3 Days Old (Last Day in Hospital)

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Dec 192011
 

Original Text of an E-mail from Douglas to Family/Friends

Bringing Alexandria Home

Bringing Alexandria Home

Got home a little later then expected.  Alexandria started an episode shortly before we left.  Afterwards we went through the discharge paperwork and began just chatting with our nurse Lisa.  We talked a bit about her children, one of that was born fairly small like Lisa (but without any additional conditions).   After a while of Kim and I chatting her ear off I asked if we were keeping her from any other patients.  Come to find out Kim and I were the last family on the floor.   They apparently had closed 3 earlier in the day to save costs and had everyone on 2, except us, so she was in no hurry either. 🙂  Lisa told me this was a somewhat new experience for them.  It wasn’t very often that they discharge a child in Alex’s condition to go home.  Most of the time children who have serious conditions either pass away before the parent’s leave, or are discharged into the NICU.  I told her that Alex was good at beating the odds, she’d done so by making it to delivery and by surviving delivery, now by making it home.  She’s an incredible fighter.

They attempted to give us this nice wooden “memento” box, which someone made for people to take things home in who are in our situation.  We explained that I was creating a memento box out of the extra wood that was left over from building Alex’s casket.  We really appreciated the offer, but believe another family would need it more then we would.  She said they were a little small for some of the things they do and wished they were a little bigger.  I told them about my wood shop and offered to make some bigger ones for them if they need them, so when things calm down I’ll do so.

It was much more difficult to leave then I had anticipated.  Before Alex was born I had this strong urge to get her home as quickly as possible, to get her into familiar territory.  The comfort and backup of the hospital was overwhelming though.  Whenever we had questions, there was a button to push and an expert to ask.  The NICU, although we never used it, was literally one door away from our room.  I really really didn’t want to leave.  Earlier in the day I had signed all of the paperwork for hospice.  Although I have grasped what is to come, signing it with ink makes things much more real.

When we got home it was like a weight was lifted though.  It felt so good to be home, to have her home.

Alex had one episode around 9pm, 12:30am, 1:30am, and 3:30am.  She hasn’t had one in 2 hours, and Kim is sleeping soundly on the pullout couch in front of us, so we are sleeping.  🙂  Alex’s episodes last a little longer, but I’ve noticed that she doesn’t get as blue as she did before.  I think she’s breathing very shallow, intermittently, rather then a complete stop as before.  Her heart-rate doesn’t seem to crash as before either.   While talking with hospice they explained that as time goes on her body will compensate for what is happening, that her episodes may dissipate and get better for a while, but then she and social worker said, “but they will return.”    Neurolgical problems with the brain communicating and functioning the rest of the body is one of the main issues with Trisomy 18.

Now the challenge will be to get into a pattern of sleep and support.  We’ll touch base with hospice today, and begin to get the boys familiar with having her home.  Thank you to everyone supporting us.

2 Days Old (Still In Hospital)

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 182011
 

Original Text of an E-mail from Douglas to Family/Friends

Alex had several respiratory/cardiac episodes during the evening, but they began to get farther apart during the later morning hours.  The nursing staff has begun to tell us we need to sleep and that they’ll take her, but we can’t give her up.  Kim was able to get a few hours of sleep Friday night and got 3-4 hours intermittently last night.  I’ve gotten about an hour in the last few days, not really sure what my body is running on at this point.  Alex had an episode that lasted about an hour this afternoon, she didn’t “shock” back quite the way she has been, which scares us a bit.  Our on-call pediatrician was in the room and confirmed that she isn’t in pain, but we’ve ordered some morphine to take home in case she begins to be in pain as time progresses.   She’s been very “normal baby” fussy this afternoon. 🙂

It appears we’re going to get to take her home. 🙂  She’s quiet right now and sleeping, we’re planning on leaving after dinner time.  Early enough to let the boys see her, but late enough that we can get them to bed shortly thereafter.

We’ve asked our pediatrician to prescribe the use of an apnea monitor, which will track when she breaths and her heart rate and alert us to changes.  The current pulsox monitor goes off often and uses “light” to measure levels.  Because of this it can be “wrong” and alert when it shouldn’t (another reason we haven’t slept in days).  The apnea monitor will use sticky sensors that measure her electrical impulses and won’t go off incorrectly (or so they believe).  If it doesn’t work out we can get another pulsox monitor.

Hospice will be here between 3pm and 5pm to finalize the paperwork and go through everything we need prior to leaving.  I was surprised an how much time they wanted to spend, but the nurses said they want to be sure to give enough time to go through everything.  The nursing staff is also going to help us with handprints and other momentos during that time as well.

Thank you so much for your prayers and comments, they have helped us through these difficult days.  We are so thankful we are going to be able to take her home.

 Posted by on December 18, 2011 at 1:30 pm  Tagged with:

1 Day Old (11am)

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Dec 172011
 

Original Text of an E-mail from Douglas to Family/Friends

Very rough night and morning.  Alexandria began to have serious respiratory and cardiac distress starting around 1am, episodes lasting about a 15 minutes.  This happened about every two hours during the night.  She is able to feed via bottle.  We attempted tube feeding last night and that did not go well, it was too stressful for her body to handle and her heart dropped to 40bpm.   Her episodes began to get more frequent, but now are beginning to lengthen out instead of becoming several small episodes.  Her last episode lasted an hour.  We are praying for comfort, she does not seem to be in any pain.  We sing to her.  We read to her.  We constantly tell her how much we love her.

 Posted by on December 17, 2011 at 11:04 am

Alexandria Kimberly Vogt, born 4:26pm Dec 16th, 2011

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 162011
 

Original Text of an E-mail from Douglas to Family/Friends

So Kim tells me about 3:30pm that she’s “feeling pressure.”  I remembered those words from Ethan’s birth last August, which I interpreted to mean things are rolling fast.  I asked her, “Do you feel the urge to push?”  “No, just pressure.”  We wait for the next contraction, sure enough, more pressure.  I called our nurse who came and checked Kim and she was fully dilated… time to start.  I call pastor Rob and he’s on the way.  I call our house to tell Gretta and Harry (Kim’s parents) to get the boys ready, phones busy.  Try again, still busy.  Try her cell phone, no answer.  Try the neighbor’s cell phones, no answer at either of them.  (panic sets in)  I try Gretta’s cell phone one more time and get her, let her know the situation.

While getting things ready Kim tells me she hasn’t felt her (Alexandria) move in a while.  I check and think I feel her move, but am not sure.  I speculated to her that things had become cramped enough that she was comfortable, as if swaddled in a warm blanket.  Kim’s nurse gets everything ready, but tells us that “Whispers” has no one on-call tonight.  (Whispers is the photography place)  She then leaves to try calling them again.  We wait for a while, Kim continues to contract, and we begin to get a little worried.  She’s almost to pushing and there’s no one in the room…  Our nurse returns and lets us know that our doctor is just finishing up a C-section.  (panic sets in)  I’m thinking in the back of my mind, “This baby is not going to wait…”  A few minutes later Pastor arrives, we let him know what’s going on, and he heads to the waiting room.  Just after that our doctor shows up and gets Kim ready for delivery.   By the time her legs were in the stirrups, Alexandria was “right there.”  It only took one push.   The moment her head was out she opened her beautiful blue eyes and looked at me.  She was born at 4:26pm.  She was very still.  They laid her on Kimberly, she moved very slightly.  It did not appear that she was breathing, and the doctor confirmed that she wasn’t when I asked.  She did have a heartbeat though, we could feel it on her.  She seemed so weak, so purple.  I could tell from the looks on the nurses, NICU staff, and others that they did not expect her to live long.  I asked them to go get pastor quickly, and he came into the room.  He asked for a little water and it seemed like an eternity before someone had water in a cup for us.  He baptized her, we prayed, and said the Lord’s Prayer.  Immediately after we were done praying she let out a big cough and began to cry so quietly… but breathe.  It was awesome, just an absolutely awesome experience.  It was as if we were granted a “yes” right then and there.  Our nurse later said, “There isn’t much we can do for her, but obviously prayer works, because I think your pastor prayed her to life.”  She began to move, and take breaths.  Slowly at first, then more regular.  She finally began to get color into her face, her chest, her arms and hands.  We kept her close to Kim and I, and I cleaned her a little.  The NICU staff retreated, saying there wasn’t anything they could do and that she was in the best place she could be, with us.

She weighs 4lbs 12oz and 17 inches long.  It was two hours before we were willing and comfortable enough to let them take her out of our arms to weigh and get her footprints/fingerprints.

Alexandria being weighed

Alexandria being weighed

We finally were able to get a photographer (who was a part of Now I Lay Me Down to Sleep, not Whispers) and the boys here and take pictures with everyone.  We gave her her cross, her baby ring, and all our other gifts.  A few moments ago I fed her for the first time, she was able to eat out of a bottle which is practically unheard of in this situation.  She has begun to have some respiratory distress, but it comes and goes.  We have her hooked up to a pulsoxs machine to see how well her blood oxygenation is coming, which sometimes alarms.  Right now she seems to be doing ok.

We will keep people updated.  Thank you all so much for the thoughts and prayers, to all our doctors and staff, to pastor, our family, and friends.

Alexandria wearing her cross and baby ring

Alexandria wearing her cross and baby ring

 Posted by on December 16, 2011 at 9:45 pm

Update 3pm (In Hospital Before Birth)

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 162011
 

Original Text of an E-mail from Douglas to Family/Friends

Contractions began to get painful, so the epidural is now in.  Kim was a trooper and able to get past her great fear of needles.  Contractions are now approximately 3-4 minutes apart.  Still a ways to go.  She’s resting comfortably and trying to sleep now.  We listened to Alexandria’s heartbeat for a while again.

 Posted by on December 16, 2011 at 3:00 pm

Update 1pm (In Hospital Before Birth)

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 162011
 

Original Text of an E-mail from Douglas to Family/Friends

Progressing.  Just met with a social worker who gave us more insight into some post-birth preparations.  Contractions continue.  Dr. V came in and checked Kim, estimating birth at sometime around dinner-time.  Will keep you all updated.  Thank you for all the notes and prayers.

 Posted by on December 16, 2011 at 12:58 pm

Update 9:40am (In Hospital Before Birth)

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 162011
 
Complication Sign

When a pregnancy has complications the hospital will put a leaf with a teardrop on the door to let people know to read and understand the chart before entering the room.

Original Text of an E-mail from Douglas to Family/Friends

Saw our doctor about an hour ago and she’ll be here around 10 to start pitocin and break Kim’s water.  Last time Kim started pitocin it took about 5-6 hours before delivery, hoping this time goes faster.  Pastor Rob was here and we had a great fellowship with him, Kim and I have been blessed with a wonderful church family that are really helping us through this.  Kim was told she could have a ‘light’ breakfast of toast and chicken broth, which we interpreted to mean French Toast (there is toast in it). 🙂

 Posted by on December 16, 2011 at 9:47 am

Admitted to the Hospital

 Alexandria's Life, Her Birth and Hospital Stay  No Responses »
Dec 152011
 

Kim was admitted this evening.  The room is comfortable and they have let us know that they will not move us until we have to go home, which is good.  The nurse is very understanding.  I will send updates when possible.   These updates may be passed on to friends, family, co-workers, etc.  Thank you again for all your support and prayers.

 Posted by on December 15, 2011 at 9:44 pm