Tougher than Nails

IT’S NOT FAIR!!!! NOT FAIR! NOT FAIR! NOT FAIR!

Yes, even at age 27, I still want to throw an all-out-over-the-top-two-year-old-toddler-with-an-attitude tantrum.

But, whether I like it or not, life is simply not fair. Example: Abby got RSV at 7 months old and had to return to the hospital less than 5 months after we left.

You would think that, with everything we’ve been through, and how hard we’ve worked, we could relax a little. And with how well Abigail has been doing, we had hoped that we were ‘out of the woods’ with some of the bigger threats. I saw the time and trauma of the NICU as us sort of ‘paying our dues.’ But there is apparently no rest for the weary.

I don’t want to be over dramatic. I don’t want to make a mountain out of a mole hill. But in all seriousness, these past 2 weeks have been the hardest we’ve endured since we brought Abigail home from the NICU. And this one night in the ER and the PEDS unit ended up being more traumatic than 80% of our entire 3 month stay in the NICU last summer. As far as RSV cases go, Abigail really didn’t have it too bad. I know of some infants that are in the hospital for weeks and can barely breathe because of it. We never got close to that. That being said, it wasn’t a cake walk, either.

Abigail wheezes when she eats. This is normal. It goes away 10 minutes (or less) after she is done eating. It’s been this way for months. No biggie. But after we got home from our NorCal trip and started back in our routines, the wheezing was lasting a tad longer. But it was stopping, so I wasn’t really worried… until the day it didn’t stop. She wheezed all afternoon. My mother noticed it, and said something to Anthony. Then, Anthony told me about it, and that he’d noticed she’d been coughing a little. That same evening we went from “kind of wheezing” and “coughing a little” to her wheezing like an old man with emphysema and hacking-up-a-lung coughing. But, she still slept through the night, was still eating, had no fever or runny nose, or any other symptoms for that matter. As you all know from my last post, from there we saw Dr. S and were confirmed to have RSV.

Dr. S was hopeful that it would be a mild case because she’d had 2 of her 5 vaccination shots against RSV. It wasn’t much, but it was something. He told us that, at the stage we brought it to him, there was nothing he could do. No meds, no treatments, no help other than Children’s Tylenol and rest. Keep an eye on her and keep in touch with him. He told us that if her breathing became labored (which he described at 60+ breaths per minute) or if she became lethargic (and he reminded me the difference between lethargic and simply tired) to call him immediately. That was on a Wednesday night.

Thursday went as planned. Anthony and I went to work, my mother and father came to watch her for the afternoon, and all was as well as it could be. Around 6pm, Anthony was holding her and he called me over. He asked me if I thought how she was breathing was “labored.” Admittedly, she was breathing pretty fast. I said I didn’t know, so let’s count. We started a timer and started counting. I didn’t even get to 30 seconds and she had already taken 38 breaths… I didn’t wait to see how many she’d take in 60. I dialed Dr. S.

This is the point where things went downhill. Dr. S. was in his office. But his on-call staff didn’t check to see if that was the case. And I (still being “new”) didn’t think to ask. They told me, hey – it is after hours, you get the on-call Dr. So some man who was rather short with me and sounded annoyed at my call told me to go to the ER to get her checked out.

A) I was apprehensive because while I did think she needed to be seen, I didn’t think the ER was the answer. B) Dr. Saul HATES it when his patients get sent to the ER. He especially hates doctors who diagnose major issues over the phone. He super especially hates when doctors send HIS patients to the ER without even trying to reach him first. I tried Dr. Saul again, this time on his cell. I left a message asking for guidance. An hour passed and we didn’t hear from him. We felt like we had no choice but to go in. Better safe than sorry.

We were seen quickly. Chest X-rays were taken and a very nice ER doctor came to look at her. He sympathized with her pain – she was now VERY uncomfortable with everything and probably a little scared. But even then, she did better than the 5-year-old with the ear infection on the next bed. That kid was screaming like she was being tortured. Poor thing. Anywho – ER means they have to cover their…bases. Yea, that’s a nice word. So that meant the whole work up – including a blood draw. And the poor fellow they sent in to do it had little to no experience with infants…and it showed. Anthony had to hold her down, while I had to make sure she didn’t bend her elbow with a needle in it. She was scared, and in pain, and the two people she wanted to make it better (us) had no choice but to make it worse for her… torture for all three of us. (This is where I shout out to OUR nurses who never made me do anything like that!) Luckily it only took one try to get what he needed and he ran out of there like there was a fire-breathing dragon chasing him.

A Respiratory Therapist came in to give her a breathing treatment. And it was one of those moments when that golden light shines over things and that heavenly music plays out of no where. Almost instantly, she was better. Better breathing, higher comfort level, even a smile! And she wanted to eat, which was a great sign. AND Dr. Saul called! He was mad that his staff didn’t try to get a hold of him. He was sad that he wasn’t able to catch us before heading into the ER. He said that the X-Ray and breathing treatment were things he would have done, so he was pleased. He didn’t think the blood draw was needed, and he told us there should be no reason to hold us over night. He told us to tell the on-call Dr. to prescribe us a take-home breathing treatment and send us on our merry way. If only it was that easy…

So the ER Nurse, Darcy (who was very nice) tells us that the on call Dr. (Another Dr. S! Oye!) wanted to admit us for overnight observation and that she needed to put an IV line in Abigail before heading up to the PEDS Unit. We said that we wanted to talk to the doctor. Well, he was an on-call guy. The same one who was short with me over the phone. So he wasn’t actually present. He was making these plans without ever seeing Abby. So we told the nurse what our pediatrician had told us, and that we wanted to go home. To get it all cleared up, it would mean that on-call guy needed to actually come in. Well, he wasn’t happy about that. Over an hour later, he shows up, gives me a hard time about putting up a fight, and FINALLY takes a look at Abby.

She was doing better. He admitted that. But in this world of covering one’s ass, he still didn’t want to release her. He started asking me all sorts of questions, ones he clearly expected me not to know the answer to. (I think he was trying to make me feel dumb.) But of course I know what she’s been vaccinated with! In fact, Mr. Know-it-all, here is her vaccination card. Oh, you would like to know more specifics about her birth and our stay in the NICU? Great! Here is a copy of her patient summary written by her Neonatologist. Yes, I carry it with me EVERYWHERE. He actually said, “Oh. Wow. So you did come prepared.” Obviously, this guy would never be our doctor.

He walked away for a while to “consult” with someone. Half an hour later, he comes back and says something to the effect that, even though she is improved and will probably be ok, we must remember that she is a high risk baby. As Dr. S #1 couldn’t be reached
(at 11pm… duh) he had no jurisdiction on this particular call. On-call guy finally convinced me by reminding me that staying overnight and being “all good” was better than going home, not being all good, and having to call 9-1-1 at 3am. For the first time that night, I didn’t have a rebuttal. Better to be safe than sorry. So we stayed.

Ok. Up to PEDS we go for the IV and more breathing treatments. Oh, wait. For whatever strange reason, the ER nurse has to put in the IV. Um…. but she has no specialization in children, let alone infants. Oh, but that’s ok… if she doesn’t get it right, they can re-do it upstairs. Are these people nuts????? Yes, apparently they are. She tried to put the IV in her foot so that Abby couldn’t pull it out. Even though her veins are WAY better in her hands. And again, we had to hold her down. She screamed bloody murder… because the ER nurse had to wiggle the needle around in her vain to get it to flush. I was in tears. But at least it worked.

Anthony got her to calm down, and we were wheeled up to PEDS. We had a great Nurse named Elsa. She was sweet and helpful. And she thought Abby was adorable. For whatever reason, that always seems to help the situation. But it brought back so many memories. She was hooked back up to a heart rate and oxygen monitor that beeped pretty much every time she moved her foot. And the “bed” she was in was actually a cage.

My parents met us there for support and we got settled in. Another RT came in to give her another treatment, and Elsa was getting the steroid ready to give through her IV. Here was where the meltdown came in. Not Abby – Me. See, Elsa connected the meds to the IV and tried to push them through. But it wouldn’t go. It was clogged. She tried to wiggle it a little to clear it, and Abby screamed. She tried again to push it through and she screamed even louder. Elsa tried and tried and it just ended up hurting her more and more. She was screaming and crying, and I was sobbing. Finally it was just too much.

STOP! JUST STOP! LET GO OF HER!

Elsa knew better than to question me. She put Abby’s foot down without hesitation. I scooped Abby up in my arms and rocked her back and forth while she cried. She clung to me and wouldn’t let go. Through my tears, I looked at Elsa and asked her what we do now? This was obviously not going to work and I wasn’t going to allow anyone to try that again. She said the only solution would be to take that IV out and put another one in somewhere else. I felt defeated. She shook her head and apologized. She said she had no idea why the ER would insist on trying the IV downstairs when they had experts up here. She looked truly sympathetic. I told her re-doing the IV would be fine in a little while. Give us time. She said she would return in a few minutes.

Then, THE BEST THING she could have done, she did. She came back about 5 minutes later to say that she got an expert to re-do the IV. Sonia, one of Abby’s Primary NICU nurses was there that night and she was going to do the IV. Hallelujah!!!!!

Abby had calmed down, and I took her into a procedure room where Sonia was (covered from head to toe in her very own moon suit because we didn’t want her bringing RSV into the NICU!!!) and we got ready to re-do. She looked at both her hands, picked a vein, and was in and done in under 10 seconds. Abby cried, but she didn’t scream. And once it was placed and her hand was boarded (so she couldn’t pull it out) she was fine. It was like it never happened. And the meds flowed through it without any problems. Oh, my Lord, THANK YOU for NICU Nurses!!!

From there it was rather uneventful, thank goodness. Abby slept in between treatments and meds. The best part was that her day nurse was a PEDS/NICU nurse that we knew! She had helped with Abby while we were in the NICU, and it made me feel so much better. Around noon a new doctor came to see us – sent to us by our very own Dr. S! This new doctor was actually a THIRD Dr. S. Hahaha. He was great. Reminded me of our Dr. S. He was very pleased with her progress. And he did exactly what Dr. S wanted done in the first place – he prescribed us home breathing treatments and liquid steroids, and sent us home.

We spent the weekend resting and giving her the breathing treatments. We were back on lock down. And she was starting to get better, bit by bit. Abby did lose some weight, as she wasn’t eating much. But we’ll gain that back. And we couldn’t do any tummy time for 2 weeks, which seems to be our biggest set back at the moment, but in time we’ll get back on track with that, too. She did get an ear infection about 6 days in, which is common. Dr. S says even more common when put on the steroids, which is why he didn’t want us to get the IV in the first place, but with antibiotics, we got rid of that problem, too.

Abigail seems to have created a domino effect, tho. She got sick, then my mom got Strep throat. Shortly after, my Dad got a virus, and Anthony got a cold. So most of the week she was watched by her Great Grandma, and my friend Janelle (thank goodness for close friends and family living near by!) But everyone seems to be doing much better now.

As of this past Monday, Dr. S declared we were back up to about 90% better. We should be 100% by the end of the weekend. And we can put this all behind us. We will continue on with the vaccines because we can’t guarantee that she won’t get RSV again… boo! So we still have to be super careful until March. But this too shall pass. So even though I wanted to throw a huge tantrum about all of it, I didn’t. I figure if she can handle all she did and be the happy, smiling, adorable little girl that I put to bed this evening, then I can handle it, too.  As her God Mother, Miranda, so wonderfully put it, she is simply tougher than nails.

-Jen

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Creme De La Creme

So, you all remember my friend, Janelle, right? Taryn’s Mommy? Well, she led me to this site all about the Adoption, Infertility and Loss community that she is a part of. Every year, this site makes a list of the “Top Blog Posts” for the year about infertility and loss. I read about it and was intrigued because it said anyone could enter.

Janelle entered a post she wrote about the person that Taryn was. Her personality, her quirks, and just how amazing she was while she was with us. It was a wonderful post that had me in tears by the end.

I wrote to the people who head up this list and said that, no, I am not part of the adoption, infertility and loss community. In fact, I’m the exact opposite. “Fertile Turtle” as my father put it, and the Mom of the one who survived. But I wanted to enter the contest anyway – because I wrote a post about Taryn and her passing. They told me that I could enter because the subject matter was right on target.

I didn’t expect much. I’m not part of this community, and there are SO MANY blogs that are part of it. Truth be told, I entered a while ago, and I forgot about it. That is, until Janelle pointed out that we both had made the list! How cool is that?? I’m counted in the top 200 posts OF THE YEAR for this community. I felt honored.

So, I wanted to share it with all of you! You can check out the list here. Janelle’s post is #167, and I am post #170. It was the post entitled, “Walking on Faith” which was rated one of my top 5 posts of the year for 2010. Apparently, I struck a chord. And I’m proud of it.

Thanks, Janelle, for being my blogging buddy and a constant inspiration to me! And Thanks to all of you for reading so often!

-Jen

The Power of Prayer

Abby is perfecting this incredible knack for throwing a monkey wrench in my plans. She continues to teach me that I am SO not the one in control around here. So on the days that she whacks me on the head with that reality, I turn immediately to prayer. Today is one of those days…

I can’t tell you how much the words, “We are praying for you” got us through the first leg of this journey. And when people would ask me, “Do you guys need anything?” or “Can we do anything for you?” my answer was KEEP PRAYING. God is in charge and he needs to hear our voices. Even when things started to get really good, I still kept saying, “Please keep praying – this journey isn’t over.”

Well folks, the reality that this journey really isn’t over is upon us. We’ve hit another bump in the road. The NICU Nurses told us when they were getting ready to send us home that we would be fighting the good fight for Abigail for the next several YEARS.If I’m honest (which I try to be) I didn’t believe them. This is Abigail we are talking about here… Nothing can harm her, she was specially made by God Himself. It is so hard to really wrap our heads around the reality that it will be years before we truly know if Abigail will be a typical child when she is doing so well. She is still setting the bar and surpassing expectations. But, as it was in the NICU, there are good days and bad days. And there will always be an obstacle ahead of us, no matter how good things get. One of the biggest fears any of us have is Abigail getting sick. Anything from something small, like a cold, to something big, like a virus, has the potential to set us back, both developmentally and in growth. Any infant (not just preemies) who gets sick can have multiple problems occur due to that illness, but babies like Abby are even more at risk. And for micro-preemies, it could have a serious effect on the end result once she is “all caught up.”

Well, leave it to Abigail to go big. RSV (Respiratory Syncytial Virus) is certainly a biggie! It’s the one that EVERYONE of her caregivers has warned us about. All infants get monthly vaccines from the months of November to March to guard against it. According to good ol’ Wiki, RSV “is a virus that causes respiratory tract infections. It is the major cause of lower respiratory tract infection and hospital visits during infancy and childhood. There is no vaccine. Treatment is limited to supportive care, including oxygen.” Grrrrrrrrrrrreeeeeeeeaaaaaaaaat… (can you just see my look of disdain?)

Yesterday, Abby was fine. A little cranky, but no other symptoms. Then, last night, she started wheezing and coughing a little. Throughout the night, both got progressively worse. (Side note: A testament to how well she sleeps is that even with wheezing and major coughing, she still slept through the night. Not fazed at all). I called Dr. S this morning and waited for a call back. Abby slept most of the morning and didn’t really want to eat a lot, which is a BIG change. I went to work, still waiting for the call back, and my Mom took over her care. My Mom called me just before 2pm to say that I needed to take her in, no questions. Something was wrong and we needed to be proactive. She was only getting worse. So I called again and made an appointment for the morning. At about 3pm, one of Dr. S’s nurses (our favorite, Leddy) called to talk to me about Abby and what was going on. I told her we were coming in tomorrow morning, but the second I said the word “wheezing” she said no way – I needed to come in today and she and Dr. S would wait for us. So Anthony picked Abby up after work and I met them there.

Dr. Saul took one look at her and looked worried. He said straight away, due to her symptoms and what I was telling him, that he thought she might have RSV, but we needed to be sure. So Leddy comes back in to do the swab. Now, I know how much I hate it when they swab my throat to test for strep. I hate the way it feels and how uncomfortable it is and how much it grosses me out. How about you? Yea… I’m sure you hate it, too. Well this swab is the same idea, only a gag reflex on a baby won’t allow for a throat culture, orally. So, they have to swab the back of the throat via her nasal canal. Yup… you read that right. They had to stick that cue-tip thing UP HER NOSE and wiggle it around to get the culture. Poor baby! She was just miserable. She screamed bloody murder and it took Anthony a good 15 minutes to calm her back down. By the time we got her back to “normal” crankiness, the results were in. And it was confirmed… RSV. Booo.

Dr. S looked sad. I could tell he hated giving us that news. Especially because there is nothing we can do. It’s a virus. There is no real treatment. No meds, no shots, no nothing… just wait and see. I said, “So where do we go from here?” And he says, “We watch and wait. And if she stays the same, she will get better in about 7 – 10 days. And if she gets worse, we will have to re-admit to Los Robles for breathing treatments and observation.” And even then, Dr. S says that the breathing treatments don’t actually help her get better, they just help comfort her. Grrrrr.

The next week and a half are going to be rough. The toughest we’ve had since we left the NICU. So, we are on lock-down. There will be almost no exceptions to the “No Visitors” rule and we are back to the rules we came home with. Other than work, Anthony and I are canceling all of our plans and pretty much staying here to make sure Abby gets better and not worse. And my parents, who care for her while we are both at work, are on red alert! (Bless them!)

This is one of those times that I was talking about – the one where we aren’t NICU people anymore, but we still need prayers. Abby needs prayers for health and strength. Anthony and I need prayers for patience, strength, wisdom, and maybe a prayer or two for restful sleep. We need prayers that this will have minimal effect on Abby’s growth and development. And we all need prayers to stay far, far away from Los Robles (No offense, you know we love you all! But I don’t want to go back!) The Power of Prayer helped us get through the first steps of this journey and it will help us now. And I can almost guarantee that it won’t be the last time I ask for them.

Thank you to everyone for all of your support. I will hopefully post that “first blog  of the year” I’ve been working on soon. And in the meantime, I’ll do my best to keep you all posted on how we are doing here with this virus.

Stay healthy, everyone!

-Jen

2010 in review

What a year!!! 2010 was even more amazing than I thought, as far as my blog was concerned. I got an email today from wordpress that was all about my Blog Stats. In the past year I got around 11,000 (yes THOUSAND) hits. O.M.G. People! I feel loved. Thank you, all, for reading! Check out what wordpress had to say about Adventures of a Life-Aholic below. Cheers to an awesome 2011!

-Jen

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

Featured image

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 11,000 times in 2010. That’s about 26 full 747s.

In 2010, there were 47 new posts, growing the total archive of this blog to 95 posts. There were 146 pictures uploaded, taking up a total of 238mb. That’s about 3 pictures per week.

The busiest day of the year was September 15th with 248 views. The most popular post that day was Loving my body.

Where did they come from?

The top referring sites in 2010 were facebook.com, thosecrazyschuberts.com, jeniferfrancis.blogspot.com, twitter.com, and mail.yahoo.com.

Some visitors came searching, mostly for adventures of a life-aholic, 4 mo pregnant belly, rusty pipes colostrum, los robles ldr, and pictures of sacagawea with her whole body showing.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Loving my body September 2010
5 comments

2

My new reality June 2010
8 comments and 1 Like on WordPress.com,

3

Abby’s Birth Story June 2010
10 comments

4

Walking on Faith October 2010
5 comments

5

Humbled and Blessed October 2010
5 comments