Bottle Time

Maria tried to feed from a bottle for the first time yesterday! We were all so excited! Even Dr. Balsan came over to our corner to watch the big event. Her nurse Lauren fed her. Maria drank 7 cc's of her feeding from the bottle before she just got too tired to suck anymore. We are so proud of her.

Maria is also growing quite well. She is up 50 grams this morning. I feel like she is sailing through the 3 pound phase! If she continues to grow at this pace, she'll be 4 pounds by next week!

She is still alarming, so we are really praying that she can tolerate her cannula and graduate from the CPAP. When Maria graduates from the CPAP, the staff will insert her feeding tube into her nose, making bottle feeding easier. I think that considering that her feeding tube is currently in her mouth, Maria did a wonderful job with the bottle. Imagine trying to drink from a bottle with a straw in your mouth - it's tough to get a good seal.

Looking Around

We're In the Clear!!

I spoke to the Adoption Agency this afternoon and we are in clear! The birth mother's 30 days have expired!! Her Consent Form, which transferred parental rights to Joe and is now irrevocable. Thanks be to God!

A Little Progress

Maria did quite well on her nasal cannula today. Dr. Balsan lowered her air flow pressure from 2 liters to 1 liter. He said that if she can tolerate this reduction, then she can try to take a bottle!

I am amazed at how quickly she is growing and maturing, now. It seems like she has broken a new plane where all the systems work just a little bit better and are a little bit stronger. But she's still a wee one.

Tonight Maria was very restless laying on Joe. She actually cried some and we were both anxious because we couldn't figure out what her issue was (sound familiar, parents???). Anyway, she needed a change in position, so Joe cradled her semi-upright in his arms. Tonight was the first time she's been held in that position for a long time. She settled in and (finally) fell asleep.

She's so cute, we hate leaving her at the end of the day!

Anemia Again

Maria's red blood cell count is down to 28. You may remember that her level at the transfusion was 25. Dr. Balsan has started giving her nutritional supplements with iron. He wants to see how supplementation helps before he tranfuses her again.

We looked at a growth chart today with Maria's progress. For her gestational age, Maria is in the 10th percentile for head size, length and weight. She's teeny tiny.

Tomorrow is the big day 30 for the birth mother to change her mind. 30 days ago, the birth mother signed a Consent Form, which transfers Maria's parental responsibilities to us. The Consent Form is revocable for 30 days, thus giving her a window in which to change her mind. After tomorrow, the Consent Form becomes irrevocable. The birth mother does not sign any additional paper work tomorrow, her Consent Form simply becomes irrevocable. I hope that makes sense! We are certainly looking forward to Thursday!!!

That's More Like It

Now this is more like it! Maria wearing normal clothes that make her look like a little girl! She got to wear her own hat last night, which fits better because its a preemie size. She could only wear the coat portion of one of her preemie outfits (from Melissa), but it looked actually more like a shirt-dress! Now if I could find a preemie belt to cinch at the waist and some nice tights...no, that would be too reminiscent of the 80's.

Last night there were two emergencies that came into the NICU. The place was absolutely bustling! We decided to stay with Maria longer than usually last night because of it. If Maria became upset, or cried, we were afraid that no one would hear her, or if they did, that they would not be available to attend to her.

She had a great night cuddling with Joe. She didn't alarm and slept peacefully and deeply - all on her cannula!

Maria turns 33 weeks old today! The nurse manager told me yesterday that most of their babies go home between 35-37 week and that it's not unusual for babies to be under 5 lbs, still. That's too soon! I'm too nervous!! But I also think that if Maria goes home in that window, it'll be toward the end. She has far too many milestones to cross, first. Besides, one day at a time, right??

Dr. Balsan is back and is steadily increasing her feedings (no surprise, there!). She should be up to 30 cc's by this afternoon - that's a full ounce! Let's pray that she can tolerate it.

No More Nakey Baby

Today Maria gets to wear her first t-shirt!! The nurses are going to see how Maria does trying to maintain her own body temperature. I'm so sad that I forgot her preemie out-fit this morning, because now her first "out-fit" ever is a hospital shirt!! Enjoy!
Okay, I'll just come right out and say here what everyone is thinking (and since I know you all love me despite my shallowness). Yes, Maria's head is molding into a weird shape. This shape is caused by the CPAP. The nurses have assured me (because yes, I've asked) that they can help mold her head into a normal shape when Maria comes off the CPAP.
One friend predicted today that Maria will have Auburn hair and green or blue eyes (based upon this photo). The more I see Maria, the more I think her eyebrows are looking red. Combine this (very) preliminary indicator and her incredibly spunky personality, I think we're looking at a red-head, here! Every red-haired person I know is fiesty, spunky and wonderful!

Big One Month

On Sunday Maria gained 70 grams...that's almost 3 full ounces!! This morning her weight remained the same, which is just fine with us. We don't want her to gain too quickly!

This weekend Maria began sprinting again, but very slowly. She is only allowed to wear her nasal cannula for 3 hours a day. She still alarms more often on the cannula, however, her alarm numbers are still pretty average for her age. The doctors tell us that any baby who is born under 36 weeks is routinely monitored for A's and B's in the NICU. This fact helps us to keep the number of her alarms in perspective. She is only 32 weeks.

Dr. Coppola put Maria back on her caffeine. Maria was taking quite shallow breaths, and Dr. Coppola wants her to breathe more deeply. We'll see how the caffeine affects her weight gain. We experienced for the first time this weekend how differently Maria's physicians practice. It's kind of a frustrating feeling. Dr. Coppola wants her to breath deeper, Dr. Balsan wants her to gain, gain, gain more weight. Balsan will be back tonight, and so we'll see what he does with her caffeine.

We realize that the contest deadline has expired. We need to look at all the answers...results soon!

Invasion of the Grandmothers

This weekend Gramma and Busha arrived to meet Maria!
On Friday they both got to hold Maria for a few minutes, and it was very precious to watch. Maria was very alert during that short time and they both got to talk and interact with her! How appropriate that they were the first family that Maria met. Friday was a VIP day for Maria!

They arrived with several prepared meals and proceeded to clean the entire house! We are so incredibly grateful for all of their help! I was feeling very behind on house stuff with our new, awesome, hectic lifestyle, so their help was so much a relief!! Of course we are also having fun drinking Corona and visiting.
Here Joe is showing them how to change a diaper through the isolette.
"Everybody say 'hey...! ho...!'. She's such a party girl already!

Test Results

Maria's brain scan results showed no bleeding. It did show one small cyst, although the NP said that it will probably go away on its own, and not affect Maria's development. The type of cysts that cause concern are the string-like strands, which indicate a lack of oxygen to the brain. Thankfully, none of these strands showed in Maria!
Her blood gas level was normal...good oxygen
Her Ph level was normal...no acidosis
So we have lots to be grateful for - Thank God, what a relief!

Contest Deadline and Passion

Thanks to everyone who submitted answers to our "name her head-size" challenge! Tonight at 11:59pm the clock stops, so if you haven't emailed Joe or posted your answer...get to it!

This morning Maria's weight is up another ounce! She actually gained 50 grams yesterday...almost 2 ounces! Her blood test came back looking very good, meaning her oxygen levels are good. We are now awaiting the Doc's decision about what to do with her CPAP (begin sprinting again with the cannula or not, etc...)

I had the chance to talk to Rachael Bede yesterday. She's my cousin who delivered her twins at 33 weeks. Among many good things she had to say, I wanted to share what she said about her little Bernadette. Apparently, the nurses commented to her in the NICU how loud Detta's cry was, and what a fighter she was as a preemie. Rachael said that she can see now that Detta is 3 yrs old (I believe), how her personality remains the same from her preemie days...Detta is a very passionate little girl.

I had to laugh at this, because the nurses say the exact same thing about Maria! They say that they can hear her cry from inside her isolate all the way on the other side of the NICU and that she's fiesty and spunky! I'm curious to see if Maria will stay that way. I would love if Maria turns out to have the same passion and spunk as Bernadette. Detta is such a wonderful little girl!

Waiting for Results

Maria had a brain ultrasound today to look for cysts and bleeding. We should get the results tomorrow. Maria will also have a urine test tomorrow to check her body Ph. The doctor is concerned that Maria has a bit of acidosis. Acidosis could explain why she is not gaining a lot of weight. So we're looking forward to getting that test result also! Maria will also have her blood tested again for oxygen levels. If her levels are very good, then she might get a break from the CPAP.

I'm hoping to get answers to all of these questions tomorrow.

Cutting Caffeine Cold-Turkey

Dr. Balsan has eliminated Maria's morning espresso shot. She's now caffeine-free. I'm happy for this because we never liked the idea of Maria taking caffeine, however, Balsan is just continuing his quest to put the ounces on Maria. The caffeine raises her metabolic rate, which makes calorie retention difficult. So far Maria has tolerated the break okay. She's having a few more alarms off the caffeine, but no one is concerned about those. Balsan has also increased the volume of her feedings 1 cc.

Maria's belly is still distended. Several factors contribute to this: the CPAP, the formula, the amount of food, gas, etc... This morning I got to watch Dr. Balsan push on Maria's belly to release some trapped air. If anyone wonders what this scene looks like, image one of your children as newborns looking like a balloon being transformed into some animal figure because their doctor is pressing both his massive hands on their belly, almost smashing their gut into their spinal chord.
Maria is such a trooper...I'm so proud of her! She is still uncomfortable today. The staff recently moved her bed from an empty, quiet corner of the NICU, to a busy, louder corner of the NICU. Sometimes I wonder if this move is contributing to her restlessness. The NP suggested to me again today that we record our voices on a digital recorder, so that Maria can hear us when she's fussy. I guess sometimes this recording can help to settle babies. I can't wait to record reading "Green Eggs and Ham" in Latin!

At What Cost?

Maria gained another ounce last night. This gain is what Dr. Balsan wants to see, but Maria has been quite uncomfortable the last day. She's been having a lot of gas and a distended belly. Naturally, her discomfort causes her to cry and be restless. It's tough to see and hear about her crying, most especially because we cannot take her out and hold her when she's upset...she has to stay in her isolette.

I hope she is more comfortable today, and that she can better digest all the formula that they are stuffing into her! My poor baby...

Maria is....

...Three pounds! I can't believe it!

Maria is tolerating her higher calorie food pretty well. She has not had any significant residuals over night, and her alarms are improving. It seems that the CPAP is providing some relief for Maria, and she's able to conserve energy and grow while using the CPAP.

Oh, Maria.

This morning Maria is still at 2lb 15oz, but she did gain 10 grams over the last 24 hours. Dr. Balsan is not happy about her slow rate of growth, thus the reason her feedings are at 24 calories. Overnight she had some fairly large residuals from the caloric density of her feeds. However, Dr. Balsan does not want to reduce the calories...he wants her to grow.

This issue with her feedings is a classic example of the "wait and see" game we play daily in the NICU. Maria is on caffeine to help reduce her A's and B's (apnea and bradycardia). The caffeine cause a higher metabolic rate which makes calorie retention difficult. But in order for her to reduce her alarms from A's and B's, she needs to grow and mature, so in the meantime she needs the caffeine to help reduce the alarms til she can grow...see where I'm going with this???

Her 10am and 1pm feedings were good. She had no residuals then, so maybe she just takes a while to acclimate to the higher calories. I hope she is indeed tolerating it, because I feel like forcing calories is a bit like stuffing a pig.

On Thursday Maria will receive another brain ultrasound to check for bleeding and cycts. Her first scan was at 1 week old, and the results found none of either. Thursday is Maria's one month birthday (30 days). With all of her recent alarming, I get nervous about oxygen saturation, particularly in her brain, so we'll see how she does. Dr. Balsan did tell us about a recent study that showed that the single greatest factor in the development of a preemie was the educational level of the mother (or primary care giver). So my monthly student loan payments feel a bit less painful!

Maria's blood cell count this morning was 36.8 (much better than her pre-transfusion 25). She's dropped a bit from her 40.5 level post- transfusion, but Dr. Balsan will supplement with iron before he would transfuse her again.

Blog Survey...sign up to win!

We got into a discussion with the nurses at Shriners Hospital today. They were asking how big Maria's head currently is. Is it the size of an orange...? ...a grapefruit...? ...a baseball...? ...a tennis ball...?

Well, here's our first chance to have fun at the expense of our dear daughter. How big do you think Maria's head is? Consider her weight...the photos we've posted...your own experience with preemies... Here are the rules:
You must guess the size as of today's date and you must give your answer in a comparable object, not in head circumference.

As a prize, we will buy the winner something "cool" the size of Maria's head. You may post your answers in the comment section, or email your answer to Joe at dewittjo@msu.edu
(something tells me that the Seale girls and the Rzepka girls will have a lot of fun with this!)

Guesses must be submitted by Friday, February 20th. You need not be present to win.

OK we've got issues already (from the DeWitts, as you would suspect, I won't say which DeWitt, but I'm sure you'll all guess, maybe another blog survey in the making). Please submit only one answer per person. Thanks! Have fun with this one!

Valentine's Day in the NICU

The nurses at Hamot's NICU are very kind to Maria. Here's a little gift they made for her.

More Photos

Joe was absent from the hospital for a couple of days again because of a cold, but now he's back and here's a couple of nice photos of the two of them. Here they are cuddling and holding hands.

Binky Progress

Learning to suck on a binky is one step towards feeding from a bottle.

Answers About Adoption

Maria's blood transfusion brought up questions about who makes medical decisions about Maria. I spent a while discussing this topic with the hospital social worker, and the adoption agency over the last few days, so hopefully this explanation will make sense. Here goes...

72 hours after giving birth, the birth mom signs a Consent Form, which transfers responsibility for the baby from herself to the agency and whomever the agency assigns as the adoptive family. 30 days after the birth mom signs the Consent Form, the consent becomes irrevocable. Some of you may hear us talking about "the 30 days", this is basically the legal window in which the birth mom has to change her mind about giving up the baby.

Now, one clause in the Consent Form states that the agency (and whomever they designate as adoptive family), takes over all the responsibilities of the baby when the baby is discharged from the initial hospitalization. I am to understand that under normal circumstances, if Maria were a term baby, she would be discharged around the same time as the Consent Form is signed, and therefore, we would jump right into making her medical decisions. But since she has not been discharged from the hospital yet, the birth mom still makes decisions about her care, despite the fact that the Consent Form has been signed.

The key to transferring the medical decisions from birth mom to adoptive agency and family, seems to be the initial discharge from the hospital. Continuing along this vein, when "the 30 days" expire, if Maria is still in the hospital, the birth mom would still make decisions until the legal finalization happens (which takes several weeks after the Consent Form expires).

Now, when Maria is discharged (within or outside of "the 30 days"), we take over her care, and any subsequent visits to the hospital or doctor will be under our care and decision making.

I hope that makes sense...there seems to be some legal loopholes, but we can't fight those, and I apologize if I've botched some legal nuances and terminology (perhaps Travis could help me articulate this more succinctly!).

Bottom Line: We will not have responsibility for her medical decisions until she is either discharged from the hospital, or the birth parents rights have been legally terminated, whichever comes first.

I will not even get into insurance issues...all we need to say is that the issue has been resolved, and there's a plan in place. I just it is executed smoothly....I'm not too worried.

By the way, Dr. Gilmour did tell me that Maria's blood transfusion would have happened regardless of consent. Maria's condition at the time of the transfusion was considered "critical" and the doctors have the right to give whatever medical care is necessary in those situations.

Care to Bond, Anyone??

Tonight Maria and I had a big, special moment while we kangaroo'd.
She peed on me...all over me...
We're officially bonded for life.

Maria's Exhausted!

As you can see, Maria is quite exhausted! We have all been asking so much of her lately..."breathe on your own"..."stop alarming"..."digest a full feeding"..."make more red blood cells"..."sleep!"..."don't pull out your feeding tube"... it's tough to keep up!

Seriously, though, Maria really has a lot going on. She spent 6 hours this afternoon on her CPAP and did wonderfully - not one alarm. Back onto her cannula at 4pm, and she immediately began alarming frequently. I really don't like seeing her having to work so hard on her cannula, and from my perspective, all I can see is that she desatts on the cannula and not on the CPAP...black and white to me...get her back on the CPAP.
We'll keep you posted!

Transfusion Results

Dr. Balsan tested Maria's blood cell count again this morning. He was looking for a result higher than 40, otherwise Maria would be transfused again today. Her number came back 40.5!! So now she is done with transfusions for this week, and I was happy to be with her when her IV was removed. Thank God! They will test her levels again next week to see if she'll need another transfusion then.

Maria's alarms are not improving. Dr. Balsan has several factors to weigh with this issue. He will put her back on the CPAP for 6 hours at a time (remember "sprinting"?). She alarms much less on her CPAP. Fewer alarms means that she doesn't need to work as hard to pull herself out the apnea/bradycardia/de-sat. Any rest she can have saves calories, which allows her to grow stronger and mature. Growth and maturity seem to be the recipe for reducing and eliminating alarms.

However, the CPAP does force air into her nose harder than the cannula, and that forced air may inflate her belly, putting pressure on her lungs, which could cause more A's and B's (apnea and bradycardia). So ... they are just weighing pros and cons and trying new things and waiting to see how she does. This time really is a "wait and see" game. I don't remember specifically asking God for the opportunity to grow in patience, but I'll try to be good (don't really have a choice, either!).

Her heart murmur is gone, thank God!

A New Day

Maria gained an ounce!

Last night Dr. Balsan ordered for her to skip her 1am feeding due to the second round of blood. I guess Maria was pretty fussy until she could have her 4am feeding. When I spoke to the nurse around 6:15am, Maria was sleeping well and feeling full. Her feedings have been reduced to 15 cc's while she's receiving blood. Stopping a feed is also common during a transfusion. However, I cannot blame Maria for being fussy...I think we all get that way when we have to skip a meal!

Her belly is looking good - not distended. She was alarming quite a bit last night, but after the 2nd transfusion began, and she was turned to her belly, they lessened. Maria does very well sleeping on her belly. I am aware, however, that when we bring her home, we are supposed to have her sleep on her back, so I'm curious to see how well that goes...but its a long way away.

For now, Maria is sleeping, back completely on room air, and looking pinker...and that's the goal.

A Rocky Road...

...best describes today (and I don't mean the ice cream flavor).

When I returned to the hospital for Maria's 1pm feeding, she was acting differently. She was more lethargic. I looked over the photos of her from the last two days and realized that she looks whitish/grey and "vein-y". All the doctors comment on her paleness when they look at her. I guess her anemia didn't really hit me with a reality check until this afternoon when I saw her behavior change.

Suddenly, I couldn't wait another second for the blood to arrive to the NICU. The ETA was 1:30pm. The time came and went...2pm...came and went....2:30.... finally around 2:45pm, the blood arrived.

I hung around for about 10 minutes after she began her transfusion. If she was going to react adversely to the blood, it would present within 10 minutes. She took to the blood fine...hallelujah! She received 12cc's over the course of three hours. At 3pm I took a coffee break and called Mom. When I returned to the NICU around 4pm, Maria already looked more pink. Eventually she perked up and was acting more normal...very feisty.

When we arrived again around 7pm, the nurse was a bit flustered and said that Maria was only "okay". Apparently she was extremely feisty (obviously feeling better), but was very restless.

The most difficult part of today (and I was there for about 7 hours), was seeing Maria poked and moved and poked around some more. She really didn't get good rest at all. While I was there, I never saw her very peaceful. For a girl who usually sleeps approx 20 hours a day, my heart just broke for her.

Her most restful period today was cuddling with dad. She slept deeply and peacefully on Joe for an hour this evening. When we left, she was settled and sleeping again.

She'll take another 12 cc's of blood from 11pm-1am tonight. In the morning the Doctor will take another blood cell count, and see if another transfusion is necessary.

So, I guess these are the setbacks that we were warned about. And I guess the mentally draining day is apart of the roller coaster ride they we were warned about.

The good news today is that Maria got to cuddle with Joe...and somewhere in all of this, I finished the laundry and ironing...I even got to bake a casserole. Oh, and the city is finally thawing out. In our weakness, He is strong.

T Time

Maria's red blood cell count was lower than the doctor expected this morning: 25. 30 is considered the low end of "normal preemie". The NP called me this morning to say that Maria could not wait for a directed donor for blood...that the transfusion needed to happen right away. I asked if Maria was in danger, and she replied that the number is "not good...but we can take care of it".

Angie and I arrived to the hospital in time to watch Maria's IV inserted. It took three agonizing attempts. But Maria was a big trooper! She was given some sugar water to "help with the pain", and between that, her binky and my non-stop talking to her, she did great. She only cried a little during the third attempt. While I never want to see her go through that again, I'm so glad that I could be there, and that Angie could be there with me, too.

The birthmom came to the hospital to have her blood typed so that the doctor knows what Maria's been exposed to in utero. She also needs to sign the consent for the transfusion. I was tempted to sneak into the lab and find out what she looks like, but Joe's voice in my head got the better of me, and I decided to respect the privacy intended for the adoption... If she wants to meet me, the agency will call... I feel like I deserve a treat (like a new car) for being such a big girl!

I hopeful that the transfusion will help her oxygen desatts...I'm actually anxious for it to happen...Maria will be so much better off. However, please pray a lot today against an infection.

Video Quality

The video quality is poor, but at least I got them uploaded! Our fiesty little girl...all the nurses keep commenting on how active she is...this activity is a very good sign of health!

Big Girl

Taken Feb 4

Those Aren't Bubbles!

This clip was taken on Feb 3

First Kangaroo Hold

This video shows the first time that we got to hold Maria. She is only nine days old, here (Jan 29).

My Sleeping Beauty

Graduation Day?

Sunday may potentially have been a big day. Maria was ordered completely off her CPAP! We're hoping that she can breathe consistently well on her cannula. She was also ordered off the Nystatin!! Hopefully that rash will completely disappear so that she can get that diaper back on.

Maria is still gaining and losing grams at a time, and has been hovering around 2lbs 10oz for about 4 days. The fluctuating weight could simply be a result of heavy diapers (hold the comments, PK!). Rapid weight gain is not healthy, as it can be a sign of fluid retention. However, we are both concerned about her weight. Dr. Gilmour (one of the neonatalogists) said that it is typical for preemies to "plateau" at a certain point in their weight gain.

Today will also be the big day when Dr. Gilmour looks at Maria's red blood cell count. Depending upon how low her numbers are, Maria could be transfused today. I was initially quite resistant to this idea, but now that I've seen Maria take a few setbacks, I see how a transfusion may help her in many ways beyond the anemia, which itself needs to be treated. The good news with transfusing preemies is that they only take in approx 10cc's of blood at a time. That's not alot (about half a feeding), and if she were to need more, she could use the same donor several times.

I'm still working on getting the videos posted...

Mommy's Version (Read Weekend Update First)

Firstly, thanks to everyone who volunteered their blood for Maria...Bryan, Steph...even Russ Kogut! I cannot wait until Maria can understand how many people love and support her!

Her alarms numbered a career-high of 22 between the hours of 5-9pm. That's a LOT. She was mostly desatting (oxygen drop), but once they changed her position to laying on her belly, she vastly improved. There are several possible explanations for these increasing alarms, but my biggest prayer is that she is not showing signs of NEC. They will watch her closely tonight. I won't get into what NEC is, unless she is faced withed it.

To say that she enjoyed exciting her parents nerves is a bit of an understatement.

Tonight we began our evening care routine by feeding her and singing "On Top of Spaghetti". Then, Joe held her while I began reading her first story aloud to her: The Hobbit. Studies show that early exposure to JR Tolkein makes very intelligent children who are almost as wonderful as their fathers...of course the studies are in my dreams, but we thought the book was a good choice!

Weekend Update

So it's the weekend. This is when we usually hunker in at home on this cold winter weekends and suck down some hot coffee. But for us it means extra time to spend with Maria. We've been in and out of the hospital a lot today. I had the chance to talk with Maria's physician today. We spoke of a couple things particularly the potential for a blood transfusion. What her doctor said was that preemies' do not have the ability to respond to low blood counts like full term babies do. Think of your thermostat at home. If you live in Florida there's no need to turn on the heat, you just set the AC. If the temps drop low the house just gets cold. Maria's thermostat is kinda like that. In the womb there's not the need to watch out for anemia. So Maria's body has not developed the ability to sense that your blood is getting low. So it's very normal for preemies to become anemic. This is anemia of prematurity. It is very likely that Maria will require a blood transfusion. Sara and I are comfortable with this.

Maria's feedings continue to be tailored to her personal needs. She was consistently having about a half teaspoon of food left in her belly when it came time for her next feeding. So the doctor decided to reduce the volume of her feedings accordingly. At the same time she increased the caloric density of her food. In this way she gets the same number of calories in a smaller volume. After this change she is not having any residuals. As she grows the volume will increase again.

I asked a lot of questions about Maria's growth. The doctor said that it is very normal for preemies to lose weight after birth and then plateau at a lower weight. Around two to three weeks after birth the weight starts to increase, usually about half an ounce per day. So Maria's weight is behaving as expected. This was comforting.

Maria had a lot of alarms this evening. She seemed to be enjoying creating anxiety in her parents. I hope this isn't an indication of what her teenage years will be like. Alarms occur when Maria's heart rate and breathing slow down below normal. Alarms are a normal part of a preemies' life.

Well that concludes are fairly technical update. Hope you found it interesting. Keep the prayers coming. We feel them.

Mittens on Maria?

Maria yanked out her feeding tube again during her 1pm feeding. She's also pulling out her nasal cannula! She got threatened with having to wear mittens tonight because of it.

Good news today! Thanks for the prayers about improved breathing on the cannula...she has indeed improved, and now wears the cannula for 9 hours, then CPAP for 3 hours, etc... This is an improvement from the 6 hours on each. One more step towards graduation from the CPAP! Let's pray that she can keep up the good breathing with few alarms.

We've begun our first tradition with Maria. Tonight both Mommy and Daddy sang "On Top of Spaghetti" to her while we fed her dinner. I wonder if we can continue this until she's 18....?

Little Stories...Nothing Technical

Two nights ago, Maria pulled out her feeding tube completely. In the process, she gagged herself and spit up almost her entire feeding. I am so glad that I was not there for that clean up!

Yesterday I sang to Maria while I was pushing her feeding. Her eye lids were heavy from fatigue, but she kept fighting to keep them open to look at me. I have only hummed to her in the past, because I don't want to bother anyone else in the NICU, but yesterday I elevated to soft singing. I love to sing to her! Since she hasn't heard Aunt Linda sing, yet, I'll bask in the light of being the best singer she's ever heard so far...

Joe kangaroo'd last night, and he started to sing softly to her as well. How do I say this part? I'm already laughing just thinking about it! I turned around quickly when I heard him start to sing because I thought, "is he really singing 'On Top of Spaghetti'?" : ) He shrugged and said, "I don't know that many songs!" I love it! I think he should sing that to her every night from now on...He is already such a fun dad...

Maria is wearing little booties now. She elevated to wearing socks around the time that they started to leave off her diaper (to help clear the rash). The nurse also gave her white socks to start... Needless to say, she's no longer wearing the socks because they are no longer white. I'll wait until that diaper gets back on before I bring her pretty new socks that Melissa bought her!

Transfusion

Today we learned that Maria will in fact need a blood transfusion. They are common in preemies due to anemia. Maria needs to have blood taken regularly for testing, and her body cannot keep making the red blood cells quickly enough to keep up with her growth. Her GI system is too immature to handle straight iron supplements, as well.

Neither Joe or I are matches for her little A negative blood, I was hoping we could directly donate to her. Please pray for a smooth transfusion, and for extra protection against an infection. I know the stats...low risk for infection, etc etc...but I'm still nervous.

Her heart murmur is due to a small ductus (PDA). Although we are awaiting the official diagnosis and treatment plan from the pediatric cardiologist, Dr. Balsan is confident that it is no big deal; it may even correct itself. A more serious and dangerous ductus would have presented itself earlier.

I have a couple of videos to post, but I'm learning how to convert them to a smaller file size before the website will accomodate it. Stay tuned, for they are very very cute!

Wee Set Back

We learned today that Maria has a small heart murmur. Tomorrow morning she'll have an echo cardiogram to determine the cause. The cause is probably either ductus arteriosus or an iron deficiency. If the cause is the former, it can be treated with endomethacin. If the cause is the latter, Dr. Balsan is talking about a blood transfusion.

I can give more details about the possible causes of this murmur, but I will wait until we have more information tomorrow. Please pray for a simple resolution. Joe is not worried; I guess this isn't something to get in a tizzy over, but you all know me...

I'll update as soon as we get more information.

The good news today is that Maria has not alarmed while kangarooing with us during the last two days. Dr. Balsan thinks that she is getting to know the difference between hearing/feeling familiar and soothing tones and touches from her parents, and the poking around from the nurses and doctors. She is so peaceful during our cuddle times...we are enjoying them more and more (I didn't think that was possible)!

Photo Time!

I just realized that we have been jabbering a lot recently, and have not been posting many photos. Tuesday was a great photo day! I was there in the morning, and she was very alert! Most of her alert times have been around 4am, which of course makes us very sad, but yesterday she really interacted with me, and I almost cried, I was so happy!

She had another good day. Yesterday's milestone was a big one - she had her PICC line removed (photos taken prior to, which is why you still see the PICC line and her arm board)! She is eating 20cc per feeding. 21 cc's is considered a full feeding, so this afternoon, she should be taking in all her nutrients through her tube. I'm so proud of her! She is still tolerating her food well, with the exception of 2 urp ups (which are gross).

She is not gaining weight as quickly as Dr. Balsan wants. On Saturday he had switched her from her ISC moniter (which is a little wire on her skin that allows the bed to regulate her body temp) to NC, which gives her the chance to regulate her own body temp. She was using too much energy to regulate her body temp, so they've got her back on the ISC to give her a chance to retain some calories and gain more weight.

Aunt Stephanie came to visit today, and in this photo, Maria is holding her hand. Maria is getting very good at grasping with her hand, and is improving her sucking abilities. I never thought I'd be the type to shove a binky in a baby's mouth, but she needs to learn to suck. We often try to get her to suck a binky when she eats, so that she associates sucking with feeling her belly fill.

Melissa came to visit again in the evening. She was so nice to bring a couple of preemie outfits. Funny, the outfits look so little, despite the fact that they are for 1-5 lbs preemies. When I looked at them, I thought, "is there such a small baby?" But then I looked at Maria and thought, "she'll never fit into these!"

We love to bring visitors into the hospital (let us know when you want to come!). Hopefully Maria will continue to grow and to stabalize her breathing. When she can achieve these two things, we'll be able to hold her more often.

I leave you with a photo that makes her look like she is no one else's kid, but Joe's...sometimes, she just needs to kick her feet up!

Daddy's Back

After being out of commission secondary to an unspecified illness I've have returned to my fatherly duties. I felt 100% today so I went back to the hospital with Sara this evening. We visited with Maria for about 2 1/2 hours. It was great. Maria kangaroo'd with Sara for almost an hour and a half. She did great! No alarms at all while kangarooing! Maria still has more frequent alarms on the nasal cannula but they haven't gotten more frequent so they are continuing with the sprinting. She is tolerating feeds well too. Though she had a little left in her belly from one feed and urped up some after another the doctor feels comfortable progressing her. She's up to 17 cc every three hours and set to hit 18 cc at 1 am. We pray this continues because this will allow the PICC line to come out. We're hoping in the next day or so it will be out. I love seeing Maria without the CPAP. She looks very cute. We love her more each day. Tomorrow is my turn to hold and I can't wait!

Sprinting and Feeding Update

Maria is doing fairly well sprinting. She has fewer alarms on the CPAP than on the cannula. We want to ween her off the CPAP, so we'd like to see fewer alarms on the cannula. In the meantime, she'll continue to sprint and see if she improves on the cannula.

Dr. Balsan is still hopeful that he'll be able to remove her PICC line early this week...keep praying! She is tolerating her feedings amazingly well. One nurse commented tonight that she was very surprised at the weight of Maria's evening diaper...I wouldn't be surprised if she loses some ounces because of it!

Thank you for all of your love and prayers from a distance...we all have such wonderful support, and we're very grateful for it!

Nystatin

This afternoon we administered Nystatin to treat the thrush. Dr. Balsan said that it's common to administer this for all babies under 1 kilo anyway (that's Maria). I guess the feeding tube is a foreign object and he doesn't want any fungus to grow because of it.

The Nystatin is very sweet tasting, and the nurse warned me that most babies don't like it. We swabbed it around her mouth and Maria loves it. She kept sucking on the swab and didn't fuss a bit. So she has a sweet tooth...welcome to the female world! Too bad she has no idea that we don't keep any artificial sweets in our house as a rule...cruel joke!

I got to do a lot of her care today. I did the Nystatin thing, diaper, temperature, but today was special because I got to put lotion on her for the first time. Her skin is starting to get dry, so I gave her a little lotion message...I also messaged her ears, which sounds weird, but the CPAP smashes her ears against her head, so I'm trying to keep the blood flowing...

Joe is still playing it safe by avoiding the hospital. He's feeling a bit better, but not 100%. He wants to visit again tomorrow after work.

Morning Report

Maria lost an ounce last night. I guess some weight fluctuations are normal. Overall, they are looking for growth trends, and so I can't look exclusively at one day as a pattern for growth.

I just learned that Maria has been on caffeine via IV. I didn't know this. I don't like this. But I am not a neonatalogist, and the caffeine has played a role in helping her nervous system "remember" to breathe. The caffeine helps prevent apnea and bradycardia.

She slept very comfortably...the nurse said that she can tell Maria really enjoyed cuddling last night. I don't know if she said that to appease me, or not, but I like hearing that Maria slept well.

The last day or two, Maria's been a bit of a fussy- butt (that fiesty thing). So a good night's rest is a very welcome report!