Tuesday, January 26, 2010

Jacob's NICU Follow-Up

While I was in the hospital on bedrest with Jacob, a doctor came into my room and discussed all of the difficulties we would face if he was born that day. He explained in graphic detail all of the disabilities, hurtles and trials Jacob would have to face and overcome in order to survive or have any quality of life. At the time, I was 23 weeks pregnant and the chances of a baby surviving at all or without a physical or mental disability were slim to none. The good news was, that every day I stayed pregnant, the odds of him surviving (and/or avoiding these physical and mental disabilities) increased dramatically. You might be surprised to learn that once I hit 24 weeks every DAY I kept Jacob in my womb meant 3 days less in a Level III NICU. That is huge!

The Neonatologist that came to speak with us was running a study for premature babies born between 24 and 28 weeks. He asked us if Jacob was delivered between 24 and 28 weeks if we would be willing to particpate. You can read about the clinical trial here and for the record, they never put Jacob in harm's way! His health and survival always came first if any part of the study interfered with his ability to be resuscitated at delivery.

After discussing it with Ian, we decided that if I delivered early we did want to be part of the study. The bottom line is that 30 years ago 24 weekers didn't have a fighting chance and because of modern medicine (and the grace of God) children like Jacob DO survive and some (like Jacob) have few, if any, side effects! How amazing that because of past studies, modern technology and new medicines they are able to help babies like Jacob thrive! We decided that whatever the case, we wanted to do our part to help future 24 weekers have higher chances of survival. No parent should ever have to go through what we did with Jacob and if this increases the chance of a 24 weeker's survival then I wanted to help. You can't begin to imagine what it is like to be told that your baby has a 39% chance of living and an 80% chance of him/her having a physical/mental disability. That and the day-to-day drama that comes with not knowing if your baby will still be here in 5 days, 5 hours or even 5 minutes.

As part of the study, Jacob is seen at a "follow-up clinic" at Tufts Medical Center in Boston where he was delivered. They first saw him in January of 2009 when he was 10 months old (6.5 adjusted) and every 6 months thereafter. This past January 19th was the "big" appointment because Jacob is 22 months old (18.5 adjusted) and 18 months is when the child has developed sufficient skills for them to test and determine how he is doing compared to his peers. Most preemies catch up by age 2 and the earliest of preemies (23-28 weekers) usually catch up by the age of 3. We have a long way to go, but this appointment shows us on paper how much progress he has made. The test is not an exact science and if "the toddler" (who shall remain nameless) refuses to cooperate on certain parts of the test it can throw it off. At this appointment, Jacob met with a Neonatologist, a Physical Therapist and a bunch of fellows. They tested him on everything from fine/gross motor skills to language and cognition. This is what they found:

Cognition: 13 months
Fine Motor Skills: 13 months
Gross Motor Skills: 14 months
Receptive Language: 11 months
Expressive Language: 15 months

There were certain tests where he refused to cooperate with the PT, but overall he is where I expected him to be. When people ask where I personally think he is functioning I have been saying 15 months so I was pretty spot on with his skill level. His language has really been lagging behind and I was pretty shocked to see that his expressive language was as high as it is. He only says a handful of words (Mama, Daddy, off, chicken, duck, cat, etc.) and some of his "words" are communication, but not actual words (uh-oh, woof, moo, etc.).

The bottom line is that he is here, he is healthy and he is thriving! I am so happy we decided to join the study and I am hopeful of the results once all is said and done.

Tuesday, January 5, 2010


Happy New Year! First a couple of pictures that we sent out as New Year cards:

As 2009 becomes a fading memory and we turn to the new year ahead, I figured I would blog about my NY's Resolution. I have never made a resolution and prior to this year didn't believe in making one. I feel we should always try to make today better than yesterday and tomorrow better than today. I try my very hardest to make changes daily in places I feel I have been lacking, but spending half the year in a high-risk pregnancy and the other half with two kids 16 months apart (not to mention that the 16 month old requires weekly Early Intervention, bi-weekly PT appointments, quarterly eye appointments in Boston and semi-annual NICU follow-ups in Boston) I have been severely lacking in every department since the early Spring.

When we found out last December that we were expecting....AGAIN, I was prepared for bedrest, weekly monitoring and bi-weekly ultrasounds. I knew bedrest was a possibility and that having to drag Jacob to these appointments by myself every week would be a trial, but I was willing to try at least one more time for a healthy, full-term baby and knew what I was getting into having had a 3.5 month premature micro-preemie the first go around. Needless to say, once I hit 24 weeks, life came to a screeching halt. Everything went on the back burner as I tried my hardest to do everything possible to keep Gracie inside just one more day. This was totally normal considering what I went through my first pregnancy, but the problem is I never found my rhythm again after having her in July.

After a 2008 that was filled with fear, anxiety and desperation, 2009 was a complete 180. There was still some fear and anxiety, but no desperation this time around. Grace was born in July just 4 days shy of full-term which was good enough for me! My baby was healthy, was able to room in with me in the hospital and was discharged to go home the same day I was! All my prayers had been answered. That's also when life got crazy. The first day home alone with both kids was quite an adjustment. I was pumping due to some latching issues, I was juggling the schedule of a 16 month old and a newborn and trying to adjust to the daily grind with Ian back to work. That first Monday alone also happened to be Grace's two week check-up so on top of everything else that I was adjusting to, I was supposed to load both kids in the car and venture out for the first time with TWO kids in tow. To this day, I have only let 3 people in on this secret: My first day out with both kids I managed to lock myself out of my car......with Grace inside......in August. As I shamefully ran back inside yelling at the receptionist to call 911 because I had just locked my 2 week old in the car I thought, "It can't get much worse than this!" Thankfully, I had used my automatic starter to get the car running so the AC was on full blast and Grace was in no harm. Three firefighters, 2 paramedics, a police officer, my Pediatrician's wife and myself watched as Grace peacefully slept through the entire thing. I could only imagine what all the emergency personnel were thinking and my Pediatrician's wife tried to assure me that every Mother does something like this once in her lifetime.....suuuuure. Thanks anyway.

I am happy to report that things only went up from there! After two weeks, we got a rhythm down and life started settling into a routine. Grace started successfully nursing again so I was able to cut pumping out of my life which allowed me to add another 3-4 hours to my day. I learned to change both diapers at once and coerced Grace into following Jacob's nap schedule so I could nap myself when they were both sleeping. Around 10 weeks old, Grace started sleeping through the night which allowed me a full nights rest and energy to get through every day without nodding off around dinner time. The only problem was I started using my free time to check my Facebook page, log on to my "Mom" message boards, surf the internet, watch TV, etc. I did dishes....when the sink was overflowing. I did laundry.... when we ran out of clean clothes. I cleaned my bathrooms.... when we had company coming. I was getting lazy and I would like to say that this was something that began after I had 2 under 2, but it has been getting gradually worse since I quit my job to stay home.

On to the point of my post.....I have decided that I am going to be everything I've always wanted to be in 2010! I will:

  • Strive to be a better mother. I want to get out and do things with the kids. Play at the park, go to story time at the library, go to the beach (in season of course), have playdates, etc. Jacob is a GREAT independent player which is excellent, but quite often I find myself taking advantage of that so I can read or watch Ellen. I could do either of these things while he naps or after he goes to bed. Most days we stay inside and do nothing except, eat, sleep, play, repeat.
  • Strive to be a better wife. With everything else I need to do on a daily basis usually Ian comes last and I want to spend more quality time with him. Even if it just means watching TV with him for a half hour at night or having a glass of wine.
  • Keep up with the housework! I have set a new schedule that will help me do the housework over the course of a week so that it is spread out and not something I have to spend all day doing. For example, on Mondays I do laundry. All my laundry. This includes washing, drying, folding and putting away! On Tuesdays, I vacuum and wash my floors. On Thursday I do my bathrooms and on Friday I do the dusting. Dishes are done daily as well as a general pick-up and so far this is working out nicely!
  • Get healthy! I never take time for myself and my ratio of junk food to healthy food is off the charts. I only gained 14 pounds with Jacob due to his prematurity so that was gone in a matter of minutes. While pumping/breastfeeding I was able to drop an additional 9 pounds below my pre-pregnancy weight. Grace's pregnancy is a different story. I gained 45 pounds and 8 of that was fluid in the last week. I developed some pretty bad eating habits while on the go and back and forth to the hospital to see Jacob and then I was pregnant with Grace. I used my pregnancy as an excuse for eating whatever I wanted. I have now cleaned out my fridge, replaced all my junk food with healthy food ($$$$!) and started preparing meals out for the week instead of winging it at dinner time. I am also excited to try new recipes! According to the scales, I am just about back to my pre-pregnancy weight, but I have some major toning to do which brings me to......
  • E-X-E-R-C-I-S-E! 5 words.....Jillian Michaels 30 Day Shred. I bought it, I have hand weights and I am determined to do this every day for at least a month. Once I whip myself into gear, I plan to hop back on my treadmill as well.
  • Last, but not least and most importantly - Focus on my relationship with God Bottom line...reading the bible daily simply isn't enough. I need to study His word and make sure my life is on the path that it needs to be. I have so much to be thankful for. I have a wonderful husband, two beautiful, HEALTHY babies which is more than I ever thought possible after what we went through with Jacob. I have a place to call home that provides us with shelter and we always have enough to get by which is more than enough. I need to repay Him for everything He does for me with more than 30 minutes a day.
I hope that I can stick with these goals through 2011 and plan to update at random points throughout the year as far as how I am doing. Here's wishing all of you a happy and healthy 2010!
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