Archive for the 'High Risk' Category

25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

07
Jun
13

One Step At A Time

Never again will I post BEFORE we go to an assessment or appointment.

So we have the good and the not so good.

1. Low muscle tone and hyper flexible joints are holding back his gross motor skills like walking. The team also thinks its causing pain/discomfort when sitting still, so it’s why he has trouble focusing on things like eating.

Suggested: Get enrolled in Early Intervention and if he’s not walking solo in 3 months (18 actual/16 adj) we need to consider AFO options after a consult with PT.

2. His verbal skills are awesome. 11 words and going.

3. His weight/height are on his personal curve and increasing at a rate that pleased the neonatologist.

4. They want him in the follow up clinic program until at least 2 actual. Next appointment in 6 months.

5. We toured his future preschool today. He has to be off the bottle completely and walking independently for the half time 18-24 mo class. The will give him his extra calorie formula in a cup as needed and have cared for preemies previously. Plus, Asst. Director is a family friend.

So now to set up the EI evaluation, and hope.

06
Jun
13

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 

27
Apr
13

March for Babies

Tomorrow we walk. Maybe in the rain, maybe in the sun.

Jodi of Peek-a-Boo ICU says it best, I think, “We fight because babies shouldn’t have to.”

Team Drake-growing baby dragons is going to walk for

Our amazing former 30 weeker, Drake.

For Margaret Elmer, an angel too soon.

For Jaron, born at 32 weeks and Mallory and Annabel born at 33 weeks.

For Baby Branch, born at 29 weeks far from home.

For all our Nicu friends in DAND.

For all congenital birth defect warriors, fighting to get their hearts, feet, or other challenges conquered.

For the preemies and NICU families we know only through their stories Owen, Jack, JP and others.

This walk’s for you!

Much love,
Team Drake

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18
Feb
13

A New Preemie Family

As I gave advice to my friend on her brother and his wife’s needs over the phone Sunday afternoon, I was taken back to that place where nothing from anyone was a comfort or help.

The scariest moment. When 10 people rushed into a triage room with me, and looked at some monitors and made me get in a fetal position on my left side  and put an oxygen mask on me. Hands down the worst moment of my life. I had just arrived by ambulance 20 minutes prior from our neighborhood hospital that only has a Level II NICU. My husband hadn’t yet been allowed to join me. When I think about that moment one year later, I still get nauseous.

The new preemie mama and daddy that were made today had twin girls at 33+6. The first baby came naturally, but an emergency c-section was needed for the second. Please keep this new NICU family in your prayers. I hope their little ladies are feeder/growers and home soon! And all my best to the mama as she heals.

Ironically, this friend and her husband were our support the night I was admitted. They came to the hospital to support my husband through a night where the slightest movement from me would make baby’s heartbeat coming through the monitor fade away. They are wonderful, beautiful people and I am so sorry prematurity has touched their family almost 1 year to the day after they stayed up all night with us.

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

07
Nov
12

Prematurity Awareness

First, Drake’s surgery went very well. He had no indications of respiratory distress and is recovering well after 1 week. He did seem to lose some weight as it was hard to ramp his feeds back up. He had some mouth swelling due to the hemangioma injection and sounded hoarse from the intubation.

November is prematurity awareness month, culminating in World Prematurity Day on November 17th. I encouage everyone to take this month and learn more about the impact premature birth has on our country and the world.

In the US alone, 1 in 8 babies are born prematurely each year. That’s over half a million preterm infants. The effects of preterm birth are wide ranging from being the leading cause of infant death to developmental issues that continue throughout life.

How can we help reduce the number of babies BORN TOO SOON?

Take the time to review information at the March of Dimes and their research into prematurity and birth defects.

Here are some great resources and preemie parents’ blogs.

March of Dimes – supports research, parent information while a child is in NICU

Kentucky Special Born Too Soon Report – Kentucky has one of the highest rates  of prematurity in the US. I am fortunate enough to live in the Cincinnati metro area with amazing resources like Cincinnati Children’s and Good Samaritan Hospital, but many areas of our state are rural.  Let’s work on 39 weeks Kentucky!

Life with Jack – the journey of a 23 week miracle micropreemie and his family

Ain’t No Roller Coaster – the journey of Owen, a 24 week miracle micropreemie and his family

Hand to Hold – A preemie parent support resource

Life After NICU – A preemie parent support resource

Sincerely,

A Proud Preemie Parent

13
Sep
12

Surgery Dates and Anniversaries

Yay. Yay. Yay. We finally have our date for Drake’s inguinal hernia repair. By the time we have it done in October, it’ll have been almost 5 months from the time I noticed it and took him to see his pediatrician in a panic. I’m so, so glad that his ENT was able to coordinate with the surgeon and will be able to do his mouth injection without an extra bout with general anesthesia. Please God, just keep that little bit of intestine from kinking up for a few more weeks!

On September 7, 2011, I saw my baby’s heartbeat for the first time. I cried. It was at the end of 32 of the scariest hours of my life up to that point. On September 6th, I started having some heavy pink and brown spotting. After a sleepless night, I called my Gynecologist/OB’s office. My first appointment wasn’t scheduled to happen until the 15th.  The nurse instructed me to head straight to the hospital and have blood drawn.

I got a call about 230pm that my hcg levels definitely showed I was pregnant, but they were concerned about my progesterone level. It was a 9.7 which is on the very low end of normal. They set up an ultrasound for 30 minutes, and I left home to go pick up my husband from work along the way.

We only had to sit in the waiting room for about 10 minutes, and I remember feeling like I was going to throw up the ENTIRE time. Not due to morning sickness either. I only had 1 or 2 incidences of throwing up usually I only had mild nausea.

148 bpm and two pictures of a little bean. I was discovered to be 6 weeks, 5 days along. Estimated due date of 4/27/12.

Ironically, his heartbeat was 148 at the final ultrasound of my pregnancy, too. Taken on February 9, 2012. Eleven days before his birth.

The spotting lasted for 5 weeks. Almost until I was out of that scary first trimester. A friend tried to convince me to push for progesterone supplements when I talked to her about things. She’d had her own pregnancy scares, woes, and triumphs. Of course, the doctor’s office turned me down since it was my first pregnancy on record.

I didn’t push.

Sometimes I wonder what if I had.

 

 

 

 

 

 

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.

 

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.  Sometimes 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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