Home

Sorry it has taken me so long to post an update. Life has been crazy adjusting to our new normal and unpacking after being gone for 7 weeks...

Finally leaving the hospital

On Monday morning we got word from the attending in the step down unit that we would be discharged later that day. Max had been doing really well and had been taking enough milk by bottle that they were able to remove the NG tube. After a few extra tests and lots of paperwork we were finally discharged at the height of rush hour. Max wasn't very happy with the traffic and the first hour and a half of the drive was pretty rough. We decided to drive half way to San Luis Obispo and spend the night in a hotel. Then on Tuesday we made the final trek to Walnut Drive. Molly was anxiously waiting outside with my mom. She was so excited to see us and to finally see her brother outside the hospital. The last time she had seen him he was pretty sick and intubated so this was a nice change. She has already been the best big sister and a super helper to her mommy (very different than when Luke was born and she wasn't too happy to be sharing her mom).  Molly loves to hold him and to give him lots of germ filled kisses. Luke was napping when we got home and so he was super surprised to see us when he woke up. He had been talking about feeding his brother a bottle everyday before we got home so he helped for about 2 seconds and then went off to play Batman!

Max has been much happier at home. No more fluorescent lights, monitors beeping, kids crying, and people messing with him. He is sleeping better and crying less. We still give him Tylenol twice a day to help with incision discomfort.

On Thursday we headed up to CHOC for Max's first cardiology appointment. He had an ECHO, EKG, oxygen check and weight check. Things seems to be pretty stable. Dr. Doshi has her work cut out for her to keep Max's saturations up over the next year. As Max gets bigger his PA band will get tighter and his oxygen saturations will decrease. Dr Hanley (Max's surgeon) wants him to be 10kg or 22 lbs for his next surgery. Right now we are trying to figure how many extra calories Max needs in order to start gaining weight. Right now he is 8 lbs 6 oz (birth weight was 8lbs 11oz). Brad and I have never had a skinny baby so this is new territory for us. We also took Max to his first pediatrician appointment. Luke said to me before I took him "Are you going to the hospital? Please don't go back to the hospital." I guess that is his way of saying that he likes having his family back together!

And I have to give a shout out to my other half on Fathers Day weekend because he has truly been an amazing partner and daddy over the last month. Happy Father's Day to our Daddy Braddy!!

One step closer

Yesterday afternoon a bed finally opened in the step down unit so we packed Max up in a new crib and wheeled out of the CVICU. I sincerely thanked Dr. Asija and team for taking care of Max and being pivotal in his turn around last week. Each week a new attending takes over and I believe Dr. Asija was determined to get Max on the right cardiac path in the least invasive manners possible. She was the one who pushed for the atrial Septostomy in the cath lab when other doctors thought it wouldn't work.  We are thankful that these really smart people choose to work in such a stressful environment. The CVICU at Stanford is a beast and their job is to keep really sick kids alive. We hope to not be back in that place until Max's arterial switch surgery next year.

I finally get to wear clothes!

I

The third floor cardiac unit is a completely different world. We have a nurse but as parents we are expected to take care of Mighty Max. Brad and I give Max bottles of fortified milk (extra calorie breast milk), change his diapers, administer his meds, and take care of his NG tube. Whatever milk that Max doesn't take by bottle is put into his NG tube in his nose to ensure he gets full feedings without getting too tired. The good news is that Max for the most part has been doing a great job of taking bottles. We hope to take him home without the NG tube but we are totally ok if we need to, if that means we can go home sooner. Cardiac kids in general burn a lot of calories because their hearts have to work so much harder that they have trouble gaining weight. Many kids and babies we have met here have either NG tubes or the more permanent G tube. Once Max has his full repair in a year or so his heart should work much more efficiently and hopefully won't need any extra help with feeding.


Cardiac and pulmonary wise Max has been very stable. At times he has still been a little fussy (so much for being the chill third child!). We have been giving him Tylenol as needed but they don't think he is suffering from withdrawals because he doesn't show any other symptoms. The only thing keeping us here now is that Max just has to prove that he can gain weight. He gained 100 grams in the last 24 hours so we are on the right path. Hopefully sometime this week we finally will get to go home!

The goals was to make it home by Luke's third birthday tomorrow (June 13th). Obviously that isn't going to happen so we will celebrate when we finally get home. It's been a LONG 23 days in the hospital and we are ready to see our kids and Walnut Dr. again!

Withdrawal

This mama is pretty tired tonight but I know many of you are waiting for an update. Things are still going really well for mighty Max. He was supposed to be moved to the step down cardiac unit today but there are no open beds so he is still in the ICU. Yesterday we were dealing with a collapsed upper right lung and lots of junk in his lungs. Today Max's lungs are much better and they have been weaning him off oxygen. Hopefully after tonight they will have him totally off any support. OT and PT stopped by to see Max today and began oral therapy to get him to take a bottle. We are up to 40 cc a feeding and once he can sustain 60cc per feeding we can ditch the NG feeding tube. The only bad news to report is that Max has been pretty fussy all day. His nurse today nick named him "Mad Max" because he was at times inconsolable. The team thinks he is suffering from withdrawals so they started giving him small doses of Ativan and will begin a taper. Brad and I spent pretty much the whole day holding, rocking, and talking to him. After so many days of not being able to love on him and not being able to hear him cry it is a nice change of pace to see him act like a newborn even if he is an extra cranky newborn.

I'm still pretty cute even when I'm crying..

Please say an extra  prayer for all the kids in the CVICU. It is one scary place. Brad and I have now seen two kids code (heart stop) and have seen surgical teams crack open chests at the bed side because the kids aren't stable enough to get to the OR. Please give the healthy little ones in your life a little extra snuggle. We are happy to have our little guy on the road to recovery but have met so many wonderful heart families that won't be heading home anytime soon. And tonight we count our blessings.

And the forward momentum continues

Nothing but good news to report from Palo Alto. After six days straight of bad news we are finally on a positive trajectory.

After rounds this morning, Max was downgraded from a CPAP to a nasal canula (less oxygen and breathing assistance). With each change Max's CVICU team makes, our little fighter continues to have good numbers and good oxygen saturations. He is a much happier baby to finally have the tube out of his throat and all that other crap off of his face. And his mom and dad are so happy to see his cute little face and eyes again! He is off all of his medications except for his diuretic (Lasix) and an occasional dose of morphine (which will be discontinued now that his chest tube is out). They have steadily been increasing his breast milk feeds through his NG tube (feeding tube in his nose). This afternoon his nurse practioner removed his RA line out of his heart and his chest tube that was draining excess fluid. The good news is once he is stable from the RA line removal we can hold him. It has been a long 8 days and I can't wait to snuggle that little boy again!

Now the next step is feeding from a bottle and to start gaining some weight. Our little guy has had very little in his tummy over the last 8 days and has lost well over a pound. We are hoping he follows in his brother and sisters footsteps and becomes a super chubby baby.

Thanks for your messages and prayers. In the really dark days it was one of the few things that kept Brad and I sane. The CVICU is a scary place but we are thankful for everyone that is brave enough to work there. We are hoping and praying that things keep moving in a positive direction and that in the next few days that Max will either be transferred to a step down cardiac unit or transferred back to the NICU. Onward and upward! MAXIMUS MAXIMUS MAXIMUS!!!

Happy tears

Today for the first time since Max was born I cried happy tears. After crying multiple times a day when everything was going wrong it was a nice change to cry when something finally was going right.

Yesterday around 3PM Max was wheeled into the Catheterization lab. The plan was to  directly measure blood flow and pressure differentials in different places of his heart. The doctors needed to know exactly why Max's oxygen saturations were so  low (high 60s-70s). The good news is they discovered the PA band was not the problem. The bad news is they discovered the problem had to do with Max's anatomy of his great vessels. Basically the PA band directed excessive blood flow away from the lungs which is a good thing but it also caused the blue blood (deoxygenated blood) to preferentially go out the aorta. The cath Cardiologist, Dr. Peng, our attending in the CVICU, Dr. Ritu Asija, and Max's surgeon, Dr. Frank Hanley, all discussed the options and made a last ditch effort to try and open up Max's atrial septal defect. The hope was that by making the opening bigger among the top two chambers of the heart that this would allow for more red and blue blood to mix so that blood going out the aorta would become more red or oxygen saturated. Max was gone in the cath lab for almost four hours. When Dr. Peng came out of the procedure she stated to us that everything went smoothly but the ASD balloon procedure did not seem to help his oxygen saturations. 

Brad and I made a conscious  decision to stay positive as the alternatives if this didn't work were bleak. I prayed and went to bed anxious but optimistic. When we walked into the CVICU this morning we ran into  one of my favorite doctors here, Dr. Loren Sacks. Dr. Sacks had been with Max for the entire night shift  and informed Brad and I that Max's oxygen levels were significantly higher and it seemed to him that the ASD procedure is what he needed. Both Brad and I broke down in happy tears. This was the  first time in the CVICU that we have received positive news about Max. 

The team made the decision to extubate little Max (remove his breathing tube) around 2:30PM today. They made some significant changes from the last time this was attempted. They gave him Ativan and Dex (not sure what this is short for) to keep him calm and steroid treatments to help with upper airway restriction. We were also blessed with a very attentive nurse and attentive fellow that were determined to get him through this time.  Three hours later he is still doing great. And his oxygen saturations actually went higher after extubation (low 90s). Max is currently at 50% oxygen on the CPAP and they are continually weaning him. The hope is to have him on room air (no oxygen) sometime soon. 

Although Max is still in the CVICU we hope that he is now one step closer to coming home. Praise God!

Birthday blessings

Saturday was my 34th birthday and my original wish for my birthday was to get to hold Max again. Unfortunately that wish didn't come true but I did get to spend time with all three of my kids which came in a close second. My mom bravely flew up with Molly and Luke for the weekend after we were informed that we would not be heading home with Max anytime soon. This weekend has been such a blessing and a much needed distraction. It was wonderful to step outside the walls of the hospital and to just be mom and dad for awhile. Molly seemed to have missed us a lot and has been showering us with lots of snuggles and kisses. Luke on the other hand seems to have had the opposite reaction and wants nothing to do with us after leaving  him for the last two weeks. As hard it is on the whole family I know someday he will understand and realize why mom and dad disappeared for awhile.


As for Max things have been up and down. He has good hours and bad hours. The doctors just can't seem to figure out Max's heart and oxygen saturation levels. The plan is to go into the catheterization lab on either Monday or Tuesday so they can directly measure blood flow and pressure differentials in different parts of his heart. Although this is not a major surgery it still has risks and we hope that this procedure will give the doctors the answers they have been looking for. There has also been talk of doing a balloon procedure during the catheterization pocedure to create a larger atrial septum defect (ASD or hole between the top two chambers of the heart). The doctors hope that a larger ASD will allow for more blue (deoxygenated)  and red (oxygenated) blood to mix so that more oxygenated blood perfuses to the rest of his body.

We hope and pray that the cath procedure gives the doctors answers and allows Max to move forward with his recovery. Once he is stabilized then they can try to extubate again. We will probably be in the hospital at least another week if not longer. I'm not going to lie that sometimes I just want to pick Max up and run out of here.

I have also contacted Dr. Emani (cardio thoracic surgeon) at Boston Children's for his opinion on Max's long term surgical plan. At this point in time we have to get Max stable here at Stanford but Brad and I want to make sure multiple surgeons are on the same page about what is best for Max. Monday we will begin the process of getting the teams at Boston all of the relevant studies of Max's heart.

Please keep mighty Max in your prayers. We hope to have more answers and a better plan to get Max out of here over the next couple of days. We are hanging in there... Some days just barely... But we are trying to keep focused on being Max's advocates and getting him healthy and home!

And the roller coaster continues...

I don't even know what to say other than today has been an emotionally draining day. We started our day today in a good place. All day yesterday and into this morning Max's numbers (Heart Rate, Blood Pressure, and Oxygen Saturation) had all stabilized. The cardiology team decided he was ready to be extubated so they slowly began weaning him off sedation (Fentanyl) and the ventilator. The team extubated Max around 11:30 and everything was going well. His oxygen levels actually increased and we thought he was in a good place. Around 2:30 I was visiting with Max when suddenly he became very agitated, began crying out in pain, arching his back, and had difficulty breathing. Watching him in so much pain and discomfort was heartbreaking as his mom. Max proceeded to D-sat several times (oxygen levels dropping dangerously low). I couldn't handle it and left the ICU a blubbering mess. Thankfully I have met some more seasoned heart moms during our stay and today they were a lifesaver. They were there to talk me through things and let me know that they have all been there and things do get better. Shortly after the cardiology team decided to reintubate Max, gave him a muscle relaxer, and gave him a good dose of Fentanyl. The good news is Max is much more comfortable now, but the bad news is we are back to square one. They are currently trying to figure out Max's airway issues (swelling, excess mucus) along with his desaturation issues and will leave him intubated until they figure everything out.

Not only have we had the excitement of Max's extubation and subsequent reintubation we were also told this morning that there is a possibility of doing another surgery called a shunt procedure to help increase Max's oxygen saturation levels. There are still lots of questions... is the Pulmonary band too tight, is there a problem with Max's lungs that is causing reduced oxygen levels, or is the blue/desaturated blood streaming to his aorta because of the unique anatomy of his great vessels. At this point we have more questions than answers and we just have to wait and see where Max's oxygen saturations end up once he is extubated and on room air.

For the first time since we have been at Stanford Brad and I have lost some faith in our team up here. I know they know what they are doing but things just seem to be all over the place. We have expressed our concerns about just doing another surgery or two to try and figure things out. I have reached out to Boston Childrens to get a second opinion about Max's surgical plan. The last thing Brad and I want is to put Max through more surgeries than he needs. We know Dr. Hanley is a great surgeon but we need to make sure he is the right surgeon for Max.

I have decided to take a little reprieve from the hospital tonight and try to regain my composure. It's been a hard few days but the silver lining is Luke and Molly are headed up here to visit tomorrow. It's been two weeks since we have last seen them and it will be a nice distraction to just be Mommy and Daddy for a few days.

Please keep praying for Max. Please pray that he stabilizes and is extubated more smoothly sometime soon and that the doctors are able to find some answers. Thanks for all of the kind words and prayers it really does help!

Rough Day

I wish I had better news to report this morning but little Max is struggling. Brad and I arrived at the hospital yesterday morning expecting to see Max a little more awake and a little better off then right after his surgery. Instead we were informed that he had a rough night. Over night on Tuesday Max's right lung partially collapsed and his pulmonary edema worsened. As a result of these two things his blood gas oxygen levels (the oxygen levels in his body) were very low. They began aggressively treating his lung problems with a respiratory therapist. They were able to get his right lung inflated again and they temporarily got his oxygen levels up. Unfortunately throughout the day they continued to drop. The doctors have been trying many different approaches to get his oxygen levels back up: they give little Max a blood transfusion to give him more red blood cells to increase his oxygen carrying capacity, they bumped up his oxygen levels on his ventilator (he's still 100% reliant on his ventilator), they increased his diuretic to get more fluid out of his lungs, they gave him a vasodilator to dilate the blood vessels in his lungs, they put him on a nitrous machine (not quite sure what that is), and they continued aggressive breathing treatments with the respiratory therapist.

If all of these attempts fail to increase his oxygen levels then there is a possibility that the surgeon put the pulmonary band on too tight (reducing his oxygen levels) and that he will have to go back into surgery. Brad and I are scared and really need Max to turn a corner today. Please keep little Max in your prayers and I hope and pray that I can give more positive updates later today...