March 29, 2005:  Theresa doesn't seem to be getting worse.  In fact, she seems to be perking up a lot.  She hasn't thrown up today nearly as much as she did yesterday, and is a lot smilier.  Nathaniel is still sniffly, but I think we are doing a good job keeping them apart and really stepping up our sanitation measures (if that is possible) to keep from spreading it to her.

 

We scheduled her fundoplication/g-tube surgery today.  It will take place on April 15, 2005.  She will be in the hospital (Texas Children's) for approximately a week afterwards.  Since it is general anesthesia, they will have to intubate her again, and there is a risk that she won't be extubated immediately, and may have to be weaned from it as she was in the NICU. 

Since she has lived at home, she cannot return to the NICU III for her recovery.  She will either get a room of her own on the floor, or stay in the PICU (pediatric ICU).  We will be staying with her 24 hours a day (one parent is required to stay).  At the same time as her fundo surgery, they will implant her g-tube.  Hopefully, this will take care of the reflux issues, and over time, allow her to lead a more normal life. 

 

Her "leash" (the tubing from the pump to her nose) is only about 6 feet long, so it is difficult to carry her around the house like you would a healthy child.  So, her world is more limited, and when she has a g-tube, I will just have to carry syringes (not the pump) so we can travel around the house easier and she can be taken more places (relatively more, since we are still worried about her catching an illness.)

 

March 30, 2005:  No new health news - I did speak with a friend of a friend, named Susan, who has twin daughters who born very prematurely.  (I believe they are 6 years old now).  Anyway, one of them had a fundoplication and a g-tube, so I asked her questions about it, and she was very upfront and honest about her experiences with feeding and other helpful hints related to the care of a child with special medical needs (especially in dealing with the insurance companies!)  It was very refreshing talking to someone who had "been there, done that."  Between both of her daughters, she has MUCH more experience with all the various procedures that Theresa has had and spent a lot more time in the NICU.  Both of her daughters are doing well now, and that is also very uplifting and gives me hope.  It is so good to have other parents as an additional resource because they can give you advice on the reality of the situation, whereas doctors and nurses are more removed from the day to day care and issues in dealing with them.

 

March 31, 2005:  She had her (belated) 2 month exam today at her local pediatrican's office.  No significant weight gain from Monday (approx 11 lbs still), but we did get a length and head circumference (22 1/2 inches in length and 40 cm head circumference).  So, she is growing well, and on track!

 

She does have an eye infection (she has a clogged tear duct which is now oozing more, and she had an allergic reaction to the first eye medication prescribed), so we are going to try a different one in the form of an eye drop and continue massaging the tear duct regularly.  Nothing major now, but it just looks gross and it looks uncomfortable to have your lashes matted together.

 

I asked about medication to put on her cheeks when we change her tape and duoderm (the dark skin-protector pad underneath it).  Last time we changed it, her cheeks were really chapped and raw and I hated putting more tape on it.  (since they don't receive light or air circulation, the skin starts to break down and bleed).  We had bundled her up and allowed her face to "breathe" for a couple of hours with some cream on it, but it still looked painful.  The doctor recommended using some hydrocortisone cream as well, so we'll try that next time.  I can't wait until this ND tube is out, and she won't have to have any tape on her face anymore!

 

She also received 4 immunizations, and barely even cried when they first when in.  After the shots were over, she fell back asleep before the nurse could even get the band-aids on!

 

ECI (Early Childhood Intervention) came today for her OT evaluation and to set up her schedule.  They gave me a baby gum brush and showed me many massages for her gums, cheeks, and tongue to do with it to keep her interested in sucking and having things in her mouth, as well as strengthening her muscles to suck better when she is finally allowed to do so.  They will come each week to work with her and show us what to do on a daily basis to help her with her neck, legs, and oral/motor skills.

 

We will also be receiving nutritional services from them, and they will come do her eval sometime next week.  Many more people to add to her "team" but anyone who can help her is invited!  Plus, they do everything in our home, which is so wonderful not to have to travel with her and find a sitter for Nathaniel.

 

April 1, 2005:  Theresa was a bit cranky today from the immunizations yesterday.  Once she slept most of the day, she was back to her normal, cheery self in the evening.  Just in time to see Daddy react to Nathaniel and Mommy's April Fool's joke we played on him!