Back Surgery

December 1- Back on October 20^th when the KTVX Channel 4 television news crew was doing a short documentary on the Newborn Intensive Care Unit (NICU) at Primary Children’s Medical Center, we were told that Sarah had been included in a few of the shots, but no one would say whether or not she would actually be in the documentary.  They couldn’t even tell us when or if it was going to be aired.  The answer came during the week.  There were a number of commercials during the week previewing the show that was to be broadcast tonight.  Sarah was in every commercial.  The program was titled, “Born on the Edge”.  Sarah’s story wasn’t told, but she was being held and fed by one of her nurses who explained more about all the sick babies that were in the NICU and the care being provided by the nurses.  There were some good shots of Sarah.  The program made you appreciate how ill some of these babies are and how blessed we are to have a hospital so close with the skills and knowledge to save many of them.

Sarah has been doing extremely well.  She’s off her oxygen and eating well. She’s been gaining some weight too.  We wish she didn’t have to go in for another surgery, but we’re preparing ourselves for it.  It’s not for another 2 weeks.  She will need the approval of her cardiologist before the surgery can actually take place.  That visit is scheduled for the 11^th.  She really does need the surgery, so hopefully her heart will allow it.

December 11- Had an appointment with Sarah’s cardiologist today.  She had an X-ray and an ultrasound of her heart.  There were no surprises and most importantly, no heart congestion.  He thought that she was doing very well and gave his approval for her upcoming surgery.

December 16 – Sarah’s surgery is scheduled for tomorrow, so they needed to have blood drawn today.  She cried at the poke, but that was all.  They took it from a vein in her arm.  Fortunately, it went well and we weren’t at the hospital for very long.  After we got back home, Sarah’s grandfather (my father-in-law), a close neighborhood friend, and I gave Sarah a priesthood blessing to help both her and her doctors get through the surgery tomorrow without complications.  Her mom and I also started our fast for her tonight.  In addition to all the prayers, it’s one of the only physical ways we have to show our faith and serious desires to have the Lord bless her.  It brings us comfort as well, knowing that we are trying to do our part, as little as that may be.  Our meager efforts only show our faith.  The Lord does all the significant work.  Sarah had to start her fast from formula as well, although hers wasn’t voluntary.  She couldn’t have anything but water after 2:00 a.m.

December 17- They don’t like to have the babies go for too long without food, so they are scheduled for surgery first thing in the morning.  Sarah wasn’t the first on the schedule, however, and we didn’t need to be at the hospital until 8:30 a.m.  We were a bit frustrated to learn that Sarah needed to have another blood draw.  The one done last night showed a low platelet count and they needed to know if that was an anomaly or if that was something they really needed to deal with.  A low platelet count would mean a lot of extra bleeding. 

The lab technician assigned to do the draw tried to find a vein in her right arm, the opposite arm from the one used last night.  He couldn’t find one that he was comfortable with, so he tried the arm they did last night.  He inserted the needle and missing the vein, started moving the needle around in her arm hoping to find it.  This went on for 30+ seconds with no success.  Sarah was screaming in pain, and he started crying too.  He was clearly frustrated and I’m sure, feeling a lot of stress.  He finally withdrew the needle, but after about a minute, he tried it again in the same arm.  Still no success.  I know that he was doing his best, but at this point, I was pretty frustrated and tempted to have him stop.  He called another lab technician for help.  She was obviously more experienced, or talented, and successfully made the draw the first time using the right arm, the one he couldn’t find a good vein in.  She made it look so easy. 

We thought that we were finally done with all the poking only to learn that we were just starting.  A different nurse or lab tech, not sure which, had to do a bleeding time test.  An automatic device stabbed two small knives into her right forearm.  A timer was then started to see how long it would take to stop bleeding.  It took 6 ½ minutes, which is normal.  We were told that this was all precautionary testing. 

Unfortunately for Sarah and our elevated stress levels, we weren’t finished yet.  A third nurse or lab tech came in and said they needed more blood.  They couldn’t use what had just been previously drawn.  By this time, I’d had enough and objected.  Could they really be that incompetent?  They explained that the anesthesiologist wanted an electrolyte study done which couldn’t be done on the sample already taken because there wasn’t enough.  Apparently, the study request was made after the earlier blood draw.  These people really need to learn to communicate better and more effectively so they don’t have to put these poor babies in so much distress, let alone their parents.  So once again, she had a needle put into her right arm.  Fortunately, it went quick and simple.

Sarah was given a shot in her leg in preparation for surgery.  It was supposed to make her sleepy.  The anesthesiologist came for her right before noon.  He explained the surgery to us, including his role and all the standard risks involved.  He then took her off to surgery.  At 2:45 p.m. we got a call in the waiting room saying that they were just finishing up and that we should wait for the surgeon to come and talk to us.  She never came.  At 3:45 p.m. we decided to go to the Pediatric Intensive Care Unit (PICU) where she was supposed to go after her recovery, to see what they knew.  We found out that Sarah had been there for about an hour, but no one bothered to tell us.  What a day!  

She was pretty much out of it still, but she cried out in pain with every touch or movement she made.  She was awake enough to take 2 oz. of apple juice.  They started her on a continuous Nubain (semi-synthetic opioid analgesic) drip for the pain.  The neurosurgeon finally came and informed us that everything went really well.  The fat lipoma was much larger than expected, but she got most of it without any problems.  Some bone had to be removed from some of her vertebrae in order to get to the lipoma.  She used a laser to cut it away from the spinal cord, which is more precise than a scalpel.  She didn’t think there would be any problems in the future, but only time would tell.  

Because of the nursing shift change, we didn’t get to stay very long.  I did get to hold Sarah right before we had to leave.  It was a little awkward, since the surgery was on her back and I really didn’t want to put any pressure on it.  How do you hold a baby in your arms and not put pressure on the back?  Thank goodness she was on some serious pain medication.  We hated to go home, but there was really nothing else we could do for her tonight.

December 18- Sarah did really well today.  She was taken off oxygen and had the catheter to her bladder pulled out.  I guess they needed that so they could measure her urine output to make sure she was staying hydrated and to determine her kidney output.  She’s eating again and took almost 4 oz. for me tonight.  She had a slight fever, but didn’t appear to be in much pain.  She appears to be tolerating this whole thing really well.  She actually looked pretty good tonight.

December 19- Sarah slept most of the day today.  She was moved out of the PICU into the infant ward.  When I got to her room, noticed she had been put back on oxygen and she was saturating above 90%.  That’s a normal oxygen level for most people, but not for Sarah.  With her heart problems, her average is closer to 82%.  She really doesn’t need to be above that according to her cardiologist.  So, I pulled it off and shut it off at the wall.  No need to pay for what isn’t required.  I had to explain to the nurse that she shouldn’t be saturating so high and that it was normal for her to be at a lower level.  Fortunately, it was the nurse that made the initial call rather than the doctor, so she had no problem leaving it off.  I stayed with Sarah in her new room most of the night.  She was pretty wound up the whole time I was there.  I don’t know if it was because of pain, or if she was just extra fidgety.  She didn’t act like she was in pain, she just wasn’t very comfortable I guess.

December 20- They tried to get blood from Sarah this morning, but after four attempts they gave up.  Either Sarah is an extra difficult case, or they just don’t have very good technicians.  My wife showed up soon after the attempts and was not happy when she got the report.  She is very sensitive to all the poking they attempt to do, so she went straight to Sarah’s cardiologist and had him cancel the order so that no more attempts would be made.  It worked.  Sarah’s neurosurgeon gave her a final checkup this afternoon and then released her.  Everything went really well and recovery was right on track.  Sarah is HOME and here to stay for a while.  We were really blessed that everything went so well with no complications.  It’s pretty amazing to me how fast she has bounced back from all these major surgeries, despite the problems that still exist.  She’s a pretty special girl and most certainly, she’s being watched over by her Heavenly Father.

The Beginning Part 4

October 23- We came to the hospital fasting on Sarah’s behalf.  We want this surgery to be successful and fasting is our way of showing the Lord that we have faith that the surgery will be successful.  The surgery started at 2:30 p.m.  It didn’t take too long and we were told that it went very well.  The ductus is now tied off.  There were no complications at all, unless you call a broken rib a complication.  They told us that was normal and that there really was no way to avoid it.  In order to avoid cracking the rib cage (cutting through the sternum like they do in a regular open-heart surgery), they just try to squeeze between a couple of ribs. Babies are so small, it’s almost impossible to do it without cracking or breaking a rib.  They heal quickly, or so they said.  The operating room was set up with all the equipment necessary to do a regular open-heart surgery. I guess they want to be prepared in case something goes wrong.  While she was in there, they put a second catheter into her neck (right side) as well as an arterial catheter cut into her left wrist.  We’re not really sure why they needed a second neck line since the one she already has on the left side seems to be working just fine.  The arterial line is needed to test blood gases and pressures.  She also has a chest tube to drain off any blood and other fluids as a result of the surgery.  Because the anesthesia has a tendency to slow down or stop breathing, they kept her on the ventilator (intubated) until she wakes up fully and is no longer under the effects of the anesthesia. 

  It’s easier on her too because she doesn’t have to work hard to breath.  They don’t expect her to wake up until tomorrow.  I’m grateful the surgery went well, but at the same time, I feel bad because I know she’s going to be in a lot of pain once she wakes up.  No baby should have to go through that.  Fortunately, she’ll never remember any of it in a month or two, or less if she’s lucky.

October 24- Sarah’s chest tube was no longer draining, so they removed it this morning.  Her red blood cell count was pretty low, so they gave her a blood transfusion.  They never said that she lost a lot of blood during the surgery, so I’m not sure why her count is so low.  With all the stories about HIV tainted blood that we’ve heard lately, I was concerned about her receiving blood that wasn’t donated by us.  They assured us that the blood used at that hospital in particular, is given by specific donors that must meet very specific criteria.  It does not come from random donors.  That made me feel a little better. 

They still don’t want her trying to breathe on her own, so the ventilator is still in.  I guess that also helps reduce some of the pain she would experience if she had to breathe on her own.  With a big ventilator tube down her throat, she was not going to be eating anything from a bottle, so she got her 8 cc of formula through the nose tube.  She’s very sensitive to touch and sound even though she’s still pretty groggy and not completely alert yet.  She seemed to be experiencing a lot of pain tonight while we visited.  She was given some morphine and that seemed to help.  It’s really hard for us to see her in so much pain. 

October 25- Although it’s supposed to last longer than a regular I.V. line, Sarah’s arterial line had to be removed from her wrist because it was starting to turn red.  They wanted to put it in her foot, but they couldn’t get it in.  I’m sure the effort was no fun for Sarah.  I’m glad we weren’t here to witness it.  She was wide awake and more alert today.  She only had to have morphine twice, which indicates that she’s either not in as much pain as before or that she’s tolerating it better.  She ate 15 cc by tube.  She’s definitely frustrated with the ventilator, but despite that, she looked a lot better tonight.  She did need another transfusion today.  That’s two transfusions in two days.  I hope that’s not a bad sign.  No one indicated that it was a problem, so we’re hoping that it’s par for the course.

October 26- Sarah was not tolerating her feedings well today.  Her feeding tube is going straight to her stomach and that seems to be where the problems are.  They decided that it would be better if they bypassed the stomach and went straight to the intestines.  Using barium and a fluoroscope, they guided the feeding tube to the small intestine.  Unfortunately, that doesn’t seem to be working any better.  I guess she’s just going to have to live with it for now.  She’s also been very frustrated having to have the ventilator down her throat.  We ask every day when they are going to pull it out.  The surgery was on Tuesday and now it’s Friday, so you would think that since she’s quite awake now, they could pull it out.  They really didn’t want to do it until Monday, but her nurse has been pushing to have it done quicker.  She’s a great nurse.  Maybe her efforts have finally paid off, because it looks like it may happen tomorrow.  Sarah was very fussy tonight.  Sucking on her binky calmed her down quite a bit.  If she could just get that ventilator out of her throat, she’d be just fine.

October 27- It finally happened this morning.  The ventilator tube was removed.  It was easy to see that Sarah was quite happy about it.  We were there when it happened and she handled it very well.  They still aren’t letting her eat very much and to make matters worse, none of the formula is getting to her stomach.  It’s all going straight to her intestine, so she never gets to feel as if she’s getting anything to eat.  I know she’s getting the nutrition, just not the benefit of feeling full or even having food in her stomach.  She acts really hungry all the time, which is also making her quite miserable, in my opinion.  She was pretty restless today and very hoarse.  You can hardly hear her cry.  It’s such a sad sound.  The hardest part is not being able to comfort her at all.  We really haven’t been allowed to hold her because of the ventilator.  Now that it’s out, we’re hoping that will change.  She still needs oxygen, but instead of the nose cannula, they have the oxygen box over her head.  Maybe tomorrow.  She really needs more than just a touch or stroke.

October 28- The oxygen box is gone and the nose cannula is in, so we got to hold Sarah all night.  They also removed the feeding tube, which means she gets to eat on her own now.  She still doesn’t get to eat too much yet, only 18 cc tonight.  She knocks that down in just a couple of minutes and of course, it’s not enough for her.  She wants more.  We’re hoping that they can up the amount quickly and that she’ll tolerate it well.  They detected an arrhythmia, which means her heart is beating irregularly, so they stopped giving her the digoxin she’s been on.  No need to have the heart beat stronger if it’s not beating regularly.  They think it’s just temporary.  She’s also getting her voice back.  She wasn’t as hoarse tonight.

October 29- The catheter they put in Sarah’s neck during surgery came out today.  The other one is still in.  They also took the nose cannula off.  She is now on room air.  She was up to 27 cc of formula and going up 3 cc every third feeding.  That’s still less than an ounce, but definitely an improvement.  Sarah was so good this afternoon, not fussy at all.  She even smiled a lot.  She has no idea how much that meant to us to see her happy and content after everything she’s had to go through so far.  I don’t know how much more she is going to have to go through, but for tonight, we experienced a bit of heaven.  We have all been truly blessed.

The resident doctor dropped by while we were there and said that her x-rays looked really good and that the surgery was an overwhelming success, despite the surgeon’s initial doubts.  He also made a pretty special comment; at least it was special to me.  He was very pleased with the progress Sarah was making and indicated that all the doctors involved were pleased.  He said that he really wished he could say that it was because of something he did, but he knew that it had nothing to do with him.  In the absence of not knowing how or why things were suddenly going so well, he said he was more than willing to take the credit, even though it was not his to take.  He was very humble about it.  I was very touched by his honesty and not taking credit for something that God in his mercy had done.  I don’t know if he is religious at all, but I clearly got the sense that he knew there was a higher power at work; a power that he didn’t seem to be able to explain, but acknowledged none the less.  I wanted to tell him that it was because of the Priesthood blessing she was given and the associated fasting that took place in her behalf.  That fact was confirmed to me by the Spirit when I heard his statement.  He left before I could gather my emotions and say anything.  I’m positive he sees a lot of miracles with many of the critical babies he deals with every day.  

October 30- No big changes today.  The nurses said that Sarah was cooing and talking this morning.  That’s the up side for the nurses and the down side for us.  Unfortunately, we can’t be with her all day.  We really can’t wait to get her home.  There is a blue aerosol can on the stand next to her bed and according to the nurse, she really likes looking at it.  We brought her a couple of stuffed animals to look at, which she did gaze at once in a while.  She was up to 42 cc (1.4 oz.) of formula tonight, but that wasn’t good enough for her.  She wants more.  She is one starved little girl.

October 31- Sarah was a real fuss budget tonight for some reason.  Since there are no more planned surgeries for a while, they took out her remaining neck catheter.  Maybe that’s why she’s so fussy.  She’s up to 60 cc (2 oz.) of formula and is taking every bit of it, quite quickly I might add.  She finally settled down some after we fed her.  Her blood oxygen levels have dropped a bit, so they had to put her back on oxygen.  They really want her to be as close to 90% saturation as possible.  Her need to be on oxygen doesn’t seem to be a concern, at least as far as getting her home.  They have no problem sending us home with oxygen.

November 1- Sarah was off oxygen for part of the day, but was back on again tonight.  She’s out of her bed and back in a crib.  They had her dressed in pajamas and she looked so cute.  They kept her feedings at 60 cc per feeding today for some reason.  They also put her back on digoxin for her heart and are trying to stabilize the dosage.  Her X-rays look really good and show that her heart is stable.  No heart failure at all.  We still haven’t heard any plans about when she might get to go home.  Hopefully soon.

November 2- Sarah was doing really well today and she looked really good too.  She’s still on oxygen, but that really doesn’t seem to be much of an issue anymore.  It would almost be strange if she weren’t on oxygen.  She was awake for an hour of our visit and really seemed to enjoy being talked to.  She’s still on a three hour feeding schedule, but they have moved her up to 90 cc (3 oz.) if she wants it.  She wanted it tonight.  Still no word on when she might get to come home.

November 3- We finally got some long awaited news this morning about Sarah’s release date.  They are really hoping to let her leave in two days, Monday the 5^th.  Sarah was hungry this morning and was allowed to take almost 4 oz.  By afternoon, the good news of this morning was being jeopardized, as always seems to be the case.  Sarah started a bad case of diarrhea.  They had to restrict her feedings to 65 cc.  They are culturing the stool to see if it’s some sort of infection.  This may affect her discharge on Monday.  She was really sleepy tonight.

November 4- Good news!  Sarah’s diarrhea was not quite as bad today and she’s still scheduled to come home tomorrow.  They increased her feeding limit slightly to 75 cc per feeding.  It’s not enough for her, but if it helps with the diarrhea, then that’s a good thing.  Sarah’s probably not okay with it though.  I know she wants more.  She was a very happy little girl today.  The nurse sat us down before we left and explained all about the medications she’d be going home on.  She also explained the oxygen usage and how we would keep the tanks coming.  We just need to call the medical supply place whenever we need a new tank and they’ll bring one out.

November 5- We had our first snow of the season today.  It wasn’t a big storm and it didn’t keep us from getting to the hospital.  Before they released her, they pulled the last two stitches from her left wrist where the arterial line had been.  They set up the oxygen so that she gets 0.25 liters per hour, then sent us home.  We’ve all been through a lot this past 8 weeks, but it’s been a great, though hard at times, learning experience.  We’ve had to have a lot of faith and pray harder than we’ve probably ever prayed.  I hope we learned what we were intended to learn.  I suspect that this is just the beginning of more to come, but hopefully this experience has helped prepare us better for those times.  We are so grateful and elated to finally have our little baby home where she belongs.

The Beginning Part 3

October 11- After a 10 day fast, Sarah finally got to start eating today.  For her first feeding, she got to eat a whopping 5 cc, but by the third feeding, she was up to 11 cc.  She knocked that one out in less than 2 minutes.  She seems to be enjoying the opportunity to eat again.  Hopefully her stomach and digestive tract will handle it well.  It’s been encouraging so far.

October 12- Sarah was up to 20 cc of formula tonight.  She took it very quickly.  Everything still looks good and she’s tolerating her formula really well.  Her great-grandparents visited her today.

October 13- Not much of a change today.  They are really bringing her up slowly.  She’s only up to 24 cc today.  She must be pretty hungry because it really doesn’t take her very long to get it down.  I know she’d take a lot more, but they want to make sure it doesn’t overload her intestines and cause a new NEC episode.

October 14- Sarah continues to make progress.  It’s not fast progress, but it is progress.  She drank 28 cc tonight and will go up to 32 cc at the next feeding.  She’ll have to stay at 32 cc for a while.  Unfortunately, she’s back in heart failure again.  So, the nose cannula is on again and she’s receiving oxygen to help her through it.  They upped her Lasix dose (diuretic) to try and clear it up.  I suppose we should be really concerned every time she goes into heart failure, but she’s been through it enough times already that it seems more like an annoyance rather than a serious situation.  They give her more medicine and it gets better.  It’s hard to take it seriously, even though it really is serious, I guess.

October 15- We didn’t learn anything major today.  Sarah had an ultrasound today, but the cardiology team didn’t report any results to anyone.  Maybe that means there was nothing to report, or that we won’t find out anything until tomorrow.  That’s the worst part about this whole ordeal – not always being kept informed.  Sarah is now eating 34 cc.  The next increase will be to 38 cc.  She lost 30 grams (4 oz.), which we were told is a good thing.  She’s now at 3270 grams (7 lbs. 3.35 oz.).

October 16- The Cardiologists decided that it was time to do a heart catheterization on Sarah.  It involves passing a thin flexible tube (catheter) into the right or left side of the heart.  The catheter is inserted into a vein or artery in the groin or arm.  They use x-rays to guide it to the heart.  It measures pressure and blood flow in and around the heart.  It is also used to inject a dye or contrast that can easily show up on x-ray.  That is used to determine the path the blood is taking as it is pumped through and from the heart.  They decided the catheterization is necessary because she’s just not responding the way she should with just an AV canal.  They scheduled it for tomorrow.  Sarah’s brother and sister visited today and helped me feed Sarah her 43 cc of formula.  I also gave Sarah a Priesthood blessing in preparation for tomorrow’s procedure.

October 17- Sarah went through the procedure without any problems.  She was in a pretty deep sleep when we got there.  She didn’t wake up enough to eat until after the shift change, which was just after 8:00 p.m.  Her formula allotment was up to 53 cc (1.8 oz.) and she ate it very well.  She’s tolerating it really well so far.  We got the initial results of the cath procedure tonight.

·         No high blood pressure in the lungs (good), just a lot of extra blood.

·         The ductus is open significantly and is mixing blood (not so good).

·         The superior and inferior vena cava (blue blood (oxygen depleted)) veins are draining into both the left and right atrium.  It should only be emptying into the right atrium.

·         The pulmonary vein (red blood from lungs) drains into both left and right atriums.  This was a surprise finding.  It should all empty into the left atrium.  This problem along with the vena cava returns will complicate any repair.

·         There is a small hole in the ventricular septum. It wasn’t of much concern.  They aren’t too difficult to fix (although it does often require open heart surgery), but they usually repair themselves when they are that small.

·         Only a single atrium.  It looks like two separate atriums, a left and a right, but there is no septum or wall between them.  That makes it a common atrium, meaning that the blue blood mixes with the red blood, lowering the overall oxygen content of the blood getting pumped out to the body.  The fact that the plumbing is apparently doubled up tends to indicate that she actually has two left atriums and no right atrium.  This is one of the symptoms of polysplenia syndrome (many spleens).  They didn’t actually look for multiple spleens, but the fact that she may have two left atriums means that she most likely does have multiple spleens.  That part doesn’t really matter though.  It would explain why the red blood from the lungs is draining into both the left and right atriums – two left atriums means two returns.  It doesn’t totally explain why the blue blood returns are draining into both atriums, unless that is also part of the polysplenia syndrome.  The cardiologist wasn’t really sure how or if all of this could be repaired.  Not only would a septum or wall need to be constructed between the two atriums to eliminate the blood mixing, but most of the atrial veins would have to somehow be rerouted to their normal positions.  He wasn’t sure if that was possible.

·         The aortic valve is leaky.  This is the valve that goes between the left ventricle and the aorta which carries the red blood to the body.  After the ventricle pumps, the valve should close and not allow blood in the aorta to go back into the ventricle.  The faulty valve, however, allows this to happen.  Normal pressure in the aorta is around 90/60.  In Sarah’s case, it’s more like 90/30.  This is a very serious problem and nothing can be done about it right now.  This defect is life threatening due to her size.  They didn’t say what could be done if she were bigger. 

We were reminded that these were just preliminary results and that further consultation amongst the Cardiology team would occur over the next few days.  They promised to keep us posted.  We knew that she had heart problems, but nothing like this even crossed our minds.  Apparently, it hadn’t crossed the doctor’s minds either, as they truly seemed surprised by some of the findings.  At this point, we really don’t know what to think about Sarah’s long term prognosis.  It really doesn’t sound too promising right now.  Since these are just preliminary results, maybe they’re wrong.  I hope they’re wrong.

October 18- We didn’t get to visit too long tonight.  Another cardiologist talked to us about yesterday’s procedure.  He believes that the only logical choice for now is to surgically tie off the PDA (open ductus) in order to stop the blood mixing.  He also believes that the aortic valve leak is only mild to moderate.  He thinks the initial reading was inaccurate, but only time would tell for sure.  He also thinks there’s a chance that the PDA surgery will help.  He’s also not convinced that the pulmonary (red blood from the lungs) drainage is draining into the right atrium.  He said that another catheterization will be required later on to verify it.  The PDA surgery will occur sometime next week.

Sarah had blood in one of her stool samples tonight, so they took x-rays and made further stool checks.  They couldn’t find anything wrong, but they’ll continue to watch her, just in case.  I hope she’s okay.  We really don’t need any more setbacks right now.

October 19- Sarah has been doing well all day.  No new NEC scares, but she’s still on oxygen.  She’s been eating about 60 cc (2 oz.) per feeding.  We tried to find out when her PDA surgery is scheduled for, but no one seems to know the answer.

October 20- Sarah was doing fine today.  She gained another 20 grams (0.7 oz.).  A KTVX, Channel 4 news team was doing a story on the Newborn Intensive Care Unit (NICU) today and they interviewed Sarah’s nurse while she was feeding Sarah.  They thought Sarah was cute.  We were told that they would let us know when the program would be aired.  There is no guarantee that they’ll use the footage they took of her, but her nurse said it was a pretty substantial interview and since they thought Sarah was so cute, she was convinced that she would make the cut.  We found out that her surgery is scheduled 3 days from now (Tuesday).  One of the Pediatric Intensive Care Unit (PICU) nurses showed us around the PICU and explained where Sarah will be following her surgery.  No more NICU after Tuesday.

October 21- My mother and father-in-law came to visit Sarah today.  Since they were here, I had my father-in-law help me give Sarah a Priesthood blessing for her surgery on Tuesday.  I can’t think of anyone I’d rather have help me give her a blessing.  He has a lot of faith, and that’s exactly what Sarah needs right now.  She was awake for quite a while tonight.  She’s been eating 60 cc at each feeding, which still doesn’t seem like very much to me.  But, she seems to be gaining weight with it and she’s not having any more bowel problems, so I guess it’s enough.  She’s still on oxygen, but she looks really good.

October 22- My mother came by to visit Sarah today.  She got to feed her half of her bottle.  Sarah has a hard time eating all 60 cc at each feeding.  She’s just been too tired.  We met with the anesthesiologist today and he explained the procedure as he understood it and explained the standard risks.  I also talked to the surgeon on the phone.  He’s not convinced the surgery will help her condition all that much.  That’s not exactly what I wanted to hear, but at least he was being honest.  What he fails to understand is that Sarah received a blessing by two worthy priesthood holders who called upon the Lord to have this surgery be successful.  There is an abundance of faith and prayers by family members and others in Sarah’s behalf, so how could it not help.  The surgeon is wrong.  It will help.  It’s on for tomorrow around noon.

The Beginning Part 2

September 23- Sarah was breathing faster today, but she didn’t require as much oxygen as she did yesterday.  They took more X-rays today and found that there were still some problems, although they didn’t elaborate.  They’ve scheduled another heart ultrasound for her tomorrow.  Now they’re thinking the ductus didn’t close.  Too many doctors with too many opinions.  She was too tired to eat more than 10 cc.  Most of the feedings were by tube today.

September 24- Sarah must have gotten plenty of sleep last night, because she was wide awake the whole time we were at the hospital.  She was hungry too.  She ate 35 cc all by herself from the bottle.  They take chest X-rays of her every morning.  Her heart and lungs look worse today. The ultrasound clearly showed that the ductus is still open.  No more guessing.  The doctors don’t know yet what they’re going to do next, if anything.  I don’t know if that’s good news or bad news.  Maybe they’ll know more tomorrow.  They did start her on Lasix, a diuretic that is used to reduce the fluid buildup in her body, specifically around the heart and lungs.

September 25- Sarah was moved to an isolation room today to make room for another baby.  Now she’s all by herself.  That’s kind of nice.  We have a lot more privacy.  There are a lot of really sick kids here.  They took her off the oxygen today.  That’s a good sign.  She’s eating up to 45 cc now so she can gain some weight.  They started her on Digoxin today.  It’s a medication used to help the heart pump better.  It’s in a liquid form, so she gets it from a dropper.  Still no word on what’s next.  I get the impression that they just want to observe her for a while to see what happens.  Maybe they’re hoping that she’ll just stabilize and they won’t have to do anything.  That would be nice.

September 26- One of the babies in the main room passed away during the night.  That was really sad news.  We’d met the parents a week ago, and they had a lot of hope for their child.  It was kind of a shock when we heard the news.  It made me realize just how blessed we really were, despite all of Sarah’s problems.  The death opened up a space in the main room, so Sarah was moved out of her isolation room back to the main room.  They put her back on oxygen again.  Today’s X-rays showed some improvement.  They’ve upped her formula to 50 cc and she’s been tolerating it well.  Her maternal grandmother came by to visit and was able to feed her at 3 pm.  Mom was able to feed her again at 6 pm.  She ate very well.  While changing her diaper tonight, I noticed a large lump on her lower back.  It was soft and squishy and about an inch and a half to two inches in diameter.  It wasn’t very tall, but it definitely wasn’t normal.  I asked the nurse if she knew anything about it.  She couldn’t find anything in the charts about it and had never really noticed it herself.  She said that she would make sure the doctors knew about it.  Still no word on future plans.  More waiting and watching.  It’s frustrating, but we just need to be patient.  We want her well, so if it means we need to wait, we’ll wait.

September 27- It was my oldest daughter’s birthday today, so I decided to stay home after work and spend some time with her and my son.  They haven’t seen much of us lately and they are really missing us. I figured Sarah wouldn’t mind, especially since it would give mom some alone time with her.  Not much has changed from yesterday.  Today’s X-ray looked about the same or maybe slightly better than yesterday’s.  No news on her back yet, or anything else for that matter.

September 28- Sarah was off the oxygen today and doing pretty well without it.  She still couldn’t eat everything on her own, so some of her feedings today were through the tube.  The X-rays of her lower back showed that she has an undeveloped lower spine.  We didn’t get any details about it, so we don’t know if that is significant or not.  It doesn’t really explain the lump either. We didn’t get to talk to the doctor about any of this. It was the nurse that filled us in.  She told us that a neurosurgeon has been requested to look at her.  That should happen sometime tomorrow.

September 29- It’s been two days now since Sarah has been off of oxygen.  Maybe that means her heart is doing better with the medication.  The nurse told us that she had eaten 300 cc out of 400 cc all by herself yesterday.  She was pretty tired today.  The thought was that when we take Sarah home, she may still need to be fed through the tube, so we had to learn how to put the naso-tube down her nose and into her stomach.  I didn’t think it was too hard.  Mom on the other hand still needs some practice.  We also started CPR training today.  It’s mandatory for parents with kids in the NICU.  It’s all in anticipation of taking her home soon.  Sarah’s neonatal doctor filled us in on her spinal problems.  Most of her sacrum is missing (sacral agenesis).  That means, she doesn’t have a tail bone.  A common side effect of this condition is the inability to walk normally, if at all.  They won’t really know if that will be a problem until she’s much older and starts to walk, if she can.  It can also affect the nerve bundles that exit the spine in that area.  The lump on her back turned out to be a lipoma, or fatty tissue tumor.  It’s not cancerous and is of no major concern.  Unfortunately, the lipoma got in the way when her spine was forming.  Apparently, the spine takes time to close up during development.  It kind of starts out like a stalk of celery, and then over time, it grows together to form a tube around the spinal cord.  During that process, part of the lipoma got caught inside as the spine continued to close up.  There is a hole in the lumbar area where the lipoma is.  The concern is that the portion of the lipoma that is caught in the spine is pressing against the spinal cord.  They call that spinal cord tethering, because the cord is stuck, or tethered, and can’t move up the spine as she grows.  That can cause serious nerve damage and major complications.  They will need to do a Magnetic Resonance Image (MRI) before they can verify that it really is tethered, but they are pretty certain that it is.  It sounds like she will require surgery on her spine.  Thankfully, it can wait for a month or two.  The other side effect of no sacrum and a tethered cord are bladder and rectum control, or lack thereof.  Again, it’s still too early to know if she will have problems, but the neurosurgeon is pretty confident that things won’t be normal.  I asked the doctor why this problem wasn’t discovered before and he said that it was most likely because her heart problems were of such a concern that no one was really worried about anything else.  If I hadn’t noticed the lump, it might have gone undiagnosed until it was too late.  I don’t blame the doctors or nurses.  They’ve been doing a great job.  I’m just grateful that my eyes were opened to the problem.  I don’t think it was an accident.  I know the Lord is watching out for our Sarah.

September 30- No real changes to speak of today.  Sarah is still off oxygen and doing pretty well without it.  She only ate 15 cc out of 50 cc while we were here.  Hopefully she eats more when we’re not here.  We finished up our CPR training today.  There wasn’t much to finish.  Now, we’re qualified to do CPR on Sarah if it becomes necessary.  We’ve done our part.  Now the hospital just needs to release her so we can take her home.

October 1- Got a call at 1:30 a.m. from the hospital.  That’s not really the way you want to be woken up.  A call at that time of the morning is never a good one.  The nurse reported that Sarah had blood in her stool and they needed permission to give her a spinal and bladder tap.  I’d never heard of a bladder tap before.  They had taken an X-ray and it looked very suspicious.  I gave permission, then struggled to sleep the rest of the night.  They took another X-ray later in the morning which verified that she had Necrotizing Enterocolitis or NEC for short.  NEC is primarily seen in premature babies, although it is not exclusive to them.  NEC is the inflammation and death of intestinal tissue that may involve just the lining of the intestine or the entire thickness of the intestine.  It shows up on X-rays as gas bubbles in the intestinal tissue.  In severe cases, the affected intestine has to be cut out, because it is literally dead.  We were aware that this would be a possibility, but since she had been eating for so long, we really thought we were past that.  Sarah’s older sister was premature and we learned all about this complication with her.  The doctor didn’t think it looked too severe yet.  He also thinks that her heart problems may have contributed to the problem.  They want to make sure that no excess gas gets into her bowels, because that could cause them to perforate (tear open), and that would be really bad news.  So, unfortunately for Sarah, it means that she can’t eat for the next 10 days.  She’ll also have to be on antibiotics for that period of time as well.  That means it will be at least another 10 days before we can take her home, assuming it doesn’t get worse and nothing else unexpected shows up.  On the bright side, everything else looks good.

October 2- Because Sarah won’t be eating for a while, they started her on a vitamin fortified IV which also included some fats.  It won’t fill her tummy, but her body won’t starve.  They also put in an Anderson tube, which is a stomach tube that is placed through the mouth.  It is attached to suction device that provides periodic suction.  They have to keep everything out of her stomach, including the gastric juices, so that nothing will pass through to the intestines.  This gives them a chance to rest and reduce any risk of gas buildup.  She slept the whole time we were there.  She’s still off oxygen and in general, doing pretty well.  Nothing has really changed since yesterday.

October 3- We were kind of surprised when we saw Sarah today with an IV in her neck.  They explained that the IV in her arm would have to be replaced every couple of days because the veins just don’t last that long before they collapse.  That’s not a problem when they use the neck.  It was the only way they could keep getting her IV solution to her easily.  My father came by to visit, so I took advantage of the situation to give Sarah another Priesthood blessing, specifically to heal up the NEC.  She was pretty fussy until we finally started holding and rocking her.  I always worry that if we aren’t careful, we’ll end up pulling the IV out.  It’s pretty taped up, so it would probably be difficult to do, but it still makes you extra cautious.  She looks pretty good.  The neck line really doesn’t seem to bother her.  It probably did when they put it in though.  She occasionally needs a breath of oxygen, but at least it’s not constant.

October 4- Not much change today.  Sarah has gained some weight, a whole 40 grams (1.4 oz).  It doesn’t seem all that significant until you remember that she’s not eating anything.  If she doesn’t lose it again, that will be good.  We rocked her for a while and she seemed to enjoy it. My mother came by to visit with her today.  Besides parents and siblings, grandparents are the only ones allowed to come and visit.  At least, that’s the policy.  I don’t know how strict they are on enforcing that.

October 5- Nothing new today.  It really is just a waiting game now.  The test for blood in Sarah’s stool was negative today.  Since she’s not eating, I’m not really sure how they are getting a stool sample.  They wouldn’t be coming on any kind of frequent basis, so I guess they aren’t going to be able to test it often.  But, no blood is a good sign.  Sarah’s other Grandma, as well as her Aunt, visited today.  It’s really nice to have family close by.  They have been tending the other kids for us when we come to the hospital.  They’ve been a tremendous support.

October 6- Blood test in the stool was negative again today.  The X-ray of her intestine also showed improvement.  Sarah did gain too much weight though.  I guess that means she needs to go on a diet.  Less than a month old and she already has to worry about dieting.  They really didn’t say what the solution was or how much she actually gained.  Her lung X-rays showed some congestion.  Her Lasix dose was upped to try and get rid of the excess fluids.  She seems to be doing really good.  She may be able to get her stomach tube out by tomorrow.  She was awake for our entire visit.

October 7- They removed the suction from her stomach tube.  The tube is still in, but now it’s just using gravitation to keep the stomach pumped out.  That’s a step in the right direction.  Her NEC is getting better.  No mention of the fluid buildup in her heart and lungs, so the Lasix must be doing its job.  She continues to do well.  She was awake again for our entire visit.  Her maternal grandparents visited again today and brought Sarah’s great grandmother along as well.  She’s had a lot of visitors this week. 

October 8- Sarah is still doing really well.  She had her MRI and Voiding Cysto-Urethrogram (VCUG) tests today.  The MRI was for her spine and the VCUG was for her bladder and kidney.  The VCUG test uses a catheter to fill the bladder with a contrasting agent.  X-rays are then taken to determine the size of the bladder and urethra as well as whether or not there is any reflux – a condition where urine from the bladder goes up to the kidneys.  We’ll know the results on the 10^th.  She was awake for most of our visit.  Only another day and a half of the drainage tube.

October 9- Sarah finally got the Anderson tube out of her stomach, a day earlier than we expected.  She’s been acting very hungry and sucking very hard.  If everything looks good tomorrow, she may be able to start eating again.  We’re very optimistic, but not surprised that she’s doing so well.  That’s the power of good doctors, good medication, and most importantly, the Priesthood.  She pretty much slept most of the time we were there tonight.  That’s okay though.  That probably keeps her mind off of how hungry she is. 

October 10- Sarah finished up all her antibiotics today.  Her blood test showed that her red blood cell count was down to 30.  It should be 45, so that’s a pretty significant drop.  They had to give her a blood transfusion to get her count back up.  This was to hopefully prevent a recurrence of NEC.  They didn’t say what could have caused this.  Normally it’s because of internal bleeding, so maybe it’s because of the bleeding in her intestine caused by the NEC.  That’s just my guess though.  She did look more white than pink.  We got to meet with all the doctors today.  The MRI showed that her spinal cord is definitely tethered and will require surgery whenever her heart is stable enough.  The VCUG test showed that there are possible bladder problems, but nothing serious.  They really didn’t go into any more details.  We will probably have to wait until she’s a little older before we learn too much more about that.  The great news is that they hope to discharge her in one week.  Finally, the end is in sight.  It was a very encouraging night.

The Beginning Part 1

Being a Type 1 diabetic, my mother was no stranger to high risk pregnancies. My older sister was born 7 weeks premature after my mother exhibited signs of blood poisoning (preeclampsia/toxemia). She spent 3 weeks in the Newborn Intensive Care Unit (NICU). My brother, on the other hand, was born more or less on time, without any complications. Although the hope was that my birth would be more similar to my brother’s, it didn't come as a total surprise when the doctor informed my mother at one of her weekly checkups, that she needed to deliver that afternoon, even though I would still be 5 weeks early. He was confident that I’d developed enough to be born without any significant lung problems. So, on September 11, 1990, I was born via C-Section at 2:03 pm at McKay-Dee Hospital in Ogden, Utah.

Rather than try to explain my birth experience (of which I don’t remember a thing), I've decided to provide a day-by-day account as recorded by my father. This will hopefully provide a better understanding of the ups and downs of the first weeks of my life. This is where my story really begins.

September 11 – The C-Section went flawlessly and a precious 6 lb. 12 oz., 19 inch girl was born at 2:03 pm. As usual, she was whisked away by the nurses to be cleaned up and checked out by a pediatrician. The pediatrician was on hand because she was early. He determined quickly that her lungs were not as developed as hoped and administered some surfactant to allow the lungs to work better until they fully developed over time. I noticed an unusual amount of activity around her and was concerned about all the commotion and rushing around. It wasn't long before the pediatrician informed me that she had a serious heart murmur that had him concerned. He had an ultrasound performed on her heart and found that her atrium was not looking the way that it should. He told me that Life Flight had been called to fly her to Primary Children’s Medical Center (PCMC) in Salt Lake. He told me that McKay-Dee Hospital didn't really have the capability to handle this type of condition. I could tell that he was very concerned. He made it clear to me that this was very serious and suggested that before Life Flight arrived, I should consider giving her a name and a blessing (a common LDS ceremony performed on infants by one or more Melchizedek Priesthood holders), because he really wasn't sure about her long-term prognosis. This all came as a total shock. We were prepared for her being born prematurely, but this was not at all what we were expecting. I frantically tried to locate my father-in-law, but was unsuccessful. I was able to locate my step-father, and he made it to the hospital in time to help me with the blessing. She was given the name Sarah, after her maternal great grandmother. We barely had time to finish the blessing before the flight nurse wheeled her off to the helicopter. Mom was still in recovery, so she missed a lot of what went on. I filled her in as best I could and suggested that I stay with her, but she encouraged me to drive to the hospital to be with Sarah.

It was a 40 minute drive to Primary’s and I was praying the whole time that Sarah would be okay. The hospital staff was pretty busy trying to get her stabilized. They put her on a respirator to raise her blood oxygen saturation which was low because of her slightly underdeveloped lungs. They started some testing on her, but they weren’t prepared to give me any information, just that she was stable and that I should go home and get some rest. They’d have more for me in the morning.

September 12 – I got to the hospital early and was directed to the NICU. I was briefed on the NICU procedures and after washing up and gowning, I was taken to Sarah. She was in an incubator. She no longer had the respirator attached, but the incubator was being fed with a 42% oxygen mix. Her blood oxygen level was still on the low side, which is why she needed the extra oxygen.  The resident doctor came by to update me on her condition. He explained that she indeed had a heart defect that was serious, but right now, it was not life threatening. They had performed a more extensive ultrasound and had found that she had a small hole in her ventricular wall/septum (separates the left and right ventricles (lower part of the heart)) and a much larger hole in her atrium (atrioventricular canal defect or AV canal). In fact, they weren't even sure she had an atrial septum (separates the left and right atriums (upper part of the heart)). This means that red blood (oxygen enriched) and blue blood (oxygen depleted) would mix, causing poorly oxygenated blood to flow throughout her body. That’s probably why her oxygen needs to be so high right now; that and her underdeveloped lungs. It wasn't clear yet how much the blood is mixing and whether or not something needed to be done about it. Apparently, it is not uncommon for holes in the heart to close up on their own. A cardiologist will be assigned to her and will most likely do further testing over the next few days.

September 13 – Didn't learn anything new today. Sarah appeared to be doing pretty good. They were able to lower her oxygen from 42% to 35%. That’s at least a step in the right direction. I was able to touch her and stroke her through the incubator, but I was not allowed to hold her. She needed to stay in the incubator so she could get the oxygen she needed. It’s a pretty helpless feeling.

September 14 - Mom was released from the hospital today. She was still a little sore and decided to wait until tomorrow to go and visit Sarah. They put a nasal cannula on Sarah so she could get her oxygen through that instead of pumping it straight into her incubator. They reduced the oxygen level to about 28%. Now that she doesn't have to stay in the incubator to get her oxygen, I was finally able to hold Sarah for the first time. It was a little awkward with all the tubes and wires still attached to her, but it was wonderful to finally get to hold my little girl. She was also allowed to start eating today. Up until now, she has been subsisting on IV fluids to keep her hydrated and fed. They inserted a feeding tube through her nose and were feeding her 8 cc of formula every three hours. It seems like she’s making some good progress. No news on her heart problems.

September 15 - Mom got to visit Sarah today and hold her for the first time. That was a pretty special moment. Except for everything she’s attached to, you’d never guess that there was anything wrong with her. Her feedings were increased to 17 cc per feeding. She is still being fed through the feeding tube. We’re not hearing much from the doctors, so we’re taking that as a good thing. Maybe Sarah will get to come home sooner than we thought. She really seems to be making good progress.

September 16 - Sarah graduated to a bottle today. The feeding tube was removed and she was able to take 40 cc per feeding from the bottle. Her respiration rate has also decreased significantly, which we were told was a good thing. The doctor is still concerned, however, because he thought she should have been off the oxygen by now. We’re cautiously optimistic that this is nothing major and that she’ll be off oxygen tomorrow. We need to be positive.

September 17 - Sarah’s respiration rate increased today. They thought that the bottle feedings may be interfering with her getting enough oxygen, so they went back to tube feeding her. They took some chest x-rays as well as another ultrasound. The x-rays showed that her heart was enlarged, tell-tale signs of congestive heart failure. That sounded pretty scary to us. The doctor explained that it just meant that the heart was surrounded by too much fluid, making it harder for the heart to pump effectively. They prescribed diuretics to try and reduce the fluid retention around the heart and lungs. The ultrasound showed that the ductus arteriosus or vessel that connects the aorta and pulmonary artery was still open (patent). The ductus arteriosus is normally open while the baby is in the womb, but closes soon after birth. When it remains open, oxygen-rich blood from the aorta and oxygen-poor blood from the pulmonary artery mix, causing a strain on the heart and increasing blood pressure in the lung arteries. This is a congenital heart defect (defect present at birth) that they call patent ductus arteriosus or PDA. Apparently, this is a fairly common defect. They believe that this is a contributor to her heart failure. We were disappointed with the set back, and obviously concerned. We know that the doctors here are the best, so we’re sure they’ll get this under control. We will just need to be patient and remain positive.

September 18 – We got to the hospital just in time for Sarah’s feeding. She’s still on the bottle and took 35 cc of formula for us. Not quite as much as a couple of days ago, but still a good amount. The doctor decided that he wanted to start Sarah on some medication that would close her open or patent ductus arteriosus. If it was going to close on its own, it should have closed by now. The next obvious step is medication. If that doesn't work, they might have to resort to surgery. I’m glad they aren’t jumping on the surgery bandwagon yet. If the medication works, it should only take about 48 hours to see the results. The only downside is that Sarah won’t get to eat while she’s on it. That’s a long time for a hungry baby. The IV fluids will keep her hydrated and give her the essentials she needs. It will be a long two days. She still needs to be on oxygen, but hopefully that won’t be for too much longer. Once this vessel closes, maybe she’ll be off.

September 19 – We had a nice surprise today. They moved Sarah out of her incubator and put her in a crib. They were also able to remove her oxygen. We didn't think that would happen for a few days still. Her nurse told us that she has been very fussy and hungry. I feel so bad for her, especially because she has no idea of why she has to go without food. Only one more day and she’ll be done with the medication. We tried to calm her with a binky, but she’s not a big fan. She spits it right out or just won’t take it at all. She is awfully fond of her fingers though. Once she gets those fingers in her mouth, she calms right down. They don’t stay in for long, but they’re convenient and she knows just how to get them in her mouth. It’s kind of cute. My dad came to visit her today while we were there. Visitors really aren't allowed in the NICU, but grandparents and siblings are an exception.

September 20 - Sarah finished up her last dose of medicine today.  They performed another ultrasound to see if the medication worked. The technician thinks the vessel closed a little, but not completely. I’m still optimistic. It may not have closed completely yet, but maybe it will keep closing. Besides, the technician isn't the final say. A doctor still needs to read the ultrasound before we know for sure. After a long two days, Sarah got to eat again at 10:00 pm. Her stomach must have shrunk a little because she only took 25 cc. Mom got the privilege of feeding her.

September 21 - Mom got to sponge bath Sarah and then feed her. She only ate 30 cc, but that was more than last night.  Sarah was a very content and happy baby today. I think she likes having real food in her tummy. Unfortunately, they had to put her back on oxygen. Her nurse informed us that the radiology doctor looked over the ultrasound and that the vessel did not close at all. That was disappointing news. I guess that means the next step is surgery.

September 22 – I prayed throughout the day today that the doctor’s analysis was wrong and that the vessel would still close on its own so that surgery wouldn't be necessary. I was quite encouraged when we went to visit and learned that Sarah’s breathing had slowed down and that her heart and lung x-rays looked much better today. Her neonatal doctor seems to think that the ductus may have closed. That was a prayer come true. Even better, the nurses heard rumors that she may be discharged next week. We left the hospital tonight quite elated. Everything is starting to look up.

My Purpose

Have you ever thought about what your purpose is here in this life?  Or felt like you have something specific that only you can do?  Ever since I was a little girl I have felt that I have a specific mission while on this earth.  Not only am I here to do my best and endure to the end so that I can live with my Heavenly Father again, but I am here to help people in a way that only I can.

I was born with multiple health problems that have made my life hard but at the same time have brought me so many blessings.  These health problems have brought trial after trial and have instilled in me the desire to help others, especially kids who have or are going through similar things. Over the years I feel like I have been able to help those who were struggling with a similar problem.  I also feel like I have been able to make connections with people a lot easier because we have gone through similar things.  These opportunities have brought me so much joy and I know that I have made a difference in the lives of these people and they have made a difference in mine.

I still have a deep desire to help others who are going through similar things that I have gone through or are currently going through.  I know that I haven't fulfilled my purpose yet and that there are so many more people that I need to help.  For a long time I have been trying to figure out how exactly to do this. The plans that I had for myself to accomplish this wasn't what my Heavenly Father had in mind for me, which has left me lost and wondering what it is that I'm supposed to do.  I have pondered over this matter and have come up with ideas and I would start them but in the end it just wasn't right and I would give up.  A few months ago my dad gave me a priesthood blessing (A priesthood blessing is a conferral of power over spiritual things.  In a priesthood blessing a servant of the Lord exercises the priesthood, as moved upon by the Holy Ghost, to call upon the powers of heaven for the benefit of the person being blessed. (lds.org)).  In this blessing I was told that I have been given unique experiences and that I will find a way to share them with many people.   This has been on my mind ever since.

For the last little while I have thought about creating a blog but wasn't sure if it was what I needed to do.  I have been praying to know what it is that my Heavenly Father wanted me to do.  The last couple of days I have felt like I needed to create this blog and share my story.  I have called my blog "Uniquely Mine" because I have been given unique experiences that have shaped me into who I am today.  I want to share my story and everything that I have been through, both the good and the bad. I want to share the lessons that I have learned and most of all I want to share my testimony of the restored gospel of Jesus Christ.  Without this I wouldn't be here today.  I hope that I can reach many people who are struggling with their own challenges.  I hope that my story will be able to help whoever is in need because that is why I have created this blog.