First Week of Life

Hey.

I am writing this on conclusion of the first week of life after birth for Avery and Wren, our awesome little premature twin girls.  Rewinding a little, it was only about seven weeks ago that we learned (a) that our single baby we were going to have was in fact two babies, (b) that they were a high risk type of identical twins called Mono-Mono (mono chorionic, mono amniotic with a single amniotic sac),  and (c) that Shannon would need to be hospitalized starting around week 24 of pregnancy to receive regular monitoring.  That last one is thanks to the fact that these mono-mono babies shared the same space with no membrane between them -- as a result, they had the ability to twist and compress one another's umbilical cords, thus potentially cutting off circulation.

Well.
It turns out they were pretty good at twisting the cords.  Shannon was supposed to stay in the hospital, bored out of her mind and being monitored every few hours until a target date of week 32-34 (late September), when the doctors would perform a C-section to deliver the babies.  What actually happened, though, was that on a week ago today, on July 31st, the medical staff began noticing a fairly regular drop in heart rate of one of the babies we called "Baby B" at that point.  They decided to put her on continuous monitoring, and saw that the heart rate drops were falling to about 80 beats (from around 150) with some regularity.  They started to show signs of improvement through the day, so we didn't worry about it.  However, the next day the signs got worse.  At one point, Baby B's heart rate started to steadily decline down to and below 60 and was looking dangerous.  Our doctor ordered immediate action.  Shannon was rushed to the operation room, immediately administered general anesthesia, and operated on.  Meanwhile, I was of course unwittingly working away at my job when I received the phone call. By the time I got to the hospital, of course, it was already past delivery -- it only took them about six minutes to do the whole thing.  I walked with my babies immediately over to the intensive care unit and remember hearing a lot of stuff about what was going on (that I don't remember) and a lot of medical talk that sounded like another language to me.  After delivery the doctor confirmed what had happened -- the two umbilical cords had done a long twist, a solid knot (which the doctor mentioned looked like fisherman's knots, I remember), another twist, and another big knot.  The weird part of me wished he had snapped a photo.

When Shannon came to, I talked to her and try to reassure her that the babies were doing well, but she was of course pretty out of it due to the heavy anesthesia.  That evening, my brother Tony and I were able to give priesthood blessings to Avery, Wren, and Shannon, all while trying to take in everything that was going on.

That brings us to Day 1.

Meet our lovely ladies; Wren (right) at 11.75" and just over 1.5 lbs, and Avery (le at 12" and just under 1.5 lbs.  The medical providers knew right away that Wren had had a pretty good start as far as 25 week babies go, and that Avery had had a "rough start".  I didn't quite know what that meant, but the doctor explained to us some of the risks involved with babies who have been low on blood and consequently oxygen.  He explained that one of the principal risks is that the brain can be susceptible to bleeding, which carries with it a huge amount of risk due to the potential for brain damage.  This day was a rush, but at this point I for one was feeling that our babies were going to be ok and were in exceptionally good hands, especially after meeting the Nurses working with our babies in the NICU and the other staff such as respiratory therapists, Nurse Practioners, and zillions of others.  I have an image in my mind of the babies in a quiet room, both in isolettes on opposite sides of the room, with 2-3 staff actively working on them through most of the entire day, getting them hooked up to monitors to check their heart rate, breathing, O2 and CO2 levels in the blood, breathing tubes, feedings tubes, tubes everywhere, and a nurse with a small manual pump moving up and down.  It only struck me later -- that person is keeping my baby alive right now.  We got little sleep that night.

Day 2

We started to get a better feel for the condition of the babies.  Both were in need of a lot of drug treatment, special ventilators for breathing, photo therapy, and various other things.  A head ultrasound was performed on both in the morning to monitor for whether brain bleeding had occurred.  While Shannon was resting in her recovery room, I went to the NICU yet again to check on the status and see if they learned anything from the ultrasound.  Rather than let me know, the Doctor on shift at the time told me he'd meet me and my wife together in our room to give us an "update".  When your doctor wants to have a sit down chat with you in a quiet place, you know you're not looking forward to the conversation.  Well, sure enough, he came to let us know that they identified a hemorrhage in Avery's brain.  They measure these on a scale of 1 - 4 with 1 being pretty minimal bleeding and 4 being extensive, going into the actual brain tissue.  He kept going up the list, explaining what the numbers meant, and meanwhile I kept wondering, 'why hasn't he stopped yet?  Why is he now explaining a 3 if she's a 2?  Why is he now explaining a 4 if she's a 3?'  He then told us that Avery was observed to have a level 4 bleed on the right hemisphere of her brain, and a level 3 of her left.  The doctor pulled no punches, telling us exactly what this could mean for her.  As the body begins to clear out the blood, some of the brain tissue -- if not large portions of it -- could be basically destroyed and effectively dissolved, leaving devastating damage.  We don't and can't know exactly what this translates to at this point, but he explained the range of possibilities could include a lot of things on the table -- for example, whether she'll be blind, have the ability to move her muscles, be able to eat on her own, and any other potential risks from significant brain damage.  He warned that she might experience siezures in the coming days, and that depending on how she does, we would need to make decisions about her care...which I took to mean whether she would be kept on life support depending on whether her situation got bad.  After learning about this last detail, I couldn't handle the thought and sort of just broke down.  After the doctor left and I was left to talk with Shannon about what this meant for our baby, for the kind of life she could have, and for out own, I was struck with how calm she was about the whole process.

Day 3
After dealing with our fears about Avery's brain hemorrhage, I was in a much better place emotionally in the morning.  After talking a lot about it with Shannon, I came to know that there is some kind of delicate balance between faith in the future and understanding in the present.  While it was still too early to have any idea of what could happen for her, we know we can remain optimistic and have faith that a miracle can occur for her, all the while understanding that she may not be able to have the life we would hope for her and still know that God's hand is over us all.  Our optimism took a hit though, when on this afternoon Avery suddenly had a fairly significant bleeding inside her lungs.  At this point, she needed another blood transfusion.  I felt the need to give her an additional Priesthood blessing and did so alongside my brother Tony again.  After this, she began to stabilize once again, and we were again feeling hopeful that things would start looking up.

Day 4
Finally, we had a day without any new problems being introduced.  Both Avery and Wren were fairly stable for a whole day, apart from the constant changes applied to their ventilators, and a second head ultrasound was down for Avery, and they found that the bleeding in her brain had not gotten any worse.

Day 5
The babies began being fed breastmilk on day 3 or 4, and began being more regular with it today, which is a really exciting thing, because it's the best form of nutrition and medicine that premature babies can receive.

Day 6
Today, Avery was found with another issue, the doctor on shift discovered a white area on the left side of lungs, which he confirmed to be a small pocket of air within the chest cavity.  They will watch that to make sure it doesn't cause any problems like getting bigger and beginning to physically push the lungs and other organs, but for now they don't think it's an issue.  My bishop met with me today in the NICU to give both girls a name and a blessing.  It was a great experience.

Day 7
Avery and Wren are a week old today, which makes it awesome that we were able to hold them and do skin-to-skin contact with them for the first time.  Wren had spent most of the day being fussy because she was taken out of her swaddle to get more photo therapy for high bilirubin levels, and when Shannon held her, she calmed down and just relaxed.  I got to hold Avery and hang out with her for a while as well.  It was a great experience.  I just sat there, feeling good, and reading books to her.  Wren started eating more food today, about 9 mL every 6 hours.  Avery is still only taking 1.5 mL as she has for the last several days, because her digestive system hasn't really seemed to kick on yet like Wren's has.





So. I would probably write more details or provide more pictures, but it's late, this is already long, and my mind is feeling fried.  This week, Shannon and I have felt overwhelmed by the amount of love, service, and support we have received on behalf of our babies.  I wish I could enumerate every act of service and every kindness, but I would fall short in the attempt.  Instead, I just feel grateful.  Grateful to people, grateful to our families, and especially grateful to God.  This week, I have learned that life -- all life -- is truly miraculous.  I have always known this, but seeing how fragile and tiny it can be, this truth was made somehow more sacred to me than it ever was before.  This kind of thing has the effect on me of really putting everything else in perspective.  We don't know what could change next week, but we already love these babies deeply, and know that our other kids do too.

A couple of observations: It was really  exciting to learn that we as parents could have a direct influence on the babies' progress during their 3-4+ months in the NICU.  The nurses explained that the babies know our voices well and have a good sense of hearing, and that talking to them can help soothe and comfort them.  In addition, just putting our hands inside the isolettes softly around their head and feet ("containment") is another great way to soothe them.  As the nurse explained this to me, she was able to observe on the machines that just from me talking to Wren and doing containment, her heart rate steadied a bit, and the oxygen saturation levels of her blood improved.  It was huge to realize that we are much more than passive observers in this process.

Secondly, the power of empathy is amazing.  We love to see how the nurses sincerely love our babies and want them to succeed like we do.  On a few occasions, I have seen nurses explaining something to me in a professional way while holding back tears.  They feel what we feel in a real way, and it is awesome to know the twins are in such good hands.

We'd also like to give a personal thanks to Brandy of Huckleberry Cloud Photography who came and did a shoot for us and our babies. She was very kind and did an awesome job and was very appreciated.