It's been over a month since I've had a chance to update this blog. Nora Grace was born on August 28th. She was delivered via Emergency C-section, as her heart rate was lower than we wanted and things were not improving. But, when she was born, she had a very strong cry and appeared perfect and just about as healthy as possible. She did end up going to the NICU, where she was found to be pretty stable. She does have a Ventricular Septal defect, a hole in her heart between the two lower chambers. This is relatively common in babies and should close on its own. We will follow up with Cardiology in about 5 months to see how that is going.
Since being discharged initially after birth, Nora has been hospitalized three times. We are currently in the middle of the third admission. In the beginning, had we not had the diagnosis, we would never have known Nora has SMA. She had excellent muscle tone and was doing great. However, in the past week or so, I have noticed a dramatic decline. She has been struggling more with eating and has not been gaining much weight. Also, her respiratory status has declined. When we saw her Pulmonologist yesterday, she felt it was best for us to be admitted to the Pediatric Intensive Care Unit, where we can decide from here what we want to do.
Nora has already received 2 doses of Spinraza at less than a month old. Every person on Spinraza responds differently and at different times. Some people notice a change right away while others wait a year before they see any improvement. Obviously, we want to give Nora a chance to see if this medication will be of benefit to her. So we are looking to be as aggressive with treatment as possible.
Because of her respiratory struggles, Nora is currently on Bipap, which is a non-invasive ventilator. Unfortunately this is not likely to be a long term solution, so eventually we are probably looking at a tracheostomy and ventilator. In addition, with her eating issues, we are planning for Nora to have surgery to put in a gastrostomy tube for feedings, which will go directly into her stomach. As the disease progresses, children with SMA have trouble swallowing. Right now, Nora is doing OK with swallowing, but we do not want to wait for her to aspirate (meaning food goes into her airway/lungs instead of her stomach) before we do something. With that being said, both a trach and a gtube are surgical procedures and before those can be done, Nora's weight needs to be up to 3 kilograms. She is currently at 2.7 kilos, so she is getting close.
There are many things we have to figure out before we can bring Nora home. But, we are going to bring her home when we have everything in place to do so. We want to make sure that we have everything we need to give her the best life humanly possible.
Lydia and Justin are back home, for now. Later this week we are looking at having a Care Conference where we can discuss things with all of the people on Nora's team and have all of our questions answered. From there I believe we will be able to make a plan for moving forward.
While this is nowhere near an ideal situation, we are so very thankful for the amazing care provided to Nora (and both of our other girls) here at the Castle. Everyone is on the same page and it is a relief to know that she is in expert hands. We are still looking to move next month. Finances and all of the logistics of everything are very up in the air right now, but we are confident that God will provide for us.
I ask for prayers for our family, that we have the strength we need to get through this trial. Everything is a huge mess and we are very overwhelmed but we also know that God is amazing and will carry the burden for us when we don't feel like we can carry it any longer. So many wonderful people have prayed for us, donated funds to us during this time of need, and have offered an abundance of help. We are truly grateful for this, and though we feel that we don't deserve it and that we can't possibly pay everyone back for it, we also know that we can't be too proud and try to do everything on our own.
I plan to update as I am able. Thank you all for your love and support.
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