Drama of the momma

I've been dreading updating because everyone loves a happy ending to a long story. Well, motherhood is HARD! I can't say that everyday is roses and butterflies. I'm sure all the moms out there know this but for those of us that are new at this, I'm overwhelmed and the anxiety and emotions that surge through my body at any given moment is astonishing. At this moment, I'm enjoying a calm moment with Gesina as we try out our new snugli (see pic below).

She is sleeping on my chest now and it is awesome. But the last few days have been a trip! These mom hormones are ridiculous. After Monday night's emotionally charged and anxiety provoking homecoming, I'm slowly calming down and hoping to find my stride. I'm working on minimal sleep as it takes Gesina up to 1 1/2 hours just to complete one feeding! Tuesday was back to back meetings with the home health nurse (once a week due to her need for a feeding tube/heart monitor) and the pediatrician. Thankfully my amazing child care provider Trish came over on Tuesday and helped me schlep Gesina to the pediatricians office on one of the coldest days of the year. After meeting with the pediatrician, I did enjoy a bit more calm confidence that I can do this and it will be fun. I did forget to eat that day though so I need to be smarter about taking care of myself. My anxiety hit a peak on Wednesday as I had to go to work. I had only been home with Gesina for a day and a half and guess who cried on the drive to work? Yup, I am officially a mom! Work was great as my colleagues and students are always supportive and willing to help. But I'm so glad it is Thursday and I get to have Gesina all to myself for a few days. We have a lot of learning to do together. I need to learn her cues and she needs to know who I am. I think you can tell by my writing that I'm working on high octane energy right now. This frantic energy has me up and down emotionally and my next challenge is to CALM DOWN, take better care of myself and delegate!

So in an effort to calm down, I'm taking my mom's advice and trying to forget the past. I can't take the baggage of the NICU experience with me everyday. I need to let go of it all, not rehash it, enjoy the moment and seek out my new normal. When I think back through the last few weeks, I get very emotional now as what I went through hits me. I was on survival mode as I went through the NICU experience. Now that it's over, I'm starting to process the emotional aspects of the experience and that is a bit overwhelming. Some day in the far off future I'll come to terms with the emotional aspects of the experience, but right now I need to move forward.   

Taking better care of myself is recognizing that I'm no good to Gesina, Adrian or my fur babies if I'm not eating and able to function. So in addition to eating and making sure my basic needs are being met, I'm trying to forgive myself. I am amazed at how much guilt I feel. I feel the need to apologize for everything. When Gesina cries, I feel it's a personal failing on my part. When the cats want my attention but I can't do it, I feel like I'm a bad person. When Adrian is downstairs and I am upstairs tending to Gesina, I feel guilty I'm not spending quality time with him. When I can't answer or even check my email at work, I feel guilty for being a deadbeat coworker (sorry RU folks). I was listening to NPR this afternoon and a film producer's line in a new film (Happy Christmas) was discussed. The line was something like "If I have it all then I have to do it all". Well this is how I feel, that since I wanted to have it all, I now have to do it all at the exact same time. That's exhausting and I have to stop. This leads to the final aspect of finding my new normal, learning to delegate.

I am surrounded by many caring and supportive people who have offered their help numerous times. Instead of feeling guilty for needing help, I need to learn to ask for it and accept it. I started today but taking my colleagues up on delegating to them. I need to recognize that I have had a new baby in my house for about 3 and 1/2 days and I'm working at the same time. Not only am I not as prepared for this melding of my worlds as I'd like to be, no one would expect me to be prepared for this. So if I can allow myself to lean on others, without guilt, feeling inadequate, or basically feeling like I'm imposing on others, I can get through the challenge of finding my new normal. I doesn't just take a village to raise a child, it takes a village to support the child's mother :-)

I'll try to update my blog once a week from now on. If I fall short, I hope you'll forgive me... hee hee!

Emotional day

I've cried so many times today and experienced so many emotions that I'm exhausted! I'm excited to have my baby at home, scared I'll fall short at being a mom, overwhelmed with only 7 hours of caring for a 7 week old baby, and terrified my life will never be calm again. As a friend on Facebook said, I'll take it one day at a time. I made it through 53 days of the NICU so that gives me some confidence but right now I have to get my hour of sleep in before it is the next feeding time!

Just like Christmas Eve

I'm so excited to bring Gesina home that it feels like the night before Christmas! As I like to say, she is the best combined birthday/Christmas gift I could ever get and I finally get her all to myself. We have a lot of work to do and I know I'll have my challenges with her being a baby and all, but to have her home and be able to hold her whenever I want is worth it all. Her feeding was okay last night and this morning but she slept through 1pm and 5pm feedings so while I tried, she only took 10 ml and had to use the feeding tube for the rest. I did get to snuggle with her though so that was awesome. 

I learned today that she has to wear the heart/respiration monitor 24/7 as long as she has her feeding tube in. Honestly, having to put leads on her and carry a monitor in a bag over my shoulder with me everywhere we go (even just to the kitchen) is going to suck. It's ridiculous and I was so excited to NOT have cords and wires attached to her at all times. But I trust the doctors to know what is best for Gesina and I'll do it, begrudgingly. This does provide me with an even stronger incentive to get her to nurse and take the bottle though. I've also got to work on her sleeping hours. She truly has gotten day and night confused as she sleeps during the day and is up and fussy at night. I know she's the boss of me now but I just can't have that schedule! There are no windows in the NICU so I'm hoping the natural light "cycle" helps me win her over to my (and most of societies) sleep/wake cycle.

I wish the weather tomorrow wasn't scheduled to be so cold. Driving a baby home in the cold weather for an hour drive is not something I would prefer! Especially with a new-to-me heart/respiration monitor that may have a high number of false alarms AND knowing she is scheduled to eat at such stringent intervals. I'll have to be sure the leave the hospital at the optimal time to avoid the worst of the weather and work around feeding times. I assume I'll adjust the feeding schedule according to Gesina's needs but I won't be able to do that for a few days after I figure out Gesina's needs :-) 

My baby is coming home! Life is good and my family will finally be together. No more hours on the roads in horrible winter roads just to see my baby. Tears of joy today... what an emotional journey so far!

So ready

I'm so ready to have Gesina home and incorporating her into my life. I had to put the feeding tube in again today and yup, I cried before I did it. I was fine last time but for some reason today, I just didn't want to experience hurting her. I realize that all moms have to see their babies hurt and some even have to do something that hurts them, so I did it. But I didn't like it and hope I learn to very efficiently put the tube in to minimize her discomfort. I also hope she doesn't pull the tube out so it can stay in the whole 30 days before I have to change it. And maybe she'll figure the eating thing out so I don't have to install one in 30 days at all! One can dream and be optimistic but I know Gesina will be in charge of that decision.

Gesina seems to have reversed her days and nights. She was up fussy last night and didn't eat much from the bottle. She then slept a lot during the day to make up for being up in the night. Hopefully we can turn that behavior around before she comes home. Her bottle eating has continued being low so I switched her bottle today which I hope helps turn the negative trend around. She took 50 ml from the new bottle this evening so we'll see. I think she's getting so much from the feeding tube that she just isn't hungry when we go to feed her. She is now up to 120 ml and the feeding tube runs over 1 1/2 hours. I'm hoping that when we go to on demand feeding that she'll link hunger and eating back together. I just feel like we are force feeding her and look forward to working with her pediatrician. I need another opinion on her eating and amounts. I'm sure I'm wrong and she is getting the amounts she needs but I need a fresh opinion from her pediatrician to assure me.

I now have all of her medical equipment home and have been trained on how to use it. She has a feeding tube and heart/respiration monitor. I'm a bit surprised about having the heart/respiration monitor but the nurse told me they always have one for the feeding tube babies. In a way it's nice to have the monitor so I don't have to worry about SIDS but I've been warned there are a lot of false positives and the alarm is really loud. Either way, I can't see any reason that Gesina can't come home Monday. Finally, we can begin our lives together!

Emotionally tired but hopeful

After 12 hours of being awake and fussing last night (2 pm to 2 am), Gesina finally fell asleep. I figured she had earned her sleep and gave the nurses the go ahead to just feed her using the feeding tube for two of her feedings (the ones she was sound asleep for at feeding time). And just to clarify, when Gesina refuses the bottle or doesn't finish it, she gets fed but through the feeding tube. So she never starves but the feeding tube has the potential of becoming a crutch for all of us. I can't get upset with the nurses for using this crutch as I did yesterday too. I couldn't bare to wake her after she had been up fussing so many hours. I don't know if my and the nurses motivation to use the feeding tube are the same, BUT I will clarify with the doctors how to approach the feeding tube when Gesina is home. I'll let them advise me on the balance between how much time/effort should be spent helping Gesina overcome her nursing/bottle issues and when to use the feeding tube. I think moving to an on demand schedule of feeding versus the current 1-5-9 schedule she is on will help with the feeding issues. My mom found a support group on Facebook that had many NICU graduates that found their little one eventually just "got it" when it came to the bottle. That something just clicked and they figured it out. I look forward to the day when it clicks for her.

In the meantime, Gesina is coming home soon. The goal is Monday and the only thing that can get in our way is insurance approving and getting me the equipment I need to have the feeding tube set up at home. I have "training" on that equipment tomorrow and part 2 of me inserting the feeding tube tomorrow as well. So, Gesina is coming home soon and all the concerns with the overly structured and low stimulation NICU environment will come to an end. I look forward to finding our own schedule and activities we can do together. Until then, I'm going to try to relax, sleep, and enjoy my last "child free" weekend :-)

Accepting the feeding tube

When I called the hospital for an update this morning, I found out Gesina's feeding amounts overnight were horrible. A low of 0 ml and 5 ml at two different feeding times. I was so not happy; had the nurses given up because the feeding tube is just easier? I know they have a 1 hour rule; meaning Gesina has to eat within one hour and whatever she's taken is it. They don't allow snacking or long sleep/feeds as they say it's a bad habit that is not good for anyone. So I wondered if they tried for an hour or not tried at all?

Now that I have gone through the day with Gesina, I get the importance of the feeding tube. Much like the nurse who fed her 5 ml, I seemingly fed Gesina with the bottle for 1 hour only to discover that she took a whopping... NOTHING! She just sucked loudly on the bottle but didn't create the actual suction to eat! Unbelievable... She has also been awake all day fussing and looking around so I assume she'll sleep through her next feeding resulting in another 0 ml in the books for bottle feeding. I don't know why she is doing this but with the feeding tube, we have time to figure it out. I brought in a different bottle because it has a shape that is more natural (like she were nursing) but she is not actually eating with it either. So the good news is she isn't doing her "bottles are horrible, quit torturing me" routine but instead looks contented with a bottle. This is a positive association with bottles and feeding. But now she has a new trick where she isn't actually using the mechanics necessary to eat. She is quite the mystery. I will say having spent from 2:30 to midnight with her awake and fussy, I'm exhausted. I'm not sure how I'm going to handle her on my own! I did get to put the feeding tube in and they are going to have me do it again in the morning. This is taking some of the fear away but she definitely doesn't like it. I'm hoping I only have to do it once a month which is how often you need to put one in, unless she pulls it out. At the end of the day, I'm getting used to the idea and seeing the advantages. She is 7 weeks today, not much longer and she'll be switching to solid foods so I will accept the feeding tube as gracefully as I can. 

The lows help you appreciate the highs... right?

So many wins last night. A great feeding and Gesina took 70 ml with her nighttime nurse, even though she was nearly asleep, and 95 ml from her morning nurse. But when I went down to see her at noon today, the doctor said Gesina had lost weight yesterday. The doctors have decided to face the facts and do what they think is best for Gesina. On average, she has been eating only 2/3 of her nutritional needs since the feeding tube came out. Functioning at this nutritional level means she is more tired, which is getting in her way of eating. So, the doctor told me they are putting her feeding tube back in and her soonest possible time to come home is Monday. At first, I thought they were messing with me. When I realized that the nightmare wasn't over and what he was telling me is real and going to happen, I decided that this is what's best for Gesina and it's about her. I told the doctor this, that I understand that this is what's best for Gesina and that I'll take care of me and get over it. But every hour I seem to have to repeat this to myself to keep from losing it.

There are a million reasons that this is good for Gesina. We will continue to focus on getting her to eat large amounts with the goal of not needing the feeding tube to "finish" her feedings with. With a feeding tube, we can do two things. We can focus on solving her feeding issues without the frantic need to figure it out quickly before she loses too much weight. We can also get her weight back to where it should be so she is awake and alert more often, allowing her to stay awake for her feedings. With this additional time, I plan on staying the night at the hospital Thursday night as well to continue working on nighttime feedings. So it's important to remind myself that we may have lost a battle but we haven't lost the war. I don't know too many teenagers walking around with a feeding tube so eventually, we will figure this out.

Emotionally, this is quite a blow. As I like to say, this is going to leave a mark. At 7 weeks Gesina should be smiling at me and starting to use her voice by cooing and other random vocalizations. Instead, she barely knows me from the various nurses she spends most of her time with. She doesn't vocalize because she has no one to vocalize with. She spends 24 hours a day in a crib with bars and stares at the ceiling. I need to get this child home so she can develop and bond with her family. I really hope by tomorrow I can get my perspective back. I'm just going to keep repeating the positives of the doctors' decision to myself every time I get down or become overwhelmed by emotions. I'll also keep in mind what Adrian says, that in 6 months Gesina will be making up for lost time and running this household like a champ. But until I can get my head around this, I'm just going to be sad for one night. I'll be better tomorrow, promise, for Gesina's sake.

Yay!

I found a way to bypass the hospital's block on blogs :-) and I have to share a big win! Gesina just nursed and took 114 ml in 35 minutes!! There was no mid-meal freak out just nice quiet nursing where she relaxed, closed her eyes and took a greater amount than she ever has by bottle or by feeding tube. I was so excited I made the nurse on duty, whom I've never met, give me a hug.

When I went in to see her she was fussing in her crib and I picked her up. She just looked at me like I was a mirage and stared in my eyes. After all the hospital assessment drama, she went to town with the feeding. This is the second feeding since I've been here. The first feeding she nursed for 20 minutes taking an unknown amount then took an additional 60 ml by bottle. The nurse on duty at that time was convinced she's coming home soon so no need to measure her before then after to see the nursing amount, hence the unknown amount. That same nurse (who knows Gesina pretty well and is known for her ability to get babies to eat) also fed her the bottle and Gesina fussed a bit but took the bottle. I'm so looking forward to the next feeding and if I have to stay two nights (or spend a full 12+ hours here tomorrow) I will. I will prove to them and myself that I got this. My girl just doesn't care much for the bottle and likes to nurse. So let me do that and we'll get on with our regularly scheduled adventures! I'll try to temper my excitement because you just never know but right now, at this moment, I'm on cloud 9. I feel like a superhero because I was there for my girl to pick her up when she was fussing and to feed her when she was hungry. I honestly may not leave this hospital until I get to take her home!

Staying the night!

Gesina lost 10 ml yesterday so I'm planning on staying the night. The only way I won't be able to stay the night is if I get bumped for a more dire case. The hospital has a block on their internet access for blogs so I may not be able to post tonight (unless I can figure out how to bypass it...) so I'll leave you with a picture instead. I had already posted it on facebook but mom said I had to post it on here so Sagesmoon can see it. Sagesmoon, this one's for you :-) This is the one we are fighting for!

Taking matters into my own hands

Gesina maintained her weight yesterday so she did not come home today. After spending some time at the hospital today I left very frustrated and at my wits end. I spent the drive home trying to figure out why I was so upset. By the time I got home, I figured out my frustration and have a plan. I'm going to take matters into my own hands and mom up... again.

Every day, Gesina has been assigned her daytime nurse who is the only one who has been successful in getting her to eat larger amounts. But every night, they've been assigning Gesina to a new nurse she has never had before; yup a different nurse EVERY NIGHT. This means that my very particular, finicky eater is not eating nearly as much at night and all the daytime gains are lost. I've also figured out that they are feeding her every four hours... just like when she was on a schedule. They are not feeding her when she wants to be fed, just every four hours like they feed all the other babies. None of this is the "fault" of the nurses as they are just doing their jobs as assigned. And the nurse assignments make sense as Gesina is not a high-risk case right now so her earlier, more consistent nurses are assigned the more interesting cases. The "floater" nurses she is getting assigned to are more likely to be experienced in premature babies and not full term, nearly 7 week old babies. And finally, today when I wanted to feed Gesina the nurse was busy with other babies/moms so it took about 15 minutes before I could begin nursing. By that time, Gesina went from showing signs of being hungry to temper-tantrum hungry. She ended up not nursing and only taking 20 ml from her bottle (she should be taking at least 80 ml). Taken together, the doctors want to keep Gesina in the NICU until her feeding issues are resolved. The problem is that the NICU nurses/system is not designed to help a baby with her feeding issues. At the end of the day, we are not doing anything to address her feeding issues besides waiting for her to magically grow out of it. In fact, a different nurse every night is probably setting her back.

So I've come up with a plan. The person that needs to learn how to get Gesina to eat and can be consistently there for her is me. If Gesina doesn't magically gain weight tomorrow and come home, I'm going to do everything I can to stay the night at the hospital. I will sit by her bedside and watch for all the cues you read about in the baby books. I will feed her for every meal I can, when she shows signs of hunger and not every 4 hours, and I'll do what I can to figure it out. I will eat and sleep as best I can when she sleeps. So my plan is to take matters into my own hands. I'll let you know how it goes!

Weight gain, whew!

Gesina gained weight yesterday! A whole 40 ml so I'm feeling much better about that. She also nursed today for a nice amount of time and took her bottle. Afterwards, she was content to look around and stare at me. I am so thankful to have a nice day with her that is not wrought with feeding fits or temper tantrums... ha, I sound like a veteran mom of a baby! If she gains weight today then she would be coming home tomorrow. I'm NOT holding my breath (lesson learned), but I'm so glad she gained weight so I don't have to worry about a feeding tube anytime soon. 

I bought a thank you card for the NICU nurses in preparation for Gesina coming home. She may not come home tomorrow but she is coming home sooner rather than later. These nurses took such good care of my baby when I couldn't AND they were very entertaining for the last 6 1/2 weeks. Not to mention the education they gave me on how to take care of Gesina, that a thank you just seems so insufficient. If I knew anything about cooking or baking, I would make them something but alas, I have no domestic skills! Gesina may grow up on a raw veggie diet because I'm not much interested in cooking :-D 

I've also decided today that Gesina is the most beautiful baby girl I've ever seen... I really am a mom aren't I!  

Fear

Now I'm getting a little scared. I struggled to feed Gesina; she just wouldn't create a suction on anything. I'm scared she is going backwards on eating. She had also not really done a great job with the nurses overnight either. There is only one nurse that has luck feeding her; her normal daytime nurse. Luckily that nurse is working everyday through Wednesday so Gesina won't starve but she'll take 100 ml from the daytime nurse and as low as 30 ml from a nighttime nurse. I know they are not going to let her starve but this regression is making me nervous. I'll learn everything I can about the daytime nurses technique (she thinks Gesina is just very, VERY particular), but I fear the feeding tube is in her future. Honestly, she acts like feeding her is akin to torture. She used to nurse with no problem but she wouldn't even do that today. It's not like she was generally fussy today either. She just pitches a fit when we try to feed her. If we want to just hang out with her, she is fine and in a good mood. She seems to have a negative association with the bottle that we've got to find a way to overcome. Again, I'm grateful she didn't come home and lose a lot of weight. I would be crushed to bring her back and the guilt would be pretty hard to overcome. But now I'm just worried and it's hard for me to understand how eating is difficult for a baby to do. I suspect that's a naive statement but eating just seems as basic to me as breathing. Blah.

Weight loss day 2

Just wanted to quickly share that Gesina has lost weight last night too. She won't be coming home this weekend so we'll see how she does today and Sunday on her feedings for a Monday morning decision.

How am I doing about this? Cognitively, there are a lot of things to help me rationalize this situation. Gesina is where she needs to be right now. The professionals need to figure out the feeding issues and work with her to teach her how to eat effectively. Maybe Gesina's weight is stabilizing to what "she" wants it to be and then she'll gain weight (maybe they were overfeeding her in a way). And finally, I would rather she lose weight with them than with me. If she were home right now losing weight, she may end up right back in the NICU and I would have the opinion that it was all my fault. I don't need that type of guilt right now so again, she is where she needs to be right now. Emotionally, I'm disappointed. I selfishly want my baby with me all day without having to drive an hour there and back to see her. I don't want to have to leave her every night, etc. But I'm old enough to know this isn't about me, it's about her. She is where she needs to be as she learns how to eat.  

Weight loss

So after getting worked up and not being able to sleep last night, Gesina lost weight and did not come home today. It seems she was a bit off for the nurses last night too and only took about half the amount she normally takes of her bottle. Today she took a decent amount from her usual daytime nurse and was pretty sleepy all day. I got to meet with the occupational therapist so she could give me all the information and education she could. I have a few more tips and tricks now to help her organize herself when she has her freak outs. If Gesina gains 30 ml by tomorrow morning she will be going home. If she does not, we monitor her weight over the weekend and see what happens for Monday. I asked if they would be giving her a feeding tube again and the doctor said no, we wouldn't be doing that. This is a relief so I'll be happy with Gesina coming home when she is ready and comfortable with the bottle.

Tonight I'm going to sleep early to recover from last night. I'm exhausted and now that I've had my own little freak out, I feel more prepared for her coming home. It would be nice to have the weekend with Gesina home so I can get used to it before I prepare for the work week but Gesina is in charge of that. She comes home when she's ready, not when I want her too!

Anxiety

Sorry my post is so late tonight. I've been frantically cleaning and trying to prepare for Gesina coming home. I still won't know for sure if she comes home tomorrow until tomorrow but the nurses and I are optimistic. She gained weight yesterday so now she just has to gain weight today. I spent the day with her and she seems to be getting bored laying in a crib all day at the NICU! I'm excited to bring her home and start exploring the world with her. I'm hoping she likes the swing I got her and if she doesn't, I'll go get her a bouncy chair as it seems it is a one or the other thing with babies. I've gotten her meds from the pharmacy and have to bring them in with me tomorrow to ensure they are the right ones. I'm not really happy with her room being ready but I'm at a bit of a loss as to what needs to be changed. I figure that is something I can change when she's here and I can customize everything based on how she and I use everything.

When I tried to feed her at the NICU today it was a bit of a disaster. This has made me anxious. She nursed for 10 minutes then had her mid-meal freak out. I couldn't calm her down for more than a few minutes at a time and every time I tried to feed her again (part 2 of her feeding) she'd freak out again. She was telling me by her actions that she was hungry but she just wouldn't eat for me. Eventually the nurse fed her a bottle and they tried to get me to take a break from it but I hung around because I refuse to punk out. Honestly, the nurses didn't do anything different from what I was doing. But this leaves me scared. What if I can't get my little girl to eat? I know babies just fuss, and I know I'll figure it out... but that doesn't make the process any less scary. What if every meal is a struggle and we experience this battle of wills every two hours? Ugh.

Back to the daily grind

Today I went back to work. It was nice to see everyone and absorb all the support from everyone in person. I felt more centered today after being at school. I also picked up my car from the shop and remembered how much I love driving my car. It may be worth that big repair bill :-)

When I finally got to see Gesina, she was awake and doing well. The nurse got her to take 95 and 90 ml from the bottle earlier today and she was just warming up her next bottle when I arrived. I got Gesina to take 75 ml but it was hard earned! The nurse worked pretty hard to keep me from beating up on myself because I struggle to feed Gesina and often compare my efforts to the nurses. I was reminded that the nurses are professional baby feeders and I have only done this a few times. Gesina is a bit finicky about feeding and today what was slowing her down is halfway through she decided that she must have a diaper change before she could continue. I think I have a high maintenance baby girl (to go with my high maintenance significant other!). I have to remember to cut myself some slack in the next few weeks. It's hard to accept but at this time the nurses know Gesina better than I do. They have spent whole days/shifts attending to her over the last 6 weeks and I've only gotten snippets of time with her. I get to learn her patterns and personality very soon (yay) but I have to be okay with the fact that I'm starting from scratch. I did have a small win moment with her today. She was fussing in her crib and I tried to calm her in the more traditional ways I had been using in the past but nothing was truly working. So I stopped and thought what do I want to do? I picked her up and instead of sitting down with her (what you do in the NICU because of all the tubes, wires, and rule-bound nurses who yell at you if you stray from your 2 x 2 area), I remained standing and just swayed with her back and forth. She calmed down immediately and just looked around happily. I finally felt like I may be able to do this and that my instincts were there, just waiting for me to use them. 

As for when Gesina will come home, I won't know until Friday morning. She needs to eat without the feeding tube for two days AND gain weight in that time. So far she has not gained weight, she has stayed the same weight. If she does well tomorrow with the bottle and gains weight, she can come home. The doctors will make that decision Friday morning after they do their rounds. In the meantime, I'm getting Gesina's prescriptions filled and looking forward to spending a lot of time with her tomorrow. I am determined to figure out how to feed Gesina and learn as much as possible from the nurses while I still can!

Closer to home

Gesina took her full feeding by bottle twice this morning and then had her feeding tube taken out. I got to try feeding her and while it took me much longer to get her fed than her main day nurse, we got it done. She saw the speech therapist too but only took 32 ml from her so at least it's not just me that struggles. I'm anxious to see how she does the rest of the night and tomorrow. I'm picking up pointers from the nurses that have worked with her as well. She has a problem organizing at first so we have a "training wheels" method we've made up. She takes a pacifier, gets going, then we switch to the bottle. This gets her started and she is usually good to go then.

Her EEG was the same as it's been all along; no active seizures but the potential for seizures is there. Tomorrow they test her blood to ensure the levels of seizure drugs in her system are at the appropriate levels. The most exciting news is the DOCTOR says that if she does well on the bottle, she can go home later this week (Thursday or Friday). If she still needs the feeding tube, I get trained on how to insert it and she goes home early next week (Tuesday). I'm so excited and nervous at the same time. I have a "Gesina's coming home" to-do list now. I don't think there is anything I can buy or do that will make me feel prepared but I'm looking forward to learning as I go. I can't imagine going shopping with Gesina but I'll do it if I need to!

Good day

Gesina's regular daytime nurse was working today which helped make some good things happen. She has more patience with Gesina and knows more about what Gesina likes, what her quirks are, etc. So, the good news is Gesina took her whole feeding by bottle two times today! The nurse sees a pattern with Gesina's eating. She eats about 40% of her feeding, fusses for about 10 to 15 minutes, then will take the remainder (or at least most) of her feeding. This explains why she will nurse about 40% of her feeding, fuss, then take the bottle for most of the rest. After checking out her feeding pattern the last week, her doctor had the BRILLIANT idea of taking out her feeding tube tomorrow and feeding her every three hours. I'm trying not to get too excited in case the experiment goes awry but this is what Adrian and I have been looking forward to. Adrian gets annoyed with the fact that Gesina can always rely on the feeding tube so it's difficult for her to learn the association between nursing/bottle and getting food. I have obviously been wanting to feed her more often in smaller amounts. The doctor mentioned doing this for the next two days and seeing how she does.

Gesina had her EEG today but we may have to repeat it tomorrow. The nurse thinks Gesina didn't like the EEG technician! She cried and fussed the whole time so we may not have gotten a good "read" from it. We shall see. Two of her nurses mentioned that MAYBE if things look good, Gesina could be headed home the end of this week. Again, I'm trying not to get my hopes up but WOO HOO it would be so amazing to have her home. Now these are nurses and not the doctors, but they've seen lots of cases so their opinion is encouraging at the very least. I'm a little nervous about her coming home now that I have to go back to work. I think I would be crazy not to be nervous but I'm more excited than anything else. I feel a renewed need to clean the house, go shopping for baby food, diapers and a bouncy seat (she likes to bounce), and get ready for massive baby cuddles :-) My baby may finally be coming home! Tears of joy are flowing already but again, I'm trying not to get my hopes up...

Mom went rogue

Gesina was a little fussy this afternoon but I guess that's because she has a tendency to stay awake most of the morning. By the time I get there at noon she is tired and hungry. The nurse today has pointed out that Gesina won't eat until she is calm. If I get to her and she's upset, anxious, etc. she can't focus on eating. You have to get her calm and at an emotionally neutral point before she can eat. She also is doing really well with her pacifier so I'm encouraged that she has the mechanics down of how to eat, she just needs the motivation. It's hard to be motivated when the feeding tube always comes through for you. She gets fed every 4 hours, not 5 as I said before. So at 1 pm she took 18 ml by nursing but about 40 or 50 ml by bottle. At 5 pm she took 32 ml by nursing but was so exhausted that she then fell asleep so we just fed her the rest through the tube.

I did have a very annoying moment with a nurse today which is a first for me and it wasn't my nurse. After I had lunch I came back to my pod area to find one of the other babies screaming. I checked Gesina who was sleeping and looked over and there were parents visiting their baby right next to the screaming child. They looked at me with that expression of wide-eyed anxiety caused by a screaming baby. A nurse I've never had before was tending to the baby next to Gesina. With my hands clamped behind my back, I walked towards the screaming baby. As I passed the parents near him I mentioned that maybe if I just talk to him he'll calm down and went to talk to him. I had no intention of touching or getting too close to him. Well, the nurse yelled in a scolding tone "You can't go near any of the other babies!" As I walked back to Gesina's area I mentioned to the nurse that I was just going to talk to him and she said in a terse voice "[other nurses name] has it covered." I understand that if this is a policy that it should be upheld and you never know how the parents would respond to their child being exposed to another (rogue) parent interacting with their child. BUT as a parent, listening to an obviously distressed baby is difficult to do. Also, I'm a parent of a NICU baby. I didn't ask for this situation, where the only way I can see my baby is in a pod with other babies, parents and nurses there all the time. Because I have to stay in the same room all the time everyday, then don't make my environment hostile by being rude to me. This nurse works in my pod once in a great while yet this pod is my life right now. I'm there everyday and I need to feel comfortable, supported, and respected. I know I'm blowing this out of proportion but a simple and reasonable explanation (even an hour after the fact) would have prevented my angst. Grrr. From the nurses perspective, she had to listen to this baby screaming for awhile and may be on edge because of it. Because she didn't know me, she may have misinterpreted what I planned to do to a child that was not my own. So, I'm trying to be understanding but the NICU nurses job is to take care of babies and families. Even if the family is not your "charge" you just don't get harsh with them. Don't get me wrong, these nurses are amazing and all but this one have been there for me 100%. But I know parents can request some nurses not take care of their child and she may be the one I mention. Blah. I hate to start a feud or create any bad blood when I need the support of the nurses in the NICU, but I never want to deal with this nurse again.

I hope tomorrow is better. Gesina should have her EEG so we may get some sense of what the next steps are. Until then, I'm trying to get over my annoyance and obsession with this nurse and what transpired. Grrr.

Initiating momma

Gesina was a bit fussy today but took 32 ml when I nursed her and seemed content afterwards. After they tube fed her the rest I was cuddling her and she threw it all up on me. I have officially been initiated into motherhood! The nurse and I gave her a bath and she loved it. I had to leave soon after but she was awake and alert the whole time I was there. She did sneeze 12 times in the time I was there (yup, I counted) so I'm hoping she isn't getting a cold. The nurse used a sucker thing on her nose and didn't get any phlegm so we're hopeful but adding her fussiness to the mix makes me worry. They have made the NICU a parents only zone on Thursday due to the cold and flu season (sorry everyone who likes to visit!). I do know there was a baby who had a cold in my pod but was moved out a few days ago. I REALLY hope Gesina doesn't get her cold but I guess it is inevitable that she will get a cold eventually.

I did mention the feeding more often and smaller amounts idea to one of the nurses. She said she wondered if the doctors would let her feed on demand but then did the math and mentioned that Gesina wouldn't get the full amount at the rate she's feeding. I'll bring it up tomorrow to another nurse until I get one of them to ask the doctors. Of course, tomorrow I could also ask one of the doctors myself! She is getting much better with a pacifier too so I think she's getting closer to feeding the way they want her too. The next time they put a feeding tube in I may do it (gulp!). But by doing it on my own, I'm that much closer to convincing them she can come home.

Catching up on my to do list

A few days ago my check engine light came on in my car so today I brought it in to the shop. I now have a loaner car until Wednesday and even more debt on the horizon :-( I say more because when the new year hit, the deductible on my health insurance reset so the last 35 days have been the most expensive days of my life. I can't say I wasn't warned as everyone says that children are expensive!

Beyond that drama though (and the back and forth from the car place to the hospital), Gesina had a busy day. She saw the physical therapist which exhausted her. The neurologist said he is pleased with her progress on the two drugs she is on and she is going to get a repeat EEG on Monday. The attending physician is happy with her feedings EXCEPT that Gesina has a few good days and then has a "light" day where she is fussy and won't eat much and has to be fed by the feeding tube. Today she had another inconsistent day where she got 44 ml (out of 110 ml) by nursing at one time then only 24 ml (again out of 110 ml) the next time and fell asleep. My guess is she likes to eat small amounts in quick bursts and isn't into the large amounts spaced over longer periods. She's all about fitness and keeping her metabolism up :-) Also, the nurses do an assessment before they feed her. So that means she wakes up, gets poked and prodded, and THEN gets fed. By the time she gets fed, she is really hungry and not to happy about all the poking and prodding. I think these things add up to Gesina being fussy and at times, difficult to calm down enough to eat successfully. I'm not her doctor, however, so I'll follow their lead. I can't wait to get her home so I can feed her every 2 hours instead of the every 5 hours they do now and test my theory. 

The other things I did today was take an infant CPR class; I hope I never have to use it! I also filled out some of the discharge paper work so I'm ahead of the game (we can't get our hopes up that this means anything as the nurse just wants me to be ready when the day comes). Now, if Gesina were to come home next week, I hope it's after I get my car back on Wednesday as I left the base for her car seat installed in my car. I have to have it checked to make sure I installed it correctly but I can't do that until I get the car back. Oh, and of course I left my garage door opener in the car... 

5 Weeks Old

Gesina is 5 weeks old today and we had a nice "normal" day. Our version of normal is she ate well using all three forms of feeding, we snuggled a little, and I got to give her a bath in a tub! She seemed to like the bath and I like to think it helped that I was the one giving her the bath. I have a picture with a privacy band so she can maintain her modesty!

We did get some blood tests back and they were all in the correct direction (normal or amounts within the appropriate levels). We get more tests back about the metabolism of enzymes in the days to come. In the meantime, she is now 9 pounds and 7 ounces! My little butterball <3

Sleepy baby

When we first arrived Gesina was a little crabby so her feeding didn't go very well. Then she saw both the physical therapist AND the occupational therapist (a newborn has an occupation, go figure!) so she was too exhausted for her next feeding. In fact, she was so sleepy that she wouldn't even try to nurse or use the bottle. Her appointments with the therapists went well though. I was warned by the lactation specialist that there would be good and bad days so I should focus on long-term trends, not short-term events, so I'm not discouraged. 

I do think her general sleepiness today made me sleepy though! I need a day to rest but more than that, I need a day to catch up with errands. I have phone calls to make and my car's check engine light is on... Because I don't even have time to manage life, I have no idea how I'm going to manage going back to work next week. Gulp! 

Today $#it got real

Before I begin this story, I will start by saying that Gesina is fine. 

This morning when I walked into the NICU there were doctors everywhere. They were centered around the technology room; so much so that they were crowded around the doorway outside the room. When I went into pod B where we reside, I saw some of the nurses and lightheartedly mentioned that there is a party out there. One nurse, with a very serious face, mentioned that there was definitely not a party but she can't tell me what is going on. Based on the tone of the room and after watching the doctors slowly drift away from the technology room (one older doctor was patting the shoulder of a much younger doctor), I realized that a baby had died. I have no words for how this made me feel and still makes me feel. I have no idea how these professionals do this job but I was given a big dose of perspective today. My Gesina is alive, at the end of the day, that is all that matters. I'm already a lucky mom and everything else that Gesina accomplishes is just gravy.

As for Gesina today, she was a rock star. She worked with the speech therapist and drank 60 ml from her bottle and they were very pleased.

*** NON PARENT GROSS OUT ALERT *** CONTINUE AT YOUR OWN RISK ***

With the help of a lactation consultant Gesina tried a third way to eat, breastfeeding! I was worried that giving her a third option would really confuse her but she latched on and went to work. The lactation consultant was in awe :-) They weigh her before I feed her and after to see how much she drank. She drank 40 ml the first time and 45 ml the second time. She didn't fall into any of her odd bottle habits either (for example, she shakes her head from side to side without latching on to the bottle). Instead, she fed and then contentedly looked around in a sleepy manner. Now if we can get her to choose a method and finish her whole feeding that way, we'll be closer to getting that feeding tube out! In the meantime, all the work of breastfeeding put her into a nice calming sleep. We were all very proud of her today. In the meantime, I'm learning about feeding tubes just in case. I hope I won't need it but I'll do what it takes to get her home when she's ready, of course.

Staring at Papa

We did end up going to see Gesina today. She was awake while we were there for the first time in a few days. She just stared at Adrian. I can't help but wonder what she was thinking but she seemed content to stare into his eyes. Tomorrow I get to spend the whole day with her while Adrian goes to work. I'm looking forward to spending as much time with her as I can tomorrow; I just have to remember to stop and eat lunch while I'm there! Time seems to stand still for me in the NICU when I'm watching my little girl. I feel I could stay there forever and be content. Then I look up and realize I hadn't eaten in hours, the roads are treacherous and I should be heading home. The good news is the NICU nurses know this about me and tend to keep on me about such things. On our first day at the NICU Adrian asked our nurse why she chose this profession. She said she does it for the babies and the families. I get that now. The NICU nurses don't just take care of the babies; they train the moms on how to care for their babies and make sure the parents don't forget to take care of themselves. I really have to think of a way to thank them when this is all over with and I have Gesina home with me.  

Revolving door, part 2

So today the other two babies in Gesina's "pod" that had seizures were gone. They got to go home and while I'm a bit jealous, the nurse assured me that time spent in the NICU is not related to the babies outcomes and/or prognosis. So after giving myself a pep talk, I focused on the fact that Gesina will spend as much time in the NICU as she needs. Today she slept the whole time I was there but I got to hold her and she is doing really well on the bottle feedings. She is now taking about 55-60 ml of her 100 ml feedings by bottle. That is a big deal and we are all pretty excited.

Tomorrow the weather is supposed to be in the negative temps so I'm not sure I'll make it in to see her. Adrian is determined but I'm a bit worried as my check engine light is now on and his change the oil light has been on for a week or more. We need the weather to straighten up so we can take care of all these random life issues now that the holidays are over. Time to catch up on all that we've let go during the beginning of this journey so we can start to think about when Gesina will be home!

Sleepy girl

This morning they struggled to get blood from Gesina (it took 3 nurses and more than a few pin pricks) so by the time we got there, she was exhausted and slept the whole time. They are running tests to see if she has any metabolism problems. This the final domain to check as a cause of her stroke and seizures. We hope the tests all come back negative as there is no cure for any metabolism issues. I'm trying not to hold my breath on this but as Sagesmoon has noted, I'm a mom and that is just what we do ;-) Even in her sleep though, Gesina was adorable and I got to hold her. She spends a lot of time stretching and today, smiling. I know its still just gas that makes her smile but in another 2 weeks, they say her smiles will be genuine. I figure I got a sneak peek at what she looks like smiling and it made me happy.

Thanks again to everyone for supporting me through all this. Your comments have been known to make me smile and most importantly, make me feel like I'm not alone. It's nice to feel understood even if I've never even met some of you in person! I've realized that we are all connected, if not through face-to-face interaction than by being parents.  

Biding my time

The meeting was today and a lot of the information I already knew was reiterated. This is okay because the more I hear it, the more it sinks in. Most important to me at the moment is (1) what has happened with Gesina is really not my fault. Everyone tells me this but I seemed to not hear it so the more it's repeated the better. With the doctors I was able to ask more specific questions to put to rest some of the crazy theories I've dreamed up that some way or another make this all my fault. The doctors refuted those theories and maybe now I can stop blaming myself.

Another important piece of information is (2) being told her prognosis was "bad" on the first day at the NICU was a mistake and shouldn't have happened. The neurologist said only a neurologist is even close to making that determination AND she herself wouldn't even try to guess how Gesina is doing even a year from now. We don't know her prognosis and the range goes from in a wheel chair to completely fine. Based on the location of her two infarctions it is possible she may have issues in decision-making when she's older but we don't know this for sure and she could also be just fine. Because of the self-fulfilling prophecy research, I've decided she is going to be just fine and will treat her accordingly. Also, her developmental milestones will be followed rather closely by the hospital's specialists for the first 3 years and the doctors will be able to quickly direct us to the appropriate resources and therapies as needed. Because I will follow through on any and all doctors recommendations, I will again just assume she is going to be fine.

The final important point is (3) Gesina will be at the hospital at least a few more weeks. They are determined to give her more time to take the bottle for all her meals and give her EEGs a chance to get to the normal, non-seizure potentiality results. When she does go home, she will be on seizure meds for at least a year or two so they won't be messing with taking her off completely for a long while. They will have me take her home with a feeding tube IF that is what we have to do but in the meantime, Gesina is getting better with the bottle every day. The doctors are very pleased with her progress with the bottle. In fact, last night she took 60 ml of her 100 ml feeding from the bottle. And today when we were visiting with her, she was loudly sucking on her pacifier which she had never done before. We quickly swapped her bottle and pacifier and she happily drank from the bottle for a little while. So we'll see how that continues to go and in two weeks we'll see what they say.

Mentally, I understand that Gesina is getting better everyday. She is headed in the right direction on everything we've been doing and I'm very lucky. She is alive and thriving and I really couldn't ask for better. If I focus on the positives, and there are a lot of them, then life is good. For perspective, some women go through pregnancy and labor and end up with no baby. That didn't happen to me as Gesina is alive.

Emotionally, I'm a bit beat up. If I just keep moving forward everyday without putting too much thought into the situation, I'm emotionally pretty stable. A meeting like today, however, is all about focusing on the situation which forces me to slow down and process what is going on. This means lots of tears, fears, and self-pity. I'm in a very ambiguous situation and if I let my imagination run wild, well, nothing good can happen. I'm fine as long as I don't stop and think too much about it. So now I need to add some order to the chaos to manage the ambiguity of the next few weeks. I also have to keep my perspective and focus on the positive. So while I process my emotions and work on getting my head wrapped around all this, here's a picture of Gesina at 4 weeks. This is the artwork created by one of the nurses so Gesina's area is festive and is a celebration of her.

Snowed in at hospital

So we got snowed in at the hospital. I "secretly" loved it because I could see Gesina whenever I wanted to. I got to feed her and change her. I've even started to see patterns and habits in her behaviors which is fun. We got a family room at the hospital which is essentially a hospital room. Gesina seems to throw up more now that she is taking the bottle more. She is more like a newborn now that she eats, sleeps, and fills her diaper pretty consistently! I can't wait to take her home regardless :-)

Tomorrow morning is the family meeting with the doctors. Hopefully I'll know more about what is going on then and will keep you all posted. Until then, I need to make a list of any and all questions that I can dream up! Oh, and I almost forgot. Gesina is 4 weeks old today. I'll take a picture tomorrow and post it.