James' Birthday in Photos

A gift from our lovely nurse, Lisa. She had worked at St. Mary's in Madison around the time I was born, and also knew Adam's aunt and uncle. Small world! She said we felt like family to her and wanted to make sure James had a memento of his Wisconsin birth. 

Finally got to 'wash' my hair. 

He had a little bruise on his head from the birth and was intubated for just over 24 hours. 

So many lines. This reminds me how far he has come. 

James' Birthday

7 am, July 14. Once the c section was a go ahead, things moved very quickly. My amazing new nurse came on at this time and prepped me. I remember being half passed out, poked and prodded several times as well as signing some papers without having the slightest idea what they said. I think I was so tired, scared, shocked and in pain that my body's way of protecting myself was to block things out. I also wonder if the amount of blood I was losing was enough to make me woozy.

Dressed and ready!

Family of two about to be three

Off to surgery I went and first up was the epidural. They wanted me sitting in a certain position on the surgical table and I couldn't manage it because I kept having contractions. Eventually we compromised and all that I remember is hunching over and leaning against my nurse who was giving me a pep talk, I think to prevent me from passing out in her arms. I wasn't afraid of the epidural, and honestly didn't feel anything, I just really felt like I was going to tip over and just lose it. Once that epidural was in and done, my legs were gone and they slowly laid me down on the table. Instant relief. Instant swarming of people hooking me up to this and that, pricking and poking me to check sensation. It felt like maybe two minutes went by and my doctor was starting the surgery. I could hear clinking and clanking and suction and chatter but couldn't tell what people were saying. It felt very rushed and I don't even think Adam was in the room yet when they started. 

Adam appeared over my left shoulder and I think he was more afraid than I was. I think he tried to hold my left hand, but I remember feeling strapped down and so heavy. Maybe my arms were strapped down? I don't remember. He felt like he couldn't breathe, I think from his mask and just nerves so I'm trying to tell him it's OK and he's trying to calm me and we were just a mess. More clinking and clanking and chatter and suction and I just start to feel nauseous. Then vomit comes. Luckily I turned to the right and puked that way, but in my strapped down and heavy state it was difficult to do. Someone held me a little bucket and I was good to go. I couldn't look to my left at Adam because that kept making me feel sick, so I just looked to the right while Adam was busy trying to breathe and that's the way it went. 

Sometime after 7:38 am I asked, "is he out?" and they said yes. I didn't even know it. No cries, they didn't even hold him up for me to see. All of the excitement leading up to having your baby and there was no 'moment' were I got to see him. I do remember them saying, "Oh, it is a boy" like I had any doubt in my mind. At some point Adam was invited to the adjoining room to see him. He could have been gone for a minute or an hour, I don't know but it felt like an hour to close me up. Adam says that when he came back in they didn't warn him which way to look or not to look so he got to see my "insides and lots of blood." He still is upset about this. 

First apgar score was a 2. No bueno. 

My only real vivid memory of this morning was when James was wheeled by me for our first meeting. We had agreed not to officially name him until we got to see him, just to make sure the name we had picked out 'fit' him. What if he didn't look like a James? 

He was beautiful. Perfect. "He's so big!" I don't know what I expected, but he looked much bigger than what I had anticipated for a preemie baby to be. He also looked exactly how I had pictured him. Adam asked, "What do you think? Is he a James?" and I said yes. They whisked him away to the NICU and Adam went with, only after stopping to show him off quickly to my parents who were waiting just outside. My mom says she has never seen Adam smile so big and look so proud.

The rest of this morning is an absolute blur to me. I was taken to my new room and rolled around and bundled up and poked and and all of that. My favorite game to play is to ask Adam and my parents about that morning; what did I do? What did I say? I have very little memory of it, just glimpses here and there. I do know that the goal was to get the sensation back in my legs enough so that I could get in a wheelchair to go officially meet James. At one point, I remember being totally numb and trying my best to just wiggle my toes. I looked down and my legs were moving around in the bed! What a weird sensation.

At some point, either late morning or early afternoon, I was helped into the wheelchair and wheeled upstairs to the NICU. Again, very foggy memories of this which make me sad because I don't remember much of my first official visit with James. I do remember asking for the trash can and getting sick in his room and then being sent back to my room. Whoops. Great first impression, momma.

First family photo

What a day. We're so blessed and happy to have this little guy in our lives. I only wish I remembered more of it and that I had had that 'moment' when he first came into the world and let out a big, strong cry.

Happy Birthday, James Matthew Hoge. We love you!

Labor story: Triage and "you're having a baby today."

Immediately I'm hooked up to a monitor and told I'm having contractions 2-3 minutes apart. What?! Apparently I wasn't even feeling some of them. We go through my medical history as they don't have any information on me and my OB office wouldn't release my information and chart until the following day. Strike one against my OB doctors.

The triage nurses and doctor on call (Dr. AJ) were very surprised to learn that I hadn't been hospitalized for fluids and hydration following an infection I had in late June (strike two against my OB docs).  They felt I was likely dehydrated not only from that infection but also from being in the sun all week on vacation. No worries, we'll hook you up to some fluids and this will all stop. At least that's what they thought. They also gave me a drug called terbutaline to help stop the contractions. I wasn't dilated at all (from what they could tell, I wasn't a very cooperative patient) but they thought I had thinned out a little.

At this point we were moved to a labor and delivery room, I was given a hot pack for my back and finally got to eat some food. The terbutaline definitely felt like it was working as I thought the contractions had mostly stopped. I think I was given some painkiller for my back pain and Adam and I both dozed off for a few hours.

That evening comes and we decide to catch up on some episodes of Big Brother.  I was told that I was still having contractions, some weak and some strong and that I should mark the ones I was feeling. We got through one or maybe two episodes of our show with me marking contractions every once in awhile, but by the final episode I was in some intense pain.  We didn't finish the episode or even start the final one we had planned to watch because I just couldn't focus on it. This is where I start to forget how things progressed but all I know is that it escalated quickly. It was about 9 pm.

I was told that the terbutaline didn't work and that they were going to try a stronger drug that had less desirable side effects associated with it. They were going to try Magnesium which would make me feel really hot, like my skin was crawling and just very uncomfortable in general. The worst part was they said I would be on it for 24 hours and have to stay in the hospital for at least three days to monitor me. What? We went from being told I was likely dehydrated and just needed some fluids, we'll keep you overnight to you're stuck here and going to be miserable. Also, I couldn't get up to use the bathroom while on the Mag so they were going to insert a catheter. Great.

I don't even remember them pushing the Mag into my IV but suddenly it got hot. So so hot. Off came the gown, the a/c was cranked in my room and ice packs were placed all over me. Still, I was hot. Awful hot. Then they decide to try to get this catheter in me. Should have done it before I was totally miserable because I couldn't relax and it was terribly uncomfortable and then "oops, it's in the wrong hole." SERIOUSLY? Who are these people?! They had to do it again. Success, it's in but catheters are NOT comfortable for the first 45 minutes or so. Constant burning.

Around this point I suddenly felt a gush like I had peed or something, but I knew I hadn't. My first thought was maybe my water broke but I looked down and there was some blood. Not a whole lot, but enough to freak me and Adam out. The nurse was quite calm and reassured me it was likely from being checked earlier in the day, which I believed. Time went on and more gushing sensation, more blood. More panic. I tell Adam to call my parents and tell them they should probably come up. They arrived about 11 pm.
 The nurse was starting to seem a little stressed, especially since she had to help deliver a baby next door since the doctor showed up too late, but still didn't seem to be overly worried about the blood. She had called other nurses in and informed my doctor, but they were just watching me closely.

And the pain. Oh my god. Contractions are for real. I remember telling them they had to give me something for pain, wasn't there anything they could give me for the pain?! Apparently they did give me something that was supposed to help me sleep a little so I dozed in and out of sleep, waking up constantly to the contractions and with a box fan blowing on me because I was still SO HOT. Meanwhile, Adam was freezing to death sleeping in my igloo room. My parents were given the room across the hall to get some sleep in.

The hours go by and I wake up and feel something's not right. "Adam, something just came out of me." We look and there's a huge clot of blood that had come out. Adam said he ran down the hall looking for our nurse, he was so scared. I was so disoriented and tired and in pain that I don't remember it very well but this got the nurse's attention. This happened a couple times, some worse than others and at about 6 am the doctor came in to talk with me. "The drugs didn't work, you're about a centimeter dilated, you're going to have this baby in this hospital today. Probably in six to eight hours."

I was so uncomfortable, emotionally and physically exhausted and had a sense that something was not right because of the bleeding and clots that I told him I wanted a c-section. I also knew that I could not tolerate whatever was happening to me for six to eight more hours. I was drained. I know some moms do it for longer but I just couldn't. I was later told that since my body truly was going in to labor, the magnesium and my body were fighting each other likely causing more discomfort than I should have been in. Good to know because I was in some serious pain. Luckily, he agreed right away to my request for a c-section and said that I would have the surgery in an hour at 7:30 am.

I was shocked. I can't remember if I cried right away or if I was happy this ordeal would be over with but what a strange feeling. I wasn't supposed to meet our son for 10 more weeks, we weren't ready, and I was just told that I was going to see him in one hour. I knew deep down that he was going to be OK, that babies born at 31 weeks have some issues but in general are fine in the grand scheme of things. Let's have this baby.

My Labor Story: off to Wausau

July 13, 2014.

We're in Phillips, Wisconsin visiting the Hoge family. I woke up that morning at about 5 am (after getting up every hour to use the bathroom) in excruciating back pain and was unable to get comfortable in any position. I think I dozed in and out of sleep and at 7 am realized my tummy was cramping every once in awhile and was occasionally painful and then would be fine. I started to check the time every time I felt the tightness and realized it was coming every five minutes or so. This is when I woke Adam and said, "I think I'm having contractions." I don't think he believed me at first, but I didn't even believe myself. How did I know what contractions felt like?

 We continue to time them (still about every five minutes, some four, some eight) as we're looking up early labor signs and what to do if you're in preterm labor. Adam read that I should try and distract myself to see if it went away so I got up and walked a little and brushed my teeth but they were still coming. He began packing our things, as we were planning on leaving for home after breakfast anyways while I called my OB doctor: "Go to the nearest ER and have them check you out." The nearest ER was I think Rhinelander or even Merrill's hospital but they don't even have a birthing unit. We looked to see what was in-network in the area and that brought up Aspirus in Wausua. 1.5 hours away, we can do this.

We said goodbye to Don, brother-in-law to Adam's aunt and uncle and who were were actually staying with, who told me I would be in good hands, that Wausau had a good hospital and that's when the first tears came as it hit me that we were going to a hospital. Not exactly in the plans for that week and I definitely was afraid of what that might mean. Then we dropped Maggie off with the rest of the Hoges and more tears, more good byes and reassurance everything would be OK. Also a good laugh at Adam's cousin Ron who had walked into a ceiling fan earlier that morning and had the biggest bump on a forehead I had ever seen. Luckily he's recovered fine!

Off to Wausau we went and I think I only to Adam to hurry up one time. I called my parents to let them know we were off to the hospital but that I thought everything would be OK. No need to rush up or anything. We get to the ER and I'm sent up to labor and delivery but only after being told "you're tiny for 31 weeks!" If I had to hear that one more time I think I would have punched someone.  To triage we went...

30 weeks pregnant - a week in labor?

Little did I know it would be my last week carrying James in my belly.

Friday was the Fourth of July, and a fun one it was on the boat with my Hoge family (minus hubby who was already in Minnesota) and Marcus' parents who were visiting from Wisconsin. I was feeling pretty good and quite large, just needed a snooze in the late afternoon.

 

My last 'bump' photo; 30 weeks and 1 day

Afternoon nap on the boat

Just noticed my wedding rings are off in the above photo. I decided that day that my rings were starting to feel tight when I was out in the sun, so I left them off at home. Little did I know I was going to forget to put them on the next day before flying to Minnesota and would then be without them for two weeks. Finally got them back a few days ago! All the married folks know that going without your rings on just doesn't feel right.

Saturday, July 5th I fly to Minnesota to join Adam and Maggie in a visit to his family in St. Paul and their lake house just north of the cities. On Sunday we went to a Twins game. It was HOT out but we had a good time and great seats that were close enough to first base to yell profanities at the players. Luckily we had access to an air conditioned area where I could cool off every once in awhile, let my shirt dry out, and chug some water. 

Monday rolls around and I'm really not feeling well. We had planned to go to Mall of America but I really wasn't up for it. Takes a lot to get me not to shop. My back was killing me and I blamed it on not sleeping well. I often don't do well sleeping in new places so I just blamed my aches and pains on that and also just getting to be bigger every day. Being seven months pregnant isn't supposed to feel good, right? We decided to skip the mall and just head to the lake house to relax.

Tuesday comes and my back still hurts. I've had a sore back before but usually a heat pack, ice, stretching, etc. will help. Nothing was helping.

Wednesday comes and at one point I remember laying on the floor in tears telling Adam this can't be normal. I told him there was no way I could last two more months in that kind of pain. I frantically searched for a massage place in the area that did prenatal massage and thank goodness found one, but a prenatal massage is really just a sissy back rub. Helped to relax me a little but the pain was still there. 

Thursday I think I was a bit better as I was starting to find ways to sleep a little more comfortably and because of that was resting better. 

Friday comes and I'm shot. We drove to Phillips from Marine on St. Croix and I couldn't keep my eyes open, I felt like I hadn't slept in days. My stomach was also not feeling great and so began the couple days of not being able to eat much. Went out for the surprise dinner to celebrate Adam's aunt and uncles 70th birthdays and I couldn't eat.

Saturday: a hot, humid day. I was able to eat a little but still wasn't feeling right. I actually called my doctor back home to update him on how I was feeling and to refill a prescription on an antibiotic to help with my tummy troubles. He didn't seem worried, no concern or questions asked. While at the pharmacy I bought a heating pad for my back as the pain was still there. I think I was learning to live with it, I had two more months to go so time to deal, right? The heating pad definitely helped a little because I went to bed Saturday night with my back feeling the best it had in nearly a week. Little did I know what the next day would bring..

5 weeks old

August 18 - Today James is five weeks old. Where has the time gone? He's now 5 lbs 2.2 ounces and has moved up a diaper size because he pees through the preemie sizes. Little guy is moving up in the world. He was also lowered from 2 liters of flow on the vapotherm machine down to 1 liter on a regular nasal cannula and had no episodes of desaturation today while I was visiting. We're on the right track!

He was moved up to 45 ml per feeding (every three hours) but has been on NG feeds only per the speech therapist. We tried breastfeeding on Friday and he did  well initially, or as the therapist felt he did too well with sucking and his swallowing ability hasn't quite caught up causing an episode of bradycardia. She strongly felt that this was him being a preemie and that he needed time for his swallowing ability to mature. I hope she's right. We were also told that being on the vapotherm machine, or high flow, and trying to feed via bottle or breast are not good together. The speech therapist explained it as trying to drink and swallow while you're head is sticking out of a car going 60 mph. Not fun, but makes sense. She'd like to see him weaned off of all flow before trying feeding again, but maybe she'll compromise for the 1L he is on now as he sure seems to miss his bottle.

James is becoming more and more alert. He is waking up for his nursing cares and feedings and staying wide wake for 40-45 minutes. These are my favorite times of day because he just loves to look around, look at you and listen. His favorite tunes right now are the ABC's, Twinkle Twinkle Little Star, and If You Want to Be a Badger... 

It feels great to be home, sleeping in my own bed, and pumping in the privacy of my own home. I was so looking forward to organizing and arranging the nursery and we've made progress but there's still lots to be done. Just doesn't feel like there is enough time in the day.

I'm having a hard time emotionally processing everything being home and also feeling overwhelmed with just... everything. In Wausau I stayed preoccupied with the thought of getting home eventually, and now that we're back in Chicago I feel like... now what? My life has changed so much and I'm trying to process things but James isn't home so I'm in limbo and can't quite settle in. I asked the difficult question of "how long?" to our nurse practitioner today and she just shrugged. I know she can't give me an answer but sometimes you just need reassurance that he will come home soon!

For now, I'm hoping tomorrow I'll feel better and that I'll settle into a new routine here. Thanks to everyone for your messages, calls, thoughts, prayers. I'm sorry for not getting back to people right away but know that you're appreciated and we love you all.

James update: almost four weeks old!?

My apologies for not getting this updated, every time I sit down and think to blog  it's time to pump or change a diaper or leave to get the dog out or I'm too tired to think. Life of a mommy I guess!

Adam has done a good job posting some updates on Facebook, but a quick recap of what's been going on the last week:

James has been doing a great job gaining weight. He's consistently been putting on about an ounce per day which is what they expect. As of today, August 10, he weights 4 lbs 11.4 oz (up over a pound since birth - 3 lbs 10 oz). I can honestly say he feels heavier and looks bigger. He's got chub to his cheeks, a double chin and rolls starting to appear. This makes for a happy momma and some very pleased nurses!

He's now getting about 40 ml per feeding or a little over an ounce every 3 hours. When he's awake and showing signs of wanting to 'nipple,' like making sucking noises and bringing his hands to his mouth, we or the nurses will try bottle feeding. He has taken the full bottle twice and has been consistently taking about 10-15 ml out of the bottle. In order to be discharged he has to take the full bottle every time. Not something we're really pushing for right now until his breathing gets a little better and he matures. About half his feedings are done via bottle and the other half are still done via the NG tube down his nose to his stomach. He also gets caffeine and some added vitamins via the tube. Breastfeeding is something I would like to try more as he is able but is not a huge priority of mine right now; we've tried a couple times but it worries me that we can't monitor as easily how much he gets and my concerns are more that he's getting what he needs to grow and that he's not being worn out by trying something new. I'm pleased with his bottle and NG feedings as he is getting my breastmilk -- which means pumping every few hours around the clock. This is exhausting and makes me feel tied down to this pump, but I guess if we were home with a 'normal' newborn I would feel the same way with bottle feedings and breastfeeding. If I could figure out how to pump and type at the same time there would be lots more blog posts!

Now what he's not doing so well. James has been having more frequent episodes of bradycardia and apnea. Some specific names of some of what is going on are periodic breathing and disorganized breathing. Essentially what happens is that his little lungs still aren't strong enough to be breathing fully on their own or even with little support so they tire out and he basically stops breathing causing his heart rate to drop and to turn him a little dusky or even blue colored around his lips. Sometimes this happens in smaller bits and he is able to recover on his own, and sometimes he goes into a deeper apnea where he really does stop breathing and this is when he starts to change colors on us, the monitors are all beeping and the nurses come running. Very scary because we feel like there's nothing we can do to help or stop this from happening.

What we've learned as this continues is that he may have some mild trachea weakness (normal preemie thing) and he has a small mouth (like mom) and possible smaller airways (they had trouble intubating him when he was born) and that they've tried weaning him and have even had him off all breathing support and airflow a couple times (making him tire out after a day needing several days to catch back up with the airflow support) and possible reflux (normal baby thing) and just being a general premature baby all contributing to the problem. Lots of little normal things that when added up are a lot for a young baby and that we've been reassured again and again he will likely outgrow once he gets to term or soon after. Even writing this makes me feel better because I'm trying to explain and reassure all of you that it's normal when I sometimes worry that it's not again reassures me that *hopefully* this really all is normal and to be expected. Hard to digest when none of this is normal for us and not what we expected.

A recent concern of mine has been that it seems these 'episodes' of bradycardia and apnea seem more frequent and worse now than they have been and it was finally explained for the millionth time to me today in a way I accepted; basically he was on more support initially that masked the problem and we've been pushing him and testing him out recently without any support and he's just tired and not ready. Also, around feeding times and with cares he has more stimulation which often times is negative causing him stress and to have more issues around those times. I often worried it was due to feeding, reflux, allergies, my fault, a congenital abnormality, etc that was causing problems but in my chat today with our nurse and doctor I'm finally understanding that no, it's just a part of the normal process and there's nothing I or they can really do differently besides be here and watch him when these episodes are happening to encourage him to take a breath or reposition his little head if it's too flexed or extended causing a kink in his little airway.

We've also been told with more certainty that we may not be going home soon. For some reason I had it in my head that it was always "maybe next week" basically every week. On Thursday we were told at least two more weeks or until he's about 37 weeks old or considered 'full term' as this is when his lungs and breathing should be matured. Two more weeks seems like an eternity to me as I've been away from home since July 5th. But hey, at this point what's two more weeks?!

I'm not sure where the time has gone but the thought of not getting home with him until nearly the end of August breaks my heart. Mainly because my short term disability will end the first week of September and financially I will need to go back to work sooner than we would like/basically right away when he gets home in order to be able to pay all of our bills. In theory I should have also had more vacation time by his due date as it accrues with each paycheck, so we would have been more prepared with more time off if he would have made his arrival closer to his due date. Also, lots of my vacation and sick time were zapped up in April with my surgery to remove the cyst and again with one of the following infections that got bad enough I had to take off with sick days. Cue the first "Why me?" comment.

 I would give anything to have those seven weeks of disability back or to have it start over again with him when we finally get home, just to feel like a normal family with a normal healthy newborn for just one second. Cue the second "This isn't fair, what did I do to deserve this?" comment but in reality, thinking of going home and going back to work and leaving him are the hardest parts about this because I feel cheated of that time with him, especially since it's more important that I'm home with him because he is a preemie.

We have applied for social security medical assistance for him to help with medical bills for him as long as he is in the hospital but still waiting to hear whether we were approved. We also sent the short term disability company a letter from our nurse practitioner requesting more paid time off for me because he is a preemie and cannot be sent to daycare, etc. but haven't heard anything yet. What do other preemie families do, especially when their babies are in the NICU for months? Honestly, how do people get by? Must go read more blogs...