Archive for the 'Medical' Category



16
Nov
12

2nd World Prematurity Day, November 17, 2012

Prematurity, talk about it. Be aware. Let’s stop the #1 cause of infant mortality in the world.

Drake is very, very healthy for a 2lb-er, 30 weeker and we are still working through effects of prematurity for him. I have still needed to change my career so I can care for him in the way he needs. In addition, he’s being treated for a birth defect and had surgery at less than a year old.

I want to use our experiences as a family to make a difference.

 

NICU journey in PICS

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16
Nov
12

Assessment Update

Drake had a pretty good assessment. The team consisted of a physical therapist (his one from the NICU, I was GLAD to see her), audiologist, speech therapist, occupational therapist and neonatologist. All of his tests were testing him at his adjusted age of 6 months, 2 weeks not his actual age of 8 months, 3 weeks.

His daddy and I were a bit shocked when they asked us to participate in a research study following neonates born at less than 33 weeks gestation who were on extended ventilation. We don’t think of it that way as he was only intubated for about 6 hours, but apparently all the time on CPAP and nasal cannula counts toward that as well.

He was a bit too young for the hearing test to be conclusive so the audiologist will retest him in 6 months. He did ok with parts, hated their high chair, and didn’t want to have anything to do with one part of it. Stubborn little dude!

He excelled at fine motor skills like picking up cheerios with both hands and grabbing some blocks and other objects. The occupational therapist had a good time wrestling the cheerios away from him. They rated him at 7-8 months his actual age.

His speech/communication they rated at 5 months. He wasn’t feeling particularly outgoing as it was his nap and eating time, so I think this will be better the next time. He is very animated and knows how to get his point across, but there is a specific progression to the babble that they want to see. So that was his one weak point.

His gross motor skills they rated at 5 months. Mainly due to the weakness I was most concerned about, his truncal tone (core/abdomen). He sits ok with support, but with all his rolling and attempting to crawl I was really concerned with his slumping and lack of interest in trying to sit on his own. So this diagnosis is truncal low tone which she said was typical in preemies born at that low of birth weight and gestation and gave us some exercise to work on with him.

For now they want to see him again in 6 months, and we will also be getting a detailed report along with his pediatrician.

We also got to drop off a thank you card to the NICU staff, something that was good for mommy’s heart. ­čÖé

12
Nov
12

Developmental Assessment

I’m a weird mixture of scared and excited about this appointment. I’m definitely not an expert on infant/early childhood development as my education and work experience tends more toward the financial world. I can see where Drake is and what I think needs improvement.

His pediatrician believes him to be making good progress as of his 6 month wellness checkup. That is good progress for a 6 month old who is really barely 4 months old. He’s still got a tendency to be a picky eater, and some family members are trying to make me force him to sit up on his own (like I have control over that). I’m very careful not to use “Dr. Google” or make comparisons to a friend’s baby who was born 3 days after what should have been our due date.

Just like the NICU, this is unexplored ground for us. I’m so thankful my husband was able to take a half day on Thursday to go with us. He may think of things that I would miss.

So at 8 months, 3 weeks/6 months 2 weeks adjusted, he is

1. sitting with support

2. grasping object and stuffing them in his mouth

3. stealing his feeding spoon

4. eating 4-6 tbsp of pureed food/28 to 30 oz of 24 cal formula

5. getting up on his hands and knees and rocking but not crawling

6. laying on his belly and kicking and swirling arms like he’s swimming

7. on the growth charts for height, weight and head circumferance (1% baby yeah!)

8. wobbly standing if I set him on his feet

I think he may need help with:

1. a week core? the not sitting thing does bother me with the amount of tummy times he gets

2. talking/communicating – he’s good with various cries and has some babble, but he’s not exactly following the ga ga, baba, mama, dadada thing to me

3. his leg muscles especially calves are pretty underdeveloped looking after the clubfoot casting and treatment

 

I think he is an amazing miracle. I want to make sure he gets help if he needs it.

Remember World Prematurity Day, November 17th!!! All babies deserve a healthy start!

30
Aug
12

Happy Labor Day

Happy upcoming holiday weekend! September 1st is an important anniversary for me. It marks one year ago that I found out I was pregnant for the first time. We had been trying for about 6 years and had really given up hope that we would get pregnant naturally. I was about a month from 34 years old, and we had just celebrated our 12th wedding anniversary.

I took a test the night of September 1st that had been sitting in my bathroom cabinet waiting for a missed period for about two years. I had been tired with a sore nipples and just kind of off for a couple of weeks. I really wasn’t tracking my period because it seemed to come and go based on my stress level and everything was always negative. My husband suggested I take the test. So I did even though I didn’t really expect anything to come of it. Imagine my surprise when the positive sign showed up. The line seemed a bit feint to me, so I insisted we go to the drug store for a “fresh” test.

Two fresh tests, with 3 more to follow in the next couple days just to make “sure,” we looked at each other shell shocked and then excited. We’re pregnant! We didn’t wait the 12 weeks. We called our parents right away. It was all just too exciting and surreal to keep to ourselves. I’ve never been happier.

The day I got those first positive tests ranks as my happiest day ever. Yes, NICU grad day is up there, too. But this was before my spotting episodes began. Before scares about low progesterone levels, high blood pressure or gestational diabetes. Before those unbearable seconds waiting for a doppler to locate a heartbeat. This was an unshadowed day full of possibilities, wonder and thankfulness for our blessings.

I thank God for that day. It is one I can look back on and enjoy with no PTSD or medical scares to mar it.

On a Drake medical note, his mouth cyst was diagnosed yesterday as a hemanginoma. His ENT wants to take the mostly wait & see approach, but is going to inject a steroid to inhibit further growth when we have his hernia repaired this fall. I’m thankful his doctors can combine the procedures so we only have to do anesthesia once.

 

22
Aug
12

Six Month Checkup

13lbs 4oz (1%)

25 inches tall (8%)

Head circumference 16 inches (1%)

All of Drake’s measurements are on the growth chart for his age! Huzzah baby Drake! Pediatrician says it is awesome that he has gotten on it so soon, and that he continues to follow his own personal growth curve.

He is grasping, putting things in his mouth, rolling over back to front and front to back and doing “mini push ups” on his own when on his belly. Sits well with support. Pediatrician was happy with his motor skills and development which leaves me hopeful for the early intervention assessment coming up at Good Sam in November.

We have an referral to get his mouth cyst looked at with the Children’s Hospital group. The hernia repair surgery should be scheduled soon, as he’s reached the age the surgeon was hoping for with no further issues. ┬áHis mystery rash is probably the leftover of whatever caused his pinkeye and is a good sign especially since it wasn’t accompanied by fever.

His doctor thinks this is going to be a bad, bad cold/flu season though so there will be lots of rules to follow. Whatever we have to do to keep the little dude’s lungs developing well and healthily is what is going to happen.

The basics: if you or anyone in your household has been sick/has the sniffles please let us know and stay away, lots of handwashing and sanitizer will be required, any adult caring for Drake needs to get this season’s flu shot and a whooping cough booster. We won’t be taking him to church, the store, restaurants, or any large gathering of people (including large family events) where we can’t control exposure. I know everyone wants to cuddle and hold him, but I will be keeping who’s allowed to do this to a minimum as well. There will be plenty of hugs and cuddles saved up for April.

Please respect our rules. They are for our son’s well being, and they are hard on us, too. I don’t think anyone wants to see Drake go back to the hospital for something totally prevantable with precautions.

In the spring, we’ll celebrate making it to the healthy finish line with Drake’s baptism. ­čÖé

We really, really thank everyone for their love and support. It’s hard to believe 6 months have already passed.

Love and Blessings

18
Aug
12

RSV Protection

My son is a 30 weeker born in February. He spent about 4 hours intubated, 3 days on CPAP, and 2 weeks on nasal cannula. We received one Synagis shot when it was time to come home in late March.  His pediatrician helped us file an appeal to try to get him an April and May shot because our area had a late season. We were denied again anyway, so we stayed on lockdown until mid-June.

How to handle the upcoming cold and flu season has been on my mind a lot lately. I’ve been reading stories of other preemie families around the same birth age as my son. I want to have all my questions ready to ask at his 6 month wellness visit this week.

I think I have our plan mapped out. I know my husband will support me. I’m working on a letter for family and friends because I know there will be some resistance there. In the end, I will do what I feel is best for my son. I feel like this fall is especially important because he will be having surgery requiring anesthesia in November.

http://www.absolutetotalcare.com/files/2011/12/Synagis-2011-2012-Authorization-Guidelines_2011-07-28.pdf

Drake just barely misses the cutoff for round 2.

Good luck to all preemie families trying to keep their babies safe from this disease!

 

 

 

 

 

26
Jul
12

Life is PRECIOUS

Sometimes you can’t win the battle, but other times miracles occur. I read a story today about 4th smallest baby to survive finally going home from the NICU. The story didn’t make me wonder whether her family had insurance, money, or the ability to pay for their special needs child.

No one ASKS for a preterm baby. No one PRAYS for a special needs child. Sometimes God gifts you with a miracle, and you as a parent, have to rise to the occasion.

Stories like this are what horrify me about the insurance and healthcare debates. Have people in the US really become this vindictive, cynical, faithless, and spiritless? It’s scary. Who on earth posts a comment that a child is not worth saving. I’d like to believe none of these people were parents, but unfortunately I’ve seen too much of the world to believe that.

I’m really just in shock. I’m sure some of it is postpartum issues I’m dealing with, but I am really and truly upset over this.

Here is the link to the story:

http://abcnews.go.com/Health/worlds-smallest-surviving-babies-home/story?id=16714169

I hope I don’t get backlash from posting on my facebook about it, but I figure anyone upset with me for my opinion can just go away. I don’t need negative, cynical, mean people in my life. Especially not as I navigate the dark waters of life after the NICU, clubfoot treatment, and prematurity.

Now I am not judging parents for making quality of life decisions for their child. ┬áSometimes there is a point of no return and I am so thankful to not have been faced with that decision. However, society has no right to dictate who will and won’t be saved. If we take that out of the hands of medical professionals, I fear for us all.




Drake’s 3rd Birthday

February 20th, 2015

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