The past 2 days...

Over the past two days, not a whole lot has happened. Yesterday, Alexander slept all day long! Wes and I were a little worried when we reported our concerns to the doctor this morning, but she assured us that he was looking good and to "never wake a sleeping baby."

Yesterday, Alexander's medications were reduced and he started receiving breast mild through his NG tube. I got a chance to meet with the OT/lactation educator and she had me start exposing breast feeding to Alexander! I was one very happy mommy! I also got to have skin to skin contact with my boy! :) The OT suggested that I continue to have skin to skin contact during each of his feeds, to help with stimulation and preparation for breast feeding.

Today, Alexander has been awake for majority of the day, very fussy though. He also got moved into a crib AND we moved rooms! We are still in the CICU, just in another room. His night went well and today he is requiring a little more assistance with oxygen, as his levels are fluctuating. His doctors report that tomorrow they will begin weening Alexander off the steroids he is currently on and will continue to monitor his morphine dosage, to ensure there are no withdrawals. Skin to skin contact is still going on and exposing him to breast feeding. My day has now been consumed of pumping, staying hydrated, exposing him to breast feeding, pumping, and so on. I guess this is the beginning of parenthood...

If Alexander continues to make great progress, we could possibly be moved to the lower unit (Cardio Acute) in the next few days, which means we are closer to going home! Come on Alexander!! Show us how brave you are!! Be the little superman!!

2 weeks old today!

Not to much happened today but that Alexander's ventilator was removed and I finally got to hold my baby boy!

Last night was another positive night, keeping his oxygen and blood pressure at great levels and not requiring much pain medication. For today and tomorrow, his pain medication will continue to be closely monitored to be sure there are no narcotic withdrawals. He will start back on getting breast milk through his feeding tube tonight. We are continuing to work on his sucking reflex with the pacifier and he continues to do very well. I hope to speak with a PT and/or OT tomorrow about the feeding procedure. Alexander is still being provided some oxygen into his nose, just to help him be more aware of using his own lungs to breath.

When the doctors were getting ready to remove the ventilator this morning, I was a nervous wreck. Mostly because anytime Alexander has had a big change occur, he doesn't seem to adjust well to it. But he did great today! I cried when I finally got to hear Alexander cry again (last time I heard him cry was the night he was born). Holding him was a little awkward as Alexander still has quite a few lines hooked up. However,  I know that after a few holds, I'll be comfortable enough to want to hold him all day long! :-)

Wes and I are very happy parents right now and may actually get a good night sleep tonight!

Tomorrow might be the day...

 We've had another positive day! Alexander's ventilator pressure is being reduced, in intervals of every 4 hours, for one hour at a time. He's responding well and if he continues to respond well, then there is a chance the tube could be taken out tomorrow. Which means I could hold him tomorrow!!! :-) (I hope, I hope, I hope...)

Alexander also got to start receiving breast milk again through his feeding tube and is responding well to that too! Tomorrow I'm hoping to talk with an Occupational therapist (OT) and Physical Therapist (PT) about the feeding procedure. Sometimes OT's and PT's want to go to bottle instead of breast, to assess the baby's sucking and swallowing. I'm trying to stay away from the bottle and hopefully we can. Wes and I have been working with Alexander on his sucking reflex, providing him with a pacifier each time he is awake. He's doing very well with the pacifier, not requiring us to hold it very often, until he starts drifting off to sleep. :-)

4 generations of first born sons!

Alexander had lots of family visit him today: grandparents, great grandparents, aunt's and cousins. Looking forward to tomorrow's goals and hoping for another positive night.

Care packages

I've had some ask about where to send care packages for baby Alexander. If you are interested in sending one, the address is:
CHLA
4650 Sunset Blvd.
CTICU, 2 East
Mailstop #150
Los Angeles, CA 90027

Thank you for the hugs, hopes, and prayers! Keep them coming! :)

One step closer!

Alexander had a good night! His oxygen support was reduced and the nitrous gas was removed. For today, Alexander will be weened off one of his heart medications and have his chest tube removed. As for tomorrow, there are many changes planning to be made. His feeding will start again (hooray!!) and more of his medications will be weened off (double hooray!). We are one step closer to me holding my baby boy and another step closer to going home! I might not get the belated birthday gift of being able to hold him, but I'll take the progress he's made the past two days. He's such a strong boy and I remind him every second that he must listen to his mother! If he stays strong, then his mommy will! 

 

When daddy arrived this morning, Alexander was wide awake and very content with being swaddled!

Day 11...showing progress

After a very rough day yesterday, today has seemed to go much smoother. I'm hoping we are at the end of this bumpy road we have been on and will soon be on the smooth road to home! I was hoping to get the best birthday present ever today-holding my baby boy, but not so much. Maybe it will be a delayed birthday present..I can only hope! 

 Over night, Alexander did well with staying stable. He is back to trying to keep his blood pressure and oxygen levels maintained. Today, the goal for him is to continue to ween him off of his heart medication and provide him with lots of rest. Lots of rest means limited touching, something I don't like to hear but I know it is best for him.  Tomorrow the doctors hope to be able to remove his chest tub and continue with weening him off more of his medication. All we can do now is continue to hope and pray that each day stays positive, so that we can get closer to the main goal of going home!

Not quite over the hurdle yet...

Tough day today.

I'm pulling blogger duty tonight because Jessica wasn't really feeling up to reliving today's events. Alexander is doing OK right now, sleeping the night away with the help of some strong sedatives, but he had a really rocky day. We are hoping for an uneventful night, but the past has taught us that those expectations might not be the most realistic.

Today's plan of attack was to have his pacemaker installed late morning, and hopefully resume weening him from the respirator starting in the late afternoon or into the evening. He was scheduled to be the second surgery of the day, with the surgical team estimating that he would go in around 11:00ish. The doctors anticipated no significant setbacks to his recovery, and with luck Jessica would be able to hold him for the first time on Friday - her birthday.

Come 12:30 they finally took him from his room, it seems that the morning surgery ran a bit late. During the delay, Jessica and I could only watch the nurses prep the equipment, and wait for the inevitable. It seemed to take forever. Once they finally came and gathered him up, we followed down the hall to the threshold of the OR, then kissed him on the forehead before he was wheeled inside. We left and met with our moms and my brother, who had all come to help support us and see Alexander post-surgery. We were given a 2 hour estimate and a pager, to notify us when he was safe and sound back in his room.

After about 3 hours, the surgeon found us in the waiting area and sat to talk with us. An earlier X-ray had caused some concerns that the PA band (the compressive band on his pulmonary artery installed last Thursday and readjusted on Sunday) may have slipped and caused some blockage to one of his lungs. The surgeons evaluated the position, and were content that it was where it was supposed to be. The pacemaker installation went as planned and they closed him up without any issues. He was being transported back to his room and we should be able to see him in about 45 minutes.

45 minutes passed, and we received no word from the CTICU staff. We decided to check in on him ourselves to get a status update. Once inside, we found that his room was abuzz with doctors, nurses, x-ray and ultrasound technicians, all working furiously around our pale little man. The bedside nurse quickly told us that Alexander's blood pressure and oxygen saturation had crashed during transport back from the OR. We were asked to wait in the waiting area so they could work. I managed a glance at his vitals, and they were not good. Oxygen saturation was in the low 50%s, meaning that the blood supplying oxygen to his body and brain had only 50% of the oxygen wold normally have. The alarms are set for around 65%, so he was way below where he should have been.

We went back to the waiting room to let everyone work without our interference. Another 45 minutes later (as if an eternity could last only 45 minutes), a pair of cardiologists came in to talk to us. Their evaluation was that, as a reaction to the stress of surgery, Alexander's pulmonary artery has a tendency to constrict a bit, which cuts down on the oxygen his lungs receive - hence the drop in oxygen saturation. This behavior is consistent with what they observed after his first surgery, so they felt that they could handle the situation. We were invited to rejoin him in his room.

Once in the room, we were given the rundown by the floor attending doctor. Basically, he was back on a strong dose of Dopamine, a small dose of Epinephrine (the two heart drugs we celebrate weening off of only one day prior), as well as full respirator support. With all of that, he was barely maintaining minimum oxygen saturations, frequently dipping into the mid-50% region. They were pumping him full of fluids to help boost his blood pressure encourage oxygenation. Respiratory therapists were constantly tweaking his breathing machine, suctioning his lungs and readjusting his breathing tubes. Nurses were still working nonstop to address him constantly, tweak drug dosings, and check vital signs. He was also put onto a painkiller drip, as he appeared to be regaining some form of consciousness under the regular administration of painkillers and having to endure some (hopefully only very little) of the pain and discomfort of the surgery.

Now we are back into the balancing game we played before. Little Alexander's heart is requiring a lot of support to prop it up. His oxygenation saturation dips frequently, and his blood pressure varies from too high, to too little. The doctors and nurses are trying to balance his fluid input, renal function, and medical dosings to give him the support that he needs without over doing it. Right now they do not have a lot of room to operate, as Alexander's stats are on the very edge of where they should be. Most of what they are doing is monitoring and reacting, as any small adjustment can cause his stats to jump from one extreme to the next. They are rechecking his blood and medication hourly, and hopefully he settles out sometime though the night, allowing them to get a manageable grasp on the situation.

Jessica and I are camping out in his room with him tonight, since the last two nights like this (post surgery and post sternum closure) were very rough. We are not out of the woods yet, but we hope that we are getting there. For now, I expect a long and sleepless night, listening to the beeping of the pumps and monitoring devices.

 - Wes

9 Days Old & another hurdle to get over...

Update for today...Alexander is still improving! As of this afternoon, he is off all of his heart medication and they have changed his medication and pain killers to a lower level/type of medication. His respiratory support is being reduced: training his lungs and diaphragm to adjust to breathing on his own. The discussion of having a pace maker put in is looking to be more real and should be scheduled for either tomorrow or Friday. The doctors don't expect Alexander to have much of a set back and recovery should progress as it has been. His resperator will stay in for today and not be taken out until after surgery. Once it's been removed, I will FINALLY be able to hold him!

 We met with the electrophysiology case manager for information on what Alexander's life will look like once he has the pace maker. There was a lot of information given to us and not something I was ready to prepare myself for or accept. But it's a just another hurdle we must get over before taking our baby boy home. On a positive note, he FINALLY got some breast milk today! That made this mommy very happy!! I've been a pumping machine and to hear that my boy will finally get to eat (even if it is through a feeding tube), made me very happy! 

Praying for another positive day tomorrow...

Holy Smokes, a lot has happend!

Alexander arrived 8 days ago!! I can't believe that he is already 8 days old and how much occurred last week! Alexander Baxter Alleman arrived unexpectedly Monday night, February 11th at 10:52 pm. He weighed 5 lbs. 6 oz and was 16 inches long (so much for the doctor being correct about his weight).

As you know, he was expected to arrive on Tuesday, February 12th at 7:30 am, apparently he had his own agenda! I think back now and realize that my labor started on Sunday morning, when my contractions were 7 minutes apart first thing in the morning, however, they quickly became sporadic after the first hour, so I wasn't concerned. Then later on that day, the contractions started to become regular again, accompanied with back pain and pressure. Again, as soon as I became a little concerned, they became sporadic. Monday morning arrived, with my mom coming down to help me with some stuff around the house, did lab work at the Hollywood Presbyterian, and finished up all of my assignments for school. My contractions continued to occur but sporadic and no more back pain or pressure.

Wes and I went to Larsen's Steakhouse for dinner (decided to have one last dinner as a couple), had a fabulous dinner, and as we got the bill I heard a pop! and thought "oh crap, what was that!" I then asked the waiter where the restroom was, who proceeded to to show me where it was, and as I stood up I felt the gush of water and thought "oh crap!!!" As  I went to the restroom, freaking out and confirmed my water had just broke. I quickly and carefully walked out of the restaurant, saw Wes signing the bill, and stated "Wes we gotta go, my water just broke!" He quickly jumped up and we carefully and quickly ran out of the restaurant. We safely and quickly raced home so that I could change my pants, called my doula, my mom, and headed to Hollywood. On the way, we had to get gas of course (I planned on getting gas the following morning).

When we arrived at the hospital, I was quickly checked in and given the fetal heart rate monitor. When my OB arrived, I told her I was having contractions and my back hurt. She then informed me that I was 2 cm dilated and 35% effaced. My OB then told me that they were going ahead with an emergency c-section, instead of waiting 6-8 hours because I had just eaten, because his heart rate was dropping. He was delivered relatively healthy, needing to have some of the meconium pumped from his lungs. Thus far, it appears that they got it all and there were no issues. I was able to have face to face for a few seconds with Alexander.

Happy Birthday Alexander!

Before I knew it I was in recovery. Once I was able to feel my legs again, the doctors wheeled me into the NICU to see Alexander for several minutes before taking me to my postpardum room. After being in the room for an hour, I was informed that he would be transported to CHLA. The transport team brought him to my room for a few minutes prior to taking him to CHLA. I didn't get to see him for another 3 days.  However, my loving husband sent me pictures and daily updates of Alexander. He was making so much progress prior to surgery (grasping daddy's finger, not needing a ventilator, and using his pacifier). He did require a blood transfusion to infuse his system with oxygen carrying red blood cells. Since that time, he has gotten good color, good oxygen saturation of the blood and maintained a relatively good heart rate.

Snuggle Time with Daddy

A day or two prior to his scheduled surgery, he had an echocardiogram performed to see the details of his heart, as well as some chest x-rays, ultrasounds of his brain and kidneys, and an MRI of his brain. The heart echo confirmed an earlier diagnosis, that he has both major arteries (aorta and pulmonary) were formed on the right chamber, and were both well formed, meaning that reconstructive surgery would not be required on the aortic arch – which would be typical for a baby with HLHS.

February 14th soon arrived - my day to be discharged and Alexander's big day for surgery. I tried my hardest to get over to see him before he was taken in, but that didn't happen. Prior to be taken into surgery the surgeons decided that Alexander needed a compressive band attached to the pulmonary artery. Because both major arteries are attached to the same heart chamber, that single chamber must pump both arteries. The pulmonary artery pumps blood to the lungs to collect oxygen, and because it is a low pressure flow region, as opposed to the aorta which distributes oxygenated blood throughout the body, more blood would pump through the lungs than through the body (path of least resistance). This results in an oversaturation of blood in the lungs, while depriving the body of oxygenated blood. The compressive band reduced the flow capacity of the pulmonary artery and forces the blood to travel throughout the body.

Baby Alexander also has an Atrial Septal Defect and a Ventricle Septal Defect. The septal is the wall in the heart separating the left and right sides. In baby Alexander, these walls never formed correctly. Since he is operating as a single chamber heart, the decision was made to remove the remnant of the unformed atrial septal wall. This is because the blood circulation returns to Alexander’s heart on the respective left and right sides as normal, but the left hand flow travels through the hole in the atrial septum and down into the right chamber. To ensure that the blood can mix coming into the heart, and to ensure that as the muscle grows internal flow restrictions do not form, the surgeons decided to remove the remnant of the atrial septal wall.

Thursday was an exhausting and overly emotional day for Wes and I! I was in pain physically and emotionally because I couldn't be with my boy! To top it off, all of the information we were receiving from his doctors that his surgery didn't go as easy as they thought, which was even more upsetting.  Upon administration of anesthesia, Alexander’s heart rate and blood pressure fell. It did not get to a critical level, however restoration compressions were administered and supplementary medication was required. Additionally, he went into what is known as Heart Block. 

Heart Block is a condition that occurs in the electrical signaling of the heart. Normally, the upper and lower chambers work in a sequence to optimize the blood flow. First the upper chambers pump, then after a slight hesitation the lower chambers pump. An electrical signal is transmitted to the upper chamber, then down to the lower chamber to accomplish this. In Alexander, the signal somehow got lost between the upper and lower chambers, meaning that his atriums are pumping, but not his ventricles. Because of this, he is currently hooked into a pacemaker. It measures the signal at the atrium, and then transmits a signal to the ventricle when it needs to pump. He will have to remain on this pacemaker until his body recovers, or the cause of the problem is resolved. If it remains unresolved, he will have to have a permanent pacemaker installed. While he was recovering he was on substantial pain medication and blood clotting medicine to help him heal from the surgery. He is also on a pacemaker and breathing machine to help his systems function. 

Since yesterday, Alexander has been showing some improvements! Something his mommy and daddy very much needed, with tears of joy from mommy!  Yesterday, he kept his oxygen level and blood pressure in the positive, was taken off Nitrate, had his catheter and his drainage tube removed. Today, he has kept his levels in the positive area and is being weaned off some of his medication! One step closer to being able to hold him and eventually go home! :) 

However, he is still in heart block and the possibility of having to put in a pace maker permanently is being discussed and could happen as early as Thursday. We are hoping that the lower portion of his heart will start improving so that he won't need the pacemaker.

As of today, he is still doing very well! Some of his lines have been removed and he continues to be weaned off more of his medication. His oxygen and blood pressure levels are staying positive too! We got to change a few dirty diapers-something I didn't think I would be happy to do! But right now I'll take what I can get to be hands on with him! We hope tonight and tomorrow will be just as positive, if not better! I am finally feeling better and will be back to updating daily with pictures of our Superman and his progress!

additional information on HLHS

http://www.chop.edu/video/fhp-hlhs-video/hlhs-morgan-story.html?item=4&keyword=none#transcript

Last appointment at 38 weeks and 3 days

We had our last doctors appointment today! Alexander is estimated to weigh 7 pounds and 5 ounces! We will find out Tuesday how close of an estimate the doctor was! As I said, Tuesday we find out, which means he is still in a breech position! So, the plan for Tuesday is that I will be checking in at 5:30 am at Hollywood Presbyterian Hospital and the C-section is scheduled for 7:30 am. Once he is delivered, he will be taken to the NICU for a few hours to make sure he's doing okay. Wes will only be able to bring in one visitor at a time. While Alexander is in the NICU, I will be in recovery for 2-3 hours, with no visitors except Wes. From there, I will be moved to the postpartum room, where I can have as many visitors as I want! While I am being moved to my new room, Alex will be transported by ambulance to CHLA (which is next door to HP) and Wes will be with him. At CHLA, he will be taken to ICU until his scheduled surgery for February 14th. Wes will then be going back and forth, from Alexander to visiting me. Luckily there is a hallway that makes it easier to get between both hospitals and that I have loving, supportive family that will stay with me or Alex, when Wes can't be there! It is going to be a long day for all of us and we will try to keep everyone informed as much as possible! Keep us in your thoughts that the delivery goes well, that everything goes well for Alex, and that I have a speedy recovery so I can be discharged and see my boy before his big day!

doctors appointment at 37 weeks and 3 days

We had our second to last doctors appointment on Thursday and everything is looking good, except of course Alex is still breech! So, we are still scheduled for a c-section on February 12th! We got to meet the cardio surgeon, Dr. Starnes. He stated that Alex may still need to be put on bypass for the first surgery but that he won't know for sure until an echocardiogram is complete after he is born and when they go in for surgery...Praying he won't need to be put on bypass! We also found out that he will be scheduled for his first surgery on February 14th, Valentine's day. That means I need to be out of HP (Hollywood Presbyterian) and at CHLA (Children's Hospital of Los Angeles) by then. In case I hadn't mentioned it before, the recovery process is 2-3 days after a c-section. When Alex is born, he will be taken to the NICU at HP for a few hours and then transported to CHLA (right next door). I won't be able to see him at CHLA until I'm discharged. So a quick recovery is what I need! One more appointment left until the big day (unless he decides to come early)! Turn around Alexander!!!!