March 31, 2009
March 26, 2009
March 18, 2009
March 15, 2009
Milk | diabetes | blood clots | tubes tubes tubes
So, at this point in Katie’s story, she had been on a regular floor for about 1 week. She was starting to open her eyes more, look around a tiny bit and had even taken 15 cc’s of breastmilk from a bottle once.
15 cc’s that took 3 pumping sessions to make! For all those moms who think they have a low supply of milk…try adding copious amounts of stress and then see what happens.
When Katie got sick I had finally just figured out breastfeeding and pumping. THEN it all disappeared! Stress, apparently, kills milk production. So does not sleeping, not eating and generally not taking care of yourself. All of the odds were against me. I was gulping down Ensure shakes to eat fast and getting about 3 hours of sleep as night.
I ended up pumping every day and night for 5 weeks hoping that once Katie was better I could start feeding her again. It wasn’t easy and it wasn’t fun. I would get 5 to 10 cc’s each time. For those who don’t cook…that’s about a teaspoon. YEAH…NOT much!
I would go up to the nurses counter, pick-up a pumping kit and head over to the pumping
room closet for 20 minutes. Then I would collect every little drop in the hospital bottles and give it to the nurse at the desk to store for us. Sometimes we would put it into her feeding tube, but I got discouraged and asked them to save it up until there was enough for a few good bottle feedings. (this was when I still thought she’d hop right back on the bottle once she was better)
Like I mentioned, Katie had taken one very small bottle from a great OT and she was going to try a few times a day to see how Katie would do. The head OT (we’ll call her Attila to make it easier), the one that Kate wouldn’t eat for and the one that we didn’t much like, came in just to tell us that even though she took some milk, it didn’t mean anything. Yeah, thanks lady! She said that we (Chris and I) shouldn’t give her any bottles ourselves, only the OT’s should be feeding her...not even the nurses.
Did I mention just how much I really, REALLY dislike Attila. Just thinking back to this makes me want to march back into the hospital and tell her how discouraging and unhelpful she was in the whole process. I really would do it if I thought she would change anything about her “ways”, but I don’t think she would.
We waited for the OTs to come and sometimes they would and sometimes they wouldn’t. They were pretty busy and it was fairly disorganized. On the second day of this, Chris decided that Katie had been forgotten enough and asked the nurse to hand Katie to him in a chair and I went to pick up a few of my “teeny tiny bottles of milk”. I was a bit nervous because of what Attila had said, but was also frustrated with the lack of diligence. Katie ate 45 cc’s right away...no problem! We were jumping up and down!
We kept feeding her ourselves for a day or two, before Attila reared her face again. I can’t even remember what she said. I completely turned out and then told her that we WOULD continue feeding her EVERY time the OTs didn’t come. And feed we did! Our nurses started to get in on the action and asked if they could feed her during the night when we went to get a few hours of sleep. It was great.
We had one nurse, Wendy, who called herself "the feeding whisperer" who wanted to try. At this point I’m pretty sure they had a bet going to see who could get Katie to eat the most. She got Katie up to 3-4 ounces!! That’s 90 – 120 cc’s!! This was over a couple of weeks and it just got better from there (until reflux kicked in and Katie started HATING her bottles, then went on a COMPLETE bottle strike...but that comes much later in the story).
Katie was to stay in the hospital for another month or so to get her full dose of mega-antibiotics. Even though nothing “grew out” from her last lumbar puncture, the standard course for Meningitis is 4-6 weeks
We managed to get her into a bit of a daily routine. She’d wake up at about 7:00am. We would hold her, rock her and talk to her for hours every day. We had a great group of family and friends who would come daily to take turns spending time with her. She was NEVER alone.
They would take blood from her Broviac line every day and runs labs. This was the line that was surgically placed into her chest. It ran through her skin and into an artery by her heart. YES it was scary. I was paranoid that it would get caught on something and get yanked out. Yikes!
We had a few scares with Diabetes Insipidus. The doctors thought she developed it 3 times, but it worked itself out each time. Apparently when there is damage to the brain it can “forget” how to manage vasopressin.
- Diabetes insipidus is a condition characterized by large amounts of severely diluted urine, with reduction of fluid intake having no effect on the latter. The most common type is central diabetes insipidus, caused by a deficiency of vasopressin, also known as antidiuretic hormone (ADH).
Then, during an ultrasound, they found a blood clot in her jugular vein, care of an old central line in the PICU. This was potentially very dangerous as it could break loose and travel to her brain causing another/more strokes. They had to start giving her 2 injections a day of heparin (a blood thinner). It had to be injected and couldn’t be given via her Broviac. We had to wait for her body to create a “wall” covering the blood clot and then build new collateral veins so that blood would still flow through her jugular...just on a new path.
They watched the clot and measured the amount of heparin (this is the drug that almost killed Denis Quaid's twins a few months ago, in case you haven't watched the news lately)in her bloodstream carefully. We found out that many babies need up to 6 months of injection before it was safe to stop. I was praying that we would not have to give her shots at home.
Katie also still had her feeding tube. Even though she was taking bottles, she wasn’t taking enough to sustain her. So she had an NG tube which went up her nose and down to her stomach. We learned how to set-up the pumps and equipment, run her feds and sterilize it all afterwards.
I never thought I’d be doing this sort of thing for my baby. It was easy to learn but HARD to take emotionally. Tubes, clamps, beeping pumps, injecting air into her little belly every time to check for tube placement...I found it all scary, sad and depressing. And it was another line that could get caught and yanked out. We had to be so careful moving her and holding her with all of the tubes, lines and monitor wires.
Everything went fairly smoothly for about 2 weeks. Katie continued to look around more and more. She started to show her personality, which was SO nice to see. We only had 18 days at home with her before she got sick, so we missed A LOT of bonding time. She began to coo and squeak. We pretty much spent the whole day looking at her and smiling.
AND THEN, just as we were starting to get used to things...
I heard the word discharge. She still had and needed the feeding tube, Broviac and twice daily injections...I started to FREAK OUT! Now I know differently, but back then I had NO IDEA that they sent babies home with tubes up their noses to eat and requiring shots every day.
I just thought we’d stay in the hospital until she didn’t need them anymore. I was blissfully naive back then. :)
Part 8 - Going home with tubes and needles...yup, that’s how it went, coming soon!
SOONER than this one, I promise.
Getting a sponge bath.
A family photo.
Katie cuddling with her Popi. Wow, we look SO tired. Can you SEE me...sorry for the close up!
The coos and squeaks.
A good friend of ours who is now Uncle Omid.
He spent a lot of time with Katie. So cute!
March 14, 2009
March 13, 2009
March 11, 2009
March 9, 2009
- SMA is the leading genetic killer of infants.
- It is a terminal, genetic disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves.
- SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow.
- The mind and spirit are no different from that of a healthy baby, but the body eventually fails.
- Typical babies with SMA Type 1 have a life expectancy of between one and two years and they require around-the-clock medical assistance and monitoring.