It is something all CDH mamas dread. We work so hard to keep the nasty cold/flu germs away – but at some point we all lose the battle and our little ones with their varying degrees of fragility become sick. Some of these babies end up back in the hospital, back on oxygen support to help those underdeveloped lungs get over the illness without further injury. Some babies are lucky to get through it rather unscathed. I think we CDH mamas all spend more than the “average” amount of mama time watching our children breathe… looking for retraction, nasal flaring above “normal” for them. We double check – triple check – and check again that they are breathing. I think for me, for a long time it was hard to believe we were so lucky that we were going to be able to keep Finley. I saw so many and still do – that didn’t make it.. why would I be so blessed to be able to take this beautiful baby home and be able to raise her. So part of me thought something terrible would still happen. I think that is partly a PTSD reaction to what we had been through. As time has passed and we are further from our last hospitalization and countless prayers for help with this- it has gotten better. I have gotten to the state where I am thankful for being given today and try to just focus on this day. I don’t know what tomorrow will bring – but we’ll face that tomorrow. In the meantime I am just thankful for where we are. (Ok, I have digressed, but it felt important to share.) One of those blessings is that Finley didn’t get her first cold until 16 months.
I have said that statement several times to the amazement of others. I don’t think even Rowan was cold-free for 16 months – and Finley has the blessing of having an older sibling in preschool. At the first sign of that drippy nose I went on higher alert. Rowan had gotten the cold first- then me, and then Finley started with the drippy nose. By Saturday it had turned into a full cold with a cough, so I took her in to the doctor since I didn’t want her to get worse through out the day and then have our only recourse be the ER on Sunday. The Doctor working that day was not our usual Doctor, but I have seen her before and really like her. She ordered an X-Ray just to be safe to check for early signs of pneumonia. As she said, if something were to go to her lungs it would become bad fast. Since Finley was also due for her CDH follow up X-Rays – it would serve a dual purpose. It was amazing looking at the scans with the Tech afterwards. She said if I hadn’t told her that Finley had CDH (and she didn’t notice the large number of clips, gortex patch, and a gortex plug…) she wouldn’t have known it looking at the size of her lungs. All I can say is Praise the Lord! If that wasn’t the result of prayer, I don’t know what is.. because for Finley to have that much lung when she had a medium sized defect with a whole party of organs in her chest – is just a miracle. This doesn’t mean her lungs are normal “functionally” since all those organs squishing the lungs also effects the development of all those amazing things inside the lungs that do their magic. But given all the positive things we are seeing with her- she is in good shape. On the cold front, her lungs looked beautiful and clear and we were told just to wait it out and watch to make sure it didn’t get worse. Finley has had some extra nasal flaring having to work through the congestion while feeding – but otherwise seems to be faring really well. I just am so thankful for this. I continue to pray that she is able to kick these cold germs as this cold seems to be a bit of a lingerer.
Finley is also 100% walking now. About the last week or so before she turned 16 months she decided it was time and there has been no looking back. Pretty much what I expected – but I am still so amazed by her. Every day. I am so blessed to be the mama to these two girls. As my mom says – the best presents ever.