It's a little bit ironic... don't you think?

The week of Emerson Claire’s birthday haunts me every year as I can’t help but walk through the days that of my panic as my body failed to stay pregnant and our little miracle entered the world as my soul was paralyzed with fear yet enlightened with the only thing I could do…hope. As many NICU moms can relate, every year while planning to celebrate, a shadow casts over me as I recall the blood, uncertainty and helplessness we felt as I lost my fight to stay pregnant. The smokey California skies this weekend didn’t help me escape again this year...

Every year I walk through November 2015 day-by-day, with the PTSD temporarily creeping back into the aches of my heart that have healed with Emerson’s smile and progress but still hurt

  • November 11- finally 28 weeks, home from weeks of hospitalized bed rest, finally reunited with my Grace but living temporarily at my parents while the house we had just purchased is remodeled.

  • November 12th- picking out stains for our new hardwood floors when sudden excruciating pains overtake my abdomen. I call the doctor and they say I am probably fine but see me. They think it’s my body adjusting to being upright again. Tiny bones break in my feet having used them for the first time in months.

  • November 13th- I start bleeding and can’t get out of bed but too sheepish to go back to the doctor as they said I was fine yesterday…right?

  • November 14th evening- Blood and tissue is passing and I send a text to my MFM who tells me to rush to the ER. I am admitted and I get hooked up to dreadfully painful magnesium drip to prevent brain bleeds in Emery, meds to slow contractions while we try to get two rounds of steroids in for her lungs. Panic overwhelms the physical space as everyone rushes by with uncertain looks. I’m facing a placental abruption and my waters are leaking. I just remember so much tissue and blood, so much pain, and panic.

  • November 15th-  The neonatologist comes in and what may be one of the scariest moments of my life (and Grant’s, my parent’s and Grants’ mom who are gathered in the tiny delivery room.) She unemotionally rattles off all of our odds- for survival, for serious handicaps, and forewarns of the arduous NICU journey. We nod and try not to look at each other and hold it together. Tears well on the inside. Seconds later I can’t help it, I scream and the NICU team assembles in mere second, its truly marvelous Grant and I recall, a fluid team working together. They tell me to hold her in for 2 more minutes, and literally mean to stay pregnant for another 120 seconds. At 90 seconds I tell them I can’t anymore, holding my breath with my heart racing as I battle being unable to keep her in and protected anymore.

    The next 10 minutes are a blur as Grant and everyone hovers over her teeny limp, purple body- but I couldn’t see her then. Grant and the neonatologists whisk her to the NICU and I’m left alone in a bed of blood realizing that the nightmare I tried so hard to avoid all those weeks on hospitalized bed rest was happening- I was living the nightmare. And oddly - all alone.

    Grant was with the NICU team with my phone in his pocket, so no one came by to tell me if my 29 weeker was alive. May not sound like terribly long, but those 4 hours not knowing are etched in every ounce of my body with fear and guilt running through my blood of bringing a little girl into the world 11 weeks too early. It would be days before I could hold her, and when I finally saw her, my first thought was she looked like an uncooked purple pork tenderloin. Who thinks that the first time they see their child?

    With Emery overcoming her 6th battle of pneumonia of 2018 this week, its a reminder how a few extra weeks in the womb would have protected her and let those lungs and immune system grow.

    With so many beautiful congratulations as we announced the pregnancy of our little boy last week, many inquisitive friends also asked how this pregnancy would go with my history and if I’d be blogging. Between working on my doctorate and the two little girls at home, I wasn’t planning on it, but felt compelled to share at least the milestones of this journey.

    So here is the irony: this week, the week that washes over me like a cloud of inescapable soot, I have to have a fairly invasive surgery to stay pregnant... ironic that it’s the same week 3 years ago my body failed to do so. It could very well be the same day.

    We go in for pre-op tomorrow, Tuesday, November 13th up in San Francisco with Dr. Michael Katz- a lauded MFM who has some of the highest success rates in the world and will schedule the surgery for sometime the following 72 hours... which encompasses Emerson’s birthday. With this preventative TVCIV cerclage, timing is of the essence as they have to move my bladder and other internal organs to stitch up while keeping the growing baby’s sac small and safe from incision. 

    I remind my self we have a happy ending with Emerson and live life to the fullest each and every day. This week, while we celebrate our sweet miracle baby’s third birthday and try to forget how we lost our battle to stay pregnant longer, we are taking literally the biggest steps we can to stay pregnant this time around with our little boy to complete our family. Wish us luck!

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Eye on the Prize: The endless eye exams for Preemies

Having just gone through all of the routine newborn exams with Grace who is now just 17 months old, one of the most eye-opening (pun intended) things about bringing home a preemie is how many eye exams they face. 

While in the NICU, Emerson underwent weekly exams for Retinopathy of Prematurity (ROP) . Typically the exams progress until 50 weeks, but we were fortunate enough to work with Dr. Moshfeghi at Stanford's Byers Eye Institute to rule out ROP at just 40 weeks. This came as a huge relief as many premature babies have difficulty with their vision...and having a close up of her baby blues was an added bonus. 

While it seems we have graduated from the ROP screenings (fortunately as the dilation + exams + wait time equated to about 2 hours) we now have been referred to Lucille Packard Children's Hospital (where we were admitted this weekend) to work with opthamologists to see if she will need glasses immediately to correct her vision and to look for lazy eye (amblyopia/strabismus). Again, as Emme has had well over a dozen eye exams in her short 11 weeks, I find fascinating that Grace still hasn't had one! 

 

Back in the hospital but doing great!

Being home for two weeks, Emme has been doing great so far with no major spells- we have been very very fortunate. Then last night around 6 we started noticing she was having a very difficult time breathing- struggling for air and wheezing. While it wasn't anything overly alarming, we called out pediatricians nurses line which had us go to PAMF's Pediatric Urgent Care.  

Once hooked up to monitors, we saw she was having periods of oxygen dipping into the 86 range, so the on call pediatrician has us directly admitted at Stanford's Children's Hospital. Her little cough seemed to be taking everything out of her. Although she has had the first round of the vaccine Synergis for RSV, we explored all viral options and did swab testing. 

Since she was due tomorrow to be born(!!) they treat her extra carefully, though at this time we are thinking it is just a viral cold- nothing we can treat with antibiotics- so just having her monitored to ensure the breathing struggle doesn't require oxygen/intubation. The one highlight was finding out she now weighs 8.2lbs!! Can you believe our little Preemie who dropped down to 2lbs is now over 8lbs just 11 weeks later?!? We joke I am serving up buttermilk :)

Packard vs El Camino's NICUs is a blog post I'll save for another day- aesthetically as different as different can be (I'd take El Camino any day!) That said- the one universal quality is NICU doctors and nurses still amaze me with their brilliance and bedside manner- kind, compassionate people whom I truly believe put themselves in the shoes of the parents to help educate and make decisions during scary times.   

Now that we know it is nothing more serious and have been able to rule out a lot, will likely be discharged tonight to go home (they don't allow parents to fall asleep at the bedside of the babies so being somewhere I can rest my head would be greatly appreciated at this point!)  

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It is surprising to me how emotionally removed Grant and I have become from hospital procedures- we know the drill and move forward asking questions about care, but without tears of fear and frustration flowing dramatically  as we now know as parents, you do what you have to do and count blessings that we are in the epicenter of world class care.  

It is like a drill- that even the extended family has become part of- Pat and Simone came over to watch sleeping Grace as we headed to Urgant Care, by the time we were admitted they'd taken Kellydog back with them and my mom was in her Jammies in our guest room tending to Grace. With Grace taken care of, we could focus on Emme's immediate needs. Talk about blessed...

Heck, the toughest part of this whole visit has been me texting Grant trying to get him out of bed at home to bring my pump parts so I can pump as its been 12 hours and I am in a pain only other breastfeeding mamas would understand! Still waiting... he's not a morning person but Emme and I sure are :) 

 

 

Preemie Eye Exams - ROP

As a parent, one of the toughest experiences you face is seeing your child poked, prodded and in pain. While of course they assure you the child isn't hurting, hearing your little one scream during the weekly eye exams for preemies goes to the top of the list of difficult challenges. 

On Tuesday we went to visit Doctor Moshfeghi at Stanford's Byers Eye Institute - the exam itself only takes about 5 minutes, but the process is excrutiating - check out those tools!  

Dr M is checking for ROP - Retinopathy of Prematurity. Because Emme was born before 32 weeks, she is at higher risk to suffer blindess/ vision issues related to ROP, but because she was a healthy weight of 3lbs 5 ounces at birth, that risk decreases. 

According to the NIH, there are multiple stages of ROP. So far, Emme's results have come back as "immature/inconclusive" which is good - not showing any signs of ROP. 

Are there different stages of ROP?
Yes. ROP is classified in five stages, ranging from mild (stage I) to severe (stage V):
Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and “plus disease” develops, treatment is considered. “Plus disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision.
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