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a collection of random thoughts and ideas from me, her, and sometimes us
November 2, 2015Posted by on
I walked into our house this afternoon and was stunned. It was silent and empty. For the first time in four months. It’s remarkable how loud silence can be. We have craved it for so long and yet it did not hit me what it meant until today.
I went back to work today. BBA and BBB started daycare. @littlepund was thrilled to have them “in school” with her.
It’s strange. The last four months have been the most mentally challenging of our lives. Every day has been hard. While we have reached what has become our new normal, we are also acutely aware that we continue to hold our breaths for the tide to come in and make everything fresh again. @littlepund is thriving. BBA continues to improve, but also continues to struggle. BBB is one of the happiest babies alive…sitting calmly waiting for his turn.
We have looked forward to today and yet it’s bittersweet. The return to our daily lives was not as momentous as we expected. But I suppose we are also waiting patiently for the day that the new normal washes away and we can confidently say all kiddos are thriving and well. For that we have some more time to wait.
October 19, 2015Posted by on
Surgery went really well and was by all accounts a success. Since being home, BBA has been eating better, interacting more, and trying to understand what being more comfy is all about. Follow-up appointment this morning proved that he is healing well and can get a bath again (woohoo!).
Now we can settle in to normal life for a bit. Next anticipated hurdle will come in December with our next endocrine follow-up.
October 13, 2015Posted by on
On our way to the hospital. We will post updates all day on BBA’s Twitter feed:
October 5, 2015Posted by on
Prior to the ER visit two weeks ago, GI recommended that we consult with surgery to get some additional information regarding BBA’s hernia. Typically they are addressed between 1-5 years old because there is a possibility they can correct themselves.
We met with surgery last Wednesday and it was immediately determined that we would be doing surgery now – October 13 to be exact (three months and 11 days old). His hernia is so large and the muscle gap so small that there is concern his intestine can get caught and permanent, emergent damage could be done. Because of his past clotting issue and need to monitor his blood sugar, he will stay overnight.
We will post an update after surgery.
September 24, 2015Posted by on
today was good, horrible, and perfectly fine. i will start with perfectly fine, as it is where we are now and what people want to hear about, presumably. following four hours in the JHU emergency room, we are home with a clean-enough bill of health.
good news: after a high of nine medications, we are down to our last three. one may be discontinued on tuesday, one is an ICE medication, and one we have known we will be on for the long haul. the two medications that were discontinued today are a result of BBA’s bilirubin finally coming into normal range and his increased ability to maintain proper vitamin balance in his system.
horrible news: while the morning’s GI visit proved positive for bilirubin, the blood draw also flagged a significantly elevated potassium level which is one of the worst electrolytes to be out of wack. we were instructed to bring BBA back to the JHU emergency room for a repeat blood draw and EKG, as potassium has significant impact on kidney and heart function.
perfectly fine news: the EKG results were “fine” (more on that momentarily) and his potassium level had dropped a bit which lead our GI and endocrine team, along with the ER team, to believe that the initial results were skewed due to invitro hemolisis.
moral of the story: the more days that pass, the more i realize i am living in a parallel universe where “fine” is what i am hoping for. not normal. not great. not baby-tastic. just fine. we spent 21 wonderful days living in bliss of seeming improvement and “normal baby-land” only to have it crushed by a single phone call that something giant might be wrong. we are thankful that nothing is, but it was another reminder that, not just for BBA, something can always be lying under the surface that you know nothing about. it is a heart-wrenchingly awful feeling and, at the same time, a time to reflect on the need to be satisfied with fine because there is nothing wrong with it.
an amazing person in my life constantly reminds me to lower my expectations and find contentment in the status quo. i wish i listened to her more often, as she is always right . . . even if it takes me a while to get there sometimes.
so, as you end or begin your day reading this (for those of you still following our progress), enjoy the moment.
September 3, 2015Posted by on
It is September now. Two months and two days since everything changed. As Zack noted earlier this week, we got some good news last week. After a high (no pun intended) of 9 medications, we are down to 6 and may come off of two to three more by weeks end. At their two month check-up today, they both weighed in close to eleven pounds. They are growing, eating, and sleeping well. @littlepund has stopped trying to pull their feet off. Everyone seems to be settling in.
This has, however, and will continue to be the hardest thing we have ever done. There is no time, breathing room, or breaks when you have three kiddos two and under. The days are long and nights are longer. We don’t sleep a lot, we don’t hydrate enough, we are trying our best. The calm of routine is something we treasure, and when the routine and schedule are off, the challenge sometimes seems insurmountable. To get through, we just keep making lists and wanted to share some things with you all.
- They look markedly different. We knew they were fraternal twins, but figured all of our kiddos would resemble each other in some way. BBB looks just like @littlepund did/does. BBA is completely different – permanent tan (from bilirubin/jaundice but also tone), dark hair, barely any neck, short and squat. It’s just entertaining to see.
- Tandem crying is the worst sound in the world. Not only does it make you feel like you cannot do anything right, but the pitch pierces your soul and sets off instantaneous panic attacks. They are only quelled when you single-handedly stop the tandem crying and are somehow rocking two babies simultaneously on your shoulders. Highs and lows people!
- Twins are magical. There is something about the connection of twins. Their affect. Their mannerisms. Their self-soothing mechanisms. They are like the same person in two separate bodies and manifestations.
- Sibling love is part of nature, not nurture.
- Our kiddos are loved. There was never really a question about this one, but over the past two months it has been demonstrated in leaps and bounds. It is remarkable to us that we can be so fortunate to have family and friends who have become family and coworkers and acquaintances who want our family to succeed and are always there to offer us support and encouragement.
- Laundry is never ending. And thank you also to the people who come to our house just to fold our laundry. You are most appreciated!
- Pharmaceutical representatives are generous people. For those who work with me, you know I have known this professionally for some time. But to have a sick kiddo, and to have had the chance to benefit from sample products from pharma reps, you develop an even deeper appreciation. This weeks generosity: a case of formula being sent directly to our home (separate form the free samples you can get yourself). Yes, you read that right…..A CASE!
ZP and I are so very grateful for everyone who has offered us support – physical or mental – over the past two months. We appreciate it more than you will ever know and we are working on thank you notes.
And now, the hope of getting an hour of sleep before Thursday really begins. Wish me luck.
August 13, 2015Posted by on
For the late night/early morning readers, we just got home. Labs came back fine enough. Ultrasound was definitively ok. A couple of his medications need adjusting.
August 12, 2015Posted by on
It’s us again. We thought we would not be doing a post for a while but things have changed. Currently hanging out in the pediatric emergency room at John’s Hopkins. BBA has had some issues over the past few days at home and following a blood draw this morning with concerning results, we headed here. We hope to have some new answers in the morning.
August 9, 2015Posted by on
BBA is settling in and realizing what home is like. He seems to love being reunited with BBB. They are excellent co-snugglers.
Days are getting down to a routine. Nights are a little harder. BBA is eating every two to four hours, and really loving deciding he is hungry when BBB is set to eat (BBB is on a set schedule for eating). They both sound like ducks when they cry and hearing them in unison is adorable/hysterical and loud/oppressive all at the same time.
We have a long road ahead of us for BBA. The home nurse visits a couple times a week, we have weekly blood draws, and we have monthly appointments with every speciality and the pediatrician, averaging out to at least a visit per week. We will update the blog as we get updates and make meaningful progress or have notable setbacks.
Thank you all for reading along with us so far. We so sincerely appreciate your support of positive thoughts, well wishes, prayers, and finger crossing.
August 6, 2015Posted by on
If you know us well, you know we are numbers people, so after …
9.59% of 2015 or 5 weeks or 35 days or 840 hours or 50,400 minutes or 3,024,000 seconds
BBA was released from the NICU today. #reunitedanditfeelssogood