Returning To Work After Having a Preemie

Back in mid November Stephanie (23wktwinsmommy) wrote to me with a possible topic for the blog. The topic is one that many parents of preemies can relate to in their own lives. My comments will be at the conclusion.

Stephanie (23wktwinsmommy) writes:

"Edwin and Serena received home care nursing in our home because they needed oxygen....24/7 at first, and gradually have managed sleeping without it two years later. Nursing allowed me to work, which is how we have health insurance and money to pay our bills.

But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.

1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need prednisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to over stuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?

I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.

We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.

So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.

What are these parents suppose to do?

As for me...it makes sense to not get married, quit my job, get free health care and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)"

At the beginning of December Serena was hospitalized for an upper respiratory infection (Stephanie, please correct me if I am wrong). After she was released Stephanie sent me the following update.

"The only *good* thing that came with Serena's illness and hospitalization is it fell in the same month we are getting reviewed by the case manager regarding our nursing hours. We went from having her only on a multi vitamin and off O2 completely, to being in the PICU for a week, on neb treatments every 4 hours, to 2 puffs BID of Flovent, to an oral steroid for the next 2 weeks.

This will certainly allow us to keep nursing, but at what cost?

It goes to show that my kids, and many other extremely premature TODDLERS are not equipped to go to daycare, and around other sick kids. A runny nose for a healthy kid is respiratory distress for ours.

People talk about hiring a nanny. This may be an option for some, but the idea of paying a lot for a nanny so I can work 30 hours a week, doesn't make much sense. I think I'd rather stay home and collect SSI.

I hope half day special ed preschool goes ok in September! Maybe their lungs will be healthier by then!"

I was working full time when I became pregnant with Paige in a career that required school and licensing. When my water broke (at 23.0) weeks I still thought that I would be returning to work. Paige was born at 25.5 weeks and during the time she was in the NICU hubby and I started wondering how it was going to be possible to return to work.

After she came home (we did not have nursing care) it was clear that I was going to be a stay at home mom, indefinitely. Early intervention was in our home 4 days a week. For the first 2 years of her life we never went more than a week (give or take a few days) without a doctors appointment. We knew that daycare was out of the question because of her fragile health.

Financially we drowned. The NICU bills, doc bills (copays and meds that weren't covered) and our private insurance (over $1,000 per month) cost more than hubby made. We now had only one car (I had a company car that I had to give up since I was not returning to work) and relied on family members to take us to doc visits. We did not qualify for SSI any longer either. We ended up filing bancruptcy.

I think that the issues that Stephanie raises are not uncommon to preemie parents. I am interested in hearing what others have done.

If you have been successful in returning to work, what type of child care do you use?

If you haven't been able to return to work, how do you make ends meet?

Long Over Due Update

To bring everyone up to date...

For quite a while now Paige has been having questionable episodes that left us wondering if her seizures were back.

She was first diagnosed with epilepsy 2 weeks before her 4th birthday, following a seizure on a swing at the playground. An EEG showed continuous spikes and she was put on medicine. Her meds were changed a few times and she ended up on Depakote by age 4 1/2. Each subsequent EEG showed continuous spikes and her meds were adjusted. By the time she was 5 1/2 she was on a toxic dose, which was evident by her blood test results. We had changed neuro's a few times and finally ended up with one who explained that due to her prematurity, her EEG's may always be abnormal. The new neuro weened her from her meds since we weren't seeing any seizures.

Right after she turned 6 we moved to a new state. Her new neuro completely agreed with her previous one and Paige remained med free, despite each and every EEG being abnormal (continous spikes).

Due to the recent questionable episodes we headed back for an EEG 2 weeks ago. Last night I received a message from her neuro that her EEG was normal.

Was I jumping for joy? Nope. An EEG is a snapshot in time. A clean EEG does not mean that she is seizure free. What was also bothering me was that I was present for the EEG and witnessed the spikes myself. I also wondered how we could go from having abnormal results on EVERY EEG to all of a sudden having a clean one.

Today we met with the PA at the neuro's office. She also shared my reservation about the clean EEG. She did say that some kids "grow out" of their brain abnormalities around Pagie's age but was quick to say that she is also concerned with the recent episodes. She ordered a 24 hour video EEG, which Paige will have (in hospital) some time at the end of January.

I want to thank everyone for their well wishes, both in the comments and by personal email. The kind words mean so much to us.

As for the other reason why I haven't been posting to my blog as often... A few months ago I started feeling sick. Recognizing that I had gestational diabetes with my 2nd pregnancy, I pulled out my meter and started checking my blood sugar levels. It became pretty clear why I was feeling ill. Most all of my 2 hour blood sugars were over 250 (with a few at 300)! (should be below 120).

I headed off to our GP who was not worried at all. My A1c levels were somewhat within normal range which left him thinking that I may simply have an infection somewhere. After having an allergic reaction to the first antibiotic (sulfur drug) I completed a course with a new one. My blood sugar levels were still high, despite me changing my diet to include ONLY salad and croutons (no dressing) for all 3 meals a day. I had lost 5 pounds in only 2 weeks. The doctor was still not worried and sent me on my way.

Over the next few weeks I did nothing but sleep and eat salad, now without croutons. I could not introduce any carbs whatsoever. I was able to get my blood sugar levels close to normal but my morning sugar levels were never below 180. I had been feeling so sick for so long and now I was only eating salad and my weight was dropping. Granted, I needed to loose weight but it was coming off too fast. I decided to go to an endocrinologist. As he scrolled through my meter he became equally as concerned as I had been and prescribed medicine.

I'm finally starting to feel better but I still can't have many carbs without my sugar levels flying over 200. Due to the extreme fatigue, blogging became the one thing I had to let go for awhile.

I'm back now and have lots to say. Thanks for sticking around and I hope you all come back for the upcoming topics.

Have a safe New Year's Eve everyone!

I'll be back soon

Yes, I'm still here.

I'll be back soon with a new post and an update. Thanks to all who have emailed me with words of encouragement about the possible return of Paige's seizures.

U.S. Gets Low Marks For Rise In Premature Birth Rate

Recently an article appeared in the LA Times titled "U.S. Gets Low Marks For Rise in Premature Birth Rate".

One aspect I found interesting was that the blame game has shifted a bit. The March of Dimes is notorious for ads depicting the cause of prematurity to be maternal smoking, drugs and lack of prenatal care. In this article, however, the finger is being pointed in other directions. Maternal age, rise in c-sections, in vitro, A.R.T (assisted reproductive technology) are all mentioned.

Dr. Alan Fleischman, medical director for the March of Dimes, comments,

"There's been a change in the way we practice obstetrics," Fleischman says.

That change, ironically, is partly due to lifesaving technologies developed to save preterm infants, Fleischman says. These have made many obstetricians feel that they've succeeded if a woman doesn't deliver before 34 weeks and that babies are more or less out of the woods by that point in the pregnancy.

This belief has lowered doctors' trigger points for performing an elective induction and cesarean delivery before a fetus has reached full term. If a pregnant woman is experiencing minor difficulties (or sometimes if she is simply feeling uncomfortable), some doctors will deliver the baby prematurely thinking that it is better for the baby to be in the neonatal intensive care unit than the womb.

"The problem is, they haven't taken into account that even late-preterm infants often have bad outcomes," Fleischman says. These babies suffer some of the same immediate problems that more premature infants experience, and often struggle with subtle developmental problems later.

"Getting to term should be the goal," he adds. "We don't want to stop one medically needed early delivery. But many elective inductions and cesarean sections would benefit from more careful consideration."

Engage With Grace

This past week I was contacted by Paul Levy (who blogs at Running A Hospital) asking if I would participate in a project called "Engage With Grace". I gladly accepted. I've had personal experience with watching a loved one die the way they chose and unfortunately I've also had experience watching a loved one die without their wishes being heard. "Engage With Grace" will help facilitate an important discussion that everyone should have with their loved ones. If anyone would like to add this post to their blog (should be left up starting today and ending Monday) please email me and I will send you the code.

Stacy

******

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

10 Years Old!

I had been working on a blog post for over a month now, spending most of my writing time staring at the screen and crying then deleting anything that I was actually able to type.

I still can't figure out why this birthday is hitting me so hard. It has taken me by surprise.

On Paige's first birthday I was an emotional wreck. I was fine through all of the planning. I was fine that morning while I was setting up the large room we had rented that would be holding the 56 attending guests. I was fine during the time we greeted each and every person who came to celebrate Paige's first year of life. Then, stupidly, I decided to give a speech. (people who know me well can attest to the fact that public speaking is not difficult for me). Even as I write this today, I begin to cry when I think back to that day. I opened my mouth, prepared to thank everyone for their emotional support, when out of my mouth came this squeaky voice. Then the tears started. Really started. It wasn't a pretty cry. It really wasn't a pretty cry. All of the hell we had been through was hitting me. It picked that time to attack me and I couldn't function. I turned to my husband (anyone who knows him very well can attest to the fact that he HATES public speaking) for help. He stared back at me with this look of "what the heck happened to my wife?" and did not say a word. Looking at him made me cry harder. We had been through so much in one year and here we were, still together, holding our beautiful child. I managed to squeak out some lame, very short, speech and then ducked out of the room to cry. It was an ugly cry. Primal tears. Anger. Fear. Joy. It was all there. It was painful. Still is. I had never allowed myself to cry much before that moment. There I was, outside of a room filled with 56 people, in the midst of an ugly cry that I couldn't stop.

Each year Paige's birthdays were emotionally easier for all of us. Each year the NICU experience consumed less of my thoughts on her special day and ended up as only a late night mini conversation with hubby. I am so thankful that the NICU memories can take a backseat now.

Back on that day of her first birthday, I never could have imagined a birthday without the main focus being the pain of the NICU time.

As Paige's birthday approached this year I was taken aback by the flood of emotions. It had been easier each year. Why was I going backwards now? I am still not sure why but it has upset me because I couldn't even get a blog post written. Geesh! I'm never at a loss for words. lol

Then along came an email from Chris. Oh Chris, you have no idea how much your words helped me (thank you! thank you! thank you!). You are right, "we have come a loooooooooong way baby!"

Paige is doing wonderful. Homeschooling was the right choice. She has gained about 6 pounds and looks healthy. Her meds are working and her skin is healing. She is an avid store rock wall climber and would do it every day if she could. She is surrounded by family (who moved here to be near her) who loves her very much. She has a strong spirit-one that drives her to many new areas. She is in tune to her surroundings and the people she encounters. She feels strongly about many issues that, once given the opportunity, will talk your ear off about. She is a beautiful person. We are all so lucky to have her in our life.

Double didgits! 10 years old!! Woo Hoo!!

We decided to take a family birthday vacation to a large indoor waterpark. We all had lots of fun. On her birthday we had a party with her local grandparents. I caught myself staring at her, in awe of her. She really has come a long way. I know the future does not guarantee that her path will always be this good. But, for now, we are enjoying these good days.

My dearest Paige... Happy Birthday!!!










(Correction... Hubby just read my blog post and has a bit of a different memory from Paige's 1st birthday. First he wasn't happy that I said that he hates public speaking. Correction... he only is comfortable speaking in public if he has written the speech ahead of time. 2nd correction... Hubby is sure he did say something when I was at a loss for words. Jokingly he told me that he said something about the blubbering person next to him but all joking aside, he is sure he said something. lol Gotta love hubby's memory!)

Please Help Ashton - Video is at the conclusion of the post

Ashton is a 3 year old former 24 week preemie who is having episodes like the one captured in the video. Shannon (mom) has asked if I could post the video in hopes that someone may have an idea as to what these episodes could be.

I know some of you have seen this video when I sent it out last year, asking for your help. Unfortunately he is still having the spells, despite a lengthy stay in the hospital to get to the bottom of them.

Here is info about Ashton from December of 2007...

MRI in May 2007 that shows mild PVL.
Ph probe yesterday....not sure what yet. Had one about 9months ago
that showed reflux. duh
EEG (2 times) - they were abnormal but no seizure activity
*they are saying seizures (some of them) from me describing the
spells. However all docs that have seen Ashton have a spell have said
no it isn't a seizure. (he did them in ICU in Feb06)
Echo 8 weeks ago was fine. They discharged him. I have however heard
that echos do not show every heart problem there could be.
Last lung xray showed thickening of bronchial walls.

Born june 10-05 at 24 weeks 1.9lbs.
G tube placed Oct05
Spells started Nov05
Dec05 discontinued domperidone due to severe EP effects.
Jan06 home from NICU
4 days later back in b/c had 7 spells at home
Ended up in ICU on vent. Spells continued on vent.
Sats go to 20s, 30s and heart rate drops.
GJ tube placed and spells went away until he had two in July06(same
day), April07, June07 and then Nov07

Here is the most recent info provided by Shannon (sent to me on Oct. 20, 2008):

Okay long story short, we know that they are not seizures. He has had four eegs all with no seizure activity. He has had full cardiac workups showing nothing there at all either. I do have to say though that I have had two surgeons that have worked on him come out and say that he is shunting. No holes are seen/found.

If on a monitor while this is happening his oxygen sats will read anywhere from 20-40. His heart rate does not change MOST times.

His recent stay in ICU on a vent he had 11 of these episodes while sedated. When they try to bag him they either can't or it is VERY hard to. The doctor at this stay automatically thought of pulmonary hypertension. Echo was fine.

He has had a CT of his lungs that show not much more than BPD and blocked areas most likely from micro aspirations.

We thought they may be related to reflux however the ph probe and oxygen study showed no correlation between reflux and desats.

He frequently as well as desats to 60s, 70s and 80s. Not nearly as scary as the one shown.

This spell on video, just before it he was about to take a poop. Which made me think cardiac as well. However I have seen these spells happen out of nowhere with no warning.

Sleep study showed sleep apnea. Obstrutive, hypopneas and central. CO2 levels are higher than normal (about 70). The doctors told me that oxygen is basically toxic to him.

Scope showed airway was fine. Adenoids and tonsils are fine.

Also, Ashton did have a fundo in Feb. 2008 and now has a g tube instead of a gj.


Thanks to everyone in advance. Anonymous posts are completely allowed, as I am sure those in the medical field do not want their names used since Ashton is not their patient and they do not have full access to records.

WARNING... THE VIDEO IS VERY EMOTIONALLY HARD TO WATCH.

Make video montages at www.OneTrueMedia.com