Jillian gained 50 grams day each day for the last two days. Prior to her surgery she was gaining barely 20 grams per day. Talk about a big answer to prayer.
God has been showing His faithfulness in powerful ways, not the least of which was a scare we had today regarding a possible complication in my sister's pregnancy. As soon as we got the call that she was headed to the ER we asked many to pray. She is about 16 weeks along and I am relieved to report that thorough testing at the hospital revealed that everything is OK. God is good.
I neglected to mention in last night's Jillian update that her reflux is much improved. I probably forgot to mention it because I don't even think about her reflux most days. I think I would have cried with delight if, two weeks ago, you told me that the horrid retching and constant worry over keeping her feeds down would fade into a memory by today. She missed a dose of Reglan today, and just had a small spit up in the swing. How little tonight's spit up was in comparison to the past nastiness that overshadowed concerns of poor weight gain and insufficient feeding. I am so relieved.
Jillian has not been happy about going back to nursing. She also hasn't seemed super happy about taking the bottle either. I try to keep her to a routine. I play the same music (Soundtrack to Pride and Prejudice) and try to feed her in the same place each time. I am writing this as much for my benefit as for yours to remind myself that progress comes in fractional bites. We have seen some progress. She is settling in to nurse more quickly rather than having to suck the pacifier to relax for a minute or two before latching. I am seeing the timer reach 3 minutes of continuous nursing rather than starting and stopping for a minute or two. After 4 minutes she pretty much wants no more. I think she just wants to suck, not suck-swallow-breathe because when she begins to crab at me, she readily takes her pacifier and if I try to slip out her pacifier and sneak in the business at hand, she takes a few sucks before she realizes it's not the green plastic thing. We have had some really pleasant times the last few days with nursing. She is enjoying (and so am I!!) the time to look up and me and smile and listen to me talk. I tell her there will be time later for socializing, but she would rather coo and smile than address the business of building chub. And when she crabs, it is with a very expressive face, a gentle aaaa with a wide open mouth and only a small exclamation point. I really think that face and sound are very endearing. Strange, I know.
Tomorrow we go back to our nurse practitioner at the pediatrician's office. I look forward to seeing JoAnn and telling her about the events and progress of the two weeks since we last saw her. So much has happened and Jillian has made such a change for the better. Jillian will be weighed and probably get her first shot of Synagis a shot to protect her against a nasty respiratory virus this coming winter. I am also looking forward to the chance to pick JoAnn's brain about any ways in which I can make feeding Jillian go a little better. I am hoping that my days of bottle-washing are numbered. Sean pointed out that my bottle washing days will probably come to an end right around the time that we finish remodeling our downstairs, a project that includes adding a dishwasher to our new kitchen. Nice. But I wish I had a dishwasher NOW.
This afternoon we received a package of goodies from some friends in Iowa. (Thanks Lorinda and Ryan!) As I handed Will a new monkey from the package he said to me:
After that, New Monkey accompanied us on our walk to the park and got to ride the slide and the swing with his new friend, Will.
"We should take the tag off so he knows he can stay."
It is hard to believe Jillian had open heart surgery just over a week ago. We've been settling in at home for a week and things are starting to slide into a routine. The day of surgery is starting to feel like a distant memory. Certain things about that day will remain bright in our memories and the sunrise will be one of those things. Take a peek over at the left. To be able to enjoy that beauty on that morning was one of God's small mercies to us. Thanks so much to all who continue to pray and send us encouraging words.
Jillian is gaining weight.
Will seems to enjoy having her at home. He's on constant smile watch and makes sure to include her in nightly round of bedtime hugs and kisses. I'm enjoying his exuberance and deepening imagination with play. It's fun to watch and listen to him talk about the mundane things of life as if they were the most novel thing ever conceived. I look forward to him being my buddy again, and being able to take him to the park without worrying about being near a scale for J's feedings. After Jillian's last hospitalization he had a tough time adjusting to being at home with me again. We definitely found him testing his boundaries with mommy and daddy more than the grandparents. This time he is adjusting much better and we're able to enjoy him rather than be on edge all the time. He is so verbal and says such funny things - I could devote an entire blog to just Willisms for the amusement of our friends and family members.
Will should be in bed but he is currently yelling down the stairs for me to rock him. Jilli and I should be in bed. Sean is working on the house downstairs, making much overdue progress. More soon about Jillian's continuing adjustment to home life and upcoming occupational therapy. We appreciate your continued prayers, particularly that Jillian will continue to improve with her eating. She is now nursing only about 3 minutes and taking just around an ounce at a time. She should be taking closer to 2 ounces, preferably more. Until she does, she keeps the nose hose and gets those overnight feeds. Pray also for wisdom for Sean and I as we begin to think about my return to work. There are a lot of factors to consider with that decision, as I'm sure you can imagine. My boss has been very supportive and understanding through this whole ordeal and it's basically up to us. We'll need to make a decision by the end of the week.
Miss Personality has had a very good morning. She's been all smiles today.
We had an early morning workout with Physical Therapy. We learned stretches
to help Jillian get used to bringing her arms in towards her chest, a motion
previously uncomfortable to her because of her great work of breathing. We
also learned some positions in which she can lay to stimulate muscle
development and head control. No tummy time for two weeks, so we have to get
creative to help her strengthen her neck and other muscles which play key
roles in reaching some of her grasp, push, kick milestones.
Jillian is on a roll with her feeding. She is doing better and better on the
bottle and, (drum roll please) yesterday I got to breastfeed her for the
first time since September 1. That was huge for me. She did great, latching
right on like she never stopped. [I realize some people think breastfeeding
is a very private thing, and while I understand that to a degree, I also
think it is such a wonderful, beautiful thing that is one of God's great
gifts to us. I'm passionate about breastfeeding because I really believe
it's something God designed my body to do, he designed Jillian with a
built-in sucking reflex. It is one of the few things that doesn't need to be
taught to babies. Just as I have a responsibility to nourish my child
spiritually, I have a responsibility to use what God has given me to nourish
my children physically, too. Not that I think I'm sinning or being
disobedient to God if I feed formula or provide nourishment by other
measures. I think it's amazing that God designed mothers to be able to
provide for their babies this way. Even in conditions of maternal
dehydration and malnourishment, mothers can still provide breastmilk for
their infants to a large degree. So that may give you a little understanding
to why it's such an important thing for me. Additionally, I love the bonding
it creates, too.] So anyway, Jillian is continuing to nurse well today. The
nutritionist advised us to do pre- and post-feed weights again, so it's back
to number neurosis. We'll continue to supplement her through the feeding
tube with continuous feeds overnight. I am looking forward to seeing
progress with her weight gain.
I saved the best news for last. We are going home today. Can you beieve it?
She had her chest opened up last Thursday, and now it's Monday and we get to
take her home. God is good. We are so thankful for His faithfulness in
carrying her so smoothy through this whole ordeal. We are thankful for so
many things, not the least of which are the prayers of so many, and all your
encouraging words. As Psalm 139 teaches, even at the deepest depths, God is
present with our Jillian. He ordained these days for her even before they
began. And He knew the final outcome.
*The setting:* Will is standing by the window and takes off his pants.
Grandma: Will, what are you doing?
Will: I want somebody to see my butt.
Grandma decides not to fight the battle unless he removes his diaper.
Thankfully, he leaves it on.
*The setting*: The dinner table. Will shovels in a bite of food and says:
It goes in my mouth, and down my esophagus into my tummy and TO - MY - BUTT!
*The setting:* The playground with Grammy Smith.
Will: Daddy is a man. Daddy is a *Gentleman.* Mimi is a *Lady.* Madison is a
cousin. Madison is my *FRIEND.
*
I think Will is exercising his vocabulary.
Our Saturday started with a 5am migration of Jillian and I with all our
stuff from our spacious, sunny, private room across the hall to a more cozy
semi-private room. I'll miss being by a window and having the natural light
to remind me of the outside world. The staff was highly apologetic, and I
don't fault them at all. One of their heart transplant kids was coming in
from home and needed the private room. Jillian was the only non-isolation
kid with a private room. Thus our luck with great room assignments seems to
have waned. But there is still a positive in this. During Jillian's previous
admission to the CCU there was a little 9 month-old in the bed next to hers.
He was there only 24 hours before going home, but I enjoyed talking to his
mom and have thought about them often during the time we were at home. He's
back in the hospital, and he happens to again be Jillian's room mate. I look
forward to talking more with his mom as the day goes on. She can offer a lot
of "been there, done that" wisdom about the whole process of heart surgery
and tube feeding at home, as well as juggling a sick infant and a busy
toddler boy. Her name is Kristin, her son is Aaron. Pray for them, for
Aaron's healing.
I just helped Jillian's nurse replace the feeding tube. Discussion in rounds
with Dr Schachtner (previously and erroneously referred to by me as Dr
Shatner) highlighted her reluctance to let Jillian go any longer without
definitive nourishment due to concern about Jillian's low weight leading up
to the surgery. She needs the calories, fat and protein to heal. Dr S has
seen kids behave like Jillian: take the bottle voraciously right after
surgery only to turn up their noses 12 hours later. She said the usually
come around. So I am hopeful that the return of the NG tube will be a
temporary thing. Today we will start Jillian back on her previous routine
with "super milk" and hope it gives her some energy to take the bottle.
From a cardiac standpoint, Jillian continues to do well. I think her
breathing looks a little better this morning. They continue to adjust her
meds to optimize her pain control, thus her breathing will continue to get
better. Our focus today will be rest and nourishment.
Jillian is back in the Cardiac Care Unit tonight. She graduated to the
step-down unit. It's been a tough day for little Jilli and now she is
getting some much needed and deserved rest. She was given a unit of blood
this morning, then some diuretic following that. Her pacing wires and RA
lines were removed - a process that caused her to get a little worked up.
Later in the afternoon her chest tube was removed. I think that throughout
the day her pain was not quite under control, so she was pretty unhappy
whenever she was awake. We've never heard her cry so much in one day.
She hasn't really taken any measurable amount from the bottle since 2am this
morning. The good news is that she doesn't gag on it. She has not spit up
once since her surgery. That's more than 24 hours without spitting up. She
is however, only taking the bottle in her mouth and playing with it. Dr G
things it could be due to a busy day and the morphine she has on board for
pain control. I think her work of breathing is increased a little this
evening, so that could be a possible contributing factor. She is on IV
fluids at a maintenance dose, which is enough to keep her from experiencing
thirst. This could be decreasing her desire to drink from the bottle, too.
So, the plan is to feed her tonight if she seems hungry and then decrease
her IV fluids in the morning, giving her a chance to develop a need to suck
from the bottle. If she doesn't start taking more by mouth, they'll have to
replace the feeding tube. I made my case to the resident asking that we
decrease the IV fluids and really give her a full chance to start taking by
mouth better. The feeding tube is certainly helpful if she won't eat, but
since she had such terrible gagging and vomiting so frequently when she had
that "nose hose" in, I really want to give her every opportunity to show us
what she will do.
As I mentioned, her work of breathing seems increased. By that I mean that
she is grunting some with exhalation, and also the skin beneath her ribs
sinks in with inhalation. This is part of the pattern that I was seeing at
home which made me want to bring her in. The resident just came by to take a
look at her. Earlier in the ICU they thought her grunting and retracting was
due to pain. Now that she is getting pain meds around the clock instead of
as needed her pain seems adequately controlled. Her chest xray looks ok, so
the resident thinks maybe she just needs the little extra flow from her
nasal cannula, so they went back up on her "O's" (oxygen). Her oxygen level
in her blood has been fine, so the increase in oxygen being given to her is
less because her levels are low and more to support her with a little extra
flow.
Overall, Jillian is still making good progress, but there are still some
areas where I am looking forward to seeing improvement. Specifically with
feeding and her breathing. The hilight of my day was getting to hold her for
the first time in over 24 hours. She got some balloons from Grammy and Will
when they came to visit, and she has really been staring at them. So at
times, she has been very bright-eyed and alert. But she has crashed hard,
and hopefully will sleep well tonight. Hopefully I will too.
I asked you to pray for Jillian's appetite. Sean and I left the hospital
briefly for some dinner (yummy Thai food!). Shortly before we left she was
doing a lot of sucking in her sleep. So I eased the pacifier into her mouth.
I was surprised to see her take it pretty readily. By the time we got back
she was going to town on that pacifier. So the nurse suggested we offer the
bottle. Our little girl chowed down! Voracious appetite indeed! She didn't
gag even once and so far, no spit up - just some normal baby burps. Jillian
hasn't done much more than play with the bottle nipple and gag on it for a
few weeks, so I've been giving the majority of her nutrition through her
nose hose. I had serious concerns about her loosing her ability to suck. I
had early intervention lined up to come to the house next week to evaluate
her oral motor abilities. To see her take the bottle immediately and suck so
eagerly was the most wonderful cap to a really great day. I hope she
continues to improve so rapidly. And it seems that the pacifier will be her
new best friend.
You never think you'll be glad to see your child hopped up on narcotics. I
didn't expect to have such a hard time seeing her like this. She is flat on
her back in a crib, "big-white-bandaid" on her chest and a chest tube, pacer
wires and infusion line all coming out of her chest. What unsettles me is
just that now she really does look sick. She looks more pale, her head is
arched back a little and she looks drawn around her mouth. But I know she's
just worn out and sedated on pain meds and other sedation. Sean says she
looks like she just had major surgery. His eye picks out the fact that she
has at least 7 IV pumps at her bedside, too. Something that my eye just sort
of passes over as expected. It's good to see it from his perspective. We're
working on feeling comfortable with all this.
The rest is all good news. Her breathing tube is out and she's on a little
oxygen by nasal canula (just little prongs that sit by her nostril.) Though
her blood pressure is higher than they would like it, her oxygen level is
good, her heart rhythm has returned to a normal rhythm (*for my fellow
health care professionals: she was in a junctional rhythm - totally expected
due to the proximity of stitches to the conduction pathways; she just
flipped into sinus and her RAP is normal! Her BP is stable on milrinone and
nipride and she's not being paced currently.)* Her chest tube is draining a
moderate amount of blood, but they expect that to decrease as they get her
blood pressure down to a normal level.
Jillian's nurse, Nicole is excellent. She has been one of the best parts
about today. She is Jilli's dedicated nurse all day long. She met us in the
preop area and then walked with us as we carried Jilli to the OR where we
handed Jilli off to the attending anesthesiologist. Then Nicole escorted us
to the surgeon's office and sat with us while we met with him and asked
questions. Next she gave us a tour of the ICU and showed us where Jillian's
room would be post op. She left us at 9:15 and updated us at 10:15. At 11:15
she took us to the conference room and told us the surgery was almost done
and to expect Dr G (the surgeon) to come update us soon. After she got
Jillian settled, she came to bring us to Jillian's bedside. She is obviously
knowledgale and has been doing a great job answering all our questions and a
very thorough and compassionate job with little Jilli.
Dr G seems pretty great, too. He was very thorough in our conversation
preop, and has been patient with my many questions. He's already been by to
check on Jillian and seemed concerned about her pain. I like his priorities.
Our pastor liked the confidence with which he breezed into the conference
room and told us that all was well. "It's as if he just told us he took out
the trash" (or something like that) is what he said. My thought was: "That
man just had his hands on Jillian's heart. No one else may ever touch her
heart like that.
So the plan for the night is to keep her as quiet as possible. I'm glad she
is again in a private room so I can stay at her bedside. I was expecting her
to be in a pod of 4 cribs, so I am pleasantly surprised. Tomorrow they will
let her begin to wake up and start removing all the extra tubes. They'll
start feeding her tomorrow unless she seems like she wants it tonight. She
doesn't have the feeding tube anymore because the breathing tube went
through her nose. So they'll first feed her by bottle, then replace the
feeding tube, if she won't take the bottle.
Please pray for a peaceful night for Jillian. Pray that her blood pressure
will decrease to the target level the doctors are looking for. Pray that the
bleeding in her chest will stop completely and that her pain will remain
well controlled. Pray that she will have a super appetite tomorrow. Thank
God for Nicole, Dr Gaynor and the many others who are caring for Jillian.
I am thankful for Will and the reminder he is to me that life goes on. This
morning he told my mom that when she was little *he* used to change
*her*diaper. Then he told her that Daddy is a man, and a gentlemen.
Then he told
her that Madison (my neice) is a cousin, and that she is his friend. When we
left for the hospital on Tuesday I got down on my knees in front of him and
kissed him and hugged him and told him I was going with Jillian to the
hospital for a few days. When I stood up, Sean stooped to hug him, but he
turned away and walked to Jillian, who was in her carseat on the floor. He
leaned in under the handle and practically layed on top of her and gave her
a big, sincere hug and the sweetest, most tender kiss on her forehead. I
love that kid.
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