Halloween

This year it was hard to decide what to make Adi for Halloween. As you can see we decided to try a few different costumes. I really wanted to make her Boo from Monster's Inc because of the way she wears her pig tails. The frog was the next pick but found out it was supposed to be a hot Halloween and saw that after 10 mins she was sweating in it. Then came the idea of a fairy. By the end of the night she just needed clothes so we put her in her little black outfit Cami gave her for her birthday (Thanks Cam- Adi loved her outfit from you the best out of them all). What a fun day of dress up.





Look at the glow around Adi's head. She is a little angel fairy.

Oct 25- BYU game

It was a good weekend in the Whitaker home because BYU won. As many of you know Scott is quite the football fan. He has been having Adi watch football and basketball games with him at home since she was born and together we decided it was time to take her to her first game. She was a great fan—slept through the first half and then only cried out twice when the fans roared in unison. Here are some pics to show you what a cute fan she made.

Sept 25 - Shriners orthodics

We got new splints and shoes. So far she is doing great with them. While Adi was getting fitted for her splints there was a girl in a room across the hall from us, about 8 years old, getting fitted for her prostetic leg. The girl was so excited to be able to walk in her new leg that without knowing it she gave me a much needed lesson on gratitude.
Being at Primary Children's Hospital and at Shriners so many times this last year has made me more aware of how special and strong children are that have special disabilities and medical challenges. I can't help but be humbled by the knowledge that such a special little girl came to our little family.

Sept 21- Birthday Celebration Take 2

This time around was much better. Adi fell asleep while Kaelin and Cami blew out there candles and opened presents. When she woke up it took her a little while to like the cake but once she got started it took her a while to stop. =)

Sept 20th- Racing for Elenore

Racing for Elenore- Scott and his friend Andrew both qualified to race at Miller Motor sports complex for a brand new Mustang GT. The competition included 100 people in a go cart race. They had a qualifying heat and they took the top twelve times to race in the final. Both Andrew and Scott made it. It was fun watching them race. There was one guy that was just flying around the track and Scott and Andrew were trying to figure out what his secret was and they finally figured it out on the last heat of the finals but they were too far behind to make up the time. Before the winner was announced Scott and Andrew decided they would be ok with whatever place they got as long as it wasn’t 2nd or 12th. They got their wish and walked away without the car, but with some fun memories.

Sept 14th Happy B-Day!

Happy Birthday Adi!!! We decided to wait until Cami came up from SUU to celebrate their birthdays together with the family. We had a practice run. Adi, who has been sick with a stomach flu, ended up very crabby and cross wanting nothing to do with her cake.

Sept 13th- Birthday fun

Scott and I decided to take Adi to Chuck E Cheese for her birthday, where she could watch other kids (which is her favorite thing to do). We gave her a piece of the pizza crust and she held on to it and wouldn’t let go. We laughed… you’d never think this little girl had eating issues.=) It was fun watching her facial expressions as she experienced the fun of the place where a kid can be a kid.

Sept. 11th

Adi and I were on the freeway at 7:30am this morning headed up to Shriner’s to get her casts off. When we got up there we got right in to see Sonya at 9am and she took off the casts and let her soak her feet and play in warm soapy water. Adi was so cute to watch and wished I got it on camera. She had loved hitting her feet together with the casts because of the slight noise they’d make but once they came off she just looked like she didn’t know what to think about her real feet. Sonya loved the amount of progress she saw in one session of the casts that she decided we wouldn’t need to have a second round right away like we’d planned. They made soft removable casts for her to sleep in and then sent us down to get her feet molded for braces for her to walk in. She is a really patient child and the man who worked with us was impressed by how good natured she was during the whole procedure. We left Shriner’s at 10:45 and went directly to Timp hospital for a weight check. She is 15 lbs 8 oz which we are happy with considering the stomach flu she’s had for over a week.

Sept. 9th

I was thinking of writing quick summaries of what has gone on in the last 10 visits with specialists (neurologist, genetics, surgeon, Shriner’s, physical therapy, etc) but have realized I would always be playing catch up so instead I copied and pasted an email I sent to Amy Fish. Amy thanks for helping me realize that I needed to keep this short and sweet.

Things are finally looking up. I love Merlin, his nano water and Dr. Jim Kaiser who has all the best answers. The nano water has been what I attribute to her weight gain and looking so healthy. We are off seizure meds, teething, and finally having a chance to be semi normal. She has casts on her legs up to her knees to help the tendons around her ankles stretch and has caught some really bad stomach flu. She has given us a few scares where doctors have given us worst possible scenarios and I have sadly taken the bait. I am learning a lot and there has definitely been growth in my understanding of the medical field. Although I am glad it exists I know it does not always give you the best solution.
I am looking forward to next summer and Adi being able to play with all the kids. My hope is that she will quickly catch up to other kids her age now that she will not be in the hospital all the time.

I can not thank everyone enough for your love and support during this time. When I look at the stack of bills and just start making lists of all I have to do I sometimes freak out. I can feel the strength of your prayers as I find the patience to deal with issue after issue with the insurance companies. The dumbest thing I have done is get a secondary insurance policy. The headache it has caused is beyond anything I’d ever wish on my worst enemy.

Aug 15 - forklift

I was unloading some steel into a big metal recycle bin. We had the wooden crate lifted up with a forklift and we were in the crate unloading the metal. As I picked up the very last piece of metal, I guess I was off center of the forks and the crate tipped and I fell head first to the asphalt. The next thing I knew I was wheezing like the wind was knocked out of me and the guy with me was asking me if I was breathing and if I was okay. I climbed up into the chair of the forklift because my back was really hurting and I just wanted to sit down and catch my breath. The guy told me that I was just laying there for about 30 seconds and I was knocked out. As I thought back on what had happened I remembered a bunch of songs going through my head and it was like I was dreaming. It was really a weird feeling. My face and arm were really hurting as well. It turned out that the crate had landed across my arm and back stopping it from landing on my head. I got a CT scan and everything looked fine. It was just a mild concussion and some muscle strain in my back. It could have been much worse.

When Scott was getting the CAT scan and x-ray Adi was all smiles…. I guess she realized it was finally not her turn.

July 29th

14 days post surgery they placed a NG. Adi gagged at 30ccs an hour. We had to turn off the pump at least three times the first night. Dr. Rollins came in and told me to figure on staying another week until she was able to tolerate feeds. Val came up to stay the night so I could go to work. The next day when I got back the attending doctor came into the room to inform us we were being discharged. It is the Grandma touch that got us out of the hospital this time. Unfortunately, we had driven up in separate cars and Adi still didn’t look good enough to me to feel comfortable driving with her alone. I think I was just having flashbacks from leaving the Wednesday before surgery and having to come right back after she started with her seizures. I refused to leave until I felt Adi was looking better. I left the next morning, 7/31, with Adi still gagging and a prayer in my heart. Scott had bought me a mirror for the car so I could have an eye on Adi at all times. Talk about being glued to the mirror =).

July 17th night- July 18th

To get everyone up to speed- Adi had a blood transfusion through a peripheral IV line in her foot. We prayed that the line would last long enough to give her the blood she needed. The IV team had come in and placed the second line in her hand so that they could run her TPN at the same time and also hoped to be able to use that line to place dye in when they would place the PICC the next day. We didn’t have any other options for veins, all of them have been exhausted- everything worked out. A few minutes after the blood transfusion finished the vein failed. What a blessing… all we needed now was for the vein in her hand to survive the night. The next day the PICC was to be placed. Dr. Feola, was the radiologist who found that Adi’s stomach had herniated again on May 31st, placed about three of her tubes, two upper GIs, and now was going to place the PICC. I was nervous about her being given more drugs to sedate her body and that I couldn’t be at her side really annoyed me until I new it was Dr. Feola performing the procedure. The procedure was to take up to two hours… I left and got some food from the caf and was back in 15 mins. When I walked back to the hall where I would wait out the rest of the time I saw her cna with the crib in the room. She was done and I counted my blessings. I walked into the room and grabbed Adi. Doctor Feola looked at me and said “that went great.” Then he added that he felt like he was her personal radiologist. How many people have one of those.
The PICC made blood draws easy because there would be not more poking. Everyday she was being poked for blood so they could make up her TPN. The screaming and seeing her not feeling well really wore on me. I started being unable to watch. I would walk the halls and as I would come back and hear her crying I’d start crying. I became a big boob at watching my baby cry but finally the PICC was going to stop the crying.

July 17, 2008

This is Grandma Val making a little entry to Scott and Anna's blog. I will just let you know a little bit about what has happened today that I know about. When results from Adi's blood labs came back today her Hematicrit was low -- 25. Dr. Rollins came in and said that he wanted her to have a blood transfusion. He also wants to have PICC line put in. Adi has had so many IV's lately that she hardly has any good veins left. The PICC line can't be put in until tomorrow so the IV team came in and put in another IV. This is her 5th IV site since she came in on Tuesday. Adi has also had trouble keeping her oxygen saturation levels up today so she has been on blow-by oxygen today. Hopefully, with some additional blood she will be able to maintain those levels. Adi is getting some TPN, a nutritional supplement, through her IV and is still on morphine and Tylenol for pain. She has rested comfortably this afternoon while I have been here, especially after the trauma of getting another IV. This little girl has had to endure a lot of needles so far in her life and it never gets easier.

July 16, 2008

Well we got a bed again-  Cammie, the tech we had 3 hospital stays back, remembered that we had one when she was our tech the last time.  She had the bed in our room by midnight. It's all about the little blessings.  

The night before surgery was rough because Adi was restless and I am, although trying hard not to be, a little paranoid at her having other complications or seizures.  Then there was the feeding schedule-  from 2:45am to 5:45am she was to be off formula and on clear liquids.  At 5:45am all feeding stopped.  At that time there was no reason to fall asleep because we needed to be out of the house by 6:30 to be at Primary Children's by 7:15 for surgery at 8:45am.  I have to admit I was nervous about surgery.  I thought the second time around would be easier but it almost seemed harder.  I'd asked Scott to give her a father's blessing before we left the house- it was more for me to be able to have peace of mind and know that he could bless the surgeon's hands through her.  During the blessing Scott said that everything would be ok which brought an immediate peace.  I don't know how people go through life without the gospel and priesthood blessings.  

Everything went as scheduled.  As we went down the hall with the anesthesiologist, Dr. Furst, to the spot where we give our last kisses to Adi before surgery I didn't cry and Adi went with Dr Furst smiling.  Another blessing.  

Scott and I were both so tired but we just couldn't sleep in the waiting room.  We got updates every hour and the surgery took a total of 4 1/2 hours.  When the bed got to the room we were all just exhausted.  Adi had been grunting and squirmy so the nurse got orders to up the morphine to .03 mg/hr at a concentrate of 1 mg.  I am happy to report we all slept as well as possible for being in a hospital. =)   

 Adi continues to have a slight fever which the surgeon said was to be expected.   She will be without food for 5 days and everything from here on is just letting her body heal.  

I don't think we can thank you all enough for your love and prayers during this time.  I see prayers work as we receive all the little blessing and tender mercies throughout this process.  Thank you all!!!  

 

July 15, 2008

The surgery took a bit longer than they expected (4 1/2 hrs) and we just got up to our room so I apologize for the delay. Everything went well and Dr. Rollins was really pleased with the way things went. He couldn't tell what had caused the nissen to herniate again because all of the stitches in the diaphragm were still intact. He was able to put the stomach in the proper place again and he put in a patch this time to strengthen the diaphragm and hopefully prevent any further problems. He redid the nissen anyway and feels like she will have plenty of room for food and liquid to empty into her stomach as soon as she can eat again, which will probably be in 2-3 days. Thank you again for all of your prayers which sustain us each day.

Grandma’s email to family July 10th

Hello All,
I am sitting in the Primary Children's Hospital in room 4320, again, and thought I would update you and ask for your prayers in behalf of Adi. On Sunday, Scott and Anna brought Adi over to our house and described some gagging and retchingepisodes that Adi had been having on Saturday and Sunday. Often times with these episodes Adi would stop breathing and get a glazed-over look in her eyes. When I saw one of these episodes I agreed that it was time to take her to the hospital. It made her start sweating so much and just wiped her out. It didn't seem right. We talked to the ER staff about identifying through an x-ray whether something was amiss with her feeding tube which might be causing this attempt to vomit. Because of Adi's previous surgery for her hiatal hernia and the nissen wrap she is unable to vomit. Well, we were taken back to x-ray very quickly which was wonderful because the waiting room was packed. Of course the results of the x-ray showed that the feeding tube was in the correct place and wasn't the cause of this new behavior. Luckily, while we were in the ER she had a little episode when the attending physician was examining her. He said he was concerned and felt that she should be admitted and have some tests run to determine if she was having seizures. So, Monday, Tuesday, and Wednesday were spent doing tests: EEG, echocardiogram, and a GI emptying test. Everything came back normal. When she was admitted they had Anna stop nursing her so she was only getting feedings through her NJ tube. She didn't have any more gagging, retching episodes so the feeling was that maybe the milk from nursing was sitting in her esophagus too long and causing her body to try to up-chuck it. Anna was finally able to meet with the surgeon, Dr. Rollins and talk about Adi's upcoming repair surgery. Of course we kept hoping that all of this would be cause to schedule the surgery sooner. Not so. In fact, because Adi had been in the hospital the week before and had been diagnosed with Adenoe Virus, Dr. Rollins wanted another 'snot test" done to see if the virus was still present. Normally they would not put a child under anesthesia until 4-6 weeks after having that virus. Discouraging news -- the surgery might even be postponed.
Since all the tests had been run and Adi was doing okay, no more retching, Anna and Adi were discharged yesterday around 4:30. Adi slept on the ride home and Anna drove straight to see Scott at work. Scott looked in on Adi sitting in her car seat and saw that she was still sleeping. He went inside to finish up something and Anna was sitting in the car waiting for Scott to come back. She happened to look back and saw her car seat shaking. She came around to see her and saw her lips turning bluish, face very pale, eyes were glazed, and body having some convulsions. She screamed for Scott. He came and got her out of her car seat. She wasn't breathing and so he pulled out the NJ tube so she could have as much room as possible in her airway. Anna called 911 and while they were on the way Adi started breathing a little more and gradually got back to full breaths. By the time the paramedics saw her, she was smiling and interacting with them as if nothing happened. Scott and Anna decided it was best for Adi to ride up in the ambulance just in case something happened. She of course was fine on the way up and they got them right into an ER room and within 15 minutes she had another episode while the resident was in the room and she was able to see what happened and immediately thought it was a seizure.
Adi had 4 seizures last night. They decided to give her some Ativan to control the seizures and let her sleep. I went to the ER room and got it on what was happening after 9:30. Adi was admitted and put in room #4320 (the same room she had left at 4:30 in the afternoon) around 2:00. I went to go sleep in my car - sleep is not an accurate word. Anna and Scott slept in Adi's room. Again sleep is not an accurate word. The pull out chair butted up to the rocking chair with their heads at opposite ends and their legs fighting to share space - I guess there could have been some sleep.
This morning I came back to the room around 7:00. Adi had a very significant seizure at 8:30. The resident neurologist was right outside the door and was able to see the seizure. A technician arrived at 10:30 to set up an EEG. We wanted Adi to have a seizure during the EEG since the EEG they did on Monday came back normal. Originally Adi was scheduled for a routine EEG which would only last about 30 minutes, but the technician needed to go make a presentation and said that she would leave it on until the presentation was over -- about 2 hours. Well, even before the technician had finished letting us know what to document if she had a seizure, one started. Scott was able to get it on video as well. The seizure might have been the worst one she has had. What an answer to prayer to have the information documented that this team of neurologists needs to make a good diagnosis.
It is now 12:30 and we haven't seen anymore seizure activity. I would just like all of you to keep Adi, Scott and Anna in your prayers. This has been very scary for Anna and Scott. I hope that they will feel comforted and be able to get the rest they need and be in good health as they deal with what lays ahead for Adi, which right now is uncertain. We still need to resolve the upcoming surgery date and what effect these seizures will have on that.
Love,Valerie

June 26, 2008

We went in for our usual Thurs. weigh in and explained to Dr. Kendall she had had a fever since 9pm the night before.  She had slept over at Grandma’s and in taking her temp it was a 102 reading at 2am.  The fever never got below 99 with Tylenol.  Adi had had an ear infection for 2 weeks and amoxicillin and omnicef didn’t work to get rid of them.    Dr. Kendall asked if we should have a blood draw taken to check that the bacterial infection hadn’t gone to her blood.  We went home and at 4:30pm Adi started having very thick saliva and had a fever of 103.4 rectally.  After talking to Val for a minute on the phone I realized I needed to get to Dr. Kendall’s office before it closed.  When we got into a room her fever was 103.6.  Dr. Kendall told me she didn’t feel comfortable to let me go up to Primary Children’s by myself and that I needed someone to drive me.  Of course, Val without being asked called me to let me know she was on her way.  What a lifesaver!!!!  We were in the emergency room at 6pm.  The ER Dr ordered a blood draw and told us he wanted to test for meningitis with a lumbar puncture(LP).  He also wanted to do a snot test to check for other viruses.  The blood work came back normal and they were waiting for a blood culture they were growing at Timp.  They got ready for the Lumbar puncture and that was an awful procedure.  They had to hold Adi and pretty much bend her in half so they could get the needle in between the vertebrae.  She was screaming the whole time.  On his first try, he inserted the needle and blood came out.  He told us he must have nicked a blood vessel.  He tried again and the same thing happened.  He had to go get another needle and left Adi bent in half screaming for another 10 min.  He tried a third time and missed again.  At this point he said he was going to get another doctor to try.  The new doctor came in about 5 min and took 5 min to reposition Adi.  She then inserted the needle and got more blood.  I was getting pretty upset because it had almost been an hour and Adi had been screaming the whole time.  The doctors said that 99% of the time it only takes one try, but of course we were the one percent that has an awful experience.  The next step was to have an anesthesiologist try under fluoroscopy.  They couldn’t do it that night though because they missed so many times and the site was so swollen.  The test was taken the next day and the test came back negative for meningitis.  The doctors started her on rocephin 600mg through her IV to treat her ear infection and as a preventative treatment.  The rocephin was taken for three days along with rotating Tylenol and Motrin to bring down her fever.  She had a continuous fever of 101 until the 28^th when the snot test was finally ordered and she tested positive for adeno virus- which is a respiratory virus.   There wasn’t much more they could do except control her pain and try to keep the fever down.  It subsided the next day and we were discharged that day.

June 23, 2008

 Adi pulled out her tube at the luncheon for Grandma’s funeral.   We went up to the hospital that evening to have it re-placed.  The radiologist started putting the tube down her esophagus and all of the sudden Adi couldn’t make any noise.  She was trying to scream out but she couldn’t make a noise.  I instantly knew something was wrong and started asking if she had aspirated or what was happening.  They finally pulled the tube back out and then she was able to breath again.  She tried again and the same thing happened.  She had put the tube down her windpipe twice.  The third time she finally got it down the right tube and got it placed in her intestines.  It was pretty scary and Adi just kept choking and coughing for the next two hours.  It was the worst NJ placement we’ve had yet.   

May 30, 2008

Adi is still not gaining weight (13 lbs 0 oz) so at our biweekly visit with Dr. Kendall suggested it was time to have another NG tube placed.  The 31^st we took her to the office at 3:30pm and Dr Laurie Anderson was supposed to place the tube.  The only tube they had in the office was a 5, which was not big enough.  The Dr’s LPN was asked to go find the right size.  While she was gone I decided to ask if home health had been ordered for all the supplies we needed.  The Dr asked her RN to call Infusion Innovation to check if they had orders.  The RN left and came back to ask if I had their number, I told her I didn’t and she just needed to look it up on dexonline.com.  I mentioned where Infusion Innovations was located so she could enter that information.  Not having anything to do I followed her to the computer.  She spelled Infusion wrong and didn’t put in a city location so she got frustrated she hadn’t found the number and told the Dr.  She finally found the number as the LPN came back with another tube.  The tube was an ok size but it had a sleeve at the end bigger than Adi’s nose.  I asked if they could just add to the home health order a nurse to place the tube at home.  The Dr agreed.

As I was walking out of the office at 5:30pm the LPN came running after me saying she didn’t have the phone number to our home health company.  I got frustrated and told her not to worry about calling- if she faxed the order over I would call and coordinate my daughters care.  I told the girl at the front desk I wanted my Dr to call me. 

When I got home the home health company called and told me they wouldn’t be able to send out a RN on a Friday night.  Right as I got off the phone our pediatrician called and we discussed the situation and decided we needed to take her to Primary Children’s Hospital to have the right size tube placed.  I mentioned to Dr Kendall I felt inspired we needed to pursue getting Adi’s heart checked out.  She said we could go in the next day, (Sat., May 31) to have an EKG and chest x-ray taken.  When we got to Primary Children’s they took us back and Scott voiced our concern that she has only 12 lbs 12 oz and tried to explain to the ER Dr that we needed to check this out.  Dr Nelson had the nurse place the tube.  When the nurse checked placement he only waited to see bubbles and not stomach bile.  Then he did a swoosh test and claimed everything was ok.  Adi cried for 2 hours after placement which she had never done before.  When we got home she started chocking which was not normal.  After a minute on the pump the pump would beep indicating something was wrong and nothing would go into the tube. 

The next day when we got the chest x-ray, the tube was coiled and kinked in her esophagus.

We immediately headed up to Primary Children’s with an order to get the tube replaced and Scott insisted on doing an upper GI barium swallow at the same time to check the nissen.  Sure enough the nissen was too tight and we had finally found an answer to why Adi hadn’t been gaining weight.  Scott and I are so grateful for inspiration given from a Father in Heaven who hears our prayers.

A few days later we got a diagnosis from the EKG showing an abnormality- biventricular hypertrophy. They wanted us to meet with a cardiologist to do some further testing.

Newsletter May 1, 2008

          It’s that time again and of course we are full of new adventures and stories.  I’m sure most of you have heard what’s been going on with Adi lately, but some of you have not and we also have some new updates.  Here is the condensed version.  Around the middle of March Adi started getting fussier than she ever had before and she also started vomiting about every time she would eat.  She went from eating about 3 ounces a feeding to sometimes only ½ an ounce.  We were pretty concerned and started going to see the pediatrician and she had us try some hypoallergenic formulas and then she modified Anna’s diet again and nothing was working.  Adi was losing weight and just didn’t want to eat very much.  Finally one day Adi didn’t really eat anything and she was lethargic and seemed dehydrated.  Anna called the pediatrician again and she told us to go to the emergency entrance of Primary Children’s Hospital.  They admitted Adi because she was dehydrated and they wanted to do an upper GI test to see why she was vomiting so much. They did the test the next day and they found that Adi had a hiatal hernia.  About half of her stomach was pulled up through her diaphragm.  Because of the severity of the hernia, she had to have surgery to fix it.  She went in for surgery the next day.  The surgery was successful and the next couple days were pretty challenging because she wasn’t allowed to eat anything.  She did really well though and was a good little girl.  When she was finally allowed to eat again, she wouldn’t eat very much still so they did another upper GI test and found out that the esophagus was being constricted with the stomach wrap they did in the surgery so the milk she was eating wasn’t able to pass into her stomach.  That is when they put the first feeding tube in her.  She had that for a few days and then she pulled it out.  She wasn’t gaining weight yet so they had to put another tube in and they kept us at the hospital so they could make sure she was gaining weight.  It was 16 days before Adi was finally discharged from the hospital.  We were very excited to finally be home.  She had done so well during her last couple days in the hospital and we thought she would do even better coming home.  But that was not the case.  She got pretty fussy again and she didn’t want to eat very much.  She had a lot of gas pains at night and that kept her from sleeping very well for a week or so.  She pulled out her second feeding tube last week and we thought she would have to get another one put in because she still wasn’t eating enough to gain much weight.  She had gained a little weight though so they didn’t put a tube in just yet.  She had an appointment with the surgeon a couple days ago and he said we could start her on puree foods again and that she looked good.  We are hoping that this helps her gain more weight quickly.  It has been challenging at times but we have had a love of help and support and more than anything, we have been blessed by all of your prayers.  Adi is such a sweet little girl and we are privileged to have her in our family.  Since the surgery, she has been more loose and relaxed than ever before so we are very optimistic that as she continues to recover she will gain more use of all her muscles.  Well, I feel like I have gone on and on so I’m going to wrap it up.  Not much else has been happening.  We are just totally consumed with getting Adi healthy and happy.  We love all of you and thank you again for your prayers and love and support.  

Sept 20, 2007

Sept 20

We just wanted to let you all know that Adi was released from the hospital yesterday. She passed the last couple tests she had and they said everything looks great. We are going to do some physical therapy and continue to monitor how things go with her development and we'll have a follow up in about 4 months. Thank you again for all your love and support and prayers. We really felt strengthened by them. It is good to be home and have Adi with us all the time. We'll let you know any changes as they happen. We love all of you. 
The Whitakers

Sept 18, 2007

Sept 18, 2007

Well hello everybody. I should have started this when we first got here, but we were a little pre-occupied so I am starting it now. This will be a long post because I have a lot to get down in writing, so feel free to skip as much as you want. Many of you know a lot of the details anyway, but for those that don't, here goes. Anna started contracting fairly regularly around 2:30pm on Thursday, Sept. 13th. By 6:30pm the contractions were 7 min. apart for 30 seconds. We went out to dinner to keep her mind off of it and that worked well. We continued a fairly normal evening and got to bed about 12:30 am. A couple hours later Anna woke up with contractions about a minute long and 5 min. apart. She was like that for an hour before she finally woke me up and we continued to time and track the contractions. By about 4:30am she felt like it was time to go to the hospital. They got her right into a room and were monitoring her to see if they would admit her or if they would send us back home. At this point she had dilated to a 3 and was 80% effaced. We obviously wanted to stay there and have this baby so we were hoping they would let us stay. They were trying to get a certain reading on the baby before they would let Anna get up and walk around and see if she was still progressing on her own. They weren't getting the reading they wanted and had tried moving Anna to some different positions and after almost an hour and a half (6:30am), Anna's water broke. We were so excited because we knew they couldn't send us home. They got her started on an IV a little while later and they checked her again but she was still the same. Her contractions had actually gotten more intense but less frequent so they wanted to start her on pitocin. At this point Anna felt like she wanted an Epidural. So they got the Epidural in and started the pitocin and Anna's blood pressure dropped significantly and the baby's heart rate dropped as well. They pumped Anna full of fluids and she stabilized after the third bag. They then tried the pitocin again and the baby's HR decreased again so they turned it off. They tried two more times with lower dosages and Anna in different positions and finally the baby's HR stayed in an acceptable range. They increased the pitocin after 30 min. and Anna's contractions increased in intensity and frequency to the point that she should have continued dilating at the normal rate. They checked her again after an hour of so(3:30pm) and she hadn't progressed at all. At that point we had come to grips with the fact that this baby might need to come out cesarean so we were okay when the doctor told us that things just weren't moving forward and the baby was trying to tell us something. So in the doctor’s words we went to have a "birthday party." I watched the surgery and feel extremely sorry for everyone that has gone through a c-section. It is not a gentle process and I will understand if Anna is sore for the next few months. The baby was born around 4:37pm on the 14th which is also my sister Cami's birthday. We had decided that if it was a little girl born on the 14th, we would name her Adilade Camille Whitaker. I went and watched as the cleaned Adi and then took her so Anna could see her. At that point, the doctor informed us they found a cyst the size of a peach on Anna's right ovary. They were able to cut it out and again in the doctor’s words we got the "2 for 1 special" that day. I went with Adi to the nursery while they finished the surgery. Everything looked great at that point. Adi's blood sugar was low, but after her first feeding, it came right back up. We had her with us the rest of the night and everything was great. We didn't know that the next few hours would change things dramatically. At 3:40am on Sat, the nurse came in with a pediatrician and woke us up with some bad news. They told us that she started displaying some odd behavior over the previous couple of hours. I guess there is a limit on the number of words per post, so I will just break it up into sections. Okay, so she was screaming out in pain whenever the nurse would try to move her or change her shirt or anything like that. That led her to check some other things and she noticed her breathing very rapidly. She also was very stiff in her arms and legs and hands and feet. Something was visibly wrong. The nurse called and got the pediatrician and that's when they came to talk to us. They wanted to run some tests and get an IV into her umbilical cord. He came back at 6am and said they had found that her calcium level was low and they had given her some through the IV and she was responding well. Her breathing had slowed and that helped regulate her ph levels and get them in balance. She was breathing with an oxygen hood so that she didn't have to work so hard. He also said that they had taken some x-rays and done an ultrasound and they thought there was a possibility of some hemorrhaging in her brain. They wanted to transfer her up to Primary Children’s Hospital so they could do further testing and have the specialists here work with her. He said they wanted her to have a CT scan and a spinal tap and all kinds of things done. We basically felt like we had the rug pulled out from under us. My initial response was anger and fear. Anna seemed to be taking it better than I, but I know it was equally hard for her. It took me a little while to pull myself together, but after some pondering and praying and reading, I was finally able to turn things over to the Lord and trust what was happening. Anna felt the same. Before they transported her my dad and I had the opportunity to give her a blessing. She was still under the oxygen hood at that time. The blessing went well and we all felt better afterwards. By the time they left for Primary Children’s hospital, she was breathing on her own. I followed her up here and soon after she got here I spoke with Dr. Null, her neonatologist. He had reviewed the x-rays and ultrasound from Timpanogos hospital and said there was no bleeding in the brain. That was a huge relief. They were going to run some blood tests and look at her electrolytes etc.. and then decide if she needed an MRI. It was very re-assuring talking with the nurses up here. I had thought I would be looking through a window at Adi the whole time and that I would get to go see her for a minute every once in a while. That turned out to be completely the opposite of what they do. I was very involved in the communication from the start and could be right there with her for as long as I wanted. The nurses also wanted us to ask as many questions as possible and I sure did. The first rounds of tests came back normal so they said they would probably do an MRI the next day to see if it was something neurological. Anna was released a day early from the hospital so she came up Sunday afternoon. They got the MRI ordered and done that afternoon and the preliminary results looked normal. They wanted the Neurologist to take a look and see if he could see anything that they missed so he took a look Monday morning and said everything looked fine. His whole team came to talk with us later that day and explained that they didn’t really know what was causing the contractures, but they wanted the geneticist to take a look as well.

The Physical Therapist also came by to do an evaluation of her joints and muscles. She tested all of her reflexes and there are a few of them that she doesn't do, but she does most of them. Her hands and toes had loosened up considerably by this time and they continue to get better each day. The PT had just a couple of concerns from what she saw but overall Adi did really well. The PT came again today and met with my dad and showed us all some exercises we can do to help her loosen up those muscles. Then the Geneticist came and looked her over and said everything looks good that he saw. He didn't want to do any further tests at this time and expects her to develop normally and on schedule and if we see some signs of slow development, then they may do some chromosome testing etc... So after everything that has been done, there is nothing that stands out as a reason of why things have happened the way they have. They mentioned Arthrogryposis as a possible diagnosis because that means multiple contractures, but she doesn't display any of the other usual symptoms so they are not really eager to say that that's what it is. Everyone is saying that we should do the PT and work with her for a few months and our pediatrician will be able to monitor her progress and we'll see how she responds. If everything goes well the rest of this day, they said they would let us all go home tomorrow! We are so excited to take her home with us even if we don't know exactly what is going on or what caused her contractures. We have really felt so blessed as this process has unfolded and have felt the strength and help from all of your prayers. We feel like we have had a series of little miracles along the way and expect more to follow as she grows older. We certainly feel grateful that Heavenly Father knows much more about this than we do and we know that he will continue to comfort and strengthen us for what lies ahead. It also makes us so much more grateful for every little thing that goes well. We definitely took for granted the whole birthing process and the miracle it is each time a baby is born. We sincerely thank you all for your visits, calls, prayers, and everything else you have done for us over the last few days. We will let you all know if anything else happens and will keep you posted on the continued progress of our little Adi. Love you all, Scott and Anna and Adilade Whitaker