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
Wednesday, September 5, 2012
Tuesday, May 1, 2012
"The Plan"
Praise Reports first: The CT scan and Head ultra sound came back good... showing circulation! We aren't sure exactly how much but they didn't seem to care once they heard there was circulation. Also his fever has dropped... Still has a slight one but it's been coming down. The preliminary screenings have come back negative and we should hear in the morning what the rest of the cultures say but we are BELIEVING that there is NO infection. If there was it would delay surgery.
We met with Dr. Manning (The Surgeon) today and he basically laid out their plans for Judah and they are as follows:
Tomorrow (May 2, 2012) at around 11am-Noonish they will be taking Judah down to have Open Heart Surgery. The total time - from the time he leaves his room to the time we can come back is about 7 hours. They will be doing several things but before I tell you what all will happen during the procedure it's important for you to know that once they open his little chest he will be put on a heart and lung bypass. It's similar to ECMO but instead of going in through is neck they will be going straight into the heart. Here is what they are focusing on during the procedure. 1. Repairing/Closing the hole (that everyone is born with) - they made it bigger so that there could be adequate mixing of the blood in the heart (This was the 2nd balloon in the Heart Cath procedure). 2. They will be looking at both valves more closely - They feel good about what Dr. Beekman did with the ballooning of the pulmonary valve (which will become the aortic valve) but if they feel they can make the valve better once they get in there they can make some adjustments (IF needed). 3. Then they will move over the coronary artery which is the trickiest part of the procedure. The Coronary artery is what supplies your heart with blood so it's crucial that that is a smooth and perfect transition. 4. They will switch the two artery (Arterial Switch). 5. They will close off the PDA.
Once they are done with all of that they will look at "how happy his heart is with the repair". If his heart doesn't seem happy then they will not close up his chest. He would come back to the CICU with what they call "open chest" and after a few days they would close his chest in his CICU room. They are also looking at his other organs and how they function especially the kidneys. He might have to be put on some sort dialysis if they feel his kidneys need help and protection. They are also leaving pacemaker wires in just in case his heart is beating in "funky rhythms".
This is the basics of what they are doing. I don't want to go into to much detail because it could take forever and you and I don't have that kind of time. So what to pray for?!
First, I'm still praying for healing! I know these are the plans of the experts and I realize that God has uniquely gifted them and what they do is truly miraculous. Judah's heart is the size of a strawberry and God gifted Dr. Manning with ability to surgically fix a heart that small.. thats crazy amazing!!! I know God CAN heal Judah without Dr. Manning but I also know that God is in control and whatever path He places us on tomorrow is what He has decided is best. I trust Him.
So if Judah has surgery then here are the needs to pray for: First pray over Dr. Manning and the entire team of nurses, doctors and anesthesiologist! May the Holy Spirit guide every decision and every move they make! Also, pray for Judah as he is being put on bypass. Pray that it is a smooth transition and that it goes better than they even expect with NO complications during or after he comes off! Pray over the entire operation! Pray that the valves and arteries are put into perfect order with NO complications! That the duct (PDA) would be tied off with NO complications. That they can patch the hole with NO complications. PRAY that his heart would be "happy" with the repair and function in a complete and perfect way with NO ISSUES!!! Again pray for a smooth transition OFF of the bypass with NO complications. Pray over his brain that there would be NO BLEEDS or complications of ANY kind!! No swelling, no damage - a perfect brain!! Also pray over his kidneys - it would be AMAZING if he did not need the dialysis and could do the work on his own without causing stress to his body or organs. Also pray that they would be able to close his chest after the operation. If they bring him back with an open chest then it will set his recovery time back even further. After surgery they monitor SO much!! Pray over every part of his body - that he would be STRONG and have a very speedy and safe recovery! A normal recovery for an Arterial Switch would be around 2 weeks but they think he might take longer since he had such a "rough start". I believe God can help him and make his recovery time miraculous! Pray that he would have NO BLEEDS in ANY PART OF HIS BODY and also that he would have no blood clots.
Thank you for standing with us the past 15 days!! God has shown himself REAL and ACTIVE! We are expecting for God to once again show up tomorrow - no matter what path God places us on tomorrow we are believing that He will be there every step of the way and that Judah will come through this and be a great testimony of His great faithfulness. Two Fridays ago God totally shocked us with how he showed up and blew us away with the results of the heart cath!! I believe if Judah has surgery tomorrow HE will show up again and shock us!
Tomorrow from 11am-7pm PLEASE stand with us! Pray with us! Believe with us! and PRAISE with us!! GOD IS GOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The Proud Mamma of a 2 week old KINGDOM builder!!
We met with Dr. Manning (The Surgeon) today and he basically laid out their plans for Judah and they are as follows:
Tomorrow (May 2, 2012) at around 11am-Noonish they will be taking Judah down to have Open Heart Surgery. The total time - from the time he leaves his room to the time we can come back is about 7 hours. They will be doing several things but before I tell you what all will happen during the procedure it's important for you to know that once they open his little chest he will be put on a heart and lung bypass. It's similar to ECMO but instead of going in through is neck they will be going straight into the heart. Here is what they are focusing on during the procedure. 1. Repairing/Closing the hole (that everyone is born with) - they made it bigger so that there could be adequate mixing of the blood in the heart (This was the 2nd balloon in the Heart Cath procedure). 2. They will be looking at both valves more closely - They feel good about what Dr. Beekman did with the ballooning of the pulmonary valve (which will become the aortic valve) but if they feel they can make the valve better once they get in there they can make some adjustments (IF needed). 3. Then they will move over the coronary artery which is the trickiest part of the procedure. The Coronary artery is what supplies your heart with blood so it's crucial that that is a smooth and perfect transition. 4. They will switch the two artery (Arterial Switch). 5. They will close off the PDA.
Once they are done with all of that they will look at "how happy his heart is with the repair". If his heart doesn't seem happy then they will not close up his chest. He would come back to the CICU with what they call "open chest" and after a few days they would close his chest in his CICU room. They are also looking at his other organs and how they function especially the kidneys. He might have to be put on some sort dialysis if they feel his kidneys need help and protection. They are also leaving pacemaker wires in just in case his heart is beating in "funky rhythms".
This is the basics of what they are doing. I don't want to go into to much detail because it could take forever and you and I don't have that kind of time. So what to pray for?!
First, I'm still praying for healing! I know these are the plans of the experts and I realize that God has uniquely gifted them and what they do is truly miraculous. Judah's heart is the size of a strawberry and God gifted Dr. Manning with ability to surgically fix a heart that small.. thats crazy amazing!!! I know God CAN heal Judah without Dr. Manning but I also know that God is in control and whatever path He places us on tomorrow is what He has decided is best. I trust Him.
So if Judah has surgery then here are the needs to pray for: First pray over Dr. Manning and the entire team of nurses, doctors and anesthesiologist! May the Holy Spirit guide every decision and every move they make! Also, pray for Judah as he is being put on bypass. Pray that it is a smooth transition and that it goes better than they even expect with NO complications during or after he comes off! Pray over the entire operation! Pray that the valves and arteries are put into perfect order with NO complications! That the duct (PDA) would be tied off with NO complications. That they can patch the hole with NO complications. PRAY that his heart would be "happy" with the repair and function in a complete and perfect way with NO ISSUES!!! Again pray for a smooth transition OFF of the bypass with NO complications. Pray over his brain that there would be NO BLEEDS or complications of ANY kind!! No swelling, no damage - a perfect brain!! Also pray over his kidneys - it would be AMAZING if he did not need the dialysis and could do the work on his own without causing stress to his body or organs. Also pray that they would be able to close his chest after the operation. If they bring him back with an open chest then it will set his recovery time back even further. After surgery they monitor SO much!! Pray over every part of his body - that he would be STRONG and have a very speedy and safe recovery! A normal recovery for an Arterial Switch would be around 2 weeks but they think he might take longer since he had such a "rough start". I believe God can help him and make his recovery time miraculous! Pray that he would have NO BLEEDS in ANY PART OF HIS BODY and also that he would have no blood clots.
Thank you for standing with us the past 15 days!! God has shown himself REAL and ACTIVE! We are expecting for God to once again show up tomorrow - no matter what path God places us on tomorrow we are believing that He will be there every step of the way and that Judah will come through this and be a great testimony of His great faithfulness. Two Fridays ago God totally shocked us with how he showed up and blew us away with the results of the heart cath!! I believe if Judah has surgery tomorrow HE will show up again and shock us!
Tomorrow from 11am-7pm PLEASE stand with us! Pray with us! Believe with us! and PRAISE with us!! GOD IS GOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The Proud Mamma of a 2 week old KINGDOM builder!!
Saturday, April 28, 2012
Judah James Robinson (4/28/12) - The overview
A lot of you might not be familiar with our story so I thought I would share a VERY brief overview of the past few years.
Josh and I were blessed to have our first baby London Brooks Robinson on November 25, 2008. We got pregnant again and lost that baby at 12 weeks pregnant (May 2010). It was a very devastating time for us but God gave us strength and peace to carry on. Then we got pregnant again and I felt certain that we would not lose that baby but we did at 11 weeks pregnant (April 2011). Again it was very difficult because we really wanted to have another baby and of course anytime you lose a baby it's heart breaking. The Lord (like always) was so faithful to help us through that time. We did a lot of traveling during the summer of 2011 and we were SHOCKED to find out in August that we were pregnant again. Very guarded but very excited about this baby. Everything seemed to be going great and for the most part I even felt great (when I was pregnant with my daughter I was sick ALL the time).
On Friday November 18th we went to our Doctor and we were SO excited because we were finding out the gender of our baby. Long story short the ultra sound tech found some things she was concerned about - Our Doctor sent us to a specialist and luckily we only had to wait 3 hours! They got us in so fast thanks to Dr. Dorsey who is in my opinion the greatest OBGYN there is!
Dr. Bombys said our little baby had Dandy Walker but that is all we knew on the 18th. She sent us to Cincinnati Children's Fetal Care Center where I went through a long and stressful day of tests (November 27, 2011). After all the tests we met with a team of Doctors, Neonatologists, Cardiologists, Genetic Specialists and so on... They told us that Judah had Dandy Walker which can be mild or severe but there is no way of knowing until they get older. Dandy Walker is where the vermis (in the brain) is either missing or under developed. The vermis controls coordination and lots of older people have Dandy Walker and don't even know because they didn't use to do Ultra Sounds like we do these days. It can be so mild where it has no effect, it can make you clumsy, give you headaches, or it can be more severe but like I said there is no way of knowing until they start needing coordination skills.
They also said that Judah has Transposition of the Great Arteries which basically means that the Left ventricle that pumps the blue blood is flowing where the red blood (oxygenated blood) should be flowing and the Right (Red Blood) is flowing where the Blue blood should be flowing. Also they said he has Pulmonary Stenosis which is where the pulmonary valve is abnormal (it would kinda be like if you had a water hose and put your finger over half the hose - the water is forced out more quickly). They have never seen a person have transposition paired with just pulmonary stenosis so they told us they weren't sure what the best plan was and that they would have to "put their heads together to come up with the most intelligent plan".
My pregnancy went by quickly and I found myself wanting him to stay in my belly as long as possible! Our induction date was set for April 15th. They started the induction at 11pm, my water broke at 2am and he was here by 4:35am! He wasn't breathing when he came out and it was so quiet in the room I didn't know what was happening. I could see them working on him but no one was talking. I had to ask 4-5 times if he was alive and all my nurse would say was "he has a heart beat". God was there! He kept me so calm the entire time and that in itself was a miracle. It was also a miracle how fast he came because they didn't think he would tolerate labor and delivery because his heart rate was dropping after my contractions. But literally I went from 4cm and 60% to fully complete in minutes! Literally pushed for 12 minutes and he was here. They got him stable and took him to the NICU. He was transported over to Children's at 7:30 am.
I came over to Children's on a 4 hour pass to see him (3pm). He seemed to be doing so well! A Doctor came in at around 6:15 to say that he might be able to go home in a week or two and then they would want him to come back in a month or two for the Arterial Switch (Switch the arteries). Literally as she was talking his vitals started going crazy (6:30pm) - All of sudden there were about 25 people in his small room and pouring out into the hall way (We had the day shift workers here and the night crew that was coming on so it was double the people). I sat down and watched as they worked on my baby boy - for 3 minutes they did CPR - It seemed like 3 hours! He had went into cardiac arrest. Everything happened so fast but basically we decided to put him on ECMO because they had NO IDEA what caused him to arrest and they were concerned it could happen again and if it did it could be fatal. Within minutes they were preparing him for ECMO and we were asked to leave the room because it's basically considered a procedure and they need the room sterile (ECMO is a heart and lung bypass). While they were getting him ready he went into cardiac arrest again but this time they did CPR for 10-15 minutes. They got him on EMCO and started chilling his body to prevent any of his organs from being damaged (He would be cooled down for 48 hours). Walking back into the room that night just about took my breath away. There aren't words to express the feeling of helplessness I felt at that moment. Such a tiny baby surrounded by such big machines. The next day (Tuesday) was all about getting him stable and letting his body rest. Wednesday his lactate and glucose were crazy high (Glucose in the high 500's-600's and Lactate 18 - They wanted his glucose at 120-150 and his lactate below 2) they could not figure out why it was so high. It's not uncommon given the trauma that he had went through on Monday evening for these number to be elevated but not by this magnitude. That day seemed to be the day things shifted - We called on prayer warriors to stand with us and pray for Judah - Every single time they would test his glucose and Lactate they were dropping! By Thursday morning he was basically perfect with his glucose and lactate. On Wednesday night they started warming him back up and throughout the early morning hours on Thursday he had 3 seizures - two that lasted 30 seconds long and one that lasted 3 minutes. They told us on Thursday morning that there was severe brain damage and that he was not responsive at all and had no gag reflex. We with thousands of people went to prayer and by 4pm the head of neurology came back up to say "we looked at his CT scan on better screens and we feel optimistic".... GOD DID THAT! He said there was no way of knowing for sure without and MRI but he was on ECMO so they couldn't do an MRI.
Friday morning a team of Cardiologist met and decided the first thing they needed to do was a heart cath. Dr. Beekman came in and basically said they were going to look at the coronary artery first and take pictures of that to see if he was even a candidate for the arterial switch and in his words "if the coronary artery is abnormal then the options are not good". Second thing they were doing was ballooning the pulmonary valve (This is the valve that is like a water hose) and our biggest prayer with this is that there WOULD BE NO LEAKING!! The valve is kinda like a door - The door opens but doesn't open up all the way - so the balloon is like if you were to kick the door in - it would open freely but then you want the door to close all the way - NO LEAKS. Then they were going to look at the hole on the left side (that everyone has) and if it was to small they would balloon that and make it bigger. Seeing him transported to the Cath Lab while he was on ECMO was one of the scariest thing I've ever seen! Dr. Brad told the transport team before they left "one wrong move and you can kill this baby".... That is NOT something you want to hear!! It took 32 minutes to transport him down the hall! Kissing him at the door of the cath lab was heart breaking! I just wanted to rescue him! We went to the waiting room and waited... Well, the Coronary Artery was GOOD, they ballooned the pulmonary valve with "minimal leaking" (We're praying for NO LEAKING though) and also ballooned the hole. Dr. Beekman said it went better than his best expectation!! AND they had to turn off ECMO during the cath to get accurate pressures and he did so well that they decided to call the surgeons and TAKE HIM OFF ECMO for good!! We were so shocked but PRAISING God like you would not believe!! Since I've lost track of days I can't remember what day he had the MRI but all I do know is it came back NO BRAIN DAMAGE! Praise GOD!! The only thing they could see was that he had less blood circulation then they would want but he also had lower circulation to his body that same day.
The weekend and the beginning of the week were rather quiet and wonderful! Our little Champion was doing better and better every day. On Wednesday they were planning on taking the breathing tube out but then he had a jump in his glucose and lactate and they weren't sure why. So they put him back on a paralytic and of course WE PRAYED and those number came down. They were telling us they wanted the PDA (Ductus Arteriosus) to close and now they aren't sure if that's good or not... it's so confusing. From what I'm gathering most of the Doctor feel he needs a full repair and some feel they should just close the duct first then go back in later to do a full repair.
Some of you have been asking WHY Judah's heart is so complex - I am going to try to make this as simple as I can (if that is even possible) - With Transposition & Pulmonary Stenosis paired together it makes it kinda of difficult because if they do the Arterial Switch That means that his Pulmonary Valve would become is Aortic Valve and the Aortic Valve would become the Pulmonary Valve. They are concerned because your Aortic Valve pumps the blood to your whole body so it's important that that valve is good because it does a lot of work. The Pulmonary valve only pumps to your lungs so it doesn't have as far to travel and requires less work. Once he gets older they could put in a artificial valve but it's not an option as an infant.
Up here in the CICU (Cardiac Intensive Care Unit) you hear lots of crazy stories. Last week we heard about a kid who had an artificial valve put in and then his body actually grew a valve so they were going to take the fake one out... how cool is that! GOD IS GOOD!!
Here is where we are - We Trust God! This is by far the HARDEST thing I have ever gone through but I know God loves Judah far more than I ever could! Sometimes you just have to remind yourself that God knows whats best even when it hurts the worst! WE BELIEVE that GOD CAN heal our son! We believe that he will! I don't know how or when but I know God is ABLE and I'm standing firm in the belief that GOD will show up and show off :) God has already done so much in the past 12 days and I believe He is going to continue to do more! We have the Firey Furnace Faith - We believe that God is able to deliver us but even if He doesn't we will not bow!
God is not allowing this to happen as a punishment but instead He is drawing His people closer to him. He is changing hearts and lives and many people have come to know Jesus through Judah's story and he's only 12 days old. Even before he was born people were being changed by what God was doing in and through our little family. We are not strong in ourselves but strong in the Lord. We have no strength in ourselves but ALL our strength has come from the Lord. We're nothing special and yet God is using our weakness, our trials and our suffering and bringing good things to pass! Our lives are not about us and so often we get focused on it being about us... our lives should be about one thing - TO MAKE HIM KNOWN! Thats what God is doing here - He is being KNOWN! Even though this is a hard road to travel we are blessed by all that God is doing in your lives! It gives us great joy to hear about how your life has been changed by GOD through Judah's story! May God continue to draw his people closer to him and reveal himself to the world! Praying, believing and standing firm in GOD!!
Thank you to everyone who is standing with us for Judah's healing! I don't know how God is going to deliver this healing but I'm praying it's through his own hands! If God allows Judah to have surgery then God will be there to bring him through it. God has gifted these Doctors and Surgeons and blessed them with ability to help others but like I said - Our God is able - God do your thing :D
The Proud Mamma of The Strong and Mighty Judah,
Jillian
Josh and I were blessed to have our first baby London Brooks Robinson on November 25, 2008. We got pregnant again and lost that baby at 12 weeks pregnant (May 2010). It was a very devastating time for us but God gave us strength and peace to carry on. Then we got pregnant again and I felt certain that we would not lose that baby but we did at 11 weeks pregnant (April 2011). Again it was very difficult because we really wanted to have another baby and of course anytime you lose a baby it's heart breaking. The Lord (like always) was so faithful to help us through that time. We did a lot of traveling during the summer of 2011 and we were SHOCKED to find out in August that we were pregnant again. Very guarded but very excited about this baby. Everything seemed to be going great and for the most part I even felt great (when I was pregnant with my daughter I was sick ALL the time).
On Friday November 18th we went to our Doctor and we were SO excited because we were finding out the gender of our baby. Long story short the ultra sound tech found some things she was concerned about - Our Doctor sent us to a specialist and luckily we only had to wait 3 hours! They got us in so fast thanks to Dr. Dorsey who is in my opinion the greatest OBGYN there is!
Dr. Bombys said our little baby had Dandy Walker but that is all we knew on the 18th. She sent us to Cincinnati Children's Fetal Care Center where I went through a long and stressful day of tests (November 27, 2011). After all the tests we met with a team of Doctors, Neonatologists, Cardiologists, Genetic Specialists and so on... They told us that Judah had Dandy Walker which can be mild or severe but there is no way of knowing until they get older. Dandy Walker is where the vermis (in the brain) is either missing or under developed. The vermis controls coordination and lots of older people have Dandy Walker and don't even know because they didn't use to do Ultra Sounds like we do these days. It can be so mild where it has no effect, it can make you clumsy, give you headaches, or it can be more severe but like I said there is no way of knowing until they start needing coordination skills.
They also said that Judah has Transposition of the Great Arteries which basically means that the Left ventricle that pumps the blue blood is flowing where the red blood (oxygenated blood) should be flowing and the Right (Red Blood) is flowing where the Blue blood should be flowing. Also they said he has Pulmonary Stenosis which is where the pulmonary valve is abnormal (it would kinda be like if you had a water hose and put your finger over half the hose - the water is forced out more quickly). They have never seen a person have transposition paired with just pulmonary stenosis so they told us they weren't sure what the best plan was and that they would have to "put their heads together to come up with the most intelligent plan".
My pregnancy went by quickly and I found myself wanting him to stay in my belly as long as possible! Our induction date was set for April 15th. They started the induction at 11pm, my water broke at 2am and he was here by 4:35am! He wasn't breathing when he came out and it was so quiet in the room I didn't know what was happening. I could see them working on him but no one was talking. I had to ask 4-5 times if he was alive and all my nurse would say was "he has a heart beat". God was there! He kept me so calm the entire time and that in itself was a miracle. It was also a miracle how fast he came because they didn't think he would tolerate labor and delivery because his heart rate was dropping after my contractions. But literally I went from 4cm and 60% to fully complete in minutes! Literally pushed for 12 minutes and he was here. They got him stable and took him to the NICU. He was transported over to Children's at 7:30 am.
I came over to Children's on a 4 hour pass to see him (3pm). He seemed to be doing so well! A Doctor came in at around 6:15 to say that he might be able to go home in a week or two and then they would want him to come back in a month or two for the Arterial Switch (Switch the arteries). Literally as she was talking his vitals started going crazy (6:30pm) - All of sudden there were about 25 people in his small room and pouring out into the hall way (We had the day shift workers here and the night crew that was coming on so it was double the people). I sat down and watched as they worked on my baby boy - for 3 minutes they did CPR - It seemed like 3 hours! He had went into cardiac arrest. Everything happened so fast but basically we decided to put him on ECMO because they had NO IDEA what caused him to arrest and they were concerned it could happen again and if it did it could be fatal. Within minutes they were preparing him for ECMO and we were asked to leave the room because it's basically considered a procedure and they need the room sterile (ECMO is a heart and lung bypass). While they were getting him ready he went into cardiac arrest again but this time they did CPR for 10-15 minutes. They got him on EMCO and started chilling his body to prevent any of his organs from being damaged (He would be cooled down for 48 hours). Walking back into the room that night just about took my breath away. There aren't words to express the feeling of helplessness I felt at that moment. Such a tiny baby surrounded by such big machines. The next day (Tuesday) was all about getting him stable and letting his body rest. Wednesday his lactate and glucose were crazy high (Glucose in the high 500's-600's and Lactate 18 - They wanted his glucose at 120-150 and his lactate below 2) they could not figure out why it was so high. It's not uncommon given the trauma that he had went through on Monday evening for these number to be elevated but not by this magnitude. That day seemed to be the day things shifted - We called on prayer warriors to stand with us and pray for Judah - Every single time they would test his glucose and Lactate they were dropping! By Thursday morning he was basically perfect with his glucose and lactate. On Wednesday night they started warming him back up and throughout the early morning hours on Thursday he had 3 seizures - two that lasted 30 seconds long and one that lasted 3 minutes. They told us on Thursday morning that there was severe brain damage and that he was not responsive at all and had no gag reflex. We with thousands of people went to prayer and by 4pm the head of neurology came back up to say "we looked at his CT scan on better screens and we feel optimistic".... GOD DID THAT! He said there was no way of knowing for sure without and MRI but he was on ECMO so they couldn't do an MRI.
Friday morning a team of Cardiologist met and decided the first thing they needed to do was a heart cath. Dr. Beekman came in and basically said they were going to look at the coronary artery first and take pictures of that to see if he was even a candidate for the arterial switch and in his words "if the coronary artery is abnormal then the options are not good". Second thing they were doing was ballooning the pulmonary valve (This is the valve that is like a water hose) and our biggest prayer with this is that there WOULD BE NO LEAKING!! The valve is kinda like a door - The door opens but doesn't open up all the way - so the balloon is like if you were to kick the door in - it would open freely but then you want the door to close all the way - NO LEAKS. Then they were going to look at the hole on the left side (that everyone has) and if it was to small they would balloon that and make it bigger. Seeing him transported to the Cath Lab while he was on ECMO was one of the scariest thing I've ever seen! Dr. Brad told the transport team before they left "one wrong move and you can kill this baby".... That is NOT something you want to hear!! It took 32 minutes to transport him down the hall! Kissing him at the door of the cath lab was heart breaking! I just wanted to rescue him! We went to the waiting room and waited... Well, the Coronary Artery was GOOD, they ballooned the pulmonary valve with "minimal leaking" (We're praying for NO LEAKING though) and also ballooned the hole. Dr. Beekman said it went better than his best expectation!! AND they had to turn off ECMO during the cath to get accurate pressures and he did so well that they decided to call the surgeons and TAKE HIM OFF ECMO for good!! We were so shocked but PRAISING God like you would not believe!! Since I've lost track of days I can't remember what day he had the MRI but all I do know is it came back NO BRAIN DAMAGE! Praise GOD!! The only thing they could see was that he had less blood circulation then they would want but he also had lower circulation to his body that same day.
The weekend and the beginning of the week were rather quiet and wonderful! Our little Champion was doing better and better every day. On Wednesday they were planning on taking the breathing tube out but then he had a jump in his glucose and lactate and they weren't sure why. So they put him back on a paralytic and of course WE PRAYED and those number came down. They were telling us they wanted the PDA (Ductus Arteriosus) to close and now they aren't sure if that's good or not... it's so confusing. From what I'm gathering most of the Doctor feel he needs a full repair and some feel they should just close the duct first then go back in later to do a full repair.
Some of you have been asking WHY Judah's heart is so complex - I am going to try to make this as simple as I can (if that is even possible) - With Transposition & Pulmonary Stenosis paired together it makes it kinda of difficult because if they do the Arterial Switch That means that his Pulmonary Valve would become is Aortic Valve and the Aortic Valve would become the Pulmonary Valve. They are concerned because your Aortic Valve pumps the blood to your whole body so it's important that that valve is good because it does a lot of work. The Pulmonary valve only pumps to your lungs so it doesn't have as far to travel and requires less work. Once he gets older they could put in a artificial valve but it's not an option as an infant.
Up here in the CICU (Cardiac Intensive Care Unit) you hear lots of crazy stories. Last week we heard about a kid who had an artificial valve put in and then his body actually grew a valve so they were going to take the fake one out... how cool is that! GOD IS GOOD!!
Here is where we are - We Trust God! This is by far the HARDEST thing I have ever gone through but I know God loves Judah far more than I ever could! Sometimes you just have to remind yourself that God knows whats best even when it hurts the worst! WE BELIEVE that GOD CAN heal our son! We believe that he will! I don't know how or when but I know God is ABLE and I'm standing firm in the belief that GOD will show up and show off :) God has already done so much in the past 12 days and I believe He is going to continue to do more! We have the Firey Furnace Faith - We believe that God is able to deliver us but even if He doesn't we will not bow!
God is not allowing this to happen as a punishment but instead He is drawing His people closer to him. He is changing hearts and lives and many people have come to know Jesus through Judah's story and he's only 12 days old. Even before he was born people were being changed by what God was doing in and through our little family. We are not strong in ourselves but strong in the Lord. We have no strength in ourselves but ALL our strength has come from the Lord. We're nothing special and yet God is using our weakness, our trials and our suffering and bringing good things to pass! Our lives are not about us and so often we get focused on it being about us... our lives should be about one thing - TO MAKE HIM KNOWN! Thats what God is doing here - He is being KNOWN! Even though this is a hard road to travel we are blessed by all that God is doing in your lives! It gives us great joy to hear about how your life has been changed by GOD through Judah's story! May God continue to draw his people closer to him and reveal himself to the world! Praying, believing and standing firm in GOD!!
Thank you to everyone who is standing with us for Judah's healing! I don't know how God is going to deliver this healing but I'm praying it's through his own hands! If God allows Judah to have surgery then God will be there to bring him through it. God has gifted these Doctors and Surgeons and blessed them with ability to help others but like I said - Our God is able - God do your thing :D
The Proud Mamma of The Strong and Mighty Judah,
Jillian
Sunday, April 15, 2012
Update on Judah 4/15/12 (My last Pregnancy Blog)
Can't believe the time has come and I'm lying in the hospital bed waiting for Judah to arrive. It seems so surreal that he'll be here some time tomorrow. It's been a long journey but we are grateful and abundantly blessed to have the opportunity to be parents to another little person!
It might seem strange but I don't exactly feel excited or nervous. I've been praying that the Lord would calm my emotions and any worries or fears that I might have and so far it seems like He is answering those prayers! I know the challenges we faces and all the unknowns could be overwhelming but my God is bigger! He is greater!
I got to the Hospital around 8:30p and by 10:30p things seemed to be in motion. They started me on my first round of meds. Instead of doing the cervical medicine and pitocin right away I'm just doing the cervical medicine and seeing how it goes. I'll get that every 4 hours until I hit a certain point and then I could start on pitocin or I might just be going good on my own with no need to do the pitocin.
Pretty much as soon as we got to our room tonight a Doctor from the NICU came over. Again she went over the plan... they are good about that here. It was actually kinda cool because she wasn't called over but she knew we were coming in tonight and when she saw our names come across the screen she came straight over. It's cool to know that they are prepared and are fully familiar with our case before we ever come in.
The Plan (according to the Doctors with commentary from yours truly ha.):
I plan to deliver vaginally which is called a "natural delivery" - I don't use that term because lots of people think that "natural delivery" means without any medications but it actually just means vaginal delivery. I do plan on having an epidural and honestly wouldn't think about not having one lol. I don't want to experience the curse! I want to enjoy delivery! I had a fabulous labor and delivery with London and I owe that to the epi :)
After delivery we hope that Judah is crying and breathing on his own! That would make things a lot better and also make it so that things aren't so crazy. If he isn't they will have to do a breathing tube right away to help him. There will be a large group of doctors and nurses in the room at the time of delivery and once they get him stable and see how he is adjusting to life outside the womb I will hopefully get to see him (He will be in my delivery room during this time). After that they will take him over to the NICU where he will be "packaged up" for Children's Hospital transport team. While he is in the UC NICU he will have 2 IV lines put in his belly button. One that will be giving him fluid, nutrients and a medicine to keep a valve open in his heart and another that will monitor his blood pressure. Once he is ready for transport they will bring him back to my room so I can see him before they transport him to Children's. Josh and I will hopefully be facetiming the whole time so I can feel apart of everything. It's been very difficult thinking about not being able to see him or know what is happening and it just dawned on me the other day that we could facetime so I can see everything just like Josh is! It was a God thought!! I asked the NICU Doctor and she said she thought that would be fine but she couldn't speak for Children's Hospital. Hopefully we don't get any resistance in this area because it has given me a lot of joy. Once he gets to Children's they will run lots of tests on him and we will have a clear plan of action given to us at that time. Until then thats all we got.
The Plan (according to my faith):
I plan to deliver vaginally with the help of my epidural haha.
Judah will be breathing and screaming away just like every other baby! He will still be taken to the NICU and transported to Children's because they have to run tests to give him a clean bill of health and they would never take any chances by hesitating even if they thought he was healed (which they most likely wouldn't seeing as how you can see the heart without a scan). Once he gets to the CICU at Children's they will run all the necessary tests and be found HEALED.
Now, I would like to say that no matter what happens in the days to come we trust in the mighty hand of God! We know that God is in control even when things seem out of control! Faith is not for the faint of heart. It's standing in the face of impossibility and saying I TRUST GOD - I BELIEVE GOD IS ABLE and NO MATTER WHAT I will NOT back down! That doesn't mean everything is going to go our way because lets face it the bible doesn't say "my will be done" it says LORD Your will be done. God ALWAYS has the master plan and I don't have to understand that plan to trust it and the reason for that is simple... This life is not about me. We walk through life thinking it is but it's not! My life and all that I am has one purpose - To make HIM known! When you come to that kind of realization then it gives you a supernatural empowerment to face challenges and adversity with courage and strength because you know He is with you. Does my humanity shine through - of course! God made us with a wide range of emotions and Jesus said it best when he said "Keep watch and pray.... For the body is weak but the spirit is willing".
Anyway, I want to take this time to thank you all for praying and believing with us! It's meant the world to us and we can't express our gratefulness! We will do our best to keep you updated on everything because we know that so many of you are invested into Judah with endless praying and fasting! We couldn't be more grateful for all the encouragement and support you all have given us! Truly! Thank you so much!!
SIDE NOTE: It's taken me an hour to write this and during that time Judah is not liking the contractions. His heart rate has dropped several times and he dropped off completely on the monitor when my contraction were close together. If this continues they will do a c-section because they don't know if his heart can handle vaginal delivery. This would make a much harder recovery for me and also make it much longer for me to see Judah. PLEASE PRAY FOR HIS LITTLE HEART!!!!! Thanks everyone!!
It might seem strange but I don't exactly feel excited or nervous. I've been praying that the Lord would calm my emotions and any worries or fears that I might have and so far it seems like He is answering those prayers! I know the challenges we faces and all the unknowns could be overwhelming but my God is bigger! He is greater!
I got to the Hospital around 8:30p and by 10:30p things seemed to be in motion. They started me on my first round of meds. Instead of doing the cervical medicine and pitocin right away I'm just doing the cervical medicine and seeing how it goes. I'll get that every 4 hours until I hit a certain point and then I could start on pitocin or I might just be going good on my own with no need to do the pitocin.
Pretty much as soon as we got to our room tonight a Doctor from the NICU came over. Again she went over the plan... they are good about that here. It was actually kinda cool because she wasn't called over but she knew we were coming in tonight and when she saw our names come across the screen she came straight over. It's cool to know that they are prepared and are fully familiar with our case before we ever come in.
The Plan (according to the Doctors with commentary from yours truly ha.):
I plan to deliver vaginally which is called a "natural delivery" - I don't use that term because lots of people think that "natural delivery" means without any medications but it actually just means vaginal delivery. I do plan on having an epidural and honestly wouldn't think about not having one lol. I don't want to experience the curse! I want to enjoy delivery! I had a fabulous labor and delivery with London and I owe that to the epi :)
After delivery we hope that Judah is crying and breathing on his own! That would make things a lot better and also make it so that things aren't so crazy. If he isn't they will have to do a breathing tube right away to help him. There will be a large group of doctors and nurses in the room at the time of delivery and once they get him stable and see how he is adjusting to life outside the womb I will hopefully get to see him (He will be in my delivery room during this time). After that they will take him over to the NICU where he will be "packaged up" for Children's Hospital transport team. While he is in the UC NICU he will have 2 IV lines put in his belly button. One that will be giving him fluid, nutrients and a medicine to keep a valve open in his heart and another that will monitor his blood pressure. Once he is ready for transport they will bring him back to my room so I can see him before they transport him to Children's. Josh and I will hopefully be facetiming the whole time so I can feel apart of everything. It's been very difficult thinking about not being able to see him or know what is happening and it just dawned on me the other day that we could facetime so I can see everything just like Josh is! It was a God thought!! I asked the NICU Doctor and she said she thought that would be fine but she couldn't speak for Children's Hospital. Hopefully we don't get any resistance in this area because it has given me a lot of joy. Once he gets to Children's they will run lots of tests on him and we will have a clear plan of action given to us at that time. Until then thats all we got.
The Plan (according to my faith):
I plan to deliver vaginally with the help of my epidural haha.
Judah will be breathing and screaming away just like every other baby! He will still be taken to the NICU and transported to Children's because they have to run tests to give him a clean bill of health and they would never take any chances by hesitating even if they thought he was healed (which they most likely wouldn't seeing as how you can see the heart without a scan). Once he gets to the CICU at Children's they will run all the necessary tests and be found HEALED.
Now, I would like to say that no matter what happens in the days to come we trust in the mighty hand of God! We know that God is in control even when things seem out of control! Faith is not for the faint of heart. It's standing in the face of impossibility and saying I TRUST GOD - I BELIEVE GOD IS ABLE and NO MATTER WHAT I will NOT back down! That doesn't mean everything is going to go our way because lets face it the bible doesn't say "my will be done" it says LORD Your will be done. God ALWAYS has the master plan and I don't have to understand that plan to trust it and the reason for that is simple... This life is not about me. We walk through life thinking it is but it's not! My life and all that I am has one purpose - To make HIM known! When you come to that kind of realization then it gives you a supernatural empowerment to face challenges and adversity with courage and strength because you know He is with you. Does my humanity shine through - of course! God made us with a wide range of emotions and Jesus said it best when he said "Keep watch and pray.... For the body is weak but the spirit is willing".
Anyway, I want to take this time to thank you all for praying and believing with us! It's meant the world to us and we can't express our gratefulness! We will do our best to keep you updated on everything because we know that so many of you are invested into Judah with endless praying and fasting! We couldn't be more grateful for all the encouragement and support you all have given us! Truly! Thank you so much!!
SIDE NOTE: It's taken me an hour to write this and during that time Judah is not liking the contractions. His heart rate has dropped several times and he dropped off completely on the monitor when my contraction were close together. If this continues they will do a c-section because they don't know if his heart can handle vaginal delivery. This would make a much harder recovery for me and also make it much longer for me to see Judah. PLEASE PRAY FOR HIS LITTLE HEART!!!!! Thanks everyone!!
Monday, March 19, 2012
Update on Judah 3/18/12
I feel like today was such a long day. Judah did well on all his testings: Practicing breathing, moving, heart rate and so on. The goal is to stay pregnant as long as possible and today they set up all our plans for our induction date. As of right now I will be inducted on Sunday April 15th. This is a great thing because 1. It gives me more time to prepare and 2. It gives him more time so that his lungs are fully developed. Obviously this is a tentative date and could change based on lots of different variables but the main things that would change this date is if I go into labor or if he would be showing signs of distress which is partly why I have an ultra sound every week - They monitor him rather closely.
After our appointment today we took a tour of the Labor & Delivery Unit and the NICU. I think it was harder than I expected. Judy (the head nurse) was going over what everything would look like and it just became so real. She said that as soon as he comes into the world he will be brought over to this tiny little bed in the room and that there would be so many people around him that I probably wouldn't be able to see him. As soon as he is breathing and heart rate is established they would take him straight to the NICU - Without me seeing him or even touching him :*( He will be in the NICU at University Hospital for about and hour or two - thats where they will get him hooked up to all the necessary tubes, iv's and meds and then a transport team from Children's will come over and get him but before they take him to Children's the will bring him by my recovery room so that I can see him and say bye and hopefully at least touch him. From that point he will be taken to Children's CICU where they will do testing on him. Josh will be with him so I'll stay connected via phone. If all goes to plan and I can do a vaginal delivery then I should be able to go over to Children's within 5-7 hours after delivery.
As of right now we're trying to figure out accommodations after I am released from the hospital (1-2 days). Judy mentioned the Ronald McDonald House (kinda like Dorm rooms with common areas) which is located directly across the street or we could go with Extended Stay America which isn't as close but it give privacy (more like a hotel/Apartment style). Financially the Ronald McDonald house makes more sense but we're looking into both options because I personally feel like I will want/need more privacy. These are the times I wish I was a wealthy lol. Oh well! God will work it out and put us in the right place.
It was challenging to listen to "the plan" and I thought I could hold it together but unfortunately I wasn't that strong. I think seeing the delivery room and seeing the tiny little bed just made me realize how hard it's going to be. I need prayer specifically over the time of delivery. I want it to be as peaceful as possible seeing as how birth it's such a traumatic experience for babies anyway plus all the extra stuff my poor little guy has to endure. I want it to be calm, quiet and peaceful. I don't want to lose it and be a wreck and truthfully only God can help me with this.
That was our day for the most part. I do feel like we got a lot of questions answered and I am for sure feeling more prepared as far as knowing what to expect (somewhat). The hard thing is that everything could change so I'm trying not to be to invested in any "plan" other than the plan of having a baby lol. God is in control. Simple as that. Doesn't make things "easy" but it sure does make things better.
Thanks for reading and most importantly thanks for praying and believing with us! Still praying and believing that he will be healed. Notice I didn't mention any surgery or operations of any kind because I'm believing that once they get him to CICU and they do the echo that they will see a healed heart.
After our appointment today we took a tour of the Labor & Delivery Unit and the NICU. I think it was harder than I expected. Judy (the head nurse) was going over what everything would look like and it just became so real. She said that as soon as he comes into the world he will be brought over to this tiny little bed in the room and that there would be so many people around him that I probably wouldn't be able to see him. As soon as he is breathing and heart rate is established they would take him straight to the NICU - Without me seeing him or even touching him :*( He will be in the NICU at University Hospital for about and hour or two - thats where they will get him hooked up to all the necessary tubes, iv's and meds and then a transport team from Children's will come over and get him but before they take him to Children's the will bring him by my recovery room so that I can see him and say bye and hopefully at least touch him. From that point he will be taken to Children's CICU where they will do testing on him. Josh will be with him so I'll stay connected via phone. If all goes to plan and I can do a vaginal delivery then I should be able to go over to Children's within 5-7 hours after delivery.
As of right now we're trying to figure out accommodations after I am released from the hospital (1-2 days). Judy mentioned the Ronald McDonald House (kinda like Dorm rooms with common areas) which is located directly across the street or we could go with Extended Stay America which isn't as close but it give privacy (more like a hotel/Apartment style). Financially the Ronald McDonald house makes more sense but we're looking into both options because I personally feel like I will want/need more privacy. These are the times I wish I was a wealthy lol. Oh well! God will work it out and put us in the right place.
It was challenging to listen to "the plan" and I thought I could hold it together but unfortunately I wasn't that strong. I think seeing the delivery room and seeing the tiny little bed just made me realize how hard it's going to be. I need prayer specifically over the time of delivery. I want it to be as peaceful as possible seeing as how birth it's such a traumatic experience for babies anyway plus all the extra stuff my poor little guy has to endure. I want it to be calm, quiet and peaceful. I don't want to lose it and be a wreck and truthfully only God can help me with this.
That was our day for the most part. I do feel like we got a lot of questions answered and I am for sure feeling more prepared as far as knowing what to expect (somewhat). The hard thing is that everything could change so I'm trying not to be to invested in any "plan" other than the plan of having a baby lol. God is in control. Simple as that. Doesn't make things "easy" but it sure does make things better.
Thanks for reading and most importantly thanks for praying and believing with us! Still praying and believing that he will be healed. Notice I didn't mention any surgery or operations of any kind because I'm believing that once they get him to CICU and they do the echo that they will see a healed heart.
Monday, March 5, 2012
Update on Judah 3/5/12
Today we went back to cincy for our weekly checkup. There were several areas that I was praying for outside of our usual prayer for healing of Judah. One, that my fluid levels stay between the normal range (8-25). Two, that Judah's growth isn't so rapid that they make me take my 3rd glucose test. Three, that we wouldn't be scheduled for an induction before Easter.
For those of you wondering what I mean by "fluid levels" I mean the amniotic fluid surrounding Judah... a month ago we were told mine was to high and if it didn't decrease then my induction date could be set for 4/2 (37 weeks). They recommended a diabetic diet based on Judah's size and my high fluid levels. Well, I did of course what most people do and went home and googled "high amniotic fluid" and I freaked myself out. I was so overwhelmed and to be honest and emotional wreck about it. So I started my new diet and I'm not gonna lie it has been a massive challenge! The positive, as most of you know is that I've only gained 1 pound in 35 days. So back to the story, 3 weeks ago my fluid levels were at 27. Then 2 weeks ago my fluid levels were at 27.8 then last week my fluid levels were down to 22 (They want it between 8-25)! Obviously I was excited to hear that it had dropped since this was a huge concern for me! Today my fluid levels were up a bit at 25.5 and as long as it doesn't keep going up then my induction date will most likely be after 4/9 :D Excessive fluid can bring extra complications so please be praying that mine stay within the normal range! We don't need any extra "complications".
Judah weighed in today at 5lbs 6oz which means that even though he is still "big" for his age he isn't gaining weight at the same pace! This is really great! We want him to be a good size but his weight today made it so they didn't make me retest for gestational diabetes and also they said he looked good in size which is a first. He is doing everything he is suppose to be doing and as far as he is concerned he doesn't have a problem in the world... he's just perfect.
We met a new Doctor today who we absolutely loved! Please pray that he is the delivering doctor! He was so kind and humble and introduced himself as "Jim"- thats a rarity... He's the first one that didn't put the "Doctor" in front of his name.
As of right now everything looks good and we are hopefully planning for an induction after Easter. The Doctors did mention that with higher fluid I could end up going into labor before and if I do I need to call the head nurse as soon as we were on our way because there are so many specialists that will need to be called in for his delivery and if I felt like I can't make the drive to go to my local hospital and have them transport me to Cincy... it all seems so dramatic! She also mentioned that there might be some concern for me to have a vaginal delivery but I'm praying she is wrong. We did ask the head Doctor in Cardiology at Children's and he said that it would be fine but I'm not sure if that changed since he had to talk to his colleagues about Judah's case. I really do desire to have a vaginal delivery and it would make my recovery quicker. If (God forbid) I had to have a c-section it would be even longer that I would be away from Judah if God doesn't heal him. With vaginal delivery I would be able to see him (where ever he may be) within a couple hours.
Please pray for me as I put together somewhat of a birth plan. It's been an emotional roller coaster and the thought of not being able to see Judah for hours after delivery is seriously breaking my heart. I know many parents out there have gone through similar situations and they made it through just fine but I can only experience my life and walk in my own shoes so forgive me if I don't necessarily feel "comforted" by your stories. They are encouraging but in that moment I will not be thinking of you and your story... I'll be thinking about my baby and how badly I want to hold him or even just see him.
Again believing for God to intervene and show His glory. I know many people who have no faith in God and think I'm crazy for believing in Him for this kind of miracle but I KNOW my God is ABLE. I've seen the power of God in my own life and the lives of my loved ones. If God doesn't heal Judah that doesn't make Him less powerful or less mighty it just means there is purpose beyond our scope of understanding. I trust God with all I am and all I have... I know He provides the strength, provision and grace to endure any trail. There is no one like Him. Proud to be His and honored to call Him mine.
For those of you wondering what I mean by "fluid levels" I mean the amniotic fluid surrounding Judah... a month ago we were told mine was to high and if it didn't decrease then my induction date could be set for 4/2 (37 weeks). They recommended a diabetic diet based on Judah's size and my high fluid levels. Well, I did of course what most people do and went home and googled "high amniotic fluid" and I freaked myself out. I was so overwhelmed and to be honest and emotional wreck about it. So I started my new diet and I'm not gonna lie it has been a massive challenge! The positive, as most of you know is that I've only gained 1 pound in 35 days. So back to the story, 3 weeks ago my fluid levels were at 27. Then 2 weeks ago my fluid levels were at 27.8 then last week my fluid levels were down to 22 (They want it between 8-25)! Obviously I was excited to hear that it had dropped since this was a huge concern for me! Today my fluid levels were up a bit at 25.5 and as long as it doesn't keep going up then my induction date will most likely be after 4/9 :D Excessive fluid can bring extra complications so please be praying that mine stay within the normal range! We don't need any extra "complications".
Judah weighed in today at 5lbs 6oz which means that even though he is still "big" for his age he isn't gaining weight at the same pace! This is really great! We want him to be a good size but his weight today made it so they didn't make me retest for gestational diabetes and also they said he looked good in size which is a first. He is doing everything he is suppose to be doing and as far as he is concerned he doesn't have a problem in the world... he's just perfect.
We met a new Doctor today who we absolutely loved! Please pray that he is the delivering doctor! He was so kind and humble and introduced himself as "Jim"- thats a rarity... He's the first one that didn't put the "Doctor" in front of his name.
As of right now everything looks good and we are hopefully planning for an induction after Easter. The Doctors did mention that with higher fluid I could end up going into labor before and if I do I need to call the head nurse as soon as we were on our way because there are so many specialists that will need to be called in for his delivery and if I felt like I can't make the drive to go to my local hospital and have them transport me to Cincy... it all seems so dramatic! She also mentioned that there might be some concern for me to have a vaginal delivery but I'm praying she is wrong. We did ask the head Doctor in Cardiology at Children's and he said that it would be fine but I'm not sure if that changed since he had to talk to his colleagues about Judah's case. I really do desire to have a vaginal delivery and it would make my recovery quicker. If (God forbid) I had to have a c-section it would be even longer that I would be away from Judah if God doesn't heal him. With vaginal delivery I would be able to see him (where ever he may be) within a couple hours.
Please pray for me as I put together somewhat of a birth plan. It's been an emotional roller coaster and the thought of not being able to see Judah for hours after delivery is seriously breaking my heart. I know many parents out there have gone through similar situations and they made it through just fine but I can only experience my life and walk in my own shoes so forgive me if I don't necessarily feel "comforted" by your stories. They are encouraging but in that moment I will not be thinking of you and your story... I'll be thinking about my baby and how badly I want to hold him or even just see him.
Again believing for God to intervene and show His glory. I know many people who have no faith in God and think I'm crazy for believing in Him for this kind of miracle but I KNOW my God is ABLE. I've seen the power of God in my own life and the lives of my loved ones. If God doesn't heal Judah that doesn't make Him less powerful or less mighty it just means there is purpose beyond our scope of understanding. I trust God with all I am and all I have... I know He provides the strength, provision and grace to endure any trail. There is no one like Him. Proud to be His and honored to call Him mine.
Monday, February 20, 2012
Update on Judah 2/20/12
Today we had our last fetal echo until Judah arrives. I'm not going to lie, I was steadfastly hoping and praying for a clean bill of health. It took 2 hours for the fetal echo - I knew something was either wrong or confirming my hope of healing because 3 different people came in to do the echo at different times. The last Doctor who came in was the head of the department and the first one to diagnose Judah with Transposition of the Great Arteries. He told us that the aortic valve is thickened and (if God doesn't heal him) it will complicate the surgical plans. The reason being is because they will have to switch the valves at the same time that they switch the ventricles and there are a lot of factors that go into the switching of the valves. One being, they must be similar in size for the switch to be easy... These things are all up in the air until he arrives. We also found out today that the Doctors at Children's have never seen Transposition paired with the thickening of the valves and since they have never had any previous cases they have to collaborate with their colleagues to come up with "the most intelligent plan". Also, they are thinking he will need even more immediate attention after delivery than expected. In the words of one of the Doctors "By immediate we mean as soon as he is delivered we will have some there to do the balloon procedure"... This means that I wouldn't get to see him after delivery which will practically rip my heart out. We also found out, how great of a miracle it is that they even found that he has Transpositions in the first place because Transposition can look like a completely normal heart at the right angle. Originally we went down to Children's because of Dandy Walker but it was the heart that has stole the show since then. We haven't actually heard them even talk about the brain since November 27th. It might be strange but I do find encouragement when the Doctors bring in other Doctors to look at Judah's heart and teach them how to detect Transposition. It's a comfort to know that people are learning from Judah and if that can somehow translate into other babies being helped then that is wonderful. So in short the fetal echo showed us today that Judah has a very special heart.
After the echo we went for my weekly check up at University Hospital. Today I decided I was going to ask about the brain since we haven't heard anything for several months. They said the brain looks completely normal except where the cerebellum and vermis are located. We were told in November that he didn't have a vermis. Today the Doctor thinks she saw the vermis and that it was just under developed. This was all really great news. There is no extra fluid in the brain, everything else that should be present is there and Lord willing GOD is growing a vermis! We also found out that he is 4lbs and 12oz and in the 93rd percentile. I still have excess fluid and although my reduced carb diet is helping my weight it doesn't seem to be decreasing the fluid or helping Judah not gain so much weight. In two weeks if he is still gaining weight at this rapid pace I have to do another glucose test (the 3rd one during this pregnancy) to rule out gestational diabetes (again).
I feel emotionally drained. I was talking to my sister about everything and she said "you just have to let go and let God"... The things is, I don't feel like I'm holding on or trying to control things. I feel like I have "let go" but that I'm desperate for God to move! Emotionally I can't control myself at this time which can be a tad frustrating. I feel like my heart is ripped open and I'm bare before the Lord begging for Him to heal my son. I KNOW God will have His way and that's all I desire but everything inside me prays, hopes and believes that His way will be complete healing.
In all honestly, I'm a pastor and I thought I knew all the "right things to say" but going through this journey has made me realize that sometimes the "right thing" is to say nothing at all. To pray, to love and to just be there. We believe and we hope for things we can not see but in the end all we want is God's will. Those can be scary words to say because God's will is not always peaches and cornbread. Sometimes the journey is hard and dangerous and certainly narrow... it's not always "safe" but when we rely on the Holy Spirit he becomes our light, our way and we have strength to walk the journey even when we are barely hanging on. He is all the strength we need! He is the portion we feel like we lack and He is the grace to endure anything that comes our way.
We thank each and every one of you for your prayers and support! Now more than ever my whole soul cries out for a miracle and I appreciate every person who stands in agreement with us! We love you all!
After the echo we went for my weekly check up at University Hospital. Today I decided I was going to ask about the brain since we haven't heard anything for several months. They said the brain looks completely normal except where the cerebellum and vermis are located. We were told in November that he didn't have a vermis. Today the Doctor thinks she saw the vermis and that it was just under developed. This was all really great news. There is no extra fluid in the brain, everything else that should be present is there and Lord willing GOD is growing a vermis! We also found out that he is 4lbs and 12oz and in the 93rd percentile. I still have excess fluid and although my reduced carb diet is helping my weight it doesn't seem to be decreasing the fluid or helping Judah not gain so much weight. In two weeks if he is still gaining weight at this rapid pace I have to do another glucose test (the 3rd one during this pregnancy) to rule out gestational diabetes (again).
I feel emotionally drained. I was talking to my sister about everything and she said "you just have to let go and let God"... The things is, I don't feel like I'm holding on or trying to control things. I feel like I have "let go" but that I'm desperate for God to move! Emotionally I can't control myself at this time which can be a tad frustrating. I feel like my heart is ripped open and I'm bare before the Lord begging for Him to heal my son. I KNOW God will have His way and that's all I desire but everything inside me prays, hopes and believes that His way will be complete healing.
In all honestly, I'm a pastor and I thought I knew all the "right things to say" but going through this journey has made me realize that sometimes the "right thing" is to say nothing at all. To pray, to love and to just be there. We believe and we hope for things we can not see but in the end all we want is God's will. Those can be scary words to say because God's will is not always peaches and cornbread. Sometimes the journey is hard and dangerous and certainly narrow... it's not always "safe" but when we rely on the Holy Spirit he becomes our light, our way and we have strength to walk the journey even when we are barely hanging on. He is all the strength we need! He is the portion we feel like we lack and He is the grace to endure anything that comes our way.
We thank each and every one of you for your prayers and support! Now more than ever my whole soul cries out for a miracle and I appreciate every person who stands in agreement with us! We love you all!
Monday, February 6, 2012
Update on Judah 2/6/12
It's crazy to think that it's already February! We got a call on Friday from Children's Fetal Care Center/University Hospital saying that since I was going into my 30th week I needed to start seeing them every week until delivery. An hour commute might not seem like that big of a deal but it's an hour there (if we don't hit any traffic) and usually about 2-3 hours that we are actually there for the visit and then an hour back so it gets somewhat tiring. The reason they want to start seeing me every week is because they need to keep a close eye on his lungs and making sure he is practicing breathing as well as fetal development and growth assessments.
Judah is again still growing like a weed. He is now in the 98th percentile! It's been no secret that it's hard for me to maintain a good weight even when I try my hardest. The Doctor thinks that I could potentially have gestational diabetes even though I passed the glucose testing. He said that 1 out of 3 women are missed and not diagnosed when in fact they actually have it. So either I do have it or I'm taking in WAY TO MANY carbs!! They know this because of several reasons: 1. I've gained a lot of weight so far 2. Judah is really big and babies with diabetic moms are larger 3. Because there is excess fluid in the sac. They are concerned with the excess fluid and will keep a close eye on it in the weeks to come.
Today they wanted to discuss delivery plans which was great because I've been curious to know what they are thinking. They confirmed what I thought which was - I will be scheduled for induction the week of April 9th. I was relieved because I really wanted to make it past Easter but as I told them that was my goal "to make it past Easter" they said they can't promise that and that they could induce as early as April 2nd. I was really surprised at this!! It all will come down to the excess fluid and his size so we are looking at him arriving the week before Easter or the week after.
My goal is to move to a low carb diet with 1700-1800 calories a day - which is what the Doctor suggested. I had no idea that carb intake actually effected the fluid in the sac so I'm going to try to reduce my carbs in hopes that it helps reduce the excess fluid so that I can make it to April 9th!
We have anther assessment coming next week but luckily the Doctors said that we could alternate between coming there and seeing Dr. Bombrys (In CENTERVILLE) - This was exciting! Which means that we will only have to commute to Cincy 2 times a month!!
Our next appt in Cincy is Feb 20th - Judah will have another fetal echo and we will also go for our regular growth assessment. At that time we will also take a tour of Labor & Deliver, the Nicu at University Hospital and the Nicu at Children's - For those who might be confused - University Hospital is connected to Children's so I will deliver at UH and Judah will be transferred to Children's.
Thank you for you continued prayers and support! We are STILL believing for God to come through and heal our boy! We keep knocking, seeking and asking!! We know that we can trust God because HE ALONE IS GOOD. We trust in Him no matter what and fully rely on His strength to walk out each day! He is faithful!
Love,
Jillian
Judah is again still growing like a weed. He is now in the 98th percentile! It's been no secret that it's hard for me to maintain a good weight even when I try my hardest. The Doctor thinks that I could potentially have gestational diabetes even though I passed the glucose testing. He said that 1 out of 3 women are missed and not diagnosed when in fact they actually have it. So either I do have it or I'm taking in WAY TO MANY carbs!! They know this because of several reasons: 1. I've gained a lot of weight so far 2. Judah is really big and babies with diabetic moms are larger 3. Because there is excess fluid in the sac. They are concerned with the excess fluid and will keep a close eye on it in the weeks to come.
Today they wanted to discuss delivery plans which was great because I've been curious to know what they are thinking. They confirmed what I thought which was - I will be scheduled for induction the week of April 9th. I was relieved because I really wanted to make it past Easter but as I told them that was my goal "to make it past Easter" they said they can't promise that and that they could induce as early as April 2nd. I was really surprised at this!! It all will come down to the excess fluid and his size so we are looking at him arriving the week before Easter or the week after.
My goal is to move to a low carb diet with 1700-1800 calories a day - which is what the Doctor suggested. I had no idea that carb intake actually effected the fluid in the sac so I'm going to try to reduce my carbs in hopes that it helps reduce the excess fluid so that I can make it to April 9th!
We have anther assessment coming next week but luckily the Doctors said that we could alternate between coming there and seeing Dr. Bombrys (In CENTERVILLE) - This was exciting! Which means that we will only have to commute to Cincy 2 times a month!!
Our next appt in Cincy is Feb 20th - Judah will have another fetal echo and we will also go for our regular growth assessment. At that time we will also take a tour of Labor & Deliver, the Nicu at University Hospital and the Nicu at Children's - For those who might be confused - University Hospital is connected to Children's so I will deliver at UH and Judah will be transferred to Children's.
Thank you for you continued prayers and support! We are STILL believing for God to come through and heal our boy! We keep knocking, seeking and asking!! We know that we can trust God because HE ALONE IS GOOD. We trust in Him no matter what and fully rely on His strength to walk out each day! He is faithful!
Love,
Jillian
Wednesday, January 25, 2012
Update on Judah 1/25/12
Today we went for Judah's growth assessment ultra sound. Dr. Bombrys wasn't in today but that was ok because after all it was just for growth assessment. It was a good visit. Judah is now 3 lbs and approximately 15" long. He's in the 95 percentile for his age which is such a great thing. Some might say that I'm further along but I had my first ultra sound at 4 weeks so my due date is accurate.
The doctors at University Hospital have mentioned several times that there may be a chromosomal abnormality due to the fact that Judah was diagnosed with two abnormalities (Dandy Walker and Transposition of the Great Arteries). We rebuke this diagnosis in Jesus name and claim total healing! Usually babies with chromosomal abnormalities are very small in weight and height which Judah is NOT. This is great conformation for us that God is moving and working in my womb. I was asked again today about the amnio and I tried to explain to the ultra sound tech that I just didn't see the point. The Doctors already know the plan of action for Judah if God doesn't heal him before or at birth. They want to know if he has a "lethal syndrome" because if he did they would not take any extra precautions to save his life over mine. I tried to explain that my life is no more valuable than his! Just because I've breathed oxygen doesn't make my life more important. Life is life - in the womb or outside the womb.
A very special and anointed woman made Judah a blanket after having a vision of me reading the word over him. God gave her very specific colors (certain shades of blue, green and white) and miraculously provided the fabric. She made the blanket and anointed it, then brought it to us at church along with the descriptions of the meanings of the colors. So now every night I read to Judah I place that anointed blanket on my belly. It's been so crazy but as soon as I put the blanket on my belly he goes crazy. I take it off and he is still... I put it back on and he's dancing all around. I really believe it's the Holy Spirit filling my son and when you are filled with the spirit you just can't be still! :)
I came across this scripture in my daily reading to Judah. It stopped my in my tracks and is now the prayer I pray over him.
Luke 1:76-79 "and you, my little son, will be called a prophet of the Most High, because you will prepare the way for the Lord. You will tell his people how to find salvation through forgiveness of their sins. Because of God's tender mercy, the morning light from heaven is about to break upon us, to give light to those who sit in darkness and in the shadow of death, and to guide us to the path of peace."
Thank you to everyone who has joined us in prayer and stand firmly with us on the promises of God! WE WILL NOT BACK DOWN! We don't know the purposes and plans of God because they are far above our thoughts, plans and ways but we can trust that they are for good and not for evil - Plans to give us a future and a hope. Judah has a great purpose and he will live it out I'm certain of that. I don't know what it looks like but I know that he is the Lord's! He belongs to the Almighty God and you can't get any better care than that!
I have one more Doctors visit in January and then several in February already on the books... I'll keep you posted as we hear more victorious reports!
Proud Mamma of all my precious babies - the ones here and the ones in Heaven,
Jillian
The doctors at University Hospital have mentioned several times that there may be a chromosomal abnormality due to the fact that Judah was diagnosed with two abnormalities (Dandy Walker and Transposition of the Great Arteries). We rebuke this diagnosis in Jesus name and claim total healing! Usually babies with chromosomal abnormalities are very small in weight and height which Judah is NOT. This is great conformation for us that God is moving and working in my womb. I was asked again today about the amnio and I tried to explain to the ultra sound tech that I just didn't see the point. The Doctors already know the plan of action for Judah if God doesn't heal him before or at birth. They want to know if he has a "lethal syndrome" because if he did they would not take any extra precautions to save his life over mine. I tried to explain that my life is no more valuable than his! Just because I've breathed oxygen doesn't make my life more important. Life is life - in the womb or outside the womb.
A very special and anointed woman made Judah a blanket after having a vision of me reading the word over him. God gave her very specific colors (certain shades of blue, green and white) and miraculously provided the fabric. She made the blanket and anointed it, then brought it to us at church along with the descriptions of the meanings of the colors. So now every night I read to Judah I place that anointed blanket on my belly. It's been so crazy but as soon as I put the blanket on my belly he goes crazy. I take it off and he is still... I put it back on and he's dancing all around. I really believe it's the Holy Spirit filling my son and when you are filled with the spirit you just can't be still! :)
I came across this scripture in my daily reading to Judah. It stopped my in my tracks and is now the prayer I pray over him.
Luke 1:76-79 "and you, my little son, will be called a prophet of the Most High, because you will prepare the way for the Lord. You will tell his people how to find salvation through forgiveness of their sins. Because of God's tender mercy, the morning light from heaven is about to break upon us, to give light to those who sit in darkness and in the shadow of death, and to guide us to the path of peace."
Thank you to everyone who has joined us in prayer and stand firmly with us on the promises of God! WE WILL NOT BACK DOWN! We don't know the purposes and plans of God because they are far above our thoughts, plans and ways but we can trust that they are for good and not for evil - Plans to give us a future and a hope. Judah has a great purpose and he will live it out I'm certain of that. I don't know what it looks like but I know that he is the Lord's! He belongs to the Almighty God and you can't get any better care than that!
I have one more Doctors visit in January and then several in February already on the books... I'll keep you posted as we hear more victorious reports!
Proud Mamma of all my precious babies - the ones here and the ones in Heaven,
Jillian
Wednesday, January 11, 2012
Update on Judah 1/11/12
Today we went back to Children's in Cincinnati for another fetal echo on Judah and we also met with the heart surgeon.
The Echo showed that Judah still has what is called Transposition of the Great Arteries and for those of you who might not have read my last blog that basically means that the Left ventricle that pumps the blue blood is flowing where the red blood (oxygenated blood) should be flowing and the Right Ventricle (Red Blood) is flowing where the Blue blood should be flowing. This means that once he's born none of his blood would be getting to the lungs to be oxygenated therefore he would need to undergo open heart surgery to switch the ventricles. Also the Aortic Valve is not exactly right but the surgeon felt that it's most likely a bicuspid valve which would not need any real attention because it's a common abnormality that doesn't hinder anything. However if it's severely abnormal they will have to switch the valves at the time of surgery. The wonderful news is there is no longer a hole in the bottom portion of his heart! PRAISE GOD! That would have added some major complications in the surgical plan. Also there is a hole (which is suppose to be there) in the top left portion of the heart and if that hole is not large enough they will go in using a ballon prior to the surgery to make the hole bigger so the blood flows better.
So here is the (If God doesn't heal him) plan from the surgeon...
Immediately after delivery he will have 2 small tubes put into his belly button. One which will constantly monitor his blood pressure and the second one will be giving him a medicine that will keep his heart from needing to oxygenate his own blood. Basically it's like keeping him in the womb - as long as he is in my belly his heart doesn't need to oxygenate his own blood because my body some how does it for him. At that time they will check his oxygen saturation if it's not at a good level they will need to do the ballon procedure that makes the hole bigger so that the blood flows successfully. If that happens we won't even get to hold him after he's born but as long as he is stable and everything looks good that won't be a problem. After he is born they will do an echo on him to see everything more clearly. After that test surgical plans will be made. He would be looking at having the heart surgery on day 2 or 3 of his life because they want him to recover from delivery... it's all about his stability. The surgery will take about 6-7 hours total and he would stay in ICU for several days and then be moved to the main floor. We would be looking at a 2 week recovery time in the hospital. The main concerns after he is moved to the main floor all pretty much revolve around feeding. Often times babies that undergo things like this are delayed in learning how to feed. I'm planning on nursing so if God doesn't heal him I'm gonna be a human cow lol. I'll be a pumping machine. There isn't much I can do for our little man but I can give him love, prayers and Breast Milk haha.
Today we didn't hear the doctors give Judah a clean bill of health but we are thankful for the victory we did receive with the hole being gone! You have no idea how big that is!! Also the heart Doctor said "I'm not a brain doctor but his brain doesn't look bad to me. There isn't excessive fluid (which is often there with babies that have Dandy Walker)" She wasn't saying his Dandy Walker is gone but it did give us comfort and hope that God is also working on his little brain! We are still believing for a complete healing and one thing I know is... My God is an ON TIME God. His purpose and plans are far beyond our limited understanding and I trust Him with all I am.
We go back in 6 weeks for another fetal echo and in less than 2 weeks we will be with Dr. Bombry's for a growth assessment and again we are praying for a clean bill of health!
HOW BIG IS BABY JUDAH?? Well, either I'm two weeks ahead of my due date or I have one BIG baby boy haha! He's in the 96th percentile for his age. The doctor was questioning my due date (like always). She said he is REALLY tall and he weighs 2lbs and 5oz - all his measurements would put him in the late 28th week of gestation.
Love my strong baby boy and I'm believing for his complete healing!
Proud Mamma of Judah James and London Brooks Robinson
The Echo showed that Judah still has what is called Transposition of the Great Arteries and for those of you who might not have read my last blog that basically means that the Left ventricle that pumps the blue blood is flowing where the red blood (oxygenated blood) should be flowing and the Right Ventricle (Red Blood) is flowing where the Blue blood should be flowing. This means that once he's born none of his blood would be getting to the lungs to be oxygenated therefore he would need to undergo open heart surgery to switch the ventricles. Also the Aortic Valve is not exactly right but the surgeon felt that it's most likely a bicuspid valve which would not need any real attention because it's a common abnormality that doesn't hinder anything. However if it's severely abnormal they will have to switch the valves at the time of surgery. The wonderful news is there is no longer a hole in the bottom portion of his heart! PRAISE GOD! That would have added some major complications in the surgical plan. Also there is a hole (which is suppose to be there) in the top left portion of the heart and if that hole is not large enough they will go in using a ballon prior to the surgery to make the hole bigger so the blood flows better.
So here is the (If God doesn't heal him) plan from the surgeon...
Immediately after delivery he will have 2 small tubes put into his belly button. One which will constantly monitor his blood pressure and the second one will be giving him a medicine that will keep his heart from needing to oxygenate his own blood. Basically it's like keeping him in the womb - as long as he is in my belly his heart doesn't need to oxygenate his own blood because my body some how does it for him. At that time they will check his oxygen saturation if it's not at a good level they will need to do the ballon procedure that makes the hole bigger so that the blood flows successfully. If that happens we won't even get to hold him after he's born but as long as he is stable and everything looks good that won't be a problem. After he is born they will do an echo on him to see everything more clearly. After that test surgical plans will be made. He would be looking at having the heart surgery on day 2 or 3 of his life because they want him to recover from delivery... it's all about his stability. The surgery will take about 6-7 hours total and he would stay in ICU for several days and then be moved to the main floor. We would be looking at a 2 week recovery time in the hospital. The main concerns after he is moved to the main floor all pretty much revolve around feeding. Often times babies that undergo things like this are delayed in learning how to feed. I'm planning on nursing so if God doesn't heal him I'm gonna be a human cow lol. I'll be a pumping machine. There isn't much I can do for our little man but I can give him love, prayers and Breast Milk haha.
Today we didn't hear the doctors give Judah a clean bill of health but we are thankful for the victory we did receive with the hole being gone! You have no idea how big that is!! Also the heart Doctor said "I'm not a brain doctor but his brain doesn't look bad to me. There isn't excessive fluid (which is often there with babies that have Dandy Walker)" She wasn't saying his Dandy Walker is gone but it did give us comfort and hope that God is also working on his little brain! We are still believing for a complete healing and one thing I know is... My God is an ON TIME God. His purpose and plans are far beyond our limited understanding and I trust Him with all I am.
We go back in 6 weeks for another fetal echo and in less than 2 weeks we will be with Dr. Bombry's for a growth assessment and again we are praying for a clean bill of health!
HOW BIG IS BABY JUDAH?? Well, either I'm two weeks ahead of my due date or I have one BIG baby boy haha! He's in the 96th percentile for his age. The doctor was questioning my due date (like always). She said he is REALLY tall and he weighs 2lbs and 5oz - all his measurements would put him in the late 28th week of gestation.
Love my strong baby boy and I'm believing for his complete healing!
Proud Mamma of Judah James and London Brooks Robinson
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