Services for Briana

We will be having services for Briana this Saturday, Dec. 26th. Visitation will be at Heintz Funeral Home in Clinton, from 9 - 10:30 am, followed by a Mass of the Angels at St. Mary's Church, also in Clinton, at 11:00.
The Heintz Funeral Home address is: 10 East Park Row, Clinton, NY 13323.
There is a main village square which the road wraps around, and it is on that road.
We would truly be honored by anyone who would like to attend, but we certainly do not expect anyone to feel obligated. It is the day after Christmas, and the time of year when Mother Nature likes to surprise us. The support from all of you has already been so overwhelming, and we will always remain grateful for it.
Thank you,
Jim and Angela

Our dearest Angel Briana,
Our heart, our soul, our blood, our love,
With angels wings, You are with us from above.
Our hearts filled with sorrow,
We cannot have You here,
Still feel You in our arms,
Your presence is so near.
Here, and gone so swiftly,
Your time, far too brief,
Love for You will last,
Far beyond pain and grief.
A Breeze upon our faces,
A Songbird taking flight,
Warm Rain upon our skin,
Which Star are You tonight?
Forever in our hearts,
Your innocence so true,
Our dear sweet Angel,
Briana, we miss You.

Mommy, Daddy, Mackenzie

Parents, love your children,
People, love each other,
Take not one day for granted,
Share peace with one another.

"Angel" Briana Emily Hayes

There is no easy way to say this, Briana passed away this morning. Thank you all for your prayers and support.

There is not much that we can say now, other than Briana's 18 days with us were very special, and she fought hard from the beginning. Right up until the end, we were with her and we fought along side her as much as we could. We never gave up hope, until she told the doctors and us that she was ready to move on. At that time, they let us hold her and say goodbye to our sweet angel. She felt no pain, and the doctors and nurses acted with the utmost dignity, respect and compassion. We will never be able to thank enough the special people at Crouse, nor all of you for your support through all of this.

I pray that anyone out there who is currently experiencing something like this, or who may ever go through anything like this, please do not ever lose hope and faith. Sometimes things are just meant to be, but please stay strong and hopeful for the loved ones who need it. I truly believe that hope, faith and love can be just as powerful as any medical treatment.

If we may so humbly request one more thing from all of you, it is to please pray for all the families whose babies are still in the Crouse NICU, that they may remain strong and hopeful, and that they can bring their babies home.

We love you so very dearly Briana Emily, and we will do our best to honor your life by supporting other families. We miss you tonight sweet angel.

Pray for Briana

Briana needs your prayers today. She is very critical at the moment. The doctors are trying everything to help her right now.

I'm sorry I can't say much more.

Please keep your prayers coming.

~Angela

A few steps backward

Briana had a rough night last night. She was having trouble staying oxygenated before we left, and throughout the night, her condition worsened. They had to put her back on the oscillator, and they think she developed an infection based on the blood cultures they analyzed. With all of her IV sites, chest tubes, surgery sites, etc., there are many opportunities for infection. They are giving her antibiotics, and they will reanalyze her blood cultures later today. She is stabilized now, but not feeling well, and very intolerable of any activity.

It is certainly discouraging, but we kept the possibility of setbacks in the backs of our minds, as they are common, and Briana still has a long road ahead. As before, we will try to patiently wait this out while she recovers. The good news is that this time when she recovers, she does not have any surgical procedures ahead of her. It seems that each time she has a surgical procedure, she has a little setback to get through.

Briana is strong though, and we are trying to stay strong with her. Day by day, we will get closer to coming home. We hope and pray for all the other families here as well that their babies will get stronger and be able to go home soon.

Don't worry, I'll be OK.

This video was taken 15 minutes before Briana's surgery. It was very ironic, but she all of a sudden woke up right before. It was the most awake we had ever seen her.

Briana's 2 week birthday present

OK. I know it has been a few days since I have posted. I apologize. The past few days have been a little confusing. We were getting information frequently and it was back and forth at times. I tried to write a few times, but the words wouldn't come out.

So anyway, later in the day on Monday, Briana did come off of the oscillator, and was put on a respirator. It took her a while to adjust, she started out with 100% oxygen, but throughout Monday night and Tuesday afternoon, she adjusted and they were able to wean her settings down. She received steroid doses that lowered the inflammation in her lungs and along with Lasix, helped her to excrete some extra fluids.

She was looking good on Tuesday, and they told us that surgery was tentatively planned for Wednesday. Thennnn, after consulting with the cardiologist, they were going to wait for surgery. Her hypertension was still high, and they wanted to do another echocardiogram today, and if that looked good, perhaps surgery would be today, maybe Friday. OK. It was frustrating because we had to lower our excitement again, but if it was a better plan for Briana, so be it. Well, when we came in on Wednesday morning (yesterday), they told us surgery was back on for yesterday afternoon.

"Huh?!"

Apparently, her condition was not going to get any better until she had her surgery, so they decided to go ahead with it. Turn on the nervous switch again. Thankfully, a nurse that we love, Dee, was attending Briana yesterday, and it made everything so much easier to have her there. She made us feel much less anxious through the whole process. She switched out with another nurse before the surgery, so the new nurse could attend Briana during and after surgery, but Dee was still there throughout. We are very thankful to her for making the whole surgery easier to deal with.

We were hoping Dr. Ratner was going to do the surgery, but he was going to be out of town, so another surgeon in his group, Dr. Thayer, performed Briana's corrective surgery. We were able to consult with her before the surgery, and she was very good. We left the room about 3:00, and they told us it would be about 1 1/2 to 2 hours. At 4:45, a nurse came to tell us that everything was going well, but it would be a while longer. Well finally at 6:45, we were able to go see her. She did very well. They moved the abdominal organs successfully, and they used a Gortex patch to repair the diaphragm. She was obviously a little puffy, but she looked good. She has a 2 inch incision below her left armpit, and a chest tube for drainage. Her numbers were good, and she was on the same respirator settings that she was on before the surgery. HUGE...SIGH...OF...RELIEF!

As we learned before, we will celebrate somewhat quietly though, as there is still a long road ahead. We talked with the neonatologist in charge today, and she showed us the x-rays. Because the stomach organs are now removed from the chest cavity, there is an empty space. The body will not allow an empty cavity to exist, so what it does is fill with fluid. They now have to debate on which treatment to use to get rid of this fluid. As the neonatologist put it, it is as much an art as a science to take care of CDH babies. There are many possible bumps in the road ahead, each to be dealt with as they occur, and gradually, Briana will get stronger.

Thank you to everyone for your support.

Getting closer to surgery

Briana is doing well today. When we walked in this morning, she was on 30% oxygen, which seems to be her lowest tolerable setting on the oscillator. She goes back and forth between the 30% and 50% range, lower being better. At 30% this morning, her oxygen and carbon dioxide levels are good, so it would be safe to say she is gaining some ground. The nurse told us her scans this morning showed that she has some fluid on the outside of her lungs, as well as throughout her body, which is normal with the oscillator and not being able to move much. They want to get her to excrete the extra fluid, so they are giving her a concentrated protein medication which will help her body to pull the fluid from her cells, and with the Lasix, cause her to urinate them out. If she is able to excrete excess fluid, then this will help her hypertension, and they may try to get her off of the oscillator today, and back onto a conventional respirator, which is definitely a good step.

They let Briana do her own thing for the past three days, and just monitored her and kept her on a straight course. I think that Thursday night's little setback slowed down their treatment approach, which was definitely a good plan, because it gave her some time to adjust and plateau. Today, they think she is ready to slowly resume moving forward again. Their are no solid dates set for corrective surgery yet, but it should be this week.

Baby Steps

Excuse the pun.

Briana had a 'smooth' night last night. For the most part, she held course and just rested. Her numbers remained steady, with some small improvements in her carbon dioxide level. They removed her from the nitric oxide, which is a good thing, although they gave us the impression yesterday that it wasn't affecting much. We are trying to remain patient as Briana takes her baby steps toward improvement. The pediatric surgeon is supposed to come in on Monday and evaluate her for corrective surgery, which we are hoping will be next week.

There are many other families with babies currently in the NICU, and we certainly pray for them as well. We have met some wonderful people, and we inevitably have developed bonds with some other parents. For those of you who pray for Briana, please include these other families as well. This is certainly the most humbling experience I have ever had in my life, and to support the belief that things happen for a reason, I am thankful for the humility, compassion and patience this journey has instilled in me, and for the beautiful hearts of some of the people we have met thus far.

Hi Mommy

This clip is from Thursday night, about 8 hours after coming off of ECMO. She was waking up from the sedative they gave her for the decanulation. This was taken before her dip early Friday morning. We can't wait to get back to this point. I had some difficulty getting the video to post yesterday, but finally, here it is.

The CDH roller coaster

The day began with a 5:30 am phone call from the NICU telling us that Briana went downhill a little bit. They said it wasn't serious enough to come in, but sleep at that point was out. So we got ready and we were in the NICU by 6:30.

Like they told us, a dip after coming off ECMO was very likely, but when we left last night around 9:00, she was doing great. Her numbers were great, and she was very tolerable of the poking and prodding from the nurses, so we were feeling very good and thought we may have avoided the dip. Well, Briana just waited a little bit longer to surprise everyone. Apparently, her heart rate was elevated, and it seemed she wasn't getting the oxygen she needed. They put her back on the oscillator, which is an advanced form of the respirator. It delivers oxygen more gently, and does more of the breathing work than the other respirator. They also gave her some medicine to control her heart rate, some more sedative so she relaxed more, and also put her on nitric oxide, which helps oxygen to be delivered to her cells. She is stable now, which I know is a vague term, but it is good. They are just keeping her sedated, and doing more of the work for her for awhile, until she gets over this bump. She is definitely more pale again, but that will get better.

The diaphragmatic hernia experience is definitely a roller coaster. It harshly reminds us that nothing can be anticipated, and remaining in the present is the only way to remain, as hard as that is. We have to wait patiently, hope for the best, quietly celebrate the good, and keep our strength through the bad. Briana has already proven her strength, so we are staying positive and remaining patient.

Please keep praying for our little girl. Thank you.

Jim and Angela

Just an update to let everyone know that Briana did very well with her surgery. After waiting for about 30 minutes, one of the nurses came out and told us that the surgeon was also reconstructing her carotid artery, something that we previously had never heard about. We didn't even know that was a possibility, so we were a little extra nervous at that point. We ended up having to wait almost 2 1/2 hours before we could see her. Our nerves were a little fried by then, but she did well. She is now off of ECMO, and doing well. The surgeon explained that the carotid may not open up for blood flow, but he likes to give it a chance by reconstructing it. Hopefully it does, and that would be an extra bonus.

So she will have to wait a few days for the heparin to work its way out, and then hopefully Monday or Tuesday she can have her corrective surgery.

Thank you everyone for your thoughts and support through all of this. We are truly grateful.

Jim and Angela.

Getting over the first big hurdle

It is 11:15 am. Today is Briana's ninth day on ECMO, and her last. They gave her another trial off this morning, and she did well, so she is ready to come off. The surgeon is arriving at 11:30 to perform the decanulation. It is a 10 minute procedure, with a little clean up time, and thats it, no more ECMO!!!

After the surgery today, they informed us that she make take a little dip, which is very common and almost expected with the adjustment of her body now taking over, but that will only be temporary. She is going to have to wait a few days for the heparin to get out of her body before they can do her corrective surgery. Heparin is the anticoagulant that is used with the ECMO system to keep the blood from clotting, so right now, Briana's blood is very thin. Once the heparin is out of her body, she can have the surgery to move the abdominal organs down and repair the hole in her diaphragm, which we are hoping will be Monday or Tuesday.

Briana's First Test

We walked into the NICU this morning just as they were beginning Briana's first trial off of ECMO. Its 12:15 now, and she has been off for about 1 1/2 hours. She is still doing well, and they are beginning to talk about decanulation (removing her from the ECMO support completely). They will certainly take their time with this and be sure, because once she is off, she cannot go back on.

The decanulation itself is a surgery, so they definitely will not be removing her from ECMO before they contact the surgeons. She will probably not be decanulated today, but she is definitely heading in that direction, and getting closer to her corrective surgery. YEAH!

Her right lung still looks very clear and expanded, and overall she is doing very well.

Thank you to the D'Angelo's

When we went into the NICU this morning, there was a gift bag for us from our friends, the D'Angelo's. Inside was a guardian angel pin, which we will most definitely be pinning by her bedside today, along with a very nice photo album and journal. That was very touching. Thank you very much, Vince, Patty and Charlie.
We contacted the D'Angelo's after seeing their story on News 10 Now. Their son, Charlie, was also born with CDH, and they were also cared for here at Crouse. After we received the diagnosis for Briana, Angela and I felt alone as neither of us had ever heard of CDH. The D'Angelo's have been very supportive of us, and continue to offer their prayers and encouragement. We are very thankful to have them in our corner.

Sisters

Angela and I were looking at photos last night, and found that Briana looks almost exactly like her sister Mackenzie did when she was born. A few noticeable differences, and we obviously have to look past all of Briana's tubes, but almost exact. These photos are Day 1 for each of them.

Lucky 7

Today is Briana's seventh day on the ECMO machine, and we received good news this morning. The doctors and nurses told us that this morning's echocardiogram shows that her right lung is very clear and much more expanded, and her heart sounds better. They took her off the Prostaglandin, which makes us very happy and Briana even happier, because the side effects of that drug make her feel very uncomfortable and nauseous. Because they are stopping the Prostaglandin, the arterial duct will close again, and when they do another echocardiogram, they will see how the heart is functioning, and if the improved lung helps to regulate the blood flow. We hope that it does, so the blood does not back up as it did on Sunday, and raise the pressure in her heart. She has been urinating well all night with help from the Lasix, so she is MUCH less puffy today, and looks so much better. The removal of the excess fluid also attributes to lowering her hypertension. I mention hypertension a lot, because that is the primary obstacle to her having her corrective surgery. Another thing they told us is that hopefully they will do a trial tomorrow with her "off" of ECMO. We pray that goes very well.

Briana's overall condition is still very critical, but our hearts and minds exist within the hour to hour improvements she is making. That is the only way to be. When we were deciding on a name, we both liked Briana. It is of Gaelic/Celtic origin, and it means "strong". She is definitely fulfilling that name.

Thank you to all for your support and prayers.

Jim and Angela

One Day at a Time

Briana's sixth day on ECMO. Not much new to report, things are pretty much the same as yesterday. Briana is still on the medicine to keep her arterial duct open, Prostaglandin, which is what I couldn't remember yesterday. She has been getting Lasix throughout the day, and that is helping her to pee away some excess fluids, which will also help relieve some of her hypertension. They did not do another echocardiagram today like we thought, but as the nurse explained to us tonight, that is ok. I guess we were under the impression they were waiting for an echo to determine that the pressure in the heart was coming down, but they know that it is getting better because they hear a louder murmur with the stethoscope. As it was explained, Briana is only requiring 20% of the oxygen they are currently giving her, so in laymans terms, (which the more tired I get, are the only terms I am able to understand), she is doing exactly what they want her to be doing. One day at at time. You take as much time as you need Briana. We are not going anywhere. I have a feeling tomorrow is going to be a good day with some improvement.

Getting over the 'bump'

It appears that Briana is beginning to get over the 'bump in the road' from earlier today. There is a different team on staff now, and one of the nurses that has been with Briana over the past few days is on again now, and she gave us a much better explanation of what happened this morning. Not to discredit anyone, they are all great, but some nurses are much more patient and compassionate with their explanations. It is certainly a lot to take in and understand.
She explained that there is a duct, (medically termed "Patent Ductus Arteriosus") that will close after babies are born when the lungs begin to function on their own. Because of Briana's hernia, and the fact that her left lung is extremely underdeveloped, her lungs aren't doing what they normally would to promote blood flow. So the lungs weren't pumping the blood through, and the Patent Ductus Arteriosus was closing, and the blood had nowhere to go and was backing up into the right side of the heart, thus causing the increase in pressure, or 'pulmonary hypertension' in medical terms. This pulmonary hypertension is Briana's main nemesis at this point, because that is what needs to be under control in order for her to have her surgery.
The name of the medication they gave her this morning to open that duct escapes me at the moment, but I will put that in the next post. It is a long name, starts with a "P", ends with "glandin". When they listen to her heart with a stethoscope, they believe they are hearing an extra murmur now, so that is a good sign that that duct is opening, and the pressure will begin to come down now. They will verify that with tomorrow morning's echocardiagram. Fingers crossed.

A minor 'bump in the road'

Today is Sunday, Briana's fifth day on ECMO. We just visited her this morning and received the updates from the doctor. Overall, she is still OK, but she encountered a 'bump in the road' last night. I will try my best to explain things, I have still not completely grasped what we were told. The cardiologist, Dr. Smith (who by the way, is a truly wonderful and compassionate doctor) did another echo on her heart this morning and found that the pressure on the one side was very high. They administered a different medication to open up one of her valves and increase blood flow, and in turn alleviate pressure. They will have to perform another echo either later today or tomorrow morning to determine if and how the valve responded to the medication. It is certainly discouraging news, but we are not letting this get us down. CDH is unfortunately a volatile disorder, which doesn't allow us to get ahead of it at all. We just have to continue hoping for the best, and handling these setbacks in stride. We certainly have to remember that this is still the beginning of the road, and we face many hurdles ahead of us.

On a happier note, we were able to spend some time with Mackenzie yesterday. Angela's aunt and cousin who were watching her brought her to the Carousel Mall here in Syracuse. Although it is very hard to leave Briana, it is just as hard to not see Mackenzie, so we are trying to balance it out as best we can. As were we, she was very excited to see us. We all took a carousel ride together while we there. Although it was brief, it was obviously very uplifting to see her. I am still amazed and thankful that she is handling this all so well. I don't know how we would handle it if she wasn't.

I will continue to update, please continue to pray for Briana. Thanks as always for your support.

Briana is doing well

Today is day 4 for Briana on her ECMO, and she continues to do very well. She is a little more puffy today, but that was to be expected. Her numbers have been consistently good since Thursday, and she has been very stable. She is very awake today, moving around and opening her eyes. If they do not change, we are going to have another blue eyed cutie on our hands. Watch yourself boys!

The neonatologist spoke with us briefly and discussed how they will 'test' taking her off of ECMO. What they will do is clamp off her blood supply hoses temporarily to monitor how she does on her own, and gradually they will be able to determine when she is ready to come off. He said they will not begin that today, perhaps in the next few days. Regardless of when they begin, it is great to hear that subject discussed.

We are settled in at the Ronald McDonald house now, and it is a great place. We are so thankful to have that available to us.

Thank you to everyone for your continued support. We will continue to update as often as we can.

Jim and Angela

Day Two

Hello Everyone. Let us first say Thank You to all of you for your support, advice and comments. It means the world to us.
Briana's second day has been a very stable one, from very early in the morning until now. One of the nurses said she was "surprisingly" stable all day, leading us to believe she is doing better than they expected early in the ECMO. Encouraging. It is all hour to hour, minute to minute at this point, and we gladly accept encouraging news one ounce at a time. To stand with her and look at her, her color is much better due to the ECMO supplying her body with the oxygen it needs, and she looks very comfortable. They adjust her pain medication as necessary. The team of nurses and doctors in the NICU department here at Crouse are truly fantastic. They are on top of every imaginable aspect of Briana's well-being 24/7. We were told several times by several people of just how great the NICU is, but to see it is to truly understand how great. The same applies for the rest of the nursing staff we have dealt with, accommodating, compassionate.
Angela is doing well. She is recovering well, and has been able to get some rest since yesterday. She is eating well, walking well, and doing well emotionally with everything, admittedly, better than myself. A mother's strength.

Our other daughter, Mackenzie, came to visit us today. We were obviously very happy to see her, and she was the usual character we know her to be. She came right into the room and made herself at home with her toys. We wondered how she would handle the whole situation, but as usual, she understood immediately and wasn't worried or anxious at all. Ya gotta love kids, huh? If only we as adults could remain so unabashedly open and true. She didn't hesitate to immediately talk to the nurses as they came into the room neither..."Are you going to check Mommy?", or my favorite, "No, we don't need anything."
Tomorrow, Angela will be discharged and we will be set up at the Ronald McDonald house, another friendly and accommodating place to be. It is only a few blocks from the hospital, so it will be convenient to stay with Briana.
Again, thanks to everyone for their support. Please continue to pray for Briana.
Jim and Angela

Welcome Briana! December 2nd, 2:34 am.

Briana Emily Hayes entered the world at 2:34 am on Wednesday morning, December 2nd. She weighed in at 6 lbs. 5 oz., which is great. She arrived earlier than everyone expected. Angela was given Cervadil at 8:30 pm on Tuesday, which is given to start softening the cervix in preparation for labor. In some cases like Angela's, it can induce full labor. At 1:30 am, she was at 2 cm dialation, at 2:15 am she was 5 cm, and Briana was born at 2:34 am. So it all happened very fast, and much to Angela's dismay, they missed the chance to do an epidural. Thankfully the delivery took only 5 minutes, three or four big pushes.
As soon as Briana was out, the NICU team went to work, and we were able to see her for a minute before they took her to the NICU.
When we were transferred from delivery to post-partum, we were able to go into the NICU and see her. She was on maximun support, and doing ok, but there were a few issues they were keeping their eye on. The heart was not functioning 100% due to the compression from the abdominal organs, and she was not getting all of the oxygen into her bloodstream that they wanted. Later in the morning on Wednesday, the neonatologist came down to talk to us and informed us they were going to have to put Briana on ECMO, which was not preferred, but it was necessary. ECMO is a system which oxygenates the bloodstream by completely bypassing the heart and lungs, which allows them to rest and continue developing. To do this, they insert tubes into the carotid artery and jugular vein and pump her blood through a machine to oygenate it. The procedure in itself can be risky, which is why we didn't prefer it. The process can also delay surgery to repair the hernia, because the blood is thinned during ECMO. We were pretty nervous about it, but as I was writing this, the surgeon came down to tell us that it went very well. The plan now is to leave her on this for as little amount of time as possible, and gradually take her off of it as her body works for itself. We are preparing now to go and see her again. As always, we truly appreciate your thoughts and prayers, please keep them coming. We will keep in touch.
Jim

Inducing/Visitors

Amanda Internicola here,

Ang was admitted to Crouse this evening around 5pm and will be continually monitored before they give her the Pitosin later tonight. While the Pitosin chemically induces labor, it could still take up to a few days to deliver Briana. According to hospital staff, the H1N1 case levels in the county have stabilized, so the previous visitor limitations have been lifted. Visiting hours will now resume to their normal times, ending at 8pm with no strict limits on numbers. If you are going to visit, you will need to check in and obtain a visitors pass at the front desk. However, if you are feeling even slightly sick, please do not go to visit her in the hospital. If you do plan on visiting, it can't hurt to still call beforehand, just to make sure the visiting limits have not changed again. If you are unsure or have any questions, you can give me a call, (or Nikki or my dad if you don't have my number). That's about all I know at this point, I will continue to update as I hear more from Ang and Jim. Keep them in your prayers.

Hi Everybody!

Last Appointment 11/30/09

We had our last appointment yesterday 11/30/09 before they induce. I will be admitted today at 5pm to Crouse Hospital. I am nervous and excited. They told us yesterday that it could take up to three days when they start to induce. I am hoping that everything goes smoothly.

Visiting hours are VERY strict. Please do not plan on visiting us at the hospital unless you are contacted or you contact someone in the family that knows what is going on. I am only allowed 2 people per day from 12pm-8pm because of the H1N1 flu. Please repect the hospital rules and again please contact us first if you would like to visit.

No one will be able to see Briana until she can come home. The NICU has very strict rules as well. Only Jim and I are able to go into the NICU to see her. There are many critical babies in the NICU and they need their health, safety and privacy.

Again the best way to find out any information regarding us and Briana will be to continue to update yourself on this blog site. I have my sisters ready to update when we give them the word.

When we are able, we will take pictures of Briana for everyone to see.

Please pray for us!
~Angela