Blog #12: Birth-Day!

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We celebrated Emilia's 3rd birthday last week so I am going to go with the obvious and discuss some reflections on her birth-day.  Here is a picture we took the morning Emilia was born, in fact the picture was taken right before we left for the hospital.  Am loving how nice and swollen I was :)

I do recall after taking this picture thinking to myself that it would capture a "life before" moment, knowing that life would never be the same afterwards.  Now granted it is true every time you go to the hospital to bring another child into this world.  That eerie feeling you have when they let you leave the hospital with this tiny infant.  That first night home from the hospital when you begin to realize that you don't actually know what you are doing :).  But having known for 4 months that Emilia already had a very rare problem with her lungs in utero, there was just something different about this trip to the hospital.

We were scheduled for a repeat c-section.  For the record, I found the scheduled c-section much more awkward than the emergency one.  There is just something so very unnatural about being able to say, "Wow, I will have a new baby in exactly 7 minutes."  Plus it is very unnerving and I always found myself just so anxious for the process to begin so that you would know that all is okay.  That particular sense was really elevated with Emilia.  I really just wanted to know if she was okay.  It was a quick "retrieval" process and although I do recall seeing her face and noticing how small she appeared, the first thing I recall was the doctor saying, "Her head is large, someone should get an x-ray of her head."  Now before you are annoyed with our doctor's blunt commentary, he is a very dear friend and we love him and he would only say such thing because he wanted to make sure Emilia gets the best care.  In spite of her being ever so teeny-tiny (with a large head), she passed the simple tests do they always do and they sent us off to recovery together.

While I was trying to feed her, they kept trying to hook her up to get her oxygen levels, bp, etc.  The oxygen alarm just kept going off, but they kept just saying it wasn't getting a good reading.  We were very uncomfortable because we thought there was at least a decent chance she might have some oxygen problems, but it just kept being dismissed.  After about an hour, a very diligent and considerate nurse came in again and said that she was with us, there might just be something wrong and she put in an order for a doctor to come by.  It took some time..which of course was distressing, and the doctor that came spent about 3 minutes with us and said it can be normal to have some intermittent oxygen levels after a c-section birth (which is true) and we will just have to wait and see.  Wait and see...are these people nuts!  Don't you always wonder how they would feel if someone told them that??  I know they have to say it because I'm sure it does work itself out in most cases...but it sure does feel terrible to hear that phrase, "Wait and see."  On a side note, I later got the bill for this specific doctor visit and I considered writing "wait and see" on it.  PS - Saint Joseph's nurses have truly been our favorites throughout our hospital stays.

After that doctor left, that same diligent nurse said she was as uncomfortable as we were with that approach, especially in light of her size and she said she was going to work some magic to get a lung x-ray.  I don't recall how long it took, but I know that it was the last I saw of her for 24 hours when they took her for the x-ray.  She had a spontaneous pnuemothorax (essentially a collapsed lung) and her and Dave were off to the NICU.  I was stuck in recovery because of the c-section.  My job was apparently to recover and pump to supply the milk.  I'm pretty sure I was out of bed walking around by midnight that day so I could get the go ahead to head up to the NICU in the morning.  Dave was so comforted by the NICU because he just wanted to know that someone was watching her all of the time and that all types of care could be administered very quickly.  They put the first (of many) NG tubes down her nose so they could feed her so that she wouldn't scream and damage her lungs, and they hooked her up to some oxygen.

Some times I hate and some times I love smart phones and the ability to google search from anywhere.  I spent a fair amount of time that first night trying to understand if there was some sort of connection between these two pretty rare lung findings (one in utero and one at birth).  I honestly couldn't find a connection.  It was hard to find anything, including research papers, that mentioned them both...nothing was popping out to explain what was going on.  I really just wanted to understand what we should be looking for next, but google can only be so good at deciphering rare medical conditions on the spot (aka garbage in, garbage out). This is the reason I love teaching hospitals...the next day Dave and I were both able to sit in on the discussion between the lead doctor (for lack of a better term) in the NICU and a group of medical students as they discussed Emilia's case.  The doctor eventually asked the students what I had already been researching, "So do you think there is any connection between the unilateral pleural effusion in utero and spontaneous pnuemothorax at birth?"  A very eager student immediately raised his hand and said he had researched last night and read a tremendous amount about them both and he determined there is no connection.  The doctor said in sort of game show style, "Yoooouuuu'rrrrrreeeee wrong!  I don't care what your medical text books say, there will be a connection between the two." 

How amazing to be present for this conversation.  Hence began our research campaign to find a connection (and my love for mice and their willingness to endure endless tests :).  I was assured there had to be something underlying, and we needed to know what it was because only that could tell us what to expect next!  Emilia spent a few days in the NICU waiting for her lungs to heal and oxygen normalize then it was off to a continued care nursery to monitor how slow she was eating.  At this point they were feeding her the milk I supplied through a bottle and would put whatever she didn't drink through her NG tube.  NICU nurses are beyond experts at getting babies to eat what they need to so she was doing fine there.  It was a little more complicated in the continued care nursery, and although she started eating the volume they wanted her to after a few days, it was way slower than they were comfortable with.  We (being such rookies) insisted we were experts and argued that it had to be hard for her to eat with that damn tube up her nose and down her throat.  We wanted them to remove it so we could see if she would do better without it, but they just weren't comfortable with that.  Fortunately for us, Emilia was on our team.  She yanked it out in the middle of the night and the night nurse just went with it and surprisingly she ate everything they threw at her.  As a side note, when you stay in the hospital after a normal birth and you breast feed...the babies eat very little.  They are so tired.  In fact you leave the hospital thinking that breast feeding a baby is going to be quite easy because it really isn't that often (boy does that change once you are home :).  In this situation, when the hospital controls the health and well-being of your child, they are put on a strict feeding schedule and volume.  Boy was this unnerving, and although hindsight is 20/20 and we would obviously approach this stay differently now, at the time we just did not agree that she needed to be eating the type of numbers they were throwing around.

The next day we fought quite hard with that same "game show" doctor from the NICU to get her released.  At one point he even raised his voice at us and said, "If we don't get this feeding thing right, you will be back here in a month!"  (For those of you that don't know, he was right...we were back in the hospital in a month).  We kept pushing and pushing and finally he submitted.  We ended our time together with asking him, "What do we do now?"  (We were meaning to ask, are there other doctors we should be seeing, what should we be looking for, etc).  He was such a quirky man (don't get me wrong, we loved this about him) and he said, "I don't know.  Take your child home and love her.  She probably has some type of condition.  Maybe she'll need some special education, who knows."  Wowsers was that more information than we wanted...but we appreciated his honest commentary.

Off to home we went...only to discover that it would be nearly 8 months before Emilia would sleep more than 20 minutes consecutively at night.  Oh my gosh, what was going on??!!  I have filled in some of the holes already and I still have some more but I will let you off the hook with this blog.  The last 3 years have been some of the most exhausting and yet most fulfilling of times.  We wouldn't change a thing about her...she is just perfect the way that she is.  And for the record, I don't think she is going to need any special education.  Here is commentary from a discussion we had this weekend (yes, she just turned 3 years old.)

Boys:  "Why do we have to clean our room?" Me: "Because there are people coming over on Sunday for a party to help raise money for the doctors that are trying to help Emilia."  Emilia: "What did you say!?"  Me:  "There are people coming over on Sunday for a party to help raise money for the doctors that are trying to help you."  Emilia:  "I don't want to raise any money for those doctors.  I don't want to help them.  All they want to do is give me shots!"  See what I mean, nothing gets by this girl!