a collection of random thoughts and ideas from me, her, and sometimes us
To get released from the NICU, BBA had to make it six hours without his blood sugar dropping. It was an arduous process, with frustrating setbacks and a new diagnosis we will keep for a while. But he did it. At our endocrine appointment yesterday, we decided it’s time to wean off the medication that is supposedly helping to balance his insulin and glucose.
We knew that we were going to ask the question yesterday but it is still a bit strange to think we can start this process. If we make it through, we will be down to one medication (for his thyroid) which we will be one until at least age two. We have been at a barely palliative dose of the insulin medication for months now and endocrine thinks his system does not need it. The way to find out: reduce the dose by half for two weeks, testing his blood sugar twice a day. If he makes it those two weeks without dropping his blood sugar, we go two more weeks with no medicine testing his blood sugar twice a day. If he makes it those two weeks, we are home free (theoretically) and just have to test if his behavior changes. So, for those of you with the wherewithal, cross your fingers for a while that we make it through.
Next stop, pediatrician at the start of the new year. After that we could have a few months of normalcy without doctors appointments every week. Again, fingers crossed.
Hello again. We have been on an upswing for the past few weeks, just trying to get through to the end of the year. We have had some ups and downs, but are diligently working to figure out how to address the remaining challenges that exist. One to cross of the list: eyes.
We met with the amazing pediatric ophthalmology team at the JHU Wilmer Eye Institute on Wednesday to address some concerns about focusing and overall ability to see. It is remarkable what they are able to do for a FIVE MONTH OLD BABY to assess eyesight, and to make repairs to eye structure at this point to eliminate future issues. The visit we long and arduous, but resulted in amazing news. His eyesight is great. There is no damage to his optic nerve. And the focusing issues we are having are most likely a result of his prematurity and he will grow out of them. High five BBA!
Follow up with endocrine next week and hope for some medication adjustments. Updates on that to follow.
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.
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.
On our way to the hospital. We will post updates all day on BBA’s Twitter feed:
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.
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.
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.
Been a busy week or two. Last week, we took BBA to his follow up pediatric gastroenterology appointment. We really had no idea why we were going but come to find about jaundice and liver concerns fall under GI. Since his bilirubin levels hadn’t gone all the way to down to a normal level, the doctor (after an hour of trying to figure out why we were there and reading his chart) decided we would go on a 5 day medicine treatment to clear him out and then perform a HIDA test. If they didn’t prove to be useful, we would need to get a liver biopsy and possibly exploratory surgery by the end of the week. They were looking to run out a rare condition known as biliary artesia. After the 5 days of medicine and being on pins and needles assuming we would be the 1 in 10,000 they did the first test. We were scheduled to get follow up tests all day Wednesday every 4 hours.
Thankfully after the first set of tests, they could see the tracers and all the digestive organs and there are no problems with liver, gallbladder, bile ducts, etc. And we didn’t have to go back for any more. As well, his d bilirubin levels have come down from where they were and should be stabilizing around the normal level. Have to follow up in a month.
Next came an ultrasound on his arm to see of the blood clot from the PICC line in the hospital resolved itself. Another good result. No trace of the clot at all! At our follow up with pediatric hematology, we were officially removed from the blood thinner which means no more injections or ports in his leg. Down to oral medications.
Since then we have also been removed from another medicine. Hematology is trying to get up one of his numbers that relations to fighting infections. We have a follow up blood test for that this week.
Also have their 2 month checkup this coming week. Hard to believe it has already been two months! BBB meanwhile is a championship eater and burper. And generally sleeping through the night for a week or two. Both still need to work on tat pooping regularly thing but they byare coming around.
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.