Cuddles with Grandma

The EEG came back the same as the previous EEG a week ago. This means she has no active seizures but she shows signs of abnormal brain activity that represents potential for having seizures. The doctor said this is normal and a good thing. The EEG didn't get worse, which would have led to increasing her meds. The fact that it didn't get better isn't a horrible sign as it takes time for the body/brain to adjust to the seizure meds and the doctor is not surprised that she needs more time. So, because her EEG is the same, her meds remain the same as well.

The nurses have all agreed that Gesina has shown improvement in her sensitivity from last week to this week. For example, one nurse said that just last week she felt that anything she did to Gesina was hurting her. This week though, Gesina isn't overly sensitive to stimuli. In fact, when we try to wake her up to get her to use the bottle, it doesn't matter what we do to her, she isn't interested in waking up and she's not mad at us for trying either. When she does cry, it's an "I'm annoyed" short wail and not the "You're hurting me and I'm scared" inconsolable cry she would use on the nurses last week. So this is good. She is also making progress on using the bottle. I'm really hoping we get the bottle situation figured out as the idea of putting her feeding tube in doesn't make me particularly excited. I'll do whatever I have to to get her home though.

In other news, grandma got to hold her today with minimal drama! Her grandpa got to see her eyes, her cry, and even a smile (yeah, not really a smile but we can believe what we want). Adrian and I have a family meeting on the books for Friday morning so hopefully we'll have more of a sense of what happened, what is happening now, and what the near future holds. We are planning on meeting with the neurologist, hematologist, and attending physician. I'm looking forward to seeing her scans, etc. with an expert so I can begin to wrap my head around what my baby has gone through. I'm just hoping that education is power in this situation!

No news yet

Still waiting for results of the EEG so I'll post those tomorrow. In the meantime Gesina had a long day of giving the nurses a hard time and recovering from getting the EEG goo washed out of her hair. She saw the speech therapist and has drank 30 ml from her bottle a few times now. The speech therapist is pleased with her progress so far. Because of her long and busy morning (EEG, hair washed to get EEG goo out, pulled her feeding tube out again, speech therapy), she slept pretty much the whole time we were there. Grandma and grandpa are hoping to catch her awake tomorrow. I got to hold her so I had a good day.

Lies, all lies

Adrian and I took shifts to see Gesina today. He took the morning shift and I took the afternoon shift. He CLAIMS Gesina was crabby and inconsolable in the morning; so much so that it took two nurses to calm her down at one point. I think he's making it all up because with me, she was a sweetheart. Sure, she may wail once or twice but I could still talk her out of it. He often points out that the only thing that calms her down is my voice and I think he may be right. I may make a tape of me reading a book to her so the nurses can play the tape when she needs to calm down.

I got to help give her a bath today and boy does she dislike baths! I think she gets cold (remember the shivering) so that may have something to do with it. She also ripped her feeding tube out of her nose today. This is a theme with her as she often has her hands near her face. The nurse declared that I will likely be taking her home with a feeding tube so she showed me how to put one in. Gesina is not fond of that process but I'll do whatever it takes to get her home! I like that the nurses have mentioned me taking Gesina home but I try not to get too excited. Tomorrow's EEG will hopefully give us some answers about what needs to be done next.

This morning a baby went home and while the nurses were changing the sheets on the bed, a call came in that another baby was being admitted. The cycle never ends. The new baby is another full term baby with seizures. I guess this means that these doctors and nurses have a lot of experience with babies that have seizures; though I hate to see more babies and parents going through what we are all going through.

In addition to getting her EEG tomorrow, Gesina gets to see her Grandma and Grandpa. I'll be glad to have them there as we learn what her test says and what it means for the future. Hopefully they get the EEG done early and get us results soon. I guess I have to continue to work on being patient!

Learning

Gesina took 25-30 ml from the bottle at least 3 times in the last 24 hours. She's learning! The nurses have told me a few times that Gesina is very sensitive to stimuli. She'll cry from diaper changes, getting her temperature taken, sudden noises, being picked up, etc. The nurse today said this is common in "neuro" newborns. This makes me a little nervous about when I get her home. Not only will I have to learn how to take care of a newborn, but I'll have to learn how to take care of a NICU "neuro" newborn. I keep trying to remind myself that I have to learn to take care of Gesina and not worry so much about what's normal and what is more related to her seizures. I guess I'm a little scared and either way, I have a lot to learn too.

Today I did get to introduce myself to the other mom in the NICU whose baby has seizures. I was in the breast pump room which has two curtained areas. I heard sniffling from the other curtained area and once I realized who it was, I decided I had to say something. She had just given birth 2 days ago and seemed to really appreciate my story. Her baby only needed 2 meds to calm the seizures so I think the fact that Gesina needed 4 meds and is stable now was good for her to hear. She also asked me a lot of questions about recovering from childbirth. It felt good to share information that I knew would make her feel more confident and less anxious. I also realized that I'm a bit of a veteran now myself. Not a club I asked to join but glad I could calm the mind of someone going through what I've started going through just 3+ weeks ago.

Calm day

Adrian decided I needed a change of scenery today so I spent a lot of today with friends. I had a good day and it was a good idea but I also spent as much time with Gesina as I usually do :-) She had a busy day fussing at me and the nurses! I'm told she is acting more like a newborn which scares me a bit but also excites me.

She is still practicing using a bottle but it is slow going. She drank 5 ml with the speech therapist, 1 ml with a nurse, and 10 ml with me. No one else can match the patience of her momma!! I tried to distract her, encourage her, and model the right behavior. My guess is I put more time and effort into it than the therapist but I MIGHT be biased :-D A new baby was admitted today with seizures and the parents looked as weepy and scared as I did on day one of the NICU. I plan on keeping an eye on them and helping if I can. A few babies have gone home so it's fun to keep up on who is coming and going. You start to root for them and their parents as you watch them get used to life in the NICU. It's an amazing group of people who chose to work with newborns and their families. I couldn't be more thankful for their help and support through all this.

3 weeks old

Today was much better so thank you all for your words of encouragement. There were much needed and much appreciated.

Gesina had a busy day today. She had a hearing test (she passed!!), a visit with the physical therapist, and a visit with the speech therapist (still working on getting that bottle figured out). In the meantime, she snuggled with her momma for 2 hours!! When she was awake, she would look around and sometimes make the sour face. She could be talked out of the sour face though. I did get a little choked up when I had to leave for the night but I'm pretty sure these are good tears. Progress is being made, my baby girl has had a lot of good days awake and she is headed in the right direction. Saying anything positive still makes me a bit superstitious but I'm trying to fight that silly urge. She is doing well and that makes me happy. So I'm going to work on enjoying the happy!

For her treatment, she is going to get an EEG on Monday to determine what else they are going to do with her 2 remaining meds. That seems like a long time from now but I really do like this "taking it slow" approach to dealing with her seizure meds. The other baby from the same hospital who also had seizures went home today. I got his mom's contact information so we can keep in touch.

Courtesy of Amy, here is a photo that represents a milestone for Gesina... the day when the nurses have finally given up on her hair! We fondly refer to all messy, spiky hair as Gesina hair :-) I figure it will grow and the weight of it will pull it down. One nurse likes to style it into a mohawk which is a very amusing solution to the problem of "Gesina hair."

Gesina's first Christmas

Today had its challenging moments for me. All the hoopla of Christmas, with the "Merry" expectations that every moment is supposed to be special made it very easy for me to feel sorry for myself. Any other day I have been able to see clearly and am grateful for all the progress that Gesina has made. But because of the unrealistic expectations that society has surrounding Christmas, that today is supposed to be Merry, you are somehow broken if you are not filled with the Christmas spirit, if you are not surrounded by family then you are "doing it wrong," well this has really gotten me down and caused me to be emotional today. I had such an overwhelming urge to take Gesina home today. I just wanted to grab her and run to the car. It's so unnatural to have a baby and then leave her with someone else, night after night. But here I go again, feeling sorry for myself so the pity party is over. Now back to being grateful for all the good things going on with Gesina.

Gesina had another stable day. She slept most of the time and because she was in fleece Christmas footed pajamas, she didn't shiver! She didn't spend all of her time awake crying but she would make the sour face often. I have to teach that girl how to smile so she realizes she has more than one option for facial expressions! We worked on trying the bottle again today but she gets bored with it. Hopefully the speech therapist shares some tricks to encourage her to use the bottle. The nurse says it takes time so I'll work on not obsessing about it. No change to her meds today. I haven't talked to the doctors in a few days so hopefully I'll be able to get some updates on our plans for her meds tomorrow.

And finally, the ridiculously amazing people surrounding the NICU gave Gesina presents. She got wrapped toys, clothes, and books. I have to remind myself that these caring, supportive, and giving people are really what Christmas is supposed to be about. Not the pressure and feeling that the universe owes you an amazing day and if it's not amazing, then the universe doesn't like you. Everyone has good and bad days, even on Christmas; it'll all be okay and next year, hopefully I'll get a good one. If not then maybe the year after. Plus, Adrian reminded me that in the future, I'll have Christmas as a special day, just like everyone else BUT I'll also have the date that Gesina came home. That will be a special date just for us.

Sleepin' and weepin'

Gesina spent the day either sleeping or crying (but mostly sleeping). I did hold her but she wasn't as easy to "talk out of" crying today. She also had a visit from the speech therapist who worked on assessing her ability to drink from a bottle. She has all the technical skill but we need to work on helping her put it all together. Other than that, it was a quiet day and she is officially now only on two meds. 

I did meet another new mom today who gave birth at the same hospital as me only 3 days ago and her son had seizures at birth too. It only took one med for her son to stop seizing. Maybe I'll have someone local to talk to who understands what I'm going through. In the meantime, here is the picture of Gesina with Santa for your Christmas enjoyment.

First Bottle

Today I was a very lucky girl. First, I arrived to see Gesina wide awake and looking around calmly. When I talked to her she would look so deeply into my eyes it was just amazing. So we had a nice chat full of girl talk that I'm so grateful for that I'm tearing up as I type this. Then, the nurse decided that since Gesina doesn't have any respirator/breathing apparatus, that now is a good a time as any to try out a bottle for the first time. A bottle is a BIG DEAL. The neurologist had mentioned that we may know more about the extent of any brain damage when it comes time to take a bottle. Also, taking a bottle is a step towards her going home as she has to be able to eat when she's home (and preferably not from a feeding tube). So when the nurse gave her the bottle, she had to work through Gesina's initial "sour face" and confusion, but eventually, Gesina realized the awesomeness that is food! She didn't take her whole feeding through the bottle but she took some of it that way. Here she is with her first bottle.

Santa came today as well so I will have a picture of Gesina with Santa that I'll post tomorrow. And finally, I got to hold her today and because she has fewer tubes and needles, I held her right up to my chest near my heart. She stopped shivering and slept calmly. I have proof that it was good for her as her monitor has never been so steady. My heart is bursting with love and gratitude tonight. I couldn't find the words to describe my joy if I tried and as any one would tell you, I'm rarely speechless.

Jitterbug

I realized that my first present to Gesina, my focus object during labor, is a lady bug that when you pull a string, jitters up the string. Hard to explain but she has her present with her now, has opened her eyes and watched it jitter today, and because of her shivering still, I know call her jitterbug. And yes, I do think of Wham and the infamous song "Wake me up, before you go go/Jitterbug". It suits her very well but I still cringe when she shivers because I want to warm her up and fix it!

Today Gesina had her central line taken out because she is no longer on IV nutrition. She also has a very tender and red "rash" of some sort on her upper back. The doctors think it could be related to the central line so that is another reason why they took it out. Now we wait and see if it goes away on its own. If not, the doctors are not sure what it is or what it is from :-(

Gesina is also going to take her last "weaning off" dose of the 3rd seizure med tomorrow morning and so far, she hasn't had any seizures. She also let out a real cry today! I talked her out of a few sour face "about to cry" moments but when I wasn't near enough and the nurse messed with her, she wailed once or twice. While her eyes were open more today, she had a tendency to roll them upwards so all you see is the whites of them. She did this as she was obviously drowsy but they still scared me a bit and I'll ask the doctors about it tomorrow. My hope is it's just part of the sedative effect from her meds but I'm still going to worry about it. Maybe this worrying about the shivering and her eyes is just me making up something to be anxious about. I'll try to focus my attention on the positives, like the fact that she has had a great few days!

Shiver me timbers!

Gesina still shivers a lot and the nurse and I continually go back and forth on whether or not she is cold. I did get to hold her and when the nurse isn't looking I put the blanket on her... and the shivering stops :-) She is trying really hard to cry too. Her face turns red, bunches up, and she makes an adorable squeaky noise! It's too cute but I'm hoping that soon enough she'll be wailing like all newborns do when they cry. Until then, she's just adorable when she is mad. Adrian pointed out that when she gets upset and wants to cry, as soon as she hears my voice she calms right down. I paid attention and realized he's right. Amazing how something so simple makes me feel so important!

Beyond shivering a lot, Gesina also stretches and shakes when she stretches. The doctors and nurses agree though that she is NOT having seizures and they are working on teaching me and Adrian how to tell the difference. Medication wise, they are still slowly weaning her off one of the 3 meds and so far, knock on wood, she is doing fine with that. I am still waiting for the "other shoe to drop" but am doing my best to enjoy my time with her and not let my anxiety take the fun away from the good times. Tomorrow she may get to see her grandma and grandpa so I'm hoping it's a good day. In the meantime, I realized that there should be more pictures of Gesina so here is my favorite so far.

Sleepy day

Today Gesina slept a lot but she did cry for me once or twice. I acted much like a new mother and tried to not freak out as I tried to figure out what she wanted. I'm pretty sure she was hungry because shortly after we started her feeding tube she calmly went back to sleep. I can tell I'm really going to have an adjustment when she is fully conscious and finally at home with me.

She is completely off the emergency inhaler seizure med and they are weaning her off another of the medications slowly. So, this will leave her with 2 meds one of which they had increased earlier. No seizures today but she has been officially referred to as a "fidgety" baby by the nurses and doctors. She was shivering today which made me nervous until I, um, put a blanket on her... To my defense, the nurse was convinced she wasn't cold but that mother's intuition, er, common sense told me that she was just cold. She is also off the IV nutrition but she still has her central line. I have started the process of setting up a family meeting with the neurologist and the neonatologist. I'm hoping that I can organize my thoughts and come up a list of all the questions I've had lately. I'm also looking forward to getting a recap, again, on all that has happened and why. Also, where we go from here and, gulp, a prognosis. I am going to ask what factors made her prognosis "bad" on her first day in the NICU and how those have changed so her prognosis is now not as "bad". I don't want to dwell on that bad prognosis but I think I need to put it in perspective so I can process it. That was a bad day for me and I think I need some closure!

In the meantime, Gesina is gathering a pretty large collection of Christmas gifts. These gifts often come from family of previous patients that have either survived or had not survived. The people that make these gifts are amazing and I wish there were a way I could thank them. The only thing I can think to do is share the gifts with everyone. So without further ado, here is Gesina wearing her holiday hat!

The revolving door

Today a new kid arrived with wide-eyed parents starting the journey of the NICU, while another preemie got to go home. I hate to see the new parents arrive with mothers still sore from the very recent birthing experience and new fathers wide-eyed and unsure of what happens next. I want to hug them and tell them it will all be alright but there are no guarantees in the NICU so I just share a supportive smile if I get the chance. I do love seeing the babies go home though. I'm jealous but it helps to see others make progress and get the heck out of the NICU!

Gesina was taken off her emergency inhaler seizure med today and I didn't see any seizures. She was also increased on one of the other three meds. I keep waiting for the other shoe to drop and the seizures to kick in but so far, so good. The doctors have increased her feeding and tomorrow they are going to take her off the IV nutrition. This means she will only have the central line and no other needles in her hands and feet. I did talk to one of the doctors who reminded me that there are ups and downs and to not get discouraged. I decided that I'll focus on not getting anxious about the bad things that could happen either... this is easier said than done though. 

On the positive side, she was a bit more alert now that she is off the emergency seizure med. She tried to open her eyes a lot more and she really would have cried about being hungry and having a dirty diaper if she could have. Her little face turns bright red and crumples up but when she opens her mouth, nothing comes out... yet. I did get to hold her and she kept yawning, stretching, pushing her feet against my hands. I like to think she was doing some leg presses to build up her strength but I'm sure she was just filling her diaper! Either way, holding her calms us both down and I left with a smile on my face. My little girl is 2 weeks old and maybe, just maybe, tomorrow she'll be awake and able to show me more of her personality. I can't wait for her to give me a hard time (you can remind me I said that when I'm up for a 3 am feeding with a crying baby)!   

Things I'm grateful for

Because today was sunny and a balmy 30 degrees, I was thinking about all the things I'm thankful for. I figure counting my blessings can only help keep my spirits up and add perspective on what I'm going through so here are a few things I'm grateful for.

• Gesina and I made it through labor and delivery alive. As long as we are alive and kicking, we can fight to survive and be together. Some are not as lucky as we are.
• Even though he has had to work, Adrian has been able to see Gesina everyday with me. Some men in the NICU hang out in the lounge and don't go to see their little one as often. I'm grateful that Adrian is in there with me visiting with Gesina and understands how important these visits are to her growth and recovery.
• NICU nurses are amazing people. They take care of my little girl when I'm not able to do it myself. I'm often jealous of them for being able to spend so much time with my little girl but knowing I can't be there myself, I'm grateful they are there every minute of the day.
• I live close enough to such a great hospital with well-regarded doctors. The nurses and doctors talk about my Gesina's neurologist like he is the best in the business. Having talked to him myself, I'm very confident in his abilities. I'm glad I live close enough for Gesina to go to the best in the area and that I don't live in such a small town that I have to drive more than an hour to see her everyday. 

So there is my list today and there are lots to be grateful for. Today Gesina got to enjoy sleeping on her tummy, occupational therapy (mostly a deep tissue massage), and her emergency inhaler seizure drug was lowered another half step. My positive side hopes to have a good day of no seizures tomorrow but my realistic side knows that because we are slowly weening her off some of her seizure meds, I'll likely see seizures tomorrow. Instead of worry about tomorrow, I choose to smile about the good things today. She was calm, looked good in her clothes, and enjoyed a massage. Today was a good day. 

Bath time and snuggles

No changes to Gesina's meds today so no signs of seizures. She did seem more sedated today compared to yesterday. I got to take advantage of her being sedated and helped give her her bath. I have no idea how I'm going to be able to give her a bath and change her diaper when she is wide awake. You can see her face pinch up a bit when we washed her hair so if she could, she would be crying and pitching a fit. Sadly, I can't wait for her to pitch a fit! I would much rather have her be sassy and giving me a hard time than being sedated and drowsy. Oh well, I need to practice being more patient.

Her breathing was a bit shallow and fast today. They took an x-ray to ensure she didn't have any congestion in her lungs. Thankfully there was nothing in her lungs but it was a bit unnerving to hear her breathing that way. We adjusted her breathing apparatus a little and I got to hold her for about an hour and a half. I don't know if it was the breathing apparatus or me holding her but she seemed to have more steady breathing during that time. Oh, and the nurse said Gesina had tummy time earlier today. Like any other newborn she got to have tummy time :-) Adrian got to see her suck on a binky too. These are nice reminders that some things Gesina does and gets to do is much like any newborn. Of course, as a first time mom, I wouldn't know the difference between Gesina and any other newborn's behavior but I just don't want her to miss out on anything. Because she's been wearing clothes now for the last few days, tomorrow I'm going to take in some of her clothes so she can enjoy them while they still fit her... So, I guess I don't want her to miss out on anything but I selfishly don't want to miss out on anything either! Gesina will wear some of her adorable newborn outfits before she outgrows them, even if we have to cut holes in them to accommodate her wires, tubes, etc!

Calm day

Today was a relatively calm day. Gesina had another EEG which is still abnormal BUT did not seem to show seizure activity. Yay! Now, she is still on 4 seizure meds so this does not mean she no longer has seizures, it just means that we are back to stable on the meds she is on. She has also "graduated" to even less respiratory assistance. Now she has these odd metal coils holding a plastic piece in her nose. As far as I can tell, she is largely on her own for breathing now.

The fun part today is that Gesina is opening her eyes more and because she is largely breathing on her own she is able to make some sounds. She sneezed today and made some adorable squeaky noises! She even got to wear some clothes. Oh, and she now weighs 9 pounds! I love my little butterball <3

Ups and downs

Today was a long day filled with ups and downs. We had the first doctor (a fellow, so a low "woman" on the totem pole) say "when you take her home" which brought tears to our eyes. Just the idea that some day we may actually be able to bring her home was astonishing. Then my friend Amy and I went to the holiday party for NICU parents. I met a few "veterans" or NICU parents who now have toddlers who got to go home and made it through the NICU. It was more important than I realized to talk to these veterans. They really helped me see that I need to be there for Gesina with just the same level of gusto in month 4 as I am in week 1. This is a marathon and not a sprint so I really do have to focus on creating a schedule and making sure I take care of myself, Adrian and any semblance of a stable home life. They also reaffirmed that yes, there are a lot of ups and downs in the NICU. These were some of the ups today.

In high spirits we saw Gesina but then the seizures started again. We had to bring her "emergency inhaler" seizure med back up to .10 and they increased one of the other seizure meds. It is really distressing to watch her have these seizures as you feel so helpless and you would do anything to trade places with her. After seeing this and feeling a bit down, the fellow suggested we talk to the neurologist on the phone. We haven't met him yet and agreed that it wouldn't hurt to get an update from him on what is going on with Gesina. The fellow assured us that the neurologist is a straight shooter; if he thought there was no hope, he would tell us. He would also tell us if he didn't know the answer to a question as well. So once we got the doctor on the phone, he gave us a summary of where we are with everything and how we got there. It seems that when this all started, Gesina did have a few strokes and the seizures are a symptom of that. We don't know when these strokes happened but they are showing some improvement. At this point, we don't have any idea why she had these. Oddly, not knowing the cause of the strokes works in Gesina's favor. The doctor said that about 80 to 85% of the time, we can't determine the cause of strokes and seizures in newborns. The good news is, for those times without a determined cause, the probability of re-occurrence is actually lower than when we can determine the cause of the bleeding in the brain. He also said he is pretty confident that he and his team will be able to get these seizures under control. What we don't know is the long-term developmental effects of the bleeding in the brain and these seizures. With Gesina largely asleep all the time, we can't determine how well she is able to function. For example, can she drink from a bottle or will she need a feeding tube? We have no idea what damage has been done and at this point, we can only hope that she is as resilient as everyone says babies are. We also just hope the doctors can find the right cocktail to get these seizures to stop (or the bleeding in the brain will heal) so more damage isn't done.

So, tomorrow is another EEG and the doctors will regroup and put a new plan in place. I will work on getting on a schedule so I can ensure I'm at my best for Gesina everyday. The doctors' job is to find the right cocktail and my job is to be Gesina's mom. I need sleep and to organize the chaos as much as I can so I can be a good mom, not a teary eyed one! Time to mom up again...

Steady and stable

So the MRA and MRV are normal meaning there was no evidence of blood clots in her veins or arteries. Her MRI, which focuses more on brain structure, showed that the "infarctions" (doctors term) seem to be healing; especially her two major ones. Because of this, they have lowered the "emergency inhaler" style seizure medication to the level she had it at a few days ago (.10). It was a step higher (.15) so now it's were it was and tomorrow, they are knocking it down another step (to .05).

I asked why we think this change will take this time when it did not a few days ago and essentially, the answer was that her brain has grown and they plan to make the changes to her meds a bit slower. So, she's healing, is currently stable, and tomorrow we start working on the seizure medication cocktail again.

In the meantime, she opens her eyes a little bit more. I get very excited when she opens her eyes as it feels like she "can" connect with me. I realize she's a newborn and she's mostly in dreamland, but I like to imagine she and I are beginning to communicate. Fingers crossed that tomorrow doesn't present any set-backs and that she handles the medication change better than she did in the past.

Now we wait

Gesina had a busy day of getting her MRI tests done but no results until tomorrow. She opened her eyes for me and I got to hold her as well. I had a hard day emotionally though. We overheard the nurses during their change over meeting discussing Gesina. I didn't know this but when they transported her to the NICU on the day she was born, they almost lost her. This upset me even though I should be grateful she is here a week later fighting. I guess I just have to wrap my head around what is happening and allow myself to process it all in stages. Tonight, I'm struggling but I'll try to be stronger tomorrow.

Tomorrow is a big day as we learn the results of the MRI tests so keep sending the positive thoughts and prayers. Also, just wanted everyone to know that we do read every comment on facebook, this blog, and texts. They give us great comfort and I apologize that I can't personally respond to each one. Every waking moment for me is spent using the breastpump, driving an hour to the hospital, and visiting Gesina. Any time spent doing anything else is precious time away from being the mom I always wanted to be.

1 Week Old

It seems Gesina is stabilized again and on all the seizure meds as well. She is stable enough to get the MRI/MRA/MRV tomorrow at 1:30 which should give us some idea about both damage that had been done in her brain so far and looking for a cause of the bleeding in her brain. She also had one abnormal blood clotting test but it shouldn't be relevant to her current issues with seizures. When she is an adolescent, she may need to take anti-coagulants when she has surgery, etc. However, this genetic abnormality shouldn't have anything to do with her current issues. So now that she's stable, and back to being sedated, we can run more tests and start the cocktail search again.

Good news is she is 1 week old and I got to hold her for 2 hours. There is nothing more peaceful than holding my little girl!

Two steps forward, one step back

Wednesday, Day 7

I learned rule #1 in the NICU. It is very rare to make linear and continuous improvement, one has to embrace set-backs and not get discouraged or upset...

This is fine thinking and all but it was very difficult to watch Gesina have seizures today. When I was there she was having a visible seizure about every 5 to 10 minutes. Needless to say, removing the "emergency inhaler" seizure medication is not the answer today. She is back on the fourth med and I don't know her status on the third one that was given at a lower dosage. So after my carrying on and being sad, we decided that Deuling girls fight for what they want and she is just where she was about 2 days ago. No big deal, we just keep on fighting. They did cancel her MRI/MRA/MRV because her seizures need to be under control to run those tests effectively. Now we just let her rest and stabilize again so we can go back to refining her seizure cocktail.

In the meantime, here is Gesina from last night's bath. She does have eyes!

I wanna see my momma!

Tuesday, Day 6:

Sorry my post is late. I hit a wall last night and just needed to sleep. I need to start taking care of myself or I'm going to get sick and not be able to visit her and that message was received last night. But for Gesina, the day was good. Her last 3 EEGs are stable. All are still in the abnormal range but are telling us that she is NOT having any seizure activity that we can't see. This is good and they have taken her off of one of the seizure drugs. The one they took her off of did the most in putting her in this more stable place but it acts more like an emergency inhaler for seizures as opposed to the long-term inhalers we need to focus our attentions on. She tolerated that change so we've taken her off the drugs associated with controlling side effects for that "emergency inhaler" style seizure med and she is doing well with those changes too. She is now getting a reduced dose of one of the 3 other seizure meds. Next, we start the investigation for the best seizure med combination for her while we continue to try to find the cause for all this. The cause investigation continues later this week where we get another MRI with an additional MRV and MRA (MRI for veins and arteries). Stay tuned on that as all the "common" causes have been ruled out so far and now we are looking for less common causes.

Gesina is still unconscious due to the other seizure meds she's on and the doses. BUT, she heard my voice yesterday and fought like crazy to open her eyes to see me. I got to see those beautiful grey/blue eyes and assured her that while mommy appreciates the effort, she should rest and not fight the sleep too much. You could see her get more roused over the things they do to her now. A diaper change will cause some arm and leg movement. Each time she gets an EEG, so far once a day, the goop they put in her hair is hard to get out. So now when we try to brush it out, she squirms and her face bunches up. She would so cry right now if she could!! So even if she's not fully conscious, I can see snippets of her personality and she is a spunky one <3.

I also wanted to let you all know that even though I don't have time to respond, I am reading every one of your messages and comments. I gain an immense amount of comfort knowing you are all out there rooting for little Gesina. It's also been comforting to know that I'm not the only one out there experienced in "life in the NICU". There are more success stories out there than I realized and that gives me lots of hope. 

I love her and I want to keep her.

That was the phrase I told Adrian on Sunday while visiting Gesina in the NICU. He said since I let him keep the kitten, he will allow me to keep Gesina ;-) Now I'm focusing all my attention on getting her home and refuse to waste any time thinking otherwise. Also, I figured the best way to keep everyone up-to-date on how Gesina Marie is doing is through a blog. And today was a good day!

How this all started: 

Starting about 2 hours after birth (on Thursday, 12/5) I finally got to see her for the first time. As she was laying there peacefully, a buzzer on a machine woke her up and she started crying. I noticed that when she started crying her eyes were rolling upwards. When this happened the second time I asked the neonatologist if this was normal. We had already discussed sending her to a different hospital to observe her as she may have had some internal bleeding but this behavior was a little concerning. We later found out she was having seizures as a response to the bleeding in her brain.

After an EEG, MRI, and CAT scan, we knew she had diffuse bleeding (my word, not the doctors) in her brain and seizures were the response. Her number of seizures was high and anti-seizure meds were the first step. The ultimate plan is two steps (1) stabilize the seizures, and (2) figure out what caused the bleeding in the first place so we can stop it or prevent it from happening in the future.

Friday, Day 2:

It took all 4 seizure meds they have available to stablize the seizures. I'm pretty sure that because of this I was warned that her prognosis was "bad" at my first visit in the NICU with one of the many doctors on the case. I was lucky to have Adrian and my family there with me through that dicussion as that was a tough pill to swallow. I could not have made it through the day without them. With their support, however, I changed Gesina's diaper for the first time and got to hold her. My sister taught me how to "mom up" which is our version of "manning up". On this day, Adrian earned the man of the year in my book as he has been my rock emotionally. There is nothing I can't do with his support! An additional EEG showed improvement from the prior day's EEG so that was a good thing.

Saturday, Day 3:

Joe and Amy came to see Gesina and spent time with Adrian and myself. It was nice to have friends there and to show them all the things I learned from being in the NICU. I'm learning how to read lots of machines and learning how amazing the NICU nurses can be. They have made hand print cards for me and Adrian and have generally been kind and attentive teachers. The doctor's have also been pretty nice too. Always willing to explain what's going on in terms I can understand. I'm beginning to feel more comfortable and less overwhelmed.

Sunday, Day 4:

Holy snow storm! We braved the weather because we couldn't bare the thought of our little girl being alone for even one day. We like to think our visits are making her better (and everyone's positive thoughts and prayers)! We will believe that until evidence tells us otherwise. Another EEG was done this day (because I saw hiccup motions the day before and hiccups look very much like seizures) and the good news was that the EEG was better than the one before. They are still abnormal, but improved from Friday. Also, she was finally given some food through the feeding tube. To this point it has all been IV "food".  I also took the advice and encouragement of the lactation consultant and Adrian and started to use the breastpump. Sorry to all those guys out there reading this, but if this is the only thing I can do to help, then I'm on it! It's nice to feel like I'm able to help somehow.

Monday, Day 5:

My baby girl got her first breastmilk! I didn't realize I'd feel like such a proud momma but I do. Gesina has had negative test results for a viral infection and any bacterial infections so she is now off the medications associated with those conditions. She is also negative for any blood clotting diseases as a cause of her seizures so genetically, there is no cause so far. We are waiting for 2 more tests but so far "negatives" are making me feel pretty positive. Her EEG this day is again improved so they have taken her off her respirator and are looking to slowly take her off the sedatives. This means tomorrow I may get to meet my little girl because she'll be conscious! They are also going to start adjusting the seizure meds to figure out the cocktail that continues to keep her stable while we simultaneously look for the cause of the bleeding in the brain. My figures are crossed that step 1 of stabilizing her seizures is in place so we can continue to focus on step 2. Either way, I can go to sleep tonight with some real hope. 

Keep up the positive thinking and prayers!