7 posts from August 2009

The past week has been such a blur. It's been life-changing, for sure; challenging, growing and encouraging. We're so glad to have Jillian at home. Glad to know that the doctors felt that, despite her heart condition, she is stable enough to be at home with us. We're thankful for the medical care she received last week, and will continue to receive over the coming months.

Days and nights in the NICU were marked, for me, by feeding times. One night I stayed at her bedside all night in order to be there to feed her when she was most awake. Other nights I slept in a parent sleep room (basically a little closet-sized room with a bed and a phone) and the nurses called to let me know she was awake. So I'd walk through the reception area and request to be admitted to the unit to feed my daughter and walk down the long hallway towards the part of the unit where her warming bed was. Excitement and anticipation mounted each time I walked down the hallway, even if I had left for only a few moments to make a phone call or use the bathroom. I would crane my neck to see if, at the end of the hallway I could see little arms and legs waving from bed 2014-3.

 
I spent a lot of time at her bedside reading, or dozing in a comfly chair, feeding Jillian or just watching the general commotion. I felt pretty at home there in the NICU, but I wonder how overwhelming it would be for someone not used to all the beeps and alarms of the heart monitors and IV pumps. The nurses were impressed that I could sleep through it all. I guess it was just pure exhaustion, or feeling at home among all the medical equipment. I was impressed to watch the teamwork among the nurses, and the compassion with which everyone responded to the needs of the infants who were patients there. The three other infants who were Jillian's neighbors were quite ill with some serious conditions. I found myself passing the time praying for them and thanking God for Jillian's relatively good health.

More Blood Draws

Each day Jillian was weighed and had blood drawn. The doctors make their rounds in the morning and the prognosis for the day was set at that time. They usually looked at her, listened to her, asked me if I had questions, then pronounced her beautiful and healthy-looking. The first two days after starting Lasix she lost a significant amount of weight. It seemed the amounts were large enough to be concerning to the doctors. The third morning she gained, and they were happy, but wanted to see another gain the next day since she had lost so significant an amount the previous days. So they decided to keep her an extra day. When, on Monday morning her weight was once again higher than the previous day, I felt like doing cartwheels, and the smiles on the face of the nurse showed her happiness also.

Extra Calories

Lasix is a diuretic. Jillian is taking this to help decrease her blood volume, thus decreasing the volume of blood her heart is working to pump, and decreasing the volume of blood circulating through her lungs. Because of the holes between the right and left side of hear heart, the oxygen-rich blood returning to the left side of hear heart from her pulmonary circulation would return through the path of least resistance to the right (oxygen-poor) side of her heart, rather than flowing out through her aorta to the rest of her body. That meant that the right side of her heart was bearing the stress of pumping blood returning from the body into her right heart, as well as the blood flowing back through the hole. This also mean that extra blood was flowing from the right side of hear heart into the circulation in her lungs; thus putting stress on the circulation in her lungs. Over time this could lead to hardening of the blood vessels in her lungs, as well as increase in size of the right side of her heart. The heart is a muscle. The more you use a muscle, the more it bulks up. Her body was burning extra calories because of the increased work to pump blood, and that's why she wasn't gaining. So this is why Lasix is good. The goal is to decrease the amount of work her heart has to do so her body can use the calories to make fat and grow and develop, rather than fuel an overworked muscle.

One thing to watch with the Lasix is her electrolyte balance. Just as you loose salt with sweat, those electrolytes follow water as it's eliminated through the kidneys. That's why they kept drawing little Jilli's blood in the hospital. They had to make sure that her body was able to hold on to electrolytes as it got rid of water. We have to give her a potassium chloride supplement at home to help keep her electrolytes balanced. And she will have to have some blood tests at her pediatrician's office also, just to continue to follow these electrolytes.

So now we're back home with Jillian and a digital scale to follow her weight. My days still revolve around feeding times and daily weights. My focus is making sure she gets the maximum amount of calories in a day that I can give her. We have a digital scale rented from the hospital to weigh her in the mornings. I also weigh her before and after I feed her and the weight increast in grams gives me an indication of the volume of milk she's taken in mililiters. I pump after I feed her and give her a bottle or two of that milk a day. During a feeding the fat content of the milk I produce increases over the course of the feeding. So the milk at the end has the highest fat. Feeding this milk through a bottle during her sleepy times ensures that she is getting more calories at times when she would be nursing for a shorter amount of time.

We follow up with a cardioloist at CHOP next Thursday. She also has a pediatrician appt for her one-month visit on Wednesday. We'll continue with weekly pediatrician visits affter that. I'm looking forward to meeting her cardiologist and learning what the plan will be for the surgery. They've told us to expect surgery around three or four months of age, but we don't really know anything more specific. I'll also get to follow up with a dietician to further assess Jillian's nutritional requirements at that time.

We should be leaving the hospital with Jillian in just a few hours. Hooray!

Jillian has gained weight the last two days, and her electrolytes are stable
on the Lasix.

I'll post more of an update when I'm back on my own dinosaur of a computer
at home.

Thank you everyone for your prayers and encouragement.

Jillian had a good night in the NICU. She slept well, and I stayed at her
bedside so I could feed her more frequently and catch her in periods of
wakefulness to feed her. She's a heavy sleeper like her mommy, and I have a
really hard time rousing her out of sleep to get her to nurse. Her weight
has decreased over the last 48 hours, and I'm hoping that the Lasix is
responsible for this. One of the doctors told me that he expects a weight
drop in the first 48 hours on Lasix, then things should level out.

I met with a Lactation Consultant yesterday to talk about strategies to
maximize Jillian's intake without stressing her out. Breastfeeding takes a
little more work than bottle feeding, and with Jillian's decreased reserve,
she tires out more quickly than other babies. The LC recommended that I feed
her around the clock at three hour intervals, and she should be taking at
least 2.5 ounces with each feeding. I have a feeling I'm going to become a
neurotic scale nazi as I follow her pre- and post-feed weights to monitor
her intake volumes. Jillian had been very generous with me at night,
averaging up to 5 hours between night time feeds. So much for that.

Before the doctors will send her home they're still looking to make sure her
electrolytes are stable while she remains on Lasix. That means blood draws
twice daily. So far, the phlebotomist has not been successful in drawing
blood after two tries and the doctor has done an arterial blood draw to get
blood for this test. OUCH! Jillian doesn't like that too much and she tires
herself out crying, so she sleeps for a few hours after the procedure.

We're also looking for her to gain weight. This poor little girl has a very
sensitive gag reflex. She's not that much of a spitter, especially compared
to Will. But when some foreign, plastic object enters her mouth, watch out!
She threw up volumes after her first dose of Lasix, and also after she was
given a little squirt of sugar water to try to help sooth her during the
blood draws. So we've learned the valuable lesson: Lasix on an empty tummy,
pacifier on an empty tummy, vitamins on an empty tummy - or else! Her night
nurse, Jennifer, showed me a great trick for getting her to take the Lasix
without shoving the syringe into the back of her throat. She took and empty
bottle nipple and put the medicine in to its tip, then let Jillian suck on
the nipple. It worked beautifully.

So please think and pray for chub. I'm hoping that we'll see weight gain
tonight when they weigh her.

Seven workds you never want to hear yourelf say:

"MY DAUGHTER IS HAVING OPEN HEART SURGERY"

On Wednesday little Jillian took a trip to the big city. It wasn't a trip
for pleasure, as her brother's first trip down town was. Instead of the
light show at Macys, this trip was to the Emergency Department at the
Children's Hospital. At Jillian's routine two week check up her nurse
practitioner was troubled by a combination of things she was seeing: fast
breathing and low weight gain being the primary things. I had been concerned
a bit myself, but in trying to be mom and not a nurse, I wrote it off to
being over tired with a new baby and getting used to having two little ones
at home. (I will never hesitate to verbalize my concerns for pride and fear
of looking silly again!)

Tests in the ER led them to bring cardiology in to look at her heart.
Further tests have revealed that she has two holes in her heart. For you
medical types, they are Atrial and Ventricular Septal defects. The doctor
gave me this news at 2 o'clock in the morning shortly after Jillian had
finally been moved from the ED to the Neonatal ICU. That's hard new to hear
at any time, but after 12 hours of waiting and tests standing there alone
next to my little Peach Blossom, those words sounded like a death sentence.
Time and light of day have put many things into perspective and I've found
much more encouraging things to focus on. Primarily, Jillian is stable. She
does not require oxygen or any medicine to support her heart at this point.
Though her breathing is fast, her heart rate is mostly normal, though it
climbs a little bit when she feeds. Every doctor who sees her comments that
she is a "healthy kid", and looks remarkably well, given the circumstances.
Secondly, she continues to breastfeed well - and for that I am very
thankful.

Jillian was started on Lasix yesterday. It's a drug which helps reduce blood
volume, and therefore the work that the heart is doing. It is expected that
over the first 48 hours she will loose a little weight as the lasix causes
her kidneys to eliminate extra fluid from her body, but after that we'll be
looking to see her weight start to increase and her breathing rate to
decrease. The reason her weight gain was low was that she was using up extra
calories using muscles to breath so fast. So as her breathing becomes easier
and her lungs are not working so hard against the extra blood flowing from
right to left through the holes in her heart, those calories should help her
develop some chub in her cheeks and rolls in her thighs.

Join with me in cheering: "Let's go thigh roles! Let's go knuckle dimples
and pinchable chubby cheeks"

So now we're just waiting to make sure that some things like electrolytes
and weight and breathing remain stable as she continues to get the Lasix
twice-a-day. She will probably be here through the weekend, which means I'll
be here with her through that time. Then she will see a cardiologist in two
weeks and ultimately have open heart surgery around three or four months of
age, giving her a chance to grow and bulk up first.

This hospital is amazing. The staff members at all levels have been so
caring and kind. The doctors and nurses are compassionate and forthright and
candid with me. These things I appreciate most of all. They tell it like it
is and they let us know as soon as they have any information to share. I'm
constantly being asked if I have any questions, which I rarely do because
the updates have been so thorough. The amenities offered to familes really
reduce the stress of being here around the clock and nursing a newborn every
two hours. I'm thankful to have a bed to sleep in, a shower where I can wash
and healthy food to eat.

Other positives I've found to focus on are the generous help of family and
friends and the outpouring of prayers and encouragement from friends and
family. Early Thursday morning I sent an email to some friends and my
sisters begging for prayer support as I felt like I was literally pushed to
the edge of my emotional strength. Since they have been praying, I have felt
God's peace in my heart, and I am confident that The Lord has our little
girl in his hands. Just as Psalm 139 assures us, He knows her intimately as
He knit her together in my womb. He has ordained all her days. He is not a
distant God, but one who knows us intimately. Though this is a trying time,
He promises to walk with us through it and show us how we can grow in
strength and faith through it all, ultimately for His own glory.

Jillian arrived right on her due date; a stormy Sunday morning which many will remember because of extensive flooding and torrential downpours throughout the area. We will remember August 2, 2009 for a drastically different reason.

Contractions started slowly - Friday evening we made pizza with my sister and her husband an as we sat enjoying the meal I realized that there was a steady 30 minutes between that sensation that was more than a twinge. I was excited. At 2:30 I woke up and timed the contractions at 15 minutes apart. I couldn't sleep because of excitement and butterflies, so I made a scrambled egg sandwich and watched a documentary about the mating of Pandas in captivity , then went back to bed. At 7am we called Sean's mom to come watch Will and I called my sister to tell her to get on the road. I hoped she would make the three hour drive in time to be in the delivery with me.

At this point I still didn't know whether I'd be going to the birth center or the hospital when the magic "5-1-1" time arrived, but I didn't want to know and have something to worry about. So I tried to sleep through the morning. By the afternoon they were about 10 minutes apart, and still pretty mild. Sean and I went to Ruby Tuesday's for dinner and when the waitress brought us the check and congratulated me on the pregnancy, I almost told her I was in labor. I wish I had - I would've loved to see the look on her face. On the way out of the restaurant I stopped in the restroom. I must have been distracted by something (maybe contractions) because I walked into the men's room. Sean has enjoyed giving me a hard time about that since. Lucky for me and my pride, there was no one around to witness my blunder. I realized when I changed stalls due to a broken lock on the one I had chosen and I noticed the urinals on the wall. I would've liked to see my face when the realization hit.

There was a couple from church sitting in the booth nearest the restrooms and as I greeted them on the way out I hoped they hadn't seen my mistake. They didn't say anything, so I think my secret is safe. They wished us well and Sean and I headed out to do some laps around the mall. One lap around the third floor and the contractions had intensified to 5 minutes apart and I was having a hard time talking through them. The rest of the evening is a little bit of a blur, but I do remember one point sitting on the stairs with uncontrollable shivers and starting to feel like this was not something I could do without pain meds. Sean was a great encouragement to me then, as he was throughout the whole day and into the birth. He assured me I was doing well and if I needed an epidural, it would be ok. I also remember trying to sleep between contractions and feeling so panicked when one would start and Sean wouldn't wake up with me to time it or talk me through it. I couldn't have done it without him.

By 4am the contractions reached the 5 minutes apart, lasting a minute for one hour mark, and we called the midwife. She asked us if we wanted to head to the hospital, and I said I did since the drive was potentially a half hour and I was afraid of things progressing too quickly before arriving at the hospital. In my mindset at the time I didn't even stop to entertain my disappointment that  I wouldn't be going to the birth center. As it turns out, the construction at the birth center was providential as our little girl would need a little extra medical care.

We arrived in room 435 at 5am. After all the obligatory admission paperwork was complete Melecia (Melecia Baby-lady, as Sean calls her) advised me to get on hands and knees to find some relief from back labor. It seems like just a couple contractions in that position and then they became incredibly intense and I was needing to push. Thankfully the panic of transition lasted only a short time. I said to Sean over and over that "I can't do this!" but he continued to encourage me telling me I was doing it and doing well! The hypnobirthing class taught me techniques that really helped me remain calm and relaxed through the pain of contractions. I just kept repeating to myself: "pushing is good, pushing is GOOD!"

30 minutes of pushing compared to 2.5 hours with Will and our little baby girl was born into her daddy's arms. That's my favorite part of the story. He placed her on my chest and my sister cut the cord while my mom watched on through a big smile and tears of joy.

She came so quickly however, that her little lungs didn't get the fluid all squeezed out. So she needed a lot of suctioning and ended up in the nursery on oxygen overnight. By the next morning she was off oxygen however, and we were able to go home on time with her. Her chest x-ray and blood cultures were all normal with the exception of some fluid in her lungs. They called it Transient Newborn Tachypnea, or a delayed transition. She's been doing just fine since, and apart from a little thrush on her tongue because of the antibiotics, she hasn't had any lasting effects.

Jillian is a remarkably easy going baby. She doesn't cry and most nights would wake up to nurse unless I wake her up. I haven't let her go longer than 5 hours yet, but now that she's two weeks old, I'll start letting her sleep and wake me up to eat. I thought Will was easy, but Jilli is spoiling me with her pleasant nature. Every time her eyes open I see a little more personality in her face and I am loving watching her grow into her own little self. We're so thankful.

Jillian Elizabeth Gregg

Born: August 2, 2009 at 8:15 am 

7lb 3oz and 20 inches long

Praise God for His marvelous gift!

Will still goes to sleep on the floor inside his door. When we go to bed we move him to his bed. Because of stairs and safety, we keep the gate outside his door and often in the morning he comes out his door and lays down on the floor behind the gate waiting for us to wake up. Yesterday morning we woke up to a pleasant serenade of "Tinkle-Tinkle LITTLE Staaah... Wondeh what you aaaah... up-up-UP above... so HIGH... like a diamond in the sky... Tinkle-Tinkle-Tinkle-Tinkle-TINKLE LITTLE stah... Wondeh what you aaaah."

Now that's one way to wake up with a smile. He's only just beginning to sing on his own and I am eating up every minute of it!