Where to begin... So much has happened since Friday with even more left to occur. We don't have the words to adequately express our gratitude to you all for your countless prayers for our family. We've been overwhelmed by everyone's love for us & our son through this journey. God certainly has great plans in store for our sweet boy. Thank you all for continuing to lift him up in prayer as each new circumstance arises. Thank you also for your patience with us in getting the blog updated. Between tests & meetings w/doctors & attempting to recover from the whole birthing experience, we've not had two minutes to rub together. I was discharged from the hospital today & we are now residing at the Ronald McDonald House in Chapel Hill, so hopefully we'll be able to get a bit more rest & have a chance to catch up on things. For the sake of time & sanity, I'll just summarize all that has happened to this point.
I was awake all through Friday night with lower back pain that continued through the day on Saturday with increasing severity. Around 4:30p, we packed the last of our bags & headed out to Chapel Hill, curious if this was the real thing. We were admitted by 6p & at 3:40a Sunday morning, February 25, Isaac Jordan Leino was born! 7 lb. 10 oz. & almost 19 inches long (48 cm). After a few minutes, they got him breathing & I was able to hold him for a few seconds for a quick picture. Then the NICU team rushed him off to the Neonatal Intensive Care Unit to stabalize his breathing & get all the necessary lines in him for meds, monitoring & oxygen.
About an hour after birth, a NICU nurse, Laurel, came to our room to give us an update on Isaac. After much effort, they were able to get all needed lines in to him, stabalize his levels, & do a full evaluation of his health & status. He was now incubated as he was needing to put so much effort into breathing on his own, though breathing room air with low oxygen assistance. Sonogram confirmed the presence of HLHS, so he was now receiving prostyglandin through an IV to keep the ductus arteriosis open in his heart. Laurel told us that several other defects/abnormalities were also discovered, now giving cause for more testing to be done. Isaac has a cleft palate. His left ear is malformed, giving concern to his ability to hear out of that ear. Excess skin folds on the back of the neck were present, which often is indicative of other problems. He also has a spot on his lower back that was discolored & dimpled in, which could mean spinal development problems. Due to the combination of these defects, the doctors decided to do a genetic evaluation, retesting his chromosomes for abnormalities, particularly DiGeorge syndrome. These all had been tested during pregnancy coming back as normal, but it is possible that they may have missed something in the original test. It is also possible to have these defects with no genetic syndrome present, so we will continue to pray that the tests come back confirming that there are no genetic problems.
Some Good News:
On a good note, Patience was able to hold Isaac for the first time since delivery on Monday at 5pm for about 1.5 hrs. This was quite an endeavor since he's hooked up to all the machines, but was a very sweet time of bonding for the three of us. Later Monday night at 11pm, I (Jordan) was able to hold him for the first time. Words can't express the emotions Patience and I felt while being able to hold him close. He's so beautiful and strong through all of this. Even the nurses and doctors have commented on his high tolerance and strength thus far. On Monday morning, they did some sonograms of his brain, spine, and kidneys. This morning (Tuesday), they let us know that his brain, spine, and kidneys look great, with the exception of a small cist on the back of his head and another small cist on his back. The doctor said that they would continue to watch these cists, but have no reason to think they will be a problem. We praise God for these good reports!
Some Bad News:
At 2:30pm on Monday afternoon, they did an x-ray of Isaac's diaphram. They found that his diaphram had not developed completely, resulting in the inability to take deep breaths. This is probably why he was having such a hard time breathing when he was born, which was the reason for needing the ventilator. We spoke with one of the cardiologists, Dr. Buck, today about this finding. He and Dr. Mill (the heart surgeon) had met for a while today discussing the surgery and the effects this finding about the diaphram will have on the surgery. He also spoke of the possibility of doing a tracheotomy to assist his breathing. We don't know all the details about the diaphram and surgery quite yet. We are scheduled to meet with Dr. Mill (the surgeon) Wednesday morning after he's done with a morning surgery to discuss the details of Isaac's condition and surgery.
NICU to PICU:
Just a little while ago, Isaac was moved from the NICU (Neonatal Intensive Care Unit) to the PICU (Pediatric Intensive Care Unit). In the PICU, the nurses will be able to get to know Isaac, his condition, and care needs prior to the surgery, so that they'll be able provide the best care for him after the operation.
As of right now, the heart surgery is scheduled to take place early Friday morning. Over the next couple days, leading up to the surgery, they will be carefully reviewing his condition and test results to be sure they have all the necessary information needed to be as successful as possible in the operation.
(P.S. We'll post pictures soon.)