Tuesday, December 29, 2009

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.

Saturday, December 26, 2009

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..

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.

Sunday, December 20, 2009

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.

Wednesday, December 16, 2009

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.

Monday, December 14, 2009

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..

Saturday, December 12, 2009

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.

Tuesday, December 8, 2009

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..

Wednesday, December 2, 2009

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.