Monday, July 30, 2012
10:39 AM | | Edit Post
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A Patent Ductus Arteriosus or other wise known as a PDA is a blood vessel that is present in all babies while still in the womb that does not close within the first few hours of life. Ductus arteriosus is a blood vessel that is open while the baby is in the womb, that allows blood to bypass the lungs and allows blood to flow from the pulmonary artery to the aorta. When the baby is born, and the umbilical cord is cut, the baby takes a few large breaths, which cause the lungs to supply the oxygen. The lungs expand, the blood vessels relax and receive more blood flow and the ductus arteriosus usually closes on its own. When the ductus arteriosus does not close on its own it is known as Patent (meaning open) Ductus Arteriosus or PDA. When the PDA does not close it allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain both the heart and the lungs.
On average PDA is a fairly common congenital heart defect that is diagnosed in the United States. Although the condition can happen in full term babies, its more common in premature infants. It is also twice as common in girls as it is in boys.
Here are some signs that a baby may have a PDA:
- Fast Breathing
- Working Hard to breathe
- Shortness of breathe
- Premature babies may need to be put on a ventilator, CPAP machine or nasal cannula due to a PDA
- Poor feeding
- Poor weight gain
- Tiring and wearing out easily
How a PDA can be diagnosed:
Typically a Doctor or nurse can hear a heart murmur that is the result of a baby's PDA. A heart murmur is an extra or unusual sound heard with the heartbeat. There can be several reasons and many causes for a baby or child to have a heart murmur that does not mean they have a PDA.
After a Doctor or nurse suspects a PDA they will then order a Echocardiography (heart echo) or an Electrocardiogram (EKG) to take a look at the baby's heart. The Echo is an ultra sound that can detect the size of the PDA and how the heart is responding to it. The Echo can also tell how the treatment is working. During an EKG the will place electrodes on the baby's chest (arms or legs) to measure heart activity. The EKG traces the activity of the heart onto paper for the doctor to see the rhythm, speed of the heart beat and whether the heart is enlarged.
Treatment for a PDA:
For a full term newborn with a PDA that is showing no signs or symptoms the Doctors will usually try and give it time to close on its own and monitor the PDA with doctor visits. However if a PDA is still present after the newborn stage, it generally will never close on its own.
For a premature baby a PDA can go two different routes, it can either be causing one or several of the symptoms we talked about earlier which would mean the baby would need surgery to close the PDA immediately. If the baby is showing minimal to no regression signs from the PDA then the doctors will take a wait and watch approach, where they will monitor the baby's symptoms and PDA very closely while still in the NICU. A PDA if given time, will usually close on its own in a premature baby but there are some instances where a baby will be discharged from the NICU with a PDA and have to follow up with their pediatrician as well as a pediatric cardiologist to monitor the PDA. In most cases if it does not close between 6 and 12 months then they will either do surgery or a procedure to close it.
The reason why they can not let a PDA go, usually past the age of 1, without it closing is because it puts a child at large risks for contracting an infection called infective endocarditis (IE) which is an infection of the inner lining of the heart chambers and valves.
3 ways to close a PDA:
- Sometimes, although it is happening less and less a doctor will treat the PDA with medicine in hopes that it will close sooner without surgery. Doctors will often use Ibuprofen or Indomethacin to treat premature babies to help close the PDA. However those medicines are showing to have many side effects that can effect the kidneys, so Doctor's have started to use this approach less and less. Also these medicines have to be administered within the first 7 days of life for them to be effective.
- If a premature baby is having distress with their lungs or heart due to the PDA then a doctor will have to perform a PDA ligation surgery. During a Ligation surgery the baby is put completely under and intubated. During the surgery a small incision between the ribs and the ductus arteriosus is tied and cut. This surgery can be preformed at any age.
- Lastly is the Cardiac Catheterization Procedure. If a full term newborn makes it to 6 to 12 months with its PDA then usually a doctor will opt to perform a Cardiac cathererzation procedure. The baby or child is sedated and catheters are placed into the blood vessels in the groin and fed up to the heart where they take pictures of the ductus arteriosus with dye. They will then use either a coil or flexible device within the ductus to "plug" it.
My daughter Nora was born at 25weeks 5 days and she was diagnosed at 1 week old with a PDA. We were lucky due to the fact that Nora has had minimal complications so far with her PDA. There were a few times in the NICU when Nora had to go up on her oxygen because they thought that her PDA was causing her heart to shunt ( oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery). Nora also had a hard time coming off her oxygen, but she was finally oxygen free 2 days before discharge! However she still needed the oxygen for feeds so we were sent home with oxygen. Doctors said this was most likely because of her Chronic lung disease but also because of her PDA still being open.
When Nora was first diagnosed with her PDA it was considered small and minimal and when she contracted an infection a few weeks later, her PDA went from small to large. The Doctors have kept a close eye on it, but she was discharged from the NICU at 39weeks 3 days and her PDA had not closed. It is now considered small-moderate in size. Nora also has high blood pressure, which her Pediatrician wants to make sure is not being caused by her PDA so we have been referred to a Cardiologist. Nora is now almost 6 months actual and 2.5months adjusted and we will be seeing a Pediatric Cardiologist in two weeks, 6 days after her 6month birthday. Judging from everything I have read and heard it sounds like Nora's PDA is past the point where it will most likely close on its own. Her Cardiologist could still give it a bit more time, but we will have to wait and see what he decides. I am still not sure because of her being a preemie and still being so little, whether she will have the ligation surgery or she will have the catheterization procedure. Although a PDA can be very serious, it is also very common in premature babies and usually has no long term effects if treated appropriately.
To read more about Nora's story or to follow her PDA outcome you can go to my blog at:
In researching for this post I have used the following articles:
Friday, July 27, 2012
12:13 PM | | Edit Post
About halfway through our NICU stay both twins were diagnosed with reflux. Blake’s was solved mostly by keeping him up right after feedings, and pacing him. The closer we got to their due date the better things got for Blake. This was not the case for Addison.
They first tried her on medicine, Prevacid, but that didn’t work. Next they tried adjusting her feedings so that they would run slower over a period of a few hours. That didn’t work, so they tried pushing her feeding tube down further, past her sphincter muscle and in to her intestine, bypassing the stomach all together and in hopes of stopping the refluxing. She was still having Brady spells and refluxing but not as bad or as frequent. Her case was so severe that they did not even want to attempt oral feedings.
At this point it was decided that she would be transferred to another NICU where there was a GI doctor on staff and would have her evaluated for a G-tube and Nissin Fundoplication. The Nissin Fundoplication is surgical procedure to treat reflux. During the procedure the surgeon would wrap the top part of the stomach around the bottom of they esophagus and stitch it into place, which reinforces the closing function of the sphincter muscle, thus preventing reflux.
We were very hesitant to put our baby under the knife for any reason, and while we waited for her transfer I started researching the procedure and looking for other’s experiences. There were a lot of mixed reviews about the procedure which only left me more confused, nervous and undecided.
When Addison was finally transferred to the new hospital, we had to wait a few days to meet with the surgeon and come up with a plan. First thing he wanted to try was moving her feeding tube back to her stomach and see how she responded, it was clear she still wasn’t tolerating it, even though she was still on reflux medicine. He also wanted to run a pH Probe to just how much reflux she was having and how often, but to do that they would have to stop her medicines and risk an increase in the reflux and potential aspiration. The surgeon was very hesitant to do the pH Probe due to the overwhelming volume she was already refluxing with meds, and cautioned us and we were left to make the decision. Seeing her in pain and choking on formula over and over and needing to be suctioned several times a day… we knew our only option was the surgery.
On 6/13/11, Addison underwent surgery and they were able to successfully perform the Nissin Fundo and place her G-tube. To be honest things were very rough for a few weeks after surgery, and again we questioned why we did this to our little girl. The surgery itself was successful but afterwards she stayed intubated for almost two weeks and ended up with yet another staff infection, these were things we were prepared for but not expecting. The Neo who sent her to surgery reminded us of where she started (she had always been sick from a respitory stand point) and told us point blank to expect a decent intubated period post op. The reflux certainly didn’t help her already fragile airway.
After those first two weeks post op, things did get MUCH better. I spent my days learning how to care for her G-tube and how to feed her. All while managing her twin brother who was already home and waiting for his sister to join us. When she came home things went well, but I must admit, I had a very strong love/hate relationship with her G-tube initially (and some days still do). But as the weeks went on and she got bigger and stronger and healthy I knew we made the right call for her. We did experience retching (where she would gag a little but couldn’t bring whatever was causing it aka reflux, up), but that too got better over time and we learned some things triggered it.
She is now almost 18 months old and is still primarily G-tube fed, but otherwise doing well. She is no longer in pain from her reflux and developmental is not too far behind. Had we not done the surgery it’s hard to say how much longer they would have kept her in the hospital waiting for her to out grow the reflux.
Tuesday, July 24, 2012
9:08 PM | | Edit Post
For Part 1 of this series, click here
HOW IS GER DIAGNOSED?
HOW IS GER DIAGNOSED?
If your infant or child has any of the above symptoms and you are concerned that she may have reflux, talk with your pediatrician about having her evaluated. GER may be diagnosed by a single office visit, or a referral may be needed to a pediatric gastroenterologist for further evaluation. Your doctor or specialist will review your child's symptoms, determine if her weight gain is appropriate, and possibly order special tests. These tests may include an upper gastro-intestinal X-ray (UGI), a milk scan, a 24-hour pH probe, or an endoscopy.
My son was sent back to the NICU (ugh!) and it was there that they started to run some tests on him. He was seen by the Speech Therapist/ Feeding Specialist to see if it was his suck, swallow, and breathe. It wasn’t. I told them that he was obviously uncomfortable and I was convinced it was reflux. They don’t like to put babies on reflux meds but I really pushed them to figure out what was going on. He went in for an Upper GI (UGI) and they found that within a mili-second of him swallowing, the food came back up and down over 7 times. Thankfully, he wasn’t aspirating (where the liquid food comes back up and goes into the lungs). So it was then we got our diagnosis of “severe reflux”.
Treatment of GER varies from simply thickening formula, to medication, to surgery. Your doctor may begin with thickening the formula and suggesting that your baby be in an upright position most of the day, especially after eating. Try to hold your baby without putting pressure on her abdomen. Burp your baby frequently (every 1/2 to 1 ounce) and encourage her to suck on a pacifier between feedings. This helps to keep the esophagus in motion, pushing anything in the esophagus back into the stomach.
If an infant is in pain, has slowed or stopped eating, or has apnea or bradycardia that is caused from reflux, more aggressive management needs to be done. Medications such as Zantac or Tagamet or Prilosec that decrease or block the production of acid, and/or medications such as Propulsid or Reglan that improve digestion, may be prescribed. These medications are often used in combination with one another.
Most children will out grow GER by one year of age. As children grow, their esophagus becomes longer and the stomach naturally begins to wrap around the muscle at the top of the stomach.
My son had been put on Allimentum formula prior to his initial discharge because of suspected Milk Protein Intolerance. This seemed to help his reflux as well because often times reflux and MPI go hand in hand. I stopped pumping, which for preemie moms and preemie moms with reflux babies can be an extremely difficult decision. He was also already on a low dose of Zantac. With the new diagnosis, we were to thicken his formula with 1tsp of rice or oat cereal (alternating) per ounce of formula. He was also put on Prilosec and Maalox (as needed). He was to be kept upright most of the day. We got a GI specialist on our team and we checked in with him monthly and adjusted his medications as he gained weight. He was very important because a GI specialist will dose your baby at the highest dose as opposed to a Pediatrician who tends to be more reserved.
I wish I could say that it fixed everything immediately. It didn’t. We played with his medications and the thickened feeds to find the right balance. He lived in a Moby Wrap or his Fisher Price Rock n Play (please get one if your child has reflux, you will thank me!) or his swing or his car seat! It took months for the pain to stop when he ate but I can say that by the time he turned 1 adjusted, he was off of all of his medications and we hadn’t been thickening his food for months. My son’s reflux was one of the most difficult things that I have ever endured and it wasn’t even me with the pai
I mentioned that babies spit up. They do spit up and if you have a happy spitter then there isn’t a real reason to put them on medication for reflux. I would still talk to the pediatrician about it to let them know what is going on and to check weight gain. The medication does not STOP the reflux, it only makes it more comfortable for them.
The other thing I wanted to call attention to is something called silent reflux. It can be scary to not know that your child is refluxing. It is harder to detect because they aren’t spitting up. But here are the symptoms for silent reflux:
• poor weight gain or rapid weight gain
• gulping with a painful look on the face
• sour breath, wet sounding burps
• persistent or chronic cough
• frequent hiccups
• sudden burst of painful crying
• painful wakeups from sleep or poor sleeping habits
• poor feeding habits, possible feeding aversions
• neck or back arching during or after feeding
• excessive fussiness, crying or colic
• demands to be carried constantly
• red or salmon colored throat
• blood in the stool or spit up
These last two signs are possible indicators of Barett's Esophagus. The risk of Barett's Esophagus is slightly higher with silent reflux because there is generally more damage to the throat with silent reflux in infants, although it is still a fairly low risk.
Having a child with reflux can trigger many emotions. It is normal to feel anger, frustration, and sadness. Sometimes it helps to talk with those who can empathize with you and understand your feelings and concerns, such as other parents of children with reflux. You'll need support to make it through these difficult days. A national parent support group called PAGER (Pediatric Adolescent Gastroesophageal Reflux Association, Inc.) can help you find any further assistance you might need. Their website address is http://www.reflux.org or they are located at PO Box 1153, Germantown, MD 20875-1153, (301)601-9541.
E-mail one of the Resource Blog creators and they can get you in touch with me!
(Information taken from: http://www.prematurity.org/baby/reflux-maroney.html and http://www.pollywogbaby.com/refluxandcolic/silent-reflux-infant.html )
Monday, July 23, 2012
12:01 PM | | Edit Post
Each week the Preemie Resource Blog will look at one issue that effects preemies and their parents.This week we will discuss reflux, one of the most common issues among premature babies. Read Stacy's story about her son's struggle with reflux.
Reflux is one of the most common but least diagnosed issues with preemies. I’ve found that many doctors do not want to start a medication regimen for preemies in the NICU. What that means is that many babies go home and continue to suffer out loud or in silence.
If you have ever had reflux or heartburn, you can imagine what a little baby is feeling every time they eat. I remember crying 8-10 times a day- every time my son ate. It was heartbreaking to have to feed him when he was in so much pain. Then the spitting up got worse. I was told; “babies spit up.” This was not a baby just “spitting up”.
WHAT IS GER?
“GER is Gastroesophageal Reflux. Gastro means stomach, and esophageal refers to the esophagus, the tube inside the throat that connects the mouth to the stomach. A muscle at the top of the stomach (also called the Lower Esophageal Sphincter or LES) naturally opens and closes to allow swallowing, burping, and vomiting. Refluxing occurs when the stomach acid and partially digested food flow back up through the LES into the esophagus. All children and adults will naturally reflux throughout the day, especially after eating. However, if the muscle opens too frequently and refluxing occurs too often, complications can develop.
Premature infants have an increased risk of developing GER. There are several medical conditions that can cause reflux, but in preterm infants, the most common causes are immature muscles and abnormal breathing from chronic lung disease. If the lower esophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the esophagus. When an infant or child breathes abnormally because of chronic lung disease, the muscles used for breathing work harder. As these muscles work hard to breathe, they can pull on the muscles near the top of the stomach, stretching the sphincter and causing it to remain open.
When the stomach contents flow inappropriately up into the esophagus they bring acid from the stomach. As the acid irritates the tissue inside the esophagus, it becomes inflamed and reddened. This condition is called esophagitis. Esophagitis is painful, similar to the pain of heartburn. This is why an infant will refuse to eat or stop eating - she is protecting herself from the pain of the acid touching the damaged tissue. If the reflux is severe, the stomach contents may go high enough into the esophagus to be aspirated or spilled into the lungs causing choking, color changes, frequent respiratory infections, apnea (breathing slows or stops) and/or bradycardia (slowed heart rate).”
As I said, “babies spit up” but reflux is much more than that. Here are some common signs and symptoms:
• spitting up frequently (more than 2 times a day);
• fussy often throughout the day (specifically before, during or after eating)
• refusing to eat,
• fighting eating;
• taking only small amounts of formula or food, regardless of the amount of time since the last feeding;
• back arching during feedings;
• choking or apnea during or after eating;
• skin color turns pale or grayish during or after eating;
• poor weight gain; and/or frequent respiratory infections.
Many parents say, "She acts like it hurts to eat" or "It just seems like she is in pain."
My son would spit up every time he ate, even if he was held upright for an hour after he ate. He refused to eat and would only eat a small amount every 2 hours. He would arch his back and cry and scream. It broke my heart because he was a happy baby when he wasn’t eating or refluxing. Although his weight gain was slow, he was always gaining so the doctors weren’t concerned. But mother’s intuition told me that it was more than just spitting up. Eventually, my son spit up so badly that he stopped breathing and my husband and I had to bulb syringe him until color came back to his face. It was after that point that we finally got our diagnosis.
For more on reflux--how is it diagnosed, treated, and other how helpful information--click here
Friday, July 20, 2012
7:19 PM | | Edit Post
After two years of infertility, multiple methods of advanced reproductive technology (ART), my fourth medicated cycle which was a converted one from IUI to IVF was successful. At my six week ultrasound, I found out I was carrying twins!
My pregnancy had some concerns. At seven weeks, they were concerned with Baby A’s yolk sac and its viability. However, a viability ultrasound at eight weeks showed this to be a non-issue. Then, at nine weeks, I started bleeding. I was diagnosed with a subplacental tear / subchorionic hematoma. I continued to bleed for eight weeks and it was a long, stressful time during my pregnancy. Finally, at week 17, it stopped and I breathed a sigh of relief. From that point on I was glowing! I felt like a million bucks, everything looked excellent with the babies on my ultrasounds, and I was so excited to be pregnant and enjoying my pregnancy to the fullest.
On Thursday, January 19, 2012, I was lying in bed watching the news and I thought I peed my pants. I literally got out of bed laughing because I couldn’t believe I was doing that kind of stuff at only 25 weeks. I took my pants off and noticed it was more than just a dribble – and then I went into the bathroom and I was gushing fluid. I knew right then and there that this wasn’t urine and that my water had broke.
I called down to my husband and told him we had to go to the hospital. He came running upstairs and couldn’t believe his eyes. I was hysterical but he grabbed me my phone so I could call the OB office and they told me to get to the hospital as soon as possible. My husband was literally frozen with fear – he was walking in circles and trying to secure the house and the dogs and I just lost it, grabbed my keys, and got into my car with him chasing behind me. I couldn’t wait one more second and just HAD to get to the hospital.
So, yes, I drove myself the 37 miles to our regional hospital all while on the phone with my mom, grandmother, and best friend (and fellow preemie mom) Julie. I made it in 30 minutes. My mom met me there and my husband soon followed. When I pulled into the hospital, I saw what I thought was the valet guy and literally hopped out of my car and handed him my keys. I didn’t care whether he was actually a valet or if I just gave my new car to some random guy in a red coat. I walked as fast as I could with a towel between my legs and made it to the birthing center where my mom was waiting. Note: it was a valet and I still have my car.
They started me on monitors for both babies heartbeats and contractions and they did a test that confirmed it was, in fact, amniotic fluid. I had suffered from preterm premature rupture of membrane (pPROM). The OB came in and did an ultrasound which did little more than confirm both babies were still breech and she did a physical exam and found that my cervix was still closed. I was apparently contracting, but didn’t feel them at all – I was 3-4 minutes apart when I came in! I was immediately given a steroid shot (the first in a two shot series) and they started me on magnesium sulfate to stop the labor. A neonatologist came in to talk with us and we were essentially told that at 25w4d gestation, the babies had a 50/50 chance of survival. We were heartbroken. But, the team of doctors (OBs, MFMs, etc…) were going to work as hard as possible to keep me pregnant for as long as they could.
I was then moved to a room in the birthing unit where I was monitored very closely. I was given an ultrasound Friday morning that confirmed it was Baby Girl’s sac that had broken and it was a full rupture. Her fluid level was considered “low”, but she wasn’t showing any signs of distress. In addition to the magnesium, I was given two antibiotics to ward off infection and because I tested positive for group B strep earlier in my pregnancy. That first night / morning is a blur to me – I wasn’t allow to sit up at all, had to urinate in a bed pan, and was literally left to lie in bed and do nothing. I was given three goals to try and make and they were:
- Goal #1: second steroid shot (Saturday at 1:30am)
- Goal #2: steroid series considered complete (Sunday at 1:30am)
- Goal #3: 26 weeks gestation (Monday)
I was moved to a new room in the birthing unit on Friday and I stayed there until Sunday morning. Again, I was closely monitored and completed the magnesium and steroid series successfully where I stopped contractions and it looked like labor was held at bay for the time being.
Sunday morning I was stable enough that they moved me to the maternity special care unit where I would stay until I delivered the babies. We didn’t know if that would be a few days or a few weeks, but we were hoping for the latter. I was allowed to finally get up, only to use the bathroom, and I could shower for five minutes a day. It was a lot of freedom compared to how I was monitored at the birthing unit. So many friends and family visited with me throughout the days I was in the hospital and on Monday night my mom came to watch the Bachelor with me…the last show I would watch before becoming a mom.
Before my mom left the hospital for the night, at around 10:00pm, the amniotic fluid that was leaking turned pink. The nurse came in and checked the babies and they sounded good and they hooked me up to the TOCO to check for contractions and there was nothing. The nurse spoke with my OB and they said that it can happen where the fluid changes colors and it was considered “normal”. At around 2:30am, I was having these lower abdominal pains – almost like I needed to have a bowel movement. I got up to try and go a few times but nothing happened. I finally called in the nurse and she checked the babies and both sounded good. She put me on the TOCO and it wasn’t registering anything. Then I was getting those lower abdominal pains more severely and I finally asked her to move the TOCO lower. Well, I was registering large, sustained contractions and so she called my OB once again. The OB came down to my room prior to her next c-section and did a “digital exam” to see if I was dilated and guess what? She looked up at me and said, “I can say I feel two little feet”. I about died. I was approximately 6cm dilated and Baby Girl had essentially kicked her feet through my cervix!
It was then like a scene from a movie – while they were rounding people into my room, I called my husband and we both knew he’d never make it. They made one attempt at an IV in my room and my OB finally said something along the lines of “we don’t have time for this – she’s got to go NOW”. I was then flying through the hallways – I was so scared that I was physically trembling. I went right into the OR and there wasn’t even time to give me a spinal so I was put under general anesthesia and that’s the last I remember before waking up in excruciating pain in recovery.
On Tuesday, January 24, 2012 at 3:19am I gave birth to two beautiful preemies:
- Colton Christopher weighed 1lb, 13 oz and was 13 inches long
- Keltie Grace weighed 1lb, 9oz and was 13 inches long
Both struggled mostly with breathing issues throughout their NICU stay. Other challenges presented themselves such as a pneumothorax (Keltie), nephrocalcinosis and hypertension (Keltie), bilateral hernia repairs (Keltie), severe reflux (Colton), aspiration of thin liquids (Colton), and retinopathy of prematurity or ROP (both babies). Keltie was discharged from the NICU at 100 days. Colton remained there an additional six weeks because of his spells which were related to his severe reflux – he was discharged at 142 days.
So – that is the birth story of our twins…or, as we refer to it, Keltie deciding to break her sac and then sticking her feet where they don’t belong. I can’t even begin to explain the amount of love I feel for these two peanuts. It actually overwhelms me at some points. They’re absolutely beautiful and fought long and hard to get to where they are today. I’ve learned to appreciate the small things – things that “normal” parents likely take for granted such as seeing their faces for the first time, touching them for the first time, their first poop, their first 1ml of breast milk feeding, overcoming breathing issues, etc… We are lucky to have them home with us – it’s wonderful to have our family together under one roof. More information about their NICU experience can be found at: http://project26weekpreemies.wordpress.com.
7:07 PM | | Edit Post
If I could write a book about my life over the last year, I’d have to title it “Barefoot and Pregnant: a bed rest story”. Though the title is somewhat tongue-in-cheek to match my distinct sense of humor, there is nothing funny about my story. And for much of the last year, it has been really hard to be thankful. And last year at this time, I wasn’t.
For those of you who don’t know me, I’ll start my story a year and a half ago as a bright-eyed Pollyanna and a newlywed. My husband and I always wanted to have kids and planned to start building our family a year after our wedding. So when the time came to start trying, we read the pregnancy books, researched all the cool baby gear, and prayed that we’d be blessed with a healthy little baby 9 months later.
But that isn’t what happened.
After about 4 months battling extreme morning sickness and fatigue, we lost our baby girl, Frances. I was at my doctor appointment before my planned trip to visit my mother for her end-of-October birthday the day we discovered I’d miscarried. My husband and I were devastated! I took some time off of work, and we both cried a lot. I was very angry at God for taking my sweet baby away from me. So I was decidedly unthankful last Thanksgiving.
Two months later, I discovered God was giving us a second chance. I was pregnant again! My husband and I were cautiously excited. We’d planned to try for another baby, but it happened so soon. My body just wasn’t ready to support another life. Two weeks after my positive test, the trouble began. I was put on strict bed rest to prevent not only my baby’s death but my own as well. As my first trimester came to an end, I was rushed to the hospital because I was starting labor due to a placental abruption. My doctor told me I wouldn’t be pregnant in the morning. But my son and I are fighters, and we survived. In all, I spent 6 terrifying months lying in bed, including 6 long weeks in a hospital bed praying the baby would just “stay in one more day”. I was angry at God for putting me through such a terrifying ordeal and angry at all the people who just didn’t understand what I was going through.
My beautiful son, Anthony was born 9 weeks premature, weighing just 3 lbs. 12 oz. He spent 6 weeks in the NICU and came home on oxygen and an apnea monitor, but he was finally able to eat and breathe on his own by then. At 4 months of age, he is now thriving and weighs more than 12 lbs!
While I still have a tough time dealing with the horrors of the last year, I’ve come to realize that gratitude is a process. I am still angry at God a lot of days. I feel like my babies and I are being punished, though I don’t know what for. But in all that anger, I’m thankful, too. As my confirmation students can tell you, I believe most bad things happen so we can appreciate the good. So without much further ado, here is what I’m thankful for this Thanksgiving:
I am thankful for my husband who selflessly put his life on hold to care for me and our son.
I am thankful for friends and family who shared stories of their own angel babies, too beautiful for earth.
Who brought us pre-made dinners, cleaned our house, or even just came for an afternoon visit. Who prayed every night or even just one time that we would get through our crisis and that everything will be ok.
I am thankful for doctors and nurses who took the time to ensure my needs were met, not just medical needs, but more personal needs as well, sharing stories about their lives, the doctor who brought his terrier in to visit me, and the nurse who searched the whole hospital to find me the Garden Salsa Sun Chips I was craving that day.
I am thankful for the women on my message boards, who shared their strengths and even their weaknesses and made the time a lot more bearable.
And most of all, I’m thankful for my son, Anthony. Every morning, his bright smile gives me a reason to get through the day. His cries remind me that someone needs me. And his sleepy head on my shoulder tells me I’ve done my job of mothering well.
6:52 PM | | Edit Post
|Tony, one year.|
My birth story is a sad and scary one. I had no trouble getting pregnant, both times conceiving in less than 2 months. But keeping a fetus alive, proved to be a nearly impossible task for me. I had horrible morning sickness and fatigue with my daughter. They overshadowed the joy I felt expecting a new baby and left me feeling extremely guilty for not enjoying her more during her albeit brief life when I delivered her, already deceased, at 18 weeks gestation. I’ve never known such darkness in my life. Nothing brought me comfort.
Six weeks after delivering her, my second round of test results were back with an almost certain cause for the late miscarriage, a septate uterus, which had apparently corrected itself according to my MRI. So my perinatologist and OB/GYN gave me the all-clear to attempt another pregnancy and assured me I would not experience the same issues or be put on bed rest. (I had asked about the bed rest because a close friend had spent several months bed ridden with her first child.) I was desperate to put the bad feelings behind me.
We started trying that night. I went back to work from maternity leave the following day.
Nineteen days later, exactly two months after learning my daughter was no longer alive inside me, I tested positive for a second pregnancy. In sharp contrast to my first pregnancy, I was terrified rather than elated. Were we ready? How could I love another baby as much as I loved my daughter? What if this one died too? You can’t replace a baby.
But I was happy to have a second chance. This time, I’d be a better mom.
Two weeks later, I hemorrhaged.
The on-call doctor didn’t seem to care that I was bleeding and pregnant. “This happens sometimes. Most of the time it is implantation bleeding and does not cause a problem. But if it is a miscarriage, there is nothing we can do about it,” she told me matter-of-factly, as if she were talking about a lost book or something. I left her office feeling helpless. But she had prescribed pelvic rest, and that I could control. So I did my best to take it easy and wait for the bleeding to stop.
When I followed up with my OB at my dating ultrasound the following week, she reiterated the on-call doctor’s diagnosis and recommendation and said to call if it happened again. It did the next day-- a week after the first time-- and again a few days later. No doctor seemed to care. My perinatologist agreed with both OBs at our scheduled meeting a week later, after all, I was only 7 weeks pregnant and miscarriages are common around that time. Three days later, it was like someone had turned the faucet on…I bled for an hour, saturating pad after pad. The phone nurse seemed very nonchalant about the bleeding when I called around 10:30 PM and asked me to make an ultrasound appointment in the morning. When I arrived, they rushed me to the perinatologist’s office for the ultrasound, after which I was given the bad news: I had a subchorianic hemmhorage, and I would be on strict bed rest from the time I arrived home until it healed, which in most cases takes about 1-2 months time.
It didn’t heal.
At 13 weeks, I had been hemorrhaging less often than in my early weeks of bed rest, so I was allowed to modify my bed rest to take the stairs a couple times per day and take a reasonable shower. (On strict bed rest, I got 5 minutes, which isn’t really long enough to do anything other than wash my long hair.) That Wednesday, I had the worst pain yet, coming and going and squeezing my torso with immense strength. All I could do was scream from the pain. I called the OB because surely something was different. My husband rushed me to the clinic for an emergency ultrasound. The technician was doing regular clinic hours that day, thank goodness, but she was my high risk ultrasound technician usually. She was surprised to see me and even more surprised by the shrieking I was doing. (They wouldn’t even let me sit in the lobby because I was scaring the other patients!) She had a nurse run to get the on-call doctor shortly after beginning the exam.
This could not be good.
The doctor did a quick pelvic exam upon arrival to the small, dim room. All the healthcare professionals stepped out of the room together afterward. My husband, our unborn baby, and I were alone in the very scary ultrasound room—the same room that had brought us happiness just seven weeks earlier at our dating ultrasound. When they returned, the OB said the words etched in my memory, “Your placenta has abrupted. Your uterus is as hard as a rock. You will not be pregnant by the morning. I’m scheduling a D&C for tomorrow.”
“Like hell you are!” I screamed, “His heartbeat is 156! And I’m far enough I can labor through it, so that is what I’m going to do. This is NOT my first miscarriage!”
“If we allow that, you will most likely bleed to death.”
“Well then, I guess I’m going to bleed to death because you’re not taking my baby!”
“We’re not going to let that happen.” And the doctor excused himself to give us some privacy to deal with the emotions. At that moment, I stopped caring about the pain. A strange calm washed over me as I resigned to bring my baby to life or die trying. We called our pastor. And they admitted me to the hospital attached to the clinic.
A few hours later, full of IVs and resignation, I was approached by the same doctor. He delivered the best news of the day, “There’s still hope.” My contractions had stopped, the bleeding had eased, and the baby still had a strong heartbeat. When pastor arrived, we shared the good news and prayed. I was released the following day, prescribed strict bed rest until delivery.
As the weeks progressed, the hemorrhages happened less frequently but more intensely. I would awaken in a pool of my own blood some nights, so I began sleeping on a towel. We rushed to the ER several times as I cramped violently and passed blood clots the size of my fist. When this would happen, I typically vomited, became light-headed, and got to the floor as quickly as possible to avoid the dangerous fall that would come if I lost consciousness. I cannot describe the terror I felt crawling back to the toilet, plastic cooking spoon in hand (don’t worry, this was its final purpose in our home) to scoop the clot out of the toilet and check for gray fetal tissue. No one can ever get used to that.
But things were looking up. My perinatologist felt that by 19 weeks, I did not need to be seen every week anymore. I dropped from weekly ultrasounds to every 3 weeks because baby was growing and developing nicely. When Viability Day came at 24 weeks, we celebrated with sparkling grape juice.
The morning of my 25 week appointment, I awoke in the early morning as a large clot punched through my cervix. “I’ll be admitted today,” I told my husband as I returned to bed. So he made arrangements to take me to my afternoon ultrasound. We were in the perinatologist’s office all of a minute after the ultrasound. We had discussed this possibility before, so all he had to do was reiterate what was happening.
My hospital room was clinical and lonely, but it was a single room, something I’m eternally grateful for. I know that I could not have handled a happy nursing mother bedding next to me; I could barely handle hearing the healthy babies cry in the hallway. We had a lovely nurse at check-in who made a deal with me, “As long as you stay pregnant, you get cheesecake.” I was once again hooked up to IVs and monitors, and I received a round of steroid shots preparing for imminent delivery in the next few days.
Three weeks later, I was still pregnant and still in my hospital room, the closest room to the OR. By now, I had decorated and befriended many members of the hospital staff. A “chain of love” in green, cream, and pink (the only colors available on the craft cart for some reason) festooned my walls, one link per day of bed rest so far and one link for each day I hoped to stay pregnant. I looked forward to my hot lunches, since I’d spent most of the last few months eating peanut butter and jelly sandwiches and cereal. Don’t get me wrong, I had plenty of days I was angry and did not want to talk to the staff or visitors, but I did my best to stay positive. The pet therapy program helped a lot. I would get random visits from various dogs during my stay. But I kept holding out to meet the pony—that’s right, I said pony!
|"...that's right, I said a pony!"|
Now at 28 weeks, I’d been complaining that the blood didn’t seem like blood anymore, too clear and too constantly gushy. So my nurse did a test for my water being broken. (I’d battled low fluid for a long time, so no one was concerned before this.) Barely a minute into the test, which is supposed to take several, she confirmed that I was leaking amniotic fluid pretty heavily. So I got more IVs, more steroids, and more scared.
Again, I avoided having the baby when everyone thought I would. After a week, my perinatologist let me have the IV ports out again until necessary and gave me the best news I’d had in a while, “If you are still pregnant a week after your water breaks without infection, there is a good chance you can make it to 34 weeks. That is as far as I will let you go, though because at that point the potential detriment will outweigh the potential good of staying pregnant.” So we continued.
Three weeks later, my husband brought me Olive Garden takeout to celebrate our second anniversary. I turned down my hospital dinner, including the cheesecake that was to be my dessert. That night, I went to sleep with some nasty indigestion and a loving husband kissing me goodnight and heading home.
In the morning, I still had the indigestion when I woke up, so I waddled to the bathroom. That brought me no relief, so I called the nurse. It was early, about 2 hours before shift change, so she got there fairly quickly. “Let’s put you on the monitor,” she suggested. After about an hour, she came back to check on me and said she wasn’t concerned because she didn’t see any contractions. But I felt worse, so I asked if the on-call OB could stop by. He had just finished a delivery, so he came in a little while later. I stayed on the monitor while I waited.
He had come to be one of my favorite on-calls because on weekends, he would sometimes bring in his terrier, a spunky little pooch with a skull-and-cross-bones scarf. I think the dog was as excited to see me as I was him. He did not have his dog with him that day, though; it was a Tuesday. He put his hand on my belly and watched the monitor. Soon I was crying from the pain; then it eased. Again crying, then eased. “You are having contractions,” he said, “I don’t know why they are not registering on the monitor.”
“Am I in labor, then?” I asked. I had been texting my husband since I woke with pain, and I needed to text him soon if I was in labor because otherwise he would leave for work.
“It’s almost shift change. I’ll let the next on-call check for labor. He should be here in a few minutes.”
I texted my husband who had already taken off work because he was so concerned by my messages. He was there before the next OB arrived. Sure enough, when the next OB did a pelvic exam, I was 4 cm dilated and 90% effaced. “You’re in labor,” he said.
“Give me some drugs,” I said, “I’m having a cesarean because baby is breech and want to be in as little pain as possible.”
He made me wait while he got an ultrasound machine to double-check baby’s position. Yes, baby was still frank breech, as if to stop my body’s numerous attempts to end the pregnancy early.
Soon, I was shaved, prepped with IV ports, and briefed on what would happen in surgery. My OB met us in the OR. I was grateful for the release from my bed prison, despite my concerns for my baby’s health and well-being as a 31 week preemie. The surgery went quickly. My husband almost didn’t make it into the room in time for the actual birth.
My son, Tony’s cries were the most beautiful sound I’d ever heard! Many preemies don’t cry right away because their lungs aren’t fully developed, so I was a little surprised and extremely grateful he came out crying. His weren’t fully developed either, but the steroid shots helped to mature them as much as possible. “Tony, be brave! I need you to be brave! I love you!” I called to him. He was attended to by a team of neonatal specialists who showed him to me momentarily before whisking him away to the NICU while my doctors stitched me up and sent me to post-op for a few hours.
|Tony at birth with his new friend, Pooh.|
Waiting to see him was hard. My husband followed him to the NICU and took some pictures until the NICU staff asked him to leave the room while they intubated the baby. He came back to visit me and show me pictures, answering all my questions about how he looked and smelled as well as what was happening down the hall in the NICU. Tony weighted a whopping 3 lbs. 11 oz. and was just shy of 16 inches long. I did not get to visit him for an eternity—ok, a couple of hours of post-op—and I when I did, I was wheeled to the NICU still in my bed as the epidural wore off. He was beautiful! And he knew my touch.
I could only stay with him for a short time because he needed his sleep, and I needed to pump. While I was in between visits with Anthony, the pony came for pet therapy, as if she’d waited to meet me, so she could celebrate with me.
Having a baby in the NICU was tough. After 6 months of bed rest, my muscles had atrophied. Any mother who’s had a cesarean can attest that the first few days are full of intense pain at the surgery site, but I could barely walk 100 feet before the surgery. My nurses encouraged me to walk my wheelchair down to the NICU to regain strength. I would walk as far as I could and get a push the rest of the way.
I held Tony for the first time on his third day of life. He was only on the ventilator for 2 days, which was the main reason we were not able to hold him the first 2 days. Holding him was incredible! But I cramped up really badly from the oxytocin release and had to stop after only about 15 minutes. My husband held him that night.
Over the next six weeks, we had our share of ups and downs but mostly positives. We tried breastfeeding around two weeks old (33 weeks gestational age), which was a mix of emotions. Tony knew exactly where his mouth should go, I’ll always remember the sweet look on his face as he looked up at me, mouth agape, as if to say, “I’ve got my mouth in the right spot; where’s my milk?” Alas, he just could not get enough suction. We had some help from nurses and lactation consultants, but he just did not get the hang of it. After about 2 weeks of trying, we decided to try a bottle so that we could take him home when he got the hang of eating. He did much better with the synthetic nipple, though he was able to suckle my breast for a few minutes before we left the NICU. He did not successfully nurse without a nipple shield until he was 3.5 months old (1.5 months adjusted age).
He was put on CPAP after the ventilator for a few days before going to a nasal cannula that stayed until he was 6 months old (4 months adjusted age). He hated the tubes attached to his face and would try to pull them off. He did this until the cannula came off. I hated having to put it on him.
He spent about two days under the phototherapy lights because his bilirubin levels were too high. He had an orangey color. And he wore a little eye mask that made him look like a movie star tanning while he was under the light. He was in an isolette at the time to reduce the amount of stimuli around him to help him sleep.
He had lots of tests to make sure he was healthy. He had ultrasounds on his head to check for bleeding; thank God there was none! Several times, the respiratory therapists tried to take him off oxygen, but his blood oxygen levels always dropped. And he had a chest ultrasound because of a heart murmur. His hearing test came back normal, and he passed his car seat test.
Near the end of his NICU stay, he had an eye exam, which was horrible! I was asked to leave the room while the ophthalmologist did the exam because he cried so much. When I came back, Tony was limp and unresponsive. He had had his circumcision and the chest ultrasound that day as well. The neonatal team tried to assure me he was just tired, but he was not acting like he normally did, even tired. This is probably my worst memory of the NICU. I picked him up and held him while the nurse jabbered at me about who knows what. I was angry that he was so unresponsive—what had they done to my sweet little boy?! “Please leave us,” I implored the nurse. I held him close and kissed him. When the doctors came in, I was still pretty upset. They had scheduled too much for my little guy. And he would not eat, which was our last big hurdle before he came home. I did not want this to set him back. His feeding tube had been removed, and now they were threatening to replace it for a few days. I was devastated and angry, so I told the doctors why I was upset. They said that they’d do what they could to make sure Tony could come home as soon as possible. And the home health nurse brought us our oxygen concentrator and taught us how to use it and our apnea monitor.
The next day, we were able to room in with Tony. It was a long night, since the apnea monitor we had received turned out to be faulty and false-alarmed numerous times throughout the night. Within a few hours, we had to disconnect it and use a hospital monitor because the alarms were so frequent. My husband and I were so scared every time. But otherwise, the room-in went well, and we received a new monitor the next morning.
We stayed until early afternoon that day, a Saturday in mid-August. We filled out our paperwork, said farewell to the nurses, doctor, and other staff, and packed up all the stuff we got to take home. It was emotional taking him home for the first time. We were happy to have him close to us but very scared to bring him home in less than perfect health. The first night, no one really slept in our house. We were too nervous, and Tony was in the newborn phase, waking to eat every few hours. But we eventually found our groove and learned how to care for him calmly and rationally.
|The chain of love around Tony's room.|
As a one year old, he is still behind on some things developmentally, but he is happy and well-adjusted. He pulls himself to standing, communicates his needs and wants, and loves to watch the monkeys at the zoo. He even blows raspberries on my legs, like I do to his belly. This sends us both into fits of laughter. And I don’t know that I would change our story as awful as the memories are because I know I’d appreciate him very differently without all the difficulty in getting him here. Our chain of love now bedecks his bedroom, a daily reminder of how far we’ve come.
Wednesday, July 4, 2012
7:37 PM | | Edit Post
Birth Story One - Norah
My first daughter, Norah, was born at 34w2d due to severe
pre-eclampsia. I had a fairly uneventful pregnancy. Around 30 weeks I
began to have a lot of swelling in my hands and legs, but figured it
was part of being pregnant in the summer. At my 34-week appointment, I
was surprised to discover that my blood pressure was elevated and I
had protein in my urine. My OB sent me to the hospital for monitoring.
I was diagnosed with severe pre-eclampsia and was induced the next
The induction was far from the birth scenario I'd envisioned. Instead
of walking around and keeping myself distracted, I was stuck in bed
(mostly on my left side) and told to minimize stimulation to keep my
blood pressure low. I had wanted a natural birth, but the only part of
that plan that happened was no epidural. After 11 hours of Pitocin, my
OB said Norah wasn't handling contractions well and we'd need to do a
c-section. She left the room to arrange it, but Norah had other plans!
I felt a quick change from painful contractions to a strong need to
push. She was born after only 10 minutes (approx 3 contractions) of
pushing. She was 4lbs 11oz and 17.5 inches. I got to hold her for a
minute before she was taken to the NICU. Unfortunately I had issues
with retained placenta and had to have an emergency D&C under general
anesthesia, so I wasn't able to see her again until the following
afternoon. My husband, who was amazing through labor, was able to be
with her. It was very hard emotionally to be separated from my sweet
baby. My blood pressure remained high while I was in the hospital, so
I had to take it easy. I nearly laughed when (months later) I noticed
that my discharge instructions said "home to bedrest with bathroom
privileges." Not exactly feasible when you have a NICU baby!
Our 23-day NICU stay was uneventful - no breathing issues, jaundice,
or serious health concerns. Norah just took her time figuring out how
to eat so she was fed through a tube that went through her nose into
her stomach. I had no idea that the suck-swallow-breathe instinct
isn't developed until around 37 weeks. Sure enough, that's right about
when she caught on. We gave her bottles to get her home faster and she
never looked back, so I pumped for 8 months.
Now Norah is a vibrant, curious girl of nearly 3. She loves to read,
dance, and pretend to be a princess. She has always been small for her
age, but otherwise you'd never know about her rocky start to life!
Birth Story Two - Emily
As a stark contrast to the first time around where I conceived immediately, it took 14 months to conceive our second child, Emily. I was watched more closely from the beginning, but felt confident in my odds of having a full-term pregnancy since my OB estimated I had a 20% chance of pre-eclampsia again. We found out during my first pregnancy that I have a bicornuate uterus (heart-shaped), so I knew I had some risk of pre-term labor and a breech baby, but I wasn't terribly concerned.
Once again, I had a rather easy pregnancy during my first two trimesters. We were excited to find out that Norah would have a baby sister! At 30 weeks, I had a scheduled ultrasound to check baby's growth. This is when things started to fall apart. We were shocked to learn that baby was measuring about 3 weeks behind, particularly since her measurements were right on track at 20 weeks. In addition, she was breech and my amniotic fluid level was at 7 (8 and above is normal). I was put on strict bedrest and was referred to a maternal fetal medicine specialist. Over the next 5 weeks, I continued on modified bedrest and had weekly biophysical profile ultrasounds. My fluid levels improved and stayed in the 8-9 range. Emily passed every BPP with flying colors, but didn't grow very much and changed from SGA (small for gestational age) to IUGR (intrauterine growth restriction). Bedrest was a huge challenge, particularly with a toddler! I would get sore from laying on my side and felt quite lonely since I was used to being on the go and seeing friends often.
On a Friday around 34 1/2 weeks, my blood pressure began to creep up so I was sent to labor and delivery for monitoring. It improved when I was resting on my left side, so I was sent home on strict bedrest for the weekend. When I saw my OB on Monday, my blood pressure was better but my fluid levels had dropped to 6.7. I was sent home but told to come back the next day with packed bags. On Tuesday, my blood pressure was up again, I had protein in my urine, and my fluid level had dropped to 5, so I was sent to the hospital to be induced that afternoon. My OB thought conditions were favorable for induction/vaginal delivery since I was already dilated to 2cm and Emily had flipped to head-down the previous week. However, after a few hours of Pitocin, Emily wasn't doing well with contractions - experiencing elevated heart rate between contractions and decelerations during contractions. My OB recommended a c-section and we agreed that was the best option. A short time later, Emily was born, all 3lbs 8oz / 16.75 inches of her!
Despite some anxiety about the c-section experience, Emily's birth was much less traumatic than Norah's birth. Part of this I attribute to lots of prayer and lots of confidence in my OB's judgement. I also think my previous preemie/NICU experience helped me to be a better advocate for myself. And even though she was tiny, Emily acted every bit of her 35 weeks gestational age! She began looking for food right away and my OB asked the NICU staff to allow me to breastfeed in recovery. This was an amazing experience and she did so well!
Emily's NICU stay lasted 14 days and was uncomplicated. Like her big sister, she was a feeder/grower the whole time. We worked on breastfeeding, but decided early on to focus on bottle feeding to get home sooner. Again, the NICU was a very hard place to be. With a child at home, I always felt guilty for being away from one of my children. My husband and I have amazing parents and siblings who pitched in to help with our toddler while I spent time with Emily in the NICU. I definitely had at least one NICU meltdown after a failed attempt at breastfeeding. I'll never forget the kind nurse who noticed and brought me a box of kleenex.
Once Emily came home, we began to work more on breastfeeding. Our lactation consultant used to be a NICU nurse and she was an invaluable resource as Emily and I learned to be patient with one another and finally (around 8 weeks old!) succeeded in breastfeeding! I'll always be proud of both of us for sticking with it!
Now Emily is 3 months old and is a very happy, laid-back baby. She melts my heart when she finishes nursing and looks up at me with a smile on her face! And even though she started at a mere 3.5 pounds, she has some cute little rolls on her thighs!
After having 2 preemies, I'm almost entirely certain that our family is complete. This definitely brings feelings of sadness since I never got to have a normal 3rd trimester and childbirth experience. I'll never know what it's like to think "this is it - I'm in labor!" I'll never get the excitement of being discharged from the hospital on the same day as my baby. Instead I have a special set of skills. I can change a tiny diaper of a baby through the holes in an isolette while keeping the attached wires out of the poop. I can speak in terms of cc's and mLs. I have weighed diapers, taken countless temperature readings, and charted food intake for months on end. I love my girls fiercely and know they are a gift from God. Being a preemie mom is hard, but I hope it's given me more empathy for other moms and patience for my children.
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