Rollercoaster of emotions

It is so hard to think that a little over a week ago I was writing about the remarkable progress our little guy was making... after some great strides earlier last week, we thought that he would be on the up and up from there!  During the very short-lived high, we were able to see him outside of his isolette in a crib and not needing his oxygen cannula - we even started discussing the possibility of transporting him back to Phoenixville too!  Landon started to act out with an increase in brady events (heart rate drops) and desating very frequently (poor oxygenation), so the oxygen cannula and isolette quickly returned.  It took the nurses a few days to balance his oxygen in order to stabilize his breathing and we are still trying to minimize his bradys.  In trying to remain positive, I like to think this was Landon's way of being the boss the nurses say all NICU babies are by letting them know that he wasn't ready for all of that just yet.

As parents watching his events and experiencing the few steps backward really plays with your emotions.  We also began realizing that a couple of the nurses caring for Landon didn't fully support the quick decisions to get him off the oxygen and caffeine immediately and at the same time as one another at that.  Noticing that the nurses were not on the same page has been very frustrating for us.  It is a tough position to be in because clearly Lance and I are not the medical experts; however based on the quick changes and Landon's response to those changes it seemed like common sense to us that it was too much too soon for him rather than just making gradual changes... however there is very minimal input we can provide as these decisions are being made during the doctors rounds.

So as of this morning, Landon is still experiencing significant brady events that require some sort of stimulation to get his heart rate and breathing back to the normal ranges again.  It makes your heart sink when you witness these events as his face will turn a blueish color, the monitors begin alarming at a much louder and faster rhythm than the normal sounds of the machines we have gotten used to, and several nurses rush over to help despite who is actually assigned his care that day.  During Landon's first two weeks, he would only experience about 2 bradys in a day, none of which required the extra stimulation.  Now he is up to about 10 with a few that require stimulation, so we are trying to figure out why he seems to be regressing.

After not making any significant changes to medical plans over the past few days and not seeing much progress on his own, the nurses are discussing the possibility of Landon needing to be back on the caffeine as well as planning to solve for his anemia.  To solve for the anemia, he may need a blood transfusion in order to increase his blood count so then he will not have to work as hard to produce it on his own so then he can focus on stabilizing first as his most immediate goal.  We have also been told that the bradys may be a result of the anemia so in turn the transfusion may help solve for the brady events as well.  As hard as it is to know our little guy may need a blood transfusion, we are hopeful that this may help him become more stable again.

Lance and I are just wishing and waiting for the day that his only NICU goal will be to feed, grow and go home.  The past few days with the ups and downs have been very difficult and we want nothing more than for Landon to be stabilized.  We hate to feel like we are trying to rush his progress though as we know everything takes time, especially considering that he should still be in utero for another 6.5 weeks.  Patience is something that we are learning is one of the most important qualities to have as a NICU parent... and let's just say we are working on that!

On another note, I've been meaning to share this story... I was talking with my sister, Liz, earlier in the week just chit-chatting about the weekend, her birthday plans, etc. and for some reason we started talking about church.  She attends The Rock Church in San Diego - she has grown really fond of this church as the services are always inspiring, dynamic and interactive.  On Sunday she was part of a group that volunteered during mass to share their recent experiences in which they needed to ask God "what do you want me to do", which was the message of the service that day.  She shared with the group some of her personal situations, including Landon's early arrival, that had her reaching our to God more frequently.  Liz mentioned to me how at first she was wary about volunteering to step up in front of the entire church, but how glad she was that she did based on what happened at the end of mass.  The pastor always ends service with a community prayer, but this time he added a special prayer specifically to those who volunteered.  During the closing prayer, he made a strong emphasis on our little Landon praying for his continued development and long-term health.  Liz was amazed to hear her nephew, Landon, being mentioned for everyone to pray for and how much joy it brought her.  To think think that prayers for Landon are coming all the way from San Diego from people with little to no connection to our lives is absolutely astonishing and brings tears to my eyes at every thought of it!  As Lance mentioned in his last post, we are incredibly thankful for all of the continued thoughts and prayers, words of encouragement, helping hands, etc that are supporting us so greatly.  We could not do this without you all and everything means more to us than you know!

Landon is praying, too!