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.