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!