Post-op day #18...home bound!!!

December 30th: We're going home today! The cardiologist is still tweaking her medication regimen a little bit, but we will see him so frequently in cardiology clinic, that he is comfortable sending us home and continuing to work on her dosing. Em's blood pressures were still low overnight, so they are taking her off of the Captopril and we will see how she's doing next Tuesday at our cardio appointment. I have lots to do today...packing up our home away from home, and making some last minute arrangements so everything is ready at our real home! Can't wait to add our evening update...this should be a wonderful day!

Evening update: What a busy, but perfect day! Emmy finally got her IV and pacing wires out and got disconnected from all of the monitors...thank goodness we're done with that! She has been through more in her first 3 weeks than most of us will endure in a whole lifetime, and she's tolerated it all so well. She is really a very happy baby...only cries over dirty diapers!

We got home around 3:30pm and Brinley was waiting anxiously. She is infatuated with her little sister, but I'm pretty sure she thinks Emmy is a very life-like baby doll. She wants to hold her, pick her up, swing her, pat her, kiss and hug her...and the list goes on. She doesn't like the feeding tube or oxygen in Emmy's nose and has tried to remove both multiple times. We all have a lot of adjusting to do, but we're looking forward to it:) Here are some fun pics from our day...

LOOK, no tubes, wires, or monitors...I'm free!!!

But only for a minute, Mommy was just getting ready
to put the feeding tube back in:(

Emmy in her car seat, ready to leave the hospital!

Getting up close and personal...Brinley was right 

in Emmy's face within 30 seconds of us walking in the door!

 Brin holding Emmy and giving her hugs:)

Emmy looks horrified...poor baby!

Brin will learn to be a wonderful big sister:)

Post-op day #17...preparing for dicharge home:)

December 29th: Emmy had a good night...no more arrhythmias. The cardiologist is happy with her response to the Amiodarone. Her blood pressures continue to run on the low side, so her Captopril is being decreased again. Her Methadone is also being weaned to once a day and she will be off of that in 2 days. They plan to remove the oxygen again today and see how she responds, and we will also re-attempt oral feeding to see if she is any more interested than she was last week. Finally, she will have her hearing screening and car seat study in preparation for discharge home TOMORROW:) I can't believe I'm saying that...now she just has to cooperate with the plan!

Evening update: We had a grrrrreat day! Emmy did everything she was supposed to without any arguments:) She had no arrhythmia issues, she's tolerating her medication changes well, we were able to remove her oxygen while she was awake, and she ate a small amount from a bottle without any choking or vomiting! She also passed her hearing test and her car seat study. She's done absolutely amazing today...I guess she's finally agreeing to come home! Tomorrow should be our big day- I am so excited to bring little Emmy home and have our whole family together:)

Post-op day #16...adjusting meds

December 28th: We ran into another glitch in our plan last night. Around 4am, Emmy started having further irregularities in her heartbeat (probably related to the Amiodarone infusion) so they stopped the medication, and obtained an EKG. Dr Puntel, one of her cardiologists, says we should proceed with the oral Amiodarone and monitor her to see if she tolerates the medication better in the smaller oral dose.

Otherwise, the plan for the day includes discontinuing her Sildenafil and lowering the dose of another of her cardiac meds as she had some pretty low blood pressures overnight. They will attempt to wean the oxygen to room air again...I am not too hopeful about that since we have tried and failed several times and now have home O2 tanks and a condenser sitting in our room. It never hurts to try though!

Evening update: Today pretty much went according to plan. Emmy started the oral Amiodarone, got a lower dose of the Captopril, and was taken off of the Sildenafil. Her blood pressures remain on the low side so we'll see what the cardiologist says tomorrow. They did not attempt to turn her oxygen off today so we will work on that tomorrow as well. She is tolerating her continuous feeds well and has only had a couple episodes of normal baby spit up today. I definitely feel like we get more good news than bad each day now...we're finally on the right track and transitioning toward home:)

Post-op day #15...talking about home!

December 27th: Emmy and I slept through rounds! The cardiologist and the nurse updated me on the plan when we woke up. Emmy's chest x-ray looked worse again this morning. It shows that she still has fluid on the lungs. The cardiologist explained that this could be a combination of the medication she's taking and the fact that she is still on supplemental oxygen. One of the medications she is on, Sildenafil, causes decreased cardiac afterload, which means it decreases the force that the heart has to pump against. This causes some back up of blood and with the oxygen which causes vasodilation in the lungs, it is possible for the fluid to move into the lungs. The cardiologist ordered and ECHO to determine the necessity of the Sildenafil and they will also keep trying to get her off the oxygen.

The cardiology nurse practitioner who assists with discharge planning also came by this morning. She explained that they would prefer Emmy to go home with a NG tube rather than an ND so the nurse will pull the feeding tube back into the stomach and see if Emmy tolerates her feeds. The NP is also working on making all of the necessary arrangements for our discharge home...hopefully within the next couple days! The home health company will be delivering her oxygen, pulse-oximeter, feeding pump, and supplies today. Then I will "nest" for the next day or 2. Nesting refers to a time period when the parent cares for the child independently to demonstrate their competence using the equipment and managing the child's care at home.

Evening update: I don't think Emersyn ever wants to leave the hospital! We were doing so good, then this evening she started having the ectopic atrial tachycardia again, so now she is getting a continuous IV infusion of Amiodarone to help correct the arrhythmia. Hopefully, she will only be on the IV drip for a day or 2 then they'll transition her to an oral version to go home on. Either way, this will delay our discharge a few more days...Emmy's such a little stinker, definitely not a cooperative child so far!

Otherwise our day went according to plan. The Methadone was weaned, and the home health company delivered all of her equipment for home. The feeding tube was pulled back to an NG and Emmy tolerated the feeds running into her stomach without a problem. She is starting to show some signs of oral readiness too- she has been smacking her lips and sucking on her fingers, so over the next couple days I will try oral feeds again with the help of the speech therapist. Overall, we are still taking forward strides, it's just going to take a little longer to get to our goal of going home. I'm keeping my fingers crossed that we will be watching Dick Clark's Rockin New Years Eve from the comfort of our own couch!

Post-op day #14...baby steps will get us home!

December 26th: It doesn't seem like we'll have too many changes today. In morning rounds, the team discussed weaning her oxygen to room air and increasing one of her cardiac meds. They mentioned pulling her feeding tube back from her small intestine to her stomach, but since she has only been tolerating her feeding well for one day, her surgeon would prefer to give her another day of good nutrition before making any other changes. So the plan for today is just to give her food and let her grow!

Evening update: It's been a pretty uneventful day...for the most part, just feeding and growing:) Some minimal changes were made to Em's medication regimen and she tolerated those fine. They tried discontinuing her oxygen again and Emmy reacted the same as yesterday- she wasn't having any part of it! It's amazing how much difference 0.1L of oxygen can make for a baby. With her oxygen, Emmy's sats are 90-100% but when they take it off, she drops to 60-70%. Looks like we'll be going home with oxygen too...that's fine with me, whatever gets us out the door!

Post-op day #13...Christmas at PCH

December 25th: It's Emmy's first Christmas...not the ideal way to spend it, but we'll make do! Our family will have a busy day trading shifts here at the hospital so that Emmy never has to be alone, and we each get some time away to spend with the family. My mom came in around 6am so that I could go home and open presents with Brinley. She's too young to understand what the holiday is all about, but she sure caught on fast that Santa was coming and bringing her TOYS!

I got back to the hospital around 9:30- just in time for Santa and Mrs Claus to come visit! We got our picture taken together and they gave Em a stuffed puppy dog. Her warmer is starting to get a little overcrowded with all of the animal friends that have moved in...it's OK though because she's rarely in there anyways!

I guess I should update everyone the medical side of things too! Emmy continued to have some issues with irregular heart rates and tachycardia last night and in rounds this morning, the team mentioned that one possible cause is the PICC line. The tip of the PICC sits in her heart, and could be irritating the SA node resulting in cardiac arrhythmia. Because of that, the cardiologist wants the PICC line removed. Other than that, the plan for the day includes weaning her oxygen and Methadone.

Evening update: Emmy's PICC line was removed this afternoon, so now we're down to just a peripheral IV and all of her medications are being given through her feeding tube...a good indication that we're getting close to going home! The nurse turned off the oxygen briefly this evening, but Emmy's sats quickly dropped into the 60's and she had to turn it back on. The methadone was also weaned from 3 times a day to 2, and she seems to be tolerating that well.

It's been a very busy day...not so much for Emmy, as for the rest of us! I know it's difficult on everyone running back and forth from the hospital, but for the first time since she was born I got to spend several hours outside hospital walls today and it was a much needed change of scenery! I'm so thankful to my mom and Bryan for making that happen:) Of coarse it would have been better if we could have all been together. We look forward to that day coming soon and we plan to have a pseudo-Christmas celebration when Emmy can come home and join in the festivities!

All snuggled up in her special Christmas blankies:)

Post-op day #12...Merry Christmas Eve!!!

December 24th: I had really hoped to be home for the holidays, but clearly that's not going to happen so we're making the most of it. We have Christmas music playing on the I-pod and the little Christmas tree in Emmy's room is lit day and night...we're doing our best to be festive!

Emmy reached her goal feeding rate last night so the TPN and lipids were discontinued. We're down to just a couple of IV infusions now- heparin for the blood clot and Milrinone for her blood pressure and renal perfusion. The Milrinone should be discontinued today, and the heparin in a couple days...then she will be IV free! Her chest tube drained very little overnight, so they plan to remove it later today. Other plans for the day include advancing her feeding rate a little more since she has less fluid coming in intravenously and weaning her off of the oxygen. Tubes and lines are disappearing left and right...we're so happy to see them go!!!

Evening update: Another productive day here in room 5112 at PCH. Emmy's chest tube was removed and after some deep suctioning this morning, she is breathing much easier. Her feeding continued through the ND tube and she tolerated it much better today. She still had a couple bouts of emesis but much less than yesterday. The Milrinone was discontinued but she wasn't able to have the oxygen completely turned off...that will be something to keep working on tomorrow!

Emmy did have several episodes of cardiac arrhythmia today, but the cardiologists and ICU intensivists have told us that the cause is most likely benign. One minute she will be in a normal sinus rhythm and the next her heart rate has jumped into the 170s and she is skipping beats and having premature atrial contractions. She had 2 EKGs today that were sent to her cardiologist's office, but both showed sinus tachycardia with an occasional cardiac pause...the doctors say she is probably going into a rhythm called ectopic atrial tachycardia but there is no need for concern at this point. She was given a one time dose of a cardiac medication, Amiodarone, to see if it would resolve the issue but there hasn't seemed to be any change yet.

We're looking forward to a very Merry Christmas despite being stuck in the hospital. We continue to have daily struggles, but we certainly have many blessings to be thankful for! We're just settling in for a long winter's nap...hoping to wake up to the sound of jingle bells and hoof steps:)

Post-op day #11...ups and downs

December 23rd: Emmy continued to vomit with her NG feeds throughout the night so the feeding plan has changed slightly this morning. The team feels she will tolerate the feeds better if the tube is advanced into her duodenum again and her stomach has more time to rest. Her feeds are also being changed from boluses every 3hrs to a continuous drip. They will continue to increase the volume every 2hrs until they reach her goal feeding rate of 18cc/hr.

Now for the not so good news...Emmy's chest x-ray looks worse again this morning. Her right side seems to be collecting fluid again and she is having more difficulty breathing. The plan is to resume the EZ-pap treatment every 4hrs as needed and see how tomorrow's chest x-ray looks. They may try giving her another diuretic to help flush out more fluid, but her doctors have differing opinions on that approach, so for now we will just wait and see how she does.

Evening update: Emmy definitely tolerated the ND feeds better, but she is still vomiting several times a day. The emesis is now just bilious secretions since there is no milk going into her stomach. I'm sure that's not comfortable, but at least she is retaining all of the calories she takes in. Proper nutrition is really important at this stage of her recovery to ensure optimal healing.

Unfortunately, I haven't seen much improvement in her respiratory status. She still seems to be working really hard. The respiratory therapists tell me she sounds like she has better air movement after an EZ-pap treatment, but I can't see a difference. I am nervous that tomorrow's chest x-ray will be worse and I'm disgusted at the thought of her chest tube going back in. The physician caring for her tonight has decided to give the additional diuretic in the hope that it will help her clear some of the fluid off the lung. I'm saying lots of prayers then we'll snuggle in for the night and wait to see what tomorrow brings.

Post-op day #10...making progress

December 22nd: It sounds like Emmy will have a busy day today. The drainage from her right chest tube has slowed enough that it can be removed...yeaaaa!!! The final report from the ultrasound yesterday showed that she has a thrombus (or clot) at the end of her central line so they are starting a heparin drip to dissolve it. Dr Nigro ordered a repeat ECHO to check the pressure in her right ventricle to determine if the medication they added a couple days ago has been effective. As far as her feeds go, the physician agreed that she would benefit from speech and lactation consults. He wants to continue to advance her NG feeds despite her intermittent bouts of emesis, and they plan to start her on Prevacid in case the GI issues are partially related to reflux. Busy, busy, busy- fine with me as long as we keep moving forward!

Evening update: We accomplished all of our goals today. The right chest tube was removed so now she just has the one on her left side which is still draining significant amounts of fluid. The ECHO showed that her pressure in the right ventricle was improved but they decided to start her on another cardiac medication to further decrease her right ventricle pressure and improve heart contractility. The heparin drip was started to dissolve the clot at the end of the PICC and prevent it from dislodging and moving further into the heart.

We also made some progress regarding feeding today. Both the speech therapist and the lactation consultant came to see us and offered some great advice on starting feeds at Emmy's pace rather than pushing her to eat before she's ready. For now, we will continue with exclusive tube feeding and transition to oral feeds as she shows more interest. She's continued to have episodes of emesis with her NG feeds but they are advancing her feeds anyhow. The doctor feels she should be able to tolerate full enteral feeds and come off the TPN and lipids. The plan is to see how she does through the night and re-address her feeds in the morning.

I am looking forward to another night of snuggling in the chair with my sweet girl. I may be creating a monster by allowing her to sleep with me every night, but for now I don't care...she's spent way to much time laying in that warmer!!!

Post-op day #9...Emmy is finally stable!

December 21st: Emersyn has shown huge improvements overnight. Her respiratory status is now stable and the threat of re-intubation seems to have past:) Her lungs appeared much clearer on this morning's chest x-ray and the plan for the day is to wean her to low flow oxygen via nasal cannula, and to start oral feeds. Her TPN and lipids will be weaned as the feedings increase...hopefully, within a couple days she will be on full feeds and the IV nutrition can be discontinued. We're definitely moving in the right direction now!

Evening update: Emmy has continued to show progress as far as her respiratory status and she was weaned to a regular nasal cannula today. Her oxygen requirement is down to 2L and she is doing well. Dr Nigro remains concerned about the amount of drainage coming from the chest tubes, so he ordered an ultrasound of her upper body to rule out a venous blockage- the results of that study are still pending.

We started bottle feeding today but she is struggling with coordinating the suck, swallow, breathe pattern. Her suck reflex is very weak and she rarely even attempts to feed from the bottle. When she does suck from the nipple, she immediately chokes and vomits. The nurse told me that this type of feeding difficulty is very common for infants post open heart surgery. She said that it takes quite a while to re-train them to effectively feed and often they go home with NG tubes. For now, her feeds are mainly going through the NG and I plan to request speech and lactation consults tomorrow so that I can learn how to best help her to resolve this issue.

On a more positive note, Emmy and I are getting to cuddle more now, and we love sleeping together in the recliner chair...we are finally getting some real mommy-baby time and couldn't be happier about that!

Post-op day #8...respiratory struggles continue

December 20th: Emmy had more respiratory struggles overnight. In the early morning, the doctor decided to start her on C-pap to see if continuous therapy would improve her lung expansion. Emersyn fought the C-pap the entire time, her respiratory rate went up into the 120s and her retractions worsened from the stress. She didn't stay on the machine long before they decided to discontinue it and put her back on the EZ-pap every 2hrs. Dr Nigro came just before morning rounds and ordered another ECHO to check heart function. The ECHO showed that she was having increased pressure in her right ventricle so she was started on a new medication to decrease that pressure.

Emmy's daily chest x-ray showed the pleural effusion on the right side had worsened overnight so another chest ultrasound was ordered to get a more accurate picture of fluid volume and location. The doctor felt that it was a significant amount and notified me that another chest tube was necessary to drain it. I couldn't believe it...she just seemed to keep getting worse and I was getting very disheartened.

Evening update: I think we've turned a corner (knock on wood)! The second chest tube may have been exactly what she needed to clear the fluid in the lungs and allow her to finally make some headway as far as her respiratory status. Her chest tubes have drained a total of almost 300cc off her lungs. Poor baby probably felt like she was drowning before they were placed...no wonder she was having respiratory distress! She seems much more comfortable now- her respiratory rate has slowed and she has definitely had a drastic decrease in her work of breathing. I feel like we will finally be able to make some forward strides now that the source of her respiratory issues has been diagnosed and appropriately treated. I'm feeling very thankful tonight for this forward progress:)

Post-op day #7...1 step forward and 2 steps back

December 19th: Emmy continued to struggle to breathe throughout the night. Her labs are getting worse, indicating that her respiratory status is deteriorating. She will most likely be able to tolerate the increased work of breathing for a short period of time, but it needs to be corrected sooner than later to avoid re-intubation. The EZ-pap respiratory treatment has increased from every 4hrs to every 2hrs and she seems to be tolerating it well, but has shown no significant improvement from it thus far.

Her daily chest x-ray has gotten progressively worse and after a chest ultrasound this morning, the medical team decided she needs a chest tube for drainage of the fluid accumulation. They are placing the tube on the left side where they see the largest pocket. Hopefully, with the fluid drained, she will be able to breathe easier and we will move away from the threat of re-intubation. They are also starting her on Methadone this morning to help her wean off of the narcotics. I am hopeful that this will make her more comfortable and relax her so that she can breathe more deeply.

Evening update: Today was such a stressful day. I just feel so helpless...it breaks my heart to see Emmy struggle every step of the way. The chest tube is draining well, but I haven't seen any improvement in her work of breathing yet. She still has a lot of fluid in her tissues that needs to drain off and that process is slowing down which is frustrating since her improvement seems to be contingent upon that. I get mixed messages from the medical team, some of them continue to tell me she is doing well and recovering as expected, while others share my frustration and say these patients typically make bigger strides sooner.

I do feel that the physicians and nurses listen to my concerns and tailor her care around my requests when possible. I am thankful for their consideration and validation of my role in her recovery. I just keep waiting for the day that she will turn the corner and take off...I expect everyday to be that day, and everyday I'm disappointed. I suppose I would be less discouraged if I changed my way of thinking, but it's natural for a mother to hope for the best for her children. So I will keep hoping and possibly keep being disappointed, but it's better than the alternative of losing that hope.

Post-op day #6...today is the day!

December 18th: Well according to the medical team during rounds, today is the day! Big plans for my Emmy girl...the breathing tube is coming out, her continuous drip of pain medicine is being turned off, and she is getting rid of her foley catheter and the central line in her neck. Now the not so good news: her chest x-ray shows quite a bit of excess fluid in the lungs and there is talk of placing chest tubes to drain it. Definitely not what I wanted to hear...we're supposed to be getting rid of lines, not adding new ones! They've ordered another type of chest x-ray that will allow them to more accurately visualize where the fluid is, and a final decision will be made based on that study.

Evening update: We've come so far today! The ET tube, foley, and one of the central lines were removed. She is struggling a little with breathing on her own, and she is now getting a respiratory treatment called EZ-pap, to try to help her inflate her lungs more fully. Her labs show that her pH is high and the doctors say that some of her breathing issues may be the result of a metabolic process taking place in her body from all the diuretics. They changed her diuretic medication and are trying to resolve the issues metabolically before they move to more aggressive respiratory treatments. Worst case scenario, she would have to be re-intubated if her labs and respiratory status don't improve over the next 24hrs. The chest x-ray showed that the fluid is in the tissue surrounding her lungs, not in the lungs themselves so she will just need more time to mobilize that fluid and a chest tube should not be necessary...whew!

A couple other issues arose throughout the day. Emmy had to have a new peripheral IV placed because her medications are not compatible with one another so they can't all be administered through the PICC line in her arm. The continuous drip of pain medicine was turned off and she's been much more irritable today. They tell me that she's not in pain from the surgery, and that she's probably just worked up from her respiratory instability and the resulting shifts in her blood composition. The breathing tube was in for several days and most likely caused some irritation to her throat, so that may also be a contributing factor. In addition, the doctors have discussed with me the possibility that she is withdrawing from the pain medication. She was on the Fentanyl drip for 6 days and may have built up some dependence to it. The nurses are now doing abstinence scoring on her every 4 hrs and based on those results, they will decide tomorrow whether or not to start methadone to help wean her off the narcotics. Such a roller-coaster ride we're on...2 steps forward and 1 step back each day! It is very easy to get caught up in the daily struggles and forget how far she's come in just one week...she really is a remarkable little girl!

Post-op day #6 with the breathing tube finally out,

still swollen but making huge improvements!

Post-op day #5...you guessed it...weaning the ventilator

December 17th: Today the plan is to continue weaning the ventilator and hopefully remove the endotracheal tube :) Happy, happy day...I can't wait to hold my baby again! They also hope to wean her off of her Milrinone, which is the last of her cardiac meds. By the end of the day, we hope to be down to just a couple IV meds- TPN and lipids for nutrition and lasix to continue her diuresis. They also plan to change her pain medication to a PRN, or as needed medicine, instead of a continuous drip...each medicine they discontinue is a small win for Emmy, and a step closer to home!

Evening update: All did not go as planned and I'm feeling very defeated today. Emmy still has too much excess fluid on the lungs to be able to tolerate being off the ventilator, so obviously she could not be extubated. She did get an additional diuretic to increase her urine output, so hopefully by tomorrow, enough fluid will have drained off that she can finally have the breathing tube removed. I feel like we have the same goals everyday but are never able to accomplish them and it's very frustrating.

On a more positive note, the Milrinone was discontinued today and the Fentanyl drip was weaned down. The pain medicine wasn't turned completely off because she is still intubated which undoubtedly causes some discomfort. For now I'm just hoping that tomorrow will be a more productive day.

Post-op day #4...weaning the ventilator...again

December 16th: Our goals for today are to re-attempt to wean the vent settings, to continue diuresis, and to wean her Epinephrine- another cardiac medication. I know this seems like a repeat of yesterday's post...it feels kinda like the movie Groundhog Day! Hopefully today will be more successful. Emersyn was able to drop quite a bit of fluid in the last 24hrs, her weight is down almost a whole pound...but she still has a long way to go, another 2 pounds of fluid is still sitting in her tissues. The swelling looks slightly better, but still horribly uncomfortable. The doctors tell me it will take days to get the fluid off at the rate she is going. In addition, the excess fluid has leaked into her lungs and caused pleural effusions on both sides so now she has that to contend with while trying to breathe independently. I really don't know how this poor baby can possibly be strong enough for this, but she makes improvements and continues to amaze me each day.

Evening update: The vent settings were weaned several times throughout the day, but Emmy never made it back to the "auto mode" which requires her to do all of her breathing on her own. The settings will continue to be weaned overnight so that hopefully tomorrow morning they will be able to put her back into auto mode in preparation for extubation. The Epinephrine was discontinued today, so she now has 1 less IV line and pump! They were able to start her on feeds through a tube in her nose. For now, the rate is very slow and increases by only 1cc every 6 hours. The goal is just to prime the the GI tract for full feeds later on, and Emmy is tolerating it very well. Her Fentanyl drip (pain medication) was lowered to allow her to be more awake and hopefully do more breathing on her own. She does occasionally seem to be in pain and require extra medicine to calm back down, but the nursing staff is quick to respond when she shows signs of discomfort. The team continues to tell me that she is doing well and making excellent strides toward recovery. I am happy with her progress, but as always wish that our goals could be met faster!!!

Post-op day #3...weaning the ventilator

December 15th: Every day I attend the medical team's morning rounds so that I can hear their perceptions on Emmy's progress and what they plan to accomplish for the day. Today, the goal is to wean her from the ventilator. This morning, the settings on the vent were changed to allow Emersyn to initiate all of her breathing on her own. The breathing tube is still in place and the vent is still hooked up, so if she doesn't take a breath for more than 12 seconds the machine will breathe for her. So far, so good...she is doing all of her own breathing- BIG stride for such a sick little girl!

The ICU doctor says he doubts she will be able to be extubated today because she is still so swollen. The excess fluid in her chest and on her lungs will make breathing on her own more difficult, so for now it is better to have the ET tube in just in case she needs some respiratory support. He anticipates that the tube will be able to be removed tomorrow. That's great news for me because when the ET tube comes out, Emmy can be held again...fingers crossed that tomorrow will be the day!

Evening update: The day is almost over and I'm sad to say, we've made little progress. Although she is putting out more than adequate amounts of urine, Emmy's swelling looks worse than ever. Her head has become so swollen that her ears can no longer lay flat...instead they stick straight out to the sides. Her head, torso, and perineum are swollen to the point that her skin is tight and firm to the touch. It just looks so uncomfortable. The medical team discussed adding a second diuretic several times today, but ultimately they came to the decision not to change her medication regimen because of her lab work. Her BUN and creatinine levels have been slightly elevated indicating that her kidneys are working pretty hard so they fear that adding another diuretic would overload her kidneys.

The ventilator weaning went well during the day. Emmy remained in the "auto" mode all day, which means she was doing all the work. Unfortunately, this evening, as she is sleeping more deeply, she is needing more support so the vent settings were changed to give her some additional assistance. The respiratory therapist told Bryan and I that she most likely will not be extubated until Saturday or Sunday. So once again, we are playing the waiting game...agonizing, but we are doing our best to remain optimistic!

Our one big win for the day: Emersyn was taken off of the Dopamine. Hemodynamically, she has become more stable and her blood pressure is trending upward so they were able to discontinue one of her BP medications...yay, anytime we can get rid of a something, we consider it a WIN!

Post-op day #2...the road to recovery

Wednesday, December 14th, was when Emmy seemed to turn things around and start making progress. Her kidneys started working again and she began making urine which would eventually drain off the excess fluid that had collected in her tissues. Her labs and vital signs all improved and they were able to start weaning some of her cardiac medications. Her surgeon removed her chest tube and took the surgical dressing off of her incision...ugh, the incision. From this day on, her scar will be visible every day of her life.

I have mixed feelings looking at her chest. The scar is ugly and no mother wants her daughter to live with scars...I think prom dresses, bathing suits, tank tops, etc. It will probably not be very easily hidden so she will constantly be asked what happened, and that makes me sad for her. On the other hand, this scar is from a surgery that allowed our baby to live, so while I hate looking at it, I am also tremendously thankful for it. I know that it will fade and we will become used to it, and I hope those days come sooner than later. In time, I hope to look at her scar and see it as something beautiful...that is what I hope to teach her to feel when she looks at it. My wish for her is that she will not be embarrassed, but instead be confident and proud of the scar on her chest and the opportunity it gave her to live a full and happy life.

 Post-op day #2 brought lots of progress...

chest tube out and surgical dressing removed.

Daily struggles in the post-op period

The night following Emersyn's surgery was hard. Her blood pressure was low so she was frequently getting blood transfusions, albumin, and plasmalyte to increase her fluid volume. They were also concerned because she had stopped making urine when she was in surgery and had not restarted yet. Since she wasn't voiding, the more fluid they gave her, the more her tissue swelled. She was getting pretty puffy and that was problematic. Since her chest was fully closed in the OR, there was little room for swelling before the heart would be compressed. With the amount of swelling Emersyn was experiencing, this became a concern. In addition, her lactic acid levels were on the rise. Lactic acid is produced when muscles are overworked, so the medical team was worried that her heart was being overly stressed and not functioning properly.

Around 3am, the surgeon ordered an ECHO to look for cardiac edema and check her overall function and perfusion of the heart muscle itself. They were able to visualize some fluid around the heart which was not abnormal considering her extreme swelling. They also said the heart was slightly under filled which indicated that the extra fluid in her chest cavity was compressing the heart muscle to some extent. The heart was functioning well though, and there was no concern of leaking at the surgical sites or cardiac perfusion issues. Unfortunately, her lactic acid levels continued to rise and she still was not producing urine, so the waiting game continued.

By 8:30 am December 13th, her lactic acid level was finally starting to decrease which was a positive sign, still no urine though so kidney function became the big concern for the day. Emmy was almost 24 hours with very little urine output...less than 50cc. Her blood pressure was still low so they were continuing to give volume boluses frequently and she continued to swell more and more. Early in the afternoon, one of the doctors approached me to explain that if she continued like this, peritoneal dialysis would be required to drain off some of the fluid and continue giving her kidneys time to recover. Ugh...I hated the sound of that, but I had incredible confidence in the medical team and never once questioned their decision making. I knew they would do what was necessary to keep our little girl on the path to recovery.

That night was more of the same...no urine. Her blood pressure was improving though so that was a positive sign. The decision about dialysis would be made at morning rounds, around 8:30am. I think we had an army of people praying that this little girl would pee! And thankfully, those prayers were heard. Around 4am on December 14th, her second post-op day, Emersyn finally started producing urine. I had never been so excited about pee before and I doubt I ever will be again! By morning rounds, the doctors said they were confident she would not need dialysis. She still looked horrible...looking at her made me cry. She had 2 days worth of fluids collected in her tissues and she looked like a balloon ready to pop. It was a very ugly picture and I hated seeing her like this, but I knew that she was improving now even if I couldn't see it yet...and that was comforting.

 Post-op day #1

Post-op day #2

This brings us up to date. Happier pictures to follow, I promise...she just needs more time! I'm told by all of the medical team that she's doing amazing considering the operation she's undergone. This is how it is in the medical world...everyone wants to see more progress faster. But Emmy is already showing us that she is a girl who won't be rushed...she is very strong and fighting hard, but she will do things in her own time!

The Arterial Switch Procedure

Emersyn had her switch procedure on December 12th. She went to the OR at 7:30am and it was absolutely heart breaking allowing them to take her away. Even though this procedure has a 98% success rate, there are plenty of risks- the worst of which obviously being infant death. No matter how much you try not to think about that, it is impossible to let your child go without the thought that they may not return crossing your mind...such a horrible thought.

The OR nurse told us that he would come out occasionally to update us on Emmy's status, so we waited in the surgical waiting room for hours. Around 9:30, the nurse came out to let us know that all of the lines were in and she had been placed on cardiac bypass. The surgeon, Dr Nigro, was preparing to start the repair. We were told that it would be at least a couple hours before we would be updated again.

At 12:00pm, the nurse came back out and said that the repair had been successful and that they would be taking her off bypass soon. After she was removed from bypass, Dr Nigro would keep her chest open for a while to monitor for bleeding at the surgical sites. Sternum closure would be very slow to ensure that the bleeding was controlled and her heart was not going to swell too much for full closure.

After surgery, Emersyn would go directly back to her ICU room for recovery. We were told to wait in the CVICU waiting room and that the nurse would call us back to the room once they had her settled and we were able to see her. Dr Nigro came to update us in the waiting room with all good news. The surgery had been "a textbook switch procedure" and everything had gone perfectly. He had been able to close her chest completely which we were thankful for. He said that we should be able to see her within the next 20min...feelings of relief and anxiety to see her swept over us.

An hour later, we were brought back into her room. There were several doctors and nurses surrounding her little warmer so Bryan and I just sat on the couch and stayed out of the way. Everyone was busy...doing 5 or 6 jobs it seemed, but it was very well coordinated- a controlled chaos. Emersyn was bleeding from her chest, and they were unable to determine where it was coming from. After a call to her surgeon, he showed up at the bedside, and removed her surgical dressing. She had pacing leads that went through her skin and were stitched directly to the heart to be used in case of an emergency. The blood was coming from one of the pacing wire sites. Dr Nigro stitched the site closed and covered it with surgical glue, then redressed her incision...nothing to be concerned about, thankfully.

When we got our first look at our baby, it took our breath away. She was covered head to toe with lines and tubes and leads. She was nasally intubated and on a ventilator to help her breathe. She had a nasogastric tube in the other nostril which was hooked up to suction to remove gastric secretions from her stomach. She had a midline chest incision that went from about an inch above nipple line to 2 inches below. She had a chest tube just below her dressing to drain excess fluid from around the heart. The pacing leads were coming from the right and left sides of her chest. She had a foley catheter in to drain her bladder, and a rectal probe which constantly measured her temperature. Then there were the IV sites: 2 central lines- one coming from the right side of her neck and the other in her right arm. An arterial line had been placed in her left arm and a peripheral IV in her right foot. As far as medications, she was on dopamine, epinephrine, and milrinone to stabilize her blood pressure and heart function, hydrocortisone and T3 also for stabilization, fentanyl for pain, TPN and lipids for nutrition, clindamycin and ancef to prevent post surgical infection, and heparinized IV fluids.
The picture was horrifying but the medical team gave us consistent reassurance that she was doing well.

 Our first post-op picture of Emmy...poor baby :(

A glimpse of the setting...9 IV pumps, a ventilator, and lots of monitors.

Our first days at Phoenix Children's

From a medical standpoint, our first days at Phoenix Children's Hospital were uneventful, but to me and Bryan they were pretty important. Emersyn was stable and doing well considering her heart defect. The doctor allowed us to start trying to breastfeed, but she had difficulty latching and was easily tired out when trying. The physician and I came to the decision to place an NG tube and start feedings that way. It wasn't the ideal situation but it would allow us to get something into her little tummy which would hopefully comfort her a little.

A close up of Emmy, wide awake with her NG tube in.

The sticker on her forehead was used to measure her cerebral

oxygen level. Her eyes and face are pretty puffy here from all of the fluids

she was getting to stay nourished and hydrated.

Emmy finally got her first bath,

and she was not at all happy about it!

The CVICU staff was wonderful about promoting bonding between the infant and parents. They were cautious about holding, but felt that the benefits of allowing us to hold our little girl outweighed the risk of dislodging the umbilical lines, so with the nurse's assistance we were allowed to hold Emmy as much as we wanted- which was most of the time! It was amazing how much more stable her vitals were when she was held...what this meant to me: less dinging and beeping from all of the equipment she was hooked up to! She would sleep on my chest through hours of the night, and that was when both of us got the most rest.

 Daddy and Em got to share their first football Sunday together.

Bryan kicked back in the recliner holding his girl while she slept the day away:)