I don’t know how to write this post. I always dream that I’m an eloquent writer, but in my heart I know that I lack the words to adequately articulate my true thoughts and meaning when it matters the most. I hope you’ll understand that my mere words here cannot possibly express the heartache that I’m feeling today. This has not been a good week for babies. I have three stories to tell you.
Miracle Baby
I’ve written before about a friend of mine, though I’ve never used her name. After a struggle with infertility, in January she had a beautiful baby girl, Bailey. Bailey was born at 28 weeks gestation, at a mere 460 grams. That is less than 1 pound (480 grams = 1 pound). Bailey is a miracle baby. She is the first baby ever to survive under 1 pound at the hospital she was born at. She is a miracle to have come into her mother’s life after a struggle with infertility. Shortly after being born, Bailey developed a blood clot and had to have part of one arm amputated below the elbow. But she was doing okay. She was weaned from her ventilator, she was gaining weight. She needed to be 4 1/2 pounds to go home, I think. But she ended up back on her ventilator, though she continued to grow. Last week, she had a trach put in, in hopes that she would be able to go home with the trach eventually. She is 5 1/2 months old and she’s never called anyplace other than the NICU "home."
Yesterday, Bailey wrote the following in her CaringBridge blog:
Mommy FINALLY
got to hold me yesterday for the first time since May. However the
celebration was short lived. I took a turn for the worse and had to go
up on all of my settings last night.
Today
I was really sick and the Dr. told my mommy he didn’t think I was going
to survive because my body is growing but my lungs are not. My lungs
are damaged from being so premature and from being on the vent for so
long. My heart is having to work so hard to circulate blood thru the
tiny vessels in my severly scarred lungs. The Dr. said he didn’t know
how much more my heart could take.
Mommy
told me that Doctors do NOT know everything and that I am a child of
God. God has a plan for me that even the Doctors cannot predict and
with the help of all of my family and friends God will protect me and
heal me in ways this place has never seen.
This is simply a "rough patch" for me so please..EVERYONE stand by me, keep the Faith and travel this road with me.
I am heartbroken, but still hopeful for Bailey. She is already a miracle baby. What’s one more miracle?
Baby M
My friend J was a tremendous source of support to me through my struggle with infertility. She was the ONLY person in my community who I told about my blog and who I gave the gory details of our fertility treatment to. While I’m very open about the fact that we sought treatment, I don’t talk about the specifics with many people in my community. J is special. She had some difficulty getting pregnant with her first child, but finally got pregnant after her HSG, before having to move on to actual treatment. N is her beautiful daughter, now 1 1/2 years old. J told me she was pregnant while I was still struggling to get pregnant the first time, with such sensitivity and caring – in a way that no one else has ever managed before. I really appreciated it. I was overjoyed for J when I found out she was expecting #2.
I was heartbroken for J when she found out 2 months ago that her baby had a serious heart defect which would require multiple heart surgeries to treat, and would affect the baby for the duration of his or her life. The baby was missing the right ventricle of the heart. While this is better than missing the left ventricle, it is still not a good thing. J and her husband knew that their baby would need at least two surgeries (at 4-6 months and later, I think around 18 months), but were hoping to avoid the first surgery that not all babies need, immediately after birth.
J was overjoyed when her daughter, M, was born two weeks ago and didn’t need the first surgery. The first hurdle was cleared. So long as her oxygen level didn’t dip too low, they were told, they could treat Baby M like any other normal baby, just with more doctors’ appointments. Thank G-d.
Unfortunately, this week, M’s oxygen levels were dipping into the 50’s and 60’s and she was readmitted to the hospital. Although the doctors have attempted to treat her with medication to
stabilize her oxygen levels, it was decided yesterday that M would have
surgery this afternoon. The surgery will entail putting in a shunt
to assist with the flow of blood to her lungs. The surgery takes about
an hour and a half, not including all the prep and close time.
(somewhere around a total of 4 hours). M will go into the Cardiac
Intensive Care Unit, with the average hospital stay being approximately 2
weeks.
Unfortunately, that won’t be the end of J’s nightmare; as M will come home needing more monitoring, medications, and follow up care. She’ll still need two more surgeries and a lot more care. I cannot imagine how incredibly difficult this is on everyone involved.
Triplet B
Last month, a new-found friend of mine delivered her triplets at the hospital Seth works at. I packed up my preemie clothes for her and sent them in with Seth. I talked with her about feeding schedules and pumping and NICU survival tips. I squealed at the idea of visiting her beautiful girls. I can’t wait to meet them, really, but I’ve been waiting until some of the hubbub dissipates, because I remember what those early days were like and I wish some people had waited until I was really READY way back when.
Today, I called to talk to my friend and her mother answered the phone. Recognizing who I was, she told me that E was not home. In fact, E was back at the hospital with Triplet B. Poor B stopped breathing last night due to what they believe may be severe reflux. The small local hospital transferred B back to the big hospital where B was delivered and they’ve seen the episodes occur again as well. Severe reflux is, of course treatable. Unfortunately, according to E’s mother, it seems they think they may also be seeing some seizure activity as well. I didn’t get as many details on this, because at this point, E called in on the other line, so I didn’t get to finish talking. I’ll check in later.
This is not a good week for babies, and I’m just terribly heartbroken. I’m sure each one of these babies could use your extra thoughts and prayers today. I wish my words were more powerful, more adequate, more eloquent. But as insufficient as they are, I hope they convey how important these three little lives are. These babies deserve the world.
NOTE: Except for Bailey, I’m not posting anyone’s names because I wasn’t given permission to do so. I’m sorry if this obscures the readability, but the stories are important, all the same.
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