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Saying Goodbye to the NICU!

We are so very excited to be home before Christmas. If you had asked me just last week when I thought we were going home I would have told you it would probable be in early 2015. Well, our son turned a corner and made some rapid progress learning how to eat. We are going home with a feeding tube that goes from his nose to his stomach, but he only uses it at night– and if his progress keeps up we won’t even need that much longer! We are so excited.

I put together some small gift bags for the NICU. When I thought I was going to have the ‘normal’ pregnancy and childbirth experience I had planned on making thank-you bags for my labor and delivery nurses. I never got a chance to do that — though I did send a thank you card to one nurse in particular who was absolutely amazing, and who I will remember for the rest of my life. I wanted to do something to thank the wonderful staff at our NICU for their work. After spending 8 weeks in the NICU we made so many connections and friendships that it feels wrong to just part ways without expressing how much what they did meant to us.

I wanted to find some cute treat bags, but the holiday section at Target was demolished– So we settled for holiday zip-lock bags. When I was thinking about want to put into the bags I wanted to put things they could use: gum, chapstick, etc– Things I had thought of putting into my labor and delivery thank you bags. However, I was planning on making 40+ bags, and those things would get too pricy. So I opted for some others: Chocolate, hard candy, chewy candy, mints, and K-Cups. We heard countless times how the NICU had recently purchased a keurig coffee machine for the break room, but they did not supply the coffee, so the k-cups was our favorite part of the gift bags.

We grabbed a picture with our primary dayshift nurse, passed off the gift bags— and on December 21st walked out of the NICU with our son. I only took 200 pictures from the time we left the NICU until we got home. haha.

We’ve been home for 60 hours and so much has happen that it deserves it own post, but for now I’ll stop here. We’re home!

 

 

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Postpartum Recovery

I am on day 39 of my postpartum recovery, and I thought I’d share my experience. Mine will be different then most because my son is still in the NICU. Also, as a warning: Some of this might be TMI!

Immediately postpartum I felt fine. My chief complaints were back pain and exhaustion. The back pain was from the epidural, which is not something I was expecting– though it obviously makes sense. The exhaustion was from a myriad of things. The night before induction I could not sleep, and then my labor progressed quickly for a primigravida not allowing any rest even after the epidural. I also was dealing with processing all of the emotions of finding out my son had EA/TEF and having him shipped off to another hospital, along with trying to develop a breast milk supply by pumping every 2-3 hours around the clock. So when I was discharged from the hospital 18 hours after our baby boy was born the doctor warned me that this ‘fine’ feeling would pass as she believed I was running off of adrenaline. She made my husband promise to keep an eye on me.

Physically: 

Physically I needed to take 600-800mg ibuprofen every 6 hours around the clock for the first 3-4 days, and didn’t I felt it. My back stopped hurting by this point, and I hated how the ibuprofen gave me a stomachache!

My ‘nether’ region was not as sore as I expected it to be– Sure my stitches itched and burned a little, but using my peribottle and dermoplast every time I used the bathroom was perfect. Until my stitches completely healed (about 3 weeks pp) it felt like I was walking around with a tampon placed incorrectly… Best way to describe it. It was uncomfortable, but not painful.

My bleeding pp honestly surprised me– I was fully prepared for bleed like a stuffed hog for weeks, but I would say that by my 5th-6th day postpartum I didn’t need those giant overnight pads anymore and I switched to always infinity foam regular flow with wings. These things were heavenly! I could hardly feel they were there, and they ‘wicked’ away the moisture and kept me feeling dry. About 2.5-3 weeks pp I was mostly just having discharge and only needed liners.  I still need the liners, but otherwise I’m good.

I was warned about the hemorrhoids and the constipation, but I had no hemorrhoids and actually had mild diarrhea immediately pp. So I didn’t take my stool softener…. but on the 4th or 5th day I was in pain. I was so constipated and had stomach pain that felt like someone was stabbing me below the bellybutton. I took stool softeners and suffered through it. Godspeed my friends! Take the stool softener… even if you don’t think you need it!

Breastfeeding:

The lactation consultant informed me that it appeared I had IGT (insufficient glandular tissue), and probably wouldn’t be able to produce a lot of milk. Still, I was going to try! I was loaned a Medela Symphony from the NICU. It is a hospital grade pump made for exclusively pumping and costs close to two-thousand dollars! Luckily the NICU has a free loaner program for mothers to use while their babies are still in the hospital.

I pumped every 2-3 hours for 20 minutes. The NICU had pumping rooms so even when we were with him I could pump. I took 9 fenugreek pills a day, drank 4 cups of mother milk tea, held hot compresses to my chest while I pumped, looked at pictures of him while I pumped… and after 10 days the most I had ever produced was 0.2ml (combined from both breasts), and I was so exhausted– in 10 days I had not had more than an hour and half of uninterrupted sleep.

I was heartbroken and mourned the loss of my breastfeeding dream. I wish someone had told me that there were really women out there who physically couldn’t breastfeed. I was so unprepared for this, and this was one of the hardest things for me to come to terms with. Even now when someone asks me if I’m using formula or breast milk… I feel like I need to make excuses and explain to them why he’s only getting formula.

Emotionally:

My husband and myself were both very concerned that I was developing postpartum depression and postpartum anxiety. As an already anxious person, we really didn’t know how much of my pp emotional roller coaster was normal for me. For the first two weeks I was so upset and cried everyday– In the shower, while I was pumping, at his bedside, when I talked to his doctors, when we left to go back to the hotel… It was awful.

Now looking back I think I was just dealing with an extraordinary set of circumstances– We went from having a perfectly healthy baby to a baby with a life altering defect who needed surgery, and then he got sick, and I watched him turn blue in front of me… It was agony. What helped me realize that it wasn’t anything more was… When my son was having a ‘good’ day, I had a good day. When he was having a ‘bad’ day, I had a bad day… And it just turned out that he had a lot of ‘bad’ days in the beginning.

As for the anxiety– I still feel that from time to time. I have a hard time falling asleep because I’m thinking of him; I’m worried his nurse doesn’t know how he likes to be soothed by having someone talk to him, or thinking his resident forget to weight-adjust his medication for his 100gram weight gain, etc. That I think is just me being a mother… We’re supposed to be worried about our babies all the time, right?

Overall:

My postpartum recovery has been a lot easier on me than I thought it would be. The emotional aspect was probably the hardest. My 6 week appointment is tomorrow (technically I’ll just be 5 weeks and 3 days pp), and we’re going to discuss getting and IUD when I’m 8 weeks pp. My husband and I are thinking we’re done having children (thinking of going through this experience again literally makes me sick to my stomach), but we’re young and don’t want to do any permeant methods of birth control incase we change our minds. I’ve handled hormonal birth control well in the past and I think the Mirena IUD will be a good fit for us– I’m 23, don’t smoke, and have no plans to have children in the near future. We considered ParaGard which can last up to 10 years, (Mirena lasts up to 7), but I think we’re leaning to the Mirena. I’ll fill you in on how that goes later.

12.1.14

12.1.14

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A month old! (and a new blog…)

When I started to write about my son’s first month I realized that a lot of my post focused on his NICU ups and downs, and I decided his story was in need of it’s own blog.

Learning to Swallow: One baby’s journey learning to swallow– A EA/TEF Kid

This blog will continue to talk about what’s going on with our family, my career, etc. I’ll just skim over his EA/TEF fine details, and leave those for his own blog. I hope that this new blog will help others going through a similar journey connect with me (and for me to connect with them). It has been a crazy month, and this journey is just beginning for our son. I

I’m so in love with our little boy and I want to share some about with him you all soon. I’ll do a more ‘milestone’ type monthly update in the next few days.

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Update!

Wow. What have a learned from the last 3 weeks? You need to go with the flow. As a super type A person, this has been incredibly difficult for me, but I’m getting better at it.

Losing my beautiful natural birth, missing out on the golden hour, having a baby in the NICU, having a baby undergo surgery on his 3rd day of life, having a baby face and overcome several bumps in the road to recovery, accepting I am part of the 3-5% of women who physically can not breastfeed, and many other things I’m sure I am forgetting to mention– they have helped me overcome my inability to ‘go with the flow’.

Baby C had surgery on the 28th of October. That morning C and I went back to see our baby boy, and meet with the anesthesiologist, surgeons, and neonatologists assigned to his case. They went over some aspects of his surgery, and we passed our cell phone numbers off the nurse who would be updating us throughout his surgery. Eventually they had to take him back, so we gave him kisses, and left teary eyed to wait. We were so excited, and terrified.

Finally the wait was up and we learned that the surgery went very smoothly. Our son tolerated it very well, and they were able to repair his fistula with one surgery. He had been impressing everyone since he was born, so we were not surprised that he did so well. We were overwhelmed with joy, and so thankful that he was on the road to recovery.

The next few days we faced several bumps in the road. They were worried about his blood pressure being too low, his lack of urine output, and he developed a pneumothorax on his left side. They had to start him on a drug to help his BP, and put in a chest tube to relieve the pneumothorax. Then they had to consult with nephrology because his kidney function tests were showing our boy was suffering from acute kidney injury. He also wasn’t able to be weaned off of the ventilator because he wasn’t fully awake yet, and they blamed that on his kidneys not filtering everything out.

It was several days of constant stress. It seemed like every time we took one step forward, we then took two steps back. Finally on November 1st they were able to remove the chest tube on his right side. Then on the 2nd he started really waking up! When we did his evening care on the 2nd we saw him fully opened his eyes of the first time since before surgery. Then on the 3rd they were doing a test to see how he would handle being off the ventilator, and he did so well that they went ahead and extubated him!

Finally opening his eyes!

Finally opening his eyes!

On the 4th they did a swallow study to see how his repair was holding up. At first they thought he ‘passed’ but upon closer evaluation the radiologist told us he saw a small leak at the repair. We were so sad to hear that because they didn’t plan on retesting him until the 11th. The only reason we really cared about the extra time is because our son can not have anything to eat orally. He’s getting all of his nutrition IV, but his stomach is still empty and he feels ‘hungry’. He was so upset that night, and we can’t hold him because he still has a chest tube on his left side, and we couldn’t feed him. It took over an hour to calm him down. We felt so depressed and helpless and our hearts were heavy knowing we had another week before he might be able to eat.

Extuabted and awake. <3

Extuabted and awake. ❤

Today (5th) we took another step forward! His kidney function tests are finally starting to improve. They had kind of stalled out (still high, but were not inclining like they had been) over the last two days, but today was the first day those numbers finally started to come down! Nephrology told us that they were optimistic that this would eventually happen, but until I heard that the numbers were coming down I didn’t believe them. We also learned that surgery reviewed his swallow study results and decided that the ‘leak’ the radiologist saw was so tiny that they felt comfortable retesting on Friday the 7th, instead of waiting a full week.

We were elated to hear this. The sooner he ‘passes’ his test, the sooner he can begin oral feedings. Once he has oral feedings, if nothing is coming out of the chest tube then they can take it out and we can hold him! From there it’ll just be getting him to take a bottle and nurse well before we go home.

So our fingers are crossed for Friday.

Baby burrito with the pacifier is about the only way to soothe a 'hungry' baby.

Baby burrito with the pacifier is about the only way to soothe a ‘hungry’ baby.

It took several days for us to get a routine down. Running between the hospital and the hotel, trying to find time to sleep and eat, and me pumping every 2-3 hours around the clock– we were exhausted. More than exhausted, we were dead on our feet. I was getting the postpartum blues, and my husband was concerned not only for our son, but feared for my mental and physical health. Being discharged from the hospital 18hours after delivery, and running around as much as we were was hard on my body. I am happy to report now that we are doing a lot better.

Not only do we finally have a routine, but I’m doing better emotionally. My husband confessed to me that he was sick with worry for my mental health. For days after being discharged the stress of what was going on with our son, and learning I couldn’t breastfeed had me so depressed I couldn’t muster a smile if you offered cash endorsement. Finally we started getting ‘good’ news, I started to learn how to just take things as they come, and having our routine down– we are in a much better place than we were a week ago. I also came to accept that I can not produce breastmilk* and making peace with that brought me more peace than I can describe.

*While my son is in the NICU I’m going to continue to pump (on a less frequent basis than I have been) so that when we do his care I can give him ‘oral care’ with the few drops I am producing. It’s not much, but it is something I can give. Once we go home I am not going to pump anymore, and we will be using formula. Coming to this decision was very difficult for me, but I have the support of my husband and the lactation consultant.

 

 

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His unexpected birth story…

My husband's emotion in this situation says everything.

My husband’s emotion in this situation says everything.

My baby was born on October 25th, 2014 at 7:53 pm 6 weeks premature, and weighed 5 pounds 7 ounces and was 18.75 inches long.

Our birth story actually starts on October 15th, 2014. At nearly midnight exactly on that Wednesday morning I woke up with the very sudden urge to pee. I remember as I was scooting myself out of bed that I felt like I was going to pee the bed, but luckily I got out of bed before that happened. I rushed to the bathroom and was mortified to learn that I needed to change my pants. I changed my pants and was making my way back to bed when the sensation hit again! I knew this couldn’t just be pee.

I took a few seconds to let that realization sink in, and then I woke C to the news my water had broken at 32 weeks and 4 days. He jumped straight out of bed and started getting ready—I was not as composed. I wanted to talk to whoever was on call that night to let them know I was coming in, but after not being able to find that information I called labor and delivery and informed them we were on our way. Then I panicked about not having a hospital bag, the fact that I was losing so much fluid and getting it all over my pants, and the fact that my baby was just too small to come into this world. C was my rock, and he managed to talk me down. We were on our way!

The fog was so thick outside that we couldn’t see more than a few feet ahead of ourselves, so despite his desire to rush C couldn’t. While I wasn’t having contractions just yet, I called and started updating our parents, and both of our moms planned on meeting us at the hospital. Then  I started having very mild contractions every 2-5 minutes, which made the fact that C had to stop for gas that much more ‘exciting’. Luckily they remained very mild, and we made it to the hospital around 2am.

I was embarrassed that my pants were soaked, because it’s not like everyone else knew my water broke. C said, “You could be missing an arm, and be worried about a paper cut!”. I wrapped the towel that I had sat on during the ride (that was practically saturated with fluid) around my waist and we made our way into the hospital. The security guard asked us if we knew where we were going, and C started to tell him my water broke, and he responded, “Oh I know where you’re going, but do you know where your going?” He told us how to get to labor and delivery and up we went.

Upstairs I was immediately put into a room and suddenly it got very hectic. The hospital staff did a myriad of things to me: started an IV, double checked that my fluid was in fact amniotic and not urine, and hooked baby boy up to a heart rate monitor and a contraction monitor. Then Dr. H came into the room and checked my dilation, which was just 0-1cm, and he told us the plan: Short term goal was to give me steroid shots to mature baby’s lungs and make it 48 more hours before he came, and long term was he wanted to get us to 34 weeks. He ordered an ultrasound to see baby’s growth and we learned that baby was already measuring 4 pounds 10 ounces— 10 ounces over the 4 pounds the doctors wanted babies to be before they were were born.

Over the next 10 days I was given two steroid shots, started and weaned off of magnesium (to stop any contractions), given IV antibiotics to prevent infection, and baby boy was monitored with hour long NST 3 times a day. I was on bed rest, but I was allowed to get up to the bathroom and shower. C stayed by my side all 10 days and we had friends and family coming and going constantly. I had a very emotional time acknowledging that our son was going to the NICU after he was born. It was knowing that I wouldn’t get to hold him skin to skin, breast feed, or do any of the other things I hoped to do, but the staff at Baptist Health were wonderful at making us feel better and once I came to the realization that he was going to be okay my emotions got a lot easier to handle.

Then on Friday October 24th during our last NST baby C decided to give the nurses a scare by dropping his heart rate down into the 90’s for a minute or two, before coming back up. Up until this point his NST had always been beautiful and even compared to that of a full term baby. At that point the doctor on call said we should go ahead and move from antepartum to labor and delivery just so we could be monitored more closely and if anything was going to happen then that was were we needed to be. I was given a low dose of pitocin (a drug that starts contractions) because the next day we planned on inducing and he hoped that by giving me this low dose over night that it would make my body respond better to the pitocin in the morning.

That night I tried to rest as best I could, but knowing I was going to meet my baby the next day made sleep nearly impossible. Finally at 7am the next morning I was informed we were going on pitocin protocol which says that they will up my dose of pitocin every 30 minutes until my contractions were at a stable pattern.

By 9:30 am I was up to 12 on the pit, and was having regular (but not painful) contractions. Both of our mom’s were on their way. 11am I was up to a 16 and I was starting to feeling pain in my back and some mild discomfort with contractions. Around 11:30am we learned that the contractions are now at a stable pattern of every 2-3 minutes, but they needed to be stronger.

At 1 o’clock the contractions were more intense and I needed to breathe through them. My nurse advised me not to wait until my contractions were ‘white knuckling’ before I asked for the epidural. I was embarrassed asking for it so early because I thought I should be able to handle them better, but I did ask for the epidural. Unfortunately after learning I was only 1-2cm dilated the doctor said I could not have it until I dilated more because he didn’t want me to increase my risk for c-section. Within the hour the pitocin caught up with me and the contractions went from being painful to very, very intense.

Unfortunately I didn’t get to take a birthing class so I had no idea how to breathe through the contractions, and I wasn’t managing them very well. On top of that baby boy was moving around a lot and they kept having to find his heart rate, which meant that the nurse was pushing on my stomach during contractions to find it. I was put on my side, and was half leaning out of the bed, squeezing C’s hand and trying to breathe through them. He was such a champ and offered all the support he could to get me through them.

I kept saying they were coming too close together, but my TOCO wasn’t registering the contractions. So around 2pm the doctor decided to put in an IUP, which is a catheter that is inserted into the uterus along baby’s back, and it registers contractions and their intensity. He waited for my contraction to stop and tried to insert it, but I had another contraction right on top of it and I went from moaning to screaming from the pain. He stopped trying to insert it and waited for it to end, and as soon as it did he quickly inserted the catheter. C tells me that I didn’t even flinch when he inserted it when I wasn’t having a contraction. The doctor then informed me that I was 3-4 cm dilated and could have my epidural.

The nurse had give me two full bags of fluids before I could get the epidural so C and I went back to trying to breathe through contractions coming every 30 seconds to 2 minutes and registered very, very intense thanks to the IUP. I look back and honestly don’t know how we managed to get through them. In between them I was so exhausted I couldn’t even open my eyes. Once I did try ice in-between contractions because my mouth was so dry, but when I didn’t get the ice chewed before one started and I couldn’t find my ‘zone’ before the peak— I didn’t get ice anymore. If I didn’t focus and try to breathe I had this feeling like I was literally not going to survive the contraction.

Finally around 3pm the doctor who was giving me the epidural came in. My nurse helped me sit on the side of the bed, and squeeze her scrubs during contractions. I didn’t have a hard time staying still, but during contractions my whole body would shake slightly but he didn’t seem to mind. I didn’t feel any pain during the insertion of the epidural, and I called the doctor a magic man!  When they laid me back in bed we learned I had lost my bloody show, which meant progress was being made! C came back into the room at this time.

I only had one more extremely painful contraction after the epidural, and after that contraction all I felt was this super intense pressure: It felt like I had to both pee and have a bowel movement and I was terrified that I was going to pee the bed. When I told the nurse this she said that was normal, and that the epidural takes away the pain but not the pressure. I remember thinking that he must be crowning to be feeling so much pressure!

A nurse checked me around 3:15 pm and I was 5-6cm. So in roughly 2 hours I dilated from 1-2cm to 5-6cm. It was after this cervical check that things got scary! I went into tachysystole (which is where my contractions were coming on top of each other with no break in between— which is why I felt like he was crowning from the presssure), baby boy’s heart rate dropped, and my blood pressure plummeted— suddenly our room got very full. I put on my side, had an oxygen mask oxygen placed on my face, the pitocin was stopped, I was given an injection to stop my contractions, and I was given meds to raise my blood pressure. Despite how fast everything happened the nurses and the doctor were very calm in the room. In fact it didn’t register until a few minutes later that something very scary had happened.

They started us back on the pitocin at a half dose (I was on 18, so now I was 8, because they don’t do odd numbers with pit). At this point I was feeling no more pain whatsoever, and even the pressure was negligible, but I could still feel it. She did have to keep coming into the room every once in awhile to turn me side to side because she didn’t like his heart rate. At 6pm she told us that she couldn’t raise the pitocin every 30 minutes because baby boy wasn’t handling the contractions well, and my contractions were not ‘adequate’ on the monitor. They were regular, but not strong enough.

C and I started to prepare ourselves for a c-section. Then at 7:00pm my favorite nurse that we had in antepartum comes in to take over! She checks my cervix and we learn that I am fully dilated. The amazing thing is she was coming in to give us information on a c-section because until we learned I was fully dilated they were really beginning to think I was going to need it. My mom came back in at this point and we told her we were going to start pushing, and she went to grab C’s mom who was hanging out in the waiting room with C’s grandma, and his two aunts. She told us that when my mom came to get her they were joking that C’s grandma had the ‘mojo’ to send people into the labor and she had raised her hands and said, “Have that baby, A!”

My favorite nurse was ‘coaching’ my pushing, and I asked C to count for me. I was determined to push this baby out! Then Dr. H (the same doctor who I saw when I was first admitted, and who started me on low dose pit the night before) was the one who was taking over. He sat at the foot of the bed and examined me. He told me that this was going to be easy. He had my mom hold one leg, C hold the other, and he told me to push while he felt for the pressure. He used mineral oil to help my body stretch, and kept his finger under our son’s head so he could tell me when I was having a contraction— but he didn’t need to tell me. I could feel the pressure. I had the perfect epidural!

He told me my pushing was fantastic, and I needed to keep it up and push with ‘controlled rage’— I did just that. At some point he told C to look down and see his boy. C saw his head and his eyes watered with tears. I gave another push and my mom started crying and saying, “There he is!” He told me stop pushing, and he told me to reach down here and watch my son be born. One more push and he was out at 7:53pm. I only pushed for about 30 minutes.

He came out screaming (APGAR scores of 8/8), so the doctor placed him on my belly, and I held him there while C cut the cord. I was crying and thanking the doctor! The NICU team was waiting on the baby, but before they took him back to the unit and because he was doing so well they brought him over for me to hold. I cried and said thank you, because I didn’t think I would get a chance to hold him before they they took him to NICU. I only had a stage 2 laceration that needed two stitches, and everything seemed to be going perfectly. I was thinking we could actually take our baby home sooner than we thought.

Unfortunately we learned that night that he was going to need surgery to repair a tracheoesophageal fistula, and was being transferred to another hospital. No one could tell us how severe his was, or what the prognosis was. We were both so sick with worry, and it was a crazy crash from being so excited to have our son look so healthy to learn that he was a lot sicker than anyone had anticipated. The next few weeks would be the hardest weeks in our lives.

Read more about the first few days here.

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I’m human, and I need to vent…

Our first family picture taken on 10/27/14. I love our family, and can't wait to be holding my son in our next family picture. <3

Our first family picture taken on 10/27/14. I love our family, and can’t wait to be holding my son in our next family picture. ❤

I know that in some people’s eyes I am too young (at age 23) to be married, and really too young to have a child, but I did not rush this. I dated my now husband for 5 years before we got married. I graduated college and I am a registered nurse, so I’ve got a career that I even plan to further by obtaining my doctorate degree and be a midwife. My husband and I own our home, own our cars, and made the conscious effort to try to conceive a child.

So why is it that when we did everything ‘right’ (except our age apparently) that we have a sick baby we can’t help, and have to step back and let the slew of surgeons, neonatologists, nurses, and PA’s care for him?

I see babies in the NICU and hear their mother talking about how much she smoked while she was pregnant– and she is curious why her placenta was insufficient? I hear the babies addicted to drugs crying in the next nursery, and I hate their mothers for what they did to them. I know others who ‘accidentally’ got pregnant and they are given a perfectly healthy baby, and they complain constantly about how tired they are, and how fussy their baby is– they don’t know how lucky they are. All of this makes me embarrassingly bitter. All my husband and I can do is sit by his bedside, lay our hands next to him, and hope he feels our presence.

We waited till I was nearly done with school, were married, owned our home, were financially stable and ready, and our baby is so sick and there was nothing we could have done to prevent it or help him. I abstained from all caffeine, didn’t even take tylenol for my aches and pains, read all of the books, and took any advice someone would give– and my baby is on a ventilator with two chest tubes, and I’ve only got to hold him 3 times in his 5 days of life. No skin to skin, no late night diaper changes, no waking up in the middle of the night to nurse. Just a piece of advice: don’t tell a mother who has a baby in the NICU that she’s lucky, because she doesn’t have to get up every couple of hours with a crying baby. Are you kidding me!?

On top of all of this– I come to find out that I have IGT (insufficient glandular tissue) and I may be one of the women in the 5% of all women who physically can not breastfeed. Breastfeeding is something I feel so passionately about, even before I knew I was going to have a sick baby. It’s something that is even more important because it is what is best for babies, and he’s in the NICU– he could use anything possible to give him a boost and my body might not be able to do that for him? I can’t express in words the guilt I feel for this. I know that biologically speaking I did not give my baby his TE-Fistula, but that doesn’t mean I don’t feel guilt over it, but I’m a woman and I should be able to give him this part of me and I’m failing.

I’ve met with several lactation consultants, I’m pumping around the clock; every 2 hours during the day and every 3 hours at night, I’m taking fenugreek & blessed thistle (herbal supplements to increase milk supply), I’m drinking mothers milk tea, I’m using hand expression, warm compresses on my chest, and I’m looking at his pictures and thinking of him while I pump. I’m eating high fiber foods, drinking tons of water– and after all of this, and 5 days postpartum I’m producing drops– Drops that are so small I can’t even suck them into a syringe. I was told to keep trying for 10 days, and after 10 days if nothing changes that I should stop– because my body, my stupid broken body, can’t produce the only thing I can possibly give to my son in his time of need.

I feel so much guilt, and I get bitter when I think about all of this too much– but then I remember that my son is going to be okay. He isn’t going to resent my inability to breastfeed, he is going to leave the NICU one day, and I’ll get my skin to skin, late night diaper changes, and waking up in the middle of the night to nourish him (bottle or breast). I remember that his prognosis could have been so much worse, and he is truly lucky to be where he is now. We are lucky to have a  brilliant medical team watching him closely, and keeping him healthy through his recovery process. We have a beautiful son, a strong baby boy– and one day all of this misery will be a distant memory. For now– I’m only human and despite knowing that the negative emotions I feel aren’t helping anyone, they peek out every once in awhile. I’m getting better at realizing faster how useless they are.

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The first few days with a baby in the NICU, and discovering he has a tracheoesophageal fistula…

The first few days!

My son was born on October 25th, 2014 at 7:53 pm at 34 weeks gestation after a premature rupture of membranes at 32 weeks and 4 days. He came into this world screaming, and so healthy looking that we were shocked to learn he had a tracheoesophageal fistula. Before I share his birth story I need to share what happened after.

Shortly after he was born he was taken to the NICU. Knowing he was 6 week premature the two biggest things we were worried about were his breathing, and his ability to suck and breathe at the same time. Babies typically don’t start to develop that ability until they are 35-36 weeks in utero, and he was born at 34 weeks. To combat this they needed to put a tube into his nose and down to his stomach to administer his feedings until they could determine how he would do.

The neonatologist came to talk to us to have us sign his ‘permission slip’ for the NICU, and she said that upon evaluation the only thing she saw so far was that he had a limp thumb, and she didn’t know how much function he was going to have out of it. It was such a minor thing that she wasn’t even going to worry about it until right before he was ready to go home, or even after he went home. We were relieved.

Then she asked about my pregnancy and I mentioned that right before my water broke my stomach had really POPPED in the two weeks prior. I said that judging from the copious amount of fluid I lost, and how much fluid I still had on my ultrasounds, that I thought I had too much amniotic fluid. I had read online that there were several things to cause this, and I thought that what caused mine was my blood sugars. I just barely passed my blood glucose screening at 28 weeks with a 136 (140 is failing). I was surprised that she made note of it, because I had mentioned it every other doctor I had spoken with since being admitted to the hospital and every doctor shrugged their shoulders and didn’t seem to think anything of it.

As I was being transferred from labor and delivery to mother baby we stopped into the NICU so I could see my son. It was then that the pediatrician walked up to me and with sad eyes said, “Mama knew something wasn’t right.” My son was discovered to have a tracheoesophageal fistula, of which there are many different types and the severity of them vary greatly— what it basically means is his esophagus does not go from his mouth to his stomach, but rather forms a fistula to the trachea and there is a disconnect. To repair this requires surgery that only two hospitals in our state do— luckily for us one of them is right down the road. He was going to be transferred there tonight— but he wasn’t emergent and was otherwise stable.

As a nurse I remember learning about TE-Fistula’s in nursing school. However, all I remember learning was that these kids develop severe oral aversions and even at 5,6, or 7 years of age are still being fed by feeding tubes placed into the stomach (g-tubes). So my mind goes to the worst possible case and that dark place is where I stayed for much of the next 36 hours. I was terrified for my son.

The good news was that my son was otherwise doing very, very well. His lungs were perfect and his oxygen levels never dropped and he never needed assistance. His sucking reflex was developed, and did not result in any apnea episodes. He was able to maintain his temperature without much assistance. We honestly believed that had our son not developed a TE-Fistula he would not have needed an extended stay in the NICU and would have been home with us.

He was transferred to the other hospital 7 hours after his delivery, and I was discharged 18 hours after delivery with the promise to make a follow up appointment in 2-3 days. After being discharged my husband and I checked into an extended stay hotel that offered discounted rates for parents in our situation, and we went to the NICU. We were able to be with our son when he turned 24 hours old, and change his diaper and check his temperature. At this point no one could tell us at what kind of TE-Fistula he had and what the plan of care was was, so we made an appointment to be back to speak with his surgeon the next day.

We met with his surgeon he spent 45 minutes or more explaining everything and answering our questions. We learned then that baby boy has a esophageal atresia with a distal tracheoesophageal fistula— which means that he has a blind pouch at the end connected to his mouth, and the remaining of the esophagus is connected to the trachea. This is the most common and easiest to treat types. When we heard this it felt like an elephant had been lifted off our chests. He was also hopeful that he could repair this in one surgery, though he did warn us there were other things we may face in the future, but he was very optimistic about our potential outcome.

He went on to explain that with tracheoesophageal fistulas you are more prone to other abnormalities in certain other areas of the body, and there is the anagram VACTERL to help them look. V: vertebral A: anorectal C: cardiac T/E: tracheoesophageal fistula R: Renal L: limb. We learned all of the horrible things he was at risk for like not having developed an anus, or a whole slew of cardiac abnormalities, or malformed kidneys… Our son had only 3 letters from the VACTERL: T/E and L. Obviously he has a tracheoesophageal fistula, but for limb what he has is his left thumb has very small bones in it, and the doctors are not certain he will have much function out of it— which the neonatologist at the first hospital had already made note of.

A plastic surgeon met with us and he told us that he isn’t even going to look at it for another year. If he has some function out of it they will leave it be, and if not they may move his index finger down to his thumb spot so he will have an opposable appendage. It just is not something we are concerned about at this time. As it is they can’t really evaluate it until they see him use it. In a year when we might be facing another surgery it will be more pertinent, but for now we were thankful that was the only other issue he was facing.

After we learned all of this he informed us that our son’s surgery was booked for the next day (Tuesday October 28th) at 7:30am. We were so happy, scared, and excited at the same time. He told us that (assuming everything went text book) the plan was: After surgery he would have a chest tube in place, and he would still be intubated. They would keep him intubated for as long as he needed, because they have the ability to see how much he is breathing on his own over the machine. The chest tube would be closely monitored for 7-10 days for drainage and if there was no abnormal drainage they would preform a barium swallow study. This is a test where they use contrast to see what is swallowed and where it goes to make sure the connection is good. If that came back good they would then place a feeding tube and administer bolus tube feedings and make sure there still was no leakage at the sutures by monitoring the chest tube. If that looks good they would pull the chest tube, and then it would be a waiting game for recovery and getting him to feed and nurse. We are looking at a NICU stay of 2-4 weeks, but potentially longer.

After this amazing news, we updated our families and friends and then we did what we had been dying to do since he was born, which was spending time with him. We spent the evening with our son; changed his diaper, and just sat with him. We left around 11pm, and would be back at the hospital at 6 the next morning. Our journey is just beginning.

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