Timeline of Jude's CDH journey

When we got Jude's CDH diagnosis I searched all over the internet to find out more about CDH. I wanted to know if what I was experiencing was normal. And after Jude was born we once again searched the web in hopes of learning more about the impact of CDH on the life of a baby. It is our hope that this timeline will serve as a resource to other CDH families. It is long and involved but we hope that it can give CDH families a look into one child's CDH journey. Each CDH baby is different so no journey will look the same...but it helps to get an idea of the challenges that they might face.

-July 27, 2011
20 week ultrasound. It's a boy! Received CDH diagnosis and possible VSD diagnosis.

- July 28, 2011
First appointment with MFS. Confirmation of CDH diagnosis. Preliminary ultrasound suggests no VSD.
Afternoon appointment with MFS to complete an amniocentesis test. Concerns about Trisomy 13 and 18 are on our radar.

- July 30, 2011
Gender reveal cake shared with our family. Now everyone knows we are having a boy!

- July 31, 2011
We decide to share our son's name with everyone so that they can pray for him by name. Jude Lachlan Morrison!

-  August 1, 2011
Receive the results of amniocentesis: no Trisomy 13, 18 or other major genetic disorders.

- August 15, 2011
First 4-D ultrasound completed.
Amniotic fluid measured at 20cm.

- August 25, 2011
Amniotic fluid measured at 18cm.
During ultrasound it is confirmed that Jude's intestines are in his chest and that his liver and spleen remain below in his belly.
Visit with neonatologist at GHS - it becomes pretty clear that Jude does not need to be delivered at GHS and instead he needs to be delivered at a hospital with ECMO. It's looking very likely that we will deliver Jude at MUSC.

- September 8, 2011
Amniotic fluid measured at 22cm.
Ultrasound with cardiologist completed. Confirmation that Jude does not have a VSD!

- September 21, 2011
Amniotic fluid measured at 25cm.

- September 26, 2011
Amniotic fluid measured at 30cm, starting to feel uncomfortable.

- September 30, 2011
Starting to feel my first contractions
Amniotic fluid measured at 24cm, much lower!!!

- October 5, 2011
Appointment with MFM in Charleston.
Amniotic fluid measured at 24cm.
Delivery plan discussed and c-section scheduled for December 6, 2011.
Visit with MUSC neonatologist and visit the MUSC NICU for the first time.
Meet Melissa Altman with CrossBridge ministries. We decide to accept their offer to stay in one of the ministry's houses before and after Jude's birth.

- October 26, 2011
Amniotic fluid measured at 26cm.
Doctor's visits increased to twice a week.

- October 31, 2011
Amniotic fluid measured at 28cm.

- November 3, 2011
Amniotic fluid measured at 32cm.

- November 7, 2011
Amniotic fluid measured at 34cm.
Extra monitoring at MFM to check on Jude's heart rate and observe any contractions.
Cervix checked, no signs of labor.

-November 14, 2011
Amniotic fluid measured at 38cm.

- November 19, 2011
Online and actual baby shower. Shower attended by my closest friends and online friends mailed gifts in for the shower. What a day full of blessings!

- November 21, 2011
We relocate to Charleston to prepare for Jude's birth.

- November 22, 2011
Met with pediatric surgeon. Confirmation that intestines and stomach are in the left side of Jude's chest. The liver still appears to be below the diaphragm.

- December 6, 2011
Jude is born! 7lbs 15oz
Gave a little cry after he was born.
APGAR at birth was a 2.
APGAR after 2 minutes was an 8.
Placed on ventilator while NICU staff works to stabilize Jude's blood gases.

- December 7, 2011
Doctor says that Jude is the sickest baby in the NICU.
Jude has surgery to be placed on ECMO.
Surgery is successful and Jude begins his ECMO journey.

December 10, 2011
CVVH added to Jude's ECMO circuit to assist in removing extra fluid that Jude's body is holding on to.
Jude receives his first "taste" of breast milk.
Jude starts receiving CPT from respiratory therapists.

December 11, 2011
X-ray indicates that Jude's bowel is decompressed just as the doctors want it to be.
Sedatives weaned a little bit in an attempt to "wake Jude up" a little more.

December 12, 2011
Sedatives added back because Jude seemed uncomfortable and upset overnight.
X-ray indicates that Jude's bowel has air in it now.

December 13, 2011
Sedatives increased because Jude continues to seem uncomfortable and upset.
Jude's right lung has fluid on it now. Measures being taken to resolve this.
X-ray indicates again that Jude's bowel has air in it still.

December 15, 2011
First mention of a pleural effusion.

December 16, 2011
Plan starts for weaning Jude off of ECMO by turning the sweep down a little.
CVVH turned down to 0.
Pleural effusion appears to have improved a little bit.

December 18, 2011
Trial off of ECMO scheduled for tomorrow at 4am.

December 19, 2011
Trial off went relatively well but he had slightly high CO2 levels.
Pulmonary edema and pleural effusion have worsened.
Plan is to take him off ECMO tomorrow and have his surgery performed within 48 hours.
Echocardiogram planned for tomorrow to check on the status of his pulmonary hypertension.

December 20, 2011
Bilateral pleural effusion discovered from echocardiogram.
Discussion begins about the possibility of placing a chest tube to remove fluid from bilateral pleural effusion. Later in the day the surgery team decides that a chest tube is not a good idea because Jude's stomach is in his chest.
We are informed the the ECMO circuit will need to be changed due to clotting. And it is changed today.

December 21, 2011
Jude's abdomen because so swollen that the NICU staff was unable to perfuse him and keep him on ECMO. The pump kept "cutting out".
The fluid was first suspected to be chyle. Eventually it is determined that it is not.
We received a phone call at 3:15am from a surgeon telling us that Jude will need emergency surgery to relieve the pressure that was building in his chest and keeping the ECMO circuit from working.
We are informed that Jude may not survive the procedure.
It is discovered that Jude's UVC pushed through the vein and was dumping his TPN into his peritoneal cavity. 500 milliliters are removed from his little body.
Pleural effusion is gone on the x-ray - indicating that the pleural effusion was actually the TPN in Jude's little peritoneal cavity.
Ultrasound (later in the day) indicates that all is well with his head and IVP.
ECMO settings increased to provide extra support for Jude after the traumatic days he has faced.
It is also confirmed that Jude is septic with an infection in his bloodstream. He is started on broad range antibiotics.

December 22, 2011
Jude's lungs are "whited out" and not functioning well. This is likely because of the pressure on his lungs from the TPN that was filling his body.

December 23, 2011
Indication that Jude may remain on ECMO for another week.
We are also informed that surgery cannot be completed until Jude is free from infection.
Plan is to removed extra fluid, keep Jude's lungs conditioned, and move him towards coming off ECMO.

December 24, 2011 Christmas Eve
ECMO support turned down to 80%
Pleural effusion is back.
We have a serious talk with Jude's doctor and the seriousness of his condition is conveyed to us again. Jude is simply a very sick baby on top of having CDH.

December 25, 2011 Christmas
Small signs of improvement in Jude's abdominal swelling
Nurses able to turn down ECMO settings slightly.

December 26, 2011
Large clot in ECMO circuit. ECMO circuit stops working and Jude had to be taken off emergently and placed on another circuit.
Plan for tomorrow is to place a chest tube to remove extra fluid on Jude's right lung. The hope is that this will allow for his lung to function better and therefore give him the extra push to get him off ECMO.
Discussion about giving Jude dexamethasone in a few days to help give him another extra boost to get him off ECMO.

December 27, 2011
Jude is 3 weeks old!
Chest tube placed and 100cc of fluid drained. And the fluid looked a lot like the TPN that was found previously. Cultures sent off for identification.
Jude seems to be in a lot of pain today.
A lot of peeing today too!

December 28, 2011
Trial off ECMO scheduled for tomorrow.
Lots of peeing and fluid "coming off".

December 29, 2011
Trial off ECMO completed after only 1 hour and 15 minutes.
CO2 levels were a little high but the plan is now to take Jude off ECMO tomorrow.
First dose of dexamethasone started today. (He will receive 6 total)
Plan is to move Jude to the oscillator tomorrow before a short trial off and if all goes well: he comes off ECMO!
We are also told that the surgeons would like for Jude to be back on the conventional ventilator before he can receive his CDH repair. 

December 30, 2011
Strange "setback" in the early a.m. and his lungs appear to be "whited out" again according to his x-ray.
He is successfully moved to the oscillator ventilator and it seems to be helping him "blow off" his CO2.
Clamp off from ECMO at 3pm. He will also have an echocardiogram to monitor the function of his heart during the clamp off. Great blood gases too.
Clamp off goes well and echocardiogram indicated improvements in Jude's heart function.
Jude is taken off ECMO at 7:30pm and is receiving support from the oscillator. The hope is that he will be able to transition to a conventional ventilator before his initial CDH repair surgery.

January 4th, 2012
First tummy time!

January 7, 2012
Jude is moved from the oscillator to the conventional ventilator. The blood gases that follow show much improvement in his CO2 levels.

January 8, 2012
Mommy holds Jude for the very first time. We are also informed that Jude's initial CDH repair surgery will take place tomorrow (January 9, 2012).

January 9, 2012
Initial CDH repair surgery day.
The surgeon (Dr. Hebra) stops the procedure after opening Jude up (through abdomen and chest) to inform us that Jude's bowels and organs are a matted mess. Dr. Hebra informs us that this problem is life threatening and that moving his organs and bowels could cause significant blood loss. He calls in several other surgeons to help because this is such a unique surgery at this point. We are super worried.
Jude's stomach, bowel and liver are in his chest and he has very little of his left diaphragm. Jude pushes through surgery and Dr. Hebra finishes up much faster than we expected. We learn that Dr. Hebra had to patch Jude's diaphragm with an AlloDerm patch (instead of Gortex) because of the infection that remained in his abdomen as a result of the earlier (December 21, 2011) UVC leak of TPN. The AlloDerm patch is at a higher risk for breaking down and therefore making reherniation more likely.

January 13, 2012
Daddy holds Jude for the first time! Jude receives his first breast milk via ng tube.

January 16, 2012
Jude comes off the conventional ventilator and is placed on CPAP. We hear his cries for the first time ever.

January 17, 2012
Jude begins receiving physical and occupational therapies.

January 18, 2012
Jude is moved to a bigger bed.
Jude has an echocardiogram that indicates that he has little or no pulmonary hypertension present.

January 20, 2012
Jude experiences his first bout with medication withdrawals.

January 21, 2012
Jude trials on nasal cannula for two hours a day for the first time today.

January 24, 2012
Jude's feeds are cut in half because he had several watery stools (mal-absoption). The doctors change the type of gear used to deliver Jude's CPAP because he appears to be more labored in his breathing. The change seems to help.

January 28, 2012
Jude seems to be struggling on this day. Blood gas is poor and x-ray shows some pulmonary edema. Lasix medication is resumed (was stopped earlier in the week) and Jude receives a double dose today. His follow up blood gases look much better.

January 30, 2012
Jude continues to be uncomfortable today. His ng tube is advanced into his intestines because the doctors think that his stomach may be inflamed.

January 31, 2012
Jude seems to be feeling a little better. Feeds increased today and medications weaned for the first time in a week.

February 1, 2012
Jude struggles again and requires 100% oxygen support from his CPAP. The doctors change the type of gear used to deliver Jude's CPAP. The doctors also do an x-ray, draw blood for cultures, perform a respiratory panel and place him on antibiotics. As the day goes on he requires less oxygen support from his CPAP.

February 6, 2012
Jude meets his sister for the first time!

February 9, 2012
Jude is placed on a "bridge" medication to help wean him off of the medications he has been on for so long.
Jude pulmonary hypertension appears to be slightly increased and he is therefore placed on preventative medication.

February 12, 2012
Jude gets moved to a "window seat" bed. Sunshine!
Jude's oral aversion is quite apparent and we realize his feeding journey will be very difficult.

February 13, 2012
Another test reveals that Jude's bowels are still struggling with mal-absoption.

February 15, 2012
New digestive plan set: no more mal-absoption test...instead they will do fecal fat studies.
Mommy switches to a dairy free diet to see if Jude has a dairy allergy.
Jude is officially weaned off his sedative today!

February 18, 2012
Jude starts trying out Vapotherm 4 hours a day.

February 21, 2012
Jude sits in his therapy chair for the first time.

February 23, 2012
Jude is officially off his pain medication!
Jude has his first tub bath!
Fecal fat test results indicate he is absorbing nutrients well.

February 27, 2012
Jude comes off CPAP and is moved to Vapotherm.
Jude's sister visits again!

February 29, 2012
Jude reaches "full feeds" and his PICC line is removed. All nutrition and meds will now go through his ng tube!

March 6, 2012
Jude comes off Vapotherm and is moved to O2 nasal cannula.
In recent days it was discovered that Jude pulled his ng tube from a "J" tube to the milk going into his stomach. They decided to leave it in his stomach to see how he handles it. As of today he is tolerating it well.
Jude gets a visit from the eye doctors.

March 7, 2012
Echo completed. Pulmonary hypertension looks even better. PDA has closed.
Neonatologist discuss the possibility of transferring Jude to the hospital closer to our home. But after consulting with all of the doctors caring for Jude it is decided that it would be better to wait to move Jude until it is decided if he should have a g-tube or not.

March 11, 2012
Jude is completely weaned off morphine!
Doctors begin compressing feeds.

March 14, 2012
Jude is 100 days old!
Jude is completely weaned off atavan!

March 18, 2012
After a visit the night before (3/17/13), it is discovered that Jude has reherniated.
We find out that Jude's surgeon is out of town and the other surgeons want to wait for him to return before deciding to repair the broken patch.
Jude's milk feeds are stopped. A PICC line is placed again.
PT and OT is put on hold until after surgery.

March 22, 2012
Jude gets a big boy crib in the NICU!

March 25, 2012
Jude is confirmed to have strabismus in both eyes.

March 26, 2012
Jude's surgeon returns to work. And he shares that he desires to wait as long as possible to repair Jude's hole in his diaphragm. He wants to give plenty of time for Jude to heal and grow to make him as healthy as possible before another surgery.
We are also told that a g-tube and diaphragm repair can't be done at the same time.
It's also decided that Jude will get a BROVIAC line placed.
Jude begins showing small signs that it's getting harder for him to breathe.

March 28, 2012
Jude gets a BROVIAC.
Jude's feeding tube is placed TP.

March 29, 2012
Jude is successfully extubated one day after surgery.
It appears that his new feeding tube is kinked and they are unable to feed him.

March 30, 2012
Radiology changes the tubing for Jude's feeding tube.

March 31, 2012
Jude is placed back on Vapotherm.

April 1, 2012
It is confirmed that Jude has his first cold.

April 3, 2012
We have a meeting with Jude's surgeon and he conveys the seriousness of the next surgery/repair. This surgery will be life threatening (again).

April 4, 2012
Jude is sedated and placed back on the ventilator after bad blood gases and trouble breathing.

No comments:

Post a Comment