Funeral Arrangements

The hospital provided a nice room for us to have some privacy while we waited for the surgery to be done. Around 11:00 the team came in and the surgeon knelt down to inform me that she did have NEC totalis, which meant her whole intestine had died and she would not recover. There was nothing they could do.
We got to spend almost an hour with her talking to her and holding her. She was sedated to keep her comfortable. Samantha Lily is a very special little girl who will be in our hearts forever.

Samantha Johnson passed away Friday March 12th at 12:07pm. The arrangements are:

- Monday March 15th: Beck Funeral Home, 15709 RR 620 Austin/ Round Rock (512-244-3772). Visitation: 6:00pm – 8:00pm, Liturgy and Rosary 7:00pm.

- Tuesday March 16th: St. Vincent DePaul Catholic Church, 9500 Neenah Avenue, Austin, TX (512-255-1389), 10:00am Funeral Mass.

- Tuesday March 16th: Our Lady of the Rosary Cemetery, Georgetown, TX 3.7 miles East of I35 on Highway 29. Burial immediately following the Funeral Mass.


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Samantha Update 8:56 a.m.

Samantha will be in surgery by 10 a.m.  She is currently septic and they still can't seem to give us a prognosis or diagnosis.  We will update again when we can.

Samantha Update

This morning we got a call about 4 am that Samantha was very sick and being transferred back to St. Davids.  She was perfectly fine at 11 pm and turned around within about 30 minutes.  Her stomach is again distended, she is ashen, and having trouble breathing.  The dr. at St. Davids said he is very concerned she has severe NEK or NAK which is apparently when bowel/intestinal tissue necrotizes.  He said he is VERY concerned and that she is very sick girl.  He said he thinks the surgeons will explore and see that its less severe than her symptoms indicate.  In some severe NEK cases the major intestines necrotize globally all at once.  There would be no recovery from this.  If there is any religious, spiritual, or even superstitious belief you have, please please do it for Samantha.  We will update when we can.  Thank you for all your prayers and support, they has been invaluable.

March 11

Samantha had another episode yesterday and they have cancelled the sleep study to she won't be coming home tomorrow. 3-5 days again.

Still one to go

In case you have been wondering, sorry it took my so long to update but honestly I've been a little heartbroken. My little Sammy did not get to come home Monday as planned. She did not pass the sleep study. It's the same problem she has been having- breathing while she is eating. We are so glad that it is just a developmental problem but it was so hard to leave her there again. I am trying to be realistically optimistic about her coming home Friday. Everyone feels confident she will be ready, but there is always a chance she will need a little more time.
Hannah is still sleeping most of the time. I am sleeping but only for little bits at a time since I need to wake up Hannah to eat at night- so I am a little on the tired side. We have some angels for neighbors who have brought us dinner which was enormously helpful. And I got to take Alexandra to the library for a puppet show today. So all in all things are going well, we are just waiting and hoping that this Friday will be the day.
Thanks again for all your prayers and support.

Almost Complete

We have been so enjoying having our little Hannah home. I'm sure no one is shocked that posts have become even more sporadic. We have been busy with feedings and keeping Alexandra entertained. And of course I am feeling so rested from long uninterrupted nights of sleep. :)
Hannah seems to like home life. She is resting most of the day. Sometimes her eyes will be open for a half an hour or so and we all enjoy seeing the faces she makes. The funny little noises she makes have been likened to a dolphin, a goat, or a raccoon. The are definitely interesting. She almost never cries except for when we have to use the nasal aspirator. She loves to be swaddled. As long as she is tightly swaddled she immediately stops fussing. I guess that makes sense since they would have been 37 weeks on Monday. She had her first well check up last Monday and she was 4 lbs 14 oz. The doctor said she looked great.
Samantha had a problem with her oxygenation on tuesday so we had to restart her 5 day count down to coming home. As of now she is due to come home Monday. I asked the nurse about ten times, and she said that her problem was purely developmental. It's just a preemie thing. As soon as her brain gets used to remembering to breathe even when eating, she will be ready to go home. She said it's like a light switch. So we are hopeful there will not be anymore setbacks and soon our branch of the Johnson clan will be united.
Hopefully next update will say Samantha is home:)

Guess who?