Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, January 20, 2013

We will do what we do

Thursday afternoon May had her two week doctor appointment. It was early out day and I decided to take Gator and Munch along... We had lunch at Wendy's for fun and then headed over to the pediatricians office. We did our usual chit chat and May's PKU, then our doc came in and even checked Gators ears for me. We were almost done with our appointment as she asked me the usual thing, "do you have any other questions or concerns" I had compiled a mental list of a few things I mostly needed reassurance about.. The little newborn rash cluster on her ribs, a cough and runny nose, and a little spot on her bum. We did a RSV panel and then checked her bum. I have been in enough situations with Gator to know when there is a concern and not just some maternal reassurance. Doctor M is very thorough and doesn't make me wait for answers. She wanted an ultrasound of this little bump. We had to take a little trip over to the children's outpatient lab at the hospital she was born. She tested positive for RSV... I know cardio not neuro, so this type of ultrasound had me a little confused. I couldn't read the techs face either... Since my two other kiddos were with me I called daddy for some help. Ry went with Englands. I knew there was something up when I was asked how close Jeff was and that the doctors would be in to discuss the findings. We found out some information but not a whole lot. The first being... May has a congenital condition called tethered cord syndrome. She also had a sacral dimple and what was thought to be an abscess. We needed more information and were told to go to PCMC.... There is nothing more freighting than having another sick baby. We have been in this position before and know what to expect... Just not fun... And frustrated. We took the kids to Dumas's and daddy and I drove May up. During our ED visit we found that the worrisome abscess is actually called a vascular malformation... Then her saturation levels dipped and they decided to admit her... She only stayed 24 hours, during her stay they couldn't tell us more about her tethered cord until we do a MRI or CT because they couldn't give anesthesia to a baby who wasn't breathing well. One thing in our favor was the fact that she never has had a fever. So we know that her little body isn't trying to fight off infection... Another reason why we only had a quick hospital stay... We were discharged on oxygen, something we can totally manage and pulse ox spot testing... Done... We own a pulsoximeter so that is easy!!! And we make sure she stays hydrated and pooping and peeping! Then we follow up with ped tomorrow!!! All in all if this were another family I am sure it would surely devastate. I went to a wonderful adult session of stake conference last night, while daddy manned the troops. I felt relief as they spoke about the temple and families. I felt a teeny bit selfish because I go to the temple as a sanctuary and to get a "heavenly hug" I know we are there doing work for others, but the way I feel about life afterwards, and the answers I get to troubles is so rewarding. It is times like these in my life when I could be more than just a little stressed and frustrated. I could be angry... Anger doesn't change anything it isn't productive... This knowledge also let's me know that there is a Father in Heaven who will listen to me and help me... He has already done that by sending May after Alex... Alex will guide his little sister(s)... We are also having Eden evaluated because of a sacral dimple present in her bootie!!! We feel lucky actually... Because we have been sent the most amazing spirits, just in broken bodies... I hope I can be the kind of mother that will nurture and strengthen these little spirits! Sorry to get churchy, arghh, then again I am not!!!
I will try and update more, it's just been whirl wind-ish around the homestead!!!


Ranee said...

Love you and your amazing family, Brynn! You git this, Mama! I'm praying for you all!
Love, Ranee

J.B. said...

Sending so much love your way! You are amazing and I'm grateful to know and love you.

Cynthia said...

We will all pray for your little family too. I am sorry for the additional worry. I hope it is something minor and easily managed. Bless her beautiful little self.

The Snell Family said...

you got this mamma.good you caught the rsv early. Both Arna and Oz have the dimple, Arna has cord issues but Oz is normal. i hope you get good answers and direction. love you guys!

Hillary said...

You are amazing lady. Period. These are some lucky kiddos. Your family is in our prayers. Please keep us posted. Love ya girlie!