William’s First Bath at Home

Everyone got in on the fun of giving William his first bath!  In the NICU they suggested that we try a swaddle bath to help him feel comfy in the tub before just going for a regular bath.  The swaddle bath helps them both stay warm and feel more grounded…I sure wish I knew about this with both of the kiddos for the first few baths.  It was pretty fancy, we gave him about 5-6 swaddle baths each time letting him get used to the water and then loosening the blanket.  He loved them and we never had the screaming bath…until it was time to get out!

William Comes Home

Mike and I have probably never been more nervous than we were on Tuesday morning the day of William’s discharge, if he could remain free of any Brady’s.  That morning we both started off a bit frazzled as Mike overslept his alarm and didn’t make it to William’s 5:30 feeding.  He felt terrible, but honestly who could blame him we had all been operating on far too little sleep and high stress.  I got up grabbed a quick breakfast and was out the door with Kathy.  At this point William still had not had a Brady and I wanted to make sure I was there for the morning rounds the doctor did.  If all went well his doctor had told us we would be discharged between 11-12. 

I got there and could hardly stop staring at the monitors while I nursed the little guy and started to get stuff in order for him to go home, if he was coming home.  The doctor came in and told me it was discharge day and had the nurses start to fill out the appropriate paperwork.  I called Mike and gave him a heads up that we were getting out sooner than later and he needed to wrap things up at work and come to meet us.  Then I called the Grandma’s and told them they could finally tell the kiddos that their baby brother was coming home.  Up to this point we didn’t want to tell them and then have to tell them the opposite if something had happened.

I asked if I could see the lactation specialist just to run a few questions about my plan with nursing and transitioning to bottle feeding.  When she came in she did the best thing anyone had done all day, she finally turned off his monitors and said “you’re going home, he is fine.”  Mike, who had arrived while she and I were talking, and I were both so relieved.  It almost felt like a dream that it was really going to happen.  We signed a few papers, received our discharge instructions and then we were on our way out. 

The kiddos were absolutely elated to finally meet and get to touch William.  Their excitement was indescribable and it felt amazing to finally see the 3 of them together.  For as many days as we had to get things ready for his arrival, it was still semi chaos once it actually happened.  We hadn’t put the car seat base in (again we didn’t want to jinx anything) so when we all got to the car, Mike was scrambling to get everyone’s seat buckled in.  The kiddos were very patient and after we all got buckled in and started our drive home with 3 car seats in the back.  Mike and I kept saying “can you believe it” the whole time we drove home.  

When we got home one of the first things we did was take a picture out side in front of our house.  We then got inside and got lunch ready and the kids couldn’t wait to hold William.  The rest of the day feels like a bit of a blur.  I snuck a nap in with William and Elin and grandma Nancy headed to the airport that afternoon.  We then had dinner and it was time for bed.  It was a lot of work with everyone home, but it was also much less chaotic without having to worry about going back and forth to the hospital. 

On Thursday William was totally off of his bottles and was rocking it.  I was excited to be able to ease up on the pumping bit as well. He was rocking it and I was hopeful his weight would be up at his doctor appoint the next day.

On Friday we got the reassurance that we needed that William was doing great in his feedings.  He was up to 7 lbs and 7 oz and was now 2 weeks old.  What a quick 2 weeks that was!

Coke Announcement

William made Coca Cola’s weekly announcement publication.  Mike got emails back from Coke employees around the country, some he had never even met.  Pretty cool, and we still smile when we talk about this story!

William’s NICU Stay Part 2—Mom Out of the Hospital

7/25/2014

We had done William’s 11:30 feeding where they told me that the little guy had gained 100 grams (normal 30-50) It was the confidence boost we all needed after leaving the hospital that with his feeding/weight gaining he was on the right track and was rocking it.  That morning Thomas and Elin woke up with me at 5:30 to go pump.  It was pretty cute even thought we were all exhausted….we all pumped then crawled back into bed and slept again for another hour.  Mike went in and did the 5:30 and the 8:30 feedings and then headed into the office for a bit.  I got to wake up with the kiddos and have breakfast and play before heading to the hospital for the 11:30 and 2:30 feedings.  Mike came and met me for the 2:30 feeding and some snuggles.  When we were done holding William we headed over to the grocery store before heading home for dinner.  Grandma Nancy went and did the 5:30 and 8:30 feedings and then Grandma Kathy and I did the 11:30 feeding.

7/26/2014  On Saturday morning Mike and I had a date for a CPR class specifically for families with babies in the NICU.  With William continuing to have a Brady here and there I wanted a refresher and Mike had never taken a formal class on infant CPR.  After we did William’s 8:30 feeding we headed over to our class.  When we finished class we grabbed a quick snack and then did William’s 11:30 feeding before we met the kiddos for lunch!  We also took the first picture of the 5 of us together as a family. Then Mike headed home with the kiddos for naps and Grandma Nancy and I did the 2:30 feeding before stopping at the store for a few William things and heading home for dinner. Thomas was really starting to ask questions about exactly why William couldn’t come home.  So we took a couple pictures specifically of his wires and also the machines that monitored his heart and breathing rate.

7/27/2014 Sunday Mike went over and did William’s 5:30 and 8:30 feedings going for a bike ride in between.  I went in and did his 11:30 and 2:30 feedings and then Grandma Kathy went and did his 5:30 feeding before I headed back and did his 8:30 and 11:30 feedings.  

7/28/2014  William failed his car seat test last night.  In the test he has to maintain his oxygen levels and not have a Brady while in the seat.  He didn’t have a Brady but he did have a little big of a dip in his breathing so they decided it was enough that they wanted to see him repeat it again on Monday night before ok-ing him to come home in his car seat on Tuesday. 

Monday the 28th I swear we all sat on edge wondering if William would make it through day 4 without a Brady….he was so close yet on slip would set his count back to another 5 days.  He continued to rock it and after he passed his car seat test on.  I checked in on Tuesday morning when I woke up to pump and he had passed…and still hadn’t had a Brady.  We were so close to getting him home with us all!

William’s NICU Stay Part 1 and Mom in the Hospital

7/18/2014

After Mike left to go get Thomas and Elin and get them to bed and settled in I went back to see William at 8:30.  He was still doing about the same, when he would breathe he made an audible noise and you could see his tiny little body working so hard.  It was so excruciatingly difficult to see him working like that and not scoop him up and put him on my chest and love on him,telling both him and myself that everything would be ok.  There were a lot of tears, floods of tears and then there were moments that I was calm and I could hold it together.  I was still on the magnesium so my nurse needed to stay with me my whole visit, so it was short, I don’t know exactly how long I was there but it was only 10-15 minutes.  Overall William was doing about the same and only time was going to tell if he was going to head in a good or bad direction.  When the nurses or anyone else would touch him he would get really upset, but thankfully my voice and touch helped him calm down.  It was the small bit of peace I had that my presence was making him feel better and I was helping him out.  I felt so utterly helpless in every single way, to my baby in the NICU, to my babies at home who were worried and scared as well and to Mike who was slammed someplace in the middle.  Mike and I had just started the biggest juggling act we had ever come up against.

7/19/2014 

The night William was born, although he wasn’t eating, I had to start the task of pumping the colostrum and getting my new supply of milk to come in.  I started the long task of pumping, hand expressing simulating what William should have been doing, had he have not been in the NICU.  I knew it was very important for him to get the colostrum to help his little body and so I got after it.  Going back a bit I had been warned by lactation that the magnesium that I was given while in labor and the 18 hours after delivering William would start to affect my milk supply.  I hadn’t noticed a change yet, but I wanted to be on top of it and keep getting as much milk as I could before the drop happened. When I woke up at 2:30 a.m. to pump I called down to the NICU to check in on William and he was still holding his own and not on a ventilator.  That was a great sign, I was so excited for us all and hopeful that we were moving in a positive direction.  I was also being monitored with my oxygen levels and after the pulse oximeter kept alarming (they also did vitals every hour that first night) at 3:30 I too went on oxygen.  I started to have some congestion and crackling in my lungs and it was the first time I actually thought William and I were really being affected by the use of the magnesium, a side effect that I was not completely aware of and have since struggled a lot to deal with how I felt my being on magnesium affected him.  It was heart wrenching to know that this medication (which I needed to not have a stroke or seizure) had possibly set both of us back further.   

At 5:15 a.m. I went down and got to sit with W for another 15 minutes and his nurse told me that he had started going down on his oxygen level.  He had another set of chest x-rays and a blood sugar check.  Leaving him was horrible as I again had only been able to be with him for about 10-15 minutes but my main goal for the morning was to get back and get off the Magnesium so I could be down with him as much as I wanted.

At 8:30 a.m. my doctor came in and we touched base on my medication and getting off the magnesium. She oked all the mag. to be stopped so I got unhooked from all my tubes, epidural, oxygen, and IV.  I now could go and be with William with the frequent check ins with my nurses for my blood pressure and medications .

Saturday at 11:30 he was really starting to rock it and he was down to 5% oxygen.  The goal was to get him down to room air as he is ready.  They also wanted 1 more day of low stimulation as they waited for him to what they called “direesing”  (shed all the extra water he was holding onto), as they said when he did that it will be the sign that his body is turning itself on, and his organs would be starting to rid his body of the extra fluid.  They moved him to an enclosed isolate to remove extra noise and stimulation because they could tell (by his vitals) that the extra stimulation would upset him it is making him mad. His nurse called in another nurse to help, this nurse who’s name was Missy, ended up being a hero to me.  As our other nurse was trying to figure out how to do this, Missy said “mom is here she can hold him.”  The other nurse didn’t know if I could stand up and hold him and I basically said I would do anything I needed to do to hold him, pain or not.  So they handed him over to me, switched out his bed and snapped a quick picture.  It went too quickly, but I was soo excited by the fact that when I talked in his ear he didn’t once loose his happy vitals. 

The doctor had also decided that it was ok to start feeding him via tube breast milk to see if he tolerated it.  They started him off with 5 mL, a super small amount and while they did that I gave him colostrum on the paci.  As soon as the milk got to his belly feed and I gave him the paci with colostrum on it…started to do lip movements as food hit his tummy.  At this point my milk production was non existent, I was pumping for 15 minutes and getting nothing and then I would hand express out a drop or two here, lucky if I could get 1 mL.  It was so frustrating, and I was grateful the lactation consultant had warned me about it.  Warning or not, when you have had milk (I had just slightly “weaned” Elin a week before W was born) and never struggled to get it to come not seeing anything come out was a bit scary.  The no milk could last up to 5 days and some moms say they have never been able to get the milk back after Mag, boo! 

Mike and the kiddos came up to see me, it was sooo good to see them finally after 2 long days.  Thomas carried in a vase of beautiful bright sunflowers and Elin had a balloon and a smile on her face.  I was a bundle of emotions and honestly it was so bittersweet to see them but not to have William with us.  We tried to explain it as simply that we could that he was hanging out with the other babies down in the nursery.  T asked more questions and was ok with the fact that the doctors and nurses were helping him to breathe better.  After we got all that out of the way, we got to have lunch and snuggle and it was much needed by us all.  Thomas was very concerned about my big cut.  Both he and Elin kept wanting to see it and had a bit of a hard time remembering that they couldn’t jump on my belly.  I had to keep explaining that the doctors didn’t mean to hurt me, but that I wanted to have the cut so William could come out of my belly.  His little brain couldn’t understand why/how I was that hurt and it was so sad for him.  After we kept talking about it and with lots of reassurance that Mommy was ok, he finally was able to move past it. 

When 2:15 hit the kiddos and Mike headed home for naptime, and I went back down to be with W.  Ugh, wanting to be 2 places at once is the hardest cruelest thing as a mother for me.  T and E seemed to be doing pretty well and Mike was hanging in there too. Thankfully the novelty of getting to spend all this time with Daddy doing awesome park and lunch adventures hadn’t worn off.  Mike had a massive juggling act and was holding a lot of weight on his shoulders.  After he took the kiddos to eat and to burn some energy at the park he started the trek home.  Elin fell asleep so he decided to drop them off at my friend Anna’s house and then he ran back to pick up my car and see William.  He had yet to see him as he couldn’t leave me in the room with the kiddos on my own.   He got their right before 5:30 and I was already off to meet W so he met up with us later.  That was one thing about W being in the NICU, if you were not there at his scheduled touch time the nurses would go ahead and do everything for you, as they needed to stay on a schedule.  With him having such strict touching rules, I was not letting anything hinder my time to get my hands on him and let him know that we were there.  We sat with William for awhile and then headed back to my room so he could help me shower before he needed to get home to take T and E home and get them to bed. 

That night after talking to the doctor he allowed me to have 15 minutes to hold William “as long as he tolerated it.”  It was hard not to be soo incredibly irritated at these doctors that were telling me snuggling my baby would upset him, in fact I was so frusterated.  I was respectful but I also was pushing to hold him as I knew the benefits and research behind Kangaroo care, they were also posted all over the NICU and in the handouts they gave us.  So when I finally got to really snuggle my baby there were no words for what it felt like.  I was scared because he felt so little against my skin and he was still all hooked up to tubes and wires.  I was content and overjoyed as I had been longing to hold him and reassure him life outside my belly was an ok place to be.  He also got his feeding while I was holding him so I snuggle him into my breast as close as I could.  It was the first time I got to feel his little body against my chest and although he was all hooked up, he felt like he belonged there and he snuggled right in.  With the tube in his mouth he was still unable to latch and really wasn’t that interested in nursing at all.  I was overwhelmed with emotions and handing him back over to go in the isolate was so incredibly hard.   I wanted to snuggle like that for the rest of the night, but again had to follow the doctors orders (and rightfully so I was afraid that what if my holding him would hurt him).  He overall was rocking it and was still on the C-PAP but was off the extra oxygen support.  They explained that they wanted him to rest up all night and be really comfortable with his breathing because in the morning they would probably trial him on the nasal cannula and oxygen.  I gave my little guy a quick pep talk and then begrudgingly put him back in his isolette.  I then headed back to my room for my pumping ritual and to try to get some rest before my 11:30 p.m. visit.  The really fantastic thing about the having to leave him was that he was mostly sleeping the whole time he was there, if he would have been awake more often I think it would have been much harder to not be there with him. 

At 11:30 I didn’t get to snuggle him but I did get to comfort him through 7 heel sticks for his bilirubin levels to be checked.  Thankfully the tough little guy kept drinking his milk I was giving him via syringe and he hardly noticed the pokes…I hung in there too although I wasn’t going to let the nurse do many more as she already had 1 vial of blood, did she really need 2? UGH!   After he had his pokes he then got to have his feeding and stayed with him a little longer before heading back to the room.  I was still pumping/hand expressing very little and I wanted to try to get the 8 mL he had just been fed…I got 1 mL…that is not a lot at all.  I was literally sucking the drops of milk I could express off with a syringe and saving them like they were gold.  It was a pretty crazy experience as for the last 4 years I have been nursing and never was unable to get anything.  Thankfully between what I had already hand expressed at home (with all 3 kids I would hand express a few ounces and keep it frozen from 32 weeks pregnant on, just in case) and what I had pumped in labor and delivery we were able to get by with my breast milk and we didn’t need to supplement.  My night nurse that night was so sweet she went and got me 2 turkey sandwiches and told me to eat one at midnight and one at 5 a.m. she also had me drink 2 large jugs of water, she was convinced that this would help increase my milk, at that point I was willing to try anything and so I did it.

7/20/2014

When I woke up at 2:30 a.m. I skipped his touch time and just pumped in the room, I was up to 3 mL but it was the start of my milk coming back in.  I was so relieved.  That morning at his 5:30 touch time nothing was new.  At 7:30 the doctor came doing her morning rounds and said that today he was going to come off C-PAP to the nasal cannula, he was going to go off antibiotics because there was no infection present that they sent away on the culture, and that she wanted him to start nipple feeds by bottle or beast to increase his breast milk intake and decrease his IV fluids.  She also said that at this point he was able to be held as he tolerated it.  It was the news that Mike and I had been longing to hear, maybe me moreso than him?!

So for his 8:30 feeding we got after it., I was so excited to hold him and snuggle. I also got to feed him his first 20 mL bottle and without thinking twice about it he pounded the whole thing.  I told the nurse I didn’t want her to remove the feeding tube for fear that if he didn’t nurse/bottle feed he would again gag like he had the night before when they had to reinsert the tube. After that I let him to try nurse which was not successful as he still had the tub, but I was happy he at least had bottle fed.  After he ate we got to snuggle and we got our morning cuddles and a quick tan on.  We had been so blessed with getting our “room” next to the window, so every morning from sun up until about 11:15 we had sunlight and we would cuddle skin to skin while we got William some sunshine to help his body break down the bilirubin.  We wanted to try to avoid him being under the lights if possible so we could continue to hold and cuddle him.  I stayed down with him until his 11:30 touch time, fed him, snuggled and then headed to the room to see Mike and the big kids. 

We ordered lunch and watched Frozen in the room.  I was feeling pretty good and moving a little more comfortably which was very nice.  My friends Anna and Kami had stopped over to see me and while they were there, Mike got to run down and see William quick.  It was a quick visit as I needed to be back for William’s 2:30 touch time and before we knew it our time was up.  I went down did William’s touch time stuff (temperature, diaper change, and feeding) and then snuggled for a bit.  Then I snuck back to my room to pump and to take a quick nap.  At 5:30 Grandma Kathy, who drove down from Woodbury to help us out, joined me and got to meet William.  We stayed with William for a bit then she headed to the house to switch off with Mike who came back over for William’s 8:30 feeding/touch time and he got to hold/snuggle him for the first time.   He had been doing a great job with his bottle feedings and even with the increased volume he was able to continue to take all without being syringe/gavage fed.  That was a real blessing, he was so close to getting the NG tube out.

Sunday night was a hard night for me emotionally.  I had been on my feet a lot and was exhausted as I had also walked back and forth from seeing William many times (my day shift nurse was pretty absent and if I called for help she didn’t show up before I needed to leave).  Not only that but I also was not aware that we were only allowed to hold William during his “touch times.”  Sooo…after I had forgotten my pumping stuff at 5:30 I left to walk back down to get it and then was going to go back and hold him longer…I was then informed I couldn’t.  Talk about devastating…I tell you what that night I broke, I was physically exhausted and so tired from not sleeping ever (if I wasn’t with William I was pumping or trying to eat, checking in with the other kiddos or Mike or catching an occasional check in with someone else-no lie I got less rest while I was in the hospital than I did when I got home).  So I was exhausted and then felt like I was not able to be a good Mom to anyone at the moment, which broke my heart.  I was being torn in so many directions and I was just overwhelmed with my inability to really do anything other than be told what to do.  Mike had just gotten there thankfully and helped talk me down so that we could head down and see William again.  When I got down there holding and feeding W made everything again feel worth it, even though I was an emotional exhausted hormonal mess.  Mike got to hold William for the first time that night. William looked so so tiny on his Daddy’s chest.  After we got our snuggles in, Mike headed back to help me shower and get ready for the night.  Right as I was getting out of the shower our phone rang and it was the nurses letting us know that William needed his IV changed, so we headed back down to help comfort him through the procedure.  I wanted to make sure that as long as we were there we were trying to help our little guy through any of the owies he had to get.  We got down there and they were ready to go, I comforted William and thankfully he was only cried for a few seconds, poor guy!  Then it was time for kisses again and me letting him know I’d be back in another hour to feed and snuggle him.  He was being such a tough little guy and already in his life he had had so much pain and over come so much.  All the other babies in the unit had battles as well and many had had much further to come than W.  One of the babies on our unit had been born at 23 weeks 6 days (she was 14 oz) and was going on being in the NICU for 4 months…! Such an amazing place a NICU is, the medicine and ability to keep these little babies alive and thriving is truly a gift!  We know our family is grateful and know William is here because of it.

With him off of the oxygen our focus became getting him discharged from the hospital. With that and his lack of success in the couple times I tried nursing I had decided that I would continue to pump and would only bottle feed him so we could get out of there.  Pretty sure the lactation consultant thought I was nuts especially with my history of SLP/feeding and being a nursing mom of over 4 years.  She and I both knew that bottle feeding is easier and that to get discharged he needed to be taking all his feedings via breast or bottle.  I was confident I could get him nursing at home, I just wanted him home, sooner than later.   It was a tough and emotional decision, but Mike and I talked about it and we knew it was only temporary, so we were both on board.  It felt like with him moving in the right direction and being off all the breathing support we were going to be going home sooner than later.  Us being discharged together on Tuesday felt reasonable if he could just keep rocking his bottle feedings.  Mike and I were both feeling so encouraged that we had made it over this hump!

7/21/2014

When I got down to his 5:30 a.m feeding I was informed that over the night he had had his first bradicardia or “brady” as they called him.  We talked about what it actually was and that on this occasion when William stopped breathing for 20 seconds the nurse actually had to stimulate him by touching him to remind him to breathe again.  These Brady’s are technically apnea of prematurity and it  is a condition caused by the immature nervous and muscular systems “forgetting” to breathe.  The doctors and nurses assured us that this meant there was nothing wrong with his brain, but that he just needed a bit more time to develop and outgrow this, as normally he would still be in my belly and when he forgot to breathe my body would cover him.  ***My brain clicked and this was one of the things they had been checking weekly at our biophysical profile ultrasounds, was he practicing breathing…they wanted to see him take 5-10 breaths to pass the test.*** This was a game changer as once a baby does this the rule is they stay for 5 days to make sure they have no more brady episodes.  If they are 5 days brady free they feel, and statistics/research shows, that their brain has developed the ability for them to remember to breath on their own.  Let’s just say both Mike and I were very glad that our little guy was on monitors and when he did stop breathing there was someone there to remind him.  This continues to be my “maybe this is why he was in the NICU” thought.  Had we have not been there our whole worlds could have changed for the worse as when he stopped breathing it was very very hard to tell…and he did this here and there while laying on my chest typically while going into our out of a deep sleep…it was so so scary. 

While I was a little discouraged by the Brady news and the reality that now the earliest William would be going home would be Friday, it did give me the opportunity to shake the previous nights thought of only bottle feeding him.  My nurse on Monday morning was so sweet, she was the one that unhooked my guy from most of his tubes.  I was very nervous about them pulling his nasogastric tube (that had been in his mouth because his nose had the C-PAP or nasal cannula in it).  The one time that they did do that and he didn’t nurse well, they then had to put the tube back in and he gagged very forcefully, I think it is my background again, but gagging and any food/feeding aversion is just such a scary thought for me!  Anyway she was very confident in him and she said he’d be fine and pulled it out.  He then drank his whole bottle and she said “let him nurse if he wants to.”  Without the tub in his mouth the minute I put him to my breast he latched and nursed for 10 minutes, it was the start of our journey together.  I was again so supposed and he again proved my thoughts wrong as I had been worried he would need to learn to nurse.   What a difference than my previous two babies had been.  I was so proud of him and it helped me shake my nerves about getting him out of the NICU.

On Monday morning before his 11:30 feeding/touch time, Grandma Nancy snuck back to see both of us for the first time.  I can only imagine by what my parents have told me and also thinking about what it would be like for me if this was Elin, but it was a relief for my mom to lay eyes and her hands on me.  Guess W and I gave everyone quite the scare!  After William ate and nursed we went and met up with Thomas, Elin, Mike and Nana Kathy.  We had lunch and got some walking in before I had to head back be with William at 2:30. 

Mike came with me to this feeding and then we went back to my room so I could meet with my doctor.  At this point my blood pressure still hadn’t been coming and was pretty high (160s/110s)  She also wanted me up and walking more and sleeping/resting as I had started to swell and retain more fluids.  I was very frustrated that my blood pressure at this point was being such a bear and not cooperating. 

There was a no using the phone policy in the NICU but at home Thomas the big brother was starting to crumble, wanting to see his brother.  With William being tube free we asked the nurse if we could have about 5 minutes of privacy, wink wink!  We called the kiddos on Facetime and for the first time they got to see their brother not in just pictures, which we had also been censoring as the tube pictures were pretty alarming to us as adults and we didn’t want them to be afraid.  The picture below on the bottom left is one of my favorites as it is when they finally saw William for real.  The picture on the right shows the plastic bag policy that the NICU had and why most of our NICU pictures are blurry.  All outside the unit items had to be put into plastic bags to help eliminate germs. 

After Mike got more snuggles in with William at 5:30 he headed home to be with the big kids and then after dinner Grandma Nancy and Grandma Kathy headed back up to be with me, Mike had given them strict orders to get me to feed/snuggle William and then get to bed/rest.  They got me back to my room about 10 p.m. so I could sneak an hour of sleep in before I had to get back for his 11:30 feeding. 

7/22/2014

Tuesday morning William at 5 a.m. was tube free when they removed his IV.  He now only had his monitors on checking his heartbeat and his breathing rate, they also removed the pulse oximeter as he had kept his oxygen saturation at 100% for the last 2 days.  It made holding him and feeding his soo much easier, we had to be so careful with his little hand and the IV as his skin and veins were so thin/tiny.   Although they had him taped up pretty well, it was still something they watched very carefully as they didn’t want it to damage his vein and I didn’t want him to have to get repoked when he was soo close to having it taken out.  

That morning Mike came up to do some morning snuggles in the sunshine with us.  William’s bilirubin levels had finally peaked and this mornings blood draw showed that his level had started to fall.  So the doctors said unless he showed increased signs of jaundice he would have one more billi check the next morning and if they kept falling he should be in the clear and his morning bili checks would be done…awesome…another step in the right direction and less pokes for him!

Thomas and Elin went to the pool with the Grandma’s before they went home to have lunch and take naps.  This was the day that I was suppose to get discharged, 4 days after a c section, however after we talked to my doctor that afternoon she told us she was keeping me admitted for at least another night.  She was going to switch my medications and we were going to see if that along with walking more would get my blood pressure down.  It was a bittersweet thing, although I got to stay with William, I was so missing my house, my kids, Stelly and the cats and my life in general. 

So instead of me being discharged the kiddos came back up to the hospital to see me and have dinner.  The silver lining was that their nurse Betty had offered to do a “drive by” for the kids.  She took William out behind the front desk and for the first time they got to see William live and in person!  Thomas had the biggest smile on his face and was soo excited.  Elin didn’t know just what to think. We went down and had some dinner and watched the kiddos play in the open sitting area.  This was the first day that I had been outside since going into the hospital on Wednesday.  The heat surprised me as I had been in a climate controlled air conditioning for 6 days.  After dinner and some more snuggles back in the room it was time to say goodbye to the kiddos.  So hard, they were both exhausted and both were ready for “mommy’s big cut to be all gone.”   Both of their worlds had been so rocked…they were doing well with the Grandma’s but it was still just different having Mommy gone, William here but not, and Daddy going back and forth to the hospital.  Tuesday night was the night that we really all were just done and over our current situation.  When they left I didn’t have too much time to think about things because we left and I walked into the NICU with Nana Kathy.

7/23/2014

On Wednesday life was pretty much the same in the NICU. I went down with William at 5:30 a.m. and he had another brady that night but again didn’t need to be stimulated to remember to breathe. It was the same thing, he was in a deep sleep and while there he forgot to breathe, bummer now his discharge date was Tuesday. Other than that he was doing great. He had gained weight again and was rocking both nursing and bottle feedings. He had everything else in place he just needed to remember to breathe and he would get to come home. 

William’s bilirubin level had dropped again, so he was all done getting blood draws in the morning.  Yahooo, such a relief for us both, as his little feet had battle wounds all over them.  We snuggled in the sunshine and waited for M to come meet us.  Mike really wanted to come in and meet with me and my doctor when she came to see me, as he was getting frustrated with the current situation of waiting for me to get better, but not.  So anyway the doctor came and things were still the same with my blood pressure, she again increased my medication.  Between yesterday and today I had lost 6 lbs so they were hopeful that the excess fluid was beginning to leave my body and that between my body and the medication things were starting to kick in and go in the right direction.  My blood pressure was still high so she again raised the medications dose and told me to keep walking as much as I could.  That afternoon after we fed and snuggled William, Mike and I went to a lunch date at the hospital cafeteria.  It was a fun little break from reality and nice to just talk to him about how we were both feeling, how William was doing, and how Thomas and Elin were doing at home.  Both our lives were so split down the middle and we had hardly had a second to breath and connect with one another.  After our lunch date we headed back for William’s 2:30 touch time and his first bath.  William was not a fan of being cold and between the nurse and I we got him washed as quickly as we could.  It was funny because Mike was suppose to do a bottle feeding at 2:30, but after William’s crying he giggled and said “you’re going to feed him right?”  I said “can I?”  To which he replied “yes, I knew once he started to cry there was no way you weren’t going to snuggle him like crazy!”  He knows me all too well!  Once we were done snuggling and taking pictures Mike got me back up to my room, helped me shower and then I headed back to be with William and he went home to help with T and E.  Wednesday night it was the same routine for dinner with the big kiddos, then M took them home and the Grandmas got to stay and get snuggles in. 

7/24/2014

I was pretty sure that because my blood pressure had finally started to come down I would be getting discharged.  It was so so bittersweet.  I didn’t know how I would be able to walk out that hospital door and leave William there, even thought he was in the best care possible, it was just so excruciating to think about.  Even as I type this almost 2 months later the emotions behind that day have tears rolling down my eyes.  I held him that morning and I sobbed, I did not want to put his little body down.  Somehow I felt that if I held him and didn’t let go it would help him remember that I was there even if I wasn’t.  I was so worried about him being alone and waking up afraid without us there.  The one blessing about him being early is that he was very very sleepy as he was working on growing, so his awake time was very limited.   That morning Mike came over for the 8:30 feeding and after meeting with my doctor we had confirmation that I was getting discharged as long as my BPs stayed down through that afternoon.  

After a great night nursing and feeding William was up 10 grams.  I finally felt like I had a handle on how much he was able to nurse vs bottle feed and we had a great routine down.  His 11:30p.m. and 5:30 a.m. nursing sessions went very smooth as did his 2:30 a.m. bottle fed 50mL (1.75 oz).  I was super proud of my boobs and my ability to know what they were producing.  Before and after William nursed we did a weight check and I was able to guess within 1 mL of what he was able to transfer via breast, which was 45 mL.  I was so excited with this because in the NICU the numbers matter and knowing that he was nursing for only 7-10 minutes sometimes meant that the nurses were concerned he wasn’t transferring much via breast.  However, they did not know how my milk supply was or how my breast/s worked.  Anyway, that confirmation gave me a little confidence boost in a very stressful nursing environment!  I would nurse him for 7-15 minutes (however long he stayed latched) then I would burp him and pump the rest of that breast and the other side.  I was pumping equally on both sides, so that way I knew how much he had nursed and I then fed him the rest I had pumped via bottle. 

William had another Brady that morning while on my chest and so his count again started.  That is/was the scariest thing about his Brady’s, you could not feel them, tell, until he had not been breathing for a few seconds and then he would take a big gasping breath when he finally remembered.  The good thing about this brady was that he remembered to breath on his own, so he was making changes and developing the skill to remember breathing!

Mike got there that morning and let me snuggle William until after the 11:30 feeding, then we grabbed lunch and got everything packed up for me to head home.  I told Mike he had to take all of our flowers/balloons and stuff to the car without me, because I didn’t know how I would leave with them and not William.  Then I was scared someone would say something to me and I wouldn’t know how to answer. 

My nurse that day was, I am certain, was assigned to me for a reason.  She herself had had a daughter in the NICU for 20 days and she knew exactly what it felt like to leave your newborn at the hospital and what my heart was going through.  She told me to cry, let all the emotions out today, because today would be excruciatingly hard, one of the hardest days of my life.  Well she sure had that right.  She then said tomorrow it would be easier, she didn’t know how/why, but it always was.  She hugged me and got me from a place of I know exactly where you are and I have been there, and you will somehow get through this, you will.  It was the message I needed to hear and it gave me the courage to keep putting one foot in front of the other and to go down to see my guy as an inpatient one last time. 

I talked to a very few people in the days after W was born, mostly because I couldn’t explain over and over my sadness and feelings.  Thankfully I never felt unsupported and in fact I felt more love through all the phone calls and text messages from near and far.  Tiffany who has been there through thick and thin sent me this message and let me know that if I needed and “over the phone ugly cry, she was my girl.”  That made me cry in the hospital and you better believe I called her and ugly cried when we got home!  After we got everything squared away we went down to be with William.  The tears on this Thursday did not stop.   The pain was intense and hurt so incredibly bad.  My little sweet boy was going to be so far from his parents and home and I didn’t know how I would find the strength to leave, although I knew at home Thomas and Elin had also started to crumble and needed me. 

After we fed and snuggled William, we hugged and kissed him good bye.  I told him I would be back that night at 11:30 p.m. to see him and that I loved him more than he would ever know…and to keep breathing DARN IT…because we wanted him HOME!

Then holding Mike’s hand I walked out of that hospital without my newborn baby.  I was crushed and I cried the entire way to Target where we had to pick up my prescriptions, a few things that William needed, and grabbed a few toys for the big kids.  I was so excited to get home and so torn because I never wanted to leave without my littlest guy.  I can still remember looking at everyone we drove by or in target and thinking you have no idea how sad I am right now.  It’s that weird state of limbo when you know your world must go on, but you just want to sit down and quit.  After we picked up our stuff and got our prescriptions we headed home…life didn’t stop and it was time for big kid snuggling, dinner and I had to pump again too…

We had a plan worked out so that William was not ever alone too long.  It was very important to me that he had people snuggling him and loving on him a lot.  So when we got home Grandma Nancy headed back up to the hospital to hold him after his feeding.  The grandma’s weren’t feeding him as when he had the bottle he was still needing to be paced a little bit so Mike and I, along with the nurses felt the easiest thing to do was to have them feed him then hand him over to the grandmas to snuggle.  Nana Kathy stayed with Mike and I and made us a wonderful dinner and helped with the kiddos. 

Home felt good and the big kids were excited I was finally there.  After getting hugs and love in, I snuck upstairs and sat in our bedroom and cried that ugly cry Tiff had promised me.   I have to be honest I then had to take my next pain pill and that took the sadness edge off too…It numbed the intense pain and I understood how people could become addicted.  My heart still hurt, but it didn’t hurt with the same intensity.  After we had dinner and the kiddos played outside for a bit it was time for bed.  That night it was hard to get T to sleep as the entire weeks stress came out with lots of emotions and tears.  He was sad and he needed to let it out.  Elin’s came the following night.  Yes they both survived it, but it was a very stressful couple weeks for us all.  Grandma Kathy did the 8:30 snuggles and then came back to get me for the 11:30 feeding/snuggles.  So far William had continued to rock it…he just needed to keep remembering to breathe! 

There’s the first part of our hospital/NICU stay…stay tuned for part 2!

William is Here

At 4:12 p.m. our little boy arrived.  It was a brand new experience for Mike and I being behind the hospital drapes and being told he was about to be born.  They told me I would feel a lot of pressure while they pushed/pulled him out and that I did, for a few seconds it was hard to take a deep breath, but then in no time he was here.  They held him up and Mike peaked over the curtain to check out his bits and announced that we were having a boy.  By the time he looked down at me he already had tears in his eyes, as did I, our family was complete with this little boy.  Instantly our exuberant excitement was a tad clouded by his slightly muffled cries, they were immediate but weak and garbled.As the NICU nurse and respiratory therapist worked to stabilize him, I could see him having retractions (chest going out and sucking in very hard) and them using oxygen.  I instantly knew it wasn’t good and after a few seconds they confirmed that the needed to take him upstairs to the NICU.  Mike and I got to take a few pictures with him, I kissed him and then I sent my 2 boys on their way, while I was still laying open on an operating table.  I sent out a text finally to our families and a few friends that he had been born and that we still didn’t know his name.  At that point we didn’t clue many people in to what exactly was going on, because we didn’t know for sure either.  Mike and I were texting back and forth about what was happening to me and how our little guy was doing.  It was also how we finalized his name.  Both how William was born and the aftermath of his birth were a long ways off from our “plan.”  After they closed me up and brought me to my recovery room it felt like forever before we got the call that they were admitting William to the NICU and that I needed to get up there ASAP to see him and to help Mike make some decisions about his care.  They unlocked my hospital bed and we were off, I don’t think I had any idea what type of condition William was actually in until I saw him.  He looked so tiny in his little radiant warmer, he was already hooked up to a C-PAP (continuous positive airway pressure) machine, had monitors connected to check his body temperature, a pulse oximeter (to check the oxygen in his blood, the cardiopulmonary monitor (breathing and heart rate) and an IV to deliver fluids (they were not allowing him to eat), a tube into his stomach (for eventual feedings and to pull off extra air that was pushed in by the C-PAP machine and antibiotics (because he came early they did not have the results of my group b strep culture back).  There were a lot of tubes and he looked really miserable.  He also was still really struggling to breathe and he had this little grunting whimper that came out with each breath. 

Shortly after Mike and William left and got up to the NICU, William had a huge destat, drop in his major vital signs, where his heart and lungs started to beat and breath slower his body lost oxygen and he turned blue.  He needed to be resuscitated with the oxygen mask and after a few trying seconds all things were ok, but this led doctors to be further concerned about his overall condition.  After they did a chest x ray they saw his lungs were still either a bit immature or that he could have had the early signs of pneumonia.  They also were concerned he had or was going to develop PPHN (persistent pulmonary hypertension of the newborn).  Mike and I were allowed to touch him, but we could not hold him, my heart was shattered.  He was so sick and in this little thing with tubes and all I could think was how scared and confused his little still developing body and brain must be.  We new the first 12 hours were going to be crucial and that the goal of the first night was to keep him off of the ventilator.  Then the next hardest moment happened, or maybe it was the hardest, or maybe it was the start of a collection of unthinkably hard things that were about to come happened, we had to leave our brand new newborn baby who was struggling to breathe, it was now 7:30 ish and the nurses needed to check me out some more and get me settled in a new room.  The mind is a tricky thing, in talking about these first few hours Mike and I feel like they are a bit of a blur, somewhere between our minds helping us forget the trauma and the reality of how scared we both actually were.  At this point most of our family had no clue what had happened and were also scrambling making arrangements to come help and worrying about our little family.  It was so not how we had planned!

After we left William’s side for the first time, Mike and my nurse got me settled back in my room.  My night nurse was soo sweet and she told me she would bring me back for the 8:30 and 5:30 touch times (the schedule set by the NICU for William’s feedings/diaper changes/”touching”) if I could get up and move and if I felt up to it. 

Mike got me settled and after about 10 minutes we kissed said goodbye and he headed home to try to return some normalcy to the kiddos and let Debbie head home after 2 days taking care of our kiddos.  William and I were in good hands, although it is always a bit hard and scary to be alone and feel like your once “normal” life has been split down the middle. 

We called our families and tried to prepare them for the picture they were about to see and update them on William’s condition.   We were all scared and didn’t know what the next few hours or days would bring but we were praying for the best and hoping the outcome would be William coming home sooner than later.

Hospital and Labor

After several days of feeling just sort of off and having consistently high blood pressure readings at home Mike and I decided we should finally check in with the doctor.  My doctor was still on maternity leave until Monday so I called her on call partner and she wanted to see me in the office.  The kiddos and I had planned on going to the zoo that morning, but instead we headed to her office.  When there my blood pressure was a tiny bit lower to a point she was ok with but she wanted to do a non stress test just to make sure the baby was doing ok as well.

At this point everything was routine for me so we went in I got hooked up and the baby looked great.  Then all of a sudden I started to feel worse, like I was starting down the path to passing out.  I hurried up and sent Mike a text message on where I was and that he needed to come because something wasn’t right.  I had Thomas open the door and ask for a nurse and grabbed a fruit leather to eat, hoping it was low blood sugar.  The doctor came in and that is when things got really serious.  She didn’t like that when I felt like I was going to pass out, the baby’s heart rate dropped for close to 2 minutes, it wasn’t really low, but it dropped enough to show something crazy happened.  At that point she felt it was best to admit me to the hospital and get my blood pressure under control again and for constant monitoring.  She said she ideally wanted me there 8 days until I reached 37 weeks, and I immediately started to cry.  I told her that I couldn’t imagine being in the hospital that long and that it would cause me more stress/anxiety than good.  Soo she agreed that if my lab work and 24 hour urine test (best indicator for high blood pressure starting into eclampsia) came back negative she would let me out after a day or so.  By that time Mike was on his way and we met 5 minutes later at the hospital.  I was a pretty big mess for about 5 minutes, because this was the first time in all my pregnancies that with the high blood pressure the baby hadn’t been looking fantastic.  I wasn’t worried about me, I was worried about getting this little boy or girl here and healthy when we had come so far.  Anyway, we got checked in and then Mike took the kids home to get lunch, naps, and get stuff for me.  They came back that night and we watched frozen, had dinner and just relaxed.  My blood pressures at that point still were not fantastic and my headache was still not going away.The plan at that point stayed the same with me seeing my doctor again in the morning.  That morning I also had a maternal fetal medicine doctor come and do an ultrasound.  He said everything looked great with the baby, my fluid levels were good and that the baby measured at 7 lbs 7 oz.  He then made me a bit nervous as he told me that if it was his wife she would be staying in the hospital because the risk of something bad happening was far too great.  It started to become a little more real then that they were not really worried about the baby, they were worried about me.  I too then finally started to worry about myself and have to admit was ready, so ready, to be done being pregnant because I was scared, really scared.  My nurse that morning also admitted that she was very nervous about my blood pressures because at that point they still were not coming down and were in the 150s/high 90s.  My doctor came back and talked to me and explained that it was just a balancing act from here on out, but that she didn’t think I would be going home.  She thought that the next few days would be crucial to see how I was going to handle the increased blood pressures and if they could get them under control while they tried to keep me pregnant until closer to 37 weeks.  Then it happened after my morning medication I had 2 back to back high blood pressures, 174/117 and then 16_/109 my nurse left to call the doctor and came back and said it was time for a baby.  WHAT!!!!!

I asked what to do and who to call and how quick it would happen.  Let’s just say by the time I called Mike, my nurse and a CAN were in the room getting me ready and packing me and my stuff up as I wasn’t allowed to get out of bed.  By the time I called my mom to tell her what was happening I already had my IV started.  They then wheeled me down to labor and delivery and within a half hour of that I had both pitocin and magnesium sulfate started and my water had been broke with an internal monitor to make sure the baby was doing ok and to “slowly” break the water.  Mike still was at home getting the kiddos squared away.  I have to admit it was a lot more of a fire drill than we have ever experienced before. 

When Mike arrived he was ready for baby time…so was I.  I was having steady contractions and I was starting to feel them more.  I started from pretty much 0 cm and 0 percent effaced.  They were hoping because it was my 3rd my body would just kick in and start going on its own…it had a different plan.  At 3:30 I was 3 cm and 50% effaced, so making good progress, by 4:30 contractions 2-3 minutes apart.  I wasn’t dilating as fast as what I hoped as the 2-3 minute contractions were pretty intense, and continuing to get stronger.  Just when they would get into a great pattern and get really intense they would start to spread out.  The nurses would adjust the pitocin down and then we would start the process over.  The pitocin was trying to give me contractions and the magnesium sulfate (which I needed for my blood pressure) was a smooth muscle relaxer that was trying to keep my uterus relaxed.  It was a tough battle and just when the pitocin would get it going and my body would be getting into a good pattern, it seems the mag would then start its job.  It was a long night up and down. 

I was doing really well in the limited movement factor alternating between positions in the bed, bouncing on the ball, walking to the bathroom and being in a rocking chair.   As most of you know I was convinced this 3rd labor was going to be my great labor, I thought I was going to go into labor on my own (which changed to being induced quickly) and that I was not going to have an epidural (as I was very terrified of that after my spinal headache and experience and had been advised not to).  Anyway I felt awesome, I was really in the zone and was powering through all the contractions, felt relaxed and was channeling the intensity and pain well, I was ready to do this.  At 10 p.m. I was about 5 c.m. and still plugging along, I was more uncomfortable, but still feeling mentally tough.  By 1 a.m. I was at 7 c.m. and we thought we should be close to the home stretch, Mike said he was taking my phone away as I was still letting my mom and a few friends know what was going on.  We then flipped into baby name mode and between each contraction we were going over our lists of names, searching for new ones.  It was then about 4 in the morning when Mike went to get his caffeine boost and he came back with this.  William had been one of our top boy names for some time and this sealed the deal for us.  It was pretty crazy, I have to admit I have not seen another share a coke with Will since that night, and I have been looking! 

By 4 a.m. I was exhausted and pretty miserable.  I wanted to get into the water to help myself relax and because I was on the magnesium they would not let me.  I was so frustrated and just done and wanted to meet this baby.  The nurses checked me again and I was now at 8 c.m. and they said that they wanted me to try some pain medication to see if it could take the edge off for me.  I then really got upset because I was wanting to do it without.  After they left Mike and I talked and decided if there was still no more progress after another hour, I would try a round of pain medicine.  6 a.m. came and there was no progress so they gave me a dose of Demerol.  It was a pretty fancy medicine, I could still feel all the contractions but I felt like I was floating on a cloud and they were not as intense, it gave me relief and I was able to rest intermittently for about an hour, hoping that when it was done I would be 10 cm and would be ready to push.

My doctor came in at 7 a.m. with the shift change of nurses and I was still at 8 c.m. and my contractions had again slowed down.  We talked about a plan and my doctor said she was kind of at a loss for what to do, as she was very stumped why my body was reacting the way it was.  We were all frustrated and so we decided to try a different direction to get me the last 2 c.m. and give my body a break from the pitocin.  The doctor begged me to get an epidural and after a lot of tears and convincing me that her girl Victoria would nail it I agreed.  I was so terrified!  Victoria the nurse anesthetist came in and at 9:30 a.m. I got the epidural.  I do have to say she nailed it, it was the most simple epidural I had ever had and it worked almost immediately.  My doctor then came in and gave me cervidil to see if that would help me dilate further.  At this point I was also no longer getting pitocin and the cervidil needed to “work” for 4 hours before I could have more pitocin.  With the epidural and while the cervidil was trying to work I was able to rest.  At that point my contractions were super spread out and not very strong.  At 12:30 p.m. my contractions were non existent and they checked me again and I was 8.5 c.m. and very soft so the doctor thought that maybe I would be able to push William out without contractions or being completely dilated.  She had them turn the pitocin on again to see if we could get more contractions, and after an hour it still didn’t kick my body in.  About 2 p.m. I tried to push without contractions or being more dilated than 8.5 cm and although I was “pushing” the right way he wasn’t coming down.  The doctor then talked to Mike and I very seriously about having a c section.   BOOOO HISSSS….I was defeated, and so so tired!  After I had my emotional meltdown, gave my doctor her warning speech that she was not allowed to let me die on the operating table (I mean come on at this point we all knew my body reacted not the right way to anything and red heads typically bleed more) we all agreed that a c section was the way to go.  By that point I was just ready to be done and meet our little boy or girl…and see Thomas and Elin!  We haven’t talked much about them in this story, but they were having a blast hanging out with “Grandma Debbie” and her daughter Shelby.  They went to the movie Planes Fire and Rescue, had lunch and were playing up a storm.  I was sure they wouldn’t want me to ever stop having this baby!

My nurse anesthetist, Victoria came back in and at 3 p.m. administered the spinal block.  Ishy poo, it made my blood pressure plummet to 80/50 and I felt awful like I was going to pass out.  They came back in and gave me 4 rounds of epinephrine to bump it back up a bit and then we found out that another baby was in distress and I was going to be pushed back from having the c section now to having it “next.”  It gave them time to give me some anti nausea medication and “feel better.”   We also gave Mike’s parents a heads up what was happening and I called my sister in law Molly to tell her so she could tell my mom, who was at her house taking care of my niece Maggie.  I didn’t want her to be alone and find out because I knew she would be so worried about me.  We then waited until they came back to re-administer the second spinal medication.   They were all laughing at me because I wanted to make sure I couldn’t feel my belly so I was pinching myself “just to make sure.”  It was also so crazy because I could see them moving my legs and I couldn’t feel them, it made me want to puke…I stopped looking and asked them to not let me see when these things were happening!

By this point Mike and I were so excited that our long day/night was almost over and we were going to get to meet our little boy or little girl.  We took a quick selfie and off we went to the operating room.