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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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Nearly there!

Our little man has his repeat barium swallow study on Friday. This test shows if there is any leaking around his fistula repair. Thankfully he passed, and that meant he could start oral feedings

Now, I’ve got to be honest. My husband and I had unrealistic expectations for how he would take to the bottle. As vigorously as he had been sucking his pacifier, and as hungry as he had been– we just expected him to suck his bottle down. So, I won’t lie– I was disappointed when he hardly took any bottle at all, especially because surgery started him off with 5ml (a teaspoon). They will raise how much he gets as he tolerates it and learns to nurse.

Now that we’ve had a few days to adjust our thinking I’ve come to accept that it’s just going to take time. We aren’t going to rush this, or be disappointed anymore. He has overcome so much, and this is his last hurdle before we go home! When we took time to remember that babies learn to suck in the first 3 days of life, and our son was 13 days old before he got a bottle, it of course makes sense that he needs some time to learn.

Saturday his nurse got him to take his full 5ml, but he’s still not doing it as ‘gracefully’ as we’d like. Thankfully he did take it, because surgery then felt comfortable removing the chest tube that was positioned near his repair (it was there to pull anything out that leaked out around his repair). They took out his chest tube and that was huge for us! Now we can dress him, and hold him without the fear of hurting him or displacing the tube. We were elated.

We’ve spent the last two days cuddling him, and enjoying being with our son. We don’t want to put him down! We’ve seen some improvement with his bottle since he started them 3 days ago, but we’ve still got a ways to go.

Once he is able to take enough orally that they feel comfortable enough discontinued go his TPN (his IV nutrition), then he needs to be consistently gaining weight. Once he has that it’s just a few things before we go home: can he sit in his car seat for the length of time it takes to get home without his vitals changing, he can transition to sleeping in a crib, and a few other small things.

We would LOVE to be home tomorrow, but we’re really hoping to be home by Thanksgiving. C and I are missing home, and our dog– we’re staying in an extended stay hotel near the hospital, since home is 90 miles away. We don’t feel comfortable going home because it would mean not being at the hospital everyday, so for now we’re staying here.

 

 

 

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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.