Thursday, July 30, 2009

What Comes After B??? Well A Of Course!

Miss Ella is now spending her third night in her new digs. When we left Ella on Monday night she was safely tucked in her isolette in intensive care nursery B. When I called to check on her on Tuesday morning they couldn't find her in nursery B (this made my heart skip a beat or two!). They soon tracked her down in intermediate nursery A! They had been talking about moving her for a few days and we were warned that we should not be alarmed if we came in and found that she had been moved. Now this doesn't mean that Ella is going home any time soon but it is a step in the correct direction. What is really means is that she was the healthiest in nursery B and they needed the room. Monday night a set of 25 week triplets arrived causing much activity and need for some space.

So while we are happy to have moved up in the NICU world it is hard to be low baby on the totem pole in nursery A. Ella's alarms go off more than the other babies and it is so hard to see the other Moms get to give their babies baths in real tubs and breast feed their babies. I know we will get to this point but I yearn to have some of those normal mommy moments. I am trying to be patient but it is so hard!

Ella is still having her spells but she did much better for the first part of our visit today. She didn't spell for her entire kangaroo care time which was so nice. They changed her feeds last night and upped her calories but lowered the volume. It seems that Ella is suffering from a common problem of preemies, reflux. As her very little tummy gets full the muscle that keeps her stomach closed off from the esophagus is pushed open by the pressure of her full belly. This forces acidic stomach contents up and since Ella doesn't know how to swallow yet her response is to drop her respiration causing her heart rate to drop (a spell). By decreasing the volume the hope is that she will reflux less and thus spell less. It seemed to work pretty well. Both Shazam and I look forward to the spells being a memory.

Next week we have an eye exam to check on Ella's retinas and perhaps some pretend breast feeding. Since taking all her feeds by mouth is one of the criteria she must meet to come home this is a step in the right direction.

So what does Ella need to do (or not do) to get home? To get sprung from the NICU Ella must be able to maintain her temperature in an open crib, have no spells for 5 days, and take all her feeds by mouth (breast or bottle). There is no longer a weight requirement so I would guess Ella will be coming home under 5 lbs. She of course is working on all of this and we will be aiming on getting home by her due date (although we are hoping she can come home a little before that).

Ella was 2 lb 9.5 oz this morning. She has been gaining about 15 grams a day. While we would love to see slightly larger gains slow and steady seems to be Ella's way so I guess there is no rushing her. She does seem so much bigger then when she was born. I know it seems crazy but she just seems so much sturdier.

Keep those positive vibes coming our way as we both need and appreciate them. Thanks for coming on this journey with us.

Sunday, July 26, 2009

About the same

So Ella is holding her own for the most part. She has lost weight over the last few days. This following several days of gain. This is so frustrating. She did stop receiving IV fluids and nutrition so I think this is probably why. They will be increasing her feeds and calories and I hope that helps with her weight gain. I can't wait for her to be on the flip side of 3 lbs. I don't think that will happen for the next few weeks though. One step forward 2 steps back, or so it seems here in the NICU.

Ella's spells (drop in heart rate under 100 bpm) seem to be reducing. She had only a few quick dips last night. She seems to be having them at the ends of her feeds so they may be switching her over to feeds every 3 hours instead of every 4. This will mean smaller meals at greater intervals. This could help with the spells since her belly won't get as full and may allow her to digest her food better. It will mean more care times which disrupt her and take away from her sleep. There are pros and cons to both options. We will see what the Drs decided when we go in this afternoon.

Last night we got to give Ella a sponge bath. It was really fun and it was nice to see her in all her naked glory. The nurse took all her leads off so she only had her g tube and no other wires or tubes. She seemed more like a regular baby (just one with no ass). Now that she doesn't have her IV in she will be able to have a tub bath next time. I can't wait.

Ella is still in the intensive nursery. They had been talking about moving her to the intermediate nursery on Friday. They have not mentioned it again so I am not sure what the status of a move is. The nursery she is in is extremely busy with some really sick kids in there. The intermediate nursery has fewer babies and less needy ones. Ella is one of the healthier ones and I would love for her to get healthy enough to move. Once she is stable for a while in the intermediate nursery we could start considering moving Ella to Newton Wellesley Hospital. This will be a hard decision since we really trust the Drs and nurses at the Brigham. It will be hard to move but would be so much more easier to visit her since it is about 5 min from our house. I shouldn't get ahead of myself though. We will cross that bridge when we get there and we are at least a week or two away from that anyway.

Shazam and I are trying to hang in there but this is a grind and we both are not sleeping. It takes us both hours to fall asleep and then when we finally do the alarm rings for me to pump. Then we repeat. It will all be worth it when Ella gets home to us and I am producing tons of milk so that is good. I in fact have had to start freezing milk at home as my hospital space is full. This is good since Ella will probably come home only taking 2 feedings a day by breast and the the other feedings will be bottles of enriched breast milk. It will be good to have a stock of pumped milk when we have Ella home.

Well I have to jump in the shower so I can go visit the girl.


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Wednesday, July 22, 2009

When The Going Gets Tough...The Tough Watch Lifetime

So I have been off the blog for a little while. Partially because I am trying to heal and partially because writing about all of this makes it feel real. Oh how I wish that this was just a bad dream and I will wake up from this nightmare and find Ella safe inside my belly instead of miles away in the NICU. But this is our reality now. This blog is no longer a record of the fun preparations and arrival of our baby. It now is the slow progress of a tiny little baby on her road home to Shazam and I. I used to have a plan and a direction now we live moment to moment and I jump every time my phone rings.

To keep myself sane I have found myself watching lifetime movies...all the time. I think it is the mindlessness of them that I like. I don't have to think, you can pick up on the plot no matter what point you start watching (which is good when you are up every 2-3 hours pumping in the middle of the night), and it is nice to just get lost in the crazy situations that these movies present. It is my escape. I would say it is healthier than some other options so I am going with it.

One of the things I am really struggling with is the balance between getting rest and pumping. Ella is now eating (though her g-tube) every 4 hours. She is up to 23 ml of breast milk fortified with extra calories. So one of the few things that I can do for Ella is provide food for her. The lactation consultants want me pumping every 2-3 hours with one 4-5 hour break at night. This means that if I pump at 10:30pm I can take a break and sleep until 3:30 and pump. I should then get up at 6:30 at the latest to pump again to get back on the 2-3 hour schedule again. I know that this is what happens when you have a newborn but it is just so lonely to have to pump and not have your baby there with you. It is in the middle of the night that I miss Ella the most. That and my shear exhaustion is making this schedule so hard to keep up with. Since it takes about 30-45 min. to pump and clean up I am not really getting a full 5 or 3 hour stretch of sleep. I slept through the alarm at 6:30 yesterday and Shazam just couldn't wake me up I was just so exhausted. I am doing pretty well on my output and most times I produce about 60-70 ml of milk per pumping. In fact the nurse told us the other day that I should freeze some of my milk at home since she has so much right now in the NICU. So at least I am doing one thing well for my sweet Ella.

Ella is doing ok. She is very small for her gestational age which the Drs are concerned about. She should have been about 3 lbs at birth and this makes her case a bit more complicated. She is still having spells where her heart rate drops. They are not sure what to make of them and she is keeping her oxygen saturation up and doesn't seem to be dropping her respiration rate. She also gets herself out of them on her own most of the time, sometimes in a fraction of a second. We are hoping she outgrows them soon. She may have to go back on c-pap if they continue and I am fine with this. Her pda (heart murmur) has resolved itself. They thought that they heard it again the other day but it turned out to be a pfo which they do not treat and just monitor. I have not been able to talk to the Dr about it yet but from what I have been able to find of the web it seems that 80% of all newborns have this and it closes on its own. I hope it does, the thought of heart surgery makes me sick to my stomach. She is doing well on her feeds now that she has started pooping and her poop today was yellow so it seems that she has gotten all the merconium out of her system. She is a feisty one and lets the nurses know when she needs a diaper change. She got us all laughing last night during her care time as she went through three diapers since she started pooping in the middle of her change...we kept thinking she was done but she just kept going. I guess that teaches us to be careful for what we wish for! She is a whopping 2 lbs 9 oz this morning! Over 2.5 pound is so exciting! I am looking forward to her being 3 lbs as that seems so much more sturdy and strong. Oh the fun of a preemie when 3 lbs seems big.

One of the exciting changes is that Ella can now where what my grandmother in law calls street clothes. Since she is so small she doesn't fit into regular preemie clothes yet which go from 3-5 pounds. She will get there and we are really looking forward to being able to use the couple of preemie outfits we have now. She is currently fitting into what they call micro preemie clothes. There are several websites that we have found that offer these clothes and ordered a couple of shirts and a hat. So yes even when your baby is under 3 lbs you can still shop for your cute little girl. We found 2 great websites to buy clothes and with Shazam holding me back from buying all kinds of cute outfits we bought Ella 2 shirts and a hat to start her wardrobe. I couldn't figure out how to get pictures but you can see what we bought at the Early birds website. We got the organics t-shirt and hat and one of the sunny day isolette suits in pink of course. I can not wait for the clothes to come so we can dress Ella up! Oh the joy of a girl. My other favorite site is the Preemie store as they have some really cute things and carry our favorite brand Kissy Kissy in the micro preemie size! I also like how both these sites tell you what weight baby the clothes will fit. I will be sure to post a fashion show picture of Ella in her new wardrobe as soon as we get the clothes.

Finally our photographer from our wedding has a post about Ella and a way to get a discount on Ella's first photoshoot so go to her blog and help us out if you can. Hint the picture is of my dad's boutoniere on page 30! The last day is today so if you could help us out we would appreciate it!

Ella Week 2

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Tuesday, July 21, 2009


I'm sure like most if not all NICU parents, SSG and I are still adjusting to everything from our daily routine to the ups and downs of NICU babies. We tend to try to sleep in and have restful mornings and then go in for a visit in the afternoon/early evening. At this point it seems to be an okay schedule. We're exhausted all the time so I'm not sure it matters when we go in. Ella needs sleep and lots of it so it seems like a good thing to let her sleep all morning into the afternoon. Gestationally she is 32 weeks so she's still young and her brain still needs developing.

Then we have the ups and downs of Ella doing well one day and perhaps some set-backs the next. From what we've read and heard this is normal but it is going to take a while for us to get used to that. We had a family meeting with the attending, nurse, and others to go over where Ella is and what they forsee in the next week. SSG is much better at the details but in a nutshell the attending (who we call Dr. Smartypants because she is clearly brilliant) isn't happy with Ella's spells where she forgets to breath which then makes her heart rate drop. While she is off the c-pap assistance now she may have to go back on it to help with the spells. It's basically air forced through her nose that keeps her lungs inflated. They also detected a heart murmur again and the echo revealed that the cause of the original murmur is resolved this is a different original. Apparently though it's normal and they don't treat it so it should go away.  She is doing okay with her feedings though she has had some set-backs...again to be expected. The good news is she has gained some weight and is at 2 pounds 8 ounces (she was born at 2 pounds 5 ounces). 

She is hanging in there for sure but she's little so we have to be patient. This is the hardest part. It's exhausting worrying all the time and we are doing our best to stay positive while being realistic. 

Thank you to everyone's good thoughts and prayers...keep them coming! 

Tuesday, July 14, 2009

Ella Week 1

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This is me breathing...finally. I'm not sure I did that late Wednesday night through like yesterday and I still have my moments. How I didn't pass out, puke, or hyperventilate I will never know. I've more than once heard my mother say growing up, "You don't get more than you can handle" or something along those lines. Apparently I can handle way more than I thought. It's hard for me to express the outright fear I experienced on Wednesday night/Thursday morning. It's probably out of self-preservation. I can't relive it and I don't wish that upon anyone. There was certainly a moment that I honestly thought I was going to lose Sam and/or our child. I'm not religious by any means but I can't tell you how many prayers I said in my head. I pleaded. I was petrified. I was trying to be strong and encourge SSG to fight. I most certainly got angry thinking "Why is this happening?" To say I am exhausted is an understatement. I'm just so drained but I'm afraid to slow down because I may just crash. People keep telling me to take care of myself but that is easier said than done. I have a strong, amazing wife who is recovering from major surgery (who is currently having a nice nap) and I have this amazing little girl who is fiesty and strong sitting 2 floors below us in the NICU. I am in awe of them both. Truly.

Miss Ella is doing really well for her size and gestational age (would have been 31 weeks yesterday) but SSG and I are realists and know that she may take a few steps forward and a few steps back. She has been off her c-pap and breating on her own since yesterday afternoon which is amazing progress. If she gets too tired she will go back on it but for now the fact that she is barely over 2 pounds and breathing on her own is amazing to me. She is surprizing a lot of people in this hospital. Her heart murmur hasn't been detected lately but this doesn't mean it is completely gone but again it's a good sign. She will get her third course of medication to close the area that causes the murmur at 1:00am and they will go from there.

SSG and I know it's going to be a long haul and insanely hard to not bring our baby home right away. We know it is going to be exhausting to be coming in every day to the city to see her. However we also know that she is in the best place possible and her body needs to do what it needs to do. It needs to continue to develop and grow. We are just taking one day at a time and we are so proud of our little girl.

So as far as SSG goes we just talked to the attending and we are definitely staying the night. She is having a mystery symptom that no one can explain. Her legs and arms shake uncontrollably, like muscle spasms. She is not in pain or having a seizure and they don't seem overly concerned but it's not all that comforting to us. We're just trying to stay calm.

Anyway so that is the report from Boston and we will have more pictures soon!

Sunday, July 12, 2009

Why Hello There!

Sorry for the lack of updates. It has been a bit insane over here and we just got the laptop today so we can post now.

Ella Grace arrived at 1:40 pm by emergency C-secton on July 10th. She is early as you all know but doing well. She weighed in at a whopping 2.5 lbs and was 14 inches long.

I just wanted to give a brief overview of the events leading to her birth. On Wednesday I did my nanny job and was feeling pregnant but fine. I came home and Shazam and I had dinner and watched our favorite show, So You think You Can Dance. During the show I started feeling sick. I first had heart burn then felt nauseous. At about 10 while getting ready for bed I started throwing up. I laid down for a few minutes and threw up again. I was just not feeling "right" so when Shazam asked if I wanted to go to the ER. I said yes. We drove the 10 minutes there thinking perhaps I had picked up a bug or had food poisoning. When we arrived I threw up some more and then started getting terrible upper stomach pain. I made S get someone and they took me up to maternity. There they tried to get my blood pressure. The first one was unreadable. They got another cuff and I don't remember what it was but it was really high. A Dr was in my room very quickly and I have never felt so much pain in my life. They started talking about transferring me to a hospital in Boston within minutes. In the moment I didn't really get how sick I was but now I know that it was very serious. They were throwing words like stroke and seizure. I was too unstable to transport at this point and was sent to ultrasound to make sure that I didn't have hematoma on my liver. We now know that the pain I was feeling was from my liver shutting down. After seeing that my liver did not have hematoma I was transported to The Brigham and Woman's Hospital in Boston by ambulance. Shazam followed in the car. I received a steroid shot to help the baby's lungs develop and given Magnesium to help with my blood pressure (along with other drugs but I don't remember what they were). The hope was to keep me pregnant for the next 48 hours so that they could give me another shot of steroids to help the baby. They call this beta complete. It was a balance between keeping the baby in me and how sick they could let me get. I made it through Thursday (which is big blur) but at 9 am on Friday morning the Drs decided that I was too sick to stay pregnant any longer as my kidneys then started to fail. I was put on the fast track for a c-section. I was however not the sickest person on the floor and got bumped by several emergencies (this is a very busy hospital). I was taken back at about 1 and had an uneventful c-section. Ella was born and made herself known by being quite loud about her arrival and refused to let them intubate her. I can not say enough about the fabulous medical team that has been helping me out and am happy to report that I had my surgery was done by my very own McSteamy and McDreamy. My surgeons were very cute, but since my mother in law reads the blog I will leave it at that!

So where are we now...

Super Sammy G: I am feeling much better. My kidney and liver function are headed back to normal which is great and I also don't have to get labs drawn every 4 hours. I am a bit of a pin cushion. My blood pressure is still not down and I am on several medications to try to get this sorted out. They started a new one today so we will see how this works. It could take several weeks to sort it all out. My normal blood pressure is very low 90s/60s and was still close to this at my last prenatal appointment. It is now in the 150s/80s and spikes before I take my meds. The Drs are not overly concerned but are also not talking about my discharge so I am not sure what that means. I will keep you updated on this. In addition I am dealing with normal post c-section healing. Not fun but I am getting better every day.
Shazam: Has been our rock. She is taking care of our whole family and keeping me sane and healthy. I love her more every minute. She has been by my side doing what every I need (which has been a lot). From helping me pee to setting up the breast pumps. I can't even imagine how she is doing this. I also know she must be so tired. She has also been there for Ella. She is in the nursery more than I can since I am still in the wheel chair for long trips and has taken all our guests in to see her. She is a great Mommy and is so tender and loving to our sweet girl. She has held me when I have broken down and I can't imagine going through this with anyone else. She is my soul mate, my puzzle piece, the love of my life. I am so lucky to have her. Ella is too! This I guess is what those wedding vows are about huh, in sickness and in health in good times and in bad. I must say that these past few days have been all of these things. I am so glad Shazam picked me to be her wife.

Ella: Ella is doing well. She only needed to be intubated briefly so this is impressive for the peanut. She is on c-pap to help with her expand her lungs and not get too tired while she is breathing but is on 100% room air (no oxygen so this is good). She had some trouble with her sugar levels yesterday but after a small change in her iv fluids she is doing really well. They detected a common heart murmur yesterday and got an echo cardiogram today to see what is going on. They are thinking it is a duct that needs to close and will either do that on its own in a few days or with the help of medication. We get the results tomorrow and will have a plan. I will keep you updated with this. She is a little jaundiced so she is under the lights getting a tan. Once her murmur is taken care of, she is no longer jaundiced and off c-pap she will be ready to start eating the breast milk I have been pumping. She is doing really well but we are living minute by minute at this point. Shazam and I are so in love and think she is quite cute. She has a picture of us hanging in her isolette and is looking quite cute in her funny eye shades. Highlights have been getting to hold her both this morning and yesterday morning and Shazam getting to change her diaper two times. The bigger and stronger that she gets the more we will be able to do. I know you all want some pictures so here is our pretty girl!

Tuesday, July 7, 2009

30 Weeks? Really?

Yesterday SSG hit the 30 week mark and we're both pretty amazed that there are around 10 weeks left in her pregnancy. I can't speak for her but I have had moments of "Oh crap. Really? So I am going to be responsible for a small human being in like 10 weeks?" I wouldn't say I'm panicked but it's a bit more real now and slightly overwhelming. It may also be everything to me right now feels overwhelming.  It's been almost 2 months of being unemployed and I've had some dark days. If I pause to think about it I know that we'll be okay and it will all work out but at times this positive outlook gets a little buried...buried under my frayed nerves and impatience. Trying to find a way to deal with my stress has been a challenge to say the least. I'm still exercising and I'm sure it helps, but just not as much as I wish it would. I try to stay busy but being in an apartment has it's limits and lack of projects. I have a sizable painting project that will be starting over the next 2 weeks so that should keep me busy and earning some good under-the-table cash. 

Something we do have to look forward to is we're headed to P-Town on Sunday morning to stay with some friends for a couple of days. It will be nice to get away and we love P-Town. Of course we're on a tight budget but our friends live right on the beach so we're hoping for some sun. Plus I'm so pale, I'm practically glowing. 

On the nursery front we ordered the last of the items which are an area rug (chocolate brown) and the bedding. The rug should arrive this week but the bedding is going to take a couple of weeks. SSG can't wait to get her hands on that! I'm sure after a wash they crib will be all made up.

Hope everyone had a Happy 4th of July!