Don’t Ask for Help, Demand It

By Badass Grace

Hi! My name is Grace, I’m a 29 year old home birthing, breastfeeding, baby wearing momma to 4 beautiful little girls ranging from 10 months-13 years. Before my youngest, I’d always exclusively breastfed, even as I gave birth to my oldest when I was only 16. However, it’s the journey with our youngest has by far been the most challenging and was the biggest fight of my life.

I gave birth to Rebekah on December 14, we had a perfect, uncomplicated home birth. She weighed in at 8lbs. 10oz. and she was PERFECT!  By 2 weeks old, I expressed concern to our pediatrician that I thought she had a posterior tongue tie. The doctor said that her frenulum didn’t extend and that the baby was just fine, just probably a tad uncoordinated. She finally hit her birth weight again at 3 weeks old (usually by 2 weeks at the latest) but our doctor still wasn’t concerned. At 4 weeks, we lost some weight, she was down 2 oz. the doc was finally noticing that stuff seemed a bit off; she wanted us to weigh in at 5 weeks. Our weight was only up an ounce or 2 and she wanted me to supplement. I was very frustrated, I didn’t want to do that, I wanted the help that I’d originally sought with the breastfeeding.

Grace1

I tried the bottle but she wouldn’t take it. I’d had it!!! I wasn’t getting the help from our pediatrician so I called around to find someone that was trained in tongue ties. I came across a local ear nose and throat doctor that would take her. He said that while she had a mild tongue tie, it shouldn’t be interfering with nursing. The only other person that I could think of was a nurse that helped me with my oldest 12 years earlier. I tried to reach her through the hospital but to no avail, finally I turned to Facebook, asking for people to help me get in contact with her. Within 2 hours, this woman was returning my phone call. She gave me a few tips to try until she came on shift a couple of days later. I tried the suggestions and they didn’t work. I went to see her when she worked, and FINALLY, after 6 long weeks, I had someone that truly listened to me. She was the first person to ask to see how Rebekah did with a bottle, between that, and seeing the problems that we were having while nursing, she said that we had a dysfunctional suck and no tongue tread. The nurse called a doctor that is in the same practice where we normally went, and she had us seen that same afternoon. This doc clipped Bekah’s anterior tongue tie, and immediately she had a somewhat stronger latch!!! Over the 3 days that our dear nurse was on shift, we gained SEVEN ounces!!!! I couldn’t believe it! I stopped trying to supplement, she never took more than 2 ounces of formula per day while I was attempting.

The following week, we lost 5 ounces. I was devastated. I decided to pick up the supplementing again, and keep on trying. I was spending my entire day trying to get her to eat. Nursing sessions would take over an hour to get her to nurse for even 10 minutes, and it was awful. She’d scream, cry, and thrash around, it was heart breaking! At 8 weeks, I called our nurse again, she was my only ally. This time, she was worried. She told me that something wasn’t right. She wanted us to travel to Albuquerque (3 hours from home) to the children’s hospital to have a swallow study. She called our original pediatrician to discuss the issues. The doc gave her attitude, accused me of not supplementing as suggested, and said that I wasn’t doing my part. ARGH!!! The nurse persisted and got us an appointment and stressed that she wanted the doc to see the baby take the bottle. That afternoon, the doc sent us to Albuquerque. I don’t know if she finally saw stuff wasn’t right or if she just sent us to shut me up. While in Albuquerque for that week, Rebekah was seen by lactation, speech, OT, many docs, nurses, and everyone in between. As normal, her weight fluctuated, she gained one day and lost for a couple days. No one knew what her deal was, we tried a million different things, and finally on day 5, the ENT’s saw her and FINALLY clipped her POSTERIOR TONGUE TIE! That’s what I thought our issue was from the beginning!!! UGH! She could finally latch, maintain her latch, I didn’t have to hold the “c” hold on my breast to keep her on, she was calm, and she ate normally for the first time ever! 2 days after, we were gaining, and I was ready to be home to my husband and older daughters! We came home and I was confident that we were healthy. We were discharged on her 2 month birthday.

Grace3First time feeding without the “c” hold. 

We came home and I swapped doctors. I went with the one that clipped her tongue the first time. I couldn’t stand that our first Ped, who I’d seen for 8 years previously with my other girls, had blown me off so much. We gained 6 oz. the first week, then 2 oz., then 1 oz. the 3rd week home. Even though we were gaining, we were falling on the growth charts. She was fighting to eat, fussy, stressed, seemed colicky, and had a rash from head to toe following her 2 month shots. Our new doc was concerned. She decided she wanted more testing done. We were being readmitted.

This time, I was a bit better prepared emotionally. It was stressful being away from my husband and older daughters! Rebekah and I made the 3 hour trek back to Albuquerque and she was admitted on Sunday, March 9. My tiny baby girl was being tested for Cystic Fibrosis, the intensive swallow study, they did genetics, blood work, checked for malabsorption, even checked with cardiology, and a million other things. Thank God everything tested normally. I couldn’t understand it. No diagnosis, but more weight loss, and just a fussy, screaming, stressed baby and momma so far from home, and all alone. The doc said that if Bekah didn’t start to improve she would need to place an NG (the feeding tube that goes in the nose). I cried at the suggestion. I didn’t want it. I just wanted my baby girl to be fine. After the doctor left, and I had time to think, I realized that it might be a huge help, if we could relieve some of the stress and pressure from FORCING Rebekah to eat, she might calm down! When the doc made rounds the next morning, I told her I wanted it. I wanted to see what it would do, nothing else had worked and I was desperate to help her, however it meant. While our doctor wasn’t thrilled, she had it placed. She felt that I was sort of jumping the gun, and she later apologized saying I made the right call. But once we took the pressure and stress off of her, she did GREAT! She gained weight! And if she stressed, I didn’t have to force her to eat, we just tube fed her pumped breast milk! I was thrilled! My baby was doing so much better! But the hospital policy wasn’t to send children home with an NG. That meant we either had to stop using it, or move to G-tube. She was nursing sooooo much better! We had a surgical consult on Tuesday, and they set our appointment for the following day at noon (Mar. 19). I was truly going to have a long term tubie. It still seems surreal. She came out of surgery well, and we had a rough first night, and tough day as they slowly increased her feeds. She was hungry! We finally started gaining, really gaining! And MAINTAINING! Rebekah was discharged that Sunday, March 23, and we haven’t looked back since.

Grace

After removing the stress and the panic, my girl will even comfort nurse now!!! It was simply an oral aversion after taking so long to fix that damned tongue tie. I am so thankful that my baby girl is doing well. You’d hardly know we had a rough start. She is now meeting and exceeding her developmental milestones. This ornery little lady is giving me a run for my money! She started slow, but now that she’s going, we’re set. She has been crawling since 6 months old, pulls up on everything, stands on her own, and nurses and eats table food like a champ! We’ve now gone 3 months without using the feeding tube at all!  At the earliest, we’ll get the tube pulled in the spring, once cold and flu season passes.

Rebekah started by going for weekly weigh-ins, the biweekly, then monthly, and as of Monday, at her 10 month weigh in, my baby girl was placed back on a TYPICAL check-up schedule!!!! She doesn’t have to go in until her birthday!!! I left that appointment in tears! We’ve worked our butts off for this! She’s perfect, just the way she is, now weighing in at a whopping 16lbs 10oz!!! She’s tall and skinny, just like her sisters! <3 I praise God every day for the progress that Rebekah has made, and that I was able to advocate for my tiny girl that something truly wasn’t right. Through all of this, I’ve finally figured out what I want to do for a living: I have wanted to get my doula certification for a long time, but I’ve realized that I need to specialize in the postpartum period and particularly with the breastfeeding relationship. It’s where my passion is. People ask me when I’m going to stop nursing her, and I tell them that we will nurse as long as she wants to. We fought for what we have, and I’m not putting a time limit on any of it.

Ask an Expert: Returning to Work and Keeping Milk Supply Steady

By Nancy Mohrbacher, IBCLC, FILCA

Fan Question:

“I’ve been breastfeeding my LO for 2 months. Two weeks ago I returned to work full time. I usually take 3-4 pump breaks a day. At my first pump I get about 5-6oz and every break after that 2.5-3oz. So collectively I bring home 10-14 oz a day. My son takes about 3 oz/feed and I am worried I’m not going to be able to keep up and I can’t afford to supplement. What advice can you give?”

 

Sounds like you’re doing really well! On average, from 1-6 months, breastfed babies take 3-4 oz. per feed and about 25-30 oz./day. After they start solids, they need less milk. Many mothers worry that (like a formula-fed baby), their breastfed baby will need more milk as they grow, but that’s not the case. As baby’s growth rate slows, his need for milk stays about the same. To keep your milk production steady over the long term, keep an eye on your total number of milk removals (breastfeeds plus pumps) per day. Every mother has a Magic Number, the number of daily milk removals needed to keep milk supply steady. On average, this is around 7, but for some it’s a little more and for some it’s less.

One way to keep this number stable is to focus on breastfeeding as often as possible when you and your baby are together. For example, breastfeed when you wake in the morning and again just before you leave your baby with the caregiver. Breastfeed before you leave the caregiver after work and as often as possible when you’re together. Think of it this way: every extra breastfeeding means 3-4 oz less you’ll need to leave while you’re at work. Read more about the Magic Number on my blog: http://www.nancymohrbacher.com/blog/tag/magic-number

Pacing bottle feeds while you’re at work can also help baby feel full with the least amount of milk. For details, see my free handout for the caregiver of a breastfed baby: http://issuu.com/nancymohrbacher/docs/mohrbachercaregiverbfbabyrev2/1

To simplify your life as a working and breastfeeding mother, I’ve included lots of great tips in my new book, Working and Breastfeeding Made Simple (available in e-formats and paperback): http://www.amazon.com/Working-Breastfeeding-Simple-Nancy-Mohrbacher/dp/1939807131/ref=sr_1_1?s=books&ie=UTF8&qid=1413648378&sr=1-1&keywords=working+and+breastfeeding+made+simple

I also cover keeping milk production steady in my Breastfeeding Solutions app for Android and iPhones: http://www.nancymohrbacher.com/app-support/

Best of luck!

unnamedNancy Mohrbacher, IBCLC, FILCA is a board-certified lactation consultant in the Chicago area who has been helping breastfeeding families since 1982. Her books for professionals are used worldwide. Her books for parents include Breastfeeding Made Simple: Seven Natural Laws for Nursing Mothers, which she co-authored with Kathleen Kendall-Tackett, and her tiny problem-solving guide, Breastfeeding Solutions  In 2013, Nancy released her Breastfeeding Solutions smartphone app (available for Android and iPhones) to give mothers a quick, go-everywhere source of breastfeeding help. Nancy speaks at events around the world.

A Review of the Milkies Milk-Saver and Freeze

It’s no secret that a breastfeeding mother truly does cry over spilled milk. I never thought about this as it relates to leaked milk. I remember when I first heard about the idea of collecting the leaked milk directly from the breast to be used later. It’s hard to deny the brilliance. I have teamed up with Fairhaven Health to bring you this personal review.

Breastpads are great, but what if we could collect that milk that is being wasted and use it later? Some women leak as much as 4 ounces of milk per day. Depending on the age of your child that is more than one feeding! And we all know that breastmilk can be used for many other things such as skin care and a home remedy for just about any ailment. Breastmilk soaked in a shirt or pad is wasted breastmilk.

20140808_154328Ever had this problem? (The milk leakage, not the toddler left hook to the eye, although I’m sure many of you can relate to that too.)

I put the Milk-Saver and Freeze products to the test in my own home to see just how well it would actually work. It was difficult to get started because whenever I sat down my 3-year-old would have taken it somewhere while he pretended it was a glove. He loves this thing. He thinks it’s hilarious to put it on his hand and uses the carrying case for his small toys.

**Tip for use: If you have a grabby toddler keep it hidden just under your chair/couch or tucked in a magazine rack, etc. Because they will take it and hide it and laugh when you ask where it is.

IMG_2942

Once I was able to get my hands on the Milk-Saver I tucked it into my shirt. Make sure you put your nipple in the hole! It’s fairly subtle. It’s smooth on the front mimicking the shape of your breast inside of a bra. It seemed bulky at first, but when I actually tucked it in and looked at this photo above I do think it is quite discreet.

**Tip for use: Put it in place first then adjust your shirt for nursing. When I pulled my shirt down to nurse I found that it was a bit more difficult to slide it in because the fabric had already been stretched. When the Milk-Saver was already tucked in my shirt pulled down just fine.

A huge, major, amazing, wonderful bonus to this product is that your child can’t twiddle your other nipple! This bonus might only apply to tandem nursing moms since most of the leaking occurs early on when baby can’t really do this. However, if you have a new baby, are leaking and also nurse a giant, twiddling toddler then go ahead and add this to the list of interventions for this annoying habit!

I personally don’ leak very much and not with every feeding. However, the times I did leak I was really happy to catch the milk. It was satisfying to have this leftover breastmilk to freeze or even just hand it to my 3-year-old to gulp down in a cup; rub it on my face to help with acne; throw it into a smoothie, or on my baby’s bottom! The uses and benefits of breastmilk are endless.

IMG_2923

Once I have completed my nursing session I carefully pull out the Milk-Saver and set it in the travel case that doubles as a stand. Then I grab a freezer bag and dump it in.

**Tip for use: Be careful getting up so you don’t spill it getting over to the fridge.

Now comes the second product of this review. The Freeze. This is a breastmilk storage system that saves room and organizes your milk. Any person who freezes breastmilk should definitely have this. The Freeze lives in your freezer. You place your freshly collected milk in the freezer bag and place it on the metal shelf on top. This freezes the milk flat. Then you take your flat, frozen milk and slide it into the open slot on top. Your milk is automatically being saved in the order it was collected. When you need to use the frozen breastmilk you slide the bag out from the bottom slot. It will be the oldest milk; the milk you want to use first.

unnamed

**Tip for use: Even if you collect enough milk in one day to fill the Freeze then you can simply pop off the front (which easily disassembles for cleaning), pull all of the milk bags out (which are now neatly organized in the most space-saving way possible), put a rubber band around it and label the top bag with the date. It’s a hell of a lot easier than having a freezer full of misshapen bags each labeled with a different date.

I found the Milk-Saver and Freeze to be useful and I would recommend this product to breastfeeding mothers. The Milk-Saver comes with a travel case and can easily go with you. I personally would not bring it along on a shopping trip or out to dinner simply because of the steps needs to collect the milk. These are situations where I would just use a breastpad. However, a woman who leaks a lot might still find it beneficial to bring it along considering the amount she might collect in one breastfeeding session. I would definitely bring it along on longer trips away from home. Even if you don’t end up freezing the milk because you are away from your storage system you still get the benefit of protecting your shirt from a milk stain. The Milk-Saver is great for nursing when mom is in an upright position. Although you really could turn it sideways when lying down. It won’t work great for when sleeping, but let’s not get carried away. Mom needs sleep anyway. Some leaked breastmilk just comes with the breastfeeding territory. The Milk-Saver and Freeze do very well what they are advertised to do. Badass stamp of approval.

I highly recommend you check out the Milk-Saver and Freeze and the huge selection of fertility, pregnancy and breastfeeding products at Fairhaven Health!

Abby Theuring, MSW

Top Ten Reasons to Attend MommyCon

10. Find Your Mama Tribe: You will make friends. I mean you actually will make friends. The place is teeming with moms. They even have mom to mom contact cards lying around so that you can easily exchange contact information with the people you meet and want to see again. The atmosphere is tailored to celebrate all of the beauty in motherhood, to bring moms together who are in similar places in their parenting journey and to strengthen bonds between us. You’d think it was like a party for moms or something. Oh, wait…

10665227_635830443203360_6109071378921621054_n

9. You Get to Touch Stuff: It’s not a museum. It’s a giant playdate with tons of amazing products for you to pick up, hold, try on and ride around on. And the stuff is freakin’ cool. I have attended many MommyCons at this point, but I never skip wandering through the vendors. I always see something that I have never seen before and it’s always awesome. You get to eat the Milkin’ Cookies, slather on the Motherlove, toss your kid into a Joovy stroller or wear your little one in a Lillebaby. But that is just the tip of the iceberg. And I’m not even talking about the play area with tons of toys for your kid to play with. It’s like a play area for moms!

 8. For All of the Tears: I can almost guarantee that tears will be shed. Whether you are listening to a speaker who is touching on something you thought you were going through alone, a workshop where your personal struggles are being individually addressed or a private conversation where you finally feel comfortable to open up about something you haven’t wanted to talk about; whether you are laughing so hard that you can’t control yourself or you just won a brand new stroller, car seat and baby carrier, I am confident that you will be moved to tears. I have seen it. Every. Single. Time.

10629594_633780266741711_4595518673291088317_n

7. The Baby Guy: Follow the loud voice and he will lead you to fun. It’s no secret that Jamie Grayson aka The Baby Guy likes to have a good time. He lives up to his reputation in person. Walk right up to him and give him a hug. This is not a place where the speakers sit backstage and just appear at curtain call. You will have the opportunity to have a chat and picture with some of your favorite bloggers and health professionals such as Jessica from The Leaky Boob, Bunmi from Honest Toddler, Jamie from I Am Not the Babysitter and Dr. Jay Gordon.

6Normalize Society: When you walk the halls and rooms of MommyCon you get transported to what seems at first like another dimension. Upon further assessment you realize that this is actually an example of a society that has been normalized to, well, nature. The human body, the personal interactions and the group mentality are all working in an idealized manner. The human body is respected as a birthing, breastfeeding and parenting machine. People have giant smiles on their faces and if they don’t then they have several people gathered around helping, supporting and listening. The group mentality is one of positive power. Like-minded families come together and understand their connectedness in their individuality as parents and families.

10392434_633344203451984_5295550180647049027_n

5. Mandatory Bag Check: You can bring your actual bags inside, but you won’t find any of the other kind of baggage here. Everything about you is welcome here. Your struggles, choices and parenting style. But this is real life. You won’t find any of the keyboard courage, butthurt and abuse that you have likely encountered on-line. When MommyCon says, “I support you,” they mean it. Whatever our differences are they do not trump our love for each other, our passion for connecting face to face and our overall similarities as families. Humans are social creatures and we are meant to connect this way. Nature simply doesn’t allow for all of the negativity to take over as happens in more unnatural ways of connecting.

4. Xza Likes to Cause a Stir: You might have trouble tracking down the Owner and Creator of MommyCon. After one MommyCon my husband said, “Did we see Xza today? Oh yeah, she was that blur.” Xza works her ass off to put on these conventions and she runs from sun up to sun down. But she will always stop to host a giveaway or throw t-shirts or exercise some other method of causing excitement in the room. I’ve actually witnessed her tossing t-shirts into a crowd of moms roaring with excitement and throwing their bodies around like they were trying to catch the bouquet at a wedding.

1897880_633780213408383_2024454294267327978_n

3. You Feel Important: Because you are. This one comes courtesy of my mom, Grandma Badass, who has attended 2 MommyCons. “You feel like you are a part of something. Even I felt that way as a Grandma! You feel important. The vendors are awesome. Everyone is there with ideas to make parenting easier and to help with any struggles.” No one is more important than a mother and at MommyCon you actually feel it.

2Question Everything: Empowering women is not about telling them what to do. It’s about educating women on their choices, helping them decide what is right for them and giving them the confidence to make the decision that is best for them. You will leave MommyCon smarter. And you’ll be surprised because you won’t remember doing anything except having fun. But you’ll know more about babywearing, breastfeeding, birth and much more. When women come together we get the courage to question things. When we question things opportunities open up. When opportunities open up we get to take control of our lives. And when women take control of their lives we are a force to be reckoned with. When you attend MommyCon you join a movement of Questioning Everything.

10660385_633342276785510_5043302970607148080_n

1. Sometimes, Just Sometimes, It’s Free: Enter below to win your chance at a pair of tickets to Anytown, USA! Yep, you heard me, you pick the city. Click here to see the stops MommyCon is making this year and next. There will be TEN (10) winners! If you don’t win, don’t fret; I’ve got the hook up. **Use promo code “Badass” for $10 off your ticket price!**

a Rafflecopter giveaway

“Our Son is My Hero”

By Badass Kortney

I’m the mother of five beautiful children and wife to an amazing man.  Our oldest son, Hutson is 11, then we have a set of boy/girl twins, Deacon and Finley who will be 3 next week and then our second set of boy/girl twins, Piper and Harvey.  We did IVF to conceive both sets of twins after 6 years of secondary infertility.  I was able to breastfeed my first set of twins for 16 months before they self weaned.  Piper and Harvey are 8 months old and still going strong.  This is my story…

rtutyirty

The week of Sept 8th there was a virus sweeping through our house.  All of the kids were catching it one after the other starting with the oldest.  It was just a low grade fever and cough.  It seemed to last about 3-4 days and then it was done.  Harvey was the last to catch it and had just been running a bit of a fever but that was really it.  On Sept 18th I put him to bed after nursing him like every other night.  The morning of Sept 19th he woke up crying, I went to get him and change his diaper and he had a stuffy nose and was coughing.  I changed his diaper quickly and started cleaning off his nose.  He started gagging and turned blue.  I picked him up and leaned him forward to help him get the mucus out of his throat.  He threw up and started crying.  It scared me so bad.

I thought he would be better by day 3 and he seemed to be worse.  So I got on the phone with the pediatrician to see if I could get him in.  The earliest appointment they had was 3:30.  I took it but still felt uneasy.  He had fallen back asleep in my arms.  I decided I’d check his temp and try to nurse him.  He had a low grade temp so I sat down to nurse him.  He would latch for just a second and then pull away and gasp.  By this point I was scared.  Something was wrong. I tried to get him to wake up but his eyes just rolled back in his head and he was limp.  I was shaking as I called my husband and told him to meet me at the ER.  As calmly as I could I got Deacon and Finley in their carseats and buckled up.  Then I got Piper and Harvey in their carseats and headed to the ER.  I kept reaching back and grabbing Harvey’s hand to make sure he was still conscious.  He would grip my finger.  We don’t live far from the ER and my husband got there before I got him out of the car.  He stayed with the other kids while I took Harvey in.  He just snuggled into my arms and slept.  They took us back immediately and checked vitals and everything was fine.  We waited for the doctor and I asked if I could nurse him.  I tried again and he puked.  He was lifeless.

rtjeryj

They decided to start an IV to get fluids in him as he was dehydrated.  He hasn’t nursed since going to bed the night before.  They tried ELEVEN times to start an IV.  He never flinched.  By this time I was sick…something was very wrong.  I asked that we take him upstairs to the pediatric unit.  After a nasty remark by the nurse I was shown up stairs.  The nurses knew right away something wasn’t right and the doctor on call was right by my side in an instant.  They realized they wouldn’t be able to get an IV b/c his veins were so small and the ER nurses had blown any that he did have.  So they did an IO line in his fibula (its an IV that goes into the bone).  They pumped him with fluids and the doctor said he needed to be admitted but I’d have to go back to the ER to do that.  After what seemed like forever but was really about an hour we got admitted and back to the pediatric unit.  The doctor ordered a spinal tap and CT scan.  She had the results of the CT within 30 minutes and that’s when she told us he had extra fluid/blood in his brain and what appeared to be a cyst.  We would have to be transported to the Children’s hospital and see a Pediatric Neurologist.  But she thought that the extra fluid and “cyst” could be pushing on something and causing him to be so sleepy.

An ambulance came and transported us to the other hospital.  By this time my mother in law had gotten to our house to stay with the older 3 kids and my husband was with me and he had Piper so I could continue to nurse her.  We got to the Children’s hospital around 10pm on Friday night and they started assessing him.  They needed to get an IV started b/c an IO can’t stay in for more than a few hours.  They had taken him straight to the PICU and several nurses looked him over looking for a good vein.  He had nothing.  They ended up calling the Medivac team to come in and see if they could help.  These women were amazing.  They only poke him twice and they got 2 IVs started.  Several Neurologists had come in and it was decided he had too much pressure on his brain for the fluid/blood and he needed an EVD (Drain).  They had ordered an MRI to be done but said it would be Sunday before they could do it.  This is something I was not happy about.  He was completely lifeless… something was very wrong and I wanted this “cyst” gone. The EVD was placed and he was finally able to rest but I couldn’t hold him anymore.  Watching my baby lie there, completely helpless was the most painful thing I had ever done.  As we waited for the MRI on Sunday my husband was bringing Piper to me every 3-4 hours so she could nurse.  She couldn’t go in the PICU so I had to nurse her in the waiting room while my husband set with Harvey.

srtjyi

Around 1:30 Saturday afternoon Harvey moaned so I jumped up to check on him and he had dumped 58cc of blood into his drain.  He had been putting out 10-15 cc an hour so that was a lot.  I called the nurse and she was shocked to.  The Neurologist came in and seemed baffled as to why he would have dumped so much so fast.  I asked if we could please to do MRI now and he told me again that they couldn’t do it until Sunday.  So I asked for a CT scan.  Just to compare to the day before to make sure the “cyst” hadn’t ruptured or something.  Thankfully he agreed to the CT scan.  He was taken immediately.  It was done pretty fast and they brought him back to the room and started hooking him back up when they came in and said, “Get him intubated, he’s getting an MRI NOW!”  I don’t know what they saw on the scan but things got serious real quick.  I wasn’t sure what to think I just knew I was glad they decided to take me serious.  I may not know much but I know my kids and I knew something was VERY wrong.

They said it would take a few hours for the MRI results so I decided to try and get some sleep.  At 1:30am I was woken up to a room for of doctors.  One of them started talking to me about what they saw on the MRI.  Harvey had a brain aneurysm that had ruptured.  Had he not gotten the drain 12 hours earlier he would not have survived the rupture.  Nothing else they told me mattered.  We needed to do whatever it was going to take to fix him.  I was terrified.  I called my husband and told him what I knew at that point which wasn’t much, he has an aneurysm and needs surgery within the next 12-18 hours.  They were sending the surgeon to talk to me as soon as he had a plan.  My husband and Piper came to the hospital so he could be there when the doctor arrived.

Apparently this isn’t something that happens to babies.  This happens to adults in their 60s.  The doctors were baffled.  They had no answers as to why it happened but they knew it needed to be fixed.  The surgeon talked to us about the risks of surgery and there was no question other than, “When can we do it?”  We were absolutely terrified.  We were told he would need therapy to regain strength and learn how to roll over again, sit up and crawl.  He could lose most of his fine motor skills.  On Sunday, September 21st Harvey was taken in for surgery.  He was in surgery for 7 hours.  They were able to successfully clip one of the aneurysms but there was another one.  A much larger one but it was clotted and had no active blood flow so they decided to leave it and see if it would reabsorb like it was supposed to.  We would follow up 10 days later with an angiogram to see if the surgery was successful.

sehrtu

The next several days were the worst.  Seeing our baby intubated, his head cut up and beginning to swell.  He no longer looked like himself.  His eyes swollen shut.  It took about 4 days for the swelling to go down before he could open his eyes.  He still had so much fluid and pressure on his brain though.  He would try to move his arms and he started kicking his legs.  Two things I had prayed we would see again.  Five days after his surgery I was able to nurse him for the first time.  It had been a week since I had nursed him and I was anxious, scared, excited.  I didn’t know if he would know what to do or not.  But he latched on immediately and started gulping.  So much so that he started vomiting.  I was crushed but determined to get him better I asked if I could give him 1 oz bottle of the breastmilk I had been pumping.  I knew his tummy wasn’t ready for the meal he was wanting.  So over the next several hours I gave him a 1 oz bottle and he gulped it down.  After he kept down a few I decided to try nursing him again.  He nursed like a champ and kept it down!

erjutyu

The next few days were filled with EEGs, Echo of his heart, bloodwork… so much bloodwork and another CT and MRI.  At this point it was a waiting game.  We wouldn’t know much until the angiogram.  Every day he looked better though.  He was nursing longer each time and even started fussing between feedings to nurse even more. My husband continued to bring Piper to me throughout the day and the other kids got to come visit me every other day.  We were lucky enough to have my mother in law, sister and mom be able to help out and stay with them at the house so my husband wasn’t packing them around all day.  He started OT and PT almost immediately and they were amazed at his daily progress.  He was slowly turning into himself again.  But the one thing I had wanted more than anything still hadn’t happened.  I needed a smile.  On day 10 he had his angiogram.  That was the longest 90 minutes of our lives.  But all was clear.  The aneurysms were GONE!   He still had a lot of blood and his ventricles were still enlarged but he didn’t need another surgery.  We were so relieved.  That meant he could really start healing.

unnamfghrthed

Two weeks after we went to the ER, twelve days after he went through surgery he smiled at me while he nursed.  He looked up at me and smiled, milk drooling out of his mouth.  It was that moment I knew everything was going to be ok.  My baby boy was back.  He hasn’t stopped smiling since.  He’s had a couple more CT scans and they show less blood and smaller ventricles each time.  He’s becoming more active and much more vocal every day.  He now knows it just takes a little fussing and I’ll nurse and snuggle him.  Today is day 20 and we are beginning to wean him off of his drain.  We have to be sure that his brain can properly reabsorb the fluid before it’s removed.  If it can’t then a shunt will have to be placed.  But considering 20 days ago our son could have died, a shunt is the least of our worries.  I never imagined as a parent I’d feel so helpless.  I never imagined something like this could happen to us.  This has turned our world upside down.  Every day I hold my breath fearing we will have a setback or they’ll tell me something else is wrong but this little man has proved everyone wrong.  He’s proved to us all what a fighter he is.  Our son is my hero.  He has given me the strength to endure things I never imagined as a parent.  This has bonded my husband and me together in a way I never knew we needed.  As much as I want to ask “Why him? Why us?”  I won’t.  It happened.  It has been a struggle but we are all still here, we are all still fighting and we will take Harvey home.  Not everyone is so lucky to leave this hospital with their baby in their arms.

7ads6x98y