Emmalynn & Aaron’s Story

Site created on September 30, 2018

Thank you for visiting our Caring Bridge site for our twins, Emmalynn and Aaron. We’ve tried to type a condensed version below of the events leading up to our pre-term delivery at Valley. Many people have so graciously asked what they can do. First and foremost prayers and keeping us in your thoughts. Beyond that, knowing that dinners are taken care takes a huge load off so that we can focus on the NICU, insurance, and all of that stuff (our sister-in-law, Abby, has graciously offered to set up a meal train for us at https://www.takethemameal.com/GBOG7021). Also, preemie clothes. Kylie’s were donated last time so we could use both boy and girl preemie clothes, and will donate all clothes again because it’s one of the biggest needs here at the NICU. Some people have very kindly asked about money and we are very fortunate due to savings and family, however, a donation directly to Children’s Hospital (they manage Valley’s NICU) in Emmalynn & Aaron’s honor will always mean a great deal to us (https://giveto.seattlechildrens.org/give). Words of encouragement and knowing that people are thinking about us and praying for us is most important and keeps us going.




While we had hoped to avoid the NICU this time around, we find ourselves here even earlier this time. It’s been quite the whirlwind. We consulted several doctors after Kylie, and were encouraged to try again. We were told about a 30% chance of repeat but also that we’d know what to watch for this time around. Given that we were hoping for a second child (we knew given the odds that we would not be trying for three), we decided to listen to the doctors and go for it. And, of course, we ended up with twins which kind of changed everything.




We were still lucky in some ways this time because some other symptoms brought us in due to an abundance of caution. We have the same hospital team that cared for us last time so they kept us, took care of us, and ordered some precautionary tests. Everything was normal and just when we were about to go home, Kimberly’s liver enzymes suddenly went up a little bit. So the doctors kept us for more tests, and soon they were convinced that she was in the early stages of severe HELLP Syndrome again. At 29 weeks, we were definitely in shock and a little scared.




We reached a point where Kimberly’s numbers were accelerating too quickly to wait any longer, so a c-section was scheduled. The same doctor that delivered Kylie was able to deliver the twins, so we were very happy about that. She took extra good care of us. Emmalynn was delivered first followed by her younger brother, Aaron. At 3lbs and 1oz, they were a good weight for twins at 29 weeks and actually weighed exactly the same down to the gram. Kimberly was awake this time around so she was able to see each baby before they were whisked off to the NICU where I went to be with them while mom’s second surgery was completed (a tubal ligation). We are definitely done being pregnant.




Don’t get me wrong, we are so excited for our twins and to become a family of five, but for Kimberly pregnancy is far too risky to attempt again. We are praying fervently for Emmalynn and Aaron as well as for Kylie during this time. We are anxious to get everyone safely through this process so that we can all be a family together at home. Kimberly’s hospital stay was extended due to liver enzyme numbers that climbed for a while before finally stalling and starting to come down. We were briefly sent home but found ourselves back in the emergency room at 2 AM due to high blood pressure, so the initial hospital stay will end up being closer to two weeks. We are grateful for everyone’s prayers for all of us and hoping to soon be 100% focused on the twins healing process for the remainder of their 10 weeks in the NICU.

Newest Update

Decisions

Journal entry by Kimberly Ferguson —

The hardest updates to write are the ones where we have more questions than answers. The antibiotics Aaron was on were definitely helpful and his respiratory status is much improved, however he is clearly going to need a different antibiotic to clear the infection. As the week has gone on his temperature has trended higher again and while he isn’t feverish most of the time his temp is 99.5-100 degrees pretty much around the clock. This, his nasty cough, and significant fatigue tell us he isn’t done fighting this off yet. We are hoping the last bit of antibiotics will get us through until Monday when we can get an updated prescription more easily. Currently any level of activity that involves being on his feet sets off a nasty coughing fit and he tires out very easily. We had to take Kylie to an orthodontist appointment yesterday and he fell asleep within 5 min in the car, fell back asleep on my lap in the very busy waiting room, and then fell back asleep again for the ride home once I buckled him back into his seat. Not typically what you would expect for a five and a half year old.

All of this has highlighted for our pulmonologist that we don’t have all the tools we need for the fight for Aaron’s health and she gave us a lot of options for things we can explore moving forward. We are so grateful that they aren’t just willing to settle for “hopefully he’ll outgrow this” without making sure we have looked into and tried many things. But that is leading us down a path of options that are less obvious to try, and potentially more invasive/more side effects so now we have to sort through the pros/cons of each potential and decide what to do. To summarize, while Aaron’s immune system appears to be functioning within the realm of normal, some of his numbers are in the “just barely” category indicating a visit to immunology might be wise. Hopefully that will help guide us as we consider trialing a medication that might help decrease overall inflammation…but at what cost to his body long term? Also on the table is more extensive imaging such as a CT scan of his lungs which we will likely do, and potentially another scope/to evaluate his upper airway again which would involve general anesthesia. This last option would be a last resort at this point since it is invasive, has some risk, and possibly not much to gain from doing this yet again. We have an appointment with his ENT in two weeks where we will discuss that last option at length so we would definitely appreciate prayers that it will be clear if there is a reason we should do this again.

Thankfully we are all sleeping better, and while the 3 kids all still have awful, asthmatic coughs, it isn’t keeping them awake at night. The sleep is such a blessing and hopefully helping all of us toward full health again. Other milestones this week were Emma losing her 2nd tooth, Kylie not needing to have her expander turned anymore for her orthodontics, and the twins having their Kindergarten orientation. It’s been a full and busy week. Here’s hoping that next week brings full recovery from this nasty, nasty virus and Aaron’s infection as well as a break from this relentless sick-season.

Please Pray for:
1. The right antibiotic for Aaron to get rid of his infection
2. Clear guidance for making the best medical decisions for Aaron
3. Praise for sleep and improving health!
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