God is filling up Ellie's pod (NICU room - 7 infants total) with miracles. Ellie's new friend has had a rough road. He is around a month old and just had his sixth surgery today, one tough little man. We don't want to share any details out of respect for this little boy and his mommy, but God has blessed this little boy in ways that we can't imagine. We have befriended this mom and have attempted to show our love and encouragement and our Lord's love to her. It hurts April and I so much to see another parent go through such a difficult and trying time. This special lady is one of the toughest people we have ever met in our life. We are so thankful and blessed to see our Lord touch this family's life. After surgery tonight, grandma was praising God with prayer vocally and I found myself praising God as well and feeling as happy as they must have been for such a positive outcome of his surgery. We truly believe that our God can perform miracles through the hands of doctors, and that's exactly what happened. Please remember this little man in your prayers!
Ellie is doing good, but she had another uncomfortable day today. We are fairly sure that the breathing tube going down her throat is what is making her uncomfortable. The ventilator is like a double edge sword, she has to have it to live, but it is making her gag and is very uncomfortable. She lays there kicking her feet, waving her hands. crying and gaging. All we want to do is take the discomfort away, but we can't. So we talk to her and try to comfort her by placing one hand on top of her head and the other on the bottom of her foot. Sometimes we think it helps and other times we know it doesn't. It breaks our heart. We know she is improving and we are told she is exceeding the expectations of the doctors, but it hurts us so much to see her like this. When it gets bad, the nurse gives her a bolus (a large single dose of medicine) of the sedative that she use to be on. This narcotic was given to her continuously until Sunday and made her sleep 20 to 22 hours a day. We are glad she is off of it so she is much more alert, but we hate that she is upset about the tube.
Ellie's medication, Nitric Oxide (for pulmonary hypertension) is now on 5, it was on 40 last week. To replace this gas administered through her ventilator, they are giving her an oral medication through her feeding tube. Her vent setting was adjusted again today to a setting to encourage her to breathe more on her own, and she is. She is able to breathe above the vent when she wants to. When she doesn't want to, the vent provides her with plenty of oxygen. The vent is a very complex machine. It provides pressure to open up her lung, a predetermined number of breaths per minute, back pressure to prevent her lung from collapsing and of course oxygen. The settings are currently being tweaked day by day to help wean her off. There are many different types of ventilators and CPAP (Continuous Positive Airway Pressure) machines that she may use in the future. It is a very slow process and could be years before she is off of some type of breathing assistance.
The Bronchoscopy procedure has been postponed until Monday. A pulmonologist will insert a very small camera through the vent tube to get a real time visual look of the entire airway and her lung. This will give the doctors more information of what ventilator settings will suite her best and what type of other treatments that need to be completed.
In the next few days Ellie will start feeding more like the average infant. She will be getting 3 hours worth of milk in 2 hours. Then they will increase it to 3 hours worth of milk in 1 hour. Basically training her to take a feeding every 3 or 4 hours like healthy babies do. Children's is so proactive and have thought of everything to help the maturity and development of infants. We are so thankful the level of care is readily available to our pride and joy.
Best for last - the genetics results came back today and Ellie is perfectly normal, she was just made a little differently than what we are used to. Her anatomy being reversed and her only having one lung is an issue of the chromosomes not coming together properly during the time she was created. This is not a genetic problem. The doctors have implied that the holes in her heart is not related to the chromosome issue. A hole in the heart is a fairly common occurrence in newborns. Often times people can live their whole life and never have any type of intervention. Also, a hole in the heart can close up on its own.
Please continue to pray for our baby girl and all of the children at Cincinnati Children's Hospital, especially Payton Kalb. Please pray for all of the mom's and dad's too. It is unbelievably stressful for us parents with sick children.
Thank you for following us! God bless!
Matt (Ellie's daddy)
P.S. No pictures today, Ellie had a rough one. Check back in tomorrow!
