Our Normal
This week Neriyah went from being the lone princess in the NICU to sharing her space with two other babies. One of the families had taken their little boy home healthy but ended up in the NICU because the mom was having some trouble breastfeeding which resulted in her baby having jaundice. These sweet first-time parents were beside themselves having to leave their little guy. They asked numerous questions and even tried to sleep in the lobby just to be nearby...my heart absolutely broke for them as I realized in watching their tears that this place was not their "normal" as it had become for us. We are so accustomed to being in this space that we are able to reattach monitor leads, use the scale to weigh our babe (in both lbs and grams), take her temperature, and find any miscellaneous supply on demand. More importantly, we have felt like partners with the care providers from the nurses to the Neonatologists.
Breaking up is hard to do...
Tomorrow we will likely bring our little girl home! After I finished the feeding tonight, I realized that there were NICU staff that I may not see again. As I said goodbye to Neriyah's nurse, Ricci, I began to cry. I realized these women have become part of our family...and leaving them is going to be bittersweet.
Eating like a Champ
Over the course of the last few days the NICU nurses have been working hard to feed our daughter to ensure that she comes home before the New Year. First, her feeding tube was removed which allowed for every feeding to be either by breast or bottle...a huge step! Neriyah was also lowered off her high-calorie breast milk fortifier to a 22 cal. version that more closely mimics the nutritional value found in straight breast milk. The reduction was made to see if she would still gain weight...and she has done very well...now weighing in at just over 5 lbs.
Call Me Anytime
I knew they were thinking about sending her home when they performed the hearing test as this is a standard assessment before discharge. They also informed us that they were planning to do the VCUG to get a better understanding of her kidney issue and a bone X-Ray (to see if there was any calcium on her bones which could be an indicator of a skeletal syndrome). As I sat with Neriyah yesterday, knowing that these tests were scheduled for this morning, I couldn't shake that internal sense that she did not need all of this testing and that we needed to talk to the doctor about her exposure to radiation before moving forward. After talking with my mom and a friend whose son has had kidney issues, I had a better sense of clarity about the questions that I needed to resolve prior to moving forward. I called the NICU and requested to talk with Dr. Jacinto, the Neonatologist. They called back and gave me her HOME phone number...oh gosh...her home number...right...yep...I called. Dr. Jacinto answered enthusiastically "Hi Michelle!" and begins telling me how wonderfully my daughter is doing and then answers my questions about the upcoming tests and agrees that the bone scan (not ordered by her) was NOT necessary and called the NICU to cancel. Before we got off the phone, the doctor says "now you have my home number, you can call me anytime." Love the care we have received!
All Clear
The Kidney test report came back tonight...clear! Not sure what has caused her left kidney to carry a bit of fluid (making it slightly larger than the right) but hopefully this is something that she will simply outgrow.
Every Request...Answered
We want to thank each of you again for the time that you have committed to praying for our daughter. We are in awe at the way in which Neriyah has been healed...and we're pretty sure our doctors are wondering "what the heck happened?" I think the explanation for this case is going to be a tough one to find in the medical books.
With Love and Grateful Hearts,
The Kings
Monday, December 28, 2009
Wednesday, December 23, 2009
Baffled
Neriyah had two tests this week and we are once again filled with thanksgiving for each of you that have offered prayers for her health.
The first was a second ultrasound on her kidney's. The results came back showing that she still has an enlarged left kidney (hydronephrosis...swelling of kidney due to backup of urine). The doctor's are not sure what is causing the enlargement as her output (peeing) has been great. They will perform another test called a voiding cystourethrogram (VCUG) where they will basically insert a catheter, dye, and use an x-ray to watch her empty her bladder. There does not seem to be great urgency for this test and we may have it done when she is an outpatient at a children's hospital that specializes in pediatric nephrology (kidneys). The neonatologist was encouraged that although her left kidney is enlarged that it has not grown larger since her birth.
Her second big test was a full-brain MRI. I mentioned feeling a bit unsettled about this one. In talking with my cousin, she asked "are you worried that after getting so many good reports that this one might come back with something?"...I think she hit my fear...that this might be the test that showed what all the doctors have been looking for...something...anything...to explain why my daughter had a two-vessel umbilical cord, a flattened nasal bridge, and high amniotic fluid.
The preliminary results came back...all of her brain structures are intact and look great! The only minor showings were two subdural hematomas. Both were very small and are not causing any pressure on the brain. The Neonatologist believes that they were likely caused during delivery and that the blood will reabsorb in time. This doc...like all that have examined her are so incredibly baffled as to why they cannot find "what is wrong with her"...All I know is that there have been a great number of people praying on her behalf and if there was something "wrong" we may never fully know...but we trust that we have a God that heals beyond our imaginations and has the ability to leave the "concrete, scientific community" scratching their heads.
Today was a great feeding experience. I was able to put her to breast for some practice and then fed her nearly an entire bottle (about 40 cc's) even while she was sleepy from the meds they used prior to the MRI! She is weighing in at about 4 lbs. 12 ounces...only a few ounces until she makes the 5 lb. club...which is about the range that they send babes home. She will also need to consistently feed vs. being gavaged...so we'd still love your prayers that this takes off in the next week.
Stay warm and drive safe MN friends! We hear the snow is on its way.
God's Peace,
The Kings
The first was a second ultrasound on her kidney's. The results came back showing that she still has an enlarged left kidney (hydronephrosis...swelling of kidney due to backup of urine). The doctor's are not sure what is causing the enlargement as her output (peeing) has been great. They will perform another test called a voiding cystourethrogram (VCUG) where they will basically insert a catheter, dye, and use an x-ray to watch her empty her bladder. There does not seem to be great urgency for this test and we may have it done when she is an outpatient at a children's hospital that specializes in pediatric nephrology (kidneys). The neonatologist was encouraged that although her left kidney is enlarged that it has not grown larger since her birth.
Her second big test was a full-brain MRI. I mentioned feeling a bit unsettled about this one. In talking with my cousin, she asked "are you worried that after getting so many good reports that this one might come back with something?"...I think she hit my fear...that this might be the test that showed what all the doctors have been looking for...something...anything...to explain why my daughter had a two-vessel umbilical cord, a flattened nasal bridge, and high amniotic fluid.
The preliminary results came back...all of her brain structures are intact and look great! The only minor showings were two subdural hematomas. Both were very small and are not causing any pressure on the brain. The Neonatologist believes that they were likely caused during delivery and that the blood will reabsorb in time. This doc...like all that have examined her are so incredibly baffled as to why they cannot find "what is wrong with her"...All I know is that there have been a great number of people praying on her behalf and if there was something "wrong" we may never fully know...but we trust that we have a God that heals beyond our imaginations and has the ability to leave the "concrete, scientific community" scratching their heads.
Today was a great feeding experience. I was able to put her to breast for some practice and then fed her nearly an entire bottle (about 40 cc's) even while she was sleepy from the meds they used prior to the MRI! She is weighing in at about 4 lbs. 12 ounces...only a few ounces until she makes the 5 lb. club...which is about the range that they send babes home. She will also need to consistently feed vs. being gavaged...so we'd still love your prayers that this takes off in the next week.
Stay warm and drive safe MN friends! We hear the snow is on its way.
God's Peace,
The Kings
Monday, December 21, 2009
Groundhogs Day
There is something a bit "Groundhog's Dayish" about life right now...my routine consists of pumping, hanging out with Gabe, and making multiple trips per day to the hospital. Each day I wake up and I have the same list of to do's...laundry (looks so manageable when I go to bed at night but getting it done escapes me nearly every day), thank you notes (if you're reading this and have given us a gift...we are so grateful and cannot wait to connect with a card), washing dishes (the only consistently washed item is my breast pump equipment), and going to the grocery store (we've been out of milk for a couple of days but usually remember around 11 pm with no energy to make another outing). I know we will settle in soon but some days (like today) just feel too short and never ending all at the same time.
More Tests
I know I thank this crew often for praying but really we are so thankful for the prayer time that each of you spend making requests on behalf of our daughter. Neriyah has a renal ultrasound (kidneys) tomorrow. Would love for you to pray that all continues to show health in that area. Wednesday she will have a full MRI of her brain. We have known for sometime that the doctors planned to do this before she was discharged but there is something about the reality of this test that as a mommy again brings me to my knees.
Updates on Eating and Temp
For the most part, Neriyah is eating well (this really started the day after we asked for prayer so thank you!). She only gets every other feeding by bottle and the others are gavaged. Some days are good...others are fair. When they are good she finishes her whole feed...but there are definitely those that she tires out on. We know that she will not come home until she consistently nipples all of her feedings so this is still one of our greatest requests.
We have been amazed by the change in her temperature...she is now consistently holding at the right temp! (another prayer answered within a day).
Now that Neriyah is in an open crib we are able to dress her in real clothes...they look incredibly small before we put them on...but sure enough they are still too big! The picture posted is in her first preemie outfit.
We will keep you posted on the results of the tests from this week. Grateful as always for your continued prayers.
Love,
The Kings
Thursday, December 17, 2009
Making Progress
Mini-milestones
All of the baby books are designed to help parents remember to capture the significant markers in a child's life (smiling, crawling, 1st haircut)...funny when you have a preemie there are a great deal of mini-milestones to add. Here's a few from our week.
Lunch Time
Neriyah has begun feeding by bottle two times per day. It is not a perfect science as some days she is more sleepy than others requiring a gavage (feeding through the tube) but she is making good attempts which is a great sign. Today, I was able to bottle feed her during my first visit (she didn't take much and ended up being gavaged). During my second stop, the nurse had me put her to breast while she was being gavaged to begin giving her the association with breast and milk. It is difficult to articulate how much I am looking forward to breastfeeding. I remember this being some of my favorite bonding moments with Gabriel. And to be quite honest...the mechanical breast pump lacks the same inspiration at 2 a.m.
Looking less high-tech
Neriyah's first week in the NICU required that she be hooked to numerous lines responsible for everything from breathing to feeding. She was beginning to rival the hook-ups of a state-of-the art stereo system. She is now down to just a feeding tube as yesterday, they removed her PICC line because her arm began to swell. We were told it was not an infection and that the line was no longer a necessity. This was a great step as it allows her to be more mobile for us to hold and it reduces her risk of infection (each time the PICC was opened it allowed room for germs to enter).
Temperature Control
Whether you live in frosty Minnesota or Sunny California...everyone loves to talk about the weather. My daughter must have wanted in on the conversation as her body temp dipped this past week a couple of times causing some question as to whether she would be able to regulate her own body. As of the past couple of days, her temperature has been steady (thank you for praying on this one) which means that she will be moved to an open crib (versus the isolette incubator).
Our Live-In Help
We have been so fortunate to have great help in this time of travel back and forth to the hospital. My mom just returned to Minnesota on Tuesday morning after being here for Neriyah's birth and my aftercare. We are hoping she can return again this winter when our daughter is home. Our dear friend Elizabeth flew out on Sunday and just returned home (also a MN girl) today. Having her here allowed us to focus on our hospital trips, pumping, and generally getting settled as she provided consistent care for Gabriel.
Big Brother
Some of you have asked how Gabriel is doing in the midst of all that has gone on in the past couple of weeks. Overall, I would say he is doing well. There have been some moments where I can see that he is anxious about where mom or dad has gone (even if we are only in the other room). He is still a bit confused about this baby sister he keeps hearing about. He was used to the idea of her being in my tummy but now is able to see her in pictures where daddy or mommy are holding her...hmmm. He is very excited about pumping and even has his own set of flanges with bottles attached so he and mom can pump together (not sure what he is getting as he usually places them on his belly...maybe mac-n-cheese?). To attempt to keep things "normal" we bought a Christmas tree and a Polar Express train that runs underneath. Gabriel wakes up asking to play "chooch" every morning and loves to take our breakable ornaments off the tree and throw them on the floor (I guess that is what you get for decorating with items that look like balls...little boys will treat them as such)
Thank you for keeping our family in your prayers. We cannot wait to take her home and realize that feeding well is going to be the determining factor of when that happens.
Hugs,
The Kings
The Kings
Sunday, December 13, 2009
The Best Possible News for Today
We were told a couple of days ago that the Geneticist would be visiting Neriyah today. It would have been nice to have at least been given a window...you know like the cable guy or appliance repair folks give...instead we were told to stay nearby to ensure that we could come to the hospital on a moments notice.
I headed to the hospital for the 11 o'clock feeding. As I walked in the door, the nurses introduced me to Dr. Zadeh the Geneticist who had also just arrived. Wheww! Amazing timing. I was able to give her a family history, which she genogramed, as well as my health summary. She then proceeded to exam our daughter. I'm sure I was slightly awkward during this time as I was feeling anxious...uncertain whether to rock in my chair (to clarify it was a rocking chair...I wasn't quite at straight jacket levels of anxiety) or stand and watch. I finally settled on rocking and praying for wisdom and clarity for the doctor as she measured, scoped, and listened to our baby.
When she finished she told me that we could rule out Mosaic Down Syndrome. Our daughter does NOT have Down Syndrome. She went on to say that she was thinking of a few other syndromes that involve mid-line facial hypoplasia (a fancy way of saying our daughters nose is pretty darn flat). All of the syndromes that she covered with me she had reasons to believe that they were NOT good fits.
I had sent a text to Jeremey around 11:30 am to see if he was done preaching. Within 15 minutes he arrived at the hospital and was able to meet the doctor, get an update and ask questions. The timing of the day could not have been better. He clarified with the doctor that the syndromes on her short list do NOT involve mental retardation but rather involve skeletal issues.
The only areas of concern for the doctor at this time is waiting to see if Neriyah begins to feed on her own and maintains a good temperature. Currently, she is being gavaged (the central line goes into her stomach) for her feedings versus nippling a bottle. We are hoping she will be up to full-feedings soon and will be able to try a bottle again (they tried before but she tired out). Last night and today, Neriyah's temperature was also a bit low. Both of these areas are considered milestones and if met, we continue moving forward with little concern. If they are unmet, more testing will be done as these could be indicators of an issue in her brain that could be a result of small chromosome deletions. Testing for the small chromosome deletions requires far too much blood at this point which would compromise our efforts to see her grow and remain healthy.
Currently, our plan is to meet with the Geneticist again when Neriyah is 6-months-old to see how she is developing. We will stay on this path unless our daughter does not meet these first milestones of feeding and temperature regulation.
We know so many of you have been praying with incredible boldness. We ask that you would continue in this vain...we trust that there has been much healing already done that we will never fully comprehend. I think back to our delivery day and the words of the neonatalogist. She said to us, "She is likely Downs, given her eye spacing, lowered ears, and nasal structure. But there is always that 1% chance that she is not." We took 1% to mean that God still had room to heal. We're learning a great deal about not shutting God out just because "science" and "medicine" are involved.
We would love for you to pray for feedings and her temperature.
Much love,
The Kings
I headed to the hospital for the 11 o'clock feeding. As I walked in the door, the nurses introduced me to Dr. Zadeh the Geneticist who had also just arrived. Wheww! Amazing timing. I was able to give her a family history, which she genogramed, as well as my health summary. She then proceeded to exam our daughter. I'm sure I was slightly awkward during this time as I was feeling anxious...uncertain whether to rock in my chair (to clarify it was a rocking chair...I wasn't quite at straight jacket levels of anxiety) or stand and watch. I finally settled on rocking and praying for wisdom and clarity for the doctor as she measured, scoped, and listened to our baby.
When she finished she told me that we could rule out Mosaic Down Syndrome. Our daughter does NOT have Down Syndrome. She went on to say that she was thinking of a few other syndromes that involve mid-line facial hypoplasia (a fancy way of saying our daughters nose is pretty darn flat). All of the syndromes that she covered with me she had reasons to believe that they were NOT good fits.
I had sent a text to Jeremey around 11:30 am to see if he was done preaching. Within 15 minutes he arrived at the hospital and was able to meet the doctor, get an update and ask questions. The timing of the day could not have been better. He clarified with the doctor that the syndromes on her short list do NOT involve mental retardation but rather involve skeletal issues.
The only areas of concern for the doctor at this time is waiting to see if Neriyah begins to feed on her own and maintains a good temperature. Currently, she is being gavaged (the central line goes into her stomach) for her feedings versus nippling a bottle. We are hoping she will be up to full-feedings soon and will be able to try a bottle again (they tried before but she tired out). Last night and today, Neriyah's temperature was also a bit low. Both of these areas are considered milestones and if met, we continue moving forward with little concern. If they are unmet, more testing will be done as these could be indicators of an issue in her brain that could be a result of small chromosome deletions. Testing for the small chromosome deletions requires far too much blood at this point which would compromise our efforts to see her grow and remain healthy.
Currently, our plan is to meet with the Geneticist again when Neriyah is 6-months-old to see how she is developing. We will stay on this path unless our daughter does not meet these first milestones of feeding and temperature regulation.
We know so many of you have been praying with incredible boldness. We ask that you would continue in this vain...we trust that there has been much healing already done that we will never fully comprehend. I think back to our delivery day and the words of the neonatalogist. She said to us, "She is likely Downs, given her eye spacing, lowered ears, and nasal structure. But there is always that 1% chance that she is not." We took 1% to mean that God still had room to heal. We're learning a great deal about not shutting God out just because "science" and "medicine" are involved.
We would love for you to pray for feedings and her temperature.
Much love,
The Kings
The Latest on Baby Neriyah
Neriyah continues to do well and is in the NICU at Orange Coast Memorial in Fountain Valley. She is off all breathing helps (originally on a ventilator then oxygen). A PIC line was placed yesterday to give the staff more access to her in terms of feedings, blood draws, etc. This will prevent her from having to be stuck as frequently as traditional IV lines only last a short time (1 to 10 days). Specfically, we are praying that she does not get an infection from having the PIC.
We received our preliminary report back on Thursday regarding her chromosomes. She DOES NOT have Trisomy 21 (traditional Down Syndrome). She has all 46 chromosomes!! The testing did not cover another form of Down Syndrome which is called Mosaic Downs nor did it cover small cell replacement. Essentially, what this means is that she could still have Down Syndrome or another chromosomal issue but instead of having an extra chromosome it would be instead due to issues with the chromosomes present. Tomorrow, the Geneticist is coming to the NICU to exam our daughter and we are hoping to get some face time with her to see what testing she recommends.
We are continuing to pray that she has a full-mind. Her body is checking out well...strong heart, kidney's, great breathing, etc. We would love your continued boldness to pray with us for health for all of her systems.
In the last two days, I have had a chance to not only hold her in her bed but to kangaroo with her...such fun to have her skin to skin. Her vitals come into the most beautiful rhythms when she is on my chest. Even if it is only one-hour each day, I LOVE this time!
Off to bed! I will keep you posted as things continue to change.
Hugs!
M
We received our preliminary report back on Thursday regarding her chromosomes. She DOES NOT have Trisomy 21 (traditional Down Syndrome). She has all 46 chromosomes!! The testing did not cover another form of Down Syndrome which is called Mosaic Downs nor did it cover small cell replacement. Essentially, what this means is that she could still have Down Syndrome or another chromosomal issue but instead of having an extra chromosome it would be instead due to issues with the chromosomes present. Tomorrow, the Geneticist is coming to the NICU to exam our daughter and we are hoping to get some face time with her to see what testing she recommends.
We are continuing to pray that she has a full-mind. Her body is checking out well...strong heart, kidney's, great breathing, etc. We would love your continued boldness to pray with us for health for all of her systems.
In the last two days, I have had a chance to not only hold her in her bed but to kangaroo with her...such fun to have her skin to skin. Her vitals come into the most beautiful rhythms when she is on my chest. Even if it is only one-hour each day, I LOVE this time!
Off to bed! I will keep you posted as things continue to change.
Hugs!
M
Saturday, December 12, 2009
Neriyah Scott King
Choosing a name for our little girl was a far greater task than naming our son, Gabriel. In fact, Gabriel's name came to me in a dream when I was trying to guess the name of our friends' unborn baby boy...it turned out my dream was not accurate for their child but it was the perfect fit for our little boy. His name means "The mighty warrior of God."
For our daughter, I looked at cutsie names, my husband looked for meaning, and together Jeremey and I spent hours perusing the Internet naming sites, going through each letter of the alphabet...sounding out names and finding ways for a 4th grader to make fun of each of one.
I would try to narrow our list by having each of us choose our top three...each time we did this our top three were different and so our giant list remained. Then one night, we had some space to just talk about our little girl, and Jeremey brought up the name Neriyah. I'm sure it had been on "his list" before but this time I heard it in a new way. I heard the meaning "burning lamp of God" and knew that these were the words that I wanted spoken over her life.
It was shortly after, we picked her name, that we found out that she may have Down Syndrome. Together, we reaffirmed that no matter who she is that our greatest hope is that her life will reflect the meaning of her name.
Some of you may have wondered how we chose her middle name, Scott. In a previous post, I mentioned that my parents lost their little boy, my brother, in the 39th week. Growing up, we went to his grave. On the stone it reads "Baby Boy Pearson." As I got older, it was important to me to understand why my brother was left unnamed. I found out that in fact he was given a name but in the 70's it wasn't a common practice to place the name on the headstone. As Jeremey and I discussed names (before we knew boy or girl) we were clear that we wanted my brother's name for the middle name of our child to carry forward an oral tradition of his memory.
And so this is the story of how...Neriyah (Burning light of God) Scott (in memory of my brother) King (although she'll be our princess) got her name.
For our daughter, I looked at cutsie names, my husband looked for meaning, and together Jeremey and I spent hours perusing the Internet naming sites, going through each letter of the alphabet...sounding out names and finding ways for a 4th grader to make fun of each of one.
I would try to narrow our list by having each of us choose our top three...each time we did this our top three were different and so our giant list remained. Then one night, we had some space to just talk about our little girl, and Jeremey brought up the name Neriyah. I'm sure it had been on "his list" before but this time I heard it in a new way. I heard the meaning "burning lamp of God" and knew that these were the words that I wanted spoken over her life.
It was shortly after, we picked her name, that we found out that she may have Down Syndrome. Together, we reaffirmed that no matter who she is that our greatest hope is that her life will reflect the meaning of her name.
Some of you may have wondered how we chose her middle name, Scott. In a previous post, I mentioned that my parents lost their little boy, my brother, in the 39th week. Growing up, we went to his grave. On the stone it reads "Baby Boy Pearson." As I got older, it was important to me to understand why my brother was left unnamed. I found out that in fact he was given a name but in the 70's it wasn't a common practice to place the name on the headstone. As Jeremey and I discussed names (before we knew boy or girl) we were clear that we wanted my brother's name for the middle name of our child to carry forward an oral tradition of his memory.
And so this is the story of how...Neriyah (Burning light of God) Scott (in memory of my brother) King (although she'll be our princess) got her name.
Delivering at 33 Weeks
The Week Without a Beginning or an End
This has been the longest, shortest week of our life. It was a week ago yesterday that we went to have me checked out for a severe headache. The first trip to the hospital last Friday afternoon our health providers suspected a migraine (although I have had migraines in my life and this did not feel the same...I followed their lead). We had the baby monitored in labor and delivery and then we were sent to our primary care physicians office for a "migraine consult." You can probably imagine the horror on the doctor's face when he saw a pregnant woman being wheeled from the hospital to his office. He agreed to give me Imitrex to treat my headache but was very clear that if the headache returned it was NOT a migraine and we were to call our OB again. Within a couple of hours of returning home, my headache returned with a vengeance. For a moment, I thought about waiting until morning to call again but my symptoms were too pronounced to ignore (by this point I was having a great deal of difficulty seeing clearly out of my right eye). After calling our OB office, we headed to the hospital.
The Bulldog of Labor and Delivery
When we arrived at the hospital, we were met by Mo (short for Maureen), an RN with 40 years of nursing experience under her belt. She greeted us with the confidence of a bulldog saying "come on honey we're going to get this figured out." Things began moving quickly after MO's assessment. She was convinced I had pregnancy-induced hypertension (PIH) and that something needed to be done to save both me and the baby (apparently I had slits for eyes because of the swelling in my face and the lines on my hands, even knuckles had disappeared under the fluid). She called Dr. Sun (the OB on call from my med group) and within a short time, an IV was placed and I was started on magnesium (magnesium slows the central nervous system preventing stroke, life-threatening convulsions, etc.) During this time, they also gave me a steroid shot to develop our baby's lungs. Mo was right on...by morning my urine (which had been clear) was filled with protein. The acceptable levels range from 0-14...I was now at 23.
Living Between Worlds
Night flowed into day, we were trying to buy time. The magnesium put me in a state where I felt like I was living between this world and the next. I had cloths soaked in ice on my neck and over my eyes. There were times that it felt like my body was burning from the inside out. We called in Karen Wagner to pray as she brings a spirit of peace and had walked with us during Gabriel's birth experience. Her presence helped ease my anxious heart.
The Headache Returns
Dr. Sun came Saturday morning with my giant medical record binder and tried to discern next steps...still hoping we might make it to mid-week. Shortly after we consulted with her, my headache returned, now on the left-side of my head, piercing my left-vision. Time had run out, it was clear that the induction process needed to begin. My exam showed that my cervix was still completely closed requiring a cervical gel to begin dissolving those layers. They also gave me a narcotic to ease my head pain...I'm not sure how to describe what happened to me but I remember screaming for Jeremey and then losing control of my body. When I came down, Jeremey was apologizing to the doctor for the grip that I had placed on her hand. Note for the binder...Michelle and narcotics...not the best mix.
Balancing Fluids
My mom arrived Saturday night just in time for them to start the Potocin (a drug that helps with creating stronger contractions) Ironically, Magnesium and Poticin have nearly opposite purposes (Magnesium slows the system including contractions....while Poticin is trying to get labor under way). During labor, I was on a fluid restriction to attempt to prevent a fluid overload after delivery that might comprise my heart and lungs. The issue with restricting fluids during labor is that they are used to optimize the baby's stats. Neriyah's heart began showing less accelerations and variance in pattern which became a concern so they decided instead of fluids to try an oxygen mask on me for the duration of labor. The oxygen, along with the sound of Jeremey's voice, seemed to bring her heart rate back into a safe zone. We had been praying that there would still be enough time for a second steroid shot for her lungs...and as certainly as we prayed...it was able to be done.
Water Breaking Genius
I am admittedly pretty fuzzy about some of the details. I was convinced that I didn't sleep during this entire span, but come to find out I was in and out of coherency from the time they started me on Mag. Sunday, another doctor from my group was on-call, Dr. Sansone. They waited until the Potocin dilated me to 2 to break my water. Breaking my water was a bit of an art as I had so much fluid and Neriyah was still floating high. If they were to break it quickly, the gush could push the umbilical cord out before her head was in the canal. This would have led to an emergency C-section. Thankfully, Dr. Sansone has been practicing for 25 years and creatively decided to use a needle to slowly drain my fluid and allow the head to gently come into place. The nurses reflected that they had never seen something like this done...talk about the right doctor for the job.
The A-Team
After breaking my water, I dilated quickly to a 6. The entire team was aware that Gabriel came quickly and that not being ready may put our baby in danger....so they stayed. The doctor never left the hospital grounds and the Neonatalogist (special baby doctor) decided not to wait to be called but came to our room and prepared herself to wait no matter how long it took (the selection and hearts of these docs was certainly another answer to prayer).
Screaming
Within an hour, I was dilated to 10 and ready to push. All the docs, NICU nurses, and respiratory therapists were assembled. It took me two contractions and she was out....screaming! I cried when I heard her cry...overwhelmed that she was breathing. I think the delivery doc thought I was nuts because I just kept saying...she's breathing...she's crying....she's alive. Dr. Sansone said, "what did you expect?"...if only she knew. The screaming cry of our little girl was our greatest prayer answered. Just for the record, she was born on Sunday, December 6th at 6:21 PM weighing 3 lbs 15 oz. and 17 inches long.
One Kiss
I got to kiss my little girl before they rushed her to the NICU. This was the last time I would touch her until Monday night around 8 pm. Unfortunately, I was too sick to leave my bed and needed to remain on Mag for a full 24-hours after her birth. Seeing my little girl for the first time was both an amazing and overwhelming experience. At the sight of her tubes and wires, I struggled with guilt as I felt like my body had failed her and now felt quite helpless as there was little, other than pumping breast milk, that I could do to serve her.
Plastic
For the next couple of days, I remained in the hospital because my blood pressure was quite high. Coming off the Mag made me realize just how terrible it really is to sleep on a plastic mattress with flat pillows...oh and did I mention I may never again be able to have a suitable meal of meatloaf and turkey?...also potentially made of plastic. There are just some things that a hospital should take off their menu.
Going Home
I was released on Wednesday night and continued into Thursday to struggle with rising blood pressure numbers. This made traveling to the hospital difficult as I was seeing star bursts in front of my eyes. I knew I needed to rest but this is tough for a mama to do when she wants so desperately to be near her baby. I was more than grateful to be home as I had only had glimpses of Gabriel in all those days (I was wheeled to the lobby a couple of times to see him as he could not enter the hospital with the H1N1 precautions) and of course sleeping in my bed was incredible.
I'll close this post and write a couple more to give you the story of her name and the very latest updates on her health.
For those of you that have been praying...thank you seems insufficient.
All our love,
The Kings
This has been the longest, shortest week of our life. It was a week ago yesterday that we went to have me checked out for a severe headache. The first trip to the hospital last Friday afternoon our health providers suspected a migraine (although I have had migraines in my life and this did not feel the same...I followed their lead). We had the baby monitored in labor and delivery and then we were sent to our primary care physicians office for a "migraine consult." You can probably imagine the horror on the doctor's face when he saw a pregnant woman being wheeled from the hospital to his office. He agreed to give me Imitrex to treat my headache but was very clear that if the headache returned it was NOT a migraine and we were to call our OB again. Within a couple of hours of returning home, my headache returned with a vengeance. For a moment, I thought about waiting until morning to call again but my symptoms were too pronounced to ignore (by this point I was having a great deal of difficulty seeing clearly out of my right eye). After calling our OB office, we headed to the hospital.
The Bulldog of Labor and Delivery
When we arrived at the hospital, we were met by Mo (short for Maureen), an RN with 40 years of nursing experience under her belt. She greeted us with the confidence of a bulldog saying "come on honey we're going to get this figured out." Things began moving quickly after MO's assessment. She was convinced I had pregnancy-induced hypertension (PIH) and that something needed to be done to save both me and the baby (apparently I had slits for eyes because of the swelling in my face and the lines on my hands, even knuckles had disappeared under the fluid). She called Dr. Sun (the OB on call from my med group) and within a short time, an IV was placed and I was started on magnesium (magnesium slows the central nervous system preventing stroke, life-threatening convulsions, etc.) During this time, they also gave me a steroid shot to develop our baby's lungs. Mo was right on...by morning my urine (which had been clear) was filled with protein. The acceptable levels range from 0-14...I was now at 23.
Living Between Worlds
Night flowed into day, we were trying to buy time. The magnesium put me in a state where I felt like I was living between this world and the next. I had cloths soaked in ice on my neck and over my eyes. There were times that it felt like my body was burning from the inside out. We called in Karen Wagner to pray as she brings a spirit of peace and had walked with us during Gabriel's birth experience. Her presence helped ease my anxious heart.
The Headache Returns
Dr. Sun came Saturday morning with my giant medical record binder and tried to discern next steps...still hoping we might make it to mid-week. Shortly after we consulted with her, my headache returned, now on the left-side of my head, piercing my left-vision. Time had run out, it was clear that the induction process needed to begin. My exam showed that my cervix was still completely closed requiring a cervical gel to begin dissolving those layers. They also gave me a narcotic to ease my head pain...I'm not sure how to describe what happened to me but I remember screaming for Jeremey and then losing control of my body. When I came down, Jeremey was apologizing to the doctor for the grip that I had placed on her hand. Note for the binder...Michelle and narcotics...not the best mix.
Balancing Fluids
My mom arrived Saturday night just in time for them to start the Potocin (a drug that helps with creating stronger contractions) Ironically, Magnesium and Poticin have nearly opposite purposes (Magnesium slows the system including contractions....while Poticin is trying to get labor under way). During labor, I was on a fluid restriction to attempt to prevent a fluid overload after delivery that might comprise my heart and lungs. The issue with restricting fluids during labor is that they are used to optimize the baby's stats. Neriyah's heart began showing less accelerations and variance in pattern which became a concern so they decided instead of fluids to try an oxygen mask on me for the duration of labor. The oxygen, along with the sound of Jeremey's voice, seemed to bring her heart rate back into a safe zone. We had been praying that there would still be enough time for a second steroid shot for her lungs...and as certainly as we prayed...it was able to be done.
Water Breaking Genius
I am admittedly pretty fuzzy about some of the details. I was convinced that I didn't sleep during this entire span, but come to find out I was in and out of coherency from the time they started me on Mag. Sunday, another doctor from my group was on-call, Dr. Sansone. They waited until the Potocin dilated me to 2 to break my water. Breaking my water was a bit of an art as I had so much fluid and Neriyah was still floating high. If they were to break it quickly, the gush could push the umbilical cord out before her head was in the canal. This would have led to an emergency C-section. Thankfully, Dr. Sansone has been practicing for 25 years and creatively decided to use a needle to slowly drain my fluid and allow the head to gently come into place. The nurses reflected that they had never seen something like this done...talk about the right doctor for the job.
The A-Team
After breaking my water, I dilated quickly to a 6. The entire team was aware that Gabriel came quickly and that not being ready may put our baby in danger....so they stayed. The doctor never left the hospital grounds and the Neonatalogist (special baby doctor) decided not to wait to be called but came to our room and prepared herself to wait no matter how long it took (the selection and hearts of these docs was certainly another answer to prayer).
Screaming
Within an hour, I was dilated to 10 and ready to push. All the docs, NICU nurses, and respiratory therapists were assembled. It took me two contractions and she was out....screaming! I cried when I heard her cry...overwhelmed that she was breathing. I think the delivery doc thought I was nuts because I just kept saying...she's breathing...she's crying....she's alive. Dr. Sansone said, "what did you expect?"...if only she knew. The screaming cry of our little girl was our greatest prayer answered. Just for the record, she was born on Sunday, December 6th at 6:21 PM weighing 3 lbs 15 oz. and 17 inches long.
One Kiss
I got to kiss my little girl before they rushed her to the NICU. This was the last time I would touch her until Monday night around 8 pm. Unfortunately, I was too sick to leave my bed and needed to remain on Mag for a full 24-hours after her birth. Seeing my little girl for the first time was both an amazing and overwhelming experience. At the sight of her tubes and wires, I struggled with guilt as I felt like my body had failed her and now felt quite helpless as there was little, other than pumping breast milk, that I could do to serve her.
Plastic
For the next couple of days, I remained in the hospital because my blood pressure was quite high. Coming off the Mag made me realize just how terrible it really is to sleep on a plastic mattress with flat pillows...oh and did I mention I may never again be able to have a suitable meal of meatloaf and turkey?...also potentially made of plastic. There are just some things that a hospital should take off their menu.
Going Home
I was released on Wednesday night and continued into Thursday to struggle with rising blood pressure numbers. This made traveling to the hospital difficult as I was seeing star bursts in front of my eyes. I knew I needed to rest but this is tough for a mama to do when she wants so desperately to be near her baby. I was more than grateful to be home as I had only had glimpses of Gabriel in all those days (I was wheeled to the lobby a couple of times to see him as he could not enter the hospital with the H1N1 precautions) and of course sleeping in my bed was incredible.
I'll close this post and write a couple more to give you the story of her name and the very latest updates on her health.
For those of you that have been praying...thank you seems insufficient.
All our love,
The Kings
Friday, December 4, 2009
Left Side, Head Down
This will be brief as I do not have much time to have my head in an upright position. Yesterday, I went in for my NST which went pretty well after a glass of apple juice (they were trying to get the baby's heart to accelerate properly along with her movements). When I finished with my test, I was to see Dr. Tracy but she was running behind schedule so they decided to keep me laid back in the cushy leather recliner on my left-side to ensure that my blood pressure remained low for my appointment. The staff at my OB office are amazing...they brought in blankets, a heater, and ready at my fingertips...trashy gossip magazines. Couldn't have asked for a better set-up.
With all this pampering you would think that my BP would have been more than cooperative...not the case. Once I was moved to the exam room, I was laid down again on my left-side. The first read of my BP was 14o's/100...so we waited for some time (PS...excruciating headache during this stint)...went down to 130/90. This meant a trip to the hospital as it was clear that after two hours of resting my BP was not planning to enter the all-clear zone.
At the hospital I was once again laid on my left-side...but this time my head was nearly completely flat. My pressure came down. Blood and urine were taken and came back clear. It is becoming more apparent to me that my body has changed once again. After I was discharged, I tracked my BP at home...same pattern....head up = BP up, head down= BP down. Dr. Tracy is going to check in with Dr. Lagrew about upping my Nefedipine which not only controls my contractions but lowers my blood pressure...hoping this will buy us a couple more weeks.
Prayers for my rising pressure would be much appreciated!
God's Peace,
Michelle
With all this pampering you would think that my BP would have been more than cooperative...not the case. Once I was moved to the exam room, I was laid down again on my left-side. The first read of my BP was 14o's/100...so we waited for some time (PS...excruciating headache during this stint)...went down to 130/90. This meant a trip to the hospital as it was clear that after two hours of resting my BP was not planning to enter the all-clear zone.
At the hospital I was once again laid on my left-side...but this time my head was nearly completely flat. My pressure came down. Blood and urine were taken and came back clear. It is becoming more apparent to me that my body has changed once again. After I was discharged, I tracked my BP at home...same pattern....head up = BP up, head down= BP down. Dr. Tracy is going to check in with Dr. Lagrew about upping my Nefedipine which not only controls my contractions but lowers my blood pressure...hoping this will buy us a couple more weeks.
Prayers for my rising pressure would be much appreciated!
God's Peace,
Michelle
Tuesday, December 1, 2009
Knifty Knitting
This pregnancy has stretched me incredibly. Yes, I am talking about more than the 45 lbs. that I have gained. In this time, I am finding myself praying more boldly, understanding the role of being a parent more fully, and despite my coordination challenges...learning to knit. I have finished about a half-dozen hats which is wonderful...but somewhat useless when you live in Southern California.
Stop, Read, and Listen
This week's appointments began on Saturday. We had an NST and BPP (non-stress test and biophysical profile ultrasound) done at the hospital because the doctor's office was closed for the holiday. It was a challenging afternoon with the staff assigned to our case. Honestly, having been at the hospital twice in the last week, we are realizing that not all of the nursing staff reads our chart and some are not willing to listen...which is incredibly frustrating for us because of the complications with both my body and our baby.
We left on Saturday being told that the baby was not moving well. She scored a 6 out of 8 on the BPP because she did not take any practice breaths in 30 minutes. It was also a challenge to get her heart to accelerate properly on the NST. I am still not certain how accurately the days results reflected our baby's actual movements vs. the staff's abilities to get the testing done well.
The Latest Scorecard
My next appointments were yesterday morning. I had another NST and appointments with Dr.'s Lagrew and Tracy. Our little girl passed her NST with flying colors. Dr. Lagrew performed another BPP...she scored 8 out 8 this time round. My amniotic fluid was registering high at 27.2. He will continue to follow my fluid levels as the higher it stays the more risk we are at for the placenta to be flattened and fail. I am experiencing some difficulty breathing, especially at night, because my uterus is extremely distended with all of the fluid. Next week he will do a full-set of measurements which has not been done now for about 3 weeks.
Resolving Delivery Concerns
In my time with Dr. Tracy, we talked about my experience at the hospital. I expressed my concerns with some of the staff as it will be critical during delivery that they not only read our chart but follow our instructions carefully because some of the care that needs to be done with me is nearly opposite of their instincts and training. For example, after Gabriel was born, 48 hours later my body took the fluid that had been given to me during delivery through IV's and it shifted in my system compressing my heart and lungs. After our conversation, Dr. Tracy spoke with the head of OB nursing at the hospital and she has requested that I speak with her personally. This gives me good confidence that we will have a good plan in place prior to delivery.
Celebrating Blood and Urine
Although my blood pressure and weight have been spiking and my hands and face are swelling, my blood and urine tests continue to come back well! Certainly a cause for celebration as we have been hoping for a few more weeks for her to grow inside.
Prayer Time
This afternoon, I had Karen Wagner from church come to our home to pray for our family and specifically for our baby girl. She walked with us during my pregnancy with Gabriel, during his stay in the NICU, and came to be with us when I went back into the hospital with fluid on my organs. Our time together was peaceful. I was able to close my eyes and envision my baby from head to toe as she spoke words of health over her life.
We are so appreciative of your continued faithfulness to praying for our daughter and for my health. The very fact that we have made it to week 32 1/2 is a testament to these prayers on our behalf.
Next appointments are on Thursday. We'll keep you posted...
Love from the couch,
The Kings
This pregnancy has stretched me incredibly. Yes, I am talking about more than the 45 lbs. that I have gained. In this time, I am finding myself praying more boldly, understanding the role of being a parent more fully, and despite my coordination challenges...learning to knit. I have finished about a half-dozen hats which is wonderful...but somewhat useless when you live in Southern California.
Stop, Read, and Listen
This week's appointments began on Saturday. We had an NST and BPP (non-stress test and biophysical profile ultrasound) done at the hospital because the doctor's office was closed for the holiday. It was a challenging afternoon with the staff assigned to our case. Honestly, having been at the hospital twice in the last week, we are realizing that not all of the nursing staff reads our chart and some are not willing to listen...which is incredibly frustrating for us because of the complications with both my body and our baby.
We left on Saturday being told that the baby was not moving well. She scored a 6 out of 8 on the BPP because she did not take any practice breaths in 30 minutes. It was also a challenge to get her heart to accelerate properly on the NST. I am still not certain how accurately the days results reflected our baby's actual movements vs. the staff's abilities to get the testing done well.
The Latest Scorecard
My next appointments were yesterday morning. I had another NST and appointments with Dr.'s Lagrew and Tracy. Our little girl passed her NST with flying colors. Dr. Lagrew performed another BPP...she scored 8 out 8 this time round. My amniotic fluid was registering high at 27.2. He will continue to follow my fluid levels as the higher it stays the more risk we are at for the placenta to be flattened and fail. I am experiencing some difficulty breathing, especially at night, because my uterus is extremely distended with all of the fluid. Next week he will do a full-set of measurements which has not been done now for about 3 weeks.
Resolving Delivery Concerns
In my time with Dr. Tracy, we talked about my experience at the hospital. I expressed my concerns with some of the staff as it will be critical during delivery that they not only read our chart but follow our instructions carefully because some of the care that needs to be done with me is nearly opposite of their instincts and training. For example, after Gabriel was born, 48 hours later my body took the fluid that had been given to me during delivery through IV's and it shifted in my system compressing my heart and lungs. After our conversation, Dr. Tracy spoke with the head of OB nursing at the hospital and she has requested that I speak with her personally. This gives me good confidence that we will have a good plan in place prior to delivery.
Celebrating Blood and Urine
Although my blood pressure and weight have been spiking and my hands and face are swelling, my blood and urine tests continue to come back well! Certainly a cause for celebration as we have been hoping for a few more weeks for her to grow inside.
Prayer Time
This afternoon, I had Karen Wagner from church come to our home to pray for our family and specifically for our baby girl. She walked with us during my pregnancy with Gabriel, during his stay in the NICU, and came to be with us when I went back into the hospital with fluid on my organs. Our time together was peaceful. I was able to close my eyes and envision my baby from head to toe as she spoke words of health over her life.
We are so appreciative of your continued faithfulness to praying for our daughter and for my health. The very fact that we have made it to week 32 1/2 is a testament to these prayers on our behalf.
Next appointments are on Thursday. We'll keep you posted...
Love from the couch,
The Kings
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