Day 5
Feel free to skip down if you just want to hear about Matthew! Today was my/Lisa's last day (hopefully!) as a patient in the hospital. All of the nursing staff on the 10th floor took amazing care of me, and I was happy to be able to say goodbye to some of my favorite nurses. The staff there is unlike any other hospital, and their care and compassion is absolutely amazing. I could write about many, many people, but I wanted to include a special thanks to:
Kate, RN - Such a warm and compassionate person, she would always come and visit just to chat, not just do vitals! We would talk about the different service dogs, my spooky Reiki lady, her upcoming house closing, vacation, kids, pets, etc. By the end she felt more like a friend than a nurse.
Donna, PCA - Donna and I also spent a lot of time just chit-chatting. She was usually the person taking my blood sugar, so I would see her not only for vitals but several times a day for the blood pricks. We talked about her crazy mother in law and her non-traditional wedding. She knew me so well that she would know my 2pm temp reading was going to be in the 99s because that's when my room got hot from the sun, and not to worry.
Maria, Housekeeping - Maria was the main housekeeper for my room, and she was absolutely so warm and loving. She would always tell me to keep my faith and introduced my to the Divine Mercy Chaplet. Ironically, just before my delivery she was going to the National Shrine to the Divine Mercy in Massachusetts, and she said she would say a special prayer there for me. When I got back from L&D and was in my new room, I was happy to see her there too. She told me she brought me something back, but felt awful because it was for both twins. She had gotten me a silver miracles ornament and there were two infant charms for it. The fact that she thought of me in this way while she was on her vacation and trip was really special. That ornament is now hanging in Matthew's isolate with both charms as we know that Alexander is always with him.
Marisol, RN for Labor and Delivery - Marisol came in when it was time for an IV and I was really in a lot of pain. She was absolutely amazing at re-focusing me and bringing me back. I really thought I was going to die, and she was just such a source of confidence and strength.
Hannah, PA student - Hannah's first day was when I was admitted, and her last day was the day I hit 26 weeks. I was the first patient she followed. She would check on me every morning before rounds, but would also stop by at night time to check again and sometimes more to just chat. Often she would stay for an hour, even though I am sure she wanted to get home as she had to be back at the hospital in just a few hours.
Regina, Hospital Administrator - Regina is like the mom to everyone that won't take no for an answer! She would hound patient services for the Reiki people or pet therapy. And she brought me the greatest part of my stay there (other than Matthew!) - the retail menu. After I had been there for two weeks she got a nutritionist down to see me and bring me the cafeteria menu each week. This meant I could order more than just what was on the hospital menu, and it certainly had a lot more flavor! I have let other nurses in the post-partum section in on the retail menu, as it seems to be much like the secret menu of Chipotle or In and Out.
Terry, RN - Terry was the nurse the night I went into labor. She tried hard to slow my labor with fluids, but baby Alexander knew it was now or never.
I hope to be able to write a similar entry for the NICU nurses on the last day that Matthew is in the hospital. As Sean frequently says, we hope that day is a "good" day.
The Good
Today was a good day for Matthew for several reasons. Of course that makes me nervous as we know there are going to be bad days, but for now I am going to force myself to celebrate the goods.
Weight gain - babies always lose weight coming out whether they are preemie or not. Today was the first of hopefully many days where he will continue to gain weight. He gained back 2 oz!
Feedings - they increased Matthew's feedings again, and he is now getting 3.5 CCs of breastmilk every 2 hours. We are hopeful that he continues to tolerate it, and that they can continue to increase it.
Urine output - It seems as though Matthew is starting to concentrate his urine now, we think because of the reduced fluid given to him.
WBC - Today was the first day his WBC count was up. Again, we hope this is part of an upward trend. They think it might have something to do with the reduced fluids as well.
Vent - They took his vent settings down again, and tomorrow the plan is to include a pressure test, which is essentially what they do to determine if the baby is ready to come off the vent. I know my NICU ladies reading this know this, but for all others, don't get your hopes too far up for this! He may not be ready, but just the fact that they are talking about trying is great news. There are also three other stages (NIPS, CPAP and Nasal Canula) before he is free of that!
Arterial line - They removed the arterial line, which was one of the two lines going into his stomach. This is a good step towards Kangaroo Care which we are really looking forward to!
Of course I am going to attribute all of this to the Reiki session he had yesterday! He pretty much stayed curled up and sleeping both this morning and this afternoon when we visited. In the morning Matthew was on his side and had his left hand over across his face covering his eyes. It was pretty funny.
The Bad
The biggest "bad" from today was that we got the results of the genetic testing for 3MCC for Matthew. Our older son, Christopher, was diagnosed with a rare (of course) metabolic disorder 7 days after his birth in 2012. We were asked to come to Yale right away, where we met with a geneticist. We of course had no idea what 3MCC was, and essentially the geneticist said our baby could be, on one end of the spectrum, fine or on the other end, could be in a coma or suffer physical and developmental delays, or even die. She was notorious for answering every one of our questions with, "Some babies get sick, and some babies don't." Essentially 3MCC can become an issue if the baby is already sick - what they call an intercurrent illness (obviously this sounds scary for a preemie!) Christopher genetically is actually heterozygous for the mutation that would cause it, however his phenotype (how he presents through his blood work, etc) is of someone that has 3MCC (normally someone presents as homozygous getting both mutations). Early on with Christopher we did a whole exome sequencing on both Sean and I, and they found the expected mutation on my sequencing, and they found a different mutation on Sean they believe causes it. Today we confirmed that Matthew has both of these mutations. There was a 25% chance (remember those Punnett squares) of our offspring having this disorder, and (of course) it seems we hit the lottery twice with that 25%. However, we would anticipate and are hoping that Matthew, much like Christopher, will be asymptomatic. So for now this means that the additional calories they will soon be adding to the breastmilk will have to be different than that of other preemies. Matthew will need to get a leucine free formula (3MCC means the body can't appropriately break down proteins) and he will also get supplemented with carnitine. As preemies are already carnitine deficient it is especially important he gets this supplement.
The Ugly
I don't think I can classify anything as "ugly" today. Certainly if we learned about the 3MCC today without having the knowledge we gained through Christopher having it, most certainly it would have been a very, very, very ugly day. I remember how devastated Sean and I were with that diagnosis, and how we felt like the walls were crumbling down on us.
Although this is a blog about Alexander and Matthew, I thought I would include a picture of Christopher (as I don't have any pics of Matthew today). Christopher seems to have made some friends he likes to play with at school....here he is with Arden.
