Home Sweet Home

March 16, 2011 - 1st Day home



They finally meet




First picture of all 4 of us !



2 weeks and 2 days passed by since John's Norwood procedure (for those non-heart parents, its the first open heart surgery) and 20 days old and the doctors were confident that we could take him home. They all agreed he has recovered nicely and I'm competent enough to properly care for him. This baby comes with a special instruction manual and I spent two full days and nights learning how to do it all. I now know how to  check NG tube placement, how to place the tube in, how to administer 5 types of medications, how to begin teaching my son to eat by bottle and feed by NG tube, how to work a pulse oximiter machine, etc. It's not an easy job but one I will never complain about doing. I'm just glad to be able to hold him, which he took to fondly I may add, whether it's me or Joe, this baby LOVES to sleep on our arms. We love it too, however he did spend the entire night in his mini crib/ bassinet in our room sleeping, minus the time I had to wake him up to feed and change the diaper.  It was also nice to spend the night in my own bed as opposed to the very nice to have but uncomfortable to sleep on futon that the hospital has in the kid's rooms for parents who spend the night. 

Emily was quite happy as well. She got to meet her little brother the day before on Tuesday in the hospital. Her innocence looked past the beeping machines, feeding tube and the IV line on his head and was SO happy to finally see this baby brother we were all talking about.  It was amazing to see her smile and be so excited.  However the next day when we brought him home, though she was also happy and excited, she was also more needy, wanting her paci for more than sleeping and wanted to keep forcing her baby brother to take his paci, which he doesn't take unless he's hungry.  Today, the second day in, she's a little better and that is to be expected. I know it was going to be hard going from one to two children, but between the fortifying, pumping, feeding, administering meds and getting the baby to sleep, leaves little time for Emily time with mommy, so I don't blame her for her behavior and only wish it gets better for all four of us. 

Back to John, he has done well at home for the first 24 hours and so have Joe and I.  We got decent amount of sleep and the house is not a complete mess yet, I have much more to do in order to organize our new normal routine but baby steps is our theme lately.  I prepare a 24 hour chart that points out each feeding time, medicine time, wet diaper count, vomit time, pulse ox spot check and a space for notes.  All this will be on a quiz later when the home nurse comes and visits 3 times a week.  I didn't pass my first quiz today because I did not have the exact amount of wet/soiled diapers John has had since we came home but I will not be unprepared again !!! I am also working on putting together John's binder of information we have received including the paperwork from the hospital, nurses, doctor visits, medications, etc.

We are pretty much sequestered at home with John as he has strict orders from ALL cardiologists on his team to stay away from public (germ infested) places and from allowing sick visitors. As we became OCD now, we purchased loads of hand soap and gallons of antibacterial hand sanitizers for us and foaming fun ones for Emily.  It just so happens that Emily just began to cough and have a sniffly nose since yesterday and I have to call the pediatrician to make sure I don't have to come in with her. I was ok'd to take John for limited walks around the neighborhood and on the back yard when it gets nicer outside. We do have a cardiologist appointment next Thursday and of course that is a necessary outing. 

For now we will try to work on a routine or "organized chaos" as most heart moms call it and hope I don't end up medicated as well as my sister likes to call it.

We are also still praying and ask for your prayers that he continues to do well, grow and prepare for the next surgery. God has proven to be good thus far and we continue to ask for strength for John and for our entire supportive family who is on this journey with us.

We are on a regular floor!!!! Hopefully home in next few days, we keep praying for him to keep doing well. .

So far more good News !!!

As of 6:20 pm today John is off of oxygen.

Since he got extubated he has been on high flow oxygen and started on 4 liters and 70% flow as well as a nitrix machine that was supporting his lung function.  As in Johns true nature since the beginning, he took things at his own pace and was quite sensitive to changes so he was weaned off of the nitirx and oxygen VERY slowly. If  they moved him down by more than 5% at a time his sats began to lower and he began breathing much faster. So the doctors took things slowly and he lost the nitirx machine on Friday afternoon and regular flow oxygen by Saturday night. Today they did some test runs on room air without the oxygen and he was desating again so they lowered the oxygen to 1 liter, than .5 liters and only 20 %  and then finally turned it off to see if he would tolerate it. and he did. We called tonight and he did great the nurse told us. Hopefully things continue to go as planned and the cannulas will not have to go in again.

Additionally, since Saturday afternoon, John was on step down/ regular floor status, meaning he's getting regular nursing care even though he's still in PSHU. The only reason he stayed in PSHU over the weekend is because they don't transfer patients on the weekend. So he was upstairs on 3 for this weekend.  Tomorrow John takes a wagon ride to the second floor they tell me. I can't wait to be there to see him moved.

Finally, I heard the D word this weekend --> DISCHARGE. As I told all the nurses and doctors, this seems much too soon. On Tuesday it will only be 2 weeks since his most complex of the 3 open heart surgeries he has to endure. I know he's doing really well and the doctors know what they are doing and I trust them completely, but we were prepared for 4-5 week recovery.  I'm really proud of my baby for being so strong, now I have to be just as strong to take care of him. We had nurses take care of him 24/7 because we weren't able to and I'm starting to question my own abilities. I was assured that the nursing staff on the 2nd floor will teach me everything I need to know on how to take care of my fragile heart baby, but taking him home and taking Emily home are two different things. Sure we were scared to bring her home but for completely different reasons, we were first time parents but of a perfectly healthy little baby, fragile- yes, but still pretty resilient.  Anyways, I was also assured that my scared feelings are completely normal and my instinct will take over, John was strong, now I need to be for him.  Maybe we will be home by the middle of this week if my JJ continues to do as well as he did this weekend.

Plans for this week are:
John must learn to take the bottle and continue doing what he has been for the last two weeks.
Mom must: calm down, learn to administer 3 types of medication twice a day, catch early signs of cardiac distress, learn to insert the NG tube (most likely), take the mandatory CPR class, sterilize the home, get the car seat ready, go shopping for baby essentials and again CALM DOWN because this is a good thing that we are coming home.

Emily will finally meet her baby brother. I can't wait for that to happen. These 3 weeks have been such a roller coaster, I pray that John continues to do so well and ask that you all continue to pray for him as well.

Happy Tachypneic ...

So we did not move to the step down today and I'm not sure if we will do so tomorrow. John is having a hard time respiratory wise. He can't seem to find a comfortable pace of breathing. He's fine and steady for a couple of hours and then has a fast breathing episode for a couple of hours.  They call him a "happy tachypneic", purely meaning a fast breather with OK sats , but today I got to hold him and he went either really happy or mad because instead of his happy 70-80 breathing rate he jumped to 100-150 at some point, not even the CPT's, suctioning or anything seemed to slow it down.  The doctor seemed quite concerned, and so were we (Joe and I) so they did two blood cultures, and a urine sample because along with this breathing he also had a temp. 38.8 C. I hope the cultures don't show an infection. We won't know until late tomorrow.

On a brighter side, he did seem to take a liking to the pacifier. I bought him one type (the type Emily liked) and Sisters-by-Heart provided a different one in their care package I received once I found out we were expecting an HLHS kiddo. He took to the later, thanks ladies, the Gumdrop pacies look much better than the ugly hospital one. 

Also I received my Mia Marrone Foundation Heart Charm. I wanted one for a long time but they were pink and I knew I was expecting a boy, so wanted something to represent that. Once Mia's mom announced she was going to get blue ones I was in the first order batch.  I got it a few days after the Norwood and am wearing it ever since. I love it and I love telling people what it represents. Here is me wearing it and holding my precious baby for the second time.

2nd time in Mommy's arms



Loving his Pacifyer



My HLHS Heart Charm from Mia Marrone Foundation

 


Tough Day (for me)

Today was a pretty tough day for me emotionally. I was reassured by all the heart moms that this is normal and most feel this way at some point, but it was still hard.

John was weaned off of his pain meds and only given Tylenol or other oral pain meds if he needs them. When I got there he seemed fine and was swaddled and looked comfortable, but then it was time to start his feedings again so that required an NG tube to be put in to his nostril which was already occupied by the nasal cannula for his oxygen (which he's being weaned off slowly).  So he did not take that well, then it was required that the nurse suction out whatever is down there first and he didn't like that either. She tried to retape his cannula and the NG tube and ripped off the tape 2 times and still the cannula was falling out so by then John was totally pissed off. One of the head nurses, Patty, came in and saw that he was struggling and wanted to retape him again, but I stopped her and asked if it would just be more comfortable to just tape the cannula up to his nose instead of his cheeks. It looks quite goofy but it would be less aggravating than ripping off the cheek patches once again. The other option I told her was that I could stand there and hold it up to his nostrils all day and I really wouldn't mind.  She opted for the tape up the nose. I agreed it was the least aggravating way to keep it up.

He fell asleep for a little while and then was fussy once again, this time there was no consoling him. I saw him looking at me and crying and hearing that raspy little voice of struggle and it broke my heart. I felt hopeless that I could not help my child.  He seemed mad and the pacifier didn't work, stroking his head didn't work, swaddling didn't help, lullabies, nothing. I felt like a failure of a mother, I couldn't pick him up or do much to help him. The worse thing was that when he looked me with those little eyes, I swear all I could think that he's thinking is 'why are you doing this to me' or 'why aren't you doing anything to help me'. It was just pure heart brake. I finally asked the nurse if he got ANY pain meds today and she said no, so I told her he needs something, it has to be pain related, at least it would relax him a bit. She did. Once he calmed down, it was time for another CPT and the respiratory therapist started beating on his lungs again. But once that was over she swaddled him and he fell asleep, I bet it was from pure exhaustion.

When he was sleeping he looked so peaceful, he rested for maybe an hour and then it was time for his vitals and diaper change which woke him up once again. After that it was time for me to leave to go home and since he was not sleeping I broke down again because I had to leave him and I totally felt that he knew I was leaving and he was probably thinking why is she leaving me. It was hard to leave him today.

Anyways, I think it's my emotions catching up with me after a week huge events in our son's life also the fact that Joe is no longer with me in the PSHU and we have to switch off. It was just not my day. John is doing well though but for some reason I'm dwelling on the bad and my own emotions, when I should be happy hes doing so good. Maybe tomorrow will be a better day.  

A quick update.... They are thinking step down either tomorrow or Friday... It seems way too soon for me but he's doing so well I don't want to jinx it .

Progress

Do you notice something new in this picture? NO BREATHING TUBE ! Early in the morning today, Tuesday, 6 and a half days after his surgery and at 10 days old they finally removed his breathing tube.  We are so excited. This is good, but the doctors warned us not to be upset if it still needs to go back in as not all kids are ready the first time, but we are still quite excited.  His sats were a little lower than the doctors wanted and his blood gasses were also similar so Jasiu was put on high flow oxygen through nasal cannulas and is still on nitrix (sp?) to help his pulminary bed which is still common.  He will slowly be weaned off of the oxygen as long as Jasiu sows to be responding well with his sats.

The only small setback he had is that his hemoglobin in the blood was inadequate for his condition thereforore he received a blood transfusion. He will probably get another one around two am as well. This should help him carry oxygen in the blood and keep up his sats to the level the doctors want to see. 

Since the tube came out today, he was supposed to get a day of rest, however because of the sats he got a respiratory treatment called CPT where they tap on his lungs (which looks like they are literally beating him around an area I thought would be almost untouchable for a while, where his chest was cut open). He didn't like this before the operation and didn't like it now. He also got an x-ray right after and then an echo. So much for rest when all these people were moving, tapping, sliding slimy wands over him etc.  But then he finally got some rest and smiled just as dad walked in to see him after work. I didn't have my camera ready, but I'm sure he was just passing gas, just as Emily was when she was that young she would smile when she passed gas also.

Anyways, if the breathing goes well overniht and tomorrow, they will start NG tube feedings and then slowly starting oral feedings later on next week maybe.

Keep praying for a nice recovery. Also we are following another HLHS warrior Legend from California who is a week older than Jasiu and he's doing just as well. Jasiu has a lot of HLHS'ers that he can take a great example from that are doing quite well and they are all such fighters that I can not imagine in a million years.

Keep up the good work buddy.  :)

Couldn't stop looking at that face all day !

Resting

Update

Jasiu is doing pretty well ! Thank God ! He is still recovering and so far no setbacks, except our little JJ still is depending on more oxygen than they would like so they are slowly weaning him off of it and slower rate so that he gets used to breathe on his own. The plan is to extubate tomorrow or Wednesday. He just wasn't ready yet today.  But we ARE progressing.

On Sunday he was off of Epinephrine, a drug that went directly to his heart to help him keep up the heart  rate and a few other things. He tolerated this well and his heart is doing well. Also the JP drain line went out, it drained some of the fluid from around the heart.  Still getting the lasix, Tylenol and fentanyl and versed and a few other meds. On Saturday they started to give him breastmilk, only 3ml/hour, and see if he's absorbing it and tolerating it. Unfortunately it was ok at first but then they had too much residual so the doctors discontinued it and allow him to focus on the breathing and then work on the feedings. Baby steps. I'm ok with that. I personally like to take things one step at a time, so I'm confident that Jasiu does too.

Today they took out the Foley  catheter and Jasiu can pee into a diaper like any other baby. He has mastered the poopsters quite well. I even got to assist with the diaper change a few times yesterday.  Than they bothered him some more and took out another line that went straight into his heart and was used to administer different medicines. it had 3 outputs so before that they had to transfer the 3 lines to one of the IV lines in his leg.  This is where I go on a rant... We had a "student nurse" today that is being supervised by our registered nurse. I saw that she's not as experiences, how can she be, she's a student. but she was changing  the lines. This is a sterile procedure, we all wear masks in the room  (even little JJ) and it took quite a while to do, when I saw this being done a lot quicker. Nothing was done wrong and it wasn't hurting him as it does not require poking, but I was still a little uncomfortable.  Since nothing was done wrong, I decided not to say anything, but as advice I got from other heart moms as soon as I feel something is wrong I will speak up.
Jasiu was also aggravated today when they tried to put another IV in and poked both of his feet once and without luck, than the assistant manager nurse came in and tried in his hands and was lucky enough to get it done on the first try. But now our little boy has no free hands to be able to hold our finger since he has an IV in each one.  I LOVED WHEN HE HELD MY FINGER, AND SO DID JOE.  Hopefully he will be able to get rid of more lines/meds over then next week and he will once more have a free hand to hold.

Other than that, today is the first day Joe went back to work and since I like to keep the noise level down in his room we have been doing a lot of texting. I think we will run out of text messages within the week if we keep texting back and forth. He will take the evening shift at the hospital while I spend some time with Emily in the evening.  Hopefully we are here for a short while and once we get used to this routine it will be time to go home :)   I can't wait.

Things we take for granted

As a first time parent to a healthy baby girl and then a second time parent to a CHD baby boy with HLHS, I realized that there are a lot of things I took for granted with my first child. I tried to be the best parent and give my child the best of everything I was extatic to be a parent yet was naive and had no idea how truly blessed we were to have her. We did all the normal baby things with her and did our share of complaining about the routine mundane sometimes icky things we had to do. If a CHD child is your first you probably don't know any different, however if he is your second here are the things I and many parents of perfectly healthy children take for granted. 

• Holding your babies - I got to hold Jasiu when he was 3 days old and assisted by 3 nurses and only for one hour
• Changing diapers - Jas is a week old and I have yet to change a diaper
• Feeding- his stomach has yet to get a drop of real food - should be able to get 3mls of breastmilk tomorrow
• Crying - I have only heard him cry once when he was born and then "heard" the silent cry which made me physically sick - I felt his pain and could not hear a peep.
• Having your baby gaze into your eyes - Jas opened his eyes yesterday for a few minutes and a few times today - it was wonderful
• Showing off your baby to friends and family - only closest relatives were allowed to see him, one at a time and after 3 minutes of scrubbing their hands up to thier elbows and some wearing face masks
• Sibbling rivalry/ adjustment - Every time I come home from the hospital Emily asks me if her baby brother is with me or when she can see him
• Supportive and hands on spouse - I don't think I could do this without my husband and someone to lean on, wipe my tears and join me on this journey on such a personal level.

I could go on and on, but I won't.  It sucks but there are worse things that can happen. I promissed myself I will not dwell on the bad but rather be greatful for the good.

I'm greatful for many things for our situation like:

• We live only 6 miles away from one of the best hospitals in the region that have one of the highest success rates in the country for CHD's
• We have one of the best surgeons along with his surgical team that performs the most complex procedures and is one of the most compassionate people I know
• We have a unit PSHU (Pediatric Surgery Heart Unit) that specializes only in children's heart surgeries and has the best nursing staff who only care for cardiac surgery intensive care patients.
• Our son was born a very healthy weight at 8 pounds and was ready for surgery on day 4
• We have the support and help from family and friends to take care of our daughter our home and us as well.
• We have a beautiful older sister who can't wait to meet her brother
• We have eachother (My wonderful husband is so supportive I can't imagine going through this without him) Also - Happy Birthday to him today.
• A wonderful network of other heart moms who know exactly what we are going thorugh and are willing to share and support each other. I want to help other moms just like they helped me. It's a tough path to walk on.

For a quick update on John - HE GOT HIS CHEST CLOSED today ! Good sign for him. He will start feedings tomorrow a little at a time through the NG tube. He's finally tolerating being suctioned (getting mucus and such from his lungs) without being bagged and sats dropping. Now that the chest is closed he can lay on his sides and he's toletating handling really well. He's also more alert and is opening his eyes, wiggling his feet and grabbing on to our fingers when the pulse ox machine is not on his hands.  Let's hope he has a good weekend and than they will try to extubate (remove his breathing tube) on Monday. We will listen to John, as he is guiding his own path and letting us know with his sats and lab results when he's ready for things he likes to go his own pace so we won't rush him, as long as hes moving forward.  As they say - Slow and steady wins the race !

2 Days post Op

Today had it's ups and downs, for me, emotionally. John is doing well and is recovering smoothly thus far. All the doctors are commenting that his swelling didn't get too bad and is now on his way down and a medication called Lasix to help him reduce his fluids and help his kidneys get it out. His fluid intake and output is now negative which means he's getting rid of a lot of the fluid they are putting in and then some, this is good.  He is on a lot of different medications for blood pressure, some straight to his heart, calcium, pain medication, sedation medication and a few more that I can not even remember. He also got two lines pulled today! The venus and arterial lines from his belly button were pulled. This was the difficult to see emotionally part for me. The venus line was easier as it was pulled gradually and seemed to be pretty painless for him. However when they pulled the arterial line, it was all at once and I saw his pain. The nurses increased his pain meds, but he twitched, pulled his legs and even swung his arms when they did it and was obviously crying, though no sound came out. It was the most difficult actually seeing him in pain and trying to cry it out and me as a parent could not do anything to soothe him. I even think I felt that pain physically.  The second hard part that seemed unfordable to him was when they adjusted his breathing tube. He was producing a lot of mucus and had to be suctioned out a lot from his lungs and they decided that the tube was now too far down as the swelling was decreasing and they had to readjust it.  But overall he is doing well. His sats are good and hes actually over breathing the machine at some times during the day. This is another good sign for recovery.

After Friday mornings' rounds the doctors will decide if John is ready for his chest closure. If he's not ready yet there are small chances that will be done over the weekend. If not than we have to wait till Monday.

Friday at 12:34 John will also be a week old. How fast time flies. It was a week full of emotions and tears both of fear and joy. We thank God for everyday that we have with our precious baby and for every good day and for many more to come.

An update on the family, I will get my stitches out tomorrow and am feeling overall well. The pain meds are helping and I will begin to wean myself off over the weekend.  Joe is doing better too, he's finally sleeping a little better. Emily is also adjusting. She keeps asking about her baby brother and when he will come home. She also is SO happy to see us when we get home from the hospital. She is helping us cope with this as well, seeing her sunshine smile makes each day a little better as well.