Showing posts with label oxygen. Show all posts
Showing posts with label oxygen. Show all posts
Saturday, April 13, 2013
Kaidynn James, 29 weeker


Kaidynn James was born at 29 weeks. He was 3 pounds 8 ounces. Around 2 weeks old, things were looking great. Around 2 and a half weeks old they told us Kaidynn had a PDA/heart murmur. Not knowing anything about that, I was freaking out. 

Being teen parents, we didn't have anyone there for us besides our parents, but our parents weren't to happy with us either because they only got to see Kaidynn for a short period of time during their visits. At 3 weeks and 1 day old, Kaidynn had his heart surgery. 

After being on a ventilator for 3 day, he finally got put on regular oxygen supply thru a nosepiece. Since he was born with no sucking reflex, the doctors and nurses had to help teach him how to suck. Finally at 4 And a half weeks old, I got to feed my son his first bottle. He remained on oxygen until 7 and a half weeks old. He would do so good on his oxygen one day, then the next day he wasn't doing so well with the lower amounts of oxygen given to him so they had to up his oxygen. I knew he was a fighter. You could see it in his eyes. After praying and praying, he finally got the breathing thing down. 

When he was 8 weeks old, I went for my daily morning feeding and bonding time. His doctor came in, and she told me the news I had been dreaming of hearing since I found out I was pregnant. Your child is ready to come home. I was shocked. They told me he would at least be there till his due date, maybe longer because of the heart surgery. So at 8 weeks and 2 days old, I FINALLY got to put him in his carseat and in the car and head 35 minutes back to our house. I was shocked, scared, excited, and every other emotion possible. 

Now we will be 9 months on the 26th. He has two teeth. He sits up on his own, and we are starting to crawl! I always knew he was a fighter. He has showed us that you can overcome any obstacle put in your way. I still call up to the NICU at times to check and make sure the nurses are doing okay. Over our period of time spent in the NICU, they became family to us. I thank God everyday for my little miracle.

Monday, November 28, 2011

Our story actually begins back in August of 2010, after 3 long years of battling IF my husband and I decided we were ready to move forward with IVF. According to our RE it was the "safest" way to hopefully have a viable pregnancy with the least risk of mutiples. When the time came for our Egg Transfer, we were down to two A quality embryos with two more that were B quality to be hopefully frozen for later use. We made the choice to put those two A quality embryos back and two weeks later we found out that our 1st IVF attempt worked! We were elated. We also found out the other two embryos did not make it to freeze. It was another 4 weeks before our first ultrasound and I thought for sure I was going to have to scoop my husband off the floor the first time, not one but TWO heartbeats flickered on the screen and the doctor excitedly confirmed "IT'S TWINS!"

 With each passing week and each passing ultrasound we became more and more excited. Close family and friends already knew our BIG news, and we breathed a huge sigh of relief at 12 weeks (typically when miscarriage rates decline). At 13 weeks our world started to flip upside down. I was at work one evening and on a call with a customer and I remember feeling this gush almost like I had gotten a period. I remember putting the customer on hold and rushing to the bathroom. I didn't even have to look down, I was sobbing hysterically. I couldn't even get the words out to tell my supervisor that I had to leave. A coworker drove me to the closest ER where my husband met me and we waited, and waited, and waited. Finally the PA came in and relieved our fears...both babies looked amazing and my blood levels were where they belonged for now. The PA said it could have just been a SCH and in hind sight I remember mention of this being visualized on our first sonogram, but no mention on an sono after that...Not that that makes it any less scary.

I was sent home on bedrest and told to follow up with my OB in a few days.
I ended up switching OB's by week 14 because the OB we first went too was less the compassionate to our situation and lacked bedside manners. It was around this time that we made the decision for me to quit working as well. I remember always being to exhausted (I must have slept 18 hours a day). Things stayed calm for a few weeks until I got an alarming call from the OB just days before Christmas...my AFI came back higher the normal (not uncommon in twins, but alarming nonetheless). The day before Christmas Eve I was scheduled for an appointment with a Peri, after finding out that all "appeared" well, they revealed the gender of the twins... A BOY AND A GIRL... !!!! We were over joyed and excited. I remember when we found out Twin A was a girl, hubby was holding his breath until the tech revealed Twin B was a boy. He was covered in sweat and pale. When he spoke he said, "I thought for sure we were having two girls and I was going to spend a lifetime worry and cleaning my shot gun, at least this way she'll have a brother to help me keep an eye on her." We all breathed a sigh of relief.

And then the Braxton Hicks contractions started, they were weird and unexplainable but nothing I couldn't handle. The OB checked us and I had been to the Peri many times, all was well, until Jan 12th. Something was off. I remember laying down for a nap and feeling like I wet myself. For the most part I could have sworn there was a baby on my bladder and I felt pressure and urgency. This caused my first visit to L & D...after a 4 hour wait only giving a urine sample I was told everything was fine and sent home, no sono, exam, nothing. This went on for 4 days and it was sporadic but uncontrollable. After another visit to L & D and begging the on call to hear me out, they were convinced that I was "leaking" amniotic fluid, but each baby's fluid level measured well so I was sent home. the next day I saw the Peri again and Twin A's fluid was very minimal. I remember the ultrasound tech leaving the room and the long long wait for the Peri to come in.

Everything came to a screeching halt.......words were flying around, "Micrognathia", "ASD", "Possible VSD", "Not compatible with life if born prematurely," "Risk for infection" and then "Termination." The following words will forever echo in my mind, the Peri (not our normal doc, but his covering doc) said, "I am sure this pregnancy is very desired considering the route you took to become pregnant however I am telling you that it would be safest to allow us to terminate Twin A and give Twin B a fighting chance. And then we can test the other twin and determine what caused all this." Thank God for my husband (who is often quiet and reserved), he fought back when I was speechless and numb, I remembering him saying, "Do you see that little girl on that screen? Do you see her heart beating? That's OUR little girl, and not a chance in hell we'll terminate. As long as her hearts beating we'll fight for her. She's not a science fair project and she'd not a statistic for one of your textbooks. She's a human being, and our child."
The Peri went on to call us selfish and stated that "Clearly we didn't understand the risk, and I could get an infection or worse. And we were risking loosing both babies." At that point I found my voice and asked this Peri to leave. The ultrasound tech was in tears with us, and paged my OB. Luckily for us he was in the same location that day, and had me come in for an appointment. He explained all the risks to us in a much more civil way and promised to support our choice. He also helped us set up for a second opinion at another high risk center. I was only 20 weeks along, babies born at 20 weeks don't survive. I was given a round of antibiotics and sent home. Prepped for the worst...most pPROM (Preterm Premature Rupture of Membranes) cases delivery within 24-48 hours.

Weekly appointments and strict bedrest for the next 4 weeks...every day I prayed and cheered these babies on. Pleading that they stay put. At 25 weeks I was admitted to L&D for steroids, after they were complete I begged the docs to let me go home, the thought of staying in the hospital was too overwhelming. The doctors understood and sympathized but I would have to sign out AMA. In a bold move (that some strong disagreed with), and with hubby's support I signed out. I came home on a Friday. Saturday I felt ok, anxious but ok. Sunday I felt like I was coming down with the flu. I couldn't get comfy and I felt like baby B was under my chest and I was just plain miserable. By Monday morning (26 weeks) I knew something was wrong. Before my husband went to work I attempted a shower, but it didn't help. I was convinced this was it. Hubby called his boss and we headed to the hospital. By the time they got the monitor hooked up right I was contracting 3 minutes apart.

My OB walked in and did an exam. Not dilated, but the look on his face told it all... Baby A (Addison's) heartrate was dipping and the sky rocketing. My OB looked at me and said, "Well Happy Valentine's Day! Your babies will be here by lunch," he turned to the nurse, "Start prepping the OR." At 1:10 Addison made her debut and Blake arrived at 1:11. It took another 45 minutes to stop my bleeding and stitch me up. The NICU team brought Addison by in her "carriage", aka mobile isolette, and said "Hi Mommy," then swoosh, gone. I don't even remember what she looked like. Blake was taken to a separate OR with a separate NICU team, hubby was the only one who got to see him.

I "met" both my babies for the first time around 6pm that night. It was then we were told that Blake was stable, but Addison needed to be Baptized if we so desired (the hospital only does them in life or death situations). It was all a blur I nodded yes and the Pastor performed her bedside Baptism. I sobbed, the nurses cried and then I was whisked off to my room in Mother/Baby to recover. I didn't make it back to the NICU until much later when I was finally able to walk. By that point the Neo had already paid us a visit and asked just how far we wanted him to go with Addison... Without a doubt our answer was, "All that you can do."
We later learned a lot of things that we didn't know in the beginning. Addison left us for a period of time once she arrived in the NICU, the doctors were sure she wasn't going to make it. In the first 48 hours of life she had several chest tubes, was on the Oscillator and we were warned that we might be faced with some tough choices in the coming days. Blake was such a rockstart and did fairly well. He remained stable most of his NICU stay. Once the dust settled, we learned that Addison did not have Mircrognathia, she did have a PDA but no ASD or VSD. (How wrong the Peri was). Genetically speaking all of her bloodwork was normal at this point. Both of our babies continued to defy the odds every day.

They are both now 9 months old, we've had some rough times but we've all survive. Addison does have a cleft palate that wasn't found until probably 35 weeks adjusted, and she had surgery for a Nissin Fundo and G-Tube. Most of her nutrition comes from the G-Tube, however we are working daily on increasing her oral feeds. Our goal is to have her ready to transition away from the G-Tube after her cleft palate repair in April/May 2012, so closer to her 2nd birthday. Blake came home from the NICU on oxygen for feeds only and a monitor for about a month but is otherwise doing well. He loves, loves, loves to eat solids and is undeniably a Momma's boy.


Monday, November 21, 2011
My son, Zach, was born at 26w and 3d gestation. From the beginning, we had a very easy ride. He was on the ventilator for a few days, and then moved to the CPAP for several weeks. He went back and forth between the CPAP and high-flow nasal canula as his impending discharge approached. Then, it came time for his room-air trial about 2 weeks before he was sent home.

Apparently, our insurance company wouldn’t allow our son to go home on oxygen without trying to breathe room air first. The nurses and doctors were setting the stage that we’d end up having to come home with Zach on oxygen for a short time, but then he surprised everyone. He did great on his room air trial. He’d always had a lot of apnea and brady episodes, and putting him on room air didn’t seem to affect that. By that point, he was only have an occasional apnea or brady, and, since he wasn’t requiring any stimulation from them, our NICU was prepared to send us home without them being fully resolved.

After a week or so, it became apparent that Zach was going to need at least some oxygen support. His weight had leveled off, and the staff thought it was because he was working too hard to eat and wasn’t getting enough oxygen. So, we were sent home with oxygen only with feeds (I had major emotional issues with him going home on oxygen at all, so oxygen with feeds became the compromise). All babies that go home on oxygen are also sent home with an apnea / brady monitor.

In Zach’s first month home, he had 38 events, none of which required stimulation. He hadn’t had a stim event for many weeks before discharge. He remained on the monitor for a total of about 5 months (until 4 months after his due date). At first, it was hard, but it got much easier. 




Looking back, there are a few things I wish I would have known:

    1. Don’t compare your experience to that of others. My son had a TON of bradies in the NICU. That was his “thing,” but he never had any serious complications. Overall, we were very fortunate that our baby born at 26 weeks never had any complications (and I always knew that), but it was still hard not to compare him to other preemies who were on monitors for just a short time.
    2. Be patient. That’s so hard to do, but it’s true. Someday, it will all be a memory. My son is almost 10 months old now, and the apnea monitor is just a memory at this point.
    3. Be assertive. My son NICU time was at a different hospital than the NICU that managed his monitor. The NICU where my son was born was very progressive with just about everything (they wouldn’t have sent us home with a monitor at all if he hadn’t required the oxygen, even though he was still having bradies), but the NICU that monitored his monitor was much more old-school. We were very aggressive about trying to get our son of the monitor because we truly felt he didn’t need it. After the first month, he would only have an episode every week or so, which is about what you’d expect in a term baby. When our monitoring NICU gave us the option to take our son off the monitor at 4 months corrected, we jumped on it.
    4. Figure out a way to make the monitor work with your lifestyle. When our son was on the monitor 24x7, we basically just stayed in the living room all day. It was also flu season (he came home at the beginning of April), so we were quarantined regardless. We did take him for occasional walks, which helped, but, with learning to breastfeed and adjusting to being home with our baby, we were fine staying home. After the first month or so, we were allowed to only have our son attached to the monitor while he was sleeping – he could be off of it if we were watching him. Even then, though, we kept him on it most of the time. Why not? It gave us peace of mind.
    5. Check in with your husband on how he feels. My husband loved the monitor. LOVED IT. He felt that it gave him so much peace of mind to know that our son was still breathing when he was out of our sight. I, on the other hand, was always ready to let it go. Maybe I was just in denial of the situation, but, regardless, getting on the same page with my husband was important.
    6. Be ready to let it go. Someday, you’re going to have to let the monitor go. It’s scary, and many parents are like my husband in that they like the peace of mind the monitor brings. If you feel that you need the monitor longer, ask for an extension. But, in some ways, you’re just delaying the inevitable. If you KNOW your child is ready to give up the monitor, try to take the leap.
    7. Hydrocortisone helps with rashes caused by the leads. My son developed a rash from his leads, and I wish I’d asked his pediatrician about it sooner. Hydrocortisone would have helped more if I’d started it sooner. I also should have used the lead belt sometimes to give my son’s skin a break. We usually kept the leads on 24x7, even when he wasn’t hooked up to the monitor. I should have figured out sooner how to give him a break.
    8. Change the leads frequently, and don’t feel guilty about it. The medical device company couldn’t understand why we were going through so many leads, but it was because we were changing them every day. My son got a bath every day, and we always changed his leads when he got a bath. If he had old leads, they’d have all sorts of false alarms. It’s not worth your sanity to try to save money by reusing old non-sticky leads. Don’t feel bad about requesting more, and don’t take no for an answer from the medical device company.
    9. Save an extra set of leads for your baby’s baby book or memory box. I grabbed a set before we sent the monitor back, and I’m glad we did. It’s a part of the experience, and, while it wasn’t a happy memory, it was still a part of the story of my little guy’s early days.
    10. CELEBRATE when you finally get to give that thing back. You know that scene in office space where they smash the printer? I always envisioned doing it to the apnea monitor. I didn’t, of course, but I fantasized about it all the time. I just had a beer instead.

Here’s the scene from Office Space, if you’ve never seen it: 



Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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