The Long-term Effects of Short-term Medical Decisions: A parent's story of NEC, the NICU and Short Bowel Syndrome

1
00:00:00,017 --> 00:00:05,731
NEC in the NICU is one of the scariest
words a parent or care team member can
hear.

2
00:00:06,313 --> 00:00:08,274
Hello, my friends. I'm Katie Taylor,

3
00:00:08,274 --> 00:00:10,475
and I'm so happy to be with you today.

4
00:00:10,475 --> 00:00:12,607
I'm a certified childlife specialist,

5
00:00:12,607 --> 00:00:16,999
and our mission here at this podcast is to
make sure that no family ever feels alone

6
00:00:17,220 --> 00:00:19,101
when they're navigating children's health
care.

7
00:00:19,101 --> 00:00:21,442
My guest today is my new friend,

8
00:00:21,442 --> 00:00:24,544
Kim Holland, and she shares the story of
her son Tripp,

9
00:00:24,544 --> 00:00:27,005
who was born at 27 weeks.

10
00:00:27,208 --> 00:00:30,666
Trip developed severe NEC underwent
multiple surgeries

11
00:00:30,894 --> 00:00:35,596
And spent seven months in the NICU before
coming home with short bowel syndrome.

12
00:00:35,596 --> 00:00:40,639
But even if your child has never
experienced a NICU stay or NEC there

13
00:00:40,639 --> 00:00:44,280
are three things that I think every parent
can take away from Kim's story.

14
00:00:44,280 --> 00:00:49,863
Number one, how to find your voice when
you feel like you don't even know your
child

15
00:00:49,863 --> 00:00:52,344
yet. You feel like you're not the expert
yet.

16
00:00:52,944 --> 00:00:57,827
Second, why it matters to ask how today's
medical decisions could affect your

17
00:00:57,827 --> 00:00:59,638
child's future in the long term.

18
00:00:59,638 --> 00:01:04,660
And third, how one person who truly sees
and supports your family

19
00:01:04,841 --> 00:01:07,542
can change your entire healthcare
experience.

20
00:01:07,542 --> 00:01:13,335
Like all the others, this is a very honest
conversation about navigating children's

21
00:01:13,335 --> 00:01:16,167
healthcare in the NICU, outside of the
NICU,

22
00:01:16,167 --> 00:01:18,468
through surgeries, through coping,

23
00:01:18,468 --> 00:01:21,980
advocacy, what you can and what you cannot
control.

24
00:01:22,620 --> 00:01:24,944
and how you can slowly build the
confidence to say,

25
00:01:24,944 --> 00:01:27,870
I can care for my child and I can do this.

26
00:01:27,870 --> 00:01:29,944
Here's my conversation with Kim.

27
00:01:31,240 --> 00:01:35,667
Okay, wonderful. Well, Kim, why don't you
introduce us to a little bit

28
00:01:35,667 --> 00:01:38,241
of who you are, where you come from and
about your family.

29
00:01:39,094 --> 00:01:42,534
Okay, my name is Kim and let's see,

30
00:01:42,534 --> 00:01:48,714
I born and raised in Texas and I have been
married for 13 years,

31
00:01:48,714 --> 00:01:51,374
been with my husband for, I guess,

32
00:01:51,374 --> 00:01:54,514
18 years. We have four kids together.

33
00:01:54,514 --> 00:01:59,754
We have a daughter that's 13 and then our
boys are 11,

34
00:01:59,754 --> 00:02:02,894
seven and two and a half. And so our,

35
00:02:02,894 --> 00:02:04,914
what do people say, the bookend,

36
00:02:04,914 --> 00:02:05,914
our caboose.

37
00:02:06,474 --> 00:02:08,365
is our medically complex child,

38
00:02:08,365 --> 00:02:14,008
that's Tripp. And so he's two and a half
and he really came in with a bang.

39
00:02:14,008 --> 00:02:17,997
And we thought we had this whole parenting
thing figured out.

40
00:02:17,997 --> 00:02:21,562
We're like, what's a fourth? Just add a
fourth into it,

41
00:02:21,562 --> 00:02:28,016
like no big deal. And so he really has
just shown us a whole different side

42
00:02:28,016 --> 00:02:30,587
of life in our marriage and our family.

43
00:02:30,587 --> 00:02:35,600
so it's been, he brought us into a new
world.

44
00:02:36,973 --> 00:02:41,072
I love his name Tripp, think because I'm
from Texas too and it's just like such

45
00:02:41,072 --> 00:02:43,829
a precious Texas boy name. How did you
guys pick it?

46
00:02:44,534 --> 00:02:48,814
So Tripp actually didn't have a name until
we were told that I had

47
00:02:48,814 --> 00:02:50,554
to have an emergency C-section.

48
00:02:50,554 --> 00:02:51,794
So

49
00:02:51,272 --> 00:02:52,272
no.

50
00:02:51,794 --> 00:02:55,114
it was like hours before he actually had a
name.

51
00:02:55,114 --> 00:02:57,054
We just kept calling him baby.

52
00:02:57,054 --> 00:02:59,794
And we're like, baby boy, baby boy.

53
00:02:59,794 --> 00:03:04,834
And so my husband is a junior and

54
00:03:04,834 --> 00:03:09,534
he and my father-in-law had always worked
together at the same company.

55
00:03:09,534 --> 00:03:11,134
And so my mother-in-law always said,

56
00:03:11,134 --> 00:03:14,214
do not have a third, like do not make a
third.

57
00:03:14,710 --> 00:03:16,982
She was like, the insurance would get
swapped,

58
00:03:16,982 --> 00:03:18,473
everything would get swapped. And so she
was like,

59
00:03:18,473 --> 00:03:21,395
please, like, I love if you want to like
carry on the name,

60
00:03:21,395 --> 00:03:23,956
which all of our boys have the same middle
name,

61
00:03:23,956 --> 00:03:27,339
which is the name that my husband and
father will actually go by.

62
00:03:27,339 --> 00:03:30,621
So they all have the same middle name and
their first name.

63
00:03:30,621 --> 00:03:34,363
And so we knew we weren't gonna make an
actual third.

64
00:03:34,363 --> 00:03:38,146
So he's the third, but we went ahead and
gave him Tripp,

65
00:03:38,146 --> 00:03:42,329
like Tripple as his actual name instead of
the third.

66
00:03:41,547 --> 00:03:44,031
I love it. That's so special. I

67
00:03:44,031 --> 00:03:45,222
love how your mother-in-law is like,

68
00:03:45,222 --> 00:03:48,357
do not, don't do this. ~

69
00:03:46,056 --> 00:03:47,056
Yeah.

70
00:03:48,357 --> 00:03:50,861
That's funny. My dad, my brother,

71
00:03:50,861 --> 00:03:53,635
and my grandfather all have the same name,

72
00:03:53,635 --> 00:03:57,601
but they all go by like a different
version of Jim or Jimmy or something like
that.

73
00:03:57,130 --> 00:03:58,130
Yep.

74
00:03:57,791 --> 00:03:59,433
Yeah. So it's Scott and Scotty.

75
00:03:59,433 --> 00:04:00,433
So my

76
00:03:59,841 --> 00:04:00,841
Yeah.

77
00:04:00,144 --> 00:04:02,456
husband is Scotty and my father-in-law is
Scott.

78
00:04:02,456 --> 00:04:06,191
And so all of our kids have, all of our
boys have Scott as the middle name,

79
00:04:06,191 --> 00:04:08,203
even Tripp, his middle name is Scott.

80
00:04:08,203 --> 00:04:09,203
~

81
00:04:08,821 --> 00:04:09,821
I love it.

82
00:04:09,625 --> 00:04:10,625
but yeah.

83
00:04:10,756 --> 00:04:13,714
That's so cool. Well, I guess we got right
into it.

84
00:04:13,714 --> 00:04:17,985
So you ended up having an emergency
C-section and how far along were you?

85
00:04:18,614 --> 00:04:19,614
So

86
00:04:18,934 --> 00:04:21,934
I was, when I had Tripp, it was 27 weeks.

87
00:04:21,934 --> 00:04:26,774
So I just turned 27 weeks and it was
because I had gone into,

88
00:04:26,774 --> 00:04:33,414
I had gotten admitted for preeclampsia and
I had pretty much told

89
00:04:33,414 --> 00:04:36,454
myself that I was okay, leading up to
that.

90
00:04:36,454 --> 00:04:42,074
And we were at our ranch for the week
before for July 4th and

91
00:04:42,074 --> 00:04:44,754
the higher elevation in central Texas.

92
00:04:44,754 --> 00:04:45,974
Like I just thought, oh.

93
00:04:46,716 --> 00:04:49,849
It's just the elevation change from
Houston to Austin.

94
00:04:49,849 --> 00:04:51,100
Like that's what

95
00:04:50,712 --> 00:04:51,712
Yeah.

96
00:04:51,100 --> 00:04:53,992
has made me swell. That has made my head
pound.

97
00:04:53,992 --> 00:04:55,894
And I'm like, I'm going to be fine.

98
00:04:55,894 --> 00:05:02,539
And then I remember crying every night
while at our place and I would,

99
00:05:02,539 --> 00:05:06,402
I couldn't lay down and sleep and I would
just cry thinking I'm going to die.

100
00:05:06,402 --> 00:05:10,436
And to just have that like morbid thought,

101
00:05:10,436 --> 00:05:11,756
but it really was, I was like,

102
00:05:11,756 --> 00:05:13,928
I feel like I'm going to die, but I'm
fine.

103
00:05:13,928 --> 00:05:15,650
During the day I was like, I'm fine.

104
00:05:16,278 --> 00:05:19,058
And so finally one day I told my husband,

105
00:05:19,058 --> 00:05:21,318
was like, we have to go home. I

106
00:05:20,919 --> 00:05:21,919
Yeah.

107
00:05:21,318 --> 00:05:22,758
was like, I have to go to the hospital.

108
00:05:22,758 --> 00:05:25,338
Like, I feel like I'm gonna die here.

109
00:05:25,923 --> 00:05:26,923
Yeah.

110
00:05:26,438 --> 00:05:30,378
And when we drove home, the ER,

111
00:05:30,378 --> 00:05:32,138
when I called them, the labor and
delivery,

112
00:05:32,138 --> 00:05:35,858
it was a call center. And the call center
told me,

113
00:05:35,858 --> 00:05:37,498
you just need to go to urgent care.

114
00:05:37,498 --> 00:05:39,818
It sounds like you just have a blood clot
in your legs.

115
00:05:39,818 --> 00:05:43,038
That's why you're swollen. And...

116
00:05:43,914 --> 00:05:45,375
I was like gaslighting myself like,

117
00:05:45,375 --> 00:05:49,098
okay, maybe I just have a blood clot in my
leg.

118
00:05:49,098 --> 00:05:50,600
so

119
00:05:49,815 --> 00:05:50,815
Yeah.

120
00:05:51,160 --> 00:05:54,143
I went home and I just soaked in Epsom
salt,

121
00:05:54,143 --> 00:05:58,546
like for a good hour, I just kept
refilling my bath and the soaking

122
00:05:58,546 --> 00:06:00,198
in Epsom salt for that magnesium,

123
00:06:00,198 --> 00:06:06,083
not realizing what I was doing was
actually potentially saving my life.

124
00:06:05,975 --> 00:06:06,975
Yeah.

125
00:06:06,083 --> 00:06:07,083
And

126
00:06:06,974 --> 00:06:10,567
so I soaked all night. I finally laid in
bed.

127
00:06:10,567 --> 00:06:12,138
I got a couple hours of sleep.

128
00:06:12,520 --> 00:06:15,653
and I woke up in my eyes where I had
puffy,

129
00:06:15,653 --> 00:06:21,337
like black eyes and my whole face was
swollen and I was calling

130
00:06:21,337 --> 00:06:24,710
my doctor's office and this is the doctor
that had delivered all three

131
00:06:24,710 --> 00:06:28,662
of my other children and so I'm calling
them and I'm not getting through

132
00:06:28,662 --> 00:06:32,990
and I'm like, I can't get in touch with a
soul to talk to.

133
00:06:32,990 --> 00:06:39,112
So I sent, and I had sat on hold for maybe
two hours and I sent

134
00:06:39,112 --> 00:06:41,334
him my chart message to the doctor and it
said,

135
00:06:41,738 --> 00:06:44,339
These are my blood pressures. This is my
face.

136
00:06:44,339 --> 00:06:47,000
These are my legs have swollen.

137
00:06:47,000 --> 00:06:49,121
cannot wear shoes. And they said,

138
00:06:49,121 --> 00:06:50,862
how quickly can you get to the hospital?

139
00:06:50,862 --> 00:06:56,475
And I was like, I just got to brush my
teeth and go and not realizing even then
that

140
00:06:56,475 --> 00:06:59,966
my life was in danger. Like I drove
myself,

141
00:06:59,966 --> 00:07:05,468
which is a 50 minute drive from our home
to the hospital by myself.

142
00:07:05,468 --> 00:07:08,490
And I showed up and the NP and my OB

143
00:07:09,174 --> 00:07:13,774
walk in and they just looked like they saw
a ghost and they're like how

144
00:07:13,774 --> 00:07:18,994
did you get here like where's your husband
and it just from there

145
00:07:18,994 --> 00:07:25,074
it just like spiraled and my blood
pressure was 200 over something

146
00:07:25,074 --> 00:07:28,674
I can't even remember the exact but I
remember seeing 200 and they looked

147
00:07:28,674 --> 00:07:32,814
at each other and they're like redo it and
she was like no her readings already show

148
00:07:32,814 --> 00:07:38,970
it's high so I was immediately admitted
and from then they were like

149
00:07:39,114 --> 00:07:40,114
get

150
00:07:39,274 --> 00:07:42,826
ready for the long haul, you need at least
another three months in the hospital.

151
00:07:42,826 --> 00:07:46,879
And so I just remember crying thinking,

152
00:07:46,879 --> 00:07:52,102
my husband has our three children at home
and I'm gonna be here.

153
00:07:52,102 --> 00:07:55,754
How, like we thought that was gonna be the
biggest struggle.

154
00:07:55,754 --> 00:08:01,087
And then each day my labs just kept
declining and declining.

155
00:08:01,087 --> 00:08:05,130
My blood pressure, they could not control
the swelling.

156
00:08:05,822 --> 00:08:07,663
was just constantly increasing.

157
00:08:07,663 --> 00:08:12,204
They had me on magnesium. ~ They had given
me the steroid shots,

158
00:08:12,204 --> 00:08:15,305
doing all the things for just in case if I
did

159
00:08:14,957 --> 00:08:15,957
Yeah.

160
00:08:15,305 --> 00:08:18,425
need to deliver. And then

161
00:08:17,570 --> 00:08:18,570
scary

162
00:08:19,026 --> 00:08:23,207
they gave me one last night. They gave me
an iron infusion and a blood transfusion.

163
00:08:23,207 --> 00:08:29,108
And they were like, this is your last
night to see if your body is going

164
00:08:29,108 --> 00:08:30,399
to turn around. And they're like,

165
00:08:30,399 --> 00:08:32,779
because you just keep trending up.

166
00:08:32,779 --> 00:08:35,400
of my kidney, my liver, all those levels
were just

167
00:08:35,638 --> 00:08:40,538
trending in the worst way. And so that
next morning at labs,

168
00:08:40,538 --> 00:08:46,598
they're like, this is it, you are going
into multi-organ failure and

169
00:08:46,598 --> 00:08:48,698
we have to have this baby today.

170
00:08:48,698 --> 00:08:51,838
so it was,

171
00:08:51,838 --> 00:08:55,598
I would say from then it was very fast,

172
00:08:55,598 --> 00:08:57,838
but slow. Like

173
00:08:57,271 --> 00:08:58,271
Hmm.

174
00:08:57,838 --> 00:09:01,978
they bringing in all the specialists and
telling us what our life was going

175
00:09:01,978 --> 00:09:03,598
to look like, like who.

176
00:09:03,926 --> 00:09:06,426
what the delivery would look like.

177
00:09:06,426 --> 00:09:11,006
And I remember like begging to have a
natural delivery.

178
00:09:11,006 --> 00:09:14,746
And I'm like, if he's tiny,

179
00:09:14,746 --> 00:09:18,306
like could I please just naturally have
him give him the positives

180
00:09:18,306 --> 00:09:22,286
of going through the birth canal for his
respiratory and breathing.

181
00:09:22,286 --> 00:09:25,426
And so they agreed to let me labor.

182
00:09:25,426 --> 00:09:30,566
And so I labored all the way to 10
centimeters and it was time to push.

183
00:09:31,294 --> 00:09:32,625
And I was like, something changed.

184
00:09:32,625 --> 00:09:35,318
was like, he is not in position like he
was.

185
00:09:35,318 --> 00:09:40,803
I felt him flip. And then they called it
and did an emergent C-section.

186
00:09:40,803 --> 00:09:45,008
And so, I mean, it was to say,

187
00:09:45,008 --> 00:09:50,433
like, to go through all of that and then
to still end up in an emergency C-section,

188
00:09:50,433 --> 00:09:53,876
I just, couldn't have written it.

189
00:09:54,556 --> 00:09:55,566
Yeah, it's like

190
00:09:55,566 --> 00:09:57,867
trauma, trauma, trauma, pain, pain,

191
00:09:57,867 --> 00:10:01,539
pain, fear, fear, fear compounded.

192
00:09:58,804 --> 00:10:00,368
Right. Right.

193
00:10:01,719 --> 00:10:06,341
like your story is reminding me as someone
who's worked in a hospital,

194
00:10:06,341 --> 00:10:08,882
like every time you see a family,

195
00:10:08,882 --> 00:10:13,104
you have no idea the moments that have
come before.

196
00:10:13,104 --> 00:10:17,686
Like even if you're there with your other
daughter because of stitches,

197
00:10:17,686 --> 00:10:19,687
like something could trigger.

198
00:10:20,001 --> 00:10:23,525
what you remember about your experience or
what Tripp went through.

199
00:10:23,525 --> 00:10:28,701
it's like, there's so, everybody walks
into the hospital full of bags that

200
00:10:28,701 --> 00:10:34,538
we can't see of experiences that shape how
they're going to cope with what's

201
00:10:34,538 --> 00:10:35,538
happening.

202
00:10:35,381 --> 00:10:36,381
Right.

203
00:10:36,290 --> 00:10:40,845
So Tripp is finally born. Is your husband
able to come be with you?

204
00:10:41,962 --> 00:10:45,764
Yes, yeah, so Tripp, whenever he was born,

205
00:10:45,764 --> 00:10:48,725
he was immediately taken and my husband
went with Tripp.

206
00:10:48,725 --> 00:10:52,246
So he was in the, not Tripp,

207
00:10:52,246 --> 00:10:56,708
my husband was with us during the
C-section.

208
00:10:56,708 --> 00:10:58,549
And then as soon as Tripp was born,

209
00:10:58,549 --> 00:11:02,471
he whisked away with him and went to the
NICU immediately.

210
00:11:02,471 --> 00:11:06,573
And then I still struggled.

211
00:11:06,573 --> 00:11:09,734
I was admitted for an additional five
days.

212
00:11:10,614 --> 00:11:14,754
after my C-section because my blood
pressure was like a runaway blood
pressure.

213
00:11:14,754 --> 00:11:19,474
I could not keep my oxygen levels up.

214
00:11:19,474 --> 00:11:22,494
It was really hard. was in the,

215
00:11:22,494 --> 00:11:25,754
what is it, the CICCU after.

216
00:11:25,251 --> 00:11:26,251
Yeah.

217
00:11:26,314 --> 00:11:29,814
So I was there for my recovery for hours
after.

218
00:11:29,814 --> 00:11:32,574
So I couldn't even go to the NICU to see
trip.

219
00:11:32,574 --> 00:11:35,354
I had an amazing nurse that was like,

220
00:11:35,354 --> 00:11:36,694
we're gonna get you moving, mama.

221
00:11:36,694 --> 00:11:38,354
She was like, where's your toothbrush?

222
00:11:38,354 --> 00:11:39,354
Where's your clothes?

223
00:11:39,776 --> 00:11:43,818
put a shirt on you and she just like
cleaned me all up and she was like,

224
00:11:43,818 --> 00:11:45,351
you're gonna go and see your son.

225
00:11:45,351 --> 00:11:48,613
And so she did everything to get me moving
and I was like,

226
00:11:48,613 --> 00:11:51,416
that just warmed my heart because it was
like,

227
00:11:51,416 --> 00:11:54,639
all I was seeing was a picture.

228
00:11:54,639 --> 00:11:56,520
But then even then I was in and out,

229
00:11:56,520 --> 00:12:01,455
not fully awake, just the recovery for me
was

230
00:12:01,455 --> 00:12:04,447
not a smooth recovery. But.

231
00:12:04,611 --> 00:12:05,611
you.

232
00:12:08,375 --> 00:12:09,375
What?

233
00:12:08,414 --> 00:12:09,414
My husband

234
00:12:08,846 --> 00:12:10,421
did go and stay with him a lot.

235
00:12:11,145 --> 00:12:14,618
Yeah, it's, ~ when I worked in the NICU,

236
00:12:14,618 --> 00:12:18,701
we had a hallway from the Women's Center
to the NICU.

237
00:12:18,701 --> 00:12:23,655
And like just the amount of moms that you
just see walk down that

238
00:12:23,655 --> 00:12:29,539
and they're just depleted from so much
that has transpired before even getting
into

239
00:12:29,539 --> 00:12:33,092
the NICU. And then you get into the NICU
and it can feel like walking into

240
00:12:33,092 --> 00:12:36,004
a war zone and you're not knowing what to
expect.

241
00:12:36,004 --> 00:12:37,004
And there's

242
00:12:36,865 --> 00:12:41,388
words you don't understand and beeps and
it's like there's not really any reprieve.

243
00:12:42,026 --> 00:12:44,437
No, no. Yeah, because it was like,

244
00:12:44,437 --> 00:12:46,939
felt like I was on my own schedule.

245
00:12:46,939 --> 00:12:49,360
The nurses would be like, you can go down
and see your son,

246
00:12:49,360 --> 00:12:51,531
but you have to be up. We have to check
your blood pressure.

247
00:12:51,531 --> 00:12:52,952
You have to take your medicine again.

248
00:12:52,952 --> 00:12:56,554
And so was like, even though I was going
back and forth,

249
00:12:56,554 --> 00:13:02,677
it wasn't, it wasn't the postpartum
experience that I was accustomed to.

250
00:13:02,677 --> 00:13:04,548
And so I'm like, what is this world?

251
00:13:04,548 --> 00:13:09,833
Like, what is this? Like, I just had my
stomach cut open and now

252
00:13:09,833 --> 00:13:11,412
I'm traveling back and forth.

253
00:13:12,150 --> 00:13:16,310
to the NICU and just doing anything to get
there.

254
00:13:16,310 --> 00:13:18,290
So just.

255
00:13:16,558 --> 00:13:18,519
Yeah. And it's like

256
00:13:18,519 --> 00:13:22,113
the providers and nurses can come talk to
you and then you're in the NICU,

257
00:13:22,113 --> 00:13:25,016
but it's like how much are you actually
comprehending because you're thinking of,

258
00:13:25,016 --> 00:13:28,293
like you're absorbed by the amount of pain
that you're in or

259
00:13:28,266 --> 00:13:29,266
Right.

260
00:13:28,293 --> 00:13:29,293
the experience

261
00:13:29,184 --> 00:13:31,983
or like how sweaty you are, like all of
those things.

262
00:13:32,279 --> 00:13:35,241
Right. Yeah. Yeah. And for us,

263
00:13:35,241 --> 00:13:39,904
it was, I would say our first week in the
NICU was really tough.

264
00:13:39,904 --> 00:13:43,487
We had, I kept saying like,

265
00:13:43,487 --> 00:13:44,968
we were looking for the angels,

266
00:13:44,968 --> 00:13:48,050
like everyone kept saying, you're going to
have all these angel nurses that

267
00:13:48,050 --> 00:13:51,138
are just going to embrace you and then
bring you in.

268
00:13:51,138 --> 00:13:56,836
And it was like, I don't know if it was
because Tripp was so sick that they were

269
00:13:56,836 --> 00:13:59,858
so focused on making sure he was doing
well.

270
00:14:00,860 --> 00:14:05,134
that like we were just accessories in the
room is kind of how we felt

271
00:14:05,215 --> 00:14:08,378
was like we didn't get like

272
00:14:12,257 --> 00:14:15,458
I just never think of like, who's gonna
grab me and say,

273
00:14:15,458 --> 00:14:20,978
this is your son, be there for him and
here's how you could support him.

274
00:14:20,978 --> 00:14:22,058
And instead

275
00:14:21,624 --> 00:14:22,624
Yeah.

276
00:14:22,058 --> 00:14:24,198
I felt like I was just like looking
through like,

277
00:14:24,198 --> 00:14:26,078
there he is. Like I was scared to touch
him,

278
00:14:26,078 --> 00:14:29,858
I was scared to open like his isolate.

279
00:14:29,858 --> 00:14:32,518
It was just very overwhelming.

280
00:14:33,367 --> 00:14:38,372
Yeah. It's so critical to have that
champion.

281
00:14:38,372 --> 00:14:40,074
And so many people can be like,

282
00:14:40,074 --> 00:14:43,177
I bet this person did it. I bet this
person did it.

283
00:14:43,177 --> 00:14:46,531
But we'd rather there be five people who
make you feel

284
00:14:46,070 --> 00:14:47,070
Right.

285
00:14:46,531 --> 00:14:48,623
that way than the risk of none.

286
00:14:49,204 --> 00:14:55,427
Right, right. Yeah, so was hard because I
would say people kept saying,

287
00:14:55,427 --> 00:14:57,287
you know your child the best. And I'm
like,

288
00:14:57,287 --> 00:14:59,258
do I? Do

289
00:14:58,070 --> 00:14:59,070
Bye.

290
00:14:59,258 --> 00:15:04,661
I know my child the best? I haven't even
gotten to see him like with the

291
00:15:04,301 --> 00:15:05,301
Yeah.

292
00:15:04,661 --> 00:15:06,862
door open of his isolate. So it's like,

293
00:15:06,862 --> 00:15:11,163
how am I supposed to advocate for someone
that

294
00:15:11,163 --> 00:15:14,455
I am separated from?

295
00:15:14,455 --> 00:15:17,206
that was like, I would say also it was
like postpartum.

296
00:15:17,763 --> 00:15:18,763
for sure, yeah.

297
00:15:17,898 --> 00:15:19,079
was like really

298
00:15:19,419 --> 00:15:21,360
playing a role in that for me where it's
like,

299
00:15:21,360 --> 00:15:26,624
what do you do? How do you advocate for

300
00:15:26,638 --> 00:15:31,187
a new baby in a new place that is so
foreign to you?

301
00:15:31,187 --> 00:15:36,551
that, it felt like I was like sucked into
a vacuum of like,

302
00:15:36,515 --> 00:15:37,515
Yeah.

303
00:15:36,551 --> 00:15:37,551
here

304
00:15:37,171 --> 00:15:38,803
you go, but you need to do this,

305
00:15:38,803 --> 00:15:40,138
you need to do that. And I was like,

306
00:15:40,138 --> 00:15:44,496
how, how? Like I need someone to tell me
how,

307
00:15:44,496 --> 00:15:46,568
what is my next step? Like.

308
00:15:47,934 --> 00:15:50,156
As being a mother of like three other
children,

309
00:15:50,156 --> 00:15:53,343
I knew how to mother, but it was like,

310
00:15:53,343 --> 00:15:58,261
how do you help? How do I mother this
child?

311
00:15:58,261 --> 00:15:59,764
So.

312
00:15:59,437 --> 00:16:00,437
How

313
00:16:00,250 --> 00:16:01,513
did you move through that?

314
00:16:02,582 --> 00:16:04,582
I pumped. was like,

315
00:16:04,216 --> 00:16:05,216
Man.

316
00:16:04,642 --> 00:16:06,122
one thing I can do is I can pump.

317
00:16:06,122 --> 00:16:08,662
I was like, they said he needs my breast
milk.

318
00:16:08,662 --> 00:16:11,942
Gotcha. So was like, I will pump and pump
and pump.

319
00:16:11,942 --> 00:16:16,242
And so that was like how I knew that I was
supporting him.

320
00:16:16,242 --> 00:16:22,902
And it did feel like those days of just
sitting at the pump around the clock.

321
00:16:22,902 --> 00:16:25,642
He was like, okay, this is what mom can
do.

322
00:16:25,642 --> 00:16:30,062
This is what mom can do until mom can
figure out what to do next.

323
00:16:30,062 --> 00:16:31,582
So.

324
00:16:33,590 --> 00:16:36,675
Did you... I like,

325
00:16:36,675 --> 00:16:39,660
I love that you had... I'm going to talk
so candidly.

326
00:16:39,660 --> 00:16:41,192
I love that you were able to...

327
00:16:41,192 --> 00:16:45,649
Because you and I promised we're not going
to sugarcoat this experience.

328
00:16:44,459 --> 00:16:45,459
Yeah.

329
00:16:45,649 --> 00:16:46,649
~

330
00:16:49,087 --> 00:16:51,618
Were you able to get sleep when you were
pumping around the clock?

331
00:16:53,558 --> 00:16:55,358
Honestly, I would fall asleep pumping.

332
00:16:55,991 --> 00:16:56,991
Yeah.

333
00:16:56,618 --> 00:17:01,398
I would wake up to like my pumps full of
milk and just like spilling

334
00:17:01,398 --> 00:17:03,378
out because I was so exhausted.

335
00:17:03,378 --> 00:17:08,338
But it was like, I knew I needed to keep
my supply.

336
00:17:08,338 --> 00:17:14,618
And so I just would just pass out pumping
literally while I was still admitted

337
00:17:14,618 --> 00:17:17,138
in the hospital whenever I would be in his
room.

338
00:17:17,622 --> 00:17:19,944
because at the time he was in a private,

339
00:17:19,944 --> 00:17:22,986
in the level three, was a private NICU
room.

340
00:17:22,986 --> 00:17:25,819
And so I would just be in the recliner,

341
00:17:25,819 --> 00:17:28,431
like pumping and just out.

342
00:17:28,077 --> 00:17:29,077
Thank

343
00:17:29,332 --> 00:17:31,394
But yeah, that was.

344
00:17:32,107 --> 00:17:36,036
When do you think the first person was in
the NICU to come like see

345
00:17:36,036 --> 00:17:38,781
you not doing well and support you?

346
00:17:43,040 --> 00:17:46,472
I mean, that's hard. It's hard to even
pinpoint that.

347
00:17:46,472 --> 00:17:50,592
The whole time that we were in that level
three NICU,

348
00:17:50,592 --> 00:17:54,897
I would say when Tripp was considered
respiratory critical.

349
00:17:59,036 --> 00:18:01,767
We had some very scary moments,

350
00:18:01,767 --> 00:18:04,728
but it was like we were not again.

351
00:18:04,728 --> 00:18:09,871
It wasn't until we moved to the level four
NICU and he moved over there when

352
00:18:09,871 --> 00:18:15,793
he was 33 weeks adjusted that I had a
nurse like

353
00:18:15,793 --> 00:18:22,226
hug me. And because I was just a mess that
we were moving

354
00:18:22,226 --> 00:18:25,726
to a higher acuity and

355
00:18:24,417 --> 00:18:25,417
Yeah.

356
00:18:26,976 --> 00:18:32,681
because he still wasn't able to breathe on
his own or he wasn't able to wean

357
00:18:32,681 --> 00:18:35,993
off of the support like they had hoped
that he would by that time.

358
00:18:35,993 --> 00:18:39,056
And she just hugged me and was like,

359
00:18:39,056 --> 00:18:42,429
we've got your son, like you're gonna be
okay over here.

360
00:18:42,429 --> 00:18:47,943
And it was just like, ~ and so I was able

361
00:18:47,943 --> 00:18:53,758
to start breathing to where the close,

362
00:18:53,758 --> 00:18:56,090
guess it was also like we were out of a

363
00:18:56,404 --> 00:19:01,235
confined room. So we went from a confined
like single NICU,

364
00:19:01,235 --> 00:19:03,476
which we thought initially was going to be
the dream.

365
00:19:03,476 --> 00:19:05,907
Like we have a private NICU space.

366
00:19:04,375 --> 00:19:07,026
Mm-hmm. Mm-hmm.

367
00:19:05,907 --> 00:19:07,247
Like, look, this

368
00:19:07,247 --> 00:19:09,838
is fantastic. We have a place to store our
things,

369
00:19:09,838 --> 00:19:16,000
the bed. Like it just felt like you were
in the space to be.

370
00:19:16,000 --> 00:19:18,780
But then when you're in that room by
yourself,

371
00:19:18,780 --> 00:19:23,862
day in and day out, that those walls kind
of start closing in on you.

372
00:19:25,014 --> 00:19:26,014
So

373
00:19:25,234 --> 00:19:27,014
then when we moved to the level four NICU,

374
00:19:27,014 --> 00:19:29,934
it was an open pod style NICU.

375
00:19:29,934 --> 00:19:31,394
So there was babies everywhere,

376
00:19:31,394 --> 00:19:32,674
there was families everywhere,

377
00:19:32,674 --> 00:19:35,454
there was nurses everywhere, doctors
everywhere,

378
00:19:35,454 --> 00:19:40,474
passing through to where you get
acknowledged,

379
00:19:40,474 --> 00:19:43,014
you get seen, like your child gets
acknowledged,

380
00:19:43,014 --> 00:19:46,074
like any alarms, there's always someone
there.

381
00:19:46,074 --> 00:19:49,694
Whereas I felt kind of before that it was
like,

382
00:19:49,694 --> 00:19:52,254
you're just in there. And if you're like,

383
00:19:52,254 --> 00:19:54,254
you poke out, maybe then you'll see
reality,

384
00:19:54,254 --> 00:19:55,254
but.

385
00:19:55,134 --> 00:19:56,975
you just get consumed in those walls,

386
00:19:56,975 --> 00:19:59,037
I felt like. So it's like when we moved,

387
00:19:59,037 --> 00:20:02,879
I remember thinking this is where we're
supposed to be.

388
00:20:02,879 --> 00:20:09,604
And as frightening as it was for us to go
up in a higher level of acuity,

389
00:20:09,604 --> 00:20:14,468
I mean, I cried the entire transfer over
to the other NICU

390
00:20:15,048 --> 00:20:17,930
of he's not improving. We're doing worse.

391
00:20:17,930 --> 00:20:19,491
Like this is

392
00:20:19,095 --> 00:20:20,095
Yeah.

393
00:20:19,491 --> 00:20:21,432
where we spiral was kind of my thoughts.

394
00:20:21,432 --> 00:20:22,432
And then it was

395
00:20:21,731 --> 00:20:22,731
Yeah.

396
00:20:22,183 --> 00:20:23,444
like, we met with

397
00:20:23,766 --> 00:20:27,146
the nurses of like, you're gonna be okay
over here.

398
00:20:27,146 --> 00:20:30,446
Like we've got you. So

399
00:20:28,801 --> 00:20:30,072
Wow, huge.

400
00:20:30,446 --> 00:20:31,446
yeah.

401
00:20:31,354 --> 00:20:37,239
I'm sorry it took so long for that to
happen and it's just devastating because

402
00:20:38,501 --> 00:20:43,886
yeah, for so many reasons. I had the same
thought,

403
00:20:43,886 --> 00:20:47,529
~ which is like, you think I would know
better,

404
00:20:47,529 --> 00:20:52,794
but when I was in the NICU, we had both
open bay and single rooms.

405
00:20:53,729 --> 00:20:56,420
And I remember thinking like, ~ there need
to be more single rooms

406
00:20:56,420 --> 00:21:01,042
so that families can stay longer and they
can have their privacy.

407
00:21:01,042 --> 00:21:04,313
then you learn, and the speech therapist
told me,

408
00:21:04,313 --> 00:21:07,184
she was like, well, then they're not as
exposed to as much language

409
00:21:07,485 --> 00:21:10,526
and they don't get to hear as much and
there's less eyes on them.

410
00:21:10,526 --> 00:21:14,107
And you're not nodding to other parents
that you see walk by.

411
00:21:14,107 --> 00:21:19,430
And like, it's so true that it's until
you're in an experience,

412
00:21:19,430 --> 00:21:20,550
you

413
00:21:19,744 --> 00:21:20,744
Yeah.

414
00:21:20,550 --> 00:21:22,191
really can't speak on the topic,

415
00:21:22,191 --> 00:21:23,191
right?

416
00:21:23,063 --> 00:21:24,063
for what it's like.

417
00:21:25,895 --> 00:21:29,399
Yeah, I mean, it's, and like I,

418
00:21:29,399 --> 00:21:33,063
like we describe everything as like
post-neck and pre-neck.

419
00:21:33,063 --> 00:21:37,208
So those were, that level three NICU was
his pre-neck.

420
00:21:37,208 --> 00:21:41,333
And so was like that experience for us was
a different world.

421
00:21:41,333 --> 00:21:43,235
Like it was just a different world.

422
00:21:45,335 --> 00:21:46,917
So you and I know what neck is,

423
00:21:46,917 --> 00:21:51,241
but can you help explain what neck is and
why they're concerned about that

424
00:21:51,241 --> 00:21:55,666
and the NICU and some things that ~
symptoms that pop up to say that neck

425
00:21:55,666 --> 00:21:56,666
may be happening?

426
00:21:56,822 --> 00:22:01,622
Yeah, yeah. So we were initially exposed
to neck very nonchalantly.

427
00:22:01,622 --> 00:22:08,242
We were approached by a woman in my
antepartum room actually

428
00:22:08,242 --> 00:22:13,622
and she was like, we are doing a study of
collecting for premature babies that

429
00:22:13,622 --> 00:22:18,102
are vulnerable to contact contracting and
developing neck.

430
00:22:18,102 --> 00:22:20,202
And we're like, what is that? And she's
like,

431
00:22:20,202 --> 00:22:22,682
neck is necrotizing enter colitis.

432
00:22:22,682 --> 00:22:23,942
And that means

433
00:22:24,688 --> 00:22:27,410
dying of the intestines, like as simple as
that.

434
00:22:27,410 --> 00:22:32,334
The intestines will just die off in
premature babies and they don't know why,

435
00:22:32,334 --> 00:22:34,906
they don't know what causes it,

436
00:22:34,906 --> 00:22:40,050
they cannot pinpoint what is going to lead
up to a baby developing this.

437
00:22:40,050 --> 00:22:42,952
They just, it's when it hits, it hits.

438
00:22:42,952 --> 00:22:47,516
And so some of the warning signs are like
inability

439
00:22:47,516 --> 00:22:50,548
to maintain like their feeds.

440
00:22:51,030 --> 00:22:55,273
~ It could be issues with stooling because
it can,

441
00:22:55,273 --> 00:22:59,515
instead of the body able to dispel the
stool,

442
00:22:59,515 --> 00:23:01,957
it can be released in the abdomen.

443
00:23:01,957 --> 00:23:05,809
They can have bilious vomit,

444
00:23:05,809 --> 00:23:09,161
which is like a very green vomit.

445
00:23:09,161 --> 00:23:12,964
And also bloating of the stomach.

446
00:23:12,964 --> 00:23:16,566
And for Tripp, he was always bloated.

447
00:23:17,194 --> 00:23:23,158
because he was on Nip-V, which is ~ the
pressure intubation.

448
00:23:23,158 --> 00:23:25,119
So instead of him actually being
intubated,

449
00:23:25,119 --> 00:23:28,591
which kind of bypasses the gut and just
goes straight to the airway,

450
00:23:28,591 --> 00:23:35,386
his was always, I said, putting some type
of air into his belly,

451
00:23:35,386 --> 00:23:39,529
which was giving it that look of always
being swollen.

452
00:23:39,529 --> 00:23:41,522
And so...

453
00:23:42,314 --> 00:23:45,276
I feel like that was something that we may
have missed and maybe doctors

454
00:23:45,276 --> 00:23:48,334
may have like excused it as he's on Nip B,

455
00:23:48,334 --> 00:23:52,960
that's kind of a part of it. Hard to say
what it could be.

456
00:23:52,960 --> 00:23:57,753
So he had two instances where they had
stopped feeds and put him

457
00:23:57,753 --> 00:24:03,846
on antibiotics to try. And he was never
like confirmed that it was neck,

458
00:24:03,846 --> 00:24:09,989
but it was like suspected and then resumed
feeds and everything just keeps on going.

459
00:24:12,106 --> 00:24:15,532
And then whenever he did get severe neck,

460
00:24:15,532 --> 00:24:20,621
and that's like where it's considered a
surgical issue and not just

461
00:24:20,621 --> 00:24:25,310
an antibiotic procedure was what almost
took his life.

462
00:24:29,513 --> 00:24:33,516
Neck is probably one of the scariest words
in the NICU to hear.

463
00:24:33,516 --> 00:24:37,231
And yeah, when your son,

464
00:24:37,231 --> 00:24:40,554
the other things like the symptoms you're
talking about are like

465
00:24:41,406 --> 00:24:45,137
normal. Right, Yeah.

466
00:24:41,575 --> 00:24:44,558
not keeping down heat. Yeah, like NICU
symptoms,

467
00:24:44,558 --> 00:24:46,560
symptoms of being a premature baby.

468
00:24:46,560 --> 00:24:48,071
So it's

469
00:24:48,071 --> 00:24:53,887
so important for the team and parents to
stay vigilant in it.

470
00:24:53,546 --> 00:24:54,546
Right.

471
00:24:55,137 --> 00:24:57,269
when it becomes a surgery situation,

472
00:24:57,269 --> 00:24:59,732
it becomes an emergent surgery situation.

473
00:24:59,478 --> 00:25:00,478
Right.

474
00:24:59,732 --> 00:25:00,732
And

475
00:25:00,532 --> 00:25:02,204
it's like, ~ things are happening.

476
00:25:02,204 --> 00:25:04,176
It's probably similar to your C-section,

477
00:25:04,176 --> 00:25:05,678
right? Like we're not waiting,

478
00:25:05,678 --> 00:25:07,820
this is going now. And

479
00:25:07,254 --> 00:25:08,254
Alright.

480
00:25:07,980 --> 00:25:10,923
you truly just hope and pray that they
make it out of surgery.

481
00:25:11,542 --> 00:25:16,494
Right, yeah. mean, was, before pre-neck,

482
00:25:16,494 --> 00:25:18,745
we had never stayed with Tripp overnight.

483
00:25:18,745 --> 00:25:22,346
And if we did, it would just be kind of
into the early hours,

484
00:25:22,346 --> 00:25:27,818
like 1, 2 a.m., like if I had like fallen
asleep in the recliner or something,

485
00:25:27,818 --> 00:25:30,630
but it was never intentionally let's stay
the night,

486
00:25:30,630 --> 00:25:33,341
bedside in a recliner. Because

487
00:25:32,353 --> 00:25:33,353
Right.

488
00:25:33,341 --> 00:25:34,931
we're like, the nurses got him.

489
00:25:34,931 --> 00:25:35,931
Like,

490
00:25:35,362 --> 00:25:36,362
Yeah.

491
00:25:35,652 --> 00:25:37,182
what can we do while he's sleeping?

492
00:25:37,182 --> 00:25:40,914
And we kind of felt like we needed our
rest and to recover.

493
00:25:41,399 --> 00:25:42,399
Yeah.

494
00:25:41,622 --> 00:25:42,622
And

495
00:25:41,982 --> 00:25:46,522
so a normal night, like my husband and I
were both up there.

496
00:25:46,522 --> 00:25:48,682
My in-laws had our other kids.

497
00:25:48,682 --> 00:25:54,282
And so we, on the weekends, we like to
have like him and I both go at the same
time,

498
00:25:54,282 --> 00:25:57,602
because we always had to switch off
because we have three other children.

499
00:25:57,602 --> 00:26:00,302
And so the weekends, it was nice.

500
00:26:00,302 --> 00:26:02,502
So we would get to be there together.

501
00:26:02,502 --> 00:26:07,582
And so I remember we like talked a bit and
it was like,

502
00:26:07,582 --> 00:26:09,762
okay, bye Tripp. See you tomorrow.

503
00:26:09,762 --> 00:26:10,762
I was like.

504
00:26:11,094 --> 00:26:17,454
not thinking like he's unwell in the
slightest and it was probably seven eight

505
00:26:17,454 --> 00:26:22,234
o'clock at night like when we left um and
then

506
00:26:22,234 --> 00:26:27,954
i went home and i pumped i was like okay
let me go ahead and pump

507
00:26:27,954 --> 00:26:32,414
and i remember i was sitting in arby klein
or pumping and i was like i need

508
00:26:32,414 --> 00:26:38,194
a call trip but i was like oh i didn't
because it was at like one

509
00:26:38,194 --> 00:26:40,762
of the feeding times so like the three
hours and so was like

510
00:26:40,493 --> 00:26:41,493
Yeah.

511
00:26:41,600 --> 00:26:46,034
They're doing feed right now. I had gotten
kind of my finger,

512
00:26:46,034 --> 00:26:48,957
like, not really, like, they're just like,

513
00:26:48,957 --> 00:26:51,529
this is feeding time. This is this time.

514
00:26:51,529 --> 00:26:53,341
Like, can you call back in another hour?

515
00:26:53,341 --> 00:26:54,341
And so

516
00:26:53,923 --> 00:26:54,923
Okay.

517
00:26:54,410 --> 00:26:57,004
I was like, I'm not going to call it that
time again,

518
00:26:57,004 --> 00:27:00,087
because they're busy. I

519
00:26:59,649 --> 00:27:00,649
Yeah.

520
00:27:00,087 --> 00:27:06,010
will wait an hour. And then I fell asleep
and the recliner pumping and

521
00:27:04,994 --> 00:27:05,994
Yeah.

522
00:27:06,010 --> 00:27:07,312
I

523
00:27:07,774 --> 00:27:09,514
woke up a couple hours later and I'm like,

524
00:27:09,514 --> 00:27:11,625
I still have a cold trip. And it was
feeding time again.

525
00:27:11,625 --> 00:27:15,885
And I'm like, I'm not going to call
because I'm going to interrupt them while

526
00:27:15,885 --> 00:27:19,317
they're taking care of him that I need
them to be doing and all the other

527
00:27:19,042 --> 00:27:20,042
Yeah.

528
00:27:19,317 --> 00:27:26,159
babies. And then it was an hour later at
1am and I get a call from when

529
00:27:26,159 --> 00:27:30,800
they called me. And I remember the doctor
saying like,

530
00:27:30,800 --> 00:27:36,762
this is doc, doctor so and so I'm with
your son and he's intubated now.

531
00:27:38,814 --> 00:27:40,295
And I'm like, what do mean he's intubated?

532
00:27:40,295 --> 00:27:43,628
I'm like, why did you intubate my son?

533
00:27:43,628 --> 00:27:46,999
That was like the first, that's all I
heard was your son is intubated.

534
00:27:46,999 --> 00:27:48,687
And I woke my husband up and I'm like,

535
00:27:48,687 --> 00:27:51,443
they just intubated Tripp. And

536
00:27:50,808 --> 00:27:51,808
Yeah.

537
00:27:51,443 --> 00:27:53,115
he's like, what do mean they intubated
him?

538
00:27:53,115 --> 00:27:56,487
And was like, just woke us up like in a
panic.

539
00:27:56,487 --> 00:28:02,392
And he's like, your son just developed ~
severe necrotizing the tricholitis.

540
00:28:02,392 --> 00:28:05,474
You need to be here. He may not make it
much longer.

541
00:28:07,870 --> 00:28:10,162
And I'm like, do what? What

542
00:28:09,706 --> 00:28:10,706
Yeah.

543
00:28:10,162 --> 00:28:12,594
do you mean? First it was like,

544
00:28:12,594 --> 00:28:14,196
even him telling me that, I'm like,

545
00:28:14,196 --> 00:28:15,697
what?

546
00:28:16,279 --> 00:28:17,279
Yeah.

547
00:28:16,698 --> 00:28:19,320
I just saw my son. I

548
00:28:19,020 --> 00:28:20,020
Yeah.

549
00:28:19,320 --> 00:28:24,033
just saw him. What do you mean he might
not make it for me to get there?

550
00:28:24,033 --> 00:28:28,698
And so I just threw clothes on and I just
ran out the door.

551
00:28:28,698 --> 00:28:32,290
And when I saw my son,

552
00:28:32,290 --> 00:28:35,004
he looked like he was God.

553
00:28:36,852 --> 00:28:38,567
And I was like, who is this baby?

554
00:28:38,567 --> 00:28:40,383
This is not my child.

555
00:28:46,900 --> 00:28:49,212
because that was not the child that I just
saw.

556
00:28:49,212 --> 00:28:52,824
It had done so much to him. mean,

557
00:28:52,824 --> 00:28:55,816
was like to be like Frank, he was blue.

558
00:28:55,816 --> 00:29:01,090
He was what they say modeled. They

559
00:29:01,090 --> 00:29:07,304
had like given him the paralytics and
everything for the intubation and

560
00:29:07,234 --> 00:29:08,234
Yeah.

561
00:29:08,605 --> 00:29:12,708
it was shocking. Like I was not prepared
for that.

562
00:29:12,708 --> 00:29:15,130
So. ~

563
00:29:13,087 --> 00:29:14,087
No.

564
00:29:15,390 --> 00:29:16,812
Had he been to surgery yet?

565
00:29:17,622 --> 00:29:19,942
No, so they

566
00:29:19,942 --> 00:29:23,742
did not feel that he could survive moving
him to the OR.

567
00:29:23,742 --> 00:29:26,902
And so they brought the OR to him.

568
00:29:26,902 --> 00:29:31,042
So they did, as we're standing there,

569
00:29:31,042 --> 00:29:36,902
they're bringing in all of the OR carts
and it's just pulling

570
00:29:36,902 --> 00:29:38,702
and they're blocking the entire,

571
00:29:38,702 --> 00:29:41,482
his pod, like little cube off.

572
00:29:41,944 --> 00:29:42,944
Yeah.

573
00:29:42,402 --> 00:29:45,242
And it's the OR techs.

574
00:29:45,384 --> 00:29:48,875
like surgical techs, I they're just
unloading everything and just

575
00:29:49,435 --> 00:29:53,617
as my husband ended up getting there
shortly after he dropped the kids

576
00:29:53,617 --> 00:30:00,219
off with his parents and it was just like
you feel like you're

577
00:30:00,219 --> 00:30:01,399
standing in a movie

578
00:30:01,761 --> 00:30:02,761
Yeah.

579
00:30:02,400 --> 00:30:08,622
because so much was happening as we're
just holding him like what is this world?

580
00:30:13,059 --> 00:30:17,665
Are you glad you were there watching all
of that happen?

581
00:30:18,272 --> 00:30:19,272
God.

582
00:30:19,107 --> 00:30:22,250
As hard as it is to probably remember and
to be there.

583
00:30:22,250 --> 00:30:25,955
Why do you think that? Why do think you're
happy you were there?

584
00:30:28,769 --> 00:30:29,950
And happy is the wrong word.

585
00:30:30,370 --> 00:30:31,370
Right?

586
00:30:31,190 --> 00:30:35,702
I'm... This is like where we saw kind of
God start moving.

587
00:30:35,702 --> 00:30:40,973
And as I'm crying and we're signing papers

588
00:30:41,233 --> 00:30:46,575
and several people that we had to speak to
like the anesthesiologist,

589
00:30:46,575 --> 00:30:51,526
the doctor, ~ some other techs came by and
we're just kind of talking

590
00:30:51,526 --> 00:30:54,877
to us because we were just crying watching

591
00:30:53,889 --> 00:30:54,889
Yeah.

592
00:30:54,917 --> 00:30:58,258
what's going on and everyone kept telling
us,

593
00:30:58,258 --> 00:30:59,258
your son...

594
00:30:59,422 --> 00:31:01,485
is probably not going to make it through
this surgery.

595
00:31:01,485 --> 00:31:05,533
I need you to be prepared that he's not
going to make it through this surgery.

596
00:31:05,533 --> 00:31:09,640
So it was like,

597
00:31:09,640 --> 00:31:13,126
we were preparing that this were his last
moments.

598
00:31:14,049 --> 00:31:15,049
Yeah.

599
00:31:16,674 --> 00:31:19,656
And so was like, if this is going to be
the last,

600
00:31:19,656 --> 00:31:22,719
I'm glad that I'm not outside.

601
00:31:22,719 --> 00:31:23,840
Like

602
00:31:23,277 --> 00:31:24,277
Yeah.

603
00:31:23,940 --> 00:31:27,443
in an OR situation, we wouldn't be there.

604
00:31:25,666 --> 00:31:28,129
Mm-hmm. Yeah.

605
00:31:27,443 --> 00:31:28,534
I wouldn't

606
00:31:28,534 --> 00:31:32,127
get to be holding his hands in those last
moments.

607
00:31:32,127 --> 00:31:34,388
It was really like how it was.

608
00:31:34,679 --> 00:31:35,679
Right.

609
00:31:35,790 --> 00:31:37,771
And then we had one surgical tech.

610
00:31:37,771 --> 00:31:43,296
She just saw me just crying and I'm
praying and she grabbed me and she was
like,

611
00:31:43,296 --> 00:31:45,938
we are going to pray over this family and
over Tripp.

612
00:31:47,934 --> 00:31:54,056
And she stopped everyone. And she said the
most beautiful prayer over

613
00:31:54,256 --> 00:31:57,577
our son and our family. And I was like,

614
00:31:57,577 --> 00:32:01,738
that right there, it was like,

615
00:32:01,738 --> 00:32:07,710
gave me peace. And I could breathe knowing
that God's hand

616
00:32:07,710 --> 00:32:09,090
was here and

617
00:32:08,823 --> 00:32:09,823
Mm.

618
00:32:09,090 --> 00:32:11,130
that he was going to take care of Tripp.

619
00:32:11,130 --> 00:32:14,962
And it was like, okay, okay.

620
00:32:14,962 --> 00:32:16,572
And it was like, we got to

621
00:32:16,736 --> 00:32:19,568
kind of, we were holding everything with
such a tight grip.

622
00:32:19,568 --> 00:32:23,361
And it allowed us to just, okay,

623
00:32:23,107 --> 00:32:24,107
Thank

624
00:32:23,361 --> 00:32:24,361
it's

625
00:32:23,612 --> 00:32:26,654
in God's hands. There's not a thing we can
do.

626
00:32:26,654 --> 00:32:29,937
And it was, we were able to like,

627
00:32:29,937 --> 00:32:33,360
peacefully walk away and wait.

628
00:32:32,781 --> 00:32:33,781
Mm-hmm.

629
00:32:34,941 --> 00:32:40,786
And so that to me, like, we started seeing
God in that moment.

630
00:32:41,379 --> 00:32:42,379
Mm.

631
00:32:41,987 --> 00:32:45,850
And it was another woman walked by us in
the waiting room.

632
00:32:46,248 --> 00:32:48,360
And she was like, I don't know what you're
going through.

633
00:32:48,360 --> 00:32:52,074
I'm going to pray with you. And it was
just like,

634
00:32:51,682 --> 00:32:52,682
Yeah.

635
00:32:52,074 --> 00:32:54,406
people just stopped and would just pray
for us.

636
00:32:54,406 --> 00:32:58,531
And at that point, I wasn't just like
bawling my eyes out,

637
00:32:58,531 --> 00:33:02,635
but it was like they, they listened to the
call of God

638
00:33:02,819 --> 00:33:03,819
Mm.

639
00:33:03,476 --> 00:33:06,619
saying, go and pray with that family.

640
00:33:06,755 --> 00:33:07,755
Yeah.

641
00:33:07,720 --> 00:33:09,322
So it's just, we started.

642
00:33:12,840 --> 00:33:14,246
When you are in those moments,

643
00:33:14,246 --> 00:33:16,225
you want to have control.

644
00:33:18,574 --> 00:33:21,455
And it was like God telling us like,

645
00:33:21,455 --> 00:33:25,099
I've got this, I've got you. I'm not going
to let you go.

646
00:33:25,443 --> 00:33:26,443
Mm.

647
00:33:25,974 --> 00:33:27,621
And that we could hand it over.

648
00:33:27,621 --> 00:33:29,434
So.

649
00:33:31,595 --> 00:33:34,789
It was like truly that angel that you were
talking about that you were going

650
00:33:34,590 --> 00:33:35,590
Yeah.

651
00:33:34,789 --> 00:33:35,789
to meet is

652
00:33:35,331 --> 00:33:36,331
that scrub tech.

653
00:33:36,755 --> 00:33:37,755
Yeah.

654
00:33:38,517 --> 00:33:40,671
I love that she did that because that

655
00:33:40,671 --> 00:33:42,053
it's kind of a gutsy move.

656
00:33:42,580 --> 00:33:43,687
Yeah, I know.

657
00:33:44,927 --> 00:33:48,585
It's a gutsy move to take control like
that.

658
00:33:47,636 --> 00:33:48,730
Yeah. ~

659
00:33:49,467 --> 00:33:51,631
But meaningful and purposeful in so many
ways.

660
00:33:54,707 --> 00:33:58,006
Who was the one to tell you that he got
through the surgery?

661
00:33:59,158 --> 00:34:04,491
So it was the charge nurse. So she had
kind of hung on and she was like,

662
00:34:04,491 --> 00:34:08,803
I'm going to update you as he is having
his surgery.

663
00:34:08,803 --> 00:34:11,825
And so she would keep us updated on his
heart rate.

664
00:34:11,825 --> 00:34:13,998
I his heart rate stayed above 200,

665
00:34:13,998 --> 00:34:15,627
like the entire time. So she was like,

666
00:34:15,627 --> 00:34:17,248
he still has really high heart rate.

667
00:34:17,248 --> 00:34:22,291
And that he had finished surgery,

668
00:34:22,291 --> 00:34:24,812
but that wasn't his only surgery.

669
00:34:24,812 --> 00:34:27,074
And so we just knew.

670
00:34:27,926 --> 00:34:30,546
That was the initial to just see,

671
00:34:30,546 --> 00:34:33,166
that was, they called it the exploratory,

672
00:34:33,166 --> 00:34:38,586
um, bowel resection. They just needed to
see what was inside,

673
00:34:38,586 --> 00:34:41,546
like what was like attacking his body.

674
00:34:41,546 --> 00:34:47,146
Um, and so she came in and let us know
that he did make

675
00:34:47,146 --> 00:34:52,366
it through surgery and that we would need
to wait to speak with the surgeon.

676
00:34:52,366 --> 00:34:56,246
And then when we spoke with the surgeon
shortly after,

677
00:34:56,246 --> 00:34:57,386
I mean, it was grim.

678
00:34:58,422 --> 00:34:59,422
It

679
00:34:58,562 --> 00:35:04,202
was still very grim. He had told us that
he had left Tripp with about

680
00:35:04,202 --> 00:35:08,142
100 centimeters of bowel that was gray,

681
00:35:08,142 --> 00:35:13,022
which is dead. And most babies,

682
00:35:13,022 --> 00:35:16,042
newborn babies and infants have around
200,

683
00:35:16,042 --> 00:35:21,402
250 centimeters of bowel. So he had at
that point lost about 50 % of his bowel.

684
00:35:21,402 --> 00:35:27,882
And so he said he was gonna leave that
inside of him and

685
00:35:28,340 --> 00:35:31,632
He just kind of sewed him up is what he
said.

686
00:35:31,632 --> 00:35:34,574
And he was like, we'll revisit once he is
more stable.

687
00:35:34,574 --> 00:35:38,997
They're like, we need him to be more
stable to see if the rest of

688
00:35:38,997 --> 00:35:42,499
his bowel would revive itself.

689
00:35:42,499 --> 00:35:47,222
He said, sometimes the body can do amazing
things or if it will just continue

690
00:35:47,222 --> 00:35:52,185
to necrotize and die off. And so we

691
00:35:52,185 --> 00:35:54,418
had three days of...

692
00:35:57,468 --> 00:36:00,210
It felt like torture. Because

693
00:35:58,935 --> 00:35:59,935
Yeah.

694
00:36:00,210 --> 00:36:05,102
you were just waiting because he still was
very much sedated.

695
00:36:05,102 --> 00:36:10,851
He was on every imaginable blood pressure
medicine,

696
00:36:10,851 --> 00:36:16,208
so he needed consistent pressors to keep
his blood pressure up.

697
00:36:16,208 --> 00:36:22,491
He was getting platelets, plasma and blood
every 12 hours.

698
00:36:22,491 --> 00:36:26,954
So he was getting constantly pumped with

699
00:36:28,391 --> 00:36:30,202
blood products, like it was around the
clock.

700
00:36:30,202 --> 00:36:32,473
So once one would finish infusing,

701
00:36:32,473 --> 00:36:36,106
then it would go to plasma, then it would
go to red blood cells,

702
00:36:36,106 --> 00:36:37,867
and then it would go back to platelets.

703
00:36:37,867 --> 00:36:41,660
I mean, he just was requiring a lot of
support.

704
00:36:41,660 --> 00:36:47,634
And once they had felt they had gotten

705
00:36:47,634 --> 00:36:51,246
him more stabilized, again, he was not
stable,

706
00:36:51,246 --> 00:36:54,230
even in the eyes of being able to go to
the OR,

707
00:36:54,230 --> 00:36:55,230
they

708
00:36:54,722 --> 00:36:55,722
Yeah.

709
00:36:55,169 --> 00:36:56,820
decided to do another bedside.

710
00:36:57,270 --> 00:37:03,330
surgery and so 34 weeks.

711
00:36:58,819 --> 00:37:01,839
Okay. Remind me how many weeks he was at
this point?

712
00:37:01,839 --> 00:37:03,479
34.

713
00:37:03,779 --> 00:37:06,839
Okay. And so you're just a week into your
new hospital here.

714
00:37:06,839 --> 00:37:07,859
Okay.

715
00:37:07,456 --> 00:37:08,456
Yeah,

716
00:37:08,307 --> 00:37:14,952
yeah. And so when they went in for the
second surgery,

717
00:37:14,952 --> 00:37:19,856
it wasn't so much as your son might not
survive this,

718
00:37:19,856 --> 00:37:25,080
but it was your son could lose everything
in his gut from this.

719
00:37:25,080 --> 00:37:27,622
Like that's the worst case scenario that
they're seeing.

720
00:37:27,622 --> 00:37:32,406
And so it was just another waiting.

721
00:37:32,758 --> 00:37:35,018
And when they do these bedside surgeries,

722
00:37:35,018 --> 00:37:40,418
they shut the NICU down. So no visitors or
any of the other babies can go in.

723
00:37:40,418 --> 00:37:44,378
And I remember seeing like moms going up
to the door to like come

724
00:37:44,378 --> 00:37:47,018
in and they're like, I can't see my baby.

725
00:37:47,018 --> 00:37:49,678
And I'm like, it's because mine,

726
00:37:49,678 --> 00:37:51,378
we're trying to keep my baby alive.

727
00:37:51,378 --> 00:37:54,378
So was like, it's for us,

728
00:37:53,729 --> 00:37:55,562
Yeah. Yeah.

729
00:37:54,378 --> 00:37:55,638
sorry. Sorry

730
00:37:55,638 --> 00:37:57,238
for the inconvenience over here.

731
00:37:57,683 --> 00:38:01,087
But I feel like when people start to
realize that they're like,

732
00:38:01,087 --> 00:38:04,250
okay, like I get it. You know,

733
00:38:02,282 --> 00:38:04,052
Yeah. Right.

734
00:38:04,250 --> 00:38:05,250
it's like

735
00:38:05,001 --> 00:38:08,295
when you realize your child's surgery is
delayed because there's

736
00:38:08,295 --> 00:38:10,337
an emergency that comes in and you're
like,

737
00:38:10,006 --> 00:38:11,006
Right.

738
00:38:10,878 --> 00:38:14,101
I'm, I, it's one of those things that
yeah,

739
00:38:14,101 --> 00:38:15,703
you just begin to understand.

740
00:38:16,202 --> 00:38:21,326
Yeah, yeah. And so they went in for that
surgery and ended

741
00:38:22,006 --> 00:38:24,628
up having to remove all of, of his,

742
00:38:24,628 --> 00:38:29,912
most of his bowel, of his small
intestines.

743
00:38:29,912 --> 00:38:33,164
And that was again, another lengthy like
five,

744
00:38:33,164 --> 00:38:36,016
six hour surgery at the bedside.

745
00:38:36,016 --> 00:38:39,440
And then as soon as that surgery was
finished,

746
00:38:39,440 --> 00:38:42,561
I mean, we were, I thought the doctor was
gonna come speak to us again

747
00:38:42,561 --> 00:38:43,561
in the waiting room.

748
00:38:43,594 --> 00:38:45,976
the same way he spoke to us the last time.

749
00:38:45,976 --> 00:38:49,218
It felt very informal for that first time,

750
00:38:49,218 --> 00:38:51,609
like, because we were just right there
around other people,

751
00:38:51,609 --> 00:38:54,962
and he just tells us that. But this time
he's like,

752
00:38:54,962 --> 00:38:58,554
come with me. And the whole walk,

753
00:38:58,554 --> 00:39:01,276
I'm thinking, our son died. Our

754
00:39:00,834 --> 00:39:01,834
Yeah.

755
00:39:01,276 --> 00:39:04,408
son died. Why are we being taken to a
private room right now?

756
00:39:04,383 --> 00:39:05,383
Yeah.

757
00:39:04,408 --> 00:39:05,408
When

758
00:39:04,929 --> 00:39:07,491
you just two days ago, or three days ago,

759
00:39:07,491 --> 00:39:09,812
had just told us in a waiting room.

760
00:39:10,232 --> 00:39:11,232
Yeah.

761
00:39:10,493 --> 00:39:12,404
And so the walk to that.

762
00:39:12,630 --> 00:39:18,187
conference room was like that

763
00:39:17,218 --> 00:39:18,218
Yeah.

764
00:39:18,187 --> 00:39:21,270
had me spiraling because it's you don't
know and all you can think

765
00:39:21,270 --> 00:39:25,786
is worst case scenario. ~

766
00:39:21,934 --> 00:39:25,536
You're for sure. You're prepared

767
00:39:25,837 --> 00:39:28,285
for what might happen when you go into
that room.

768
00:39:28,822 --> 00:39:32,378
Right, And so he says...

769
00:39:31,405 --> 00:39:32,907
Did they bring any support

770
00:39:32,907 --> 00:39:35,140
people? This is just the Child Life
Specialist in me,

771
00:39:35,140 --> 00:39:38,043
but did you have anybody, social worker,

772
00:39:38,043 --> 00:39:40,747
chaplain, child life? Okay.

773
00:39:40,576 --> 00:39:41,576
No,

774
00:39:42,747 --> 00:39:48,470
no. So it was two surgeons that sat us
down.

775
00:39:48,470 --> 00:39:54,194
And the surgeon was actually, he's like
one of the chief of international surgery.

776
00:39:54,194 --> 00:39:58,446
So he's like one of the top surgeons at
this hospital.

777
00:39:58,446 --> 00:40:02,278
And so we were blessed that we did have
him.

778
00:40:02,278 --> 00:40:08,081
And he tells us that Tripp did end up
losing

779
00:40:10,762 --> 00:40:15,026
the most of his bowel and he had 12
centimeters of small intestine remaining.

780
00:40:15,026 --> 00:40:18,809
At the time he did have his iliocecal
valve,

781
00:40:18,809 --> 00:40:22,752
which is a very important valve between
the small intestines

782
00:40:22,773 --> 00:40:27,997
and the large intestines. So he did have
that at the time and

783
00:40:28,358 --> 00:40:32,321
all of his colon intact.

784
00:40:32,321 --> 00:40:36,665
And he said, he gave us the option of
comfort care.

785
00:40:36,665 --> 00:40:38,036
He said, trip.

786
00:40:38,482 --> 00:40:39,482
if

787
00:40:38,622 --> 00:40:40,353
you continue fighting for him,

788
00:40:40,353 --> 00:40:41,763
he's gonna have a very hard life.

789
00:40:41,763 --> 00:40:44,684
Your family will struggle with this.

790
00:40:44,684 --> 00:40:48,195
It will not be an easy life. And then he
said,

791
00:40:48,195 --> 00:40:54,276
there's the option of comfort care where
you just let him peacefully finish

792
00:40:54,276 --> 00:40:57,027
his life here. And it was like,

793
00:40:57,027 --> 00:40:59,428
I looked at my husband like, are you
kidding me?

794
00:40:59,428 --> 00:41:04,229
We just got to this day. You told us three
days ago he wasn't gonna live.

795
00:41:04,229 --> 00:41:05,229
And

796
00:41:04,546 --> 00:41:05,546
Yeah.

797
00:41:04,965 --> 00:41:06,310
now you're telling me to let him go?

798
00:41:07,126 --> 00:41:08,126
Yeah.

799
00:41:07,274 --> 00:41:08,274
Like

800
00:41:07,834 --> 00:41:11,096
we really like my husband I really go what
is this world

801
00:41:10,466 --> 00:41:11,466
Yeah.

802
00:41:11,496 --> 00:41:17,018
that that's like we fought for him to get
here and he has fought to

803
00:41:17,018 --> 00:41:18,949
get to here and now you're

804
00:41:18,156 --> 00:41:19,156
Right, we're not.

805
00:41:18,949 --> 00:41:22,620
saying no we don't we don't have an in us
and

806
00:41:22,874 --> 00:41:29,323
I get now why they tell families the grim
side of it

807
00:41:29,559 --> 00:41:30,559
Yeah.

808
00:41:30,344 --> 00:41:34,045
of you don't know how hard it's gonna be
and

809
00:41:33,464 --> 00:41:34,464
Mm.

810
00:41:34,465 --> 00:41:36,146
they want you to be prepared

811
00:41:36,586 --> 00:41:41,008
But in that moment, you could have told me
like

812
00:41:41,717 --> 00:41:42,717
Yeah.

813
00:41:42,148 --> 00:41:43,489
any worst case scenario, I'm like,

814
00:41:43,489 --> 00:41:45,340
absolutely not. I'm going

815
00:41:44,867 --> 00:41:45,867
Right.

816
00:41:45,340 --> 00:41:51,092
to fight for my child as long as he can
continue fighting for his own life too.

817
00:41:51,092 --> 00:41:55,154
Like we're not stopping this. Like he's
ours.

818
00:41:53,224 --> 00:41:56,206
Yeah. You didn't go through the past three
days

819
00:41:56,926 --> 00:42:01,349
to pull the plug now. ~

820
00:41:59,316 --> 00:42:00,316
Right.

821
00:42:01,349 --> 00:42:06,592
You guys were thrown a lot of like worst
case scenarios,

822
00:42:06,592 --> 00:42:10,285
grim scenarios to expect.

823
00:42:15,689 --> 00:42:17,461
What ways were they delivered?

824
00:42:17,461 --> 00:42:22,287
Like were there some that were delivered
in a way that felt more compassionately

825
00:42:22,287 --> 00:42:25,570
than others? And what were those like?

826
00:42:25,570 --> 00:42:28,994
Or were the words themselves just so
shocking that you're just like,

827
00:42:28,994 --> 00:42:32,859
okay, I hear you.

828
00:42:33,479 --> 00:42:37,911
Right. mean, for being so naive to the
medical world,

829
00:42:37,911 --> 00:42:39,282
like

830
00:42:38,381 --> 00:42:39,381
Yeah.

831
00:42:39,582 --> 00:42:43,174
it all felt big and it all felt
overwhelming.

832
00:42:43,174 --> 00:42:48,147
And to be given that information that

833
00:42:50,029 --> 00:42:55,452
your son might not survive or your son
might not live to toddlerhood

834
00:42:55,452 --> 00:42:58,494
or have a life into adulthood,

835
00:42:58,494 --> 00:42:59,494
like

836
00:42:59,762 --> 00:43:01,383
all of those questions, because they're
like,

837
00:43:01,383 --> 00:43:04,574
we don't know what his life will look
like,

838
00:43:04,574 --> 00:43:08,926
but it's going to be hard, was really what
they told us.

839
00:43:08,926 --> 00:43:12,728
it's just, you have to,

840
00:43:12,728 --> 00:43:14,619
it took us a while to sit with that.

841
00:43:14,619 --> 00:43:17,230
And I remember I would talk to all of our
nurses,

842
00:43:17,230 --> 00:43:22,522
like I wanted like other real feedback of
other families.

843
00:43:22,522 --> 00:43:25,833
like, if this is so prevalent in
hospitals,

844
00:43:25,833 --> 00:43:26,833
in NICUs,

845
00:43:28,070 --> 00:43:30,522
Is it this bad? we need to let like,

846
00:43:30,522 --> 00:43:31,973
then it started making me question,

847
00:43:31,973 --> 00:43:35,545
do we need to let him go? Are we being
selfish?

848
00:43:35,545 --> 00:43:36,846
Like

849
00:43:35,938 --> 00:43:36,938
Right.

850
00:43:36,846 --> 00:43:41,489
I questioned that a lot for, cause he was
intubated for a month after

851
00:43:41,489 --> 00:43:47,803
his surgeries and just sitting at his
bedside of just watching him lifeless.

852
00:43:47,803 --> 00:43:51,466
I would cry and think, am I being selfish?

853
00:43:51,693 --> 00:43:52,693
Yeah.

854
00:43:52,487 --> 00:43:57,200
Am I fighting for his life that is going
to be like,

855
00:43:57,480 --> 00:44:00,091
worth like not worthless, but so

856
00:43:59,363 --> 00:44:00,363
Great.

857
00:44:00,091 --> 00:44:03,093
hard for him to have a life of quality.

858
00:44:03,093 --> 00:44:06,515
And so it like, I didn't know what I was
fighting for.

859
00:44:06,515 --> 00:44:11,297
And it started, I wrestled with God so
much of like,

860
00:44:11,297 --> 00:44:14,779
if he needs to go take him,

861
00:44:14,779 --> 00:44:20,022
if his life is going to be so hard for
him,

862
00:44:20,022 --> 00:44:24,515
I don't want to selfishly pray for him to
stay here.

863
00:44:24,515 --> 00:44:27,086
And that was like the

864
00:44:27,296 --> 00:44:28,296
hardest

865
00:44:27,788 --> 00:44:29,477
prayer to pray.

866
00:44:29,845 --> 00:44:33,328
It's like true selflessness.

867
00:44:33,328 --> 00:44:37,142
Like you're such a good mom. You are such
a good mom.

868
00:44:37,142 --> 00:44:38,503
~

869
00:44:41,920 --> 00:44:44,091
but it helped me release, because again,

870
00:44:44,091 --> 00:44:47,272
control. The NICU, you lack

871
00:44:45,332 --> 00:44:46,545
Ugh, no.

872
00:44:47,292 --> 00:44:53,215
so much control, and so you're trying to
just grab at strings to say,

873
00:44:53,215 --> 00:44:57,687
I had a part in this, or I am helping my
child.

874
00:44:57,687 --> 00:45:01,959
And so it was like, am I willing him

875
00:45:01,335 --> 00:45:02,335
Yeah.

876
00:45:02,399 --> 00:45:03,399
to life?

877
00:45:04,194 --> 00:45:05,194
Mm.

878
00:45:06,000 --> 00:45:09,882
And I know I'm not God, and I know the
doctors are not God.

879
00:45:07,777 --> 00:45:10,257
Yeah. Right.

880
00:45:10,866 --> 00:45:16,007
And so it's like, what, and that prayer
was when I finally just said,

881
00:45:16,007 --> 00:45:20,239
God, he is yours. He

882
00:45:19,468 --> 00:45:20,468
Mm-hmm.

883
00:45:20,239 --> 00:45:22,029
is yours. He is yours.

884
00:45:22,594 --> 00:45:23,594
Yeah.

885
00:45:24,010 --> 00:45:27,190
Lead with him and we will follow.

886
00:45:27,190 --> 00:45:32,132
We will fight. We will do everything in
our power for his life

887
00:45:32,432 --> 00:45:34,393
to glorify you was

888
00:45:33,857 --> 00:45:34,857
Hmm.

889
00:45:34,393 --> 00:45:36,673
really the prayers at his bedside.

890
00:45:37,130 --> 00:45:38,130
Yeah.

891
00:45:39,033 --> 00:45:42,567
And it's, they tell you any NICU family,

892
00:45:42,567 --> 00:45:47,003
like the baby is going to tell us what
they need and lead the way.

893
00:45:46,410 --> 00:45:47,862
He's boss. Right.

894
00:45:47,003 --> 00:45:48,285
And

895
00:45:48,285 --> 00:45:50,938
like Tripp is doing that, you know,

896
00:45:50,938 --> 00:45:54,162
so it's like as hard as you're fighting
and the doctors are fighting,

897
00:45:54,162 --> 00:45:55,244
it's up to Tripp too.

898
00:45:55,594 --> 00:45:57,996
Yeah, yeah,

899
00:45:57,516 --> 00:45:58,956
What a strong little boy.

900
00:45:59,536 --> 00:46:01,399
yeah. And that's what we say now.

901
00:46:01,399 --> 00:46:04,241
like, we had nurses that told us they're
like,

902
00:46:04,241 --> 00:46:08,865
these fighters, these ones who come
through the hardest,

903
00:46:08,865 --> 00:46:13,169
like struggles, they're here because the
fight within them.

904
00:46:13,378 --> 00:46:14,378
Mm.

905
00:46:14,070 --> 00:46:16,672
It's not the fight that everyone is doing
around them.

906
00:46:16,672 --> 00:46:20,896
Yes, it contributes. But if that baby
doesn't have that fight,

907
00:46:21,271 --> 00:46:22,271
Yeah.

908
00:46:22,037 --> 00:46:23,508
they aren't going to keep.

909
00:46:23,734 --> 00:46:25,474
getting over all these hurdles.

910
00:46:25,474 --> 00:46:26,474
And

911
00:46:25,878 --> 00:46:26,878
Mm.

912
00:46:26,454 --> 00:46:29,494
so that's what we say now. He's so
headstrong and

913
00:46:28,994 --> 00:46:29,994
Yeah.

914
00:46:29,494 --> 00:46:30,494
he

915
00:46:29,734 --> 00:46:32,154
is so stubborn. And I'm like, that's what
kept you alive,

916
00:46:32,154 --> 00:46:34,194
dude. That is what kept you alive.

917
00:46:34,194 --> 00:46:37,534
So I'm like, praise God for this
stubbornness.

918
00:46:37,362 --> 00:46:39,589
Yeah. Yes.

919
00:46:37,534 --> 00:46:39,274
But my God,

920
00:46:40,134 --> 00:46:41,934
and a toddler. Now I'm like, okay,

921
00:46:41,934 --> 00:46:44,234
okay. Thank you for your

922
00:46:43,200 --> 00:46:44,200
Yeah.

923
00:46:44,234 --> 00:46:48,534
headstrong abilities and your stubbornness
because that's what kept you here.

924
00:46:49,708 --> 00:46:54,967
When you're at the bedside and he's
intubated and healing and you know there's

925
00:46:54,967 --> 00:46:58,633
a long road ahead of you, how did you
cope?

926
00:47:01,174 --> 00:47:02,174
Poorly.

927
00:47:05,202 --> 00:47:10,065
And I say that in all honesty because
again,

928
00:47:10,065 --> 00:47:15,207
pre-neck, we went home every night.

929
00:47:15,207 --> 00:47:17,969
We were sleeping in our own bed.

930
00:47:17,969 --> 00:47:21,822
I was showering at home, getting dressed
for the day,

931
00:47:21,822 --> 00:47:25,433
going to the NICU, feeling as refreshed as
I could.

932
00:47:25,433 --> 00:47:27,754
Post-neck.

933
00:47:29,926 --> 00:47:32,668
I had so much trauma of that phone call

934
00:47:32,983 --> 00:47:33,983
Hmm.

935
00:47:33,869 --> 00:47:39,254
that I was like, will never get a phone
call from a doctor that I have

936
00:47:39,254 --> 00:47:42,556
not met that my son might not live another
hour.

937
00:47:43,192 --> 00:47:44,192
Yeah.

938
00:47:43,978 --> 00:47:49,346
And I said, we are right now in survival
and

939
00:47:49,723 --> 00:47:55,027
we will one day have rest. And I know this
is not the great advice,

940
00:47:55,027 --> 00:47:56,027
but

941
00:47:55,179 --> 00:47:56,179
No, it is.

942
00:47:56,608 --> 00:47:58,710
this is what kept me going. And I said,

943
00:47:59,100 --> 00:48:05,253
This is temporary and we have to be here
for him because I had that guilt

944
00:48:05,314 --> 00:48:11,627
of we were not there in his immediate
moments of decline.

945
00:48:11,627 --> 00:48:16,720
so we are sanity.

946
00:48:16,720 --> 00:48:22,723
How we coped with this was we had a 24
hour system between my husband and I.

947
00:48:21,715 --> 00:48:23,729
Ugh, so hard.

948
00:48:23,750 --> 00:48:27,706
I know. And we slept in that recliner.

949
00:48:28,790 --> 00:48:33,410
And we would, one of us would stay for 24
hours at the hospital.

950
00:48:33,410 --> 00:48:36,590
We would come with snacks, foods,

951
00:48:36,590 --> 00:48:38,290
all that. We would

952
00:48:37,526 --> 00:48:38,526
Yeah.

953
00:48:38,290 --> 00:48:40,950
go to the Ronald McDonald House to grab a
lunch.

954
00:48:40,950 --> 00:48:43,350
That was when we learned about the Ronald
McDonald House.

955
00:48:43,350 --> 00:48:46,990
We would grab lunch. We would get a key
for,

956
00:48:46,990 --> 00:48:49,350
cause you had to check out a key each day.

957
00:48:49,350 --> 00:48:52,690
So we would get a room for that night to
be able to shower,

958
00:48:52,690 --> 00:48:55,170
brush our teeth, change clothes,

959
00:48:55,170 --> 00:48:58,010
and then do the.

960
00:48:58,849 --> 00:49:00,576
The whole, the switch lift, yeah.

961
00:48:58,998 --> 00:49:03,355
full into the next day. Yeah.

962
00:49:03,355 --> 00:49:06,190
And so we had that routine until he
discharged.

963
00:49:06,190 --> 00:49:10,438
So he got neck at 34 weeks. What was that?

964
00:49:12,534 --> 00:49:14,735
Let's see, and then he discharged at seven
months.

965
00:49:14,735 --> 00:49:20,296
And so for five months, we were doing 24
hour rotations

966
00:49:20,725 --> 00:49:22,657
Wow. Wow.

967
00:49:20,896 --> 00:49:21,896
to get us through.

968
00:49:23,417 --> 00:49:25,098
And with the weekends we would have,

969
00:49:25,098 --> 00:49:29,639
because our hospitals still had a lot of
COVID policies in place.

970
00:49:29,639 --> 00:49:35,781
And so we only had two, three other people
on our list that could have access

971
00:49:35,821 --> 00:49:40,802
to being with Tripp. And so we only had
those three other family members.

972
00:49:41,002 --> 00:49:45,754
that could come in and cycle. And they all
work all over and like

973
00:49:45,754 --> 00:49:47,605
in laws and parents still work.

974
00:49:47,605 --> 00:49:52,347
And so they couldn't do the weekdays and
but they could do the weekends.

975
00:49:52,347 --> 00:49:57,889
And so they would help rotate on the
weekends so we could do sports activities
that

976
00:49:57,889 --> 00:50:03,071
our other children had. And so that was
how we survived it.

977
00:50:03,071 --> 00:50:07,573
It was not I wouldn't say it was ideal,

978
00:50:07,573 --> 00:50:08,934
but it kept

979
00:50:09,510 --> 00:50:15,525
us from having those middle of the night
kind of panics that is everything

980
00:50:13,655 --> 00:50:15,216
Mm-hmm. Yeah.

981
00:50:15,525 --> 00:50:16,525
okay.

982
00:50:16,217 --> 00:50:19,019
Yeah. I have so many questions,

983
00:50:19,019 --> 00:50:21,471
Kim. I just want to keep hearing
everything,

984
00:50:19,444 --> 00:50:20,444
No.

985
00:50:21,471 --> 00:50:23,122
but I know I can't keep you forever.

986
00:50:23,122 --> 00:50:24,423
~

987
00:50:29,387 --> 00:50:32,693
When you were, and I know this is such a
fast,

988
00:50:32,693 --> 00:50:36,880
fast forward, but when you guys were
discharged from the NICU,

989
00:50:36,880 --> 00:50:40,106
what was that day like?

990
00:50:40,106 --> 00:50:42,631
And it's okay to not sugar coat it.

991
00:50:43,466 --> 00:50:47,748
Yeah, mean, discharge, it was a long time
coming for us.

992
00:50:47,748 --> 00:50:49,809
I mean, after being there for seven
months,

993
00:50:49,809 --> 00:50:52,640
we had like, we're like, okay,

994
00:50:52,640 --> 00:50:54,771
we got this. Like, we're

995
00:50:53,635 --> 00:50:54,635
you

996
00:50:54,771 --> 00:50:58,192
ready. Like, let's get going. Like,

997
00:50:56,682 --> 00:50:58,080
Okay, we were there.

998
00:50:58,532 --> 00:51:00,493
yeah, I we were because I mean,

999
00:51:00,493 --> 00:51:02,274
we even got our hospital to like,

1000
00:51:02,274 --> 00:51:06,635
waive their need to do the the two day
rooming in because we're like,

1001
00:51:06,635 --> 00:51:08,186
we're here.

1002
00:51:07,221 --> 00:51:08,621
You're like, I've been rooming in.

1003
00:51:09,237 --> 00:51:10,977
Every day. And so they're like,

1004
00:51:10,977 --> 00:51:12,948
we know you are like, we know you're
there.

1005
00:51:13,526 --> 00:51:17,006
We had already done like line trading.

1006
00:51:17,006 --> 00:51:21,565
had like all this stuff. Like it wasn't
scary.

1007
00:51:21,565 --> 00:51:23,766
It was like, I will, I was like,

1008
00:51:23,766 --> 00:51:26,646
I will walk this IV poll out of here with
him.

1009
00:51:26,646 --> 00:51:28,986
Like we're done. We're done. If he needs
to come back,

1010
00:51:26,690 --> 00:51:30,018
Yeah. Yeah. Yeah.

1011
00:51:28,986 --> 00:51:29,986
I'll come back.

1012
00:51:30,306 --> 00:51:32,146
I'm not afraid to speak up anymore.

1013
00:51:32,146 --> 00:51:36,326
was like, we had like, we had gotten our
rhythm to where it was like,

1014
00:51:36,326 --> 00:51:39,566
I am not afraid of all of his medical
devices.

1015
00:51:39,566 --> 00:51:43,126
I like, let's go.

1016
00:51:42,465 --> 00:51:43,465
You can handle it.

1017
00:51:43,345 --> 00:51:44,345
Yeah.

1018
00:51:43,835 --> 00:51:46,599
I was like, let's go. I feel equipped.

1019
00:51:46,599 --> 00:51:49,453
I feel prepared mentally. I'm there.

1020
00:51:49,453 --> 00:51:53,790
Like we had just, it was like we had hit
like the burnout stage.

1021
00:51:53,901 --> 00:51:54,901
Thanks.

1022
00:51:54,432 --> 00:51:56,915
We're like, we done did this enough.

1023
00:51:56,915 --> 00:51:58,458
We are going round and round the circle.

1024
00:51:58,819 --> 00:52:01,012
So you, yeah, you didn't have the,

1025
00:52:01,012 --> 00:52:02,805
how will we do this at home? You're like,

1026
00:52:02,805 --> 00:52:06,912
I know I can do this. And we've got

1027
00:52:04,468 --> 00:52:05,851
Yeah, I'll figure it out.

1028
00:52:07,112 --> 00:52:08,865
big siblings at home waiting.

1029
00:52:09,558 --> 00:52:13,218
Yeah, yeah, that we're ready for everyone
to come home.

1030
00:52:13,218 --> 00:52:18,598
So we had a beautiful going away send off
by our primary nurses had

1031
00:52:18,598 --> 00:52:22,158
put together a beautiful celebration for a
trip to go home.

1032
00:52:22,158 --> 00:52:26,798
And the nurses and staff just came to see
us and embraced us.

1033
00:52:26,798 --> 00:52:30,598
so we felt very well, like by the end of
everything,

1034
00:52:30,598 --> 00:52:36,258
we felt so loved and so connected with our
team and

1035
00:52:36,258 --> 00:52:38,178
the staff that supported us.

1036
00:52:38,816 --> 00:52:45,238
Childlife and PT and OT. mean dear dear
dear people to us that I still send like

1037
00:52:45,238 --> 00:52:50,931
pictures of trip and updates and And so it
was just like okay.

1038
00:52:50,931 --> 00:52:53,392
We ready get us out of here

1039
00:52:52,087 --> 00:52:53,558
Yeah, time to go.

1040
00:52:53,726 --> 00:52:59,274
No, yeah, so it was a relief more than
anything instead of that dread

1041
00:53:00,163 --> 00:53:04,363
Do you still hold on to that post-neck,

1042
00:53:04,363 --> 00:53:08,023
advocating mama for a trip with what he
needs?

1043
00:53:08,023 --> 00:53:10,303
Yeah.

1044
00:53:09,160 --> 00:53:10,490
Absolutely. Yeah.

1045
00:53:10,490 --> 00:53:15,313
I mean, I would say once I got out of
being in that,

1046
00:53:15,313 --> 00:53:20,625
are we fighting, are we fighting alone for
Tripp or is he fighting alongside with

1047
00:53:20,625 --> 00:53:26,647
us? We, we started finding our own voice
and we started saying like,

1048
00:53:26,647 --> 00:53:28,608
does he need this? Does he need that?

1049
00:53:28,608 --> 00:53:32,460
Like really wanting to be involved because
we've had felt

1050
00:53:32,640 --> 00:53:38,132
so uninvolved pre neck and to where it was
like,

1051
00:53:38,292 --> 00:53:42,896
No, you're going to talk to us like we're
are his team just as much

1052
00:53:42,896 --> 00:53:44,127
as you're his team. Like

1053
00:53:44,152 --> 00:53:45,152
Hmm.

1054
00:53:44,427 --> 00:53:46,048
we, like my husband always said,

1055
00:53:46,048 --> 00:53:49,531
we have to take him home and care for him.

1056
00:53:49,531 --> 00:53:54,516
Like you might make decisions today that
may impact him today,

1057
00:53:54,516 --> 00:53:59,220
but those decisions also can impact his
next month,

1058
00:53:59,220 --> 00:54:01,501
next year, like the rest of his life.

1059
00:54:01,501 --> 00:54:06,806
And so he, my husband was very good about
always like advocating for things.

1060
00:54:07,094 --> 00:54:10,934
for Tripp's forever versus Tripp's NICU
stay.

1061
00:54:11,245 --> 00:54:12,245
Mm-hmm.

1062
00:54:12,174 --> 00:54:18,134
And so he helped me kind of hone in on
that voice of asking questions.

1063
00:54:18,134 --> 00:54:19,154
Cause I remember my husband be like,

1064
00:54:19,154 --> 00:54:21,694
well, did you ask this? Why are we
stopping this?

1065
00:54:21,694 --> 00:54:23,754
Or why did you increase or not increase

1066
00:54:23,299 --> 00:54:24,299
Yeah.

1067
00:54:23,754 --> 00:54:25,194
feeds? And I'm like, I don't know.

1068
00:54:25,194 --> 00:54:26,334
That's just what they told me that

1069
00:54:26,315 --> 00:54:27,550
Yeah. Yeah.

1070
00:54:26,334 --> 00:54:27,674
they're doing. And he's

1071
00:54:27,674 --> 00:54:31,194
like, no, ask and advocate and push.

1072
00:54:31,194 --> 00:54:33,734
And I'm like, okay, okay.

1073
00:54:32,491 --> 00:54:33,491
It takes time.

1074
00:54:33,914 --> 00:54:34,914
Yeah.

1075
00:54:35,212 --> 00:54:40,194
Kim, for these families who we're trying
to reach with this conversation right now,

1076
00:54:40,194 --> 00:54:43,415
who want to know what

1077
00:54:43,415 --> 00:54:48,917
a post-neck 12-centimeter colon life is
like for a toddler,

1078
00:54:48,917 --> 00:54:50,558
what is your life like right now?

1079
00:54:50,558 --> 00:54:53,059
And I know every day is different,

1080
00:54:52,022 --> 00:54:54,063
So right now, yeah.

1081
00:54:53,059 --> 00:54:54,059
but...

1082
00:54:55,243 --> 00:55:00,424
So I think the unglamorous part of short
bowel syndrome

1083
00:55:00,784 --> 00:55:05,926
is your life revolves around a lot of
throw up and a lot of stool discussions.

1084
00:55:05,926 --> 00:55:11,327
It's a lot about hydration. It's a lot
about the in versus outs.

1085
00:55:11,327 --> 00:55:16,289
~ And so that's, would say the busiest
part about our life

1086
00:55:16,849 --> 00:55:21,510
is managing the ins and the outs and what
shouldn't be coming in and out.

1087
00:55:21,827 --> 00:55:22,827
Mm-hmm.

1088
00:55:23,079 --> 00:55:27,563
Like, yes, is a central line an extra
level of care?

1089
00:55:27,563 --> 00:55:29,634
Is a G-tube an extra level of care?

1090
00:55:29,634 --> 00:55:35,249
Yes. But as you work those muscles and
using those skills,

1091
00:55:35,249 --> 00:55:37,471
it's like riding a bike. And

1092
00:55:36,941 --> 00:55:37,941
Yeah.

1093
00:55:37,631 --> 00:55:42,515
as overwhelming as it might see when you
first get those lines,

1094
00:55:42,515 --> 00:55:47,320
it does become routine and it does become
less scary.

1095
00:55:47,320 --> 00:55:50,102
what was that?

1096
00:55:50,817 --> 00:55:53,236
~ I don't know. think it's good.

1097
00:55:52,758 --> 00:55:55,165
Something like beeped. Okay. Yeah,

1098
00:55:53,236 --> 00:55:56,327
Is it beeping? shoot.

1099
00:55:55,165 --> 00:55:56,165
like beeped.

1100
00:55:56,629 --> 00:55:57,629
No, we're good.

1101
00:55:58,142 --> 00:56:03,587
Okay. ~ but things do become routine and
it's our routine

1102
00:56:03,747 --> 00:56:06,755
and it's not like people see trip and
they're like,

1103
00:56:06,755 --> 00:56:13,198
I would have never known from the outside
everything trip has been through that

1104
00:56:13,198 --> 00:56:15,209
he goes through on a daily basis.

1105
00:56:15,209 --> 00:56:16,868
They're like, I would have never known.

1106
00:56:16,868 --> 00:56:20,201
He just looks like a happy adventurous
toddler.

1107
00:56:20,201 --> 00:56:23,604
And I'm like, well, you don't see all the
work

1108
00:56:23,971 --> 00:56:24,971
Yeah.

1109
00:56:24,505 --> 00:56:26,006
that we're doing.

1110
00:56:26,218 --> 00:56:29,139
get him there and to keep him there.

1111
00:56:29,139 --> 00:56:33,340
Like I had my mom over one day when we
were fighting SIBO,

1112
00:56:33,340 --> 00:56:35,131
which is like small

1113
00:56:34,051 --> 00:56:35,051
Mm.

1114
00:56:35,131 --> 00:56:36,721
bacterial overgrowth. And that's like our,

1115
00:56:36,721 --> 00:56:38,542
I would say that's our biggest battle,

1116
00:56:38,542 --> 00:56:39,542
like on a regular

1117
00:56:38,864 --> 00:56:39,864
Yeah.

1118
00:56:39,512 --> 00:56:43,433
basis. And he just was throwing up and
throwing up.

1119
00:56:43,433 --> 00:56:46,164
And my mom is just crying. She's like,

1120
00:56:46,164 --> 00:56:50,105
my gosh, he's crying. Like he's throwing
up and I'm like,

1121
00:56:50,105 --> 00:56:53,716
this is our normal. Like.

1122
00:56:53,356 --> 00:56:54,356
Yeah.

1123
00:56:54,132 --> 00:56:56,623
He has thrown up in public and I know
people are like,

1124
00:56:56,623 --> 00:57:00,064
why do you have a sick kid in public?

1125
00:57:00,064 --> 00:57:04,245
And I'm like, he's not sick. You're not
going to get this.

1126
00:57:01,697 --> 00:57:05,206
You don't know our story. Yeah.

1127
00:57:05,225 --> 00:57:08,386
And so I'm like having emesis bags with us
all the time.

1128
00:57:08,386 --> 00:57:10,526
Like that's our new normal now.

1129
00:57:10,526 --> 00:57:14,788
And it's just, we just roll with it.

1130
00:57:14,788 --> 00:57:15,788
And I,

1131
00:57:15,149 --> 00:57:16,149
just roll with it.

1132
00:57:16,048 --> 00:57:18,189
yeah, I'm like, I mean, he's the fourth.

1133
00:57:18,189 --> 00:57:19,969
He also doesn't have much of a choice.

1134
00:57:19,969 --> 00:57:23,310
Like we go play some video.

1135
00:57:21,518 --> 00:57:23,411
So your original plan of

1136
00:57:23,411 --> 00:57:29,209
saying our fourth will just come along is
actually happening ~ with

1137
00:57:29,209 --> 00:57:31,503
a big old detour he wanted to give you.

1138
00:57:31,503 --> 00:57:34,567
~ Kim,

1139
00:57:34,567 --> 00:57:37,161
what is your favorite part of being
Tripp's mom?

1140
00:57:39,114 --> 00:57:44,320
My favorite part about being Tripp's mom
is really getting to walk beside

1141
00:57:44,320 --> 00:57:45,320
his testimony.

1142
00:57:49,726 --> 00:57:56,678
The joy that I know is to come of his
story and what he's are the lives he's
already

1143
00:57:56,678 --> 00:58:02,290
touched the The families that have come to
us saying thank you

1144
00:58:02,290 --> 00:58:08,381
for sharing trip that we now see that life
isn't going to be

1145
00:58:08,381 --> 00:58:14,709
as hard as we thought it was going to be
and it's just knowing

1146
00:58:14,709 --> 00:58:17,334
That he's gonna do great things

1147
00:58:18,006 --> 00:58:23,646
Like I just know he is. I'm just honored
to be his mom and that

1148
00:58:23,646 --> 00:58:26,966
I get to just care for him.

1149
00:58:26,966 --> 00:58:30,166
I mean, he's a special kid.

1150
00:58:30,166 --> 00:58:31,966
He is a special kid.

1151
00:58:33,207 --> 00:58:37,809
Well, thank you so much for sharing his
story and your story.

1152
00:58:37,809 --> 00:58:40,480
And I think you're exactly right.

1153
00:58:40,480 --> 00:58:43,972
You're all, including you, are doing
amazing things.

1154
00:58:43,972 --> 00:58:47,533
And you are such an amazing mom and
amazing

1155
00:58:44,618 --> 00:58:47,099
Thank you. Thank you.

1156
00:58:47,533 --> 00:58:52,135
dad to be there. And I know you didn't
have a choice.

1157
00:58:52,135 --> 00:58:53,676
You

1158
00:58:52,968 --> 00:58:53,968
Yeah.

1159
00:58:53,676 --> 00:58:56,997
know, I know you had to step up to the
plate and that takes

1160
00:58:56,650 --> 00:58:57,650
Right.

1161
00:58:57,098 --> 00:58:59,358
a whole lot of strength that you didn't
ask to have,

1162
00:58:59,358 --> 00:59:00,449
but you ended up getting.

1163
00:59:00,342 --> 00:59:01,342
Right.

1164
00:59:01,207 --> 00:59:02,633
Yeah. Yep. Yep.

1165
00:59:04,653 --> 00:59:10,141
Kim, are there any resources or things
that you've found along the way,

1166
00:59:10,141 --> 00:59:15,279
whether it's for Shortcut Now or NEC or
communities that have really changed

1167
00:59:15,279 --> 00:59:17,653
the game for you that you want other
families to know about?

1168
00:59:18,678 --> 00:59:22,758
Yeah, I always direct people when people
find us online,

1169
00:59:22,758 --> 00:59:28,738
I always direct them to the short gut
family support group that

1170
00:59:28,738 --> 00:59:34,118
is full of I think 12 or 13 years of
information.

1171
00:59:34,118 --> 00:59:39,458
And it is a wealth of information of a
Facebook group of if you have any
questions,

1172
00:59:39,458 --> 00:59:44,778
if you have any wanting to see what a 27
week or a 30 week

1173
00:59:44,778 --> 00:59:46,778
or what any other

1174
00:59:47,102 --> 00:59:49,403
You don't just get short bowel from neck.

1175
00:59:49,403 --> 00:59:52,204
You can get short bowel through so many
other avenues.

1176
00:59:52,204 --> 00:59:57,006
And so it's all these other ways that
funnel into short bowel.

1177
00:59:57,006 --> 01:00:02,508
And it is families there to support other
new families that just

1178
01:00:02,508 --> 01:00:05,190
are coming in fresh and saying,

1179
01:00:05,190 --> 01:00:08,741
what are we going to do? How do you live
this life?

1180
01:00:08,741 --> 01:00:12,373
mean, it's full of resources of how to set
up your medical cart.

1181
01:00:12,373 --> 01:00:14,163
How does like what supplies you need,

1182
01:00:14,163 --> 01:00:15,744
what extra supplies like

1183
01:00:16,096 --> 01:00:21,477
questions to ask your doctor. Like it
really was our lifeline early on.

1184
01:00:21,889 --> 01:00:24,730
Wow, that's amazing. Yeah. And

1185
01:00:24,392 --> 01:00:25,392
out.

1186
01:00:24,730 --> 01:00:28,102
you're right. There's so many different
ways to get short belt.

1187
01:00:28,102 --> 01:00:30,183
And I'm sure you all have different
experiences,

1188
01:00:30,183 --> 01:00:33,515
which actually leads to a more wealth of
information and resources.

1189
01:00:33,515 --> 01:00:37,567
And like this doctor knows this and that
doctor knows this and sharing

1190
01:00:37,226 --> 01:00:38,226
Yes.

1191
01:00:37,567 --> 01:00:38,567
it all together.

1192
01:00:38,746 --> 01:00:39,746
Yes. Yep.

1193
01:00:41,025 --> 01:00:45,092
I've always felt like the best support for
parents are other parents

1194
01:00:45,092 --> 01:00:49,409
who have walked through it. And so thank
you for adding to this collection

1195
01:00:49,650 --> 01:00:52,865
of being somebody who helps others through
what you've been through.

1196
01:00:53,620 --> 01:00:56,891
Yes, thank you. Yeah, I mean, that's why I
started sharing online.

1197
01:00:56,891 --> 01:01:00,633
Even though I had the wealth of
information from that Facebook group,

1198
01:01:00,633 --> 01:01:04,455
I didn't, I never got to see someone's day
to day.

1199
01:01:04,455 --> 01:01:09,046
I didn't get to see the hookups and the
disconnects and how do you get

1200
01:01:09,046 --> 01:01:13,138
a toddler to maneuver with a IV pole in a
bag?

1201
01:01:13,442 --> 01:01:14,442
Yeah.

1202
01:01:13,819 --> 01:01:18,891
so I was like, I've got to start showing
what this is because I

1203
01:01:18,891 --> 01:01:20,350
was searching for it. And I'm

1204
01:01:20,002 --> 01:01:21,002
Yeah.

1205
01:01:20,350 --> 01:01:22,002
like, I couldn't find.

1206
01:01:22,760 --> 01:01:26,454
a family that looked like ours doing what
we were doing.

1207
01:01:26,454 --> 01:01:29,268
And so since we've been sharing,

1208
01:01:29,268 --> 01:01:33,372
have found so many other families have
found us and they've started sharing.

1209
01:01:33,372 --> 01:01:36,606
And so I'm like, I see all these short gut
families and I'm like,

1210
01:01:36,606 --> 01:01:39,269
yes, yes, yes. I'm like, I love it.

1211
01:01:37,961 --> 01:01:40,045
I, it's pretty

1212
01:01:40,045 --> 01:01:44,742
amazing. Like when you start sharing and
it takes a lot of guts and is vulnerable,

1213
01:01:44,742 --> 01:01:47,447
but you do end up finding your people.

1214
01:01:48,522 --> 01:01:50,123
I remember the first time I shared,

1215
01:01:50,123 --> 01:01:54,765
I was like, I am going to get a bunch of
comments of,

1216
01:01:54,765 --> 01:01:57,866
I'm not wearing gloves. She doesn't have a
mask on.

1217
01:01:57,866 --> 01:02:01,587
I was so afraid that that was gonna be the
response.

1218
01:02:01,587 --> 01:02:05,369
And I have never been met with those
responses.

1219
01:02:05,369 --> 01:02:06,369
It has been

1220
01:02:05,667 --> 01:02:06,667
Yeah.

1221
01:02:06,159 --> 01:02:10,571
only love and appreciation and connection
and community.

1222
01:02:10,571 --> 01:02:13,282
And so I'm like, what your head tells you,

1223
01:02:13,282 --> 01:02:16,854
you're gonna get back is usually not what
is on the other side.

1224
01:02:17,569 --> 01:02:20,440
You know, somebody, I was once listening
to something and they said,

1225
01:02:20,440 --> 01:02:25,403
post with the expectation that everyone is
going to be so glad you did.

1226
01:02:25,403 --> 01:02:30,426
And that kind of changes what you'll allow
yourself to do and share

1227
01:02:30,466 --> 01:02:32,147
and share what really matters.

1228
01:02:31,158 --> 01:02:33,229
Right. Right.

1229
01:02:33,608 --> 01:02:35,594
Because most of the time you are met with
that.

1230
01:02:35,594 --> 01:02:38,830
And of course there's the trolls and the
horrible people that

1231
01:02:37,513 --> 01:02:38,513
Right.

1232
01:02:38,830 --> 01:02:40,231
exist, but. ~

1233
01:02:41,835 --> 01:02:43,438
I'm so grateful for our time today,

1234
01:02:43,438 --> 01:02:46,073
Kim, and thank you for letting me in on
more of your story

1235
01:02:43,934 --> 01:02:46,014
Thank you.

1236
01:02:46,073 --> 01:02:48,438
because we're online friends. We're going
to keep being online friends,

1237
01:02:48,438 --> 01:02:49,570
but now I know more about

1238
01:02:48,862 --> 01:02:49,862
Yes.

1239
01:02:49,570 --> 01:02:50,570
you.

1240
01:02:50,363 --> 01:02:54,646
Yes, yes. And I will have to let you know
when we're driving through town

1241
01:02:54,666 --> 01:02:58,779
so we can catch up. Yeah. Yeah,

1242
01:02:54,829 --> 01:02:56,384
Come on, when you're going through the
drip,

1243
01:02:56,384 --> 01:02:59,774
let's get a sip. I just made that up.

1244
01:02:58,779 --> 01:03:02,576
because we do. I'm like,

1245
01:03:02,576 --> 01:03:04,232
our spot is usually Schalotzky's.

1246
01:03:04,232 --> 01:03:06,834
We always make a stop at Schalotzky's.

1247
01:03:06,243 --> 01:03:09,303
It's right next to TCBY, so that's
perfect.

1248
01:03:06,834 --> 01:03:11,297
Yeah.

1249
01:03:09,303 --> 01:03:12,743
Thank you so much, Kim. I appreciate you.

1250
01:03:13,058 --> 01:03:14,299
Yes. Thank you, Katie.

1251
01:03:14,939 --> 01:03:17,781
Before you go, if this story taught you
something,

1252
01:03:17,781 --> 01:03:21,973
made you feel less alone, or helped you
better understand what families experience

1253
01:03:21,973 --> 01:03:25,695
in pediatric healthcare, would you help us
by passing it forward?

1254
01:03:25,695 --> 01:03:29,658
Podcasts like this grow because people
share them.

1255
01:03:29,658 --> 01:03:32,800
Send an episode to a friend, a neighbor,

1256
01:03:32,800 --> 01:03:36,273
another parent, or share it with a
Facebook group or community where

1257
01:03:36,273 --> 01:03:38,144
you think someone might need to hear it.

1258
01:03:38,275 --> 01:03:41,267
And if you haven't already, follow the
show and leave us a review.

1259
01:03:41,606 --> 01:03:44,608
it helps more families find these stories
and learn from the parents

1260
01:03:44,608 --> 01:03:46,009
who have walked this path before.

1261
01:03:46,131 --> 01:03:48,796
Thank you so much for listening to Inside
the Children's Hospital.

1262
01:03:48,796 --> 01:03:49,948
We'll see you next time.