SUNDAY, NOVEMBER 18, 2012 11:20 PM, MST
New Blog
Jeff got a blog started for me and I've posted an entry. If you're interested it is keepondancinglife.blogspot.com. I'm still working on putting it all together, but posted Keira's birth story.SUNDAY, NOVEMBER 18, 2012 9:07 PM, MST
Last week felt so so long. Keira is doing great. All appointments went well. Her current weight is 8 lbs, 12 ozs. Her ears look clear and she continues to withstand all of the germs that have been circulating through our household.Keira has been smiling more and more- especially at her dad. I have been waiting and waiting for this stage, thinking it would provide me with a much needed boost and though it is wonderful to see her engaging, it has not brought me the relief I'd hoped it would. I'm finding it difficult to enjoy Keira's babyhood as if I'm continually waiting for the bottom to drop out. She really is perfectly healthy at this point but I'm perpetually on guard for what may fail to develop. I'm scared to hope that things may go better than anticipated.I felt more like Keira's manager than her mom this week. Though I am home with her a lot, it took hours and hours to construct her disability appeal. I was also able to obtain Medicaid this week for all three kids as well as food stamps. Man, is that humbling. This just goes to show that we should never make assumptions about people on this type of assistance. I've struggled more than I thought I would with accepting these services. I want very much to be a good steward of the money and not to look like a hypocrite. After all, I confess, I do carry an iPhone and I recently bought fancy new running shoes. However, I am realizing that these occasional purchases do not necessarily represent an extravagant or irresponsible lifestyle. If I sold my shoes and my phone, it would not afford me the month's groceries, let alone insurance premiums. Anyway, it is what it is and Jeff and I are more confident that we'll be able to pay all of the bills for the next few months. And for this I am incredibly thankful because I'm barely able to get through my meager 10 hour work week at this point.This week: Global developmental evaluation on Tuesday (we had to reschedule last week), repeat hearing test on Wednesday, blood draw, and introduction to Uncle Matt.As it goes with the third child, I've been terrible about taking pictures. Jeff has been much better and as soon as I can get ahold of his phone I'll upload some pics to this site.I have decided to go ahead with a blog of my own. Soon I was transition from writing on Caringbridge to writing on Blogspot. I'll let you know when that happens.SATURDAY, NOVEMBER 10, 2012 9:28 PM, MST
Thanks to those of you who've asked. Here's a quick update:
Recovered well from the tubes. Opthamology went well. No clear problems there. Her focus and tracking are on the slow side but still within normal for her age. Checking back in with him in 3 months.
She slept through the night last night. Moving up into size 1 diapers and 0-3 month clothes! Overall Jeff and I think she's less alert/aware/interactive than a typical 9 week old, she still seems much like a newborn.
We're relieved that K actually DID get Medicaid albeit through our income rather than her disability. Whatever works for now!
Next week: infectious disease specialist, ENT follow up, and global developmental evaluation.
On the side I'm working on writing K's birth story. Thinking about eventually transitioning from caring bridge to a blog focused on my maternal meandering a as I take this journey.
Love you all.MONDAY, NOVEMBER 5, 2012 6:20 PM, MST
Tubes
Early this morning, Keira got tubes put in her ears. The little surgery took all of 10 minutes, maybe. Both ears had been quite infected apparently. Keira cuddled with Grandma most of the day while the anesthesia wore off and then...
When K woke up this afternoon, she was more alert, oriented, and interested that she has ever been. The only thing we can figure is that she is hearing SO much better. So interesting that the results of her hearing better manifest as better eye contact, more smiles, etc. Yay!Next week, Keira will get a repeat test from the audiologist to see if there is any remaining hearing loss, which would be more permanent. If so, she could be fitted soon for itty bitty hearing aids.The bad news of the day is that we finally got word from Social Security and they turned Keira down. A refusal from SSI means they do not consider her disabled, which means that she doesn't qualify for Medicaid, which means unthinkable medical expenses on our plate. We are going to appeal. Several credible sources have told us that we WILL make this happen.Next up: opthamology on Thursday.TUESDAY, OCTOBER 30, 2012 9:32 PM, MDT
Thank God it's NOT Friday
So it turns out that the weekends are particularly hard for me. There's less structure, no doctor appointments, and without extra company I think I let down more.
I spend a lot of time and energy during the week managing everything. Last week, our washer, fridge, and coffeepot all malfunctioned and the boys got ear infections (K seemed to get a cold, but she's fought off well!)! So, I spent much of the weekend sleeping and feeling sad and reading story after story about CMV families online. Jeff's right, I should probably lay off that, but I think it's part of the process, too. I have to acknowledge that our girl could potentially never walk or speak and have uncontrollable seizures, retardation, etc.
But I need not dwell on that. It dampers my enjoyment of Keira's babyhood. And there are good signs and things to be thankful for: smiles, good eating and digestion with no reflux, strong head and neck, vision, hearing, weight gain, etc. In fact Jeff says she's reached one of her first milestones: a double chin! I heard a good analogy recently..it's like I'm rafting in a river with a strong current. Rather than wasting all my energy by trying to fight the current and stay in one place, I need to let go and ride the current.
Current needs- I'm trying to do more and more on my own but I think I really benefit from having some company with me much of the time. We're making ends meet financially so far but that's without having paid any medical bills and student loans in forbearance. Another round of meals for our fridge would be great.
I'm forever thankful for all of you who are still reading, knowing that our family needs ongoing support. Even though things are ok today, we don't know what the future holds and love that you've got our backs. I'm also so thankful for my wonderful husband and the boys. And especially thankful and dumbfounded by the fact that my faith and endurance are so much stronger than I thought they were!
K often splays her little toes out like this. While feeding her a bottle, my mom remarked that its like holding up your pinky when you have tea!THURSDAY, OCTOBER 25, 2012 2:42 PM, MDT
At 6 weeks, Keira finally weighs a whole 7 pounds. We've had several appointments this week, but all in all, things are going well. Today we saw the ENT and we scheduled for Keira to have tubes in her ears on November 5th. Soon after that, we'll be able to find out whether she has any permanent hearing loss.
Jeff and I are trying to cope and stay healthy as best we can. Some days are harder than others. Just thinking about the number of doctors and appointments she has makes our heads spin. We don't really have a model for how this is done, but we know we need to be sleeping and exercising and eating well and going on dates, etc. etc. We've still been accepting a lot of help around the house and with the kids to be able to afford this for ourselves.Keira is such a good baby. She is sleeping at least one 4 to 5 hour stretch a day now. The times when she is awake and alert are getting longer and longer, though she still sleeps most of the time. She's easy to sooth. We have caught a few smiles from her, particularly when she's with Daddy. We've been trying to play/interact with her a bit more. She doesn't seem to focus on a face well...maybe its just too early.We've been out and about with Keira a bit more, too. We took her to church on Sunday. We had our first meal out as a family the other night. That's where the cute pic of Liam was taken.WEDNESDAY, OCTOBER 17, 2012 7:07 PM, MDT
Busy day
Two big appointments today. First, Jeff and I went to our OB follow-up. We were anxious about this because since Keira's birth we have wondered whether the CMV could have been detected, and thus treatment begun, in utero. I'm not sure what Jeff and I expected. The appointment went fine. The doc seemed pretty nervous and admitted that he had never seen a case of CMV before. He's pretty sure that he had no reason to suspect that anything like this might happen.
Then Keira had an appointment for a more thorough hearing test with an audiologist. The funny part was that we had to keep her awake for two hours prior to the test. Ha! I don't think she'd ever been awake that long, but my mom and I put on a little song and dance and got the job done. We even scored a smile or two from her during that time!So, the results from the testing showed moderate to severe hearing loss in one ear and mild loss in the other. This was scary initially, but the audiologist ruled out current loss due to neural problems (good news!) and ruled out permanent/irreversible/sensory hearing loss (most likely, anyway...also good news). We're hoping all she needs is a little time or maybe tubes in her ears. We'll be following up with the pediatrician and probably an ENT and then back to the audiologist next month.I'm finding that I'm feeling much more comfortable at home with Keira and the boys. I'm hesitant though, to turn away help. I think I'm afraid that if people leave me alone, they might never come back or that I might break down without the extra support.Went back to work on Monday. It didn't go too badly, but I'm not too excited to go back. I'm going to work very very limited hours for a while until I feel more comfortable being away from home. I feel so much more than I did with the boys like I want to stay close to K all the time. I suppose because it seems so "normal" and do-able now...I want to treasure this time as I don't know what lies ahead!If you are reading this, know that I appreciate you so much. You've probably noticed that this website has become my own place to process what's going on in our family. Please understand that if you care enough to be reading these entries, then I am happy to be sharing them with you. I truly believe that I have been strong, thus far, because of all the care and concern that you all have shown. Thanks for being in this with us. Like they say, "It takes a village...."SUNDAY, OCTOBER 14, 2012 8:09 PM, MDT
Settling in
One week and some home with sweet Keira. Things are starting to feel quite normal....well, as normal as they do with a new baby in the house. Keira is eating fabulously and keeping her temperature up. She's not so easily overstimulated anymore, it doesn't seem. So, when visitors come, aside from hand washing, I don't feel like people need any special instructions for handling her, which is great.
Ronin adores his little sister. He is fastidious about using the sanitizer and has taken on the roles of pacifier putter inner and stuffed animal provider. Liam admires from afar, though he has fed Keira a bottle and seems particularly happy with the new pace our life has taken on. Jeff is working full time and is eager to provide middle of the night bottles so that I can sleep. I am doing pretty well. Today, actually, was one of the harder days I've had in a while. I had a dream that I couldn't stop crying and part of me is afraid that's what I would be if I wasn't so busy with the boys and bottles, etc. etc. I have fallen totally and completely in love with Baby K, but I'm not quite sure of how to handle the anticipation of important things NOT happening for her.I've had steadfast and conscientious helpers all week. Like I said on Facebook, my life has been feeling wonderfully normal (the fact that I'm doing none of my own errands, cooking, or laundry notwithstanding). I am so blessed to have all of this support. Not sure what I've done to earn this.I'm going back to work tomorrow. I'm pretty anxious about that, though it's only 6 hours this week. We'll see how it goes. Keira will be happy to spend the day with her great Grama Joy.TUESDAY, OCTOBER 9, 2012 10:26 PM, MDT
Sigh. Caring for sweet Keira is not so much different than caring for any other newborn at this point: a lot of diapers, a lot of sleeping, nursing/pumping/bottle feeding every 3 hours. There are A LOT of extras so far, though. Medications, phone calls, paperwork, appointments.I keep telling Jeff that I'm surprised I haven't fallen apart yet. I think I owe that in large part to all of the help that I've had. If I had two adults besides myself in the house at all times, I don't think it would be too much. My brain is full to the brim of constantly organizing and scheduling help. I'll take that, though, over having to do it all myself (which I couldn't).This week we had a pediatrician appointment. Apparently Keira likes it at home because she weighed 6 pounds, 4 ounces, having gained faster than she had been in the hospital. Tomorrow we have a blood draw then an appointment with the infectious disease specialist and later an interview for SSI. Next week is another hearing test. Hopefully, within a few weeks, things will become more predictable and settle down. I feel like I'm barely seeing Liam and poor Ronin has oh-so-much energy which seems incompatible many times with caring for Keira. I am dreading going back to work next week.It is a relief indeed to have Keira at home. No more driving back and forth. She seems so much more like OUR child. It's amazing how much I am changing and flexing and learning already. As my mom said, my "mama bear" instinct showed itself already when a nurse haphazardly measured my daughter's head circumference. I'm seeing more and more that the hardest part of having a child, so far, with "special needs (I think I hate that term)" is what it forces ME to change. MY expectations. MY beliefs. MY role as a mom. MY assumptions about a lot of things.Keira is just fine with herself as she is and probably always will be. All and all, things are going well so far.We have an unbelievable amount of support. I hope you know how appreciative we are, even as we are learning to be a bit more bossy and direct for when and where and what we need. We know that everything you do for us is a gift. We still have a lot of needs and help is going to be appreciated on an ongoing basis. If you are interested in assisting us out, here is what comes to mind at this point:-people to be with me at home Monday through Friday in morning and afternoon shifts to help with Ronin or both boys or Keira or chores around the house. Let me know if this interests you.-let me know when you are out and about doing errands. I often need groceries or errands that others can do for me.-dinners and healthy snack foods are still really helpful and appreciatedTaking photos has been pretty low on my priority list, but I hope to get a few new ones uploaded here soon.SATURDAY, OCTOBER 6, 2012 5:10 PM, MDT
Home
Overall the last 24 hours have gone pretty well. The boys were SO excited to have their sister home. They'd even picked her a pumpkin from Grama Joy's garden. Its been a challenge to keep Keira as well regulated as she was in the hospital. We think we overstimulated her a bit last night and it's been hard to keep her warm enough. We'll get it right, though. We have plenty of help right now, which has been wonderful.
I realize I took for granted how much I learned in the NICU. K isn't your average newborn. More than I thought, I need to educate people about how to be with her (ie. less jostling, noise, etc) as compared to other babies. That's doable, though.A photographer came and snapped some shots before we left yesterday. Enjoy!FRIDAY, OCTOBER 5, 2012 11:18 AM, CDT
Homecoming day!
I am soo excited to bring our little one home today! I woke up early and found myself nesting, which, as Jeff noted, is much easier when you're not pregnant!
Came in to the NICU this morning to learn that for the first time ever, Keira "nippled" all of her food through the night! This means she's relying on the NG tube much less!
I wish that we could throw a big welcome home party and invite all of you who have not gotten to meet her and all of you who have been sharing this journey with us. Unfortunately, that's not in Baby's best interest, so that will have to wait for another time. Once we get home, as Jeff said, we'll try to keep visitors at a "steady trickle."
In regards to visitors and caregivers we have good news. We have finally nailed down that Keira is not toxic!! This is excellent news as between her infection and her chemo-labeled med we had once been told we needed to glove and gown for all kinds of contact with her bodily secretions, requiring a lot sterilization of stuff at home and extra careful disposal.
The only precautions people need to take are to wash with soap and water after coming into contact with her medications or bodily fluids. Also, if you are pregnant (particularly in the early stages) or immune-compromised (like Lupus or HIV), you may not want to visit because contracting CMV is more risky for you.
I felt like kicking my heels today as I walked into the NICU. We may have missed that mom-and-dad-holding-baby-immediately-after-delivery photo, but today we'll finally get a going home photo and maybe even a family picture!
We'll keep you posted about the journey ahead.THURSDAY, OCTOBER 4, 2012 2:04 PM, CDT
It's a good day. Excited to bring Little Miss home tomorrow. All seems to be on track so that she can do so. She's picked up her weight gain again (after learning that the caloric content of my milk is more than fine--yay me!). I have learned how to insert her NG tube and administer her meds. In fact, she LOVES her new oral med (say "valganciclovir" 3 times fast) and is getting her PICC line removed today.
Mom and Liam are both with me today. Liam and I went on the campus' Wellness Walk trail this morning--before we are out of opportunities. He is sure he wants to come back and visit the hospital after we're discharged. Actually, I kinda get that. The nurses have been so wonderful that I dare say the NICU has been fun sometimes.TUESDAY, OCTOBER 2, 2012 6:07 PM, MDT
Getting ready
Tomorrow I get to start practicing being Keira's primary care giver. I'll be at the hospital all day tomorrow and Thursday with the plan of bringing her home sometime Friday. Of course that all depends on whether we can get her going on the oral version of the IV med she's been on. Apparently it's harder to come by than they first thought. Today the NICU pharmacist told me they found some in Salt Lake and were sending a courier to the airport to get it! Only the best for our little lady!
Anyhow, the next couple of days should be interesting. I'll be getting the lowdown from everyone- MD, RN, OT, nutritionist, ID, social workers, etc. Thankfully my mom is going to join me for much of the day tomorrow to help me soak up all this information.
Thank you and thank you to ALL of you for your care, concern, and help through all of this. I know some of you feel kinda helpless in this situation, but everyone's expressions of love help me feel like Keira will be part of a wonderful community of family and friends. And that makes the future feel much less scary to me. Don't go anywhere....SUNDAY, SEPTEMBER 30, 2012 3:36 PM, CDT
We've been having a very fun family-minus-Keira weekend. Took the boys to Wahooz last night. We all visited K this morning before heading to a baby shower hosted by the NNH ladies. It was kinda therapeutic to do a little art project. We all decorated onsies and bibs for Keira. Notice the complex figure and the ink blot!
SATURDAY, SEPTEMBER 29, 2012 12:26 PM, CDT
MRI Results
I suppose with all the good news- about her eyes and ears and feeding and weight etc.- we dared to hope that we might see something unexpected from the MRI.
Unfortunately, this was not so. Even an untrained eye could see the differences between a typical brain and our girl's. Put most simply, her overall brain mass is quite low and mass is what we all need for learning, well, everything. The doctor says to "expect global developmental delays particularly in motor and cognitive skills." We just have to wait and see what happens (or doesn't) as she grows. Her developmental problems are likely to be severe.
She's still beautiful. She's still a fighter. She still gets to come home soon.FRIDAY, SEPTEMBER 28, 2012 12:28 PM, CDT
Keira in her baby hospital gown on her way to the MRI. Jeff and I will meet with the doc about the results tonight.
FRIDAY, SEPTEMBER 28, 2012 12:25 PM, CDT
Last night Keira had her newborn hearing screen. Would you believe she got 100% in both ears? She did! This was very unexpected. Go, Keira, go!THURSDAY, SEPTEMBER 27, 2012 12:34 PM, CDT
Keira is doing great! She is now in a crib and is nursing and bottle feeding much better. Discharge is waiting on K's ability to self-feed (not through the NG tube) the majority of her daily food.
Tomorrow is Keira's brain MRI. This will give us a better idea of how her development looks so far. I'm looking forward to this information, but it's pretty scary too.
On Monday we'll review K's feeding over the weekend and make a tentative plan for discharge. The hope is that she'll be able to come home sometime next week!TUESDAY, SEPTEMBER 25, 2012 12:06 PM, CDT
I'm sitting here in the NICU with this heavenly baby girl asleep on my chest. I know she knows that Mama's here cause she settles down as soon as I take her in the morning. We've settled into a pretty workable routine, however it continues to be exhausting and the boys continue to want more Mommy time. Thank you to everyone who has done odds and ends for me so that I can maximize my time with them.
Overall, we are coping fairly well, I think. Jeff and I both struggle to do as much work as we need to be doing. I feel somewhat guilty devoting my thoughts to anything besides Keira. Yesterday, Ronin and I went to Fred Meyer and it felt so good to be doing something "normal." On the other hand, the day before Jeff and I went out to dinner and I had a strong feeling that I didn't want to be out in public with all these "normal" people.
It feels quite peculiar being out and about- with my conspicuously un-pregnant body and no baby to show for it. Sometimes it's hard to sleep for that reason, too, so I gladly welcome Liam or Ronin into my bed if Jeff is up late. The other day, as I left the NICU, I had this momentary and overwhelming sensation that I'd forgotten my baby.
All that said, Keira is doing well. Every time I start to worry about something, within hours she shows me she's just fine. Every day her weight is up, she's eating more, her platelets are lower, the temperature in her "spaceship" is lower, etc etc.
Dr. Merchant feels that K will probably be able to come home within a couple of weeks. I am somewhat nervous about this transition...hoping it will afford me more time with the boys but knowing I'll be caring for Keira full time. We won't quite have to be quarantined in our home, but she will be fragile in some senses. Dr. Merchant said not to be surprised if a simple cold lands Keira back in the hospital.
Please continue to keep us in your thoughts and prayers. It means more to me than I ever would have thought.FRIDAY, SEPTEMBER 21, 2012 11:04 AM, CDT
5 pounds!
We reached the 5 lb milestone today! To celebrate, I put Keira in her first outfit from home. The newborn size supposedly fits 5 to 8 pound babies.
Other labs continue to go in the right direction and Keira is taking a bottle when I'm not here more and more.
It's my impression that discharge waits for Keira to put on weight and be able to sustain it without the NG tube. This is probably a couple of weeks off.
Jeff and I really appreciate everyone's thoughts and prayers. Every day we are surprised by the thoughtfulness coming from all directions. Jeff and I have been praying for strength, wisdom, courage, and patience. I told him the other night...people keep telling me they are praying for miracles. Though I don't think my theology will let me pray that prayer myself, if others can on our behalf, then by all means!WEDNESDAY, SEPTEMBER 19, 2012 5:01 PM, MDT
Slow and steady
All of Keira's numbers continue to move in the right direction. She may break the 5 pound mark by tomorrow! She's learning to take the bottle and she's more and more alert every day. It was hard for me to leave her this morning, in fact, because she was wide awake in her isolette (read incubator, cage, etc.).Several of you have asked how my date with Liam went. We had a lot of fun that day. I had planned to take him out to eat and to do something fun in town, but he asked if we could just hang out at the hospital. Isn't that sweet? You'd have thought it was Disneyland- he was so excited to help the nurse with Keira's milk, ride the elevator, eat in the cafeteria, and use the vending machine.Ronin also loves his sister fiercely. He has conquered the arduous feat of sitting still for 5 minutes so he can hold her. Unfortunately, I'm afraid that his mix of curiosity and acrobatics is such that I will not be able to leave him alone with Keira for a second.Jeff and I are hanging in there. The days seem to all run together, but are distinct somewhat in terms of how well we feel we are coping. Some days we feel like everything is under control and others we feel, well, the opposite.We continue to feel incredibly supported by everyone who knows about Keira. The calls, meals, errands, company, babysitting, gas money, etc, have all been more helpful than I would have imagined. Just please don't forget us in the months to come. Keira's health is expected to be a-okay soon, but then we'll be embarking on a whole new chapter filled with therapy, therapy, therapy, and a lot of unknown.TUESDAY, SEPTEMBER 18, 2012 8:45 PM, MDT
Another quick update
Got Keira's updated labs today and she continues to trend in positive directions. Her platelet count was up to 57. She weighed in at 4 pounds, 14 ounces today, so she is officially above her birth weight.JeffMONDAY, SEPTEMBER 17, 2012 11:27 AM, EDT
Morning Update
Keira continues to do well. She has reached her birth weight of 4 pounds, 13 ounces. Her lab work continues to be trending in the right directions. She continues to eat well. We still have hearing testing and a brain MRI upcoming in the next week or so, but as far as her immediate health all things are positive.
JeffSATURDAY, SEPTEMBER 15, 2012 7:36 PM, MDT
6 days old
Sigh. I. Am. Exhausted. The initial excitement has worn off. We are just waiting for Keira to continue to get better. Very positive , but I think it's catching up to us. I almost decompensated today over a couple of boogers in Keira's nose (PLEASE don't get sick, Keira Elise!). The boys, though remarkable troopers all week, are fraying around the edges. Jeff...well, he's just amazing...taking good care of all of us and practically taking it all in stride. I'm planning on taking Liam on a special date tomorrow. This will be good for both of us as long as I can contain my anxiety about not being at the hospital. Thank you, thank you, and thank you again for all your care and concern.
The picture here is of the big brothers today after a day of spoilage by Grandma. Aren't they handsome?SATURDAY, SEPTEMBER 15, 2012 10:50 AM, CDT
Just a short update. Good things happening for Keira. Bilirubin is down, platelets are up again, and she gained some weight for the first time. She also got to meet her great grandma and papa last night.THURSDAY, SEPTEMBER 13, 2012 9:38 PM, MDT
How to help us
So many of you have so generously offered to help us in any way you can. We appreciate these offers so much. Thanks to those of you who already have mowed our lawn, made our dinner, made lunches, taken our clients, babysat, cleaned my house, and gone to the store for me.Please just keep praying for us, and offering your help when you feel up for it. We will continue to need support in the weeks and months, quite possibly years, ahead and will let you know what you can do when we have stuff we can delegate.I was taught never to ask for money, but the truth is finances are going to be incredibly tight. Keira's condition is serious enough that she automatically qualifies for Medicaid and SSI, which will help immensely with medical bills. Even so, it may be hard to make ends meet particularly since Jeff and I both will be taking much more time off of work than we originally planned. IF you feel the desire, financial help in the form of gas cards (we're driving to Boise at least twice a day) or grocery gift cards would be put to use for sure.THURSDAY, SEPTEMBER 13, 2012 9:24 PM, MDT
Update from Bekah
What a long way we have come in 4 days! The things we are rejoicing about we never would have imagined last week.Keira's birth was fast and furious. Frightening really. I don't know that I'd wish that on anyone. Thankfully, the amazing nurse Katie was willing to catch Keira since the doctor was still 45 minutes away! So, while I was recovering from the fact that I'd actually just given birth, Jeff was learning that our precious little girl was under 5 pounds, had low blood sugar, merconium in her fluid, couldn't keep her temperature up, etc. And things kept speeding along. Next we found her platelets were low, then she needed an ultrasound, then transferred to Boise. Looking at the ultrasound, even Jeff could see that Keira's brain didn't look normal and we started to learn about CMV.CMV, though curable, leaves its footprint on the brain. It could lead to deafness, blindness, autism, cognitive impairment (mental retardation), movement disorders, cerebral palsy, learning disabilities, etc. etc. The first 24 hours were very difficult for both Jeff and me. It felt like a dreadful irony that Jeff and I work so closely with kids with these issues for a living. I kept thinking I love working with these parents, but I never believed I could do it myself.The last few days have felt unbelievably better. Jeff and I both feel like we've wrapped our heads around the possibilities much more. We keep hearing encouraging news, and we've been able to hold Keira much more, which helps, because she's so darned cute. Our friends and family have been holding us up with incredible love and support. We feel particularly lucky to work with the amazing people we do, who not only love us like family, but are highly skilled at all of the therapies that our little girl may eventually need.We appreciate all of you more than you know. Please understand that even if we haven't returned your calls and texts, they still mean the world to us.THURSDAY, SEPTEMBER 13, 2012 1:17 PM, CDT
Update for this morning. Keira is doing well. We got some good news in that her platelet count is going up and her bilirubin level is going down (even if slightly). She is doing well and Ronin got to hold her this morning. We'll keep everyone updated.WEDNESDAY, SEPTEMBER 12, 2012 10:50 PM, MDT
So things have been a little crazy over the past 3 days. Keira was born in a hurry (we were at the hospital less than an hour). She is small for her gestational age and there were some risk factors about the delivery. Long story short, we were transferred to St. Al's in the middle of the night for a higher level of care. Basically, St. Al's Nampa (Mercy) did not have the available diagnostic equipment to begin the process of figuring out why she came early and was so little. Once at St. Al's Boise we were able to get a brain ultrasound to look for CMV related findings and to start the cultures for the virus.As of today, Keira was formally diagnosed with congenital CMV after her blood cultures came back positive. She had some early risk factors, like low blood sugar, low platelet counts, and was having trouble keeping her body temperature up. Additionally, she became jaundiced and her liver and spleen are enlarged. As we understand it these are consistent with active CMV infection and will resolve over time with proper treatment.Once at St. Al's she was started on a course of anti-viral medication to treat the CMV infection. A course of medication she will likely be on for about a year. We have also begun the process of assessing the various outcomes associated with congenital CMV infection, such as blindness, deafness, and other neurological conditions. Today she was seen by ophthalmology and everything looks good with her vision (so far). Also, the nurses report that she is responding to sound which is a good sign (she will have a formal hearing evaluation before leaving the hospital).She is nursing well and everything seems to be progressing well. She is also gorgeous and we will be updating the site with more pictures as much as we can. We appreciate all the support we have received from everyone. If you don't get a call or text back know that we love you and appreciate you reaching out to us. Also, don't hesitate to text or call, we won't always pick up or respond, but the messages have been very helpful over the past few days.I'm sure I'm missing a few things, but Bekah and I will keep things updated as we can.Overwhelmed by your love,JeffWEDNESDAY, SEPTEMBER 12, 2012 10:41 PM, MDT
What is CMV?Here is a link that has more information about what CMV is and how it effects infants born with the virus.Here are more links for more information.
Caring Bridge Journals
Subscribe to:
Posts (Atom)
No comments:
Post a Comment