After 3 long days at the hospital I am back at the hotel and in touch with the world again. Jett was discharged from NICU on Friday morning to a regular room in the hospital. We are getting to be old hats at this juggling kids from hotel to hospital and back. Tonight Daddy is on Jett duty and Mommy is on hotel duty with the two eldest.
Jett is doing well. He remains on IV antibiotics and the good news is that all the culture reports came back inconclusive so although he definitely had neonatal sepsis, the source was undetermined and so the length of his IV antibiotics is now 10 days instead of 14. Which is exciting news for us. He is starting to eat again and still remains a 'lazy' eater, but he is taking in a good 30mls every 3 hours and sucking. Now we are just trying to get him to put some weight on. His big sister has passed him in weight when in the beginning she was the light weight of the two.
So...basically our time in India this trip, has been one bad turn after another. Both babies were released to our care from NICU on Tuesday, July 19th (remarkably less then 24 hour in NICU for 34 weekers) We had a mandatory 3 day hospital stay on the floor and then discharged to our hotel. Gerry and I did our best juggling all 3 kids and the twins were (and still are for the most part) very typical newborns.. Eat, sleep and poop. We had a 3 hour schedule and both babies wouldn't budge till the 3 hours hit. Dylan (whom we have already nicknamed, 'Our Little Diva.') would be the first to wake and if not attended to in 30 seconds she was/is going to let you know. Jett is our laid back 'chilled out' little guy and waits to be attended to. Both are just tiny and we worked (and still are working) on increasing their weights. Although small both were healthy and thriving.
After a week or so we noticed Jett was not taking the bottle as he should. We reached out to friends and family as this was all new to us. Blaze was such a textbook, perfect little baby, we were spoiled beyond belief with him. We sufficed that Jett was just going to be a lazy eater and it was going to take us some work to get him to feed. Other then that, he was a typical newborn. Finally after trying every trick in the book Jett still wasn't eating and got to the point in less then a day to not sucking at all. That's when I became concerned. It was like the bottle was an instant sedative, and when it hit his lips he would fall fast asleep. He was still alert, but starting to have more sleepy periods then awake.
We quickly called Dr. Yash and she suggested we take him into the ER for an evaluation as it sounded possibly like low blood sugar. Gerry took Jett over to Hiranandani and the resident doctor recognized Gerry from when Blaze was born did some lab work and said, ;go ahead back to your hotel and we will call you with the results in a few hours.' Jett was stable and although lethargic his blood sugar was good. Thank God for our amazing hotel accommodations that are a quick 15 min. rick shaw ride to and from the hospital. This has certainly been a blessing in disguise as we always stay at the VITS, we decided to take a leap of faith and try something new. Little did we know what a great decision this would be since we have had to make our fair share of visits to the hospital this trip.
Gerry no more made it back to the hotel with Jett when the Doctor called and said he needed to return with Jett right away his lab work was abnormal and he rattled off a bunch of numbers. After hanging up Gerry realized he should have gave the phone to me to decipher the medical jargon. (I am good for some things. :) We called Dr. Yash and she got on the phone to Dr. Bijal (the Pediatrician) and returned our call immediately. Jetts white count and platelets were abnormal and they were going to admit him to the NICU with neonatal sepsis. 'It was a good thing we got him in when we did as it could have been much worse.' Our hearts sunk and the tears flowed. Gerry headed back to Hiranandani while I stayed with the other kids. Dr. Soni and Dr. Bijal literally met them at the door of the hospital. Jetts bed was waiting for him in NICU.
They started him on IV fluids and 3 different types of heavy duty IV antibiotics. They placed an O2 hood over his head as the nurses noted he was have a few very short periods of not breathing. They placed an NG (feeding) tube and started all the testing. Labs, cultures, CT scans and lumbar punctures....
In the mean time Blaze was having diarrhea for quite a few days and we expected it was his large intake of fresh fruit. So we cut back only to have the diarrhea continue. We started him on some polyantibiotic liquid and he was still drinking and eating well, so we let it run its course. Expect for the fact that the same day that Jett was going to the ER, Blaze now started vomiting. Again we called Dr. Yash (we had her on speed dial this day) and she got some meds. ordered for the vomiting. Dylan (fingers crossed) was the healthy one. Or so we thought. Docs warned us to keep her and Blaze apart.
Jett was in good hands in the NICU. It was difficult to see him all alone with tubes and lines all over the place. I see this on a daily basis at work with my patients, but its a completely different thing when its your helpless child. We were allowed 2 visits daily and Gerry and I rotated so that we didn't have to bring the other kids to the hospital and risk getting them sick. His labs were improving slowly and all the culture results were coming up negative. The lumbar puncture was negative for meningitis (dodged that bullet!).
In the meantime we needed to bring Dylan in for a check up. We met Dr. Bijal and she had news on Jett. She did a CT of the head and to her surprise it came back positive for a grade 1 mild ventral bleed. Again our hearts sank. She stated that Jett was improving in his alertness and motor skills so she was not concerned. This is not uncommon in preterm babies. You can't imagine the terror of being told your 13 day old son has a brain bleed. Can you see why we have been somewhat tied up now???
Each day passed and Jett improved slowly. Labs were improving the IV fluids were slowly being decreased and they started him back on oral feeds. The feeding tube came out, the oxygen came off, the Jett we knew was coming around!
Unfortunately, our luck with Dylan ran out... during her 'routine' check up we found out that her weight decreased again, she now had an umbilical granuloma and oral candida not too mention the green goop we noted from her right eye that morning. Thankfully none of this serious, just more stress and worries on our part with more antibiotics and treatments.
So fast forward to today... Blaze is still with diarrhea and what a trooper, he hasn't skipped a beat with the exception of three times the normal diaper changes a day, every time he says, 'uh ohh, poopie' we groan and giggle. Poor little man. We are quickly running out of diapers and wipes. He is on an oral antibiotic and a second course of polyantibiotics.
Dylan's eye is great! Her belly button is drying up and her mouth is free of cooties. She is eating like a champ (twice the amount of her brother) and taking some vitamins and minerals to help increase her weight.
Jett remains in the hospital still receiving his IV antibiotics, and if all his blood work and repeat CT of the brain come back normal on Wednesday, we can bring him back to our home-away-from-home here at the hotel to be reunited with his big sister and brother.
Mommy and Daddy are worn out from around the clock feeds at two separate locations, sick children and the news that we now have to do DNA testing since 'it had been over 3 years since Gerry had frozen his sperm and that sample was used for the twins.' Not what we anticipated since it was the same sample as Blaze and no DNA testing was required then. When it rains it pours!!!!
Thank you all again for your love and support. They mean the world to us and we are truly touched by those who kept us apart of their prayers.