will learn more about his progress then.

His head ultrasound came back as good news! His hemorrage has shrunk and it is now a grade 2! That is great news.

April 22nd

Happy Birthday to my brother Chris, who is overseas. Stay safe.

Brody is doing great this morning. We moved into the Ronald McDonald house this morning. We were very overwhelmed when we saw the generousity of this place. We will post pictures tonight, but we wanted to get back to be with Brody. The room is really nice and the pantries and refrigerators in the kitchens are fully stocked. There are different groups that come in each night to serve dinner. There are activities and shuttles to different places. They even have a dog! It is unbelievable how kind people are to provide this resource for families.

Midnight

Mom was thinking about Brody and couldn't sleep, so she and Dad went down to see him. The nurse asked if we wanted to hold him. We were nervous about this because it is so soon after his surgery and removal of his chest tube, but she assured us she would not even mention it unless she knew it was safe. Of course we weren't going to argue! Dad was generous enough to let Mom hold Brody; we hope he will get a turn soon.

I Don't Want To Miss A Thing

Aerosmith

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
Far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Well, every moment spent with you
Is a moment I treasure

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you, baby
And I don't wanna miss a thing

Lying close to you
Feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes and thank God we're together
And I just wanna stay with you
In this moment forever, forever and ever

I don't wanna miss one smile
I don't wanna miss one kiss
Well, I just wanna be with you
Right here with you, just like this
I just wanna hold you close
Feel your heart so close to mine
And stay here in this moment
For all the rest of time

Fluid on Board

As you can see, our little baby is quite bloated these days. He had so, so, so much fluid pumped into him during this ordeal. But it is necessary for his recovery. He has needed blood and plasma, blood pressure medicines and antibiotics, nutrition and so much more. He received diuretics today to help him get rid of the excess fluid. All we can do is wait until he can flush it all out.

He had a catheter in for a while because he wasn't peeing and his bladder was full. Then he was peeing so much that the diaper was wet in addition to what was going into the catheter, so they took out the catheter. Then, he wasn't peeing again so they had to put a bigger catheter back in. Then he started peeing around that catheter, so they took it out. Poor boy!

Let's see, what else? His vitals remain stable today. They are weening him from the dopamine, but they can't do it too fast, otherwise his blood pressure goes down. He opened his eyes a few times today, briefly. He is still pretty out of it, but that is good while he recovers. They removed the chest tube this morning.

Mom and Dad received word today that an opening came up at the Ronald McDonald house, so we will be moving in the morning. It will be difficult to stay away from the hospital, but the boarding rooms aren't available for the long haul so we need to go. We are glad to have a place to stay that is close. We'll post more tomorrow. Good night!

Getting Better

Brody is getting more stable. He is still a very sick baby, but he is making progress. Tomorrow morning, the chest tube will come out. His blood pressures continue to fluctuate, but not to dangerous levels. He is very swollen, but his body is slowly getting rid of the extra fluid. Today, the activities of the past few days caught up with mom and dad and we are very tired.

Tuesday night

Hello. Brody has done very well for the remainder of today. Going into the night, he is stable and resting. He is still mildly sedated with the same medication he has been getting for pain all along. He has a bit of edema, or swelling, from fluid retention. Otherwise, he looks great. He has really good color and his vitals are excellent. The doctors are really impressed with how well he progressed today. Mom and Dad are running on very little sleep, so we will get some rest tonight knowing that our little boy is safe. Good night, all, and we'll post more as things develop. Love, Russ, Jen, and Brody



The IV Tree - he had two of these at one point in the night. Eleven pumps all together.
Now, he is down to just three pumps which contain his pain med and nutrition.



The incision is on the left side of his back, just above that white dressing. It is covered in steri-strips. The chest tube is in the incision, but it is secured by his side. It is the big white tube and it looks like it is coming from his diaper. The rest of the tubing is what he has had all along; his ventilator tube coming out of his mouth, his blood pressure cuff on his right foot, the PICC line coming out of his left leg, the monitor leads on his back and chest. The IV lines on his head (two of them) and left arm are not being used, but they were previously. They will leave the IV lines in until they no longer flush; they don't waste an IV line in case they need it again.

Brody's condition became critical during the night as his body tried to regulate its blood pressure. His blood pressure became dangerously low. It was determined he had low blood volume. They gave him three different IV medications to increase his pressure as well as two blood transfusions. His pressure has stabilized now and they are weening him off of the blood pressure medicine.

He is back on the old ventilator and his lungs are doing well.

Of greatest concern now is his gastrointestinal system. When the PDA is open for as long as it was, the bloodflow goes to the most critical parts of his body, such as the brain, heart, and lungs. The gut and kidneys are the last priority, so it can cause some stress to the intestinal tract. His tummy has been distended, although it looks pretty good today. During an abdominal ultrasound, it was found that he has inflammation in his intestinal lining. This inflammatory process can cause holes in the intestinal lining, leading to a perforation. This needs to be watched extremely close because if a perforation were to occur, immediate surgery would be required. He was given a full spectrum of antibiotics just in case and the surgeon was on hand last night while they ultrasound was being done. It was determined that there was no immediate danger of perforation, however, they are doing constant monitoring of the inflammatory process.

We were told today to expect to be here at least another 2 weeks from today. Brody needs to be near the surgeons in case something happens in his intestines.

Surgery Notes

Brody's surgery took a little over an hour. He did really well. The next couple of days are going to be rocky as his heart gets used to the new way it needs to manage the blood flow throughout his body. Basically, he is going to get sicker before he gets better.

 

Before Surgery. Prep is done and surgeon is on his way

 

He has a chest tube, which is placed in his chest and goes out of the incision. It runs down to a box that has water circulating in it. The reason for the tube is mostly precautionary. The nurses are watching closely to see if any blood or fluid starts to come out. Then, the situation is evaluated to see what is going on. Seeing the fluid is better than having fluid build up in the chest cavity and not know it. The chest tube also allows air to escape as opposed to building up in the chest. The picture below was taken just after surgery; they did move the box out of the way, further under his bed so it can't get kicked by accident.

At about 1:00 p.m., about an hour after the surgery, Brody had his first big problem. His oxygen saturation dropped and he needed to be switched to a different type of ventilator called an oscillator. Instead of the old 40 to 50 normal breaths per minute, this other ventilator pumps hundreds of little breaths per minute. It vibrates and sounds sort of like a quieter version of a jackhammer. It ensures his lungs stay inflated and he is getting the oxygen he needs.

Mom and Dad "holding" Brody before surgery

Brody after surgery; still pretty sedated





Surgery

Brody just went in to surgery, 10:30 a.m. Now, we wait.

Surgery Tomorrow and Transfer to the U

Brody's transfer to the U of M went well today. He slept during the entire trip and they said he was a champ. He is settled in the new NICU for the night. It is definately very different here and Mom and Dad are trying to get used to it.

Transport house as it arrives in St. Cloud                       Getting ready to go

Getting ready to go                                                          I'm ready, let's go!

The surgery is planned for 9:45 a.m., although it is not officially scheduled so the time might change. We will keep you posted!

Heading to the U

Well, we are heading down to the U of M tomorrow. Brody's PDA (Patent Ductus Arteriousus) is not closing on its own. In fact, it is wide open almost as far as it can be open. Over the past week, his heart has gradually enlarged, so we can't wait it out any longer. Brody is getting an ambulance ride in the morning. He'll get settled in to the NICU at the U of M on Sunday and the surgery will be Monday. We just found out this afternoon, so these are about all the details we have. We are packing tonight and plan to be down there for 4 or 5 days, depending on how quickly he recovers.

As for the surgery, it will be in the NICU. They will make a small incision on his side between his ribs and place a metal clamp on the ductus. When they place the clamp, they will do it slowly so his heart has a chance to adjust its bloodflow. We are told this is a very common procedure, yet we are still very concerned.

We thank you for your prayers.

Novena in Urgent Need
To the Holy Infant of Prague

(Recite every hour for nine consecutive hours, or, a given hour of the day for nine consecutive days.)

O JESUS, Who have said,
"Ask and you shall receive,
Seek and you shall find,
Knock and it shall be opened to you,"
Through the intercession Mary,
You most Holy Mother,
I knock, I seek, I ask
That my prayer be granted.
(Mention your request)

O JESUS, Who have said,
"All that you ask
Of the Father in My Name,
He will grant you,"
Through the intercession of Mary
Your most Holy Mother,
I humbly and urgently ask
The Father in Your Name
That my prayer be granted.
(Mention your request)

O JESUS, Who have said,
"Heaven and earth shall pass away,
But My Word shall not pass,"
Through the intercession of Mary,
Your most Holy Mother,
I feel confident
That my prayer will be granted
(Mention your request)

Brody has a touch of pneumonia, which they caught early and are treating with antibiotics. The antibiotics started last night and the chest x-rays already looked better today. Brody is getting some good sleep today. We are giving him a break from holding him until he feels better. He is getting some more blood tonight. He weighs 2 pounds, 11.5 oz., one pound more than his birth weight!

Brody likes to have his legs stretched out!

We hold Brody skin-to-skin (we pulled the gown closed for the picture) and they call it Kangaroo Care. Russ was holding him tonight and he kept stretching his legs out straight. His foot found Russ' belly button and he was pushing his foot down in it.

Brody gained 70 grams yesterday, so he is 2 pounds, 10 ounces today! He began a course of antibiotics due to a possible mild infection. The bacteria has been showing up on his lab tests for a while, but it is a common bacteria found on everyone's skin. He has been showing a slight increase in white blood cells, so they are going to try to get rid of it before it gets to be a full blown infection. 

Brody was spitting up quite a bit, so they backed off on the amount of fortifier they are adding to his milk. They began adding protein and lipids a couple of days ago, so they stopped that. He is still getting milk fortified with some formula to give him extra nutrients. They will try again after his antibiotics.

We had a video on yesterday's post, but it wasn't working so we will post it on Jenny's facebook. If you aren't on facebook and want us to e-mail it to you, please send an e-mail to rjtiernan@hotmail.com

Brody has been on his tummy quite a bit lately because he seems to be comfortable and he is digesting his food better. He has been pushing up with his arms and legs and moving his head. He is very strong. He also likes to hold fingers. He has begun to smile when he hears the nurses laughing. At around 9:00 at night he is usually wide awake and looking around. His hair is getting longer, especially in the back.

4 Weeks Old!

Today, Brody is 4 weeks old! In some ways, it seems like a very long time, but on the same token we can't believe it has been four weeks already.

The doctor said the progression of his lung problem has plateaued. It will stay the same for a while, not sure how long, and then start to heal. It was still ramping up earlier in the week, so this is good news.

Poor Dad has been taking the brunt of Brody's spit ups. He was thrown up on twice on Friday night and once today. Mom has been lucky to avoid this so far, but she is bound to get it one of these days. We think he is spitting up because of the new things they are doing to fortify the milk and his tummy is not used to it yet.

Brody had his first photography session today. The March of Dimes sponsors a free session for NICU babies. Since he is intubated, the photographer was very limited in what she could do. Even though there weren't many poses, we can't wait to see the pictures! We will share them as soon as we get them.

Saturday, April 9th

Brody gained more weight, so he is now 2 pounds, 7.5 ounces. We are really starting to notice when we hold him that he is "filling out". He is now eating 17 mL every three hours, fortified to 28 calories. Today, they started adding fat and protein. His lungs appear about the same on the x-rays, but his oxygen needs are a little lower. He is getting the enhaler treatment every six hours and the doctor said it is really helping him to take deeper breaths and clear out the "gunk" from his lungs. He is having very restful days. We are now holding twice a day for about an hour and a half; me in the morning and Russ in the evening. He really likes it. When we put him back in bed he looks around, as if asking "where'd you go?"

Thursday

Brody is doing very well today. Mom held him for a little bit this morning, until his tube leaked. It has actually been leaking all week, but the leak got worse this morning. The good news is that they found the source and now the leak is zero! His blood sugar continues to be high, so they started an insulin drip this afternoon. He is opening his eyes wide and looking around now. So precious. He now weighs 2 lbs., 4 oz.

Wednesday, April 6th

Brody is doing well today. He had another blood transfusion yesterday. The inflammation going along with his lung disease is still ramping up, so he is requiring more oxygen than before. This was described to us as typical for this stage of his journey. Hopefully it will start to clear up in another week or so. He is getting an inhaler treatment similar to what asthmatics would receive. This is because the air from the ventilator doesn't seem to be getting into his lungs as deeply as the doctors would like to see. Brody's blood sugars have been high, so he is getting insulin.

Brody has developed a hernia. In premies, because they are not supposed to be pooping yet, their little bodies aren't supposed to be bearing down. So part of his small intestine is protruding. Right now, the small intestine can be gently pushed back to where it is supposed to go. The hernia will not cause Brody any problems as long as it can be pushed back. It is possible that the small intestine could get stuck and cause bowel obstruction, in which case it would be more urgent to get it surgically repaired. Either way, the hernia needs to be surgically repaired, but the plan would be to do it later. Depending on how he is doing with all of the other health challenges, it might be repaired before he goes home. The hospital would need to arrange for a pediatric surgeon to come up from Minneapolis who would be willing to operate on such a small baby. Otherwise, we may need to go down within a week of him coming home. Normally, it is an outpatient procedure, but he would likely be held overnight for observation since he is so small.

Keepsake Wooden Block

At the hospital today, Mom made Brody a keepsake wooden birth announcement block. The March of Dimes sponsors different activities to help support the families in the NICU. The footprints on the block are actually Brody's; to give you an idea of his size, the block is 2.5 x 2.5 inches.

Tuesday, March 5th

Good news on the head ultrasound. The hemorrage which reached the gray matter of Brody's brain is smaller. This means the blood is slowly getting re-absorbed into his body. When we first learned of the hemorrage, we were told that the damaged tissue will always be there, but hopefully Brody will be able to re-route his information so that there is minimal developmental problems when he is older. Also, since it is on one side of the brain (the left), the other side can compensate.

The clot in his ventricle is the same or slightly smaller. The important fact is that the ventricle is not getting bigger, meaning the spinal fluid is not building up. This is important because if the clot blocks the spinal fluid, it can build up and create pressure on his brain tissue. Pressure on the brain tissue could result in further damage and the need to place a shunt in his brain to drain the fluid. We pray that the clot continues to be re-absorbed on its own without causing further problems for Brody.

Another ultrasound will be done in a couple of weeks. At or around his due date, an MRI will be done to further assess the damage that occurred as a result of the bleed.

Brody is one lucky little man to have you praying for him. Please keep the prayers coming. Thank you so very much.

Love,
Russ, Jenny, and Brody

Tuesday, March 5th

Still no news on the head ultrasound, but the doctor is going to talk to us at noon.

Brody got a new breathing tube yesterday. He graduated to a bigger size because he grew! He is up to full feeds and he is gaining weight. He is now 2 lbs., 4 oz.

3 Weeks Old!

Brody is three weeks old today! He weighs 2 lbs., 3.2 oz. The nurses are doing measurements of his length and head circumference tonight at midnight.

The site of his PICC line got red, so they removed the PICC today. Those lines are supposed to last longer, but Brody hasn't had very good luck with them. So, now the only thing going into him is mom's milk, which they are fortifying to boost the calories. They are giving him pain medication mixed in with the milk as needed. It is usual to give this to anyone who is intubated because they become very agitated with a tube down their throat, even adults. We are very proud of Brody because the last time they tried to give him oral medicine, he spit it up. Today, he has tolerated it so far.

We spoke with the neonatalogist/cardiologist about the PDA. He doesn't plan to send Brody down to the cities for surgery unless the PDA starts to affect his functioning. Brody is maintaining his vital signs very well right now and he is active. As Brody gets bigger, the vessel stays the same size, so it can become less of an issue as Brody grows.

The funniest thing happened today. Dad was changing Brody's diaper and as soon as he took the diaper away, Brody had a blowout. It went all over Russ' arms and hit the back wall of the isolette. His bedding needed to be changed and his bed wiped down. We wish we could have had that on video. We were laughing so hard, including the nurses, respiratory therapist, and the parents of the babies next to us. Priceless. Sorry, Brody, for telling this embarrassing story to everyone but it is just so darn funny.

Tomorrow is the head ultrasound. We are really worried and we are not sure what to expect. We'll update the blog as soon as we know the results.

Saturday, April 2nd

Sprawled out in my tanning bed...

The ibuprofen did not change Brody's PDA. The doctor decided not to give another dose of ibuprofen because the first one is affecting his kidney function (he isn't peeing very much today). They are treating the kidney problem by "flushing" him with fluids. They are giving him fluids through his PICC line and then they will follow with a diuretic to help him pee it out. We will hear more about his PDA in the coming days. If it doesn't close on its own we may need to go to the cities for a procedure. Please pray for Brody that this vessel will close on its own.

Today, Brody weighs 2 lbs., 2.2 oz. He is eating again, 9 mL per feeding. The nurses just started fortifying his milk again to give it a calorie boost, from 20 to 22 calories per ounce. They will continue to add a calorie powder over the next several days to eventually get it to 26 calories. They turned down his ventilator a little bit this afternoon, so we'll see how he does with that. It is good news to be weening down on the ventilator support.

April 1st - part B

Well, Mr. Brody spit up his ibuprofen. Since there is really no way to tell how much was absorbed before he threw up, the doctor will need to consider the situation tomorrow. The original plan was to do another echocardiogram in the morning and decide if more doses of ibuprofen are needed. But, they might consider giving him tomorrow's dose, knowing that he didn't get the full dose tonight, and do the echo on Sunday. We can tell the medicine did not agree with Brody's tummy because he was quite fitfull when we left the hospital tonight. It is hard to leave when baby isn't settled in for the night, but we were so tired.

"Dear Nurses, you might think you can cover my hand with this sock, but I can wiggle it out. By the way, I can also wiggle my face right out from these goggles you have over my eyes. Now I would appreciate it if you would put the goggles back on, it is kinda bright in here. Love, Brody"

Friday, April 1st

Today, Brody started to cover his ears when his monitor beeped.

He got his light back for jaundice. It is very minimal, but due to his small size it was determined that he should have the light for a few days. The doctors will re-evaluate it on Sunday.

Brody's PDA (Patent Ductus Arterious) opened back up again. It was almost closed as of Monday, then they started to hear the murmur early in the week. Today, they did another echocardiogram and found that it is moderate-to-large. They are treating it with oral ibuprofen, given through his feeding tube. He needs to be watched closely for any side effects. Hopefully the side effects won't be like the other medicine, which was hard on his kidneys. That was the reason he was retaining fluids after the first treatment.

Despite the PDA problem, Brody is sleeping soundly and is doing good. Hopefully this round of ibuprofen will take care of the PDA for good.