Wednesday, May 18, 2011
Chapter 11 "Surgery"
Please keep little Sweet Pea in your prayers this week because on February 18 she will be undergoing a surgery on her stomach so she can no longer have severe reflux. It is called a ‘nissen fundoplication’ aka a ‘fundo’. The surgeon will wrap part of her stomach around the bottom of her esophagus so nothing can come back up. Unfortunately, it is permanent but some become looser over time. And since she is so small she may or may not need another surgery when she gets older. Since the fundo prevents acid from her coming back, she will not aspirate the acid into her lungs anymore! She will, Lord-willing, no longer have As and Bs! The surgery prevents acid from coming back up but also makes it very difficult to throw up or burp. Therefore, she will also have a g-tube place directly into her stomach. In most cases, a g-tube is put in to feed directly into the stomach. But since the therapy is working so well on her swallow, she may only need the g-tube for venting purposes! We are hopeful she will be able to maximize her oral feeds and minimize feeding through the g-tube.
Although surgery is the last resort we feel like the doctors and feeding teams have tried everything. Reflux is very common in infants, even more so in preemies. Parker just has severe case of it that can’t be fixed clinically. But, we feel very blessed that a surgery may fix Parker’s problem and she does not have an underlying disease or condition, words that have been spoken to us several times. The Lord is sovereign and knew we could handle anything but we are thankful our little one’s issues may be fixed by this time next week!
We are prayerful that Parker will finally come home in a couple more weeks after she recovers from the surgery. She will be 3 months old on this Thursday the 17th and is currently 8 lbs and 5 oz. This precious blessing is indeed a miracle!
We are thankful for each of you and the power of prayer!
Chapter 8 "Tests, Tests, Tests"
Just to show you a bit of what life was like in our case with OUR preemie. It’s rare this many tests are needed. And babies go home usually around their due date (and from what we observed, usually before). But our life soon became full of tests and waiting because of Parker’s issues. Her main issues were “As and Bs”. A= apnea, where she would stop breathing, usually associated with her turning color. Her pale face would turn dusky and her lips a light blue. Parker will desat a lot (some part of her body is not getting enough oxygen and so her saturation level would drop), but it’s where she actually holds her breath and/or stops breathing that had everyone worried.
Parker has put us all through some scares because of how significant her desats were. She would get that color change as she held her breath and would need to get her oxygen turned up or even sad to say, need to be bagged. Meaning they would put the oxygen mask over her face and squeeze air into her little lungs as she lay their limp. Took a year off one of our favorite nurse’s life as little stinker decided to give up on breathing, again.
But, as she has grown older, and has consistently now got mommy’s milk since January 7th (she had only been on milk a day or two here and there and then immediately taken off because her little body couldn’t handle it), she has grown out of a lot of her preemie issues. Yet, she was still having As and B’s. One of our final tests at SACH , a ph probe study, showed Parker’s severe reflux. At CHOC, they took her off all meds to observe her and we soon learned she is refluxing 65% of the day and she is aspirating into her lungs. They tried maximizing her meds, thickening her feeds with rice cereal, positioning, and yet her severe As and Bs have continued.
Her latest ph phrobe with the numagram test showed she is refluxing 65% of the day, but no central apnea. The doctors believe she had both going on, severe apnea prematurity in combination with the severe reflux, but now there is no more central apnea! Praise God. The MRI of the chest showed an aberrant subclavian petruding her esophagus, making a slight indent into her esophagus, causing some of her swallowing/aspirating problems. But not all. Her aortic arch artery going to the right instead of the left. Just another unique little thing about Sweet Pea! As far as the indent on the esophagus, the cardiologist is confident she doesn't need surgery for that and as she grows her esophagus will grow larger in proportion to her artery. CHOC does a therapy called “vital stim” on infants and it has improved her swallow tremendously over the last few days. It's strengthening her muscles to get past that little indent and teaching her to protect her airway with a strong cough, which in return in preventing her from silent aspirations as the an esophagram showed.
HEAD/NEURO
3 Cranium Ultrasounds. The first two were to check for brain bleeds (common in preemies) and the last one was to just triple check since she was still having significant A’s and B’s.
December 14- EEG Result: Abnormal, but could be normal since still preemie.
January 5 – MRI Result: Normal
January 7 -Consult with pediatric neurologist. She ordered 4 Metabolic blood tests.
Results: They all came back normal, giving us peace that there was connectivity between her neuro and muscles!
January 21- Had a “seizure.” Dr. ordered stat EEG which came back abnormal with “spike in the temporal lobe and low thresh hold for seizures”. Started a med called Phenobarbital and had a horrible reaction to it. Ended up on Keppra
@ CHOC
February 3- EEG.
Result: Didn’t show anymore seizure activity. Praise the Lord! Will continue the Keppra until outrgrows the dose to be safe!
February 6- MRI
Showed mild atrophy- fluid to brain ratio is a little more, which can be common in preemies. Will be followed developmentally.
INFECTIONS
November 28- December 2: bacteria infection in lungs causing pneumonia. Back on the ventilator and put on 2 strong antibiotics.
December 14- Positive blood culture showed staff infection from her pic line. Put on 10 day course of antibiotics.
January 10- Another positive blood culture and 7 day course of antibiotics.
February 7- pneumonia again from aspirating into her lungs.
HEART/CARDIOBorn with a bicuspid aortic valve, which usually means nothing until your 4th or 5th decade in life. 1-2% of people have a bicuspid aortic valve. Complications can start in infants and valve replacement may be necessary. They may or may not need a replacement when they are older. Complications include: congestive heart failure, Leakage of blood through the valve back into the heart, or narrowing of the valve's opening.
January 5- Consult with pediatric cardiologist.
Result: Bicuspid aortic valve still looks great. No cardio problems! This was a big praise because so many thought her issues pointed to a heart problem.
@CHOC- The MRI of the chest showed an aberrant subclavian petruding her esophagus, making a slight indent into her esophagus, causing some of her swallowing/aspirating problems. But not all. Her aortic arch artery going to the right instead of the left. Just another unique little thing about Sweet Pea!
STOMACH/GI
December 14- Kidney ultrasound Result: Normal
December 24- started reglan because one the nurses noticed reflux like symptoms.
January 7: Upper GI Result: Normal
January 21: Barium Swallow Study Result: Normal
January 23- had a ph probe put in. So another tube went down her nose into her stomach to see how much acid/reflux over a 24 hour period.
Result: Ready for this… ABNORMAL!
@ CHOC
February 3- ph probe study with a numagram test. After being taken off all her reflux meds at CHOC so they could observe her, they wanted to see if the reflux correlated with her apnea spells.
Numagram Test Result: Apnea- NORMAL! She could finally me taken off the medicine she was on stimulate her brain to remember to breathe!
Ph Probe Result: SEVERELY abnormal! Sweet pea is reflux 65% of the day. Her reflux is so severe it is also aspirating back up into her lungs.
February 4: Esophagram x-ray
Result: Showed silent aspirating into lungs on swallow too : ( . The feeding team will start vital stim therapy.
February 7: Chest MRI
Result: Aberrant subclavian artery is pushing up again esophagus, making an indent. This is just the way she is born.
FEEDS
Parker was off feeds for almost all of December except a day or 2 here. And only a few days on in November too. Though I insisted my milk was the best thing for her, we learned that babies guts are the first stop working when there is other issues and are the least important compared to the heart and breathing. So in reality, mama didn’t know best at first. But I sure did when I insisted on breastfeeding over and over again and finally on January 27, they let me and she did awesome!
She was pulled off feeds the first time because of a NEC scare. Her bowels stopped making ‘moving sounds’ and how much residuals she was having, along with that scary green stuff you don’t want to see when you pull back the air and from the NG tube.
January 7- she went back on feeds and seemed to be tolerating them well. No turning back since then. She started to chub out too with getting mama’s milk every 3 hours! She still got them through the NG tube was slowly starting to add in bottle feeds.
This became an issue as she soon showed a cough and A and/or B with each bottle feed.
BREATHING ASSISTANCE
Was told she had chronic lung disease at one point, but she has continued to improve her strength to breathe on her own.
Ventilator- Being intubated means having it put in and extubated means having it taken out. This is where the vent is breathing for her when she was too tired. As she got stronger, she wouldn’t be “riding the vent” and taking her own breaths with it. Obviously the most invasive, this was the hardest to watch because of the uncomfortable ness down her throat. She would be on morphine for this, so seeing her sedating and not her little big eyed alert self, killed us. And then, not being able to hold her… well let’s not even go back to that week.
Cpap -the snorkel looking device, not as quite as bad a the ventilator but still continuous air pressure, making it not as easy as the nasal cannula
Nasal Cannula -little prongs into her nose that blow oxygen and flow. This has different levels of flow, so if she was on 3 liters, it was almost like a cpap but obviously not as tight on her nose. The amount of oxygen depending on how she was sating, if she needed more or not. 21% is room air. So during a little a or b spell, they might have to turn up the oxygen to stimulate her to breath. We are used to that.
Chapter 7 "Due Date Come & Gone"
I can see how the day your baby was supposed to do can be so hard. For me, I have been trying to look at it like, Hey, I got to spend 9 extra weeks with my sweet baby girl! And surprisingly, it was a special day. I told her again about my labor, how powerful her story will be, how big she has gotten…but now reality has overtaken me.
So now we are at 10 weeks. This has to be the most draining week of my life. I finally feel the weariness of not knowing why Parker isn’t getting stronger. It’s like one morning she is alert and breathing good, then by night she had 3 bad spells and everyone is trying to convince us she is going to be OK and this is common. Common?
Well it doesn’t seem common anymore. She is supposed to be home by her due date. They tell you when anyone asks, “They usually go home around their due date” And now they are starting to throw in there “ But every baby is different”. There has been babies coming and going out of here WEEKS before their due date. That seems common! And yes, I know we can’t compare, but seriously, we have no end in sight. They still are trying to say she has just severe apnea prematurity. But why is it so severe? Why does she need to get bagged? Why does she look at you one second so intently and then shut down the next?
She just seems so weak sometimes. We don’t want to go there but we are starting to wonder if she does have a serious problem. Some kind of disease or muscle weakness. And if that is the sovereign plan of the Lord, I just wish He would reveal it to us. I wish we could have some answers. Just tell us you have 3, 3 weeks, even 3 months here, but the she’ll be home and you’ll learn how work with her disease or syndrome.
Whatever it is, however long we have left in the walls of the NICU, we just want to know what to expect. Our heart is telling us she is going to be OK but it doesn’t make it any easier. We spent Thanksgiving and Christmas and now New Years away from her. With family, but without our family. There has been a constant ache in my heart since November 17, like something is missing. And even when I am with her, the ache still burrows deep within my bones. Because this isn’t how it’s supposed to be. It’s not how any first-time mom who has spent her entire childhood playing dolls, her later years babysitting every kid she could because she truly loved children, expected motherhood, let alone her motherhood, to be.
I keep thinking… I’ll take a colicky Parker that cried all day, a Parker who never who wanted to sleep at night, any kind of complaint mothers have happen to Parker, if it meant having her out of the NICU and at home, healthy.
I start to ponder again why this happened to us? Why can’t be getting better? Why did she have to come early in the first place?
……….And I remember that she is not ours, she is the Lords’. And He chose us to use us for His glory.
So I keep praying and then I think, well even if she has some kind of chronic or fatal disease, what says the Lord’s sovereign plan isn’t to cure it and have us to never know why she stayed in the NICU past her due date??? We may never know. And so we keep reading truth to ourselves through His Word feeding His power to our souls, like pain meds for our never subsiding, deep ache.
I’ll never forget this pain on week 10. It’s almost unbearable. It’s been building and building, like a splinter getting deeper and deeper, or a hang nail you pulled farther and farther down making in sting the more you pull but you just want it out! I have cried every time I walked into the NICU this week. I accept the pity looks from everyone instead of trying to be a light. I have called friend and broken down sharing the rawest part of me. And I have let my thoughts go everywhere to somehow blaming this on me.
But now it’s time to go and take my “pain meds” and get deep in His word again. And one day I’ll look back on this week 10 and remember His grace. One day.
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