{"id":8310,"date":"2012-08-29T12:08:32","date_gmt":"2012-08-29T17:08:32","guid":{"rendered":"http:\/\/www.babypennington.com\/?p=8310"},"modified":"2012-09-03T19:56:13","modified_gmt":"2012-09-04T00:56:13","slug":"last-step","status":"publish","type":"post","link":"https:\/\/www.babypennington.com\/?p=8310","title":{"rendered":"Last Step"},"content":{"rendered":"

We are in our favorite city (outside of Hartsville, of course) and we’ve settled into our typical MUSC routine quite nicely already.\u00a0 It’s amazing how it all comes back to you.\u00a0 We knew we’d only be admitted for a short while, but I guess as creatures of habit, we’ve hardly missed a beat.\u00a0 We wake, order MC’s breakfast, shower, check out morning plan (echo, chest x-ray, etc.), visit Atruium, take meds, get on computer and update website, order lunch, etc.<\/p>\n

We’ve had visits from some of our long-time nurse friends, Laura, Joy, and Brenna.\u00a0 Joy was Mary Clare’s very first nurse in PCICU after birth. We laughed together last night remembering how she had to use gel to stick a tiny pink bow to Mary Clare’s head.\u00a0 Mel has also\u00a0<\/del>had fun <\/span>joking around with (tormenting) a few of the docs that have followed MC.\u00a0 Dr. Hlavacek, who did my fetal ultrasound diagnosing her HLHS, Dr. Hamilton Baker, who has been her cardiologist and yesterday performed her cath, Dr. Andy Atz, who has followed and researched MC’s case since birth and of course, Dr. Geoff Forbus, MC primary cardiologist.\u00a0 They’ve all become our friends.<\/p>\n

MC had a scheduled heart cath yesterday.\u00a0 She also had her fenestration closure<\/a>.\u00a0 And once again, in my non-medical terminology, I’ll try to explain it.\u00a0 (I actually listened as Mel explained it yesterday to a friend and he did quite well.\u00a0 I should have him do this.)\u00a0 So, a fenestration is a hole intentionally left in the heart after the Fontan procedure.\u00a0 The new circulation after her Fontan created added pressure, in which her little heart and body weren’t quite ready for.\u00a0 Dr. Bradley left the fenestration (hole) to release some of that pressure with plans to close it when her body was ready.\u00a0 Generally, this procedure is done about a year after surgery. We have been a tad busy this year, so it’s been 18 months for MC.<\/p>\n

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MC placed her EEG stickers on Daddy’s face.<\/p>\n

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MC laughing at her “Fuzzy Little Caterpillar” after taking her “Happy Juice” (Versed) before they wheeled her back.<\/p>\n

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This is where it hits me.\u00a0 Every time.<\/p>\n

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The amazing thing is how they actually “plug the hole.”\u00a0 We were shown a sample device exactly like the one that was used in MC’s heart. (Mel is stretching it apart in the photo above.\u00a0 It can actually stretch out into a tiny tube.)\u00a0 It’s made of mesh and metal material.\u00a0 It’s threaded through the cath tube and popped into place. Once it’s where it needs to be, they release it and it flattens.\u00a0 Tissue will eventually grow over the mesh material, making a tight seal.\u00a0 That’s just crazy to me.\u00a0 Right now some blood flows through the mesh material, creating a tad of mixture of O2 rich and O2 poor blood.\u00a0 Still, her Oxygen saturation levels were in the mid 90’s.\u00a0 She’s never had levels so high!\u00a0 Once tissue grows over the patch and completely seals off the fenestration, she’ll have even higher levels!!\u00a0 I hope Ms. Chure is ready for a higher energy Mary Clare.<\/p>\n

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How many nurses does it take to help Daddy?\u00a0 Daddy nearly fainted as the nurses tried (using an infant needle, I think) to draw a tiny vile of blood for genetic research.\u00a0 Mel and I have been participating in research studies since Mary Clare’s birth.\u00a0 We realize that the information gathered may not help Mary Clare now, but we feel sure that one day CHDs will be a thing of the past and findings may help her future.\u00a0 My grandfather had a blue baby over 50 years ago.\u00a0 He selflessly gave his son’s body to be used for research. The knowledge and information gained from Mary Clare’s great uncle helped discover ways for her to live and thrive.\u00a0 I know it makes a difference.<\/p>\n

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(A note to MC from McCanless)<\/p>\n

This morning, we were invited to Camp Rise Above in the Atrium.\u00a0 MC walked into the familiar playroom a bit timid.\u00a0 Once she met the smiling faces of the staff and saw the activities waiting for her, she took off with her telemetry monitor dragging behind her detaching a few leads as she ran.<\/p>\n

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As we sat and played with the doll house, I noticed several other children.\u00a0 One little girl clearly going through chemo, another tethered to an IV pole.\u00a0 And while Mary Clare had a long day yesterday, she was feeling fine today with only leads and IV to show for her time here.\u00a0 Memories and emotions came flooding.\u00a0 Images of my three year old\u00a0 barely able to hold her head up, sitting in her wagon trying to paint in this very room filled my mind.\u00a0 I thought of the very night we were air lifted after seizures, we came to the Atrium to wait on Daddy.\u00a0 As an infant, I walked her into this room to see the bright sunshine and listen to the older children’s laughs.\u00a0 Amazingly, today Mary Clare was the healthier one. The Atrium has watched her grow and heal.\u00a0 It has made this life of hers normal.\u00a0 We had to drag her away kicking and screaming to get her echo, promising to return later.\u00a0 Not too long ago, I dreamed of her having the energy to be able to do that.<\/p>\n

So, this one last step of her Fontan is complete.\u00a0 It’s a rather odd, but amazing feeling.\u00a0 What a miracle my sweet girl is.<\/p>\n

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We are in our favorite city (outside of Hartsville, of course) and we’ve settled into our typical MUSC routine quite nicely already.\u00a0 It’s amazing how it all comes back to you.\u00a0 We knew we’d only be admitted for a short while, but I guess as creatures of habit, we’ve hardly missed a beat.\u00a0 We wake, […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-8310","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/8310","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=8310"}],"version-history":[{"count":10,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/8310\/revisions"}],"predecessor-version":[{"id":8329,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/8310\/revisions\/8329"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=8310"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=8310"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=8310"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}