Sunday, September 30, 2012

The Calm and Then The Storm

NOTE: The first 5 days and stories can be read HERE.

NICU Day 5 (Friday, September 28):
Oliver and I finally decided on a name.  It was really hard to do because when you have a baby without complication you spend your days in your recovery room relaxing and holding and observing and watching your new baby.  It took us just over a day to name Addison - and we were able to spend every minute with her.  When Baby Hansen #2 ended up in the NICU just 5 hours after birth - there were all kinds of restrictions and limitations and I wasn't even able to see her for the first several hours - let alone hold her.  Our lacking ability to really observe her and hold her and feel connected to her made choosing a name very difficult.  But after 5 days we finally decided to name her Claire Whitney Hansen.  She is named after Oliver's paternal grandpa,  Farr Whitney Hansen.  He is a wonderful example to us of family devotion and love and we are honored for her to have such a legacy in her name.  
Here's her dad consulting one last time to ensure she's okay with the choice.  
Oliver and I spent most of our day feeling great about being in the NICU and feeling like everything was coming closer to an end.  The standard antibiotic treatment for pneumonia runs 7 days and so we had been talking to the nurses about what we need to do to be discharged.  Things like CPR training, a 2 hour car seat check, Claire gaining weight for 48 hours, etc were the hurdles we felt were the last as part of this journey.  Because Claire received a PIC line we were transferred to the care of the Neonatologist.  Unlike the pediatric rounding that occurs in the NICU, the neonatologist rounds on the sickest babies first and then visits with the parents of the more well babies later in the day.

We weren't surprised the lunch had past and we still hadn't seen the doctor because the NICU was buzzing with complications that day.  At about 3 pm Dr. Ellen A. Liu came to meet with us.  Oliver asked if we were still on track to head home on Monday and it seems that things just got difficult from there.

Dr. Liu expressed that she has some very uneasy feelings about the test results from early in the week.  She explained that she was impressed by Claire's test results - to which I inquired - impressed because they have come down so well?  Nope - impressed because the .8 I/T ratio score is extraordinarily high.  With below .2 being normal, .25 being maybe okay, .5 being WOW, and .8 being impressive. Claire had just been transferred the previous day to the care of the neonatology staff and Dr. Liu was spending time reviewing her charts and labs from the week.  They had been making her feel uneasy and uncomfortable all day and so she would read them, walk away, go back to them, then call her partners in practice.  She explained that she realized that coming in to speak to us about her concerns was going to terrify us and that we had already spent 5 days in the NICU and were thinking that things were close to being finalized. She also expressed that she just didn't feel right about not sharing her concerns or all the information with us and couldn't, in good conscience, send us home after only 7 days since she didn't feel we had all the facts.  She had consulted with her partners throughout the day and none felt she was overreacting.

The thing with labs/test results in newborns is they don't definitively answer what is wrong they just show that something is wrong.  The I/T ratio is comparing the immature white blood cells to her total blood cells and the high number is showing that she has some type of infection - but exactly what is unclear.  The original review could pinpoint that she suffers from pneumonia and decided to treat for that.  However, behavioral observations of Claire being crabby and irritable - combined with such extraordinary test results - left Dr. Liu feeling like Claire may have had meningitis.  The problem with such a late review is that no baseline testing could be established to give a for sure answer of what was in Claire's body 5 days previously. 

Oliver and I were left with several options.  One, we could treat Claire for 14-21 days of antibiotics which is the standard course for meningitis, because we don't know what was originally in her labs because, while they were ordered, they weren't ever run.  Two, we could take her home after 7 days, which is the standard course for pneumonia and believe that is all that was ever wrong.  Three, we could consent to have a spinal tap performed and see what her while blood count is after 5 days of antibiotics - knowing that it won't replace not having earlier test results but that it might provide another piece to the puzzle.

Oliver and I sat and listened in shock.  We had been in the NICU for five days and it felt like a bomb was dropping on us.  How could we just now be hearing about meningitis - the only thing we knew about the disease is people die or suffer horrible brain damage - it wasn't very comforting.  We asked if we could have some time to talk and called Oliver's mom - who is a nurse - and asked that she come meet with us and the neonatologist again to hear the same information and listen with a more clinical perspective.

We met up again about an hour later and talked about the risks of a spinal tap, the effects to meningitis, the frustration of things being non-definitive in newborns, and Heidi (Oliver's mom) and Dr. Liu reviewed Claire's chart in more medical detail.  Oliver's mom was also blown away by the band count numbers from early on testing.

The thing about a spinal tap in a newborn is that you can get a clear result looking like there are no white blood cells in the sample which is what you would like to see, you can get a cloudy result showing white blood cells which you don't want to see, or you can get a messy result which means that a vein was struck in the effort to put the needle in and has contaminated the sample leaving you with inconclusive results.  We elected to have the spinal tap performed nad see if we could get more information.

Oliver and his dad anointed and blessed Claire and then I went back to my room and Oliver opted to stay and witness the procedure and be a comfort to her.  He blessed her to be calm and peaceful and for the doctors to be able to get a clean test result and be inspired and guided in her behalf.  He also blessed that she wouldn't feel much pain and not fuss and squirm through the procedure.  I couldn't stand the thought of them holding her in the shape of a "C" with her back exposed and sticking a needle in to draw out vials of fluid.  It took less than 10 minutes and the priesthood power was realized in just that short number of minutes.  Oliver said that other than a cry when they actually put the needle in she was cooperative and didn't fuss or fidget.  Dr. Liu was able to get three clean sample vials of fluid for testing and they appeared clear to the naked eye - just what we wanted.

I returned to the NICU after the procedure to nurse and comfort her and we spent the evening just being with her and holding her and thanking God for all the blessings of the week and His constant attention to our needs and desires.

While the vials appeared clear to the naked eye - meaning no white blood cells present - they still are sent to the lab for testing.  We would have to wait for the definitive results until the following day.  We went to sleep feeling confident and at peace.

How could a baby as beautiful as this, and only 5 days old, have meningitis?  We would know for sure tomorrow.


mj4toty said...

What a rough start! I am so sorry you guys are going through all of this! Reading your posts brought back many memories for me and all I can say is hang in there! I know it is so hard but it's also a time when you can really feel the Lord's love for you and your family. Claire (love the name by the way) is another indomitable spirit. Remember that this is probably harder on you than it is on her. She's fresh from heaven and still full of the strength and knowledge of that heavenly home. During our primary lesson today we were talking about when Jesus came to the Americas and how He blessed the children and angels ministered to them. I know that angels still minister to our children in hard times. Just know that a lot of people, including us, are sending love and prayers your way.

Robyn Gadd said...

Heidi!!!! I can't believe you are going through all this. Baby Claire is beautiful. We'll pray for you and her. Miracles happen! Sounds like you're experiencing some miracles through the trial already. We'll pray for more! Love you and miss you!

Meghann said...

Oh dear, oh dear baby Claire! You are an amazingly strong little fighter to overcome such illness as such a small girl! Keep fighting little lady!

Anonymous said...

Oh Heidi! I am so sorry! I have been thinking about you and remembered the day you said she'd be born and have been checking in for updates/pictures and I was so excited when I saw that you posted something. But this is so not the update I expected. NICU's terrify me. I am sorry you have already spent so much time there. When I say my prayers tonight I will be sure to include your family in them. I hope baby Claire gets to go home soon!! Stay strong and remember that even though she is brand new to this world, she has a purpose and Heavenly Father has BIG plans for her. She must be one strong little spirit if she's already being challenged like this! How lucky you are to be her mom:)