8 Weeks Old - Put a Bow On It

How Aberdeen is Doing:

She has finally gained some weight! Abby is now a whole pound above birth weight!!! She is still vomiting a fair bit, but now that she is actually putting on some weight, the doctors aren't quite as worried about it. She has started smiling a lot this week and even rolled from her tummy to her back during PT! It's been a week full of milestones! The doctors will want to make sure she can consistently gain weight on what will be our home feeding regimen before letting us leave, but it seems like that is now in the foreseeable future.

How We're Doing:

Okay.

After waiting for three and a half weeks, we finally got into the Ronald McDonald House on Thursday. Which, if we weren't already, officially makes us "hospital people."  For those not familiar with this wonderful program, RMH is an apartment-like set-up for people whose kids are in an adjacent hospital. They provide housing and some meals free of charge and really go out of their way to make things a little easier for families in difficult situations. Next time you see one of their donation boxes, I encourage you to drop in some change, as what they're doing is invaluable.  

Because getting back to the house has been so hard, we've started discussing the prospect of moving somewhere in between Cincinnati and the base. So far, family and friends have been caring for our dogs (I've seen them a total of three times in the last four weeks), and we really miss them.  Not being able to get home on a regular basis is taxing, and we simply don't think it's feasible to continue operating this way long-term.  We're early in the process of looking into moving, but wouldn't mind help if anyone knows of opportunities to rent in the Springboro to Mason area. 

Emotionally, this admission has been very different than our first. Getting Abby's feeds and failure to thrive under control has been a painstaking process, that has ultimately required a switch to straight formula. While it was something I suggested trying, and am thrilled is working, it's also very hard to accept that, as her mom, I couldn't provide her with what she needed. I already struggle with feeling like I somehow failed her while pregnant, and that I'm continuing to fail her even now. Genetics has assured us that this isn't the case, that her conditions were just something that happened, but I can't help but assign myself some blame. It's just hard. Both Jameson and I do our best to put a positive spin on things, as much for other people's benefit as our own, but sometimes we have to admit that it's just hard.

Jameson did some cathartic writing this week that he requested I share. It's hard for even me to read, but it's an accurate description of how we often feel, and especially how he feels as he tries to navigate splitting his time and attention between here and work.  He's been an amazing dad and husband through everything, but I know the stress is starting to take its toll. If you pray for Abby, please pray for him as well. 

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From Aberdeen's Father

My daughter has craniosynostosis, hypertrophic cardiomyopathy with an outflow obstruction, a large aortic septal defect, a persistent patent ductus arteriosis, and a small ventricular septal defect. She had neurosurgery at 5.75 weeks of age. She has been fed through a feeding tube or an IV since birth. Her endurance is so limited by her heart condition that she cannot feed by mouth enough to live. She has lived in a hospital for 43 days of her 53 day life. My wife has lived in the hospital with her the vast majority of that time, which has involved CT scans, an MRI, dozens of echocardiograms, and screaming IV placement sessions, 0400 heel pricks for blood we know will hemolize before the test can be run, vomiting while food is pumped into Aberdeen's stomach, and other instruments of pain. I cried in the parking lot yesterday after telling my friend that I will likely be moving 35 minutes south of where we live to be closer to the hospital. I’m a grown man. My adrenaline is wearing off.

Everytime I am asked "how is your daughter doing?" "how is her mom doing?" all of the above runs through my mind. How do I give you a 25 second answer that ends on a happy note? How can I be honest about how we are doing 37 times a day without completely losing my ability to function in a work environment? "Well, she had brain surgery two weeks ago and we've been in the hospital for 3.5 weeks. Nope, her heart condition won’t be healed anytime soon.” Awkward pause, while the person figures out what to say… “But her head looks good,” I say to give them an escape. Then, rinse and repeat everyday hour of everyday for the longest 7.5 weeks of my life. 

Aberdeen isn’t going to die tomorrow or this week, nor is she going to get better tomorrow or this week. I can’t put a bow on this situation for you that allows for a five-second CNN positive soundbite. Am I angry at God? Nope, not really. I knew (better than most) that this was a chance when we decided not to adopt and try to have a biological child. I’m fine with learning from this situation for the rest of forever. Did I push Bethany to have a biological kid? Sure did. Do I feel like it was my ego that contributed to Aberdeen’s problems? Definitely. Had I just been alright with however long it took to adopt we may not have been in this place right now. Does my lack of control (perceived or otherwise) make this even more difficult? Yep.

I was good at my job, but I am getting worse. I am like a drug addict who can’t shoot-up for ten hours a day, while dealing with billion dollar decisions. My temper is getting shorter.

And yet, like a high school student wanting to add a killer conclusion to my five-paragraph essay, I still want to give you a happy ending.

Jameson took this picture while driving back and forth from the hospital. Seemed appropriate.

7 Weeks Old

I'm a couple days late on this post, but Abby is now 7 weeks old! Sometimes I can't believe she's that old already, but most of the time I have a hard time grasping that it's ONLY been 7 weeks - so much has happened! With everything these past 7 weeks have brought with them, this verse really jumped out at me:

Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus. 

- 1 Thessalonians 5:16-18

Though the time since Aberdeen's birth has been incredibly trying, we have SO much to be thankful for.  I mean, look at this face:

Abby is healing beautifully from her skull surgery! The neurosurgery team comes in every morning (at the crack of dawn) to check on her incisions, and have nothing but great things to say about how she's looking. Now that the post-op swelling has gone down, you can see a little of her old head shape returning, but it's still a vast improvement in that we know that her brain now has room to grow!  PT, speech, and OT have been pleased with the strides she's making, and we're so thankful that because of this surgery we hopefully bypassed some problems we may have run into in these areas down the road. 

While Abby is recovering from her surgery well, she is still struggling to gain weight. The doctors have been adjusting her feeding plan daily to try to optimize caloric intake, but her heart is working so hard she just burns straight through the calories she's taking in. This requires an increase in either the calorie density of her formula or the volume of her feeds, both of which make her sick and contribute to her lack of weight gain. It's a painstaking process to go through, attempting to find the balance of what she needs and what she can tolerate. We haven't been making much progress on this front unfortunately, so we'll probably be here for a while still. Luckily, we're getting into a groove here in Cincinnati, and being here doesn't feel foreign anymore.

While we are incredibly thankful for ALL of the help we've received recently, I want to single-out my mom who was out here for nearly a month helping out once Jameson had to go back to work. I love you mama, and truly cannot express how much I appreciate you and the sacrifices you've made to make our lives a little easier. Thank you.

6 Weeks Old

Aberdeen is six weeks old today, and has moved back to the cardiac step-down unit after gracefully recovering from her cranial surgery in the CICU. She is acting more like herself little by little, and has been enjoying some well-deserved snuggling.

We are completely in awe at the difference this surgery has already made in Abby. Immediately after the operation was completed, the craniofacial team ended our excruciating wait by letting us know that the surgery had gone well, but was so complicated that it "took a year off their life." Once they were able to remove the fused sutures, they said her brain essentially sprang back into place, indicating that it really was cramped in there and that we would have been looking at some serious intercranial pressure issues later on if left uncorrected.  This helped solidify in our minds how necessary it was to do this procedure now. She's probably still going to need another operation in about six months to fix any problems that pop up as her skull reforms, but we're already shocked at the improvement in her head shape. It's possible that just giving her brain some room could help with some of her feed tolerance problems we were originally admitted for, and we are so excited to see what improvements Abby might encounter over the next days, weeks, and months! 

We could not be more thankful for the prayers she received throughout this ordeal, the skill of the surgeons, or the grace that God has provided - we are feeling so incredibly blessed. 

Our beautiful baby a couple days before surgery vs. one day post-op:

Out of Surgery!

We just got word that Abby's surgery has been completed and everything went well. Because of her heart condition they will take her off anesthesia very slowly and have her recover back in the CICU. We're still waiting to go back and see her. Thank you all so so so much for your prayers. 

Surgery #1 - Suturectomy

***Abby's Surgery is now scheduled for Friday morning***

It looks as though Abby will be having her first cranial surgery this Saturday...which is not the surgery we thought she'd be having this week.

Since being re-admitted to CCH a week ago under the diagnosis of "failure to thrive," we'd been working under the assumption that we were heading toward the insertion of a G-tube. This is a surgically implanted feeding tube that would ultimately be a safer option for Abby as she grows and becomes increasingly mobile. They needed her to show that she could tolerate her feeds via her current feeding tube before this procedure could take place, but the doctors were optimistic that it would be a much better arrangement for her in the long run. We'd spoken to GI a number of times, as well as the pediatric surgeons, and her operation was to take place on Thursday. I signed the consent forms this morning, acknowledging our willingness for her to undergo this procedure, only to have the rug pulled out from under us when neurosurgery came to visit this evening.

After having an MRI of Abby's brain done this afternoon, the craniofacial team determined that it was necessary to take steps to release pressure in Abby's skull as soon as possible, lest it start negatively impacting her brain. Due to the severity of her craniosynostosis, she will be having an endoscopic suture release this week, in order to allow her brain to grow until she can have the more extensive CVR surgery performed when she is at least 6 months old. The neurosurgeon explained that she may also require helmet therapy in the interim, but that remains to be determined. Because of the urgency of this matter, the G-tube will have to wait for another month or two as we see how Abby recovers from her skull surgery.

http://www.cincinnatichildrens.org/service/n/neurosurgery/services/craniosynostosis-repair/

Suffice it to say, Jameson and I were a little shocked by neurosurgery's surprise visit this evening, and are still sort of reeling from the news. When the attending neurosurgeon said "as soon as possible," I don't think either of us were really expecting that to mean this week.  We're glad that the craniofacial team is being proactive in the monitoring of her cranial pressure, and taking steps to alleviate potential problems now as we'd started getting nervous about the prospect of waiting 6 months to do anything about it. That said, we're obviously concerned about our almost six-week-old baby undergoing skull/brain surgery.  We know that this surgery is necessary for her well-being, but I anticipate we'll be doing a lot of praying this week. 

Abby has been her normal, adorable self through the chaos of surgeries being planned and cancelled all around her, and was an absolute rock star during her unsedated MRI today. We are totally enamored with our sweet girl and will be giving her lots of extra snuggle time before we head to the OR this weekend.

Little Victories!

After nearly five weeks, Abby has finally surpassed her birth weight!  She weighed in this evening at 3370g, 30g above her weight on August 10th, hooray!!!! 

1 Month Old and back to the hospital...

Aberdeen is one month old today! At this point in her young life she likes being held, looking at lights, and sucking on her pacifier. She dislikes diaper changes and sponge baths, and the jury's still out on tummy time. Most of the day she is content and alert, while overnight she likes to try her parents' patience by being a little miss cranky-pants. We still like her though :).  She is also back at Cincinnati Children's Hospital as of yesterday afternoon. Despite being on the feeding pump for 18 hours a day, she isn't gaining any weight and is still hovering just below her birth weight. She's been re-admitted to the cardiac step-down unit (we're even in the same room) to try to sort out this problem and get her to better tolerate her feeds. If strides aren't made in the tolerance of her feeds, the option of surgery will be brought back onto the table

We have mixed feelings about being back in the hospital. On one hand, we appreciate having the highly trained eyes of the doctors and nursing staff on our baby, making sure she's doing all right.  At the same time we are struggling with the wish that Abby had been making progress at home. It was such a relief to finally get to leave the hospital with our little girl, and we aren't relishing moving back into her hospital room. While the time we were able to spend at home was wonderful in many ways, it wasn't without its challenges. I had more than a few "I can't do this" moments, wondering why God would ask so much of Abby and of us. I wanted to be able to hold our baby without any tubes or wires attached to her - without the constant worry that something was about to go terribly wrong.  I know that some of these are the same thoughts and worries all new parents experience, but with the added stress of Abby's medical conditions, it sometimes seems like too much to bear. I look forward to a day a couple years from now when we can look back at this time in our lives and wonder what we were so worried about. Until then, we are trying to savor the enjoyable parts of each day with Aberdeen and trust that she's in the best hands possible.

Your thoughts and prayers are always appreciated.