It's been a long time since I sat down and wrote a blog. So much has happened in what is seemingly a short time although it often feels like it's crawling by so slowly and lasting forever. We've been in the hospital for 20 weeks now and we've had lots of ups and downs. For those of you that don't know Judah's story I am going to attempt to give a brief overview.
When I was 20 weeks pregnant we found out that Judah had a brain defect (Dandy Walker) and heart defect (Transposition of the great arteries and pulmonary stenosis). He was born April 16, 2012 and 4:35am with a pulse but not breathing. They got him stable and transported him to Cincinnati Children's Cardiac Intensive Care Unit (CICU). At 14 hours old he went into cardiac arrest twice requiring a total of 18 minutes of CPR and put on ECMO (A heart a lung bypass machine). Our world went spinning but God faithfully supplied our needs. On day 2 of life his lactate and glucose were sky high so we started asking people to pray and we worshipped God and believed he would bring it into order and he did. We faithfully played Fred Hammond's "No weapon" and believed that no weapon formed against Judah would prosper. On day 3 of life he had 3 seizures as he was being warmed back up from his arrests and that morning we were told that he was brain dead and was not responsive in any extremities with no gag reflex. He had a CT scan which showed no separation between white and grey matter. We again posted for people to pray and we stood firm in faith, believing that God would have the final say and that it would be in Judah's favor! That same day at nearly 5pm the head of neurology came back and said "after looking on better screens we are cautiously optimistic" and he went on to say that there was separation between white and grey matter and that they were very sorry. WE PRAISED GOD because we know that those "better screens" were HIM working things out in Judah's favor! On day 4 he was still on ECMO and he needed to have a heart cath so they had to transport him to the cath lab on ECMO... I'll never forget Dr. Marino saying "everyone needs to know, one wrong move could kill this baby"... It took over 30 minutes to go down the hall. They discovered the reason for the cardiac arrest and corrected the issue. They had to turn off the bypass machine to get accurate pressures and he was doing so well they decided to take him off ECMO in the cath lab. So an hour later he was headed back to his room OFF of ECMO. What a great day that was! He was still very sick but what a God breathed miracle! At week 3 he was prepped for an Arterial Switch (a heart procedure where they switch the two ventricle since his were transposed). We dropped him off at the OR doors and they got him all set up, they even marked his chest for dissection and Dr. Manning decided to do a last minute esophageal echo even though he had just had an echo and heart cath... well that showed the pulmonary valve was 50% smaller than they thought which would have become the aortic valve (which pumps blood to your whole body) since they were switching them. So Dr. Manning decided to not do the switch and to band his PDA instead. That basically never happens. When they go down for a heart surgery they have collected all the data needed and know exactly what they are working with. Just 2 weeks later he had an obstruction below his pulmonary valve and if Dr. Manning would have done that Arterial Switch Judah would have been dead because he would have had no blood flow to his body. God gives wisdom and insight as we faithfully engage Him! Two weeks after that we were getting close to extubating and by a "random impulse" they decided to have ENT come look at his nose since they couldn't get an NG tube in for feeding purposes. Well, turns out Judah has Choanal Artesia which means up in his nose there is membrane and or bone blocking that pathway for him to breathe and after talking with ENT we all decided the best thing for Judah was to trach him. So at 5 weeks Judah got his trach and was so much more comfortable and happy. After that he was having a hard time with feeding so they did a lower GI test and found that his intestines were slightly malrotated. So he was prepped for Ladds, G-tube, Nissen and an appendectomy... It was a rough recovery but finally moved past it! After that his PDA (which they banded at 3 weeks of life) started to close even more and since he had an obstruction under his pulmonary valve he basically had no pulmonary blood flow so he had his second heart procedure which was a BT shunt. A couple weeks after that he had his Choanal Artesia repair and they were certain that they wouldn't be able to clear the blockage so we gathered the prayer warriors and prayed and God allowed them to clear 50% of the blockage. The Doctor said "Mom, keep praying and being positive because it's working! I didn't think we would be able to get anything and you said you believed we would and we did!". GOD is faithful!
After that it was all about getting Judah stronger and healthier and boy God did his thing! Judah was no longer considered critical but remained in CICU because there was no where else for him to go at that time because he was trached. He can only go to 3 places in the hospital with a trach 1. ICU (which is where he is) 2. TCC (they didn't want him since they only have 18 beds and he wasn't sick enough) 3. Complex airway (they only have 11 beds and don't take long term patients). So that leaves us where we are. Sometimes I honestly think God has gone out of his way to keep us where we are for a reason! I believe Josh and I have kingdom purpose with the staff here and showing them Jesus.
Oh and I forgot to say that when he was a month old they told us he was deaf. They came and did another hearing test a few weeks after that which showed the same results. We asked for people to pray over his hearing test (3 weeks ago) and what do you know... He's not deaf ;) haha! "Mass improvement" they say - I say wow God! You rock!! She told us if he was an adult he wouldn't need amplification but since he is learning how to speak she recommends it since it's hard to hear the difference between Sat & Mat or Shoe & Shoes... those all take place in what are labeled as whisper tones. What a great report and we still praise God for perfect hearing. HE IS ABLE!
Two weeks ago we were prepped for going home. He had a heart cath to determine when and what his next procedure would be. It went well but the next morning he plugged off his trach and the force of that plug sent an already forming clot into the BT shunt and was rushed to an emergency heart cath. That day (although stressful) everyone was commenting on the favor of God over Judah. It all fell into place perfectly and when I say that I mean it took a little over 2 minutes for the Doctor who reads the echo's to get to his room after the order was put in and then the Attending literally bagged him herself and they ran him down to an OPEN cath lab that had just been finished being sterilized. It was crazy! When I kissed him at the cath lab door he was the color of stainless steel grey. The next time I saw him he was perfectly pink and back into being critical and was scheduled for his heart surgery for a week and a half later. Which leads us to yesterday...
Yesterday morning Dr. Manning (cardiac surgeon) came to Judah's room to discuss the plan. With normal hearts we all have 1 superior vena cave but Judah has 2 which we knew back when he was still in my belly but they told us it would never help or hurt him so not to even worry about it and honestly we forgot. Well with the Glenn they move the superior vena cave to give blood to the lungs and since Judah has 2 he would be getting two glenns. Dr. Manning went on to tell us that this may be the last heart surgery for Judah since he has the secondary superior vena cave. They will not know for a couple of years if he will require another heart procedure but his cardiologist will follow him closely and hopefully this could be his full repair. I was blown away at God. All along God provided that extra superior vena cava and HE knew that it was going to be used/needed and so he provided it! Yesterday I was listening to the song "You know me" by Bethel Music (loft sessions) all during Judah's heart surgery and as I listened I stood in awe of God! The bridge says "and nothing is hidden from your sight, where ever I go you find me. And you know every detail of my life, you are God and you don't miss a thing"! How true! He saw Judah's need when he was in the womb and he provided accordingly. We didn't know or see how it was all going to work out but God did. He allowed us to walk this path for kingdom purpose! So that many could know HIM and see HIS Glory!! He didn't keep us from the path but instead provided all our needs while in the journey. Two scriptures that have been a constant in my heart in this journey is Isaiah 53:10 "But it was the Lord's good plan to crush him and cause him grief..." And we know why... Jesus and his sacrifice made a way for all of humanity to experience LIFE free from sin and a full relationship with the Father! We KNOW why that was a good plan but it didn't feel good to Jesus but in verse 11 it says "when he sees all that is accomplished by his anguish, he will be satisfied..."! Sometimes our journey's hurt and are riddled with anguish but when we get to heaven and we look back at all that was accomplished by our anguish we, too, will be satisfied. I know that God has used this journey to bring people into relationship with him, to draw his children closer to him, to give revelation and bring transformation... as a follower of the One True God all we could ever hope for is that we and our children would be used for kingdom purpose and that is happening! I don't despise this path because I know the life that it has brought to so many and I know that the God who breathes out stars will continue to perform beautiful miracles for our Prince! Christ is the solid rock and all other ground is sinking sand. We stand firm in this season because we stand on HIS promises! We stand with HIS strength! The other scripture is John 9 Jesus is walking with his disciples and they see a man who was born blind and they ask Jesus "why was this man born blind? Was it his sins or the sins of his parents" Jesus answered "It was not because of his sins or his parents sins. This happened so the power of God could be seen in him..." and I believe that God wants to reveal his power to the world and he has done that with Judah time and time again. Josh was talking with an Attending (Dr. Nelson) and he was telling him some of the wonderful reports of the impact Judah is having all over the world and the response that people have had in prayer and he said "Well, that explains everything, babies that go through what Judah has gone through don't typically make it and I have often wondered how he was doing so well" thats right... GOD is the answer! He is the giver and sustainer of all life.
Judah is 28 hours post op from his major heart repair and we are continuing to pray for a great/smooth recovery. That he is able to come off the vent and extra meds as soon as possible and maintain his stats and vitals without intervention and for NO INFECTION!!
In one week Judah will have his next Choanal Artesia repair (clearing the blockage in his nose) - We are believing that they will clear the entire blockage! If they clear the entire blockage and he recovers good he will get his trach out within a month!!! Please join us in praying for this! The trach has offered a safe airway without damaging his vocal chords which is what the breathing tube was doing so it has been a blessing but the sooner it comes out the better for him!
We thank you for standing firm with us for healing and provisions from God almighty! He is so faithful!! We love and appreciate every single one of you. We would also love to hear how God has used Judah to impact your life for when he gets older so if you are interested email us at jillrobahop@gmail.com or jrobahop@gmail.com
Love and Blessings to every single one of you and PRAISE THE KING OF KINGS!!
Proud Mamma of the Prince
Jillian Robinson
