Here is the story of this on-going saga, but for those who aren't into a 10 minute read please just pray for our sweet girl, Airdrie.
One evening at the very end of January Mark was holding Airdrie and noticed she had tensed up and was shaking (not like a seizure, but in pain). Her eyes had tears streaming out of them, her face was red, and blood was running out of her mouth.
Airdrie had just bitten through her lower lip.
Our sweet girl has always had some kind of issue when it comes to pain. If she rolled over on the floor and hit her head on the radiator she didn't cry. Getting her vaccinations....she didn't cry. As a matter of fact I don't think it's an exaggeration to say we have never heard Airdrie cry out in pain. For this reason we became increasingly concerned as daily Airdrie would re-injure her lip by continuing to gnaw on it.
There was no way to fix this but to pray that at night it would heal up (and maybe the secret hippie-mom part of me who hoped the milk I pumped for her would be some kind of ultra super healing balm). Airdrie then moved on to biting her tongue and insides of her cheeks. Her lip healed, but it was still a nightly thing for me to have my shirts soaked in blood and saliva before getting the baby to bed.
At first we attributed this to teething and Airdrie's lack of pain perception, then perhaps we thought something more. As I had just weaned Airdrie 2 weeks prior we thought the change to more cows milk might be causing her to be bound up. I played the part of a hippie-mom again and switched her to goats milk--it's easier to digest. It seemed to help maybe a little, but things still weren't right.
After a week I called Airdrie's speech and language therapist and left a message. When it had been 3 days and we didn't hear back from them we called the GP (general practitioner). Airdrie got a prescription for a laxative and was sent home with instructions to come back in a week for follow up.
Meantime Airdrie grew increasingly irritable, she didn't smile much anymore, I could hardly put her down and I had to nightly change her sheets because she soaked through them with blood and saliva.
By this point in time we were growing desperate. All health professionals we talked to we've have to tell them what Dandy Walker Malformation (Airdrie's issue) is and explain the past 16 months medical history. I began seeking other people who might be able to help us or point us in the right direction. My sister in Minnesota began to do the same and contacted a friend, Brenda, an OT from Texas who had coherent thoughts and offered to help.
Brenda has a brief but great history with us. As a former neonatal nurse she offered invaluable help to us those first few weeks of bringing Airdrie home when our baby girl would not wake up and was not eating well. Brenda was also so encouraging to me as she was one of the women God brought to me for encouragement right after we found out there was something wrong with our baby at the ultrasound when we were still living in Texas.
Brenda and I exchanged emails back and forth and Sensory Processing Disorder came up along with high pain thresholds. We talked about how to help Airdrie get the sensations she was seeking (a slight touch isn't enough for her, she would rather bang her head on the coffee table leg). We talked about vibrating teethers, bouncing on an exercise ball whilst feeding Airdrie her bottle, and even high oral stimulation from puppy chew toys!
|No worries, this is just spaghetti sauce.|
We went in to the GP for a follow up. She saw the bite marks all over Airdrie's tongue, prescribed some teething gel and refilled the laxative prescription. Airdrie stopped sleeping well and was not eating well at all.
I then contacted our doctor from back in Missouri--the amazing Christian man who delivered the first 3 (well almost the 3rd) of our children. He was the one to pray with me before sending me over to be induced with Caedmon. He prayed with us after delivering the heartbreaking news, "I'm not seeing a heartbeat [on the ultrasound]" with our second child; he stepped out of the role of doctor and prayed over me as I struggled 34 hours into labour with Caithness...
He and his family have become dear friends within the past 9 years. We trust him explicitly. Dr. W got on the phone and placed a phone call to a paediatric neurologist and the next day called us in Scotland to give us the information.
First and foremost all the signs of irritability, not sleeping, not eating; Airdrie needed a repeat MRI scan to check for hydrocephalus. In this condition something blocks the flow of cerebral spinal fluid that is normally around the brain as protection, but causes pressure on the brain if blocked and built up. Airdrie is at high risk for this because with her DWM she has a cyst on the back of her skull that could possibly block the ventricle where the fluid is.
Because the UK has a much different healthcare system from the USA we knew it wasn't as easy as saying we needed an MRI. There are certain steps through the system you must take, procedures that must be followed, and queues (lines, so to speak, for our American friends) that last for weeks or even months while you wait to be given an appointment. So we began to pray that the Lord would let Airdrie have an MRI and soon.
Monday morning at 5 am Airdrie was up, crying. There continued to be episodes with her biting and we both were covered in blood before long. I again called NHS 24 with the intent of informing them we were bringing Airdrie down to the hospital to be checked.
Well that's not how procedure goes and the G-Med I talked to at the Children's Hospital said that I need to take her to our local hospital and they could refer her down to them. I politely refused this saying they had already seen her and didn't know what to do or what was wrong. She told me that if Airdrie needed to come straight to RACH then she would have to come by ambulance. It was our only option to get Airdrie were she needed to go. So we took an ambulance ride at 10 that morning.
Airdrie was admitted yet we remained in the assessment ward for 24 hours observation. The neurologist we spoke wanted to see her signs and symptoms before submitting her to any scans. That was an awful night. Airdrie was up screaming and crying more than ever before and especially because of the 4 hourly checks by nurses. Also, did I mention we were in a ward? This ward had 6 "bays" that are merely partitioned-off by curtains. There was no privacy for patients and the influx of sick and crying kids was heartbreaking. I awoke at 1am to the baby next to us having a seizure--all I could do was pray as I heard the panic in the parents voices and the Dr's measured words meant to calm.
Tuesday morning found me rumpled, tired, without food for 36 hours but it all was ok when we found out Airdrie was indeed going back for an MRI! Mark was trying to get the big kids dropped off, a change of clothes for me and race down to the hospital in time, but they called us down first.
Airdrie had to be sedated and the (3rd try!) IV cannula that was inserted into her hand the night before was not working so the anaesthetist had me hold Airdrie while he held the mask to Airdrie's nose and mouth to administer the gas. That. Was. The. Most. Awful. Thing. Ever. To have your baby go limp in your arms is a hideous thing. I placed her on the table, kissed her, and had to leave. As soon as I got back to the ward I called Mark in tears. He was 20 minutes away.
We were soon called back down and I had a friend in Elma, Airdrie's Polish nurse who was reassuring and kind. Airdrie's waking was rough. She kicked and fought and had to be swaddled to make the ride back over to the children's hospital on her gurney. Mark was there waiting when we returned and was so helpful in keeping Airdrie occupied.
We had to stay one more night in the hospital as the MRI results weren't in. This time Airdrie and I were moved to the medical ward with our own cubicle (private room!). This night, Tuesday, went much smoother and Airdrie slept a solid 12 hours (I asked them NOT to monitor her blood pressure that night!).
Having a dose of tylenol or ibuprofen seemed to help Airdrie, if nothing else than to keep her tongue from being so sore. After speaking with the neurologist later on Wednesday we not only found out the MRI was clear (thank you, Lord!), but decided a lot of her problems stemmed from the fact that she had some major damage in her mouth from biting.
While the neurologist (Airdie's own, who has seen her for the past 16 months) was in meeting with us Airdrie had a biting episode complete with blood (you hate it, but it is good for the doctor to be there to witness). She said bringing Airdrie in for the MRI was the right thing to do, but to be on guard still because things can change. Airdrie does appear to be in pain, and it does seem to come in waves.
There is a chance Airdrie does have increased inter cranial pressure that's not visible on the MRI that is causing pain. If this is the case the only way to be sure is to do invasive testing and that will have to be down in Edinburgh or Glasgow where Airdrie can be in the HDU (ICU) at their bigger children's hospitals.
We are...overwhelmed. Airdrie is our happy girl, so content, never fussy, and always smiling. She hasn't been like this for 3 weeks now. And not for my sake alone do I want her well--you can tell she's hurting, that something is amiss.
So we will continue to work with OT here, Miss Brenda in Texas, and our Dr in Missouri to all try and figure this out. In the meantime we cover our baby girl in prayer. At night sometimes we'll sneak in and put our hands on her just to pray that she rests well, her mouth heals while she sleeps, and that Jesus protects her all while giving us wisdom in seeking treatment for her.
Thank you for doing the same. We are powerless to help, but there is the Author and Perfector of our faith who is able to do immeasurably more than we could ask or imagine.
Love in Christ,
Mark & Jordan