G and I got to go up to Indianapolis together today. As we were driving, we talked about how Elise was doing so well and how happy we were with everything that had taken place. Now that it looked like she was taking to the CPAP, X-rays and blood gases would probably be "when needed" and she just needed to grow, grow, grow getting all that milk!
As we were approaching the south side of Indianapolis, I got a call on my cell phone from the NICU. It was Elise's doctor. He said, "Mrs. Olsen, I need to tell you what just happened." {heart stops now}.
Dr. Ben Saad said Elise started to tire out on the CPAP and drop her oxygen levels (we knew this was a possibility... but usually only in the first 12-24 hours of going from the vent to CPAP). The doctor went on to tell me that he had to reintubate her and put her back on the vent. He believed she truly just tired herself out, but in order to not miss anything, he ordered a full work up to check for infection and he started antibiotics. He noticed her blood was a little low, so he also ordered a blood transfusion. Her belly was distended so he canceled feedings for today. His words that stuck with me were, "She looked pretty sick right before we put her back on the vent." Luckily, at this point, G and I were 30 minutes away.
Although I know the NICU experience is a crazy roller coaster, I still hold out hope that MY child is going to sail through until she comes home. In a way, Elise spoils us with her amazing strides :) She went from oscillator...to vent...to CPAP since last Friday. Talk about amazing! However, I'm not going to mask being bummed out today. Even though we had heard from the doctor before arriving, it will still so hard to see her extremely worn out when we got to the bedside.
After spending some time in the NICU, Elise got her color back and her spunk! She worked her way to only needing 28% oxygen from the vent. Dr. Saad said they would probably try CPAP this weekend or the beginning of next week. They don't keep their babies on the vents any longer than needed. We respect and appreciate that. Elise will do this on her timing...haven't we said that before? She is running the show, folks. I'll never forget one of her doctors saying, "I work for Elise." I thought that was a wonderful way to look at his very admiral job.
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Let me start this 2nd part of the blog tonight by saying this: Elise has some AMAZING nurses in the NICU. Many of them treat Elise like their own baby, and for that, I am forever grateful. I'll never be able to repay these women for being the "medical mommy" to Elise during her most critical times.
Let me also say...I might ramble tonight, but I've got to "write this out."
Elise's nurse was one busy lady today. She had all the doctor's orders to fill, and all the while, keeping a close eye on Little Lady who was very tuckered out and liked to drop her oxygen at different times throughout the day because she wasn't taking her nice deep breaths due to the exhaustion. Elise was what you would consider an "unstable patient" today.
As with all occupations, there are lunch times. In the NICU, the nurses rotate lunches and when one nurse goes to lunch, another nurse promises to watch over her babies. 99% of the time, this plan works great for Elise; except the last 2 days.
When I have gotten back to the bedside from eating my lunch, Elise's nurse has been at lunch and someone has been "watching over" Elise (completely understandable). However, that "watching over" nurse hasn't been visible the last 2 days when Elise has dropped her sats. Yesterday, I tracked down a random nurse to come help Elise when I noticed the monitors were not "pretty." Today, I really had to search for a nurse available. When I finally got the nurse to Elise's bedside, Elise's oxygen was at 13% (they want it sitting between 88-95%). Of course, there are alarms for everything, but for some reason, her alarms were not going off. Maybe she wasn't as critical as I thought she was...but with her rough start to the morning and an oxygen level of 13%, I couldn't help but panic and go seek someone quickly.
Because today was the 2nd day that I had to hunt down a nurse during lunch times, it didn't sit well with me. It continues to bother me even tonight (hence, why I am writing about it).
Of course I don't want to be "that mom" that all the nurses talk about. I have many more weeks in the NICU, and the last thing I want to do is get a name for myself. As a teacher, I remember "those parents" that you wished would have just let you do your job as a teacher. After all, everyone is skilled in different areas and I do have much, much respect for these nurses and their incredible skills.
HOWEVER (and that's a big however), it is not my job to track down nurses to attend to my daughter no matter what time of day. Do I feel helpless when I'm in the NICU? Absolutely. I can't change oxygen settings. I can't put in OG tubes or draw blood or suction out the vent tubing. I can't even hold my daughter without a nurse, respiratory therapist, and doctor standing right there. I can't. I can't. I can't.
I CAN speak up for Elise as her mother. Here's the question (especially to all the NICU mommies out there): Do I react or relax? Again, I don't want to be "that mom" that is always watching over the nurses and being overly sensitive to things I do not fully understand. I also know these little preemies can change their sats in the blink of an eye (that's why they are in the NICU). Maybe a nurse had just checked on Elise right before I returned from lunch. However, an oxygen level of 13%, and no nurse nearby, is absolutely unacceptable in our eyes. If this would happen again and Elise would actually code, I would feel completely guilty (and quite angry).
All of this also makes my "at home" days quite difficult. I'm constantly thinking, "is someone sitting close by and watching Elise's monitor?" 99% of the time I could say "yes" with complete confidence, but it's that 1% of the time that keeps my mind worrying.
Speaking of worry, tonight must be a "worry moon" night. Why is my blog post all over the place? Why have I been totally consumed with this "nursing issue" since 2:00 today? Why are friends' and family's text messages of pep talks not settling well with me today?
Elise having a rough day unexpectedly always seems to throw me. As much as I can tell myself to expect the roller coaster, I haven't been able to "not be surprised" by a step backwards. I also have started to feel very helpless when I am in the NICU. Even when Elise was crying yesterday on the CPAP, I couldn't soothe her -- she's hooked up to a million wires, and she needs that isolette and every single wire. I can't pick her up and start rocking her. Oh how wonderful that will be someday, but that day is not in the immediate future.
Right now, I can change her diaper twice a day and take her temperature. All the newness has worn off. I want more. I want to feel needed. I am her Mommy. I don't want to wait until May. She is here now so I want to be her Mommy now.
Dear God...Let. Me. Feel. Needed.
To end my night, I will stare at this on top of our entertainment center. I know I need it. No one said this time in my life would be easy, that's for damn sure.
I already feel a teeny weeny bit stronger just by "writing it out."
Preemie steps for Momma too,
J
Jay - you are an amazing woman - an amazing new mommy! All of your family is cheering for baby Elise and for YOU. You are an incredible young momma and I love you so much! Praying right now for God's strength to flood your heart and your mind. It is so hard to deal with everything but especially hard when you are SO tired. He will lift you up all night and grant you peace and rest - all the while He is holding our precious Elise in the palm of His hand!
ReplyDeleteJessica, I am a good friend of your sis Karen, and I just love following your blog about this wonderful lady, Elise. You are doing a WONDERFUL job and she definitely needs her Mommy, even if you can't physically do anything for her. If you are worried about the lack of nurses I would definitely say something. You don't have to be harsh but just share your concerns with a head nurse or doctor. Maybe they can ease your fears if there is a simple explanation, or they can look into the matter if it sounds like a serious issue. Maybe you can't hold her, but I bet she'd like a song and dance :) Might entertain the nurses as well! Can't you just picture her little mind thinking "Oh come on Mom, you're embarrassing me!" Just know that your whole family is in a lot of prayers and even strangers like me adore your baby girl. God Bless!
ReplyDeleteYou remember, I know, the many conversations we have had about how watching our parents suffer changed us and gave us a different view on life. Darlin' you are watching your precious baby girl fight with every tiny ounce. You have every right to speak up. It is going to be very natural for your patience level with others to be very low. You have high expectations for yourself and therefore, of others, particularly the people you are trusting your little girl with day and night. You have every right to fight right along with her. Just do it with your own style of grace and dignity. You are stronger than you even know. I had a very dear friend years ago who was of the Mormon faith. The most interesting thing she shared with me was the belief of Mormons in the spiritual world. They believe that babies have a soul even before conception. They are in the Heavens with the Heavenly Father waiting to be sent to Earth with the family God chooses for them. I loved that and found it so inspiring and special and it has stuck with me and think about it every time a baby is born to someone I know. I believe God knew that Elise was going to need a very strong and special set of parents so He chose a physician of the body and a teacher to guide and nurture her through life. Even though you feel helpless, you are doing exactly what God intended...fighting for her, praying for her, pushing her, loving her, standing beside her, and inspiring her. You are doing exactly what you are suppose to do. Never feel guilty for standing up for your baby. You have to be dealing with so many emotions and I'm sure anger and frustration are at the top. I'm still praying for you and I think about you every day. I know you are counting the weeks until you bring that bundle home and cuddle with her in your own home. KR
ReplyDeleteAll of your days, no matter what situation, you are her mommy and you will always protect her, fight for her, take up for her, love her to depths beyond imagination!! I know for a fact I would have done the same thing and feel the same way. Once a mommy, things are never the same! Our babies are the greatest creation God gives us! I'm glad you "wrote it all out" and feel better to have so many people behind you. Your strength is amazing...continuing to pray for Elise and for mommy & daddy! Love you, Jess!!
ReplyDeleteOh.......I can so relate. Sarah Kronland sent me your way- I just went through a very similar situation. Tessa was born at 28 weeks, 2 days. If you ever want to look at her journey, it is at www.infertilitystruggles.blogspot.com. We spent 73 days in the NICU, and those were LONG days of trusting complete strangers to care for your baby.....and most have zero emotional attachment. If something happens, they might care, but it won't affect their life in the same way.
ReplyDeleteWe had many, many long days of taking shifts so that Tessa would not be alone for the very same reasons.
She was on and off CPAP for most of the time there and there were times she was desating like crazy and we would have to run around and find a nurse. I once walked in and she had pulled off her CPAP, was really struggling, and no one had even noticed because none of the nurse's were sure she was their patient. NOT responding to alarms was one of my biggest frustrations. The other thing was the lack of consistency....but that is another subject all together I guess.
I have a story, and it has a point, so I hope it is brief enough for a complete strangers blog:-) This is WHY I fought as hard as I did- not because I was mean or didn't trust the nurse....but because at the end of the day, it saved my baby's life and I am her ONLY advocate.
On a Saturday night, I could tell Tessa's breathing sounded funny. Her nose seemed clogged, which is detrimental to these little nose breathers. It is hard enough for her to breathe on her own without one nostril clogged since she was trialing off CPAP.
She fought and fought all day Sunday to keep her saturation levels up and I could tell she was tired.
Monday, when the doctor rounded, I asked him to put her back on CPAP, since she was retracting pretty consistently.
Her respiratory rates were still pretty good at that point, so she stayed on room air and we listened to the dinging all day as she de-sated.
Monday night rolled around; even our primary nurse immediately noticed her pale appearance and difficulty breathing.
She drew blood for a CBC, which showed that her hemoglobin was low. The decision was made not to do a blood transfer that night.
Tuesday morning, I went to her bedside early to make sure I caught rounds. Dr. Gelfund came in, and we spent forty minutes talking through all of her issues- the nose being clogged up, my apprehension with NEC associated blood transfusions, if a possible milk allergy was causing the anemia.
ReplyDeleteA bunch of different tests were run; each one came back normal.
Dr. Gelfund said that Tessa was in need of a transfusion, and it would perk her levels back up so she wasn't so worn out. He suggested to hold her 2 pm feeding, on the off chance that would help keep NEC from occurring.
I guess a good explanation of NEC is probably in order, but I am not exactly an expert on it. NEC is a condition in which the intestines begin to die. The bacteria start attacking the intestinal wall, which can lead to a perforation. There are varying degrees of severity. In the most extreme cases, a baby can be completely fine one day, and die within hours because the entire bowel wall turns to acid.
Premature babies are always at risk for NEC. As she got older, her risks were decreasing with each additional day. Dr. Gelfund knew how against the transfusion I was, and came touting research on babies her size.
At DeVos, they generally only see 2-3 cases per year in babies over 2 lbs, 2 ounces at birth. Very few over 32 weeks (Tessa was 5 weeks old, almost 34 weeks). Normally NEC appears in the first two to three weeks of life. Almost always when full feeds are established (she had been on full feeds for weeks).
They also cross checked the number of NEC cases within 48 hours of a blood transfusion. In the past 2 years, only 2 have presented after a blood transfusion.
I told him to go ahead, but warned him that "we would have words" if she contracted NEC.
Night rolled around, and Tessa was a lethargic. Not terribly alarming considering the amount of poking and prodding she endured.
But, mamma knows best, and I just had the feeling that something was off. I called 3 times between the time I left at midnight and 5 am.
All the nurses said "She is fine, She is fine, She is fine". I barely left for five hours, cause I just knew something was wrong.
Josh arrived at 8 am. She was agitated, but not overly so. She had a 3 ml residual from her last feeding, which sent off a tiny alarm bell for me. Tessa never had residuals anymore. I arrived around noon.
At two pm, I went to change her diaper. It was bloody, a tell-tale first sign for NEC.
ReplyDeleteI asked the nurse if she thought it was bloody.
"I've seen worse", she said.
I asked about her 8 am stool, and she told me that also looked a tad bloody.
"I wouldn't worry about it", she said. "Her stomach looks and feels normal".
She wanted to go ahead and feed her, which I had previously read would make NEC worse.
"Would you mind sending it down to see if it was blood and informing the doctor?" I asked her.
She called Dr. S, the on call neo, who again advised to push the feed.
At this point, I was doing skin to skin with Tessa and she was acting so uncomfortable. She would not relax and kept squirming around and flexing her stomach.
I knew it was her belly and that it hurt.
I told the nurse again that I was really uncomfortable with feeding her. With all that was going on, I wanted to see a neonatologist. Preferrably Dr. Gelfund.
After making me feel stupid, arguing with me that she had already called Dr. S and got his decision, and pointing out that Tessa had no other signs of NEC so it would be fine, she took a sample of the stool.
As I was crying (the ugly cry, mind you), I heard her slam the trash lid down and leave the room.
And didn't come back for an hour and a half.
Now, that is fine if Tessa was in her bed, but she was laying on my chest. It is really difficult to navigate lifting up the top to her isolette and putting her back in there safely with all the cords and wires attached to her. The two CPAP tubes are really heavy, so if they hang unassisted, they pull on her little nose back and she screams in pain. I almost never do it by myself because there is so much to work with to get her put back correctly
After fifteen minutes of finagling cords and wires, I finally swaddled her back up in her blanket. I was leaning over her, trying to comfort her, and whispering "I love you" as Dr. Gelfund came in.
ReplyDeleteHe took one look at her stool and told the nurse to discontinue feeding her until we got more bloodwork and an X Ray.
The X Ray came back normal fairly quickly, but it took about an hour to get the bloodwork back, confirming that she had elevated CRP. He bumped her from suspected NEC to probable NEC.
It would take 24 hours to know what the disease was going to do and how aggressive it would be.
Josh and I watched the clock as night dragged on. My parents came up to sit with us. Our pastor came in and prayed over her.
Another X Ray was taken at 11 pm, which did not show progression of the disease. The 6 am X Ray showed "gassy bowels" but no bubbling of the lining (thank God!)
We had another XRay and more bloodwork planned for the next morning, which showed NOTHING new.
Tessa, Grandma, and I had a very tough day and night, since she was not allowed to eat for the next 7-10 days as the antibiotic kills the bacteria threatening her bowels.
As for her nurse, vindication came as Dr. Gelfund left the room after we got the official diagnosis.
"You didn't hear it from me, but I am SO glad you did not let them feed her" he said, as the nurse stood by.
I honestly think my advocacy saved her life. I think often abotu what would have happened if I had not been there to notice the bloody diaper and FIGHT for her to not feed Tessa. That nurse was seriously SO mean to me, and made me feel like the biggest idiot because I did not want to push the feed.
http://infertilitystruggles.blogspot.com/2011/08/big-belly.html
This is another one in which I write of my frustrations.
As time went on, I cared less and less about being "that mom" and more about getting Tessa the best possible care. It is so tough when you are away, and have to trust strangers.
I guess my biggest advice would be to find a few primary nurses that you trust and that can bond with your baby. We had about seven that I felt grew to love Tessa and that did make a big difference in the level of comfort I had while leaving her (not that I left her much LOL).
ReplyDeleteYou would think that, as time went on, this all gets easier. In some ways it does....but the road becomes so weary because you just want them home. Then all the sudden you are like "What? They are coming home? I am not ready! LOL"
I am here if you have any questions---909-528-8724 or I can be of any support whatsoever. My prayers will be with you, as it is a LONG journey....and I hate to tell you that it is a roller coaster to the very end. Tessa pretty much had an easy NICU journey (other than the NEC, she never was vented or had any other issues) and it still was SO emotional and draining. It's your baby, after all!
By the way, I was reading a few of your other posts. Bradys and Apneas scare the crap out of you the first time, don't they? I have heard other mom's say that got very used to them. While I cannot say that I ever got to that point (I hated them until the day we left) they do become easier. Just wait until you start bottle feeding- UGH! Tessa would desat and brady constantly! Here is hoping for a decent night of sleep, great CO2 numbers, and a little girl who stays strong!!!
ReplyDeleteAlso, since NEC is always a huge concern for me---is she on Prolacta???