If you would like to participate in praying for Jude at a particular time please click on the link below. You will be asked to enter your email address and then you will be given the option to choose a specific time to pray for Jude.
http://www.volunteerspot.com/login/entry/452345634103252063
Our c-section is scheduled for December 6th at 9am.
Below you will find the following information that will be helpful when praying for Jude and our family:
1. Specific things that you can remember in prayer when praying for Jude on December 6th and 7th
2. Scripture that has/will be important to us as we walk this journey
3. Information that can give you a better picture of Jude's CDH and what his medical struggles might look like.
Specific prayers for Jude:
1. Pray for complete healing of Jude’s CDH and lung underdevelopment.
2. Pray for a safe delivery with no complications. Pray for safety for Jude and for Rose.
3. Pray for Brian as he cares for Jude and Rose after delivery.
4. Pray for all of the medical staff who will be caring for Jude immediately after his birth and after he enters the NICU. Please pray for wisdom and certainty about medical decisions made to ensure Jude’s health.
5. Pray for Jude’s left lung. This is the lung that has most affected/crowded by his stomach and small intestines. It will be smaller and it may have a difficult time functioning at its best. Pray that Jude’s left lung will be larger and more developed than expected. Pray that his left lung will support his oxygen needs immediately after birth.
6. Pray for Jude’s right lung. Because his left lung has been crowded during this fetal development it is especially important that Jude’s right lung is developed and strong. Please pray that his right lung will be perfectly healthy and able to support his oxygen needs immediately after birth.
7. Pray that Jude will not experience pulmonary hypertension, which is very common in babies born with CDH. Pray for adequate blood flow and blood vessels in Jude’s lungs.
8. Pray for Jude’s heart. Pray that his heart will be healthy and strong and full capable of sustaining him. Pray that no defects or problems will be discovered after Jude is born.
9. Pray for all the organs in Jude’s body. Pray that they will all perform and function perfectly so that he is as healthy as possible after birth.
10. Pray for Jude’s surgery to repair his CDH. Pray that he is able to reach the milestones required before he can have surgery and pray that his surgery is successful and simple.
11. Pray that Rose will heal quickly and without problems from her C-section so that she can care for Jude as easily as possible.
12. Pray for Annabelle as she is away from her parents. Pray that she feels safe, happy and confident that she will see her parents soon.
Verses that have been important to us during this time:
Because of the Lord’s great love we are not consumed for his compassions never fail. They are new every morning: great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” Lamentations 3:22-24
You came near when I called You and You said, “Do not fear” –Lamentations 3:57
Oh Lord, do not forsake me; be not far from me, O my God. Come quickly to help me, O Lord my Savior. –Psalms 38:21-22
You, O Lord, keep my lamp burning; my God turns my darkness into light. – Psalms 18:28
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.” – Jeremiah 29:11-13
The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing. – Zephaniah 3:17
He is before us in all things and in Him all things hold together. – Colossians 1:17
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. – James 1:2-5
…your will be done… - Matthew 6:10
Information about Congenital Diaphragmatic Hernia
A congenital diaphragmatic hernia (CDH) is when there is an absence of a child's diaphragm, or a hole in his diaphragm.
- This can occur on either the left or right side, but is most common on the left.
- The contents of your child's abdomen, including his stomach, intestines, liver and spleen may go through the hole and into his chest.
- This prevents the normal development of the lung on that side, and may affect the growth of the other lung.
After he's born, your baby will have difficulty breathing if his lungs are not developed enough.
There are two types of diaphragmatic hernia:
- Bochdalek hernia: This type involves an opening on the back side of the diaphragm. The stomach, intestines and liver or spleen usually move up into the chest cavity. (This is the type that Jude has)
- Morgagni hernia: This type is rare and involves an opening in the front of the diaphragm, just behind the breastbone. The liver or intestines may move up into the chest cavity.
What causes a diaphragmatic hernia?
· Many factors are involved. Scientists believe that multiple genes from both parents, as well as a number of environmental factors that we do not yet fully understand, contribute to diaphragmatic hernia.
How often does a diaphragmatic hernia occur?
· CDH occurs in about 1 in every 2,500 babies. Bochdalek hernias make up about ninety percent of all cases.
What are the possible complications of a diaphragmatic hernia?
The lungs are developing at the same time as the diaphragm and the digestive system. A diaphragmatic hernia allows abdominal organs to move into the chest cavity, instead of remaining in the abdomen as they are developing.
With the heart, lungs and abdominal organs all taking up space in the chest cavity, the lungs do not have space to develop properly. This underdevelopment of the lungs is called pulmonary hypoplasia.
This is a life-threatening illness.
When the lungs do not develop properly during pregnancy, it can be difficult for your baby to breathe after he's born.
Healthy lungs have millions of small air sacs (alveoli), which resemble a balloon filled with air.
With pulmonary hypoplasia:
- There are fewer air sacs than normal.
- The air sacs that are present are only able to partially fill with air.
- The air sacs deflate easily due to a lack of a lubricating fluid called surfactant.
When these conditions are present, your baby is unable to take in enough oxygen to stay healthy. The intestines, when relocated in the chest, also may not develop properly, especially if they are not receiving enough blood supply while they are developing.
CDH is also of concern due to possible associated anomalies, which in some cases may include heart, genitourinary, gastrointestinal, central nervous system or chromosomal anomalies.
What are the symptoms of a diaphragmatic hernia?
Each child may experience symptoms differently. Symptoms (of a Bochdalek diaphragmatic hernia) could include:
- difficulty breathing
- fast breathing
- fast heart rate
- cyanosis (blue color of the skin)
- abnormal chest development, with one side being larger than the other
- abdomen that appears caved in
What's the treatment for CDH?
Treatment at delivery
- Care at a hospital that is equipped with extracorporeal membranous oxygenation (ECMO) is important.
- ECMO is a heart and lung bypass system that does the job that the heart and lungs would be doing; ECMO may be used temporarily while your baby's condition stabilizes and improves.
- Doctors may perform a procedure called EXIT-ECMO in which your baby is partially delivered via Cesarean section, and a breathing tube is placed to attempt to give your baby oxygen. If the oxygen level of your baby does not rise, he is placed immediately on ECMO, then the umbilical cord is cut.
Treatment after birth
Neonatal intensive care- A diaphragmatic hernia is a life-threatening illness and requires your baby to be cared for in a neonatal intensive care unit (NICU).
- Your baby will probably need to be placed on a breathing machine called a mechanical ventilator.
- ECMO - Your baby may need to be placed on this temporary heart/lung bypass system if he has severe problems.
- Surgery - When your baby's condition has improved, his diaphragmatic hernia will be repaired with an operation.
- The stomach, intestine and other abdominal organs are moved from the chest cavity back to the abdominal cavity.
- The hole in the diaphragm is repaired, or if the diaphragm is absent, an artificial diaphragm will be constructed.
After the operation
Many babies will need to remain in the NICU for a while after surgery.
- Although the abdominal organs are now in the right place, your baby's lungs still remain underdeveloped.
- Your baby will usually need to have breathing support for a period of time after the operation.
Once your baby no longer needs help from a breathing machine, he may still need oxygen and medications to help with breathing for weeks, months or even years.
Before your baby is discharged from the hospital, doctors will need to conduct many tests. These will check to make sure that your baby doesn't have any associated conditions and that all of his systems are working well.
These tests can include the following:
- arterial blood gas
- EKG
- EEG
- developmental evaluation
- head CT scan
- chest x-ray
- brain stem auditory evoked potentials
- ophthalmology evaluation
- lung ventilation/perfusion scan
- upper GI study
Some of these tests may also be repeated when your child is 6, 12, 24, and 36 months old.
What's the long-term outlook for my baby?
The outlook for babies born with CDH is increasingly positive. However, babies born with CDH can have long-term problems and often need regular follow-up care after going home from the hospital.
Problems may include:
- chronic lung disease: can require your child to have oxygen or medications
- gastroesophageal reflux: A condition in which acids and fluids from the stomach move up to the esophagus and can cause heartburn, vomiting, feeding or lung problems. Gastroesophageal reflux can be controlled with medications
- Failure to thrive: Children with the most serious lung problems are most likely to have growing problems.
- Because of their illness, they often require more calories than a normal baby in order to grow and get healthier.
- Gastroesophageal reflux can also cause feeding problems, preventing a baby from eating enough to grow.
- Developmental problems: These include the inability to roll over, sit, crawl, stand or walk at the same time health babies do.
- Physical therapy, speech and occupational therapy are often helpful for these babies to gain muscle strength and coordination.
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