Bringing Baby Home…
What to Expect
About our new normal…
Our baby was born with a significant anatomical anomaly and his/her first bit of life has been a roller coaster. We are thrilled to be home and cannot wait to introduce our loved ones to our new baby. We want to make sure our family and friends understand that although our baby looks typically healthy we will have some challenges and limitations as we learn to navigate life at home. Please be sensitive to the extreme stress we have been under as our baby has fought for his/her life.
What we want to make sure our loved ones understand is our baby is going to be on his/her own timeline. Our baby has been intubated, operated on and was only able to rest in certain positions for the first part of his/her life. Because of this, they may have some developmental delays that require physical therapy, occupational therapy, speech therapy and feeding therapy. We want you to celebrate when we reach important milestones and understand that comparing our baby’s developmental delays to typically healthy babies is stressful and hurtful for us.
If you want to visit, please….
Call before you come. We want to see our friends and family, but it may not be a good time. If we say it is not a good time, please respect that.
Leave young children at home unless we specifically say it is ok for them to visit. If they have been sick in the last 10 days, they cannot visit.
If you have been in a big crowd, shower and put on clean clothes before you come over.
Wash your hands with warm soapy water and dry with a paper towel before you touch the baby. We will ask you to do this at our house and we hope you will understand it is to keep our baby safe. We may have hospital soap and hand washing stations for you to use.
Please don’t touch the baby unless we say it is ok.
Do not kiss the baby!
Only pick up our baby with permission. CDH babies have incisions spots, often have oxygen and may possibly have a feeding tube. We may need to help you pick the baby up or give you special instructions for the cannula or tender spots.
Make sure you have had a pertussis vaccination. Whooping cough or pertussis has been more prevalent in the last 10 years. We would prefer that the baby only be around people who have a current TDAP vaccination. Pertussis could be a death sentence for our CDH baby.
During flu season, we can only allow visitors that have had a flu shot.
We may turn down or cancel plans a lot over the first several years of our baby’s life. We hope you will keep inviting us even if we cannot accept the offer of plans. We often feel isolated and being asked to attend an event, even if we can’t makes us feel loved and included.
Infographic used with the permission of CDH UK.
About Feeding Tubes:
There are several reasons that a CDH baby might come home with a feeding tube.
CDH babies have small lungs so they get short of breath and tired very easily. Even sucking a bottle can exhaust them. A feeding tube allows babies to receive the necessary calories to grow without having to work to ingest them.
CDH babies are usually placed on a ventilator at birth. Some babies require vent assistance for weeks or months. Having an ET tube in his/her mouth for a long time can cause these babies to develop an oral aversion causing them to refuse a bottle.
Reflux, which is common in CDH babies, can be painful also resulting in a refusal to eat. A feeding tube allows these babies to receive nutrition to grow while they work on overcoming his/her oral aversion.
Babies who have severe reflux sometimes have a surgical procedure to prevent it called a nissen fundoplicaton. After this surgery babies are unable to burp so a g-tube is sometimes placed to allow his/her parents to vent excess air out of his/her stomachs after feeds.
Some CDH babies go home with a tracheostomy and require a ventilator to breathe. These babies usually have a feeding tube as they could be at risk for choking or aspirating on his/her milk/formula.
Our baby may have such a significant oral aversion that they truly will not eat, even if they are very hungry. Please be sensitive and understand that advice you would give for a child born typically healthy does not apply to our baby. Refrain from using phrases like, “They just need to be hungry.”
Tubie babies may still take a bottle or eat in a high chair. The tube allows his/her caregiver to provide extra calories or it could be a “safety net” in case the child gets sick and refuses to eat.
Some babies are connected to a pump to provide feeds at a set rate. This can be for 24 hours a day, just at night, or at set meal times. Each baby has different needs.
Feeding time is a way that typically healthy babies get to bond with his/her parents and care takers. Tubie babies and his/her parents do not always have this experience. This can be a tough reality for the parents to accept. Remember that there is no wrong way to feed your baby.