Saturday, April 5, 2014

Moving Day!

We are not celebrating quite yet or ordering the UHAUL, but it's looking like the big moving day may be coming on Monday!  We are keeping our fingers crossed just in case.  Cohen has been behaving himself quite well and although he's getting very settled into his hospital bedroom, it's getting time to say our goodbyes.  This past week has been all about making simple changes to fine tune our little man. We have been working on weaning off of Ativan, increasing his feeds, and making sure he is an all-around happy baby!

 He was finally able to fully stop the Ativan (the evil drug he was put on over a month ago to come off of the sedation meds from the ventilator).  Cohen had a very hard time weaning off of this medication, and the small dose he was getting was something he craved each day. It was gut-wrenching to watch our four month old startle in his sleep, sweat through his buttoned-up footie pjs, and be so irritable that at times we stayed up all night rocking him in the blue pleather rocking chair adjacent to his bed.  It was a nightmare that Cohen lived for a solid month, that we watched him endure for almost 30 days! Finally a few days ago he was given his last dose of Ativan (0.1ml) and the symptoms subsided.  That was one of the hurdles he needed to jump over in order to be discharged, but there were a few more as well.

Cohen's feeding has also been an ongoing issue.  Being in the 3% for his weight, he has always had the odds against him and being hospitalized so much has only added to his struggle with his weight.  We did the math the other day and with all of the procedures and events in Cohen's life he has been NPO (no food) for equivalent to about a week and a half.  That is an enormous amount of time for a newborn to have no food.  This week we worked on increasing his rate of his feeds up to 33ml/hr which would allow him the calories he would need to gain weight as well as get 2 (3 hour breaks)  To put this into perspective a newborn usually takes about 33-60 ml in a 20 minute feeding period.  Cohen is taking that over an hour but on the lower end.  So although he is meeting his caloric intake, he could be getting a lot more volume if his little belly was able to tolerate it.  He did very well with the increase and once we were able to tease out the symptoms from weaning his Ativan, we could see that his dry-heaving was not from the volume of his food.  He has been gaining weight slow and steadily and is just now over 10 pounds.  We will be weighing him weekly and work closely with a nutritionist to help determine when he can increase his volume again.

Cohen has been finally able to participate in play group in the hospital.  Every day from 10:00-11:30 downstairs on the 12th floor there is a baby play group where patients can come down with all or none of their equipment, depending on what they are attached to have a change in scenery and environment.  Cohen has been in the hospital for approximately 39 days this hospital stay, but in total around 102 days!  He has missed out on stroller walks to the park, play groups, meeting other babies, and doing everyday routines that all babies get to experience solely because he has been sick in the hospital.  This week finally being stable enough I was able to convince the nurses to allow us to take him to the playgroup so he could see a setting that was engaging and stimulating!  He loved it!  The minute he was in his stroller he was smiling and so excited.  Here are some highlights from his time during the playgroup sessions.

video




He was starting to get into a sleep routine because of this which was great!  Taking shorter naps throughout the day and this has improved his evening sleep as well!



It is officially 48 hours before we will hopefully get to take our little man home for the fourth time and we are hoping this is the one that will stick!  As ready as we were the last time, this time feels right.  He is coming home with less equipment as before, but some additional meds to help his reflux.  His breathing is the best it has ever been and we are no longer needing to time him or stare obsessively over his monitors. In fact, he has graduated and now is only being monitored on a pulsomitor which we use at home anyway.  His previous nurses have been coming by his room to see him; he is quite the VIP patient on this floor and in the hospital. Last night, our favorite nurse from the PICU downstairs, Jill, came by to see him and she was genuinely so happy to see him doing so well and ready to go home. She calmed us during some of his roughest nights when he was intubated and having her be there on consecutive nights in the ICU was so helpful to his health and gave us stability! We also said goodbye to two of our favorite nurses on the 21st floor, Sarah (who I've talked about in a previous blog) and Mary Kate.  Mary Kate has become one of Cohen's regular nurses as well in the evenings and is Sarah's roommate.  They have grown so attached to Cohen and our family (we would like to think), that they have declared Cohen the "mascot" of their apartment.  They treat him with as much love as we could give him as his parents.  We often would find ourselves not rushing into the hospital on the days/nights that we knew they were working because he was in good hands. Don't get us wrong the majority of the nurses at this hospital are amazing and very helpful, but these two in particular are MADE for this job.  Like I said in a previous post, even if Cohen was having the worst day and everything seemed to be hopeless, they would give us hope.  They paged the doctors immediately if we had any questions, they took time out of their day to socialize with us when we were feeling lonely and left in our small, stark hospital room.  Although they are very much sad to see Cohen go home, they are very excited for him because they too are hoping that THIS TIME he will STAY home. Hopefully one day we can just return to Ann and Robert H. Lurie Children's Hospital to visit them again and all of the wonderful doctors, nurses, and staff that took care of him during his biggest struggles.

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