tag:blogger.com,1999:blog-21200811405610562282024-02-06T22:32:06.287-07:00Faith's PlaceRaeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.comBlogger182125tag:blogger.com,1999:blog-2120081140561056228.post-60785587561315237772014-04-01T22:39:00.001-06:002023-11-25T17:06:40.483-07:00A new twist...Back in February, Faith had an appointment with an orthopedist. She's been walking on her toes for awhile, and when she had her 5-year old check-up her doctor noticed that it was mostly just in her left foot. He said that was different, actually that he had never seen a kid who only toe-walked on one side before, so he referred her to the orthopedist.<br />
So, I took her for the appointment, fully expecting that he would recommend physical therapy or something to stretch things out. The orthopedist checked her out, tested her reflexes, and had her walk for him. He said that the plan to fix it would be a series if casts, each stretching a little more than the last, a special splint to wear at night, and if those didn't work, a surgery to lengthen things so that her foot can flatten. And then, he shocked me.<br />
He said that she walks on her toes because she has cerebral palsy. He said that the left side of her body is hyper-reflexive, and that she had something called clonus when he tried to stretch her foot. He referred us to a neurologist at Children's to confirm the diagnosis.<br />
We honestly NEVER expected to hear that Faith could have cerebral palsy. She seems totally normal, with only a few slight exceptions. Her balance has never been good. She is fairly timid because of her balance, not really one for adventure. When she took a gymnastics class back in the fall, I noticed that she was far less coordinated than the other kids, most of whom were younger than she was. We've always blamed her bad balance on her surgeries, but have noticed recently that other kids with similar histories don't have the same problem. Her fine motor skills are not that good; she has had a really hard time learning to write. And then there's the toe-walking thing...<br />
But she is incredibly smart. She's been reading since last fall, she does math without even thinking about it/realizing she's doing it. She will be going to Kindergarten next year, based solely on her birthday, although if she was tested and put into a class based on how she did, I am sure she would be in first grade. I have purposely stopped teaching her things, because otherwise there will literally be nothing left for her to learn in school!<br />
So, we saw the orthotics guy shortly after her appointment, and he got her fitted for a splint. God was working behind the scenes, and it "just so happened" that there was a splint in her size on the counter in the room, and it was purple with butterflies on it! She has been wearing it every night for about a month now.<br />
As usual when it comes to seeing a specialist at Children's, we have had to wait six weeks for her appointment with the neurologist. It is finally coming up, next Tuesday. After that appointment, the casting would start at the orthopedist. I've been doing my research, as usual, and we've been talking about what I've learned, and we actually aren't settled on the casting idea, or the surgery. The Orthotist suggested that a brace for everyday wear could actually be an option, and brought up the possibility that if she does have CP, then her natural tendency is for those muscles to be tight, and even if they surgically lengthen them, they could re-contract and the problem could come back. Needless to say, I have a lot of questions for the neurologist.<br />
Faith and I went to a healing prayer/night of worship service at church Sunday night. She stood in front of the whole church and prayed into a microphone, "Dear God, please help my leg feel better, amen!" Then she prayed for a lady with cancer, and then she got prayed for. We are boldly approaching the Throne, asking God for another miracle for Faith- that He would stretch her muscles and relieve the tightness, that her reflexes would all be normal, and that the neurologist would tell us on Tuesday that there is NOTHING wrong with her. Monday morning after she was prayed for, she complained that her leg was hurting... Then I tried stretching her foot, and it went further than it ever has! After that I had her walk, and she was walking with her feet flat, not in her toes! She got SUPER excited and yelled, "God is healing my leg!" So, we will see. She is claiming her healing in Jesus' name, and she definitely has that perfect child's faith, believing without doubt that God is going to heal her without casts or surgery.<br />
I hope to be able to update after her appointment with the news that she does NOT have cerebral palsy, but even if she does, we still see it as a miracle that she has such a mild case that no one had any idea until she was almost 5 1/2!Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-26698848601567220042013-11-13T11:23:00.002-07:002013-11-13T11:24:17.561-07:005 years later...<div class="separator" style="clear: both; text-align: center;">
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5 years ago today, our lives changed in ways we could never have imagined. Our little girl was born with a big ball of purple intestine hanging out of her. We were expecting it, but could never have prepared ourselves for what she actually looked like. (We looked at pictures before she was born, but never saw one where the intestines were as swollen, dark, and matted as hers were.) She had a complication at birth when her umbilical cord ruptured and they had a hard time stopping the bleeding, so I was only able to see her and kiss her head before they whisked her off to the NICU.<br />
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6 hours later, she was in the operating room for her first surgery, where they put her intestines into a silo and put in her central line, through which they "fed" her the IV nutrition that kept her alive, but ultimately caused her liver failure. When I finally got to see and actually touch her the next morning, this is what she looked like, with tubes and wires everywhere.</div>
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Six days after she was born, she went to the operating room again, and they were able to close up her belly. She did well after surgery, and we were able to hold her for the first time when she was 8 days old.</div>
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The days that followed were marked by many unknowns. She had a mystery condition, that caused her to swell uncontrollably. No one knew what was going on. Thankfully, we had no idea at the time just how serious her condition was. This was the first point at which she very well could have died.</div>
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The day she turned 2 weeks old was Thanksgiving, and God answered our prayers by giving the doctors the answer to what was causing Faith's swelling. They put in chest tubes, and the excess fluid was able to drain. </div>
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She stayed in the NICU for another 4 months, facing several more surgeries and many challenges, especially with eating. Meanwhile, the life-saving IV nutrition was causing more and more damage to her liver, and she was severely jaundiced. At this point, without treatment, she had only a 22% chance to survive. Her doctors in Denver diagnosed her with intestinal failure, and told us that she would need a small bowel transplant- a risky surgery with only a 50% survival rate post-transplant. </div>
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Somehow, God led me to Google just the right combination of words one day, and I discovered that we had another option- going to Boston Children's Hospital and getting her into their Omegaven study. After a whirlwind of figuring out specifics, getting tickets for our flight, and more, Faith and I found ourselves in Boston. After only a week on Omegaven, Faith's feet started turning pink!</div>
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After a month in Boston, Faith's liver was completely normal, and we were given permission to bring her home!</div>
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Looking back at everything we went through, it still amazes me sometimes that we have been so amazingly blessed! Just thinking about where we started with Faith, the times we could have lost her, and looking at her now, makes me tear up. We thank God every day that He let us keep her, that he was faithful and brought us through everything. He used those experiences to strengthen our faith, to increase our trust and dependence on Him, and to show us that He really does work all things for our good!</div>
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<br />Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-25295097789844784642013-06-14T18:43:00.001-06:002013-06-14T18:43:24.999-06:00Irony...Well, the answer to Faith's mystery post-op illness is simple- she has a UTI. Seriously. The surgery she had on Monday was to help keep her from having them, but apparently it gave her one as a parting gift. <div>It explains the throwing up, the kidney/back pain, the decreased appetite, the decreased urine output... Basically everything that's been going on since Wednesday night. The thing that bothers me is that I spoke to the urologist's office multiple times, and never once did they mention that it could be a UTI! <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZW4hQPp-2SFo7gruAgI9tMxDRHY37ROSxsxCuz1h-XJz2G65q3zwXJEO5Y3YR2TXeQwBMMaOyX1N4DlILptBwpzgsfA6-TbarBzm-LznxbpZ20geFm0xRa_PrbjKFfTWf3Ju0LxIFg2g/s640/blogger-image-1400988003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZW4hQPp-2SFo7gruAgI9tMxDRHY37ROSxsxCuz1h-XJz2G65q3zwXJEO5Y3YR2TXeQwBMMaOyX1N4DlILptBwpzgsfA6-TbarBzm-LznxbpZ20geFm0xRa_PrbjKFfTWf3Ju0LxIFg2g/s640/blogger-image-1400988003.jpg"></a></div><div class="separator" style="clear: both;">Thankfully, it is easy to treat, and after the IV fluids and her first dose of antibiotics, Faith is feeling much better. This is the first she's wanted to play since Wednesday, which is great to see and makes Selah happy too! </div><br></div></div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-11688443522560851442013-06-14T16:20:00.001-06:002013-06-14T16:20:45.001-06:00Seriously?!<div class="separator" style="clear: both;">In the ER at one of the Children's satellite locations near Dave's parents' house... We rarely go to the one at the main hospital because the wait is always so long, and at the satellites we are triaged and in a room usually within 10-15 mins. I dropped Noah and Selah off with Dave's parents on the way here, so that's another benefit.</div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkx4ZwTw6IG0BB4k27QtjXsfhN9wRGwEc-kyxW5Lq250eHVWkL1z00JlhZV50xcgKjQaou0Fsq2ABelC6v-K15Rtc-8XBb6dcpv3UrNaCSgdZ2hgZvBE0ZKE-xbjJMTevAtDFXHh5KRuU/s640/blogger-image--1138780193.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkx4ZwTw6IG0BB4k27QtjXsfhN9wRGwEc-kyxW5Lq250eHVWkL1z00JlhZV50xcgKjQaou0Fsq2ABelC6v-K15Rtc-8XBb6dcpv3UrNaCSgdZ2hgZvBE0ZKE-xbjJMTevAtDFXHh5KRuU/s640/blogger-image--1138780193.jpg"></a></div><div class="separator" style="clear: both;">Faith has continued throwing up, and yesterday didn't eat anything and slept almost the entire day. Yesterday we had to give her an enema (fun, fun), which did have results, but didn't stop the vomiting. This morning when she threw up, it had streaks of blood in it.</div><div class="separator" style="clear: both;">I called the urologist's office and the GI doctor's office this morning. The urologist's office ordered Zofran and wanted us to push her to drink lots of fluids at home; the GI's office said with her history we should go to the ER. Since it's Friday, and since the urologist's office hasn't seemed to have a good understanding of Faith's gut history, I was far more inclined to agree with the GI's office.</div><div class="separator" style="clear: both;">They have already done gut X-rays, and finally (5 sticks later) got an IV started for fluids. They tested her pee (what little bit there was) and it came back positive for bacteria, so they need to do a culture, but we'll probably have to wait until the fluids go in so she can actually pee. She didn't even have tears to come out when she cried the last two times they poked her for the IV! </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinoRlumBIJ7NsUYjAdKugBKJw_ZsHkhX-NVbwh77v08qN3aZRWEtUVG8UXf-ucbY_-fh_gvM9q7rBs3eAfiqfuPKTwOKgvHsOUPzd90-oUDaveTasCJrq8x2CKZpmS0LxA_HYZTmOZTAw/s640/blogger-image-1915544600.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinoRlumBIJ7NsUYjAdKugBKJw_ZsHkhX-NVbwh77v08qN3aZRWEtUVG8UXf-ucbY_-fh_gvM9q7rBs3eAfiqfuPKTwOKgvHsOUPzd90-oUDaveTasCJrq8x2CKZpmS0LxA_HYZTmOZTAw/s640/blogger-image-1915544600.jpg"></a></div><br></div><div class="separator" style="clear: both;">The X-rays looked ok to me, just lots of air in her guts, but I'm waiting to hear what the doctor says. He said he could feel stool in there when he palpated her belly, which someone who's had Miralax and an enema (and hasn't eaten!) in the last 24 hours probably shouldn't have...</div><div class="separator" style="clear: both;">SO... Current prayer requests would be for her to feel better when she gets hydrated, with no more vomiting; for her (kidney?) pain to go away; for her to pee enough for the culture test; and for the infection to go away.</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-58259337007689657682013-06-12T22:28:00.001-06:002013-06-12T22:28:46.861-06:00No place like HOME<div class="separator" style="clear: both;">Today started out awesome for Faith, she got up this morning and was acting almost normal! Other than moving slower than usual, she was her normal, happy, playful self. Unfortunately, in our excitement over how well she was doing, it didn't occur to us that she was totally overdoing it. </div><div class="separator" style="clear: both;">Tonight we paid the price for our oversight... The kids and I got home around 7 pm, after stopping briefly at my parents' house (Dave had to work tonight, so he left his parents' house earlier this afternoon). </div><div class="separator" style="clear: both;">While at my parents', Faith threw up. Then when we got home (less than a 5-minute drive), she threw up in the driveway. Since then, she's thrown up probably another 5 times...</div><div class="separator" style="clear: both;">Between all of the throwing up, and trying to get Noah and Selah fed and put to bed, Faith didn't get her pain meds on time. Thankfully, I got her to take some anti-nausea medicine and eat a few Cheerios and the throwing up stopped long enough to get her medicine down. </div><div class="separator" style="clear: both;">I am really impressed with how well the meds are working, especially now that I've seen how uncomfortable she is when they wear off! She was in quite a bit of pain, not wanting to move because of her incision, and complaining of back pain from the epidural. It didn't take long after she had her meds for her to relax and fall asleep, thank goodness!</div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIlPoLVx1JBHnZXDO4LId1iTQ0wz4YgW-oJ5YSROBRQMlyQSKSDcZuycZZ6tIN16wp0DBFSUpr8BhyphenhyphenwpfxplqSLUgQwa4W12QYkv0R7GDa3zilRLmb6rFeaAm5nLSZP1Qo-7THcjjrwqE/s640/blogger-image-766489856.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIlPoLVx1JBHnZXDO4LId1iTQ0wz4YgW-oJ5YSROBRQMlyQSKSDcZuycZZ6tIN16wp0DBFSUpr8BhyphenhyphenwpfxplqSLUgQwa4W12QYkv0R7GDa3zilRLmb6rFeaAm5nLSZP1Qo-7THcjjrwqE/s640/blogger-image-766489856.jpg"></a></div><div class="separator" style="clear: both;">I set up a temporary bed in our room for Faith, until she is feeling better and is less likely to need us in the night. Normally, Faith and Selah share a room, so this way Selah will be able to sleep through without being woken up by Faith.</div><div class="separator" style="clear: both;">I was pretty worried with the throwing up that she might need to go get checked out, but since she stopped I think she is alright. I actually am wondering if the throwing up was caused between the ride home, the heat (it was 90+ degrees here today), the smoke from the wildfires, and the pain from her meds wearing off...</div><div class="separator" style="clear: both;">Tomorrow she is allowed to take a bath and soak the dressing off of her incision. I am curious to see what it looks like under the gauze. In 4 weeks, she'll have a follow-up appointment with a kidney ultrasound to check things out and make sure she doesn't have any kidney scarring.</div><div class="separator" style="clear: both;">Please pray that her recovery continues to go smoothly, with no more nausea/throwing up, and that there is no scarring on her kidney ultrasound when she has that.</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-6097915317686098022013-06-11T16:48:00.001-06:002013-06-11T16:48:13.402-06:00And away we go!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXcYKYH9nAU_BtgfIZ3iCqP82rsv2l7ay_K-agEbIBSn9idJ9GDCKQ6J1a0Wu_AV92HnmZc7RqNskwNAnTRui3SDz6tWgjhM6QVGAPko9nnioL_jJ9P-oHbdOJ0bJ4_qmhO-KH1fjvvuM/s640/blogger-image-1158998048.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXcYKYH9nAU_BtgfIZ3iCqP82rsv2l7ay_K-agEbIBSn9idJ9GDCKQ6J1a0Wu_AV92HnmZc7RqNskwNAnTRui3SDz6tWgjhM6QVGAPko9nnioL_jJ9P-oHbdOJ0bJ4_qmhO-KH1fjvvuM/s640/blogger-image-1158998048.jpg"></a></div><div class="separator" style="clear: both;">Faith is walking...</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwmiRN_qmnxzvA6QxBbzwBjG4olA1f2INhdGgYsyfOFhecfHq_8Gsoe2k2zLeARWmK4N2b9gsYTYGGs2Dgxi7xBkGfNlkXTzJBZNJLcnQMT230AStt9rRYICcpjF4DNYs0YIP6PmF5nE8/s640/blogger-image--574918502.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwmiRN_qmnxzvA6QxBbzwBjG4olA1f2INhdGgYsyfOFhecfHq_8Gsoe2k2zLeARWmK4N2b9gsYTYGGs2Dgxi7xBkGfNlkXTzJBZNJLcnQMT230AStt9rRYICcpjF4DNYs0YIP6PmF5nE8/s640/blogger-image--574918502.jpg"></a></div><div class="separator" style="clear: both;">...her guts are working...</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsS0sCIgFj7AlWQ9akXaRNGZGLmuLFa-pBQDV5P-h9qu334eO22Ti2WH81AzJ-97WMfaeFOEFATINeijCtvdXw3BDP426AlOBeDE4RJBa80oLd5zSvaBt2Y67k9L9Cm0yQzQyLsTvU4mM/s640/blogger-image--157978147.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsS0sCIgFj7AlWQ9akXaRNGZGLmuLFa-pBQDV5P-h9qu334eO22Ti2WH81AzJ-97WMfaeFOEFATINeijCtvdXw3BDP426AlOBeDE4RJBa80oLd5zSvaBt2Y67k9L9Cm0yQzQyLsTvU4mM/s640/blogger-image--157978147.jpg"></a></div><div class="separator" style="clear: both;">...she is playing...</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgs0pu_hy3kA6EE_42pcyCKSReWWz4-rbnFbaMltGHujBVBKlWPalwiIvBEnjSk0VKaAP4CwchVtFwAGM7CNT1ip2TZJ2WZUCx7aYNGA9vFI54FtlqsYmVPufQ9g9CK_FInBMLSJmH3U/s640/blogger-image-1411241019.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgs0pu_hy3kA6EE_42pcyCKSReWWz4-rbnFbaMltGHujBVBKlWPalwiIvBEnjSk0VKaAP4CwchVtFwAGM7CNT1ip2TZJ2WZUCx7aYNGA9vFI54FtlqsYmVPufQ9g9CK_FInBMLSJmH3U/s640/blogger-image-1411241019.jpg"></a></div>...and I am signing discharge papers! Happy Birthday to me! :)</div><br></div><br></div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-77650684181868677912013-06-11T15:12:00.001-06:002013-06-11T15:12:26.194-06:00Baby steps...<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV4_Ca63zCCJm7JGAG3DVMRazSFPvHilavQ6PCmvI6dFnlTcpLKsv1wklPmKZzuO8x_h0bH4Do0D8eYo7_xu_TDncL-v9ayODhK-UDwur49J4vIm2nCPRRndsvQQfuSMzhGxYv9JjphoA/s640/blogger-image--1872537408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV4_Ca63zCCJm7JGAG3DVMRazSFPvHilavQ6PCmvI6dFnlTcpLKsv1wklPmKZzuO8x_h0bH4Do0D8eYo7_xu_TDncL-v9ayODhK-UDwur49J4vIm2nCPRRndsvQQfuSMzhGxYv9JjphoA/s640/blogger-image--1872537408.jpg"></a></div><div class="separator" style="clear: both;">So, we got her to sit up and she didn't cry! But then we made her stand, and that didn't go over well. One major meltdown, a new pull-up, and a suppository later, she is settled back in bed watching VeggieTales Jonah. Here's hoping that the next time we try standing goes a little better!</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-44109975478364788642013-06-11T14:43:00.001-06:002013-06-11T14:43:53.324-06:00A little closer...<div class="separator" style="clear: both;">Faith is doing better than she was earlier, she even ate some of her lunch. Her pain is being controlled much better, unless she moves... The anesthesiologist came in late this morning and took the epidural catheter out of her back, so the only thing left in her is her IV. </div><div class="separator" style="clear: both;">Since the extra tubes came out, we got her cleaned up and changed her into one of her own nightgowns I made for her. Then awhile ago, she had a few visitors who brought her a new kitty (thank you Aunt Steph & crew!). </div><div class="separator" style="clear: both;">Earlier this morning, Noah had an appointment at one of the doctors' offices here, so on the way back to her room he and I stopped in the gift shop on the adult side of the hospital and miraculously found her the only unicorn in the whole place. (Since her last surgery in Boston 2 1/2 years ago when they took her feeding tube out, she has gotten a new unicorn each time she's had any kind of unpleasant procedure.)</div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsdT4k6puoMQDs0-8-oLI90vJcmvXQ9ElapWi5oBRPdRa686PTg-yDj7djs2ncfuGzogqqzi8lSuTjiS0v7jw6EPgRWPhe6NsolfM2anfVHRQSPTAp-f7pxfUy92q0F8YmFQWzBqykMmo/s640/blogger-image-948404032.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsdT4k6puoMQDs0-8-oLI90vJcmvXQ9ElapWi5oBRPdRa686PTg-yDj7djs2ncfuGzogqqzi8lSuTjiS0v7jw6EPgRWPhe6NsolfM2anfVHRQSPTAp-f7pxfUy92q0F8YmFQWzBqykMmo/s640/blogger-image-948404032.jpg"></a></div><div class="separator" style="clear: both;">The nurse practitioner came in a little bit ago to check her out and see if she could go home today. She said Faith looks great, but she would really like her to get up and moving a little bit before she'd feel good about releasing her. She helped me get Faith to standing, but Faith wasn't enjoying it and decided that if she has to stand to go home, she'd rather just stay here...</div><div class="separator" style="clear: both;">One concern that I have had since last night is that they don't seem to be taking Faith's history into account when it comes to things like her eating... The nurses have said her bowel sounds aren't that great, yet she is on a totally normal diet. The anesthesia makes the gut groggy and less active, and then the meds she's on are constipating too, so for her to be putting food in when there's no indication that anything is trying to come out makes me nervous... The nurse practitioner ordered a suppository, so hopefully that will get things moving.</div><div class="separator" style="clear: both;">We did get her to sit up and play Candyland with Daddy, and she isn't crying in pain, so maybe we'll be able to get her standing soon... (I think she has her own rules... like if you get a card with 2 green squares, you just pick whatever 2 you want as long as they are close to the finish!)</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKbn0gRyH5-L0iy25sUZ_kdRXz2m7i39SE4JkV-nDYDAzgMsOlspZJaS6Q-73tH418vWUA50DGsTLYN7B_JtWNsFKEALo9_M2iqG6grAbCycBs27TdHmSFHUSO9veZXRmt4JhnMlt409U/s640/blogger-image--1574586711.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKbn0gRyH5-L0iy25sUZ_kdRXz2m7i39SE4JkV-nDYDAzgMsOlspZJaS6Q-73tH418vWUA50DGsTLYN7B_JtWNsFKEALo9_M2iqG6grAbCycBs27TdHmSFHUSO9veZXRmt4JhnMlt409U/s640/blogger-image--1574586711.jpg"></a></div><br></div><div class="separator" style="clear: both;">Current prayer requests would be for her pain to subside, for her to be able to get up and take some steps, and for her gut to start moving. It would be wonderful to be released today...</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-61574123588497684332013-06-11T08:38:00.001-06:002013-06-11T08:38:23.264-06:00(Not so) Good MorningOvernight went well; Faith got some good sleep. Her epidural was turned off around 6:00 this morning, and the doctor was in around 6:45 to take out the catheter and the two stents.<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha8fUKijijAfUppAQfvJA01KvhGy5ylX-cwWF69Wije8NBkfMym_FdjCZZ7WH9d4CJCbmW6HBcmxM0fegNH5p72Rr57awlQjWuNOsAn3nYTfS3EGEz5Yj7BH4AEpweYBkCNVI7mKKnEO8/s640/blogger-image--1374384461.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha8fUKijijAfUppAQfvJA01KvhGy5ylX-cwWF69Wije8NBkfMym_FdjCZZ7WH9d4CJCbmW6HBcmxM0fegNH5p72Rr57awlQjWuNOsAn3nYTfS3EGEz5Yj7BH4AEpweYBkCNVI7mKKnEO8/s640/blogger-image--1374384461.jpg"></a></div><div class="separator" style="clear: both;">She was doing really well at first, and asked for breakfast even (she requested bacon and eggs). For about the past hour though, Faith is in quite a bit of pain from bladder spasms.</div><div class="separator" style="clear: both;">The nurse gave her some pain medicine and some other medicine to help with the spasms a little while ago; just waiting for those to kick in. In the meantime, she has a whole tray of food she refuses to eat, a cup of juice she won't drink, and is miserable and begging to go home...</div><div class="separator" style="clear: both;">In order to go home, she has to drink 2oz/hr and pee good amounts, and her pain needs to be controlled by the meds she was given this last time.</div><div class="separator" style="clear: both;">Please pray for the bladder spasms to stop and for her pain to be relieved!</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com1tag:blogger.com,1999:blog-2120081140561056228.post-76138153408392151502013-06-10T19:40:00.001-06:002013-06-10T19:40:42.163-06:00Last update for tonight<div class="separator" style="clear: both;">We are in Faith's room, and she is eating. She did need some Zofran; she started out with a couple of Popsicles but they didn't stay down very long. </div><div class="separator" style="clear: both;">Since food service ends at 7:00, we sort of preemptively ordered her food, so she's got a nice tray of Mac & Cheese and chicken tenders that she doesn't feel like eating yet, and she's munching on cheese & crackers and sipping a chocolate milkshake, complete with whipped cream and sprinkles.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgoZ90nM0zmPXc4QefL2xVC6og4AlIv_pv_bRr-2twlBDEIPQC0h5YV7z6AiB3q9Ne0RSoWRwkCTlVbGb6wq6SdeFRKvP120lknspFG9umhD0Oped1a6_oRAz0ain50RCBTFCe3RQQUXg/s640/blogger-image--1784351503.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgoZ90nM0zmPXc4QefL2xVC6og4AlIv_pv_bRr-2twlBDEIPQC0h5YV7z6AiB3q9Ne0RSoWRwkCTlVbGb6wq6SdeFRKvP120lknspFG9umhD0Oped1a6_oRAz0ain50RCBTFCe3RQQUXg/s640/blogger-image--1784351503.jpg"></a></div><br></div><div class="separator" style="clear: both;">Dave's parents took Noah and Selah home, and Dave will be leaving here in a little bit. It has been a long day!</div><div class="separator" style="clear: both;">Prayer Requests: </div><div class="separator" style="clear: both;">Faith's epidural pump keeps alarming (and then stopping before the nurse comes in), for no apparent reason. Please pray that either they figure out what is causing it, or that it just stops!</div><div class="separator" style="clear: both;">Please pray for Faith's pain to be minimal.</div><div class="separator" style="clear: both;">Please pray that she won't have anymore nausea and will be able to eat and drink as much as she wants/needs to. If she does a really good job drinking, there's a chance she could get released tomorrow... which would be a pretty great birthday present for me! ;)</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-28013474544313486792013-06-10T17:29:00.001-06:002013-06-10T17:29:29.629-06:00<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBSJSjGD2CBv-s9gJpXfdStE-5ToOtN1xmrEyVYpjR5m5z45IBb0oe_RDiAEBJvux1-FVewzazYcizA8Ei1IlTFhyphenhyphen6YavlyOQNoPKgqY8xbiTNoJQJeEeyIkEkD80J0MLhhd_gkCUwTos/s640/blogger-image--989880188.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBSJSjGD2CBv-s9gJpXfdStE-5ToOtN1xmrEyVYpjR5m5z45IBb0oe_RDiAEBJvux1-FVewzazYcizA8Ei1IlTFhyphenhyphen6YavlyOQNoPKgqY8xbiTNoJQJeEeyIkEkD80J0MLhhd_gkCUwTos/s640/blogger-image--989880188.jpg"></a></div><div class="separator" style="clear: both;">Faith has an epidural, but I guess needed some extra pain meds when she first woke up, so they gave her some Fentanyl and Morphine. Unfortunately, they didn't bring us back until after that, right about the time the meds were kicking in, so we didn't get to see her really awake.</div><div class="separator" style="clear: both;">We are still in post-op, waiting for them to take us to her room. Noah and Selah both are anxious to see her, hopefully she will wake up at some point so they can see her awake before they and Dave head back to his parents' house for the night.</div><div class="separator" style="clear: both;">Prayer requests: a peaceful awakening, pain that is easily managed with the epidural, and no painful bladder/ureter spasms.</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-62431735067924149902013-06-10T16:30:00.001-06:002013-06-10T16:30:27.145-06:00Out of surgeryBoth doctors have been out to tell us things went well. The anesthesiologist said she wasn't awake yet. She has an epidural for pain overnight, because she has a catheter and two stents (one in each ureter) that will be in place until tomorrow. The urologist expects her to be released on Wednesday, but said she can eat whenever she wants to, which will make her happy :)<div>I will try to post again when they take us back to see her, otherwise I definitely will when we get into her room.</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-66586570130345275872013-06-10T14:39:00.001-06:002013-06-10T14:39:17.719-06:00In the ORI went back with Faith about 20 minutes ago. She got to sniff a skittles-scented mask, and then fell asleep with only a few tears and a couple of good hugs. The surgery should last about 2 hours. <div>We can feel your prayers, thank you! Current prayer requests are for everything to go completely as expected, for waking up to be easy with no issues, and especially prayers against bladder/ureter spasms in recovery.</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-1939334447059725202013-06-10T12:59:00.001-06:002013-06-10T12:59:20.160-06:00Pre-op<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH6YbGMKa-LGvy_sIxVgWHL3uENVZnHRviH0XHJRa2ES8lJTdtUndSXq4ZE5YOCJQcXSbME742CpJ30uOBxMCkbFZsdJcXhz9dq6Pffx0km9veQNqBozB2Y90rCtEdU4a94O0DMjyNyUc/s640/blogger-image--856382199.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH6YbGMKa-LGvy_sIxVgWHL3uENVZnHRviH0XHJRa2ES8lJTdtUndSXq4ZE5YOCJQcXSbME742CpJ30uOBxMCkbFZsdJcXhz9dq6Pffx0km9veQNqBozB2Y90rCtEdU4a94O0DMjyNyUc/s640/blogger-image--856382199.jpg"></a></div><div class="separator" style="clear: both;">Hanging out watching Scooby Doo in pre-op. So far she's only complained about being hungry once! :)</div><div class="separator" style="clear: both;">Haven't seen any docs yet...</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-53137075912262983822013-06-10T08:54:00.001-06:002013-06-10T08:54:00.026-06:00Breakfast of Champions?<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ8_IEcWROJgyYmALFRO1F2ImJ9FA5st4jn1-2OCAtc51NeiQ-5m4084PElo-RedOagxtUX1-iWTpz2bDga5j4kVGFqu-1Vd9mimNBpTz4tOCx7JLx3QaluG9fHqxxItPZyMYj695vGnI/s640/blogger-image--1583832231.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ8_IEcWROJgyYmALFRO1F2ImJ9FA5st4jn1-2OCAtc51NeiQ-5m4084PElo-RedOagxtUX1-iWTpz2bDga5j4kVGFqu-1Vd9mimNBpTz4tOCx7JLx3QaluG9fHqxxItPZyMYj695vGnI/s640/blogger-image--1583832231.jpg"></a></div><div class="separator" style="clear: both;">Faith is allowed clear fluids until 10:30 AM, so breakfast today is chicken broth, jello, and apple juice. Except Faith apparently isn't a fan of jello, so it's just chicken broth and apple juice. I'm guessing she will be a hungry girl tonight, since the surgery is supposed to last about 2 hours, and I'm sure it'll be awhile before they let her have anything after...</div><div class="separator" style="clear: both;">Prayers for no low blood sugar, no rumbling tummy, etc are greatly appreciated!</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-68278221794761833922013-06-09T22:16:00.001-06:002013-06-09T22:16:41.971-06:00Late night party :)Since Faith isn't allowed to eat anything real after midnight tonight, and isn't having surgery until 2:30 PM, she, Dave, and I are having a little "slumber party" of sorts... It is 10:06 PM and she is eating pizza and ice cream, getting ready to watch a movie (and hopefully have another snack or two!).<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRhQEAROY3HuZp8WtzcXnRxJtcswfNH1rL5I8qZNiYCA3CgTEwKIUhZTWeLeZyS7VmQeEQJluWW3bjmHKMdZ_23B65MXuo53wBB3fSIVxPeI3FrQHiGL8XZ9mk9X559E3rVGfwSPfFbA0/s640/blogger-image-798611354.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRhQEAROY3HuZp8WtzcXnRxJtcswfNH1rL5I8qZNiYCA3CgTEwKIUhZTWeLeZyS7VmQeEQJluWW3bjmHKMdZ_23B65MXuo53wBB3fSIVxPeI3FrQHiGL8XZ9mk9X559E3rVGfwSPfFbA0/s640/blogger-image-798611354.jpg"></a></div><div>The anesthesiologist called me earlier tonight to see if I had any questions, and told me that because of some new HIPAA thing, they don't release the medical charts to him until the day of! Imagine his surprise then at learning that this will be Faith's 11th time going under general anesthesia... That policy doesn't make much sense to me, especially for a kid with a pretty complicated history... You'd think they would want the doctors to be as familiar as possible with their patients' histories. Thankfully, the only issues that should be of concern to him are her lack of good peripheral IV access, and the fact that most adhesives basically burn her skin off.</div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8C8ZWWSQAuHQrgEq5fqV2HtjZ-j2qPkZWSnPEqpo8A4WVThCfglw2fi9uW7ebd34ZtA13xnh17ecpojyS4dLPuNm9gAEar4HHKVKmrcPgNeHLXIyEEsa4tEnvZngJZPPfUMs0arifvKo/s640/blogger-image-166853618.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8C8ZWWSQAuHQrgEq5fqV2HtjZ-j2qPkZWSnPEqpo8A4WVThCfglw2fi9uW7ebd34ZtA13xnh17ecpojyS4dLPuNm9gAEar4HHKVKmrcPgNeHLXIyEEsa4tEnvZngJZPPfUMs0arifvKo/s640/blogger-image-166853618.jpg"></a></div></div><div>We have to be at the hospital for pre-op at noon, so it is going to be a long day... Hopefully we manage to get some good sleep tonight. Thank you to everyone who is keeping Faith (and us) in their prayers, we can feel them!</div></div></div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-14654578824712797402013-06-08T12:13:00.001-06:002013-06-08T12:13:42.169-06:00Don't I look good in this?<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEEgC-vYQNRtp9rWNoNVN69TxvOkO-qzVrCSlfvyjmOJJhcMj0A1kVNuI5S9ugVxSelylUy-uKaVQAFUjy5-gcQJx0r92ewjhFtlAKjmauzwQqEY71D7KfKYTttIuViDsPp9Vi35AF60U/s640/blogger-image-1715566574.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEEgC-vYQNRtp9rWNoNVN69TxvOkO-qzVrCSlfvyjmOJJhcMj0A1kVNuI5S9ugVxSelylUy-uKaVQAFUjy5-gcQJx0r92ewjhFtlAKjmauzwQqEY71D7KfKYTttIuViDsPp9Vi35AF60U/s640/blogger-image-1715566574.jpg"></a></div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-28640915592701452862013-05-23T21:07:00.000-06:002013-05-23T22:04:21.483-06:00UpdateWell, Faith had all of her tests and the results are in. First, the good news: her upper GI/small bowel follow-through didn't show any anatomical issues, no bowel dilation or anything else! Also, the test went faster than it ever has before- we started at about 8:45 and were finished by 1:30! And "finished" had a totally new meaning this time too, because we actually were able to see the barium in her colon, a point that I don't think we have EVER gotten to before. Faith didn't have any issues clearing the barium out, either, which had been a worry of mine since in the past she has gotten almost completely stopped up after one of these tests.<br />
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<tr><td class="tr-caption" style="text-align: center;">Faith's stomach full of barium, with no reflux into her esophagus!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lots of barium making its way through her twisty guts</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A perfect patient, with white lips from her tasty barium "milkshake"</td></tr>
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Now, the bad news: Faith's VUR is not resolved, and has not improved at all over the past year, in fact they were able to see better on one side so technically the grade was increased on that side after this test. She has grade 2 reflux on one side and grade 3 on the other. We had talked to her before the test and let her know that surgery was a possibility, so she wasn't too upset, although I'm not positive she understands what exactly it entails... We've talked more about it since we found out it was going to happen, and are doing our best to prepare her. This will be the first surgery that she will be old enough to really understand what is going on, so we really want to help her know what to expect. The past few times she's had any procedures, we've gone out of our way to clearly explain what was going to happen and what she needed to do, and the medical staff has said each time that they wished all of their patients were like her, so I think that approach is working well. I think it's also given her more ownership of her body, her history, and her health, which seems to be coming at the perfect time, since other kids her age have had reasons recently to ask about her scars and why she is going to have surgery.<br />
Her surgery will be on June 10, and will be at the "other" hospital for children in Denver. As silly as it sounds, I think I am more nervous about her having surgery at a different hospital with a doctor who hardly knows her than I am about her actually having surgery! This will be her 11th trip to the OR (not all of those were major surgeries, but all involved general anesthesia), but the last 4 or 5 of those were with Dr. Puder in Boston, and the ones before those were all with the same team of surgeons during her NICU stay...<br />
Every hospital does things differently, so this will be a first-time experience all over again for all of us, we won't be feeling like "veteran" surgery parents this time around. Pair that with the fact that the doctor doing the surgery has met her all of twice for a grand total of about 10-15 minutes and seems to have no understanding of her complicated history... and then he told us we'd "have to remind him" that Faith is allergic to PDS sutures because those are what he usually uses... Needless to say I am feeling pretty nervous about trusting her to this doctor. It's kind of hard to explain I think, or hard for people who haven't been in our shoes to understand why it makes a difference, but the surgeons who took care of her in the NICU did every surgery she had from the very first one when she was just a few hours old to the last one the week before she got out. And Dr. Puder so obviously cares deeply about his special patients that it was incredibly easy to hand her over to him for surgery... This guy makes me feel like I need to write her list of allergies in Sharpie across her belly, since apparently they won't be listed on a hospital bracelet or else they just won't check the bracelet...<br />
I've gotten a bit of a lesson from God through all if this, too. Last year when Faith was diagnosed with the VUR and they said they would put her on antibiotics for a year and watch her, I felt very strongly that the antibiotics were a bad idea and we should probably just do the surgery, but I brushed that feeling aside because I didn't want her to have to go through another surgery. Then, when the antibiotics did what I thought they would and totally messed up her gut flora, I thought again that we should just do the surgery and get it over with, but again I brushed it off... Now I am kicking myself for not listening to what I apparently knew all along was the solution, and praying that Faith won't have any permanent damage as a result of my stubbornness. Dave and I are afraid that she's been having kidney infections all this time, looking back now and knowing that the VUR was not resolved... A lot of her "mystery" symptoms would fit into that possibility (the random unexplained throwing up, the sudden onset of bedwetting when she NEVER wet the bed before, her complaints of pain in areas that didn't make sense for gut stuff...).<br />
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<tr><td class="tr-caption" style="text-align: center;">Faith "driving" the tractor on her field trip to the dairy farm today</td></tr>
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At this point, the surgery is pretty much guaranteed to happen, because as far as we know they won't be doing a pre-op VCUG. So, rather than asking for prayers for healing, we are asking for people to pray that the surgery and recovery will go smoothly- as well as or better than they expect it to go, and that she won't have any lasting damage or negative effects from the VUR or the surgery. She hasn't had many things go as easily or smoothly as expected in the past, but we firmly believe in the power of prayer, and would love prayers from anyone who might read this!Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-48546471895923554492013-05-02T00:20:00.000-06:002013-05-03T14:29:25.171-06:00It's been awhile...I can't believe I haven't posted since shortly after Faith turned 3! Such is life with three kids, I suppose... not a whole lot of spare time.<br />
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<tr><td class="tr-caption" style="text-align: center;">My favorite shot from the family pics we had taken this past fall- it showcases the personalities of the kids pretty perfectly! Faith strikes this "model" pose in a lot of pictures...</td></tr>
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Faith is now 4 1/2, and almost done with preschool. She is "normal" in virtually every way, doing everything other kids her age can do, and incredibly smart- must be all of the fish oil! She will be too young by about a month to start kindergarten in the fall, but she is definitely ready, so I am planning to get around the district's cutoff by homeschooling her for kindergarten this fall and having her test into first grade the following year.<br />
Preschool has been a bit of a challenge for her immune system. We weren't expecting it to be quite as bad as it has been, since Noah was in kindergarten the year before and presumably brought home a lot of germs, and it was never an issue... Starting out the year though I think she was sick at least twice a month, which is a pretty big deal when she only goes 2 days a week! Somehow she avoided getting the flu, in spite of Noah and I both having it, so that was definitely a blessing. It seems like every little cold she gets lately results in a week of vomiting, so I hate to think what the flu would have done to her!<br />
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<tr><td class="tr-caption" style="text-align: center;">Faith's first day of school!</td></tr>
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In my last post I mentioned that she was going to be tested for vesicoureteral reflux. She had that test (and it wasn't traumatic at all- she didn't cry or anything!), and it turns out she does indeed have VUR. We took the "wait-and-see" approach, where they put her on a daily low-dose prophylactic antibiotic (Bactrim) to prevent UTI's and then wait a year and do the test again. She'll be having that follow-up test done on the 15th, and we are praying it shows that the issue has resolved on its own. If it hasn't, she will be having surgery to fix it. There is a less invasive procedure they can do, where they inject a kind of gel into the spot where the ureter enters the bladder, to give it a sort of "faux-valve" so that the urine can't back up, but with as many strange reactions as she has had in the past to random unexpected things, we don't like the idea of putting anything into her body that couldn't be taken back out if needed. So, if she needs it, she'll just have the regular old, unfortunately more invasive, surgical procedure to fix it. Like I said, we're praying we don't have to consider either of those options. Selah actually had only a 20% chance of growing out of her VUR by the time she was 5 years old (because of the grade/severity she had), yet miraculously when they did the follow-up test on her (6 months after she was diagnosed) hers was completely resolved! Hopefully Faith will follow suit.<br />
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The daily antibiotic idea didn't last very long, because it caused her to have bacterial overgrowth within a month or so of starting it... so we stopped that and treated the bacterial overgrowth. Since then, she has been cycling with the bacterial overgrowth about every 6 weeks, and we've been treating it when it comes back with an antibiotic called Alinia and a probiotic called Florastor. That combo works really well, but the probiotics are expensive and not covered by our insurance at all.<br />
We can't figure out why the bacterial overgrowth continues to come back in spite of treatment... it goes away every time we treat it, but still pretty much every six weeks or so, it comes back again. Faith has stumped the docs again too, because consistently the week before the bacterial overgrowth comes back, she has 2 or 3 random incidents of "sleep-vomiting", where she will cough once or twice and wake up covered in throw-up. Then the next week comes all of the typical bacterial overgrowth symptoms- the excessive (and stinky!) gassiness, diarrhea, and stomach pain. No one seems to be able to understand why she is throwing up in her sleep for no apparent reason, and they don't think it's connected to the bacterial overgrowth (but the timing seems awfully suspicious to me...).<br />
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<tr><td class="tr-caption" style="text-align: center;">Picking out a pumpkin on her field trip to the farm</td></tr>
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We saw her GI doctor this past Monday, and we've decided together that it's time to see if we can root out the cause of the recurrent bacterial overgrowth. Next Wednesday, she's going to be having a UGI with small bowel follow-through to see if there is an anatomical issue (like her bowel being dilated again, or something like that), or if she's having motility issues again. Funny little aside- when the scheduling person called me, she said, "It will probably take around 4 hours," to prepare me to be there awhile or whatever... My response to her- "Four hours would be awesome! I'm pretty sure the last one took about 20..."<br />
While I hope that she doesn't have an anatomical (aka potentially surgical) issue, I would love to have a definite cause so that we can come up with a solution. It is so hard to deal with, because she is getting to an age where it really affects her emotionally. I hate seeing her sick, and it seems like lately she isn't feeling well way too often. The worst is when she does her "sleep-vomiting" and apologizes to Dave and I for throwing up in her bed, and cries and says how much she hates throwing up. I have always been thankful that she was too young to remember everything she's been through, and now she isn't too young anymore and it hurts me to see her suffer. Still, she is an amazing testament to God's healing power... I cannot believe that the rambunctious little tomboy princess constantly asking to ride her bike or go to school is the same baby I spent so many hours blogging about four years ago!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIlagOlNsxK3O6-hswpiuuxVAU_NattqjHlnAO5y4VuDUIycAANn-jt9fyDtcC9RRGsdG5L8U0a0X-3ov0VHgMKzdUHifdnznATi9-8vtQv_GcUvLL_YMAYHKYZby8oaWSzkihFevTado/s1600/Faith+School+Pic+2012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIlagOlNsxK3O6-hswpiuuxVAU_NattqjHlnAO5y4VuDUIycAANn-jt9fyDtcC9RRGsdG5L8U0a0X-3ov0VHgMKzdUHifdnznATi9-8vtQv_GcUvLL_YMAYHKYZby8oaWSzkihFevTado/s320/Faith+School+Pic+2012.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Faith's school picture from the fall- a little "before & after"... it makes me cry every time I look at it!</td></tr>
</tbody></table>
It occurred to me as I was looking over the blog to see when the last time was that I had posted that I never shared the story of Selah's miracle healing last October. We have always been firm believers in the power of prayer; there are too many aspects of Faith's story that can only be explained as miracles and answers to prayer for us not to believe it works! But ever since Selah was healed, our faith has been even more concrete.<br />
When Selah was about ten weeks old, she got a fever and I took her to the ER. Turns out she had a UTI (which was the start down the road to getting her and Faith diagnosed with VUR), but the very first thing the ER doc asked when she came into the room was, "Has anyone ever said anything about her head?" No one had ever said a word, although we had noticed that it had kind of a funny shape... The doc recommended that we follow up with a neurosurgeon, to rule out a condition called craniosynostosis, where the plates of the skull fuse together prematurely. We took her to the neurosurgeons at Children's, where they basically took one look at her and positively diagnosed her as having sagittal cranio. They wanted to wait until she was 6 months old or so to do anything about it, which didn't seem right to me, so I took her to a neurosurgeon at the other pediatric hospital in Denver for a second opinion.<br />
In the meantime between appointments, I found a great organization, <a href="http://www.craniocarebears.org/" target="_blank">Cranio Care Bears</a>, that supports families affected by craniosynostosis, and it turns out that one of the founders lives about 20 miles from us. We met up, and she actually came along to the second opinion appointment. She has seen a lot of cranio babies' heads, just because of what she does, and she also agreed that Selah had sagittal cranio. The second opinion doc believed Selah had cranio too, and we scheduled a CT to confirm the diagnosis.<br />
The whole experience of having a second child with a 1 in 2500 birth defect had majorly shaken my faith and I was feeling pretty depressed about all of it. On top of that I was having a pretty hard time adjusting to having three kids, and then Dave left to go hunting. I went to church that Sunday and found our pastor afterwards, crying about how it wasn't fair, and when was it not going to be our turn for all of the bad stuff, etc, and he offered to pray. Selah was in a sling on my chest, fine and dandy, her normal mellow self, and then he put his hand on her head and started praying. She screamed, like she was hurt, until he finished praying, and then she was fine again. On the way out of church, a friend saw me and asked what was wrong, and also offered to pray for Selah. The SAME THING happened- Selah was fine, but as soon as the friend started praying and put her hand on Selah's head, she started screaming. Then she finished praying and Selah was fine again.<br />
A few days later, I took Selah down to the hospital for her CT, and an appointment with the neurosurgeon to discuss the results. She had the CT scan, and then the neurosurgeon sat down with me in front of the computer and showed me every single suture (the joints between the plates in the skull) in Selah's head. Every single suture was open, not a single one was fused! We believe without a doubt that this was a miracle.<br />
I could say I will update after the tests Faith has coming up, but I'm not sure anyone will believe me... I will definitely try though! :)<br />
<br />Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-51260362902860848582011-11-20T22:12:00.001-07:002011-11-20T22:16:02.490-07:00Look who's 3!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi020as7d5cxaStLftpiSW46Mq88C_IyJlT01yHwTwjjdbfs5I3hX_c3IPn4qxWhIl0m49ouEYUSb2PJiYudwexOXPhuS2aIrncHRm5FjuPKw1oWTYW32Xb9k3-hchNPrE_Cb0pYytnMME/s1600/Faith+3rd+birthday+003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi020as7d5cxaStLftpiSW46Mq88C_IyJlT01yHwTwjjdbfs5I3hX_c3IPn4qxWhIl0m49ouEYUSb2PJiYudwexOXPhuS2aIrncHRm5FjuPKw1oWTYW32Xb9k3-hchNPrE_Cb0pYytnMME/s320/Faith+3rd+birthday+003.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib6QAx1teFUl4sMFnhHEydebPG1xDuODKDYAOkX7eRvz9nOq3wVx9-qhzRUFFcxfo7fN1X9Nxe8p4moxjFCsoIftl5IOLcjfRhhGQHdpx1zhbmw-KkrS_B-eOzf1JKaZbq6NCzO0k0pBY/s1600/Faith+3rd+birthday+004.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib6QAx1teFUl4sMFnhHEydebPG1xDuODKDYAOkX7eRvz9nOq3wVx9-qhzRUFFcxfo7fN1X9Nxe8p4moxjFCsoIftl5IOLcjfRhhGQHdpx1zhbmw-KkrS_B-eOzf1JKaZbq6NCzO0k0pBY/s320/Faith+3rd+birthday+004.jpg" width="243" /></a></div> Sometimes it's hard to remember where she started...<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8MaNcF2yHwf1EYAg2oPPA5axKh2iS35XqwvuE9ReEC4kbYmI78YCGbdDoQJT-L37ybyqza39Mayj-9j2ZWokoHAxGZOmfM2sTaMFFAXNM0caRLNUnbwlnvnsmxRfLq5gR3Zn2Hbm1d6Q/s1600/100_0589.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8MaNcF2yHwf1EYAg2oPPA5axKh2iS35XqwvuE9ReEC4kbYmI78YCGbdDoQJT-L37ybyqza39Mayj-9j2ZWokoHAxGZOmfM2sTaMFFAXNM0caRLNUnbwlnvnsmxRfLq5gR3Zn2Hbm1d6Q/s320/100_0589.JPG" width="320" /></a></div>It's hard to remember because Faith is doing amazingly well. She is pretty much completely caught up with everything developmentally; her latest skill is jumping!<br />
On a slightly less positive note, we found out this week that Faith's little sister, Selah, has Vesicoureteral Reflux. Basically, the tubes from the kidneys to the bladder (ureters) are supposed to be one-way, protected with a valve-type system where they go into the bladder. Selah's ureters apparently go into her bladder in a different way, so the urine is able to travel back up to the kidneys from the bladder. She has about a 30-40% chance to grow out of it, so for now she is on antibiotic prophylaxis to prevent her from getting UTI's (because they could cause kidney infections/damage/scarring). In 6 months, she'll have testing again to see if it's gotten any better, and if not, we'll talk about options.<br />
And, because Faith has also had at least one UTI, she will need to have the same testing done ASAP, because there is a 1 in 3 chance that she actually has the same thing. I am finding that to be the most disturbing part of this... Selah will get better, whether she grows out of it or has a procedure to fix it, and she won't remember any of it, so I'm really not worried about her. Faith has been through so much already, and thankfully to this point she has been too young to really remember any of it. I'm afraid she will remember this testing though... it was traumatic for me/Selah, and I'm imagining it will be significantly more traumatic for Faith :(<br />
The test is a VCUG, where they put a catheter in, then fill her bladder with contrast, then take pictures under fleuroscopy as she pees to see if it is refluxing up to the kidneys. Not fun. Holding her down for testing as a baby was one thing, because babies have short memories and the hugs at the end of the test usually erased the trauma. Holding down a (really strong!) three year old is my idea of torture, for both of us. I am crossing my fingers that we might be able to get a sedative for her to take before the test...<br />
Anyway, I will post her results after she has the testing!<br />
<span id="goog_1757656737"></span><span id="goog_1757656738"></span>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com4tag:blogger.com,1999:blog-2120081140561056228.post-91941842789537401192011-09-25T11:30:00.000-06:002011-09-25T11:30:52.002-06:00Big Sister!It's a little belated, but we are happy to announce that Faith officially became a big sister on July 21!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEDIT3h0-aXfbzFWtLExjDuqIQzpcclfcYhGH8lGCeN8X0LgB81RlhjNb175ZT31WfhaDVv9tbSHn6pDd6gnIRf5Zd5JLeeaXeUke8fq6DR1Z7WJN8W7K155DwzymfH7jTRIn1xpmbuaY/s1600/3+kids.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEDIT3h0-aXfbzFWtLExjDuqIQzpcclfcYhGH8lGCeN8X0LgB81RlhjNb175ZT31WfhaDVv9tbSHn6pDd6gnIRf5Zd5JLeeaXeUke8fq6DR1Z7WJN8W7K155DwzymfH7jTRIn1xpmbuaY/s320/3+kids.jpg" width="320" /></a></div><br />
Selah Jean was born in our bedroom at 2:18 AM on July 21, after a quick 3 hour labor. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPe-i0x33hxEYHo6CIwqXf2-OFbyxygIvvtTHZDjFhvQxeoEilsLzN1ABQvX6abZYZWXSFpEbZi0w28b3UaVO9Q40_cQ9J-3Hc6nUuM11p0HsbunUYdjoHYsh1nZGdOerjW81NPf4mkQ/s1600/birth+pictures+074.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPe-i0x33hxEYHo6CIwqXf2-OFbyxygIvvtTHZDjFhvQxeoEilsLzN1ABQvX6abZYZWXSFpEbZi0w28b3UaVO9Q40_cQ9J-3Hc6nUuM11p0HsbunUYdjoHYsh1nZGdOerjW81NPf4mkQ/s320/birth+pictures+074.jpg" width="213" /></a></div>Faith celebrated with a delicious piece of chocolate Birth Day cake at about 3:30 AM :-)<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV6ro5cR76bgxcFsdbhwbKKvMWR9pYwmEBYD42UM8muetoX-7bUMf5KO17cg0YkHmUXLcLNrQzKCjAnERHkNJyB0S13LQy7gYQwQLB8sIH7UKN1n1jQupE_W7NuFN7lxkzwinFfZSP1Sc/s1600/birth+pictures+095.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV6ro5cR76bgxcFsdbhwbKKvMWR9pYwmEBYD42UM8muetoX-7bUMf5KO17cg0YkHmUXLcLNrQzKCjAnERHkNJyB0S13LQy7gYQwQLB8sIH7UKN1n1jQupE_W7NuFN7lxkzwinFfZSP1Sc/s320/birth+pictures+095.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div style="text-align: left;">Both kids are enjoying their new sister very much, and Faith is such a great big sister :)</div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-30035357020856801992011-01-29T15:41:00.000-07:002011-01-29T15:41:18.941-07:00A long overdue updateIt's amazing to me to look back at this blog and everything we've been through in the last 2+ years... reading my post from September 11 makes me cry, so I don't even want to go back and read the posts from the beginning, and the times when Faith was the sickest... Instead, let's focus on the positive, the happy news, everything that's good, and how far we've come :)<br />
<br />
Faith turned 2 in November. We had a small party this year, nothing major, and I actually was late getting to it because I was at a birth (working as a doula). Thankfully, Dave and a couple of very good friends were able to get everything done while I was working, and it all went smoothly. I don't honestly remember much of the party, because the birth I was at had been over 24 hours, and I was totally exhausted... but we were surrounded by family and good friends, all of us thankful for the new milestone Faith was reaching. And, she didn't throw up her birthday cake this year :)<br />
<br />
In December, a number of friends and loved ones donated to help us get to Boston for Faith's scheduled check-up, and her surgery to remove her g-tube. On December 10, 2010, for the first time in her life (except for a couple of minutes right when she was born), Faith became 100% tube-free! She did remarkably well with the surgery- originally they had said we'd be admitted and staying overnight, but she was barely in post-op recovery when Dr. Puder told us he thought she'd be able to go home. We stayed an extra day in Boston just in case, and then made the LONG drive home. Yes, we drove from Colorado to Boston. In December. Yes, we are insane. No, we will probably not be driving that trip again, at least not in December... On the bright side, it cost us about half as much to drive as it would have to fly...<br />
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Faith recovered well from her surgery, and happily showed off her tube-free belly when we got home to CO. It was cute, if anyone asked her where her button was (that's what we called it), she'd lift her shirt and say, "Gone!" And then she'd say something about how buttons are for babies... She's gotten quite a bit more vocal. Before her CAIR appointment in Boston, we were able to go out to lunch with some short-gut friends, and one of them asked how long it had been since we'd used her tube, and Faith responded that she eats with her MOUTH! Pretty amazing for a little girl who just barely a year ago would gag and throw up if she had any real food in her mouth...<br />
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She also started walking sometime this past fall. I can't remember exactly when it was, and with her being the second child and all, I'm sure we didn't write it down... She stood on her own for the first time over Labor Day Weekend, so I know it was after that, but before Halloween, because she walked for this cute picture of her in her costume...<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_kJfBcHhkzQR-CpvwuWM9c0ZBzta8sp0gTLyR8g52R1AuoXUJbepPq4fBGSkffpSdhsKffNNguuWJhtgK79WRyOIHtoG6ySjVgcrTZZ0C7OUOgUPg4H_k5aedfSy2s9nouRkTPEwPFyM/s1600/faith+2026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_kJfBcHhkzQR-CpvwuWM9c0ZBzta8sp0gTLyR8g52R1AuoXUJbepPq4fBGSkffpSdhsKffNNguuWJhtgK79WRyOIHtoG6ySjVgcrTZZ0C7OUOgUPg4H_k5aedfSy2s9nouRkTPEwPFyM/s320/faith+2026.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Faith as Madeline!</td></tr>
</tbody></table>It wasn't too long before Halloween though, because she was pretty unstable still...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSml5SWphjcIEtUQdXqVu1H7mXsKzB2lMTIidFwewI5ZiNHLqmVlIuKDyDN4j48-PpyhaIR6CM-w5nrDiAqDFVRm2xFrD0WeSszrO8GFhhdY_UwIS9TnjuAcSvNqQxt2JSBJFORxvlXE/s1600/faith+2022.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigSml5SWphjcIEtUQdXqVu1H7mXsKzB2lMTIidFwewI5ZiNHLqmVlIuKDyDN4j48-PpyhaIR6CM-w5nrDiAqDFVRm2xFrD0WeSszrO8GFhhdY_UwIS9TnjuAcSvNqQxt2JSBJFORxvlXE/s320/faith+2022.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Anytime she falls, she acts like it was on purpose and starts paying attention to whatever is on the ground, like she was just trying to sit down and look at something...</td></tr>
</tbody></table>Other big news we learned in October- Faith will be a big sister in July! Other than lingering morning sickness, this pregnancy has gone very smoothly and I am very healthy. We heard a strong, healthy heartbeat at our 12-week midwife's appointment, and I've felt the new baby wiggling around in there a bit. I'm in my second trimester now, and thankful to be having such a peaceful, non-stressful experience with our wonderful midwife again, like we had for the first 2 trimesters of my pregnancy with Faith.<br />
<br />
We are planning another homebirth, and I am confident that everything will go as planned this time. I've heard that a lot of women who've had babies with gastroschisis or other birth defects or complications are considered "high-risk" in subsequent pregnancies, and I'm so thankful that we are able to skip the high-risk route. We will be having an ultrasound in a few weeks, just to be sure everything is good, but everything feels completely different this time, so I'm sure it will be fine. With my pregnancy with Faith, something just felt "off" the whole time... I never had the confidence that I have this time around that I'd actually have a homebirth, I just knew deep down that something wasn't right. And, in retrospect, we're able to say that <b>I </b>wasn't high-risk last time, <b>Faith</b> was. Sure, at the time we were afraid I had a serious medical condition, but now we know that my symptoms were diet-related, and since I changed my diet and the symptoms are gone, I'm not high-risk.<br />
<br />
Faith and Noah are both excited to have a new sibling, although I don't think Faith really understands... she loves babies though, and anytime she sees my belly, she yells, "Hi Baby!" One of her favorite games is lifting my shirt to see my belly, saying "Hi baby", "I love you baby", and then pulling my shirt down again and saying "Bye baby". She talks right into my belly button, just like Noah used to talk to her :)<br />
<br />
Another big update, and one that is very recent, is that Dave has finally gotten a permanent, full-time job! You may remember back in February of 2009, while Faith was still in the NICU, that he lost the job he had then as a DUI probation officer. Then in the end of May 2009, shortly after we returned home from Boston, he left for his basic and advanced training for the Army National Guard... he got home from that last February (2010), and was able to work a seasonal job with a friend's landscaping business over the summer, but we were really struggling with trusting God to carry us through the extended unemployment... Thankfully this past Thursday, he was hired to a full-time position with the National Guard! This will be a great step forward for our family, as well as a huge weight lifted from our shoulders. One of the benefits of this job is that we will have the active duty army insurance, which will actually pay for our travel to Boston for check-ups! Most likely, they'll pay for it as reimbursement after the fact, since the one time we had them pay for it up front, they flew us on United and it was a NIGHTMARE (<a href="http://faiths-place-08.blogspot.com/2009/09/were-home-and-our-flight-in-not-so.html">remember that?</a>). That's not an experience I'm looking to repeat... especially considering the next time we go for a checkup, I'll have a newborn as well...<br />
<br />
Other than that, there's not too much to update about. I guess that's why I don't update often- Faith's healthy, growing very well, doing regular 2 year old things, and there's just not that much exciting to say... Hopefully the next update will be in a couple of months to announce that she's potty trained- that would definitely be nice!Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com1tag:blogger.com,1999:blog-2120081140561056228.post-47752359215880294152010-09-10T23:39:00.000-06:002010-09-10T23:39:48.213-06:00What September 11 means to me<b>September 10, 2010</b><br />
This post is a reflection, a way for me to remember and process the events that happened on September 11, 2008, and how our lives have changed since then. If you don't read all the way through, please at least scroll to the end of the post, to see how you can help others during their gastroschisis journeys. It will only take a minute, and it's free! Thank you to everyone who has read the blog, commented, and supported us through these past couple of years!!!<br />
<br />
<i>September 11, 2008:<br />
On September 10, I had an ultrasound and a midwife's appointment. I was 28 weeks pregnant, planning a homebirth, and everything in my pregnancy was going perfectly. But I had a fear I couldn't shake that there might be something wrong with the baby, which was what prompted the ultrasound. The ultrasound was first, and it was sort of strange... they had told us to be ready for it to take about an hour. It took 20 minutes. The tech moved around a lot, and never kept it in one place for too long. We got 4 pictures of our baby's head, and no full body profiles. And afterwards, they had us wait while the radiologist looked at the preliminary report to decide if they needed to do anything else. I brushed it all off as nothing... (I was still having morning sickness at that point and wasn't feeling well, and was mostly just disappointed that it had gone so quickly, and we didn't get a DVD of it like I had with Noah.)<br />
I went to my appointment with the midwife. She said they had called about the ultrasound, wanting to talk to the other midwife and trying to figure out how to get them the report or something, but it was weird... she said to try not to be worried about it, and it was probably just because they weren't used to working with homebirth midwives. My appointment was fine, everything continued to be perfectly normal.<br />
The more I thought about the ultrasound and how strange it was, the more I worried. I called the midwives a few times to see if they had gotten the report yet. They said no, but if it was something to worry about, they were sure they would have heard it already...<br />
September 11, I had an appointment with my family doctor. She had done some bloodwork to try and figure out what was causing my constant pain and fatigue. The bloodwork was fairly straightforward, except that my CRP (a measure of inflammation) was elevated, and my ANA (an autoimmune marker) was positive, with a pattern that suggested I may have Lupus. I asked if that would risk me out of a homebirth... she said she didn't think so, but that it would depend on what a rheumatologist thought. I am very blessed to have a family doctor who supports homebirth <img alt="" border="0" class="inlineimg" src="http://coloradoap.com/forum/images/smilies/smile.gif" title="Smile" /><br />
At the end of the appointment, we mentioned how strange the ultrasound had been, and that we still hadn't heard anything. The doctor called over to get the report, while we went out to the waiting room. (Dave was at work, my mom was with me.)<br />
A few minutes later, the nurse came and got my mom and I, and sat in the waiting room with the boys... It confirmed what I had suspected, I knew something was wrong. My doctor told us the baby had gastroschisis. She said that I would have to transfer care to a high-risk OB practice, and that the baby would have to be at Children's Hospital in Denver, because there are no pediatric surgeons in Northern Colorado. She said I would probably have to have a c-section scheduled around 36 weeks... I think she was nearly as heartbroken as I was to have things go completely in the opposite direction of how I wanted them to go.<br />
I was a mess. My mom took me to see Dave at his office, so I could tell him in person... We stood in the parking lot, hugging and crying. I knew at that moment that if the baby was a girl, her name would be Faith (which I had thought all through my pregnancy, but Dave had fought me on).<br />
I couldn't sleep or eat after that. I called the midwife to tell her the news. She was amazing, and offered to support us as a doula (an offer I wish I would have accepted, in hindsight!). I was so crushed at the moment, and so sure that my only option would be a scheduled c-section, that I turned her down. I stopped reading the birth books I had been reading, and told Dave he didn't have to read anymore, either, because I was sure that we wouldn't get to have any semblance of a birth I would be happy with, anyway, and I didn't want to continue preparing myself if I was only going to be disappointed in the end.<br />
I searched and found a program through University and Children's Hospitals in Aurora that connects high-risk moms with all of the providers they will need, before and after birth, and I scheduled an appointment with the perinatologists at University. I was shocked when they said they wouldn't be able to get me in for nearly an entire month! I spent the next month in worry, not knowing what was going on, constantly afraid that my baby was going to die, or that I was going to go into preterm labor and we would be separated.<br />
The downside of educating yourself is that you learn all of the bad things that could happen... and gastroschisis and lupus both have their own sets of very real risks for babies. There is a 10% risk of stillbirth with gastroschisis, and a source I found cited a 25% risk of stillbirth or premature labor with lupus. I figured if you added them together, my baby probably only had about 65% chance to make it to full term and live... probably not good math, but it's how my pregnant, worried brain worked.<br />
Finally the perinatologists saw me at 32 weeks. They made me feel completely stupid for having planned a homebirth, and acted like I really had nothing to worry about. The good thing was, they did a much more detailed ultrasound, and it showed that other than the gastroschisis, there was nothing wrong with our baby. And it confirmed that the baby was a girl. (We originally didn't want to know, so we hadn't found out at the first ultrasound. But we decided gastroschisis was enough of a surprise, and with how sure I was in my mind that the baby was going to die, I wanted to have a name picked out.) They also assured me I could have a vaginal birth!<br />
I continued having weekly appointments, weekly ultrasounds to check bloodflow through the placenta and cord, weekly checks of the amniotic fluid level, twice weekly NST's, and bi-weekly ultrasounds to check growth... During this time, my mom and I lived with Nathan and Noah in my parents' camper, in a campground near the hospitals. I had decided that I wanted to be there, so that if I went into preterm labor, I would be able to be at the hospital right next door to Faith, so that I would be able to be with her as soon as possible after she was born. I didn't want us to be separated more than I knew we already would be.<br />
I was completely cut off from my normal life, from my friends, and from everything I had wanted. I'm sure I was depressed, but I was also so tired and in so much pain from the "lupus" that I attributed most of it to that. I saw a rheumatologist who said she thought it probably was lupus, but that she didn't think it was smart to start me on medication until after the baby was born, since I was 32 weeks pregnant and most gastroschisis babies are born around 36 weeks... 4 more weeks wouldn't hurt anything, and it would probably be better for Faith not to expose her to anything additional.<br />
36 weeks came, and I fully expected the perinatologists to schedule me for an induction. They didn't. They wouldn't, even when I asked them to (because the research I had read related bowel damage to prolonged exposure to the amniotic fluid, especially in the presence of meconium, which the risk for greatly increases the longer you are pregnant). They did an amniocentisis at 37 weeks to check for lung maturity. It was very painful, in such a weird way... It felt like someone punched me in the uterus- like *directly* in the uterus. Like they took it out and punched it. They also poked Faith in the process of collecting the fluid (she actually had a mark on her back from it for over a month after she was born!). I hurt for the whole rest of the day, while I waited for the results that I was hoping (for the baby's sake) would mean an induction the next day. They called to say it was "negative". No number result, nothing beyond the word negative. Oh, and they said they had a hard time testing it, because there was meconium in the fluid. The very reason I was wanting to be induced. (I wonder now if they thought I was just sick of being pregnant... but honestly, would a mom who had been planning a homebirth *really* be begging for an induction? Any educated mom knows an induction greatly reduces your chances of having a vaginal birth, in addition to being incredibly more painful than a natural labor...) And of course, this was on a Friday afternoon.<br />
I spent the weekend worried about the baby, looking up research study after research study that supported my wishes to be induced (especially in the presence of meconium) and writing down the citations to take to the doctor, to try and talk them into it. I actually ended up going to L & D for something (I can't remember what), where they explained that it WASN'T meconium in the fluid, it was actually just bile, which you would expect when the intestines are freely floating in the fluid. I was scheduled for an induction the following Friday, at 38 weeks. I was planning a drug-free induction, using a foley bulb and nipple stimulation, if needed... thankfully it didn't come to that. (Apparently, if you threaten me with induction, I go into labor...)<br />
On Wednesday I went in for my 38 week appointment. I told the OB I had lost my mucus plug, and that I thought I was in early labor. She checked me, and said my cervix was exactly the same as it had been (which wasn't much of anything in terms of dilation or effacement), and that I probably wasn't in labor, and they'd see me on Friday for the induction. Wednesday night around 10, I told my mom she'd better get some sleep, because I knew I was in labor. I managed to sleep until about 2 am... I woke up to go to the bathroom and was having regular painful contractions. I waited about a half hour before waking my mom up. If we had been somewhere more conducive to laboring, and less likely to wake up two 2 year old boys with my moans, I'm sure I would have waited much longer to go to the hospital... especially since we were so close. As it was, Dave and my dad had an hour drive to get to us, so it was about 4 by the time Dave, my mom, and I got to the hospital.<br />
The labor was so intense. I was sure I was going to be at 6-7 cm, because it felt like I was in transition. I recognize now that the intensity of my labor probably had a LOT to do with all of the fears I had surrounding this birth and what would happen to Faith afterwards. One of the many reasons I should have taken Kim up on her offer to be our doula... I was only 4 cm, but contracting regularly, so they admitted me. I had to be on the monitor continuously. I didn't even know telemetry monitors existed, and never asked about it, so I was essentially "chained" to the machine, and had about a 2-3 foot radius for mobility. Of course, because I was on the monitor, that meant I couldn't use the tub or shower for relief...<br />
I had SO much hip pain. I never really focused on how Faith was positioned while I was pregnant... it's funny, I could draw you a picture on my belly to show you exactly how Noah was positioned, but I honestly have no idea of where Faith was. I knew she was head down, and that is pretty much all that mattered at the time... and because I knew her intestines were floating around in there, I was very hesitant to feel around like I had with Noah to figure things out... thinking of how much pain I was in, and knowing after the fact that she had been tangled up in her cord, which kept her from descending, I'm sure she was positioned pretty funky. Also, my cervix was dilating even though it wasn't effacing, which may have had something to do with it as well...<br />
Sometimes I'm still amazed by how present God was in the whole situation. Probably at least 6 or 8 times during labor, they checked me to see if they could break my water and help things progress. Faith was still floating each time, so they couldn't. The one time they thought they could, the doctor actually had the hook in hand before deciding at the last second not to... I think that decision not to do it saved us from a cord prolapse and emergency c-section, since we knew after Faith was born that she'd had the cord all wrapped around her head (she had bruising across her face from it, and it was around her neck at birth).<br />
Since I wasn't making any real progress, and they weren't able to break my water to see if it might help, they started mentioning the possibility of a c-section. I decided that if they were going to end up doing a cesarean anyway, I might as well get the epidural and see if it might help... Because I was high-risk, the anesthesiologist had been required to come up and introduce himself, and explain the epidural to me when I was admitted. At the time, I had blown him off, assuring him I wouldn't need his services because we were planning a natural birth... so when he came back to give me the epidural, I think he felt sorry for me. He gave me a VERY light one, so I could still feel every contraction, only they were painless. I could still move and feel my legs, all the way down to my toes. I just didn't have the awful pain anymore.<br />
The epidural allowed me to relax. I was so exhausted, and the pain had been so bad... the relief from it was enough to make me stop thinking about everything that was going to happen after Faith was born, and suddenly my body started making progress. My water broke on its own about 20 minutes after the epi was in. Probably 15 minutes after that, I started pushing the "boost" button on it, as I was feeling TONS of pressure. They came in and checked me, and I was complete and ready to push. I loved that I could feel everything- I totally had the urge to push, and I felt Faith sliding down and out...<br />
I only pushed a few times before Faith's head was born, with the cord wrapped tightly around her neck. (Interestingly enough, despite all of her cord antics AND the epidural, her heart rate stayed perfectly stable throughout the entire labor.) As the doctor went to unwrap the cord, the rest of her was born, and the cord broke right where it attached on her belly. Immediately she was whisked away to be assessed by the 20 or so neonatologists and neonatal nurses and nurse practitioners, while they simultaneously worked to stop the bleeding from her severed umbilical blood vessels (there was NOTHING there to clamp!). All my mom, Dave and I noticed was how HUGE and purple her intestines were... none of us could imagine how they would be able to get them into her tiny body.<br />
A little while later, they brought her over to show her to me, before they took her away to the NICU... I was able to touch her head and give her a kiss before she left the room. Within 2 hours, she was baptized and on her way to Children's for her first surgery. Less than 12 hours after her birth, I was discharged and next door at Children's with her. The road since then has been a very winding one, with lots of ups and downs. None of us could have predicted how things would go, or where we would end up...<br />
The most amazing thing to me is that it has already been 2 years since all of this started... It seems like it was just yesterday. A lot of parents who have been through similar struggles with their children say that once you are on the other side, it will all be a distant memory... I'm wondering when that is supposed to happen. It is all so fresh. The feelings are right there, and as we go into September 11, I can remember exactly how I was feeling 2 years ago...<br />
We were lucky to have the support of family and friends through everything we experienced. But I didn't have anyone really who had been through what we were going through. There were a couple of blogs that I found and read, but that was about it. Thankfully, families going through this journey now have a wonderful organization called Avery's Angels to support them. I am proud to be a part of this organization, to offer new parents support and advice as they travel their own twisting, turning roads through a gastroschisis pregnancy and NICU stay... If you would like to do something to help these families, please consider voting for Avery's Angels in the Pepsi Refresh campaign, spreading our story, and asking your friends to vote, too. Go to <a href="http://www.refresheverything.com/averysangels4gastroschisisbabies" target="_blank">www.refresheverything.com/averysangels4gastroschisisbabies</a> EVERY DAY and vote, or text 101825 to 73774...<br />
And as you remember your own experiences from September 11, think of ours, and how in an instant, our lives turned upside down. Be thankful for what you have, hug your kids, and remember to live in the moment... while also knowing that if something unexpected does happen, you will get through to the other side, and hopefully you will be a stronger, better person from the journey. </i><br />
<div style="text-align: center;"><b>Faith at birth:</b><i> </i></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinqm6ymlklOx6xgL-Ox6jXmAe6Sw8HErzF-kBmvvATp3qdvKNvIlrfyk1Fe8br2KYr9cdIoohj2eDGguwQ0y1N5HfQ-DpgNdw3ICnkMQ6SYM1b84iJ-hTWldaMpLdqHA-epwXLiyOSqkQ/s1600/faith+first+pic.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinqm6ymlklOx6xgL-Ox6jXmAe6Sw8HErzF-kBmvvATp3qdvKNvIlrfyk1Fe8br2KYr9cdIoohj2eDGguwQ0y1N5HfQ-DpgNdw3ICnkMQ6SYM1b84iJ-hTWldaMpLdqHA-epwXLiyOSqkQ/s320/faith+first+pic.JPG" /></a></div><div style="text-align: center;"><b></b></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><b>Faith today, September 10, 2010:</b></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JYl8HutIL6wceaY5tiUYBuU87BsIKLYrMDD68tyDKPlUdSy5K-gVnU0IPGRNwCVidso0Rg4_4KY0pYifqBXXt4V6ziOzlkfDPENoxQfIvtH-bujW4tZTSUFm5pPR1NTV9wFOimUru7E/s1600/faith+1931.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7JYl8HutIL6wceaY5tiUYBuU87BsIKLYrMDD68tyDKPlUdSy5K-gVnU0IPGRNwCVidso0Rg4_4KY0pYifqBXXt4V6ziOzlkfDPENoxQfIvtH-bujW4tZTSUFm5pPR1NTV9wFOimUru7E/s320/faith+1931.jpg" /></a></div><div style="text-align: center;"><b> </b></div>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com1tag:blogger.com,1999:blog-2120081140561056228.post-85944450412945231162010-08-02T18:30:00.001-06:002010-08-02T18:31:16.160-06:00HELP! Please vote!Avery's Angels Gastroschisis Foundation (which I am a member of/volunteer for) is currently campaigning for a grant from the Pepsi Refresh program.<br />
The grant would be $250,000, and would be an amazing opportunity for the charity to fund a symposium for the surgeons and other doctors and professionals who deal with gastroschisis on a regular basis, to get everyone on the same page and create standards of care that work well and help these babies get better and go home, with the easiest recovery possible. It would also create more opportunity for the group to be able to help the many families affected by this birth defect.<br />
<a href="http://pep.si/acD4Ir">http://pep.si/acD4Ir</a> PLEASE visit the link and vote every day in August!!Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com0tag:blogger.com,1999:blog-2120081140561056228.post-87568149198027112272010-06-13T00:58:00.003-06:002010-06-13T20:40:23.883-06:00Baby Genevieve<b>Saturday, June 12</b><br />
So, yesterday was my birthday. Faith and I had a wonderful time at dinner with <a href="http://www.littleblaise.blogspot.com/">Blaise</a> and her parents, and <a href="http://www.eleanorbrogan.blogspot.com/">Ellie</a> and her parents! I love being able to get together with parents when we all can understand pretty much exactly what everyone else has been through.<b> </b>The good news is, we will get to see them again tomorrow, as we all walk in the <a href="https://howtohelp.childrenshospital.org/walk/pfp/?ID=KR0018">NSTAR Walk for Children's Hospital</a>!<br />
I mentioned <a href="http://www.brorsfamily.com/">a family</a> in my last post that was coming up from Jacksonville, so that their little girl could get on Omegaven. I met Tiffany, the mom, today, and immediately all of my feelings from March of last year came rushing back, and I remembered everything I felt then, and was overwhelmed by how far Faith has come in that time... We talked for over 2 hours, and will hopefully get together once more before Faith and I go home.<br />
As probably everyone who reads this blog knows, I believe everything happens for a reason. I didn't schedule Faith's appointments for this checkup, they were scheduled by Alexis, and I just bought plane tickets accordingly. When I found out the checkup was so close to the walk, I decided we might as well stay out a couple of extra days. And now, <i>it just so happens </i>that this family, whose story has been so similar to ours (and yet in many ways, so much more difficult!), comes to Boston on the day that we otherwise would have gone home!<br />
Tiffany is here with <a href="http://www.prayforgenevieve.com/">Genevieve</a> alone. Her husband, David, is home with Genevieve's twin sister, Gwendolyn, and her three older siblings, Jocelyn, Nathan, and Zachary. I remember how difficult it was to be here, in this huge strange city, by myself, with a sick baby... knowing that my son and husband were at home, going on with life without me. It was the most difficult, yet necessary, thing I have ever done.<br />
I also clearly remember the costs of it all. Housing is not cheap, even in the patient housing ($30/night). Gen is in the NICU, so Tiffany can't just stay with her at the hospital, like I could when Faith was inpatient. And if you think groceries are expensive where you live, you should go shopping here sometime! On top of that, Tiffany did not have the "luxury" of flying commercial- they came on a Leer jet as a medical transport- so she had to pack pretty sparingly, and probably doesn't have a lot of the supplies she would have packed for when Gen is eventually outpatient, if she'd had room to pack them. (I was able to bring Faith's bouncy seat and a nice stroller, and we were fortunate enough to have a pack & play with a bassinet donated to us by one of our blog readers.)<br />
I'm telling you all of this because Baby Genevieve and her family need help right now. They have been through so much, and they have so much of the journey still in front of them... I am going to copy their story into this post now, and I want to ask that if you have ANYTHING at all that you can give, anything from $5 to even being so generous as to donate a pack & play w/ bassinet for Gen to use when she is outpatient, please contact me, or go to one of their websites to make a donation: <a href="http://www.prayforgenevieve.com/">www.prayforgenevieve.com</a> or <a href="http://www.brorsfamily.com/">www.brorsfamily.com</a><br />
<blockquote><blockquote><div style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">Genevieve Brors is a 3 month old little girl, born with gastroschisis. She is a twin sister to Gwendolyn and little sister to Jocelyn, Nathan, and Zachary, and daughter to Tiffany and David Brors. Genevieve was at Wolfson’s Children’s Hospital in Jacksonville from when she was born on Feb 17<sup>th </sup>until June 11<sup>th </sup>. She is now at Children’s Hospital Boston.<o:p></o:p></span></div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><br />
</div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">This is her story, as told by her mother, Tiffany:<o:p></o:p></span></div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><br />
</div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">Genevieve has had a lot of complications in her short life. She was born with gastroschisis (her entire intestine on the outside of her body). A portion of her small intestine had died off and therefore was not attached to her stomach. Because the actual intestine was not attached to anything at one end it did not develop normally and was shriveled and full of holes. At 3 hours old, she had her first surgery to repair all of the holes in her shriveled intestine. <br />
<br />
She spent 8 weeks with an ostomy bag (a bag to collect everything before it goes into the bowel) so that nothing would pass through her intestinal tract, allowing it to heal. When Genevieve was 8 weeks old she had her second surgery, which reattached her intestine to her stomach and closed up her belly. <o:p></o:p></span></div></blockquote><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY3PTgUuC1k3NEFvpg4kVPBEkzfTJSRleWJ2U5LmvVRC1xEp7w4xQLxcPBYGoaoJzAl2Vws3qIwIJygWtSoCECPOz0IE1PMXLaSDcn7dcCNyQ0cf1webuR_yR6jsUuIKYe7XDqfv6yA6Y/s1600/IMG_0755.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY3PTgUuC1k3NEFvpg4kVPBEkzfTJSRleWJ2U5LmvVRC1xEp7w4xQLxcPBYGoaoJzAl2Vws3qIwIJygWtSoCECPOz0IE1PMXLaSDcn7dcCNyQ0cf1webuR_yR6jsUuIKYe7XDqfv6yA6Y/s320/IMG_0755.JPG" /></a></div></div></blockquote><blockquote><blockquote><span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;">Things kept going along well, then we would have a set back, then they would get better, then we would have a set back. Finally we thought we were about ready to take her home. She was eating well and going to the bathroom like she should! We were so excited to have her coming home.</span></blockquote><blockquote><span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;">On Mothers’ Day I was there visiting with her and she was acting strange, crying a lot and just seemed uncomfortable. It was just out of character for her, she is a normally happy alert baby who is easily comforted. About 7pm I left and on the way out the door I mentioned to the nurse that she seemed gassy and to please ask the doctor for something to relieve her pain. By the time I got home Genevieve was almost dead. </span><br />
<span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;"> </span><br />
<span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;"> I called the hospital when I got home just to check on her and I couldn’t get a hold of anyone. It took about an hour and the doctor called us to say that she was really sick and they were calling in the surgeon immediately. She said to get there as soon as possible. Surgery called us shortly after to get permission to take her back to the operating room over the phone because they were pretty sure she wouldn’t live long enough for us to get there and sign it. When we got to the hospital the priest was baptizing her and doing her last rites. We were in a daze. They rushed her into surgery and left us by saying that they didn’t expect her to live through it so say good-bye. I was absolutely devastated.</span> </blockquote></blockquote><blockquote><blockquote><span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;"> </span><br />
<span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;"> Genevieve made it through that surgery alive with only a 10% chance. Her intestine had twisted and died inside her. It caused her to get a deadly infection called NEC that basically kills the affected tissue and starts decomposing it while you are still alive. It is horribly painful. She was too sick and swollen to put what was left of her intestine back into her body so they put it into a plastic bag called a silo on the outside of her body. She was tremendously sick but she was still alive against all odds.</span></blockquote></blockquote><blockquote><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY3PTgUuC1k3NEFvpg4kVPBEkzfTJSRleWJ2U5LmvVRC1xEp7w4xQLxcPBYGoaoJzAl2Vws3qIwIJygWtSoCECPOz0IE1PMXLaSDcn7dcCNyQ0cf1webuR_yR6jsUuIKYe7XDqfv6yA6Y/s1600/IMG_0755.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH2-71TQ-TEPzKloc9fEJ4fVPSVzWn2peLNronGzJxA2fY6qivNvWXMqrJ0oamfeYMBc4eN4SoAvcNNj5jLuMQqwiA2M1wBiR2nPoRT87qLOQrXVn2RsWSni4-xNc8IdV4-oCBmG8_d2Y/s1600/IMG_0654.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH2-71TQ-TEPzKloc9fEJ4fVPSVzWn2peLNronGzJxA2fY6qivNvWXMqrJ0oamfeYMBc4eN4SoAvcNNj5jLuMQqwiA2M1wBiR2nPoRT87qLOQrXVn2RsWSni4-xNc8IdV4-oCBmG8_d2Y/s320/IMG_0654.JPG" /></a></div></div></blockquote><blockquote><blockquote style="color: #a64d79;"><div style="font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">Her surgeon came to check on her the next morning and noticed a few areas that didn’t look very good on the intestine that was in the silo. She scheduled Genevieve for her 4th surgery the next day to investigate those areas. The next morning she was taken back to surgery. Her surgeon thought there would be a few inches of not so good tissue that needed to be removed. We were not so lucky. When the surgeon began to investigate her bowel she found that most of it was dead. It was so bad that the surgeon herself called us during the surgery and told us that she was in even worse shape that the previous surgery where she only had a 10% chance of surviving it. Her odds of surviving we so low that she couldn’t give us a percentage for survival. <br />
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When she had finished salvaging what she could of Gen’s intestine we all had a meeting. The news was devastating. Genevieve didn’t have enough intestine left to survive and what was left was sick. The surgeon had to sew live tissue to dead tissue because of where the bowel had died. She was 100% sure that it was going to leak stomach acid into her abdomen so she left her cut open and put a vacuum over the wound to pull out the acid so that she wouldn’t start digesting all of her internal organs. </span></div><div style="font-family: "Courier New",Courier,monospace;"><br />
</div><span style="font-family: "Courier New",Courier,monospace; font-size: 11pt;">Her liver was also failing because she had been on IV nutrition for so long. IV nutrition is not designed for long term use and causes acute liver failure. She needed a liver and bowel transplant if she even made it through the night. She said that we couldn’t even go day by day because it was minute by minute with her. She was deathly sick.</span></blockquote></blockquote><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZNzTyR9R5ZYqHCv21JLyszTcEXxNIjx_tEwdQtNRsqRczwvug9v7P36Kqj8QOaprgdXRmvfSgSe8s4-fFWJ00VTBkcpboGtveADoS2mbvCnFqkatFetWHd9Uxvpd-GyNUcCbwfbUby6Y/s1600/IMG_0825.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZNzTyR9R5ZYqHCv21JLyszTcEXxNIjx_tEwdQtNRsqRczwvug9v7P36Kqj8QOaprgdXRmvfSgSe8s4-fFWJ00VTBkcpboGtveADoS2mbvCnFqkatFetWHd9Uxvpd-GyNUcCbwfbUby6Y/s320/IMG_0825.JPG" /></a></div><br />
<blockquote><blockquote><div class="separator" style="clear: both; color: #a64d79; font-family: "Courier New",Courier,monospace; text-align: left;"><span style="font-size: 11pt;">But Genevieve hung on. We were counseled to make her comfortable and let her pass because the life of a transplant patient is hard and she didn’t have much of a chance anyway, and because we have 4 other children to care for. Genevieve refused to give up. She was not ready to die. We agonized over that decision and decided that if Gen was willing to fight for her life then so were we. <br />
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Within a couple of days Gen was fighting against the ventilator but her doctor didn’t want to take it out incase she needed another surgery. It was really bothering her though so she grabbed it and pulled it out herself. Everyone was amazed that she was breathing perfectly on her own. Three holes opened up in her intestine, but her surgeon expected that and the wound vac was keeping her from getting an infection. Gen was healing so aggressively that her belly wall actually started to close under the wound vac. Her body is so incredible!<br />
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Anyway, over the last two weeks in Jacksonville, some amazing things happened. She was able to have 2 drains removed from her, she is breathing on her own, she came completely off antibiotics, the wound vac was replaced by an ostomy bag, and one of the holes in her intestine closed on its own. All of the doctors were astounded at her progress. The only problem with all of this was that she was still on the IV nutrition that was causing her liver to fail. Everyday her liver got worse because of it.</span></div></blockquote></blockquote><blockquote><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8IF-BIiFMta3eYhe6liJu0f23RqUCbAuN4Hs0wiDZlpjKdZGP8SzT5EHYMbkopo6wpvOC7x-FYtUedTn8tf7uGMMDqcXAIyZgnG2xuZ4dSDRTSgYKVEFLOTRSbV5mYiAei4j4F-vN19Q/s1600/IMG_0841.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8IF-BIiFMta3eYhe6liJu0f23RqUCbAuN4Hs0wiDZlpjKdZGP8SzT5EHYMbkopo6wpvOC7x-FYtUedTn8tf7uGMMDqcXAIyZgnG2xuZ4dSDRTSgYKVEFLOTRSbV5mYiAei4j4F-vN19Q/s320/IMG_0841.JPG" /></a></div></div><blockquote><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">The doctors in Jacksonville did their best to minimize the damage and only gave her the lipids (what causes the damage) 2 times a week. However, this wasn’t enough calories for her to grow and develop, so it was a balancing act to keep her alive on the medicine that was killing her. <o:p></o:p></span></div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><br />
</div><span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;">Thankfully, there is a different kind of medicine for the IV food (called Omegaven) available at Children’s Hospital in Boston, and it has been shown to reverse the liver damage in over 200 children with similar conditions. After three appeals to the insurance company, they finally approved us for a transfer to Boston for 30 days. On June 11<sup>th</sup>, Genevieve and I transferred to Boston. </span><span style="color: #a64d79; font-family: "Courier New",Courier,monospace; font-size: 11pt;"></span></blockquote></blockquote><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiawk9yu6yONGZqj83sscbu_8oKdUBfcCXn-CSkufdNRwewmj4QoTlOArlEaG_UDouP9yntNl0gtxcj4Yz-QXWLDjxt0sS9c0KufJmDfKvZIhww-s9k-aOZqC0seTdLTcniG5BplbL7dA8/s1600/IMG_0848.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiawk9yu6yONGZqj83sscbu_8oKdUBfcCXn-CSkufdNRwewmj4QoTlOArlEaG_UDouP9yntNl0gtxcj4Yz-QXWLDjxt0sS9c0KufJmDfKvZIhww-s9k-aOZqC0seTdLTcniG5BplbL7dA8/s320/IMG_0848.JPG" /></a></div><blockquote><blockquote><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><span style="font-size: 11pt;">The costs for transport, long-term hospital care, relocation, medicine and transplant are astronomical! Just the one medicine (Omegaven) is $75.00 a day. So far we have been paying for minimal expenses in dealing with all of this but even now it is adding up. We have 4 other children who are out of school and we have to pay for care for them because we have to spend so much time at the hospital. <o:p></o:p></span></div><div class="MsoNormal" style="color: #a64d79; font-family: "Courier New",Courier,monospace;"><br />
</div><div class="MsoNormal"><span style="color: #a64d79; font-family: "Calibri","sans-serif"; font-size: 11pt;"><span style="font-family: "Courier New",Courier,monospace;">We were commuting an hour each way to the hospital sometimes several times a day while Gen was in Jacksonville. My husband’s mother passed away on Memorial Day, so we have had to buy plane tickets to Chicago and deal with those expenses. The list goes on and on.</span><br />
</span></div></blockquote></blockquote>Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.com1