Surgery #2

After having a HIDA scan, an upper GI, and barium swallow test the following was determined:

HIDA scan showed no bile flowing so there is an obstruction but they cannot confirm biliary atresia or other causes without doing an interoperative procedure to explore what is there.

The Upper GI showed that Harrison did have malrotated guts which requires surgery.

The Barium Swallow Test showed that Harrison doesn't aspirate (get food into his lungs) when he eats, but that he does have a poor suck and small swallow. This is probably due to low muscle tone and that fact that his heart condition makes it so much harder to do anything.

So the plan to find answers and resolve issues is to do the following in one surgery.

1st- They will repair the malrotated intestines and remove his appendix to prevent drs from misdiagnosing later in life due to the appendix being on the wrong side of the body.

2nd- Through the same opening they will peform a liver biopsy to send to the lab to help diagnose the cause of the liver issues.

3rd- Through the same opening they will do a cholangiogram where they will inject die into the gallbladder and watch it flow. If it doesn't go anywhere or stops it will confirm biliary atresia.

4th- They will insert a feeding tube into Harrison's stomach. Due to his difficulty feeding and a future of several major surgeries ahead, he needs to get bigger and stronger so this will allow for him to receive his proper caloric intake without him having to burn so many calories trying to eat. He can still eat by mouth to continuing strengthening those muscles but it won't be his only way to receive his nourishment.

All of the procedures are being done at once so that Harrison does not have to go through so many different procedures.

Considering the fact that Harrison has Cat Eye Syndrome, polysplenia, TAPVR, and malrotated guts, the signs are all pointing to biliary atresia. If this is the case..Harrison will undergo another surgery the following day called a KASAI procedure where doctors will try to create a way for bile to flow. This procedure is only temporary and Harrison will need a liver transplant at some point. It could be shortly afterwards if the procedure fails or even if it works, or it could be years after if the procedure works. There is no way to know for sure. Harrison's other issues may also complicate the procedure and its results. The KASAI is not 100% successful.

But with all that being said God has a plan for him and neither the doctors or us can know the answers ahead of time. I have a peace about all of this at this time. Whether it is a calm before the storm, or God's way of letting me know it will all be ok I am assured that God's hand is in it all. I pray that HE hears the desires of my heart.

Please pray for a surgery that is successful and uncomplicated. Also if it be God's will that Harrison will not have biliary atresia and that his liver issues can be resolved with ease. Please pray for the surgeons and all those involved in Harrison's care.

Praise- Emily got to visit Harrison for the 1st time through the help of some people at Levine Children's Hospital. For the continuous love and support shown to our family by friends, family, and even those who do not know us.

Week 3- Trying to find the faith of Job

Oh God! I come to you in desperation, heart aching, for my son Harrison. I pray that if it be your will that his precious life be spared of the diagnosis in which the doctors are saying. Lord I am crumbling, falling apart, and dying on the inside. I need the strength to carry on, and I need the faith and energy that only you can provide. I praise you for the beautiful child that he his, and I know that he is yours and that you have given him to us to love and raise in your likeness. But God, I want him to grow and be healthy..if it is your will please bless him with this opportunity. Let his little body be a testament of your power..In your name I pray..
Lisa

Week 3 has brought the tidal wave of all decades. The week we were told we would be bringing him home is the same week we learned he may be fighting for his life.

Liver- After feeding for several days, doctors noted that Harrison's stools were not the consistency or color they should be. His lab results showed elevated bilirubin and liver enzymes. A ultrasound of his liver was done and on Christmas Eve we were informed that further testing will be needed to rule out biliary atresia. Biliary atresia is not curable and is a liver disease. It requires a surgery pretty quickly in an infant's life and the surgery only works in about 50-80% of patients. If it is successful, at some point a liver transplant will be needed. 50% of infants who have had this surgery have had a liver transplant by the age of 2. Then you deal with the prognosis of a liver transplant. In Harrison's case, his prognosis with the initial procedure is considered not great due to the fact he has other anomalies such as the heart defect and polysplenia. He will be undergoing a HIDA scan to be followed by liver biopsy and an interoperative procedure to diagnose or rule out Biliary Atresia. He also has what appears to be 2 cysts on the biliary tree. These can be choledochal cysts or something else but choledochal cysts can occur with biliary atresia. In addition, another test has to be performed to look at malrotation of the gut which can also occur in these cases. Please pray that test results will reveal exactly what the doctors need to see.

As for the other areas, it all seems so minor at this point. Nothing has really changed other than he will be at full feeds at noon today. Praise God! Please pray that he will get bigger and stronger.

Prayer- Pray that God's will be done but also pray for a miracle. Pray for strength for Jamie and I as we face the road ahead. Pray for Emily as she tries to understand it all. Pray for wisdom and knowledge of all the doctors involved.

Praise- For love and support of family and friends. It is a reminder that we will make it and get through it.

This is the hardest thing I have ever had to write. My mind is in turmoil, my heart is in pieces, and my stomach is in knots. Christmas has been a blur, and happiness seems a million miles away. Yet I feel selfish to wish for anything better for myself while my child's body struggles to maintain life itself. Love is powerful and I am searching for healing powers of God's love as I give all that is in me to my family and son.

2nd Week of Life

Week 2 has brought about many great blessings from God!
Cardiac News- Cardiologists determined that the PDA had closed enough that they felt it was safe to do Harrison's open heart surgery at around 3-6 months. Praise God! They would like for him to be a little bigger to give him a better post operative prognosis. This means he can come home before surgery. It also means he could finally start eating by mouth. Hallelujah.

Spinal Cord- Finally met the Neurosurgeon who was not very helpful in answering my questions on the possible tethered spinal cord. He claims he is pretty sure Harrison has a tethered spinal cord but an MRI will be needed when he is bigger to confirm. He says that I have enough to be concerned with without adding this to the mix. I figure there is a reason why he feels I know now what I need to know so I am trusting in God that this too has a purpose.

Feeding-For the first time since he was born Harrison is allowed to be fed my breast milk. They started him out at 9ml (30ml is equal to 1oz). They wanted to see how he would eat. Cardiac babies often struggle with feeding due to the fact that is an exhausting feat. So they said that Harrison needs to be able to eat 2oz and keep it down before he can go home. Harrison did well with his first feeds and the Cardiologist was surprised and so was the neonatologist. So they decided to increase his feeds by 3ml every 3 feedings. (He gets fed every 3 hrs). Having fed Harrison, I was concerned that this might be too fast. Watching him eat is sometimes hard. He works so hard to get it down that when he is finished he is exhausted and often sleeps at the end of the feeding. Starting at only 9ml and knowing you have to get to 60ml before he can go home seemed daunting and almost impossible. I have prayed every night that his feedings go well. If he doesn't get it all down in 30min that have to feed him by inserting a gastric tube. I really didn't want him to have to do this. Well, 4 days after his feedings have started we are now up to 1oz (30ml). God has answered my prayers. We are 1/2 way there. Every time they increase his amount, I am worried, but he has proven me wrong every time. He has done it and without a gastric tube. I can only pray that this will continue.

Stats- Harrison's vitals (oxygen, respirations, and heart rate) have been good since birth until Saturday. He was DESATing (oxygen levels dropping) more in a couple of hours than he had in his entire 12 days of life. I mentioned this to the nurse who said she would ask the Dr to come take a look. Dr came immediately and ordered a chest x-ray which showed some haziness (fluid). So she ordered that his diuretic be increased since he was retaining fluid. His heart condition causes his body to retain fluid. We left to come home and I was worried, but when we called to check his progress, he was no longer DESATing and his levels were returning to normal. The meds seem to be working..Praise God for taking care of my little man.

Colostomy- Seems to be doing well..except his little bag keeps leaking and his skin is getting raw from the constant reapplication of the adhesive. :( Hopefully we will get a good one to stick.

Eyes- Opthomologist returned to check his eyes undialated for coloboma. She said she did not see any coloboma of the iris and has declared him coloboma free. Praise God for another answered prayer.

Highlight of the week- Today Jamie and I went to visit Harrison and we got there just in time for his feeding. He did well and was very alert. He was looking around and wide awake. We laid him in his bed to watch and play with him. When I picked up a stuffed mouse that was given to him, I held it out in front of him and wiggled it playing with him. He was watching it intently and reached up to grab it. It was so precious! It was a fantastic reminder of God's little miracles in such a beautiful and blessed baby. Jamie and I just looked and each other and smiled.

Please pray for Harrison to continue to grow stronger and do well with his feedings. Also pray for the doctors and nurses who handle his care. Pray for the wisdom and knowledge to continue with his care. Also pray for my other baby Emily. She has been battling on and off again illnesses for the past couple of months. She is such a beautiful little girl with a great and loving heart. She has not been able to see Harrison due to hospital restrictions and she is excited for him to come home. Pray that God will give her the strength to fight off these illnesses for good.

Praise- Praise for the blessings and great news we have received this week. Praise for the wonderful church members who have provided meals for my family. These have been wonderful and such a blessing. Praise for friends and family who have come to visit, call, send cards,emails, etc. They warm our hearts. Praise for my mother who has been my chauffeur, my bedside buddy, my back up baby sitter when Emily is sick, my partner in prayer, and my second brain when talking to doctors. She is wonderful and I cant express my gratitude or love for her in words.

Cardiac News

Well today began interestingly enough. I started not feeling well yesterday afternoon. I had body and muscle aches and began to worry that I might be getting sick..I immediately began crying at the thought of being banned from seeing Harrison. After getting home, I took my temperature and was running a low grade fever. My stomach turned at the thought. Being only a week out from delivery I called the 24 line of my dr. They were concerned due to the list of symptoms I was having and I was instructed to call back if my temp went above 100. I was at 99.6. I was also scheduled for an appt at 9am today. The whole way over I felt awful. I was checking my temp and it was all over the place but I even got a reading of 100.8 and of course I cried just knowing they were going to tell me I couldn't go see Harrison. When I arrive, the sign on the door instructs me that I have to knock on the back door since I have a fever and aches. So the nurse makes me wait out in the hall at the elevators and then returns and makes me wear a mask through the office. Even when she put me in the room, she told me I had to keep it on..Dr came in and told me I didn't have to wear it that my temp was only 99..YAY! She checks out several areas of concern and pretty much diagnoses me with.."You have a lot going on, your body is trying to heal from delivery, and your body is worn out." I get a couple of prescriptions and was sent on my merry way..I was so happy that I could go and see my baby I just cried. Thank you God!

Today was the day of the repeat echo cardiogram to see if his PDA closed with the second round of meds..He was also scheduled for a CT scan of the heart.

Well..the echo revealed that the PDA is a little smaller but not closed. So this changes the course of plans.

CT scan was done and the cardiologist said they will meet in the morning to discuss the results and look at Harrison's case. We should have a better idea of when and where the heart surgery will take place. Based on the collection of information I have heard, I am assuming it will sooner rather than later due to the open PDA.

Otherwise, Harrison looks good..he has lost a good bit of weight due to not being fed other than through an IV. He was born at 7lbs 6oz but weighed 6lbs 12 oz yesterday. After stopping the diuretic, he weighed 6lbs 15oz today.

Please continue praying for my little man..Pray that God will give the doctor's wisdom in how to best care for Harrison's heart defect.

Harrison's 1 Week Birthday!

Well today Harrison celebrated his 1 Week Birthday! As his gift..he was able to wear clothes for the 1st time...YAY! He looked as precious as ever..even though the 0-3 month clothes swallowed up his little 6lb body. (He has lost weight the past couple of days)

The past few days have revealed many test results which have left me in awe of the power of God. When I was pregnant, I truly felt that God's plan for Harrison would not be revealed until he was born. I had a strong feeling that when Harrison was born that he would reveal to the world the true powers and greatness of our God. And that is understatement for what has occurred that past couple of days.

Eyes- The opthomologist came and examined his eyes and said that all the major structures (including the pupil which is where the supposed coloboma might be) looked normal and in tact..No colobomas to the structures of the eye that might cause vision problems. HALLELUJAH! She will return on Sunday to examine his eyes undialated to make sure there is no coloboma of the iris..She suspects she will find nothing..Please pray..

Heart- The follow up echo to check to see if the PDA has closed revealed it was smaller but still not closed. Cardiologists agreed to do another round of the drug to close it and a follow up echo will be done on Wednesday. The cardiologist says that in term babies that if is hasn't closed up it usually doesn't but they are trying anyways..The neonatologist says that often times the 2nd dose does close the PDA..Conflicting views..but I believe God has the answers not man. :)

Tethered Cord- The head neurosurgeon came to evaluate Harrison and said his movement looked great and there was not great concern at the time. He wants to do a follow up at a later date (probably a MRI) but did not even list a date for that to be done..Praise God for my baby's great movement that is strengthened by the ONE above.

Bladder- Harrison was showing signs of producing more urine on his own and he had very little residual when being cathed. The drs ordered that his cathing be reduced and that the urologist be contacted to see if the cathing should be continued. Urologist ordered that all cathing be stopped due to the great urine output..Thank you Lord for my little man being able to do this on his own.

Cranial Ultrasound- Revealed normal results..no further testing required of his head and brain at this time.. I thank God for such great news.

overall stats- Harrison has been losing weight mostly because he is allowed nothing by mouth since birth. He is fed intravenously and it is monitored closely. He is also on a diuretic to keep fluids out of his lungs. His heart rate and oxygen levels have been good and his respirations vary, but they are expected to due to the heart defect.

The only test at this time that is pending is the CT scan of the heart..it should take place some time this week. Once this and the follow up echo have been completed we should have a better picture of where we are headed with this surgery.

Please pray that God will continue to provide Harrison with strength as we prepare for this next step..Also pray that God will be with his doctors as they continue to monitor him..and of course pray for our family as the holidays approach..It is difficult to have a baby in the hospital and another at home..We are often torn..but I also remind myself how blessed I am to have my daughter in my life and I try to cherish each moment.

Praise God for such wonderful news we have received and for the family and friends who have been so generous and kind. Praise God for my mom who has sat with me at Harrison's bedside as all of this flood of information is revealed and for caring for me and my family daily. And of course Praise God for such a beautiful little miracle who is already serving as witness to his great powers..I am humbled..

Harrison's 1st Week of Life

Harrison's first week of life has been quite overwhelming. I am going to attempt to keep weekly updates but I am taking it one day at a time. So let's begin..Harrison was born and had APGARs of 7 and 7. His oxygen levels were not great after the initial assessment and due to his heart defect he was taken to the NICU. Nothing is harder than watching your baby be born to only be taken away quickly. Even though I knew this would be the case, it only prepares you..it doesn't soothe the pain. Upon initial assessment it was determined he did have imperforate anus. Harrison was born at 11:20am but it wasn't until 6pm that we were finally able to go see him. They had difficulty putting in his IVs. Also, during this time he had an echo done on his heart to assess the defect. His heart defect of TAPVR was confirmed but there was an additional concern..the arteries branching from the heart to his lung were doing so in an abnormal way. The duct that closes in all babies after they are born is located next to this abnormal connection. So there was concern that when it closes there could be other issues requiring more immediate surgery. So it was determined that he would be monitored closely and watch him for the next few days to see what happens as the artery closes. He was also being given room air to help him in is breathing and a gastric tube was inserted to help remove stomach contents and any air. The following day he has the room air removed and he was breathing on his own. Praise God! At this point..everything becomes a blur..There has been so many doctors and so many tests that I can't remember what happened when or where so I feel a list would be easiest and fastest so here it goes..

Imperforate Anus- They decided that they would give it a few days to see if he passed stool out of an opening they couldn't see or somewhere else like his bladder. And he did ending up passing stool out of his urethra meaning the connection was either to his bladder or urethra. They will determine for sure later on. It was then decided that a colostomy was needed so he could pass stool and he had surgery on Thursday to give him a colostomy. Surgery went well and he now has a colostomy. After speaking with the surgeon, we were informed that he does have an area that indicates that an anus should be there which means there is more than likely muscle there. This is a good prognosis for when they actually do the repair of the imperforate anus which is expected not to occur until he is about 10-12lbs. Please keep this in your prayers.

TAPVR- This particular type of defect has 4 different categories and Harrison has the most rare form which is to the coronary sinus. BUT although the rarest, it is the one that doesn't require immediate surgery after birth. Thank you God! Due to the imperforate anus, and the constant monitoring, cardiologists have had more time to really take a look at his heart. They have done a repeat echo that showed the duct that should be closing is getting smaller but it is still not closing so they are administering medicine to try and close it. He has another echo at 6am Sunday morning to see if it has closed. We will know more about his surgery at this point. They have also scheduled a CT of his heart and lungs this week to take a 3d look at his heart to determine exactly what needs to be done before his heart surgery. Again..the extra time has allowed them the extra testing to really workout the details of his heart surgery..I totally believe this is the hand of God!

Renal Scan- Liver and kidneys looked great, but test reveal and spleen and several smaller ones. After doctors reviewed results, it was determined that the polysplenia has no known problems.

Ultrasound of Bladder/kidneys- Revealed that the bladder was not emptying fully. Could mean he has neurogenic bladder which would require catherization to empty bladder. Monitoring of wet diapers along with catherization to see how much is left over is being done as well as a ultrasound of his spine was ordered. Most recent reports show very little residual urine so keep the prayers coming that progress will only continue..Praise God for that.

Ultrasound of Spine- Revealed a possible tethered cord at L4. At first, I was terrified of what this could mean..but after meeting with neurosurgeons, it was determined that even if it was a tethered cord, that prognosis could still be very good. A MRI will be scheduled at some point to take a better look at the spine. Again God's hands are on my little man.

Eyes- It was stated that there is a possible coloboma of the left eye. The ophthalmologist will do an eye exam on Sunday. We should know more by then. Please pray for his eyes.

Pediatric Geneticist- Identified all of the above and mentioned some other cosmetic things not noticeable to most, but she is currently researching the polysplenia and tethered cord to see if it has any relation to Chromosome 7 which is unknown as to what it may cause. She also said he looks very proportionate (thank you Lord) and that she has ordered an ultrasound of his head just to check. Please pray that this test will reveal nothing abnormal.

So overall, Harrison has seen about 7 different specialists at this point and he is only 5 days old. I praise God for everyone who has lifted him up in prayer because I see miracles everyday in him. I have seen the presence of God in every day of his life in some way. For example, most of the time you never know when the doctors will show. But by God's providence, I have been at Harrison's bedside almost every time when the doctors have come to assess or provide results. I can only thank God for the perfect timing of those meetings. The most difficult part of this journey is not being able to bring him home. The hospital does not allow children to visit so his big sister can only see him through pictures and we have to leave her so often. She has been wonderful and I thank God I have wonderful family and friends who are willing to help out. Please continue to pray for our son, for his journey is definitely not over. And please pray for my family. This is a hard road, but I believe it will only make us stronger and draw us closer to the Lord. We appreciate all of the thoughts, comments, prayers, phone calls, and cards. And although we may not return the calls, emails, etc..it is appreciated and brings a smile to our face and warmth to our hearts.

My Birth Story

Well..I woke up Sunday to signs of labor. Some bleeding and contractions but nothing to call the doctor. The funny part is that on Wed I was no where close to having a baby, no dilation or thinning of cervix. So I went to church and lunch with my parents all while having some contractions every hour or so off and on. I came home and finished cleaning the house and still nothing seemed to be progressing. Evening came and I started having contractions about 15-30 min apart but still not consistent. I went to sleep about 10:30 and woke up about 12am to contractions again but they felt a little stronger. But again, no pattern could be set but they were occurring enough that I couldn't sleep. So I got up and took a bath, still the same thing. I went down stairs and finished packing and decided to call the doctor at 5am to make sure that these contractions would not be putting the baby in danger. As expected they said call back when they are 5 min apart for an hour. I got frustrated and laid down and dozed off waking here and there to contractions. Emily and Jamie woke up about 6:30am Monday morning to get dressed for school and work. I decided to go get in the bed and try and sleep some more. I went upstairs and laid down and another contraction came and BAM..my water broke around 7am. So I called the dr back expecting to be told to go to the hospital but instead was instructed to time my contractions and detect fetal movement. Going on my previous labor with Emily, I knew that if we didnt act fast I would have this baby at home. LOL! Well as I waited on my dad to get to my house I was having to breathe through these contractions and they were about 5 mins apart. Finally the nurse called back and said go to the office. I was like that is stupid..why go there when my water has broke so off we went. On the way..the nurse calls back to ask about timing of contractions again..well they were now 3 min apart and I could tell she was nervous considering the circumstances of the baby and that 2nd babies come in about 1/2 the time of the 1st. She said she would call me back and let me know what the dr says..Well she called back and said the dr still hadn't called but want to know contraction time which was ranging between 2 or 3 min but they were now impossible to talk through. She hung and immediately called back and said the dr said go straight to the hospital. HALLELUJAH! FINALLY! EPIDURAL here I come..:) So we arrived and I met my mom at the front and was escorted up. They took me in and said they would need to monitor me for about 30 min before anything could be done..I was like "WHAT! I have to endure this for 30 min..well then she couldn't get the monitor to pick up my contractions..I was like "You've got to be kidding me. LOOK at my face..does it look like I am not having contractions." Then she decided to check me..I was ONLY 2cm dilated and it was 8:40am. I was then told I had to get to 4cm before an epidural..I thought I would die. By this point, contractions were 2 min apart and coming stronger than ever..I was breathing so hard that when they put the oxygen mask on me I was sucking the plastic together and couldn't breath..GO FIGURE! LOL! AND THEN..the worst part is that they were still trying to get the 30 min of monitoring and I was having to endure this while laying on my back..WHO CAME UP WITH THIS IDEA TO LABOR ON YOUR BACK? Hello...isnt supposed to be gravity working with you? I was about to go out of my mind. Meanwhile, I am begging for an epidural, they can't get the monitors to get good reading's, the baby's heartrate was all over the place, I am suffocating myself with my own oxygen mask, my husband is signing mine and his life away, the nurse is frantically trying to set everything up while dealing with my crazy self, and my mother was trying to help me get a grip, and my contractions were one right after the other..THEN the anesthesiologist arrived, but she says she can't give me anything until I have so much IV fluid in me...WELL I wasn't close considering I had just got the IV so she preps me anyway to have it ready. So I get to sit up..HOORAY! She gets everything ready and then tells me she can only give me a test dose. WHAT? She gives me the test dose while I am getting the rest of my fluids..I do fine and she gives me my 1st dose of the epidural...HALLELUJAH!! Then the dr steps in and says lets check your progress. She said "YOUR COMPLETE!" I was like "what..what do you mean complete.." She said I was fully dialated and ready to go..I was shocked..the nurse looks at my chart and says 71 mins it took me to get from 2cm to 10cm..WOWZER! I got lucky in getting the epidural b/c they dont give it once you get ready to push..Thank you Jesus for the timing..So as the epidural sets in..I am gaining my sanity and the dr has me start pushing..Again..Baby's heart rate is showing signs of distress..We try a couple more times..same thing..we rest for a while..change positions..and still not making much progress..so dr says prep the OR..she then says we are going to try a vacuum..but we are doing it in the Operating Room (OR)SO off we go...Jamie is getting dressed to come in..and the dr has me prepped for a c-section..I was given an extra dose of epidural just in case of C-Section and man that was quite some med..completely numb. She told me give it everything I had and we start pushing again and then baby Harrison entered the world with the help of the vacuum at 11:20am. He cried they NICU team took him and assessed him and then left with them after he got a kiss from his mommy. :)Meanwhile, the dr had to spend a little extra time on me due to some problems with delivering the placenta. But all was well in the end..I was then rolled to post partum recovery room and the waiting game to hear news on Baby Harrison began..

38 Week Appt

So I went back today for my 38 week appointment. Although I have been having Braxton Hicks contractions and painful ones too, I knew that there would be no cervical change. This made me nervous since they had been talking about an induction at 39 weeks. Well, I was right, baby's head is not engaged and no cervical change. BUT..the dr feels there is no need for an induction. I was actually quite relieved. I am much more comfortable with letting my body do what it knows how to do. He said everything looks good. So I left feeling very much relieved that at this point there is no need for an induction. I go back next week for a growth scan on Wed and then my 39 week appt on Friday. And my little man was once again dodging the doppler as the nurse was trying to get his heartrate. But once she did get it, it was great. The past two weeks his heartrate has been the best its ever been. And on another note..I think we have finally reached a consensus on a name.....it is Harrison James. Of course as with all things..I leave it open and subject for change..but for now it is what we are going for. Keep the prayers coming for my baby boy because he really likes being inside his mommy's tummy.

36 Week Appointment

Well, today I went for my 36 week appointment. Blood Pressure was great (114/68), no weight gain since last week, iron levels good, and no protein, sugar, or bacteria found in urine. Today they checked me for Group B strep and checked for dialation and effacement to see if I am showing signs of a favorable 38 week induction. But my little guy likes hanging out. I am barely a fingertip dialated and no thinning of the cervix yet. So 39 weeks is looking like the more favorable option. Please continue to keep my little man in your prayers as he continues to grow. I am getting more and more anxious for his arrival.

35 Week Dr Appts

Well, today was supposed to be a day off from school, but instead, it was filled with appts. I had a hair appt @ 9am and that lasted until 12..met Jamie to eat lunch and then my 1st dr appt was with the diabetes center @ 2pm. My fasting numbers have been running high, but we think it is because I don't check them as soon as I wake up. So I guess the next week will be a test..I love going to these appts because they tell me that having ice cream as my bed time snack is good for me to have. It is the best thing to hear. I finished up here at 2:40 and my next appt was @ 2:45 with the High Risk Women's Institute for an ultrasound/growth scan. This place is literally in the same office as my diabetic center but the funny thing is I have to go back to the same front desk people and sign in AGAIN and sign the exact same payment agreement that I signed when I came for the diabetic appt. But I love going here b/c the staff and doctors are just wonderful! They know you by name, they take care of everything for you and are just genuinely caring people.
So we went in for the ultrasound and the tech begins her measurements. Junior(nickname for the baby) has definitely grown in the past 3 weeks and he now weighs an estimated 6lbs. His head measures at 37 wks(quite a noggin)but his femur bones only measure 32 weeks..That is 5 weeks behind, but they have grown since the last time. Of course I really want to see his little legs grow and catch up, but the Dr. reminded me that as he gets bigger the measurements become less accurate. I also had them look for some of the anomalies that are associated with Cat Eye Syndrome like kidneys, ears, stomach and bowels, and anal atresia. Now most of these anomalies cannot be detected by ultrasound, but sometimes they can see problems. As always, we tried to get good 3d pics of his face, but he either turns at an odd angle or puts his hands in front of his face. But the dr said he has 2 kidneys, stomach appears normal, and she tried to see abnormalites like anal atresia, but that is rarely seen but she said she didn't see anything abnormal. He did like showing his feet and toes..so precious! The dr was also able to get a picture of one ear..as far as to its location, that couldn't be determined because he wouldn't keep his head turned right. The other side of his head is lodged against my pelvis so we couldn't see an ear on that side. His heartrate runs a little on the low side (114) but it usually picks back up to 125. Overall, things look good and another appt was scheduled for Dec 9th although the dr says she doesn't expect to see me because I will have him by then. YIKES! The Genetic Counselor also came in and gave me a copy of the genetics lab report and I read and we discussed all the genetic lingo. Not only does his fragment chromosome have a piece of Chromosome 22 which causes Cat Eye Syndrome, but it also has a piece of Chromosome 7 which they have no literature to tell them what it might cause. So I leave this appt @ 4:00 and off I head to the 4th floor for my OBGYN appt @4:15.
At this appt I learned that the plan is to induce at 39wks but a more specific date will be determined as they get closer. I was told that if my cervix is favorable, I might possibly be induced as early as 38 wks. YIKES! I asked him if the heartrate being low made me more at risk for a c-section and he said that is a baby boy for ya. He said he was not concerned at all about his heart rate. That made me feel much better. He then said I will start coming weekly now and that they will check my cervix next week..UGH! So overall, everything good here too. Now it is back to school to try and finalize everything..UGH! **GROAN** **SIGH** Stay Tuned..more updates to come and Keep Praying for this little guy b/c it isn't long before he makes his grand entrance. :)

Other articles on Cat Eye Syndrome

This article provides good information on the variable characteristics that can occur with Cat Eye Syndrome. This information is located in the latter part of the article.
Link to article

Mom- The link below is a case study on a boy with CES and it takes a look at the difference between CES patients with partial trisomy 22 and tetrasomy 22. It says that studies that describe the characteristics of CES should indicate which category of CES it is to help in providing phenotypes of each type.

Case Study

The article below is the only one that I have seen that has provided color pictures of a child with CES.

Pics of CES

Monica's Story

Taylor's Story

Like a Solid Rock

Well, for today I figured I would spend time on those people who have been my rock throughout this journey.

My husband- God bless him for being such a loving husband. I have always said he is my number one fan and cheerleader, and he makes sure that I am taken care of as well as our family. With all that being said, he has rode along on this roller coaster ride sitting right by my side, holding my hand the whole way. When I wasn't sure if I would ever see the light at the end of the tunnel, he was there to reassure me that it would come. When I doubted everyone, when I stumbled in my faith, and when I was sure I could not go on, he challenged me and said, "Do you not believe that our God is more powerful than man? Do you not believe that God has a purpose for everything?" Oh how it was not what I wanted to hear, but it is what he and I both know is the truth. Our God is an awesome God. But,with his firmness, he also embraced me and let me know that he loved me know matter what. He gave me a shoulder to cry on, and ear to listen, and heart that was filled with unconditional love. What more could I ask for? I only hope and pray, that I can do the same in return for him. Oh how I love him, and may God lift him up for all that he has done for me.

My mother-I cannot put into words the connection that my mother and I have. It is one like no other, and if I had to name the many roles she has played in my life:my counselor, advisor, and friend, I would say these are only on the short list. Since I can remember, she has been able to read me like a book. There were times in which I wish she couldn't, but in the end was only to my benefit. Yet through it all, she is my inspiration. She is the one true person who "gets me." We can finish each other's sentences and thoughts, and we can laugh and make the other cry. But whatever it may be, we have endured it together, the thick and the thin. I love her for her ability to "jerk a not in my tail," and for her ability to "provide words of wisdom." On either end of the spectrum, she has always been able to help me maintain stability and faith in my life. I can't imagine my life without her, and her endless love and support for both my family and I are endless. She has provided for us in more ways than just those that are tangible. She has taught me so many things such as how to be strong, how to live according to God's word, and most of all the beauty and warmth of a mother's love. I love her with all my heart and soul, and I pray that she will realize the depths in which she has touched my life. Not a day goes by that I don't thank God for having her in my life.

My daughter- Only five years old, but has the mind and soul of a young lady. Since the day we told her I was pregnant, she has shown nothing but love for her brother. She kisses my belly, talks to him through my belly, and gives her brother hugs. Her innoncence revealed to me what society and science had jaded in my mind. She knew mommy would cry "because the baby had a hurt heart" so she asked her Sunday school class to pray for her brother. She knows that her brother might have some problems when he is born, but it hasn't stopped her from loving, kissing, and hugging him every night. It hasn't stopped her from practicing her reading and writing so she can teach him how to do the same things. She showed me the power and beauty of unconditional love. When I look at her, I realize the blessing she is to me, and I thank God for her.

My friends at work- There are many, but they all have been invaluable. Some of have carted me into their rooms to hear me cry my tears of sadness even when they themselves did not understand everything that was going on. There is one who has practically kept me afloat in my job and done so with no complaints and only offers to do more. There are those who tried to understand and offer their words of love, support, and sometimes just a hug. There are some who have prayed relentlessly for me and this baby, and I cannot tell them how much I appreciate it all. Regardless of their role, they have been there for me. I love them all and hope I can some day return the favor.

My best friend- Oh man I cannot thank her enough. The countless prayers, the book on Fear she mailed to me, and the words of love, faith, and strength that she has given me have only made me admire her more. She too is my rock, and I love her for everything she has done for me.

The others- It's funny, but I can't think of a word that can group together the countless others in my life who have and still do pray, send me cards, emails, and words of encouragement. The Peru Mission team who prayed for me and this baby even while spreading the word of God, the friends and coworkers of my family that have offered to pray for me or to cover for them so that they can be there for me. The countless church members who have expressed their kind words and added me to their prayers, and I am sure that there are some who I don't even know, but they are praying too. It is overwhelming, but it allows to me feel the presence of God in the midst of it all.

I cannot express enough my gratitude to everyone. I am truly blessed to have you all as a part of my life, and this baby boy, I know, can be rest assured that his life is one that has brought many people to their knees in prayer, and many hands lifted up in praise to God. Nothing short of a miracle.

Thank you and God Bless You!

Information on Cat Eye Syndrome

I have found an article that I feel gives the best information about cat eye syndrome also known as tetrasomy 22pter--q11. (And yes I know the meanings of all the numbers and letters in that name, but will save that for a later post.) I am posting a link for this site in case you would like to view it. Cat Eye Syndrome is so rare that much of the information available through the internet is sparse or gives conflicting information. But then again, the symptoms vary in all patients, so finding exact answers before the baby is born is almost impossible. Very little of the anomalies can be accurately diagnosed by ultrasound.But for those of you interested here it is..

Cat Eye Syndrome

God's Little Miracle

I mentioned in my first post that this journey in discovering my unborn baby has Cat Eye Syndrome has been one totally ordained by God. I truly believe this and I thought i would take the time to share what has been revealed thus far..Some might say that these are results of circumstance, but there are just too many for that claim.

1.We spent 18 months trying to having a baby, with 5 of those being monitored multiple times a week to make sure timing was perfect and none were successful.
**The first cycle I stopped all the meds, I became pregnant.

2. My initial ultrasound showed no heartbeat,
**But a follow up appointment only 4 days later showed the tiniest flicker of the heart of my little bean.

3. My first ob appointment was with a new doctor who I quickly realized was exactly what I needed to maintain a healthy pregnancy. My blood pressure on that first visit was 140/90 and I was only twelve weeks. My future prognosis was looking bleak.
**My follow up visit showed a much lower blood pressure and it has remained at a level that is better than I have when I am not pregnant. Thank God!

4. At sixteen weeks, my daughter contracted 5th's disease, a common childhood virus, but one that can be harmful to an unborn baby.
**Tests revealed that I was already immune to it and neither I nor the baby were at risk.

5. At 18 weeks, I went in for an ultrasound and a standard technician noticed a shortened femur bone and possibly rotated heart. A follow up ultrasound with a high risk doctor was recommended, but I was told I would have to wait because the office was closed.
**I received a phone call the following morning from a lady at my drs office who offered to schedule me an appointment at a different location. I was so relieved and thankful because I was sure I would have to call and remind them to schedule the appointment. I found out several weeks later that the lady who called me recognized my name and remembered I had coached her daughter. She later told me she wanted to help in any way she could so she called to see what other offices were available so I could be seen sooner. Truly an angel of God!

6. I went for my follow up ultrasound with a highly trained techinician and high risk doctor and they revealed that the femur was actually in normal range and heart looked normal. But further testing was scheduled just to be sure and reassure me

**This testing eventually led to the diagnosis of a congenital heart defect known as TAPVR and of my baby's condition of Cat Eye Syndrome which are rarely diagnosed prenataly.

7. At 26 weeks I found out I had gestational diabetes. I was terrified of what this might mean for my health and busy life.
**Despite my high test numbers on diagnosis, I have been able to maintain control through diet alone. I have yet at 34 weeks to gain any weight during this pregnancy, but baby is growing just fine.

8. Being a patient at a high risk facility put me in contact with a genetic counselor who has truly been an angel.
**From the beginning, she has offered me her office and cell phone number to call at anytime if I had questions or concerns. She even answered my call on a weekend. God bless her because I was a basket case. She has kept me frequently updated on every step of the process of testing and has informed me of every conversation that she has had with the geneticists locally and those in Washington State. And despite all the overwhelming news she has had to deliver to me, she has always remained optimistic and went out of her way to give me every possible scenario.

9. This pregnancy fell at time that was just perfect for what I was about to go through.
**Being a head volleyball coach and something I love to do, my season began at about the same time I was finding out all of this information. It gave me the motivation to get up and get going, and it provided an outlet where I could not dwell in my own self pity. It surrounded me with people who were supportive, and helped me see the light at the end of the tunnel.

10. Most of all, this journey is not over, but I have been provided with an overwhelming peace, and I know that God has not revealed to the world his purpose for this baby. But I know there is one. All of these circumstances have educated me in ways I would have never known.
**I now realize the true miracle it is to even conceive a child.
**I have seen the miracle it is to give birth to a healthy child.
**I have learned that genetics are complicated, but yet every single fiber of our dna is so vital to our existence. Only a mighty and superior God could have ordained such a thing.
**I have learned that being in control is not the most important thing, and I am still trying to fully relinquish my grip on this.
**And I know that this journey has only just begun.

Where Do I Begin?

It's really amazing to reflect back on the circumstances that have led us to the point we are at today. Yet, as wild as it has been, I can only describe this journey as one completely ordained by God. So with that being said, here is how it all began.

In October of 2008, my husband and I began to see a fertility specialist to help us determine the reason for my long and sometimes absent cycles. I was quickly diagnosed as having polycystic ovaries and was put on fertility drugs to help regulate ovulation. I went through 3 cycles of this drug and all were successful in ovulation, but none succeeded in producing a pregnancy. At this point, I was beginning to think that my dream of having a second child was ending quickly. I could not afford to do IVF, and the medication route was proving to be a dead end. After the 3rd failed cycle, the doctor switched me to a different fertility drug to see if I would respond better. Again..this only led to successful ovulation but no pregnancy. The reality of never having a second child was really starting to take a grip, and the emptyness I felt was really beginning to eat away at me. After meeting with the doctor, it was decided that I should have some further testing done to determine if I had blocked ovaries which may prevent fertilization. I was to call and have it scheduled with the upcoming cycle. Well, I called, but somehow the paper work never made it through in time to have the testing done during that cycle so I was going to have to wait until the next cycle. This was in March of 2009.

April 6th, 2009- Although I was not currently on fertility drugs, I was still keeping track of my cycles. So on April 6th of 2009 I was officially late for my cycle and decided to take a test just to see. And tada..I was pregnant. I was so excited and couldn't wait to tell my husband. I completely felt that this was a miracle of God. We had been trying to conceive for 18 months and it finally happened. I called the fertility clinic who then immediately brought me in for blood work. Having conceived one child already, this was an entirely new process for me. I was told that my initial bloodwork showed positive results for pregnancy, but I would need to return in 2 days to have it tested again to see if the numbers were rising..Again, this was all new for me. What happened to the good ole days where if your test showed positive, that was it?
So two days later, I returned and my results showed that my HCG levels were rising so now a viability scan was scheduled. I was told that in order for this pregnancy to be considered viable, a heartbeat had to be found.

April 13, 2009- I show up for my ultrasound with much prayer and hope that a heartbeat would be found, but with a nervous energy that I would leave with shattered dreams. As the doctor is doing the scan, I hold my breath waiting to hear the answer. As my gut instinct told me, he said, "I see a sac, but I can't find a heartbeat." He did say that it could be too early and that I needed to come back in a week and have another scan to see for sure. If there was still no heartbeat, then I would have a reason to be concerned. So I was rescheduled for another ultrasound.

April 17,2009- I return to face the machine again. This time, I am even more hopeful that a heartbeat will be found. And as my instinct told me, the doctor said "Here's the heartbeat." I was so relieved. But then he said, "It looks like there is another sac in there." He scrutinizes the screen and takes pictures, but he said he just couldn't say for sure so he wanted to see me in another week to take another peek. So I left the office with an entirely new set of worries, is there one or two?

April 24, 2009- I again return for the second look. The doctor immediately finds the heartbeat again, but it is at the same rate it was the week before. I mention this to him knowing that the heartrate should be increasing, but he says not to worry. Yet he still thinks there is a second sac but that it looks empty. He decides he wants me to go for a second opinion at about 8 weeks because it should be very clear if there is one or two at this point. So I am scheduled to have another ultrasound.

May 9th, 2009- I show up at the hospital to have another ultrasound to confirm if there is one or two babies in there. If you have had any experience with an ultrasound tech, they are not allowed to tell you anything so I did my best to pry answers out of her. She said she did not see a second baby, but that the one she could see had a good heartrate. So I left knowing that I had one viable pregnancy and could begin the exciting journey of preparing for this little one. I was then released to go to my regualr obgyn.

I decided at this point to go with a different obgyn since I was not pleased with my previous clinic. After contacting the new facility and finally getting scheduled for an appointment, I was almost 12 weeks pregnant.

I met with my new doctor, went over all my confusing reports from the fertility clinic, and discussed my prenatal plan. Being only 29, I was not considered high risk, but I was offered the option to have a NST scan done at 12 weeks. I had been on many pregnancy forums and was told that you got to have an ultrasound with an NST, so I couldn't resist the urge to take another peek at my little bean. I opted to have it done.

June 2009- Around the 1st week of June, I was scheduled to have my NST scan done at hospital in Charlotte, NC. When I was taken back to the room, I was so glad I ended up there because the facility was great. After reading the paper work and having the procedure explained, I suddenly became very nervous. They would be measuring the neck fold of the baby as well as some other parts of the baby to assess my risk for having a child with Down Syndrome, Trisomy 13, or Trisomy 18. I was quickly thrown into the reality of what this test might reveal, and my desire to have another peek at my little bean seemed not so important anymore. As I lay there, the ultrasound tech took all her measurements and said everything looked great. I was relieved and left with some great photos of my little peanut. I was happy. A few weeks later, my results were mailed to me showing normal findings with the NST.

July 2009- I continued the standard prenatal care and was anxiously awaiting the next ultrasound to be done at my obgyn so I could find out the gender. It was scheduled and my husband and I planned to take our 5 year old daughter so she could see the baby.

July 16, 2009- Off we went to the doctor with only hopes and dreams of what color the nursery would be and what names would we like the most. As I lay on the table for the ultrasound, I watched the ultrasound tech maneuver around and take many measurements. She was not talking very much, and I noticed that she kept taking repeat measurements of several parts of the baby. Now it had been 5 years since my last experience with ultrasound, but I quickly began to think that she was not being silent just because she was non social. She also knew we were waiting to hear the gender and my daughter was getting ancy to leave. She continued to take many measurements and my instinct was telling me that she was seeing something but I just couldn't figure out what it was. She finally did a quick scan of the baby's bottom, revealed it was a boy, and quickly got up and said, "I'll bring you pictures back in a minute." I knew then that something was not right. THe tech returned and gave me a few pictures and said to have a seat outside the doctor's office. My husband and daughter left to go back to the waiting room. The tech then went into the doctor's office and shut the door. I definitely knew then, that what was being said behind that door was not how beautiful my baby was, or that everything looked great. A few minutes later the doctor called me in and asked the nurse to bring my husband to the office too. My stomach turned and I could feel my adrenaline rushing. And so it began..
"This is not the news I was expecting to give to you today."
"The baby's heart looks rotated."
"The baby's femur bone is measuring behind."
"You have 2 markers for Down Syndrome."
"One good thing is your NST scan shows a low risk."
"You will need to go for another ultrasound at a high risk facility."
" There are many things that can cause these results."
Oh the flurry of thoughts, the rush of adrenaline, the sudden feeling of doom..I couldn't handle it and I broke into sobs. I wanted to know now exactly what the problem was. I needed answers, but I was told that the office would be closed until the following Monday. I honestly thought I couldn't wait that long. So my family and I left that office in total shock and devastation and I left my dreams of having a healthy baby laying on the ultrasound table.

At home, I couldn't eat, sleep, or do anything but cry. I needed answers and all this unknown was ripping me apart. On Friday morning, I received a phone call from the doctors office. The lady said she knew that the Level 2 ultrasound office was closed until Monday but that she could try and schedule me with the clinic in Charlotte that I went to for the NST scan. I jumped at the chance and thought to myself..only God can open doors like this..he knows my heart. She quickly called me back and said I was scheduled for Monday afternoon. I cannot express to you what that weekend was like..Some moments I was a complete basket case, other moments I was a zombie, and sometimes I was so overwhelmed I just couldn't think straight. Of course I also spent considerable time researching the internet trying to find the answers myself. None of which brought any sense of peace or calm to my life. So on Monday, we go in for the level 2 ultrasound. After having the ultrasound done, the doctor explains that she doesn't really see anything significant that would be cause for concern. I asked about the heart and she said, "well he is not giving me text book pictures, but I really don't think there is anything to be concerned about. I will schedule you for a fetal echocardiogram just to rule out all possibilities." I asked about the femur bones and she said "Well it measures about a week behind, but unless we find other markers, I don't consider the femur bone an accurate tool for diagnosis." I then asked about an amnio..At this point the genetic counselor came in and explained that I had no medical reason to have one done so I would probably have to pay out of pocket. She then explained that my NST risk assessment and ultrasound results gave me a .033% chance of having a baby with downs, trisomy 13, or trisomy 18 and that an amniocentesis carries a .367% chance of a miscarriage. She also reassured me that there was nothing that indicated to them that there were problems and reminded me that I was in a facility that looked at nothing but high risk patients. So I was relieved for the most part. I opted to not go through with the amnio and my fetal echocardiogram was scheduled for a few weeks later. I praised God that all was well.

August 2009- I return to Charlotte to meet with the fetal echocardiologist. He does an ultrasound of the baby again, and quickly turns to me and says "I think they are right in that your baby has a heart defect, but it is one that can easily be fixed. Let's talk about it in my office." So down the emotional roller coaster I go again. We are then informed that what he suspects my baby has is a rare heart condition called TAPVR or Total Anomalous Pulmonary Venous Return. He says it is fixed in one open heart surgery procedure and he suspects that my babies procedure would not need to be performed immediately. He did tell me that I would now have to deliver at that hospital which meant switching obgyn's again, but he made everything seem so simple and not a big deal that I was really not concerned. I left the hospital with a pretty good feeling.

But then I got home..I sat down and remembered the doctor telling me that if the baby had a heart defect, his risk of having chromosomal abnormalities would increase. I immediately was devastated. I just felt that this was inevitable. Over the next few days, I spoke with the genetic counselor and cardiologist and discussed my concerns. Both assured me that this was not a defect found in babies with downs, trisomy 13, trisomy 18. But I wanted confirmation, I just knew I needed to know for sure. The genetic counselor informed me that since there was now a heart defect, I could have an amnio done but it needed to be done quickly since I was getting closer to the time in which doctors did not do them. The discussion with my husband proved to be much more difficult than I thought. He is a numbers man and I am a realist. Statistically, he just couldn't justify taking a risk of miscarriage when my risk of a baby with chromosomal abnormalities was so low. I completely understood, but my point was that IF there was something wrong, I needed time to mentally prepare myself for the journey. I just didn' t think I could handle having another stick thrown into the fire when the baby was born. I felt having an amnio was important for my mental sanity. I completely respected my husband's viewpoint, but I was so anxious inside that I just couldn't let it go. We met with the genetic counselor again and discussed the options, weighed the risks, and heard each other's side. We were at a standstill, but finally agreed to go through with it. The procedure went well and I had a busy weekend and upcoming week to help pass the time for the upcoming results.
THe following week, I received the initial results for downs, trisomy 13, and trisomy 18 and all came back negative. I was relieved. She said that the other results would be back in about 2 weeks but those were abnormalities that were much more rare.

Two weeks later I got the call: The results showed that the baby's cells had an extra fragment of a chromosome that was in every cell.
*This could be something that my husband and I carried, and if so, it would carry no significance.
*This could be something completely new, but still carry no significance.
*This could be something completely new, and be related to a specific syndrome but the chromosome had to be identified.
Regardless, I just couldn't believe what I was hearing. I mean, less than 1% of babies have something like this. So of course I began researching what chromosomal abnormalites were related to the heart defect. Immediately I found Cat Eye Syndrome. I just knew that had to be a possibility.
The genetic counselor called and confirmed that neither my husband nor I carried that fragment so this was something completely new in the baby. She also confirmed that it was either Chromosome 14 or 22 and that if we wanted to go for further testing it would have to be shipped to Washington State. We opted to go through with this testing. Meanwhile, I mentioned Cat Eye Syndrome to the genetic counselor. She said she had looked it up and discussed it with the geneticist, but he wasn't sure that it was that. In my heart of hearts, I just knew it had to be. How can you say it is not Cat Eye Syndrome when it comes from a fragment with chromosome 22 and the heart defect most commonly associated with this syndrome is TAPVR? It just seemed to fit. Well after a month and half of waiting, I finally received the phone call with the final results.

October 22, 2009- I decided to ride home with my husband from the volleyball game. (I am a head coach of a varsity team.) Again, this proved to be another decision led by God. It was something I never did, but I wanted to spend some time with my daughter. On the way home my phone rang, and it was the genetic counselor. And again, my gut instinct was confirmed. The fragment was confirmed to be the section of chromosome 22 associated with Cat Eye Syndrome. I was more numb than anything. Here I was so close to the end of this pregnancy, and I was just now finding out what I knew all along. I looked at my husband and explained everything she relayed to me and the car went silent. I didn't know what he was thinking, feeling, nor did I know what to say myself. Once home, the silence continued. I wanted so bad to know what he was thinking, but I wasn't sure how to approach it. He had watched me cry, scream, and shout, doubt God, be angry with God, and question everything and everyone, even my own existence and he always remained solid and optimisitic. Now here I was with no emotion, and I wondered if he was just waiting. Waiting for the next bomb to explode.