February 17, 2008 – The girls improve and the parents worsen

It was a tremendous relief to see Katelynn looking much more comfortable this morning.  Her blood pressure and heart rate have come down signifcantly, and she seems to be getting used to being attached to her scuba gear-like bubble CPAP apparatus.  While I was visiting, I saw much less agitation and the nurse was kind to make adjustments to help Katelynn feel comfortable.  She is no longer taking any Fentanyl, as there are no outward signs that she is experiencing pain.  I was also pleased to see her breast milk feedings have increased to two milliliters per hour as of today.  Katelynn’s belly does seem bloated again, but the day and evening nurses tell us that it remains soft and they are seeing urine and stool in the diapers.  The neonatologist will examine her again to see if there is anything out of the ordinary, but we have seen this with Katelynn sometime last week.

Amidst the extubation and use of the bubble CPAP, it is easy to forget that Katelynn had her ventricular access device (VAD) put into her head only a couple of days ago.  The domed area that sits underneath her scalp on her right side looks like the bumps I used to get when I would hit my unprotected head falling off my bicycle as a child.  I know that Katelynn will continue to grow and the bump will become more subtle over time, but right now, it is a very real reminder that there is a medical necessity to keep the fluid her brain ventricles at a level which will prevent any further damage.  The doctors have tapped into the VAD once each day since it was put in and are taking out between three to four milliliters of fluid to help keep the hydrocephalus in check.  This tap procedure involves using a needle and syringe to pull out the fluid, but I have not witnessed it being performed yet. 

Daria remains as at the calm and collected fighter, unfazed by the irritating bubble CPAP.  She opened her eyes to watch me this morning when I came to visit, and seems to have adjusted to breathing on her own just fine.  The bulky tubing in her nostrils do not appear to aggravate her the way it does with Katelynn, but I am not going to assume that this will not change.  I have seen Daria very upset only a few days ago, and that may come back as quickly as it left.  Nonetheless, our Daria is doing very well, as they have removed the TPN and lipids from her diet.  She is now taking a full feeding of four and a half milliliters of breast milk, fortified with additional calories, every hour.  Her vital signs appear to be decent, but I did see a couple of quick oxygen desaturation episodes this afternoon.

For both of the girls, they will need to show improving signs of respiratory stability and evidence of lung development in their upcoming x-rays before there is a possibility of removing the bubble CPAP system.  When we get to the day where both Katelynn and Daria are off, we may be able to get them into the same bed.  Jenn-Jen and I eagerly look forward to that day, as it seems so cruel the twins had to be so far apart from each other for so long.  It will also help me observe and analyze their features side by side for the first time.  We are convinced the twins are fraternal, as there are subtle differences in their facial and overall appearance.  It will be a very touching moment when we can see them comfortably sleeping next to each other.

While our girls seem to be improving, Jenn-Jen and I, unfortunately, are not.  Jenn-Jen did come down with a mild cold, but the symptoms are very present and enough of a deterrent to keep her away from the NICU.  Even if the hospital did not have a policy against sick allowing sick visitors to enter the NICU, our better sense of judgement would keep us away.  Not just for the sake of our daughters’ health, but we would not be able to forgive ourselves if we ended up getting another baby sick.  I say “we” because I am beginning to wonder if I may have caught the cold myself.  As of this evening, I am beginning to feel the signs of a sore throat coming on, and as a result, decided to forgo my normal evening visit.  To try to keep this at bay, I am taking various supplements such as Zicam and Airborne in the hope that my immune system will be kick-started enough to battle any viral infection that decides to come this way.  Unfortunately, many of these potential remedies are not an option for Jenn-Jen, as she is nursing.  The supplements, in my opinion, probably will not have any effect that will carry over into breast milk, and I am sure the companies that produce the products typically put in the “please consult your doctor” verbiage for liability concerns.  Either way, both of us feel that Jenn-Jen should just play it safe and rest instead.

I took out a large container of  home-made chicken noodle soup we froze last week to let it thaw in the refrigerator and am sure Jenn-Jen and I will finish it off by day’s end tomorrow.  Hot soup just seems to do wonders in making me not feel so sick.  I really hope this is just a warning sign and not a real cold coming on, but I will turn in now to give my body some rest too.  Nine thirty feels so early compared to my average bedtime of one in the morning these past few weeks.  I just hate being away from the girls…

February 16, 2008 – Uncomfortable progress

I suppose it is inevitable, given the amount of stress we have been going through, as well as it being this time of year.  Jenn-Jen woke up feeling she may have a cold, as her nasal passages were giving her problems.  As a precaution, she decided to stay home and not to join me in the morning run to the hospital.  Today’s agenda would be a little different.  I would take Adam to Chinese school, see the girls for a few hours, return to pick up Adam, and spend some overdue father and son quality time.

Adam was thrilled to have me all to himself for the afternoon and I was feeling some reprieve from the guilt of not spending as much time as I would like with my son.  We went out for lunch and I gave him a choice of vaarious afternoon activities.  Adam gave it some thought as he ate and decided that he would like to to take his dad to the zoo.  The time together was priceless, as we enjoying watching the giraffes feed, tigers play and monkeys swing around in careless abandon.

In the evening, I decided to go back to the hospital after Adam went to bed and was very surprised to find both Katelynn and Daria off their ventilators as I entered the NICU.  In the course of the afternoon, it appears that both girls were doing well enough with their ventilator settings to progress to the use of the bubble continuous positive airway pressure (CPAP) system.  The following short video provides a good explanation of the CPAP:  (http://www.youtube.com/watch?v=PW4X-PGA2co).

I had a chance to talk to the on-call neonatologist and he explained that the bubble CPAP  provides better supplemental oxygen delivery as compared to the nasal cannula (http://en.wikipedia.org/wiki/Nasal_cannula)  system.  They do not typically use the CPAP with infant weighing less than 800 grams, and it happens that Katelynn weighed in tonight at 840 grams (1 pound 14 ounces) and Daria at 810 grams (1 pound 12.6 ounces).  Extubation is definitely a step in the right direction in the respiratory development and prognosis of my daughters, but there is a another side of this that troubles me.

When I spent time watching the girls, I noticed Daria was resting quite comfortably and her vital signs were very constant.  Unfortunately, Katelynn appeared agitated and several times she grabbed at the CPAP tubes in such a way that looked like she was attempting to remove it.  Additionally, her heart rate and blood pressure were both higher than what I usually see.  The nurse administered Fentanyl to help Katelynn relax, in case it was more than the discomfort of the bubble CPAP.  We have to remember that her VAD surgery was only yesterday and there may be residual pain.  Still, in the couple hours I spent watching Katelynn tonight, I did not observe her crying much, nor was she grimacing as if she was hurting.

It’s so ironic that I just wrote about the emotional strain Jenn-Jen goes through when she sees either of our girls in pain.  I confess that I was very bothered to see how agitated Katelynn was tonight and I actually had to force myself to leave to calm down.  The frustration for me is realizing there is nothing I can do to remedy the situation.  I certainly do not want to give the nurses the impression that I am second-guessing their assessment, but as a parent, it can become unbearable to feel so helpless and inadequate.  I really believe that my heart-to-heart conversation with Jenn-Jen last night has made me much more aware of my daughters’ pain and discomfort, and tonight I am feeling tortured and tormented.  It has been a while since I have felt this way, but I found myself in tears driving home from the hospital tonight.  My glimmer of hope is knowing that the bubble CPAP may not stay on Katelynn very long, as she did very well on the nasal cannula system before her recent surgery and shows strong respiratory signs.

Nonetheless, I ask for your prayers to have emotional peace over Katelynn’s apparent discomfort and also for our entire family to be completely healthy soon.  Being sick keeps us away from the hospital, and I just do not want to be forced to spend time away wondering if my daughters are going through pain.  I know I should get to bed soon, as rest is one of the best forms of prevention.  Of course, this is easier said than done, especially with a night like tonight.