Taking it easy

Changing out the ECMO tubes last night went very well.  Brenya swelled up only a little which is good.  It shouldn't take long for her to get rid of the extra fluid again.  The doctors decided it would be best to just let her rest for today so they are just going to watch her and not try anything dramatic.  They might try to take her off ECMO again tomorrow depending on how things look.  Her lungs are still a little cloudy from the bleeding she had and they said she might, although they haven't done any tests to make sure, have a little bit of pneumonia.  They have started giving her antibiotics just in case she does.  Overall she is doing very well and just needs a mellow day to help her heal up.    

We almost got a good picture with her eyes open.  She was starting to fall asleep and her left eye was just swollen enough that she had a hard time getting it open.  She has very pretty dark blue eyes. 

Still not ready

The doctors decided to try to take Brenya off ECMO today but with no success.  They really wanted to get her off so they didn't have to put her through the stress of changing her tubes.  Her lungs are fully opened now and they thought she might be able to do it.  She did last longer this time, they had the tubes clamped for about an hour before she went back on.  They said she was doing ok, but she was on 100% support from the ventilator.  They couldn't take the risk of taking her off because since the ventilator was at 100% already there would be no extra support to give if she needed it.  So she has to stay on ECMO a little longer which means they have to now change the tubes.  The biggest worry about changing the tubes is her swelling.  She just got back to her normal size and they don't want to cause her to swell again but they just can't avoid changing the tubes any longer.  They are in the process of changing the tubes as I type this update.  They have given her an anti-inflammatory drug and some medication to help her urinate more to help prevent swelling. Hopefully this doesn't set her back too much.

Needs a little more time

     They tried to take Brenya off ECMO today.  They did a trial where they clamped off the blood supply to the machine and let her body oxygenate on it's own.  After about 15 mins of her being on her own, Brenya's O2 levels dropped lower than a normal level so they had to unclamp the tubes and give her support again.  The doctors told us not to worry about this because it only means she needs more time to heal. The chest x-ray they did after the trial showed that her lungs need to expand just a little bit more.  The doctors would like to give her tomorrow to rest and then do another trial on Tuesday to see if they can take her off.  The problem with waiting, though, is that the tubes in the ECMO circuit have clots in them.  They may have to switch out the circuit before they can take her off.  If they do this, it may cause her to swell up again and set her back a little.  Hopefully, the clots won't move or get any bigger so they don't have to switch out the circuit and she can come off ECMO on Tuesday. 

Back on the road!

The surgeon came out at 4:00PM to tell us that everything went great! She had a "b" size hole in her diaphragm, "a" being the smallest hole. They patched it up with the tissue in the diaphragm. He put a patch over the sutures to make sure that it holds and seemed very confident it would keep. He said that her left lung is not as small as it could have been but we don't know exactly how big it is as of right now. We will find out in the next few days. 

                                                        

After surgery

                                                                    

Cute little not swollen hand!

Mom got to put a bow in her hair. 

Time for Repairs!

The surgeons told us today that Brenya would finally be getting the surgery that will move her intestines back down into her abdominal cavity where they belong and patch the hole in her diaphragm. They decided to do it before taking her off of ECMO because her lungs aren't doing their job to the fullest. They will do the surgery tomorrow morning if everything is the same or better then. Once the surgery is done, Brenya can finally get to healing and then we can tackle the task of getting her digestive track working! I will update the blog as soon as I can with the results of the surgery.

Keeping the foot off the gas

Brenya has been putting out more urine and her swelling has gone down. Some clots have shown up on her ECMO which are not getting any bigger but she has one that is in her body that is really small and shouldn't be a problem. However the doctors want to change out some of the tubing to make sure it doesn't become a problem. They tried to do so last night but she had a little bit of a fit about it. Her O2 saturation went down and so they decided to hold off until her lungs are cleaned out again. They have begun thinking about doing the surgery to repair the hernia but we don't have a set date yet. Right now we are just enjoying the fact that she is stable and waiting to see how her lungs are over the next couple of days. So we are just taking it nice and slow. We will post some pictures soon and let you guys know when we get more news. Thanks for all your help!

                                                           

                                                           The swelling is going down!

A Pothole

Yesterday, Brenya gave us all a real scare.  Around 6:00 PM the doctor called and told us she had begun to bleed in her lungs.  He said they were trying to stop it, but weren't sure if they could.  We did the only thing we could do and drove to the hospital to be with her.  When we got there they told us they had been trying some different things without too much success.  She had been bleeding since 3:00 PM.  The hope was, that with some different medication and waiting, she would eventually stop.  The also told us that since she was bleeding in her lungs, they worried about bleeding elsewhere in her body, especially her brain.  If she was bleeding in her brain, she would have to come off ECMO, but she could not survive without it.  They planned to do an ultrasound on her in the morning to see if her brain was bleeding or not.  It was a very nerve racking night.  All we could do was hope the bleeding in her lungs would stop and that there was no blood in her brain.  This morning, we called to get an update, hoping for the best but fearing the worst.  The nurse informed us the bleeding had stopped and the ultrasound showed no bleeding in her brain!  This was the best news we could have gotten and we were overjoyed.  But the nurse gave us more good news, Brenya was making more urine! We were very excited about this.
So right now she is working on getting the old blood out of her lungs and getting rid of all her extra fluid.  Her lungs are again oxygenating her blood a little bit.   X-rays show there is still a lot of blood in there though and it will take time for her lungs to reabsorb it all but things have started to work again.  She has already lost a lot of fluid.  She looks so much better than she did yesterday.  She is still poofy, but her nose and lips are little again.  The doctors say 1/4 of her body weight is still extra fluid she needs to loose.  Today was a much better day for her than yesterday with good improvement.  She just needs to keep working on the swelling and repairing her lungs so she can come off ECMO.    

Bumpy Road Continued

Mom finally got released at 7:00 tonight.  She is ready for, hopefully better nights rest in a normal bed.  It was hard leaving the hospital knowing we wouldn't be a short walk away from our little girl anymore but we know she is in good hands and they are doing everything for her.  There is no better place for her to be right now.  
Brenya is stable and making very slow progress.  She is taking little steps in the right direction. They decreased some of the medication she is on and she has responded well.  She also has  started producing more urine and her swelling is starting to go down.  The nurse tonight said that she was able to hear her heat beat through her chest, which she could not do yesterday because of the amount of swelling.  The ECMO is what caused the swelling.  Her body sees the ECMO as foreign so her immune system reacts causing the large amount of swelling.  Unfortunately, this is a case where her good immune system is making things a little harder instead of helping.  Right now, we just need to wait for her body to adjust and for the swelling to go down before we can go onto the next step.  I should probably explain a little about ECMO and why it's so important.  ECMO is basically a lung or heart bypass.  The pump blood out of her body, circulate it through the machine to oxygenate it then put it back into her body.  This helps in two ways.  First, it gives her the oxygen she can't get on her own because of her underdeveloped lungs.  Second, it lets the heart relax because it doesn't have to pump as hard since it's not trying to get blood though restricted lungs.  Now that these two things have been taken care of, her body can focus on fixing the hypertension in her lungs.  So the steps for right now are to wait for the swelling to finish going down, then her body can resolve the hypertension.  When that's done, the doctors can slowly take her off ECMO.  Once she is off, then they can finally do surgery to fix the hernia.  It's a long and tough road, but she is a strong fighter and we are all being very patient to let her body do what it needs to do.       

Bumpy road

Quick update for Sonya - She is doing okay. They were going to release her this morning but she had low blood pressure, and when they tested her standing blood pressure her heart beats per minute shot up. So they tested her hematocrit and it had dropped. They gave her some medication and we are currently waiting to test it again at 5 tonight. Hopefully we can get out of here and get some real rest.

Brenya - After about 6-7 hours after arriving at Primary they were looking at her o2 levels. They didn't look as good as they would like and at midnight they finally decided to put her on ECMO, they only put her on the veno-arterial track so the risks are not as bad. She had an inflammatory response to the machine as all healthy bodies should and she swelled up. Her urine output stopped at about the same time, so they gave her the necessary drugs to counter it. She is, as of right now, stable but on a lot of support and she started to produce urine again but not as much to get rid of all the excess fluid do to the inflammation.  They have been doing some chest x-rays and the right lung seems to be expanding more which is a really good thing.

Sorry for the late post! I will update again tonight!

our baby Brenya!

Just arrived from Mom!

Daddy loves me *sigh*

We are an awesome family!

Getting all tucked in to go to Primary's NICU!

They took very good care of me and I slept allllll the way. 

Brenya Dawn Flatland is in the house!

1:18pm MDT Brenya was born she weighs 6 pounds 5 ounces. Sonya is fine! Brenya is good too her O2 saturation is 80%. They are currently hooking her up to ivs and such and i will have pictures soon!

In the hospital

We are finally getting induced! We should be going into labor some time tommorow!

Testing Testing 1....2....3....

The first of many posts that will keep the loved ones and the curious informed. For those who have stumbled onto this by mishap or hearsay, my wife and I found out in late September 2010 that, after a few weeks of dedicated trying, we were pregnant with our first child.  Everything was wonderful, my work and school were flexible enough to allow us to move back to Idaho Falls, ID to be closer to our families. We continued to visit our OB/GYN in Pocatello, Idaho and had our first ultrasound was on January 4th. Everything looked great; baby was uncooperative and really made the ultrasonographer work for her money!  We decided at that time that we wouldn't find out what the gender was and would wait for the surprise. They took some measurements and gave us a due date, May 27th.  During this ultrasound they were unable to get a good look at the face and our doctor decided to schedule a second one to make sure there wasn't anything abnormal.  We got a cute recording of the baby kicking around and trying to push the transducer probe away.

March 22nd the second ultrasound.

We couldn't wait to get a good look at our baby's face. My wife and I had been discussing for the past few days if we should find out the gender. When the ultrasonographer asked us if we still wanted to wait to know the gender, the curiosity got the best of us and we said we wanted to know.  Within seconds we found out what it was and were ecstatic, however, the technician didn't seem to really share in our delight as much as I thought she might. She seemed distracted but I quickly ignored it. The ultrasound took much longer this time and the baby was being a real pain in the stomach, it would wiggle around and kicked back at the transducer probe with a lot of, what seemed to me as, resentment. After the ultrasound we went to a patient room and patiently waited for the doctor to come and consult with us. Almost as soon as the door shut my wife asked me if the ultrasonographer was acting a little weird. My wife then went on to say that there must be something wrong with the baby. I, of course, being the comforting and arrogant person I am, went on to tell her not to worry and that our baby was as tough as nails and a real mean kicker.  She then rolled her eyes and gave out a half-hearted laugh.

We went back to the waiting room to wait for our appointment with the doctor.  As soon as she came in she told us they had seen a problem on the ultrasound.  She said it looked like the baby had a diaphragmatic hernia and that it had some of its intestines up in the thoracic cavity. Sonya, my beautiful and loving wife, could barely hold back the tears as our doctor told us this horrible news. She was tough though and was able to ask questions. I, on the other-hand, couldn't feel my face or move. It felt as though I had been hit, point blank, in the stomach with a buckshot that was laced with sulfuric acid. The doctor went on to say that she wasn't very familiar with this kind of thing and that they had a specialist from Salt Lake, UT that comes down every two weeks that dealt with abnormal cases like this. She swiftly set up an appointment and answered, to the best of her ability, all of the questions we had. 

March 28^th meeting the specialist
            The specialist from Salt Lake did another ultrasound, confirmed the prognosis and then took some measurements. Both my mother and Sonya’s mother tagged along on this visit and asked all the questions you could think of in that kind of situation. We got a lot of information.  We then were put on a regiment of non-stress tests every week and he said that we would need to deliver in Salt Lake. A week after meeting with the specialist we received the shot for boosting lung tissue growth for the baby.  This was necessary because the lungs did not have enough space to develop fully since there were intestines in the thoracic cavity taking up room.  It wouldn’t fix the problem, but it would give the baby an advantage. 
April 18-19^th Going to U of U Hospital for the first time
            We met with a bunch of doctors and discussed what the game plan would be for when the baby is born. If Sonya didn’t go into labor by the May 18^th then they would induce her that night. We would then most ideally have the baby about 9 am the next day.  We are hoping that they baby will deliver naturally as to reduce the likelihood of complications but we might have to do a C-section. They would take the baby as soon as it is born it will be handed through a window into the intensive care unit where a doctor and 2 nurses would stabilize the baby. Then later that night, if the baby is doing okay, they would move the baby over to the Primary Children’s hospital. There the neonatologists and pediatric surgeons would work there magic and start doing surgery about 4 days after the baby was born.
            After getting a run down of the schedule they had us do an MRI and a Fetal cardio echo. We needed the MRI because they could see more accuracy the placement of the baby’s internal organs. Now neither the MRI nor the ultrasound can pick up how big the diaphragmatic hernia is but through those tests they reference the internal organ placement and make assumptions on how big it is. One of the references is the position of the liver, if it is down in the abdomen that means that there is most likely a smaller hernia. The other reference they use is on what side the intestines are poking through. If it is on the anatomical left side then the baby has a higher likely hood of surviving along with if the liver is down the baby will have a much higher chance of surviving. They found that our baby’s hernia is on the left side and the liver is down. This means our baby’s chances, although not 100%, are much better than we first expected.  The fetal cardio echo was to check the heart. It is pretty much the same as an ultrasound but a little more advanced and dealing with the heart only. The fetal cardio echo was great they said that there was nothing to worry about with the heart.  My wife and I were very happy to hear this optimistic news. 
            So, as of right now, we are waiting in Utah to go into labor or get induced. Whatever comes first. I can’t wait for our little baby to come into this world and show how tough it is. I mean really, its coming from some pretty tough families that are really good at making lemonade. My wife and I are both optimistic and grateful of the situation that we are in. It could be a lot worse and I am just grateful that my work could let me take this time off. We are also grateful that we found the problem and can be prepared to help our baby every way we can, such as coming to Utah for the birth.  Thank you so much for those that have helped us this far and for your support.
            My next post will be when we either are induced or go into labor. I will post A.S.A.P.