I don't know how many people are still checking this blog, but I thought I'd post some updates.
Thursday night we nested with Maria in a room at Hamot. That night we discovered that Maria's grunting and sleep talking can definitely keep us awake, but we didn't care...we were so happy to be with her all night for the first time!
Maria jumped into life in the DeWitt family with no ceremony. No big party, no visitors, no unnecessary fussing...there was no time for that: Villanova was playing Duke. As you can see, Maria got bored with the game fairly quickly. Don't fret, DeWitt women, I'm sure that Maria will be screaming at the TV with you soon enough.
Maria received many visitors before we left on Friday. Two of the security guards came in, Ms. Francis (Maria's favorite housekeeping staff) came looking for her, and two of her favorite nurses came in to visit on their day off, just to say good-bye. Lisa (on right) was Maria's nurse the day we first met her and Lori (left) was always so excited to be assigned to Maria. Lori is easily embarrassed. When I asked Lori once about cradle cap, she began her answer by describing what "cradle crap" is. She's never lived it down. All the nurses were wonderful with Maria, and we are so grateful for their help. We even enjoyed getting to know them personally!
Speaking of nurses...Joe came home yesterday with literally, arms full of gift bags! The nurses and staff at Shriners threw him a surprise shower at work!! I guess they lured him into the lunch room by saying that everyone was singing happy birthday to one of the girls (and he didn't really understand why it was imperative that he be there for it), but when he walked in, he saw a cake with "Baby" on it, and everyone started to sing "Happy Baby" to him! He was very moved and touched. When he came home and told me the story, I almost cried: partially because all the outfits were so so cute, and more importantly because of their thoughtfulness and generosity. This shower was just another way that we see God's provision for us in the love and support we've received going through this. How humbling. How wonderful.
Now that we're home, we're trying to settle into a routine. Maria got her first bath at home. 
She also needs to have her tummy time to stregthen her core muscles.
Every baby does, I know. But before we left the hospital, Dr. Gilmour showed us some muscle tightness that Maria has due to prematurity. This tightness is normal for preemies, and should go away unless it's Cerebral Palsey (CP), which we won't know for sure until she's around 2 years old. She has some type of hyper extension in her feet, legs back and neck. Dr. Gilmour showed us some exercises to do, and recommended a...wait...my dear big brother Dave, skip the rest of this sentence...the Dr. recommeded a baby massage for Maria! Maria really enjoys the messages. Dr. Gilmour also said "no johnny jumpers and exer-saucers". This instruction was like music to Joe's ears because he and I had debated whether these devices were good for babies or not. Joe said "no" because they discourage core strengthening. I can be wrong once a year, so I didn't mind taking the brief hit.
Maria also has some reflux issues. This reflux is also very typical in preemies. We're doing everything we can to help ease the reflux without medication, and I was relieved to hear Dr. Webster echo our desire to use medication as a last resort. But she does spit up so much, we're holding our breath to see if she can still gain weight despite the reflux.
Speaking of Dr. Webster...we were successful in getting into his practice!! Joe thanked him and acknowledged that we did weasel our way into his office, and Dr. Webster said that he is very happy to take her because he likes the NICU graduates with special needs. He also said that he had heard of Joe from someone at Shriners, so we weren't completely unfamiliar. He showed us how Maria does this gulping thing, holds her breath, and throws her head back, which shows that she's trying to keep some food down. Joe really likes Dr. Webster also. We are relieved to hear that he is very pleased with how Maria is transitioning into home.
We already had one home nurse visit, and she'll visit again at the end of this week. Early Intervention will also be visiting to follow Maria's physical development. Hamot is starting a Development Clinic and Maria will be one of their first clients...If that doesn't work out for some reason, Dr. Gilmour has us set up to bring Maria to Allegheny General in Pittsburgh for their development clinic. I'm so relieved that we can intervene early in her development to give her the best chances for normal growth.
Go State!
Okay everyone, go pull out your U2 playlists and crank up the volume on Beautiful Day.
All three of us are home!
I'll post an update about our nesting experience last night and give a discharge summary, but right now I have to clean the bathroom while Maria is sleeping and Joe is out getting dinner (Yummy sushi...I have such a great husband).
Maria has been officially ordered OFF her monitor!!!! She made it - 7 days with no bradys!!!!
We are so incredibly grateful! Thanks for all the prayers... We're staying at the hospital tonight, and discharge is scheduled for 1pm on Friday.
Oh, my gosh...we're coming HOME!!
...
something interesting today. As I was leaving this afternoon, awaiting the slowest elevator in Erie (found in Hamot's North Wing), Nancy the security guard caught my eye and said, "I've been thinking about you guys all weekend." I thought this was strange, because Nancy has a busy little family of her own (her 15 year old recently assembled an entire car engine by herself, but that's a whole different story). Why would Nancy even think twice about us after she's left work?
She said that she has been feeling very strongly that Joe and I were hand chosen by the Lord to be Maria's parents. Nancy said that she really believes that God meant us to be a family with Maria, and went on with some other sweet and encouraging words. She has no idea about what we went through with the first baby, or about our journey that brought us to adopt...therefore her words were all the more powerful to me. Her voice was shaking a bit like she was nervous, and I can see why. I didn't know that she was a Christian, and she doesn't know that we are. She was going out on a limb to share her faith with us, and I appreciated that. I appreciate how she cares enough about us and Maria even to think about us.
I share this, because, once again this evening, I am overwhelmed by the outpouring of love and prayers we've received from all of you. Our daily encounter with Nancy represents the daily love and support that we receive from you all at a distance.
Okay, enough sap...
Maria did not have any bradys today - thank God!
Here's the plan for Maria's discharge (if there can be such a thing as "a plan" when one is admitted to the NICU):
Maria is scheduled to come on Friday, with or without a moniter. If she has a brady between now and Thursday, we'll do a quick monitor training session and bring her home with it. If no bradys between now and Thursday, she'll come home wireless.
We've been programmed to take things "one day at time" for the last 54 days. Now that we need to begin planning for things, I feel a bit jolted. We have a big week ahead. I think we should call this week, "Summer Camp Week" and adopt the appropriate principal of operation for success: Flexibility, Flexibility, Flexibility.
Joe and I can be like the old Summer Camp directors: He can wear the director's hat, and call me the "cutest girl in the NICU" and I can carry around the pink flamingo and inspect everyone's isolettes in the morning. Then Joe can entertain the crowd, leading them in rousing renditions of "Waltzing with Nurses", instead of "Waltzing with Bears" and I can sit in the background doing all the real work that makes the NICU operate smoothly. We can look for a swimming partner for Maria, but she'll already have lots of kids asking her because she's a big 5 pounder who can bathe in the white area. She'll hog all the chocolate milk at dinner because she's such a snorty pig. At the end of a long day, Joe and I will retire to the boat, where we'll have some beers and cigars with the 3 Amigos. On our way back to the campers, we'll bust some teenagers for making out at the lamp post. And when we're finally done with this week, you can be sure that we'll be singing the Beach Boys' "Sloop John B" all the way home.
Seriously, though...we are excited to have Maria home. We've been trying to get her into the hottest pediatric practice in town, but Dr. Webster (who is like a local celebrity amongst parents here in Erie) is not accepting new patients. So I pulled out my "ask 1 annoying question per day" card and asked Dr. Balsan to call Dr. Webster and tell him how wonderful we are, and would he accept Maria into his practice. Dr. Balsan smiled and said he'd be happy to make the call. I hope it works out. This favor was a bit unfair of me, I must admit. Joe told me once that you can pretty much get a doctor to do whatever you want if you can just get him on the phone...
We're asking for a big miracle, here, and hope that you can join us...
Maria has still not had a bradycardia since Friday. She needs to go seven days without a brady in order to bring her home without a monitor. We want to keep our expectations realistic, which is that most preemies go home with a monitor. However, we are really really hoping that Maria can continue the streak she is on and come home "wire-less" this Friday. With or without the monitor, we are planning to bring her home this week.
Please join us in hoping and praying for this little (but very significant to us) miracle to materialize!
Maria's echo cardiogram came back showing a tiny PDA (ductus). The cardiologist emphasized the word tiny. He wants to see her in 6 months to confirm that the PDA has indeed corrected itself.
Her brain scan results came back "unremarkable"! This result means that her brain is normal (well, so far)! The small cyst she had at the last scan is gone!! I am so incredibly grateful for this one!!
Dr. Balsan said that Maria is on the "launching pad" to come home. He also said that we will need to bring in a crowbar to remove her from the NICU. I love hearing about how attached everyone has become to Maria. She receives regular visits from the housekeeping staff, labor and delivery nurses, and the security guards. One NP said that she arm-wrestled Maria's nurse to gain mid-night feeding rights. I am becoming overwhelmed by how loved she is in the NICU. She's really had very good care.
I got to have a little Sassy McMuffin.
Maria is truly growing up - she sure knows how to communicate her need for food! She was such a sassy pants, I couldn't believe it. She wouldn't let me take her temperature (which needs to happen before she eats). She kept squirming and being sassy, which made it difficult to get an accurate read, which meant that I had to try again, which made her get even sassier, which meant another inaccurate read, etc....it went on and on. I thought it was funny, she didn't. She wasn't crying or even fussing...she really does just get sassy.
Maria received two immunizations this morning, also. She cried out with each shot, but never longer than 3 seconds. She is really a tough muffin. I guess she's gotton used to NICU torture. Before her shots, all the nurses had a story about their kids' shots, and how one kid even burst a blood vessel in his eye because he cried so much. One nurse's husband cried during the shots...Maria just took it like a woman. I was so proud (and relieved!).
When she finally did get a bottle, she released her inner pig, and Snorty McPhee thoroughly enjoyed her liquid pancakes.
Maria had no alarms last night. If she can go seven days without a brady, she can come home without a moniter. Could this be the beginning of her "snapping out" of the bradys???? Could this be the beginning of the miracle for which I've been praying????
Last night Dr. Balsan said that he's thinking that Maria will come home in the middle of next week! I think that's overly ambitious and unrealistic. The nurse agrees with me. I would, however, love to be wrong. Lord knows we want to get her home, but I just don't feel like she's ready. I guess I'm still awaiting my miracle, in which Maria just "snaps out" of her bradys and de-sats and comes home without a monitor.
So far she is tolerating her 9 X 13 pan pretty well and is taking her bottles well with supplemental oxygen during feedings (she's such snorty pig). These two criteria are what determine her discharge, so maybe Dr. Balsan isn't as crazy as I think.
Dr. Sala came this morning to check her ROP. It has not progressed at all (thank God), so he will wait 2 full weeks until he checks her eyes again. I should add here, that Maria did not require a binky or any too-sweet to get through her eye exam. She didn't flinch or cry...she took the torture like a tough little woman, and I just loved hearing all the praise from the NICU staff over what a good girl she is!!
Maria loved her bath last night. She was so relaxed, no Sassy Pants or Sassy McMuffin...just wonderful Maria. I am so proud of her in so many ways!!
...
we'll try not to drop you in the tub!Now that Maria is out of her isolette, and into her "big girl bed" (which looks more like a 9 x 13 pan), we are going to be bathing her! How exciting! I mean, how scary! Tonight's the night of our big bathing debut. We are both much more comfortable handling her, so I'm sure it won't be too bad. If someone would've told me that we'd bathe her eventually, I would've called them a liar - she was so tiny, I was afraid to touch her, and changing her diaper alone threw me into nervous sweats. How far we've come...how far she has come...Today she'll have her echo cardiogram to check the status of her heart murmur. Tomorrow she'll have her brain scan. Saturday and Sunday she'll receive her vaccinations. She has a busy few days ahead of her, so please pray that all goes well. I'm a bit concerned about her brain scan because she's been de-satting so much. I hope that she does not show any additional cycts. I'm also concerned about her ROP since she's been on supplemental oxygen for the last week or so. Dr. Sala was supposed to check the ROP progress on Monday, and as of this morning, no one's seen him still. Even Dr. Balsan said that it's wierd that he's gone MIA. Sala's office has said every day that "he'll be there today", and nothing is happening. I guess the charitable thing to say is that I hope he's okay, but really, I'm less than impressed. Hey Paul...want to take on a pediatric fellowship and re-locate to Erie??? There's obviously plenty of work to be done here!!!
...
and she drank a lot of juice."
Our Chubby Cheeks with no tubes or tape!!
The NP decided to mix things up a bit with Maria yesterday. When I arrived for the 4 o'clock feed, I got the news..."no more telling Maria what to do". She decided to remove Maria from the schedule that she'd been given, which was to eat every 3 hours a certain amount of formula. Forcing her onto a schedule, meant that Maria had been eating while she slept, and because she was always so tired, her alarms were increasing.
NP decided to try to let Maria call the shots: she's allowed to sleep as long as she wants, and we feed her only when she awakes on her own. When she does feed, she eats as much as she wants; she'll even get a free re-fill on her bottle, if she desires. I was so relieved to hear this, as Maria could actually finish a nap!
When Maria is alert, it is usually for about 90 mins at a time, now. On her old schedule, she would only have about 90 mins to sleep before she'd be woken up again! This new schedule is (so far) much better.
She has actually fallen into a pattern of eating every four hours instead of every 3. When she eats, she has been eating 2 full ounces (which is about 15 cc's more than her former feeds). She kept this schedule for the last 12 hours, and alarmed much less during feeds (she does still get supplemental oxygen during feedings, though). We are so much happier knowing that Maria is more comfortable: while both eating and sleeping.
Maria had a pretty good night - a better one than we expected. She took her feedings better than she did in the afternoon. Breakfast went well, although she was awake and fussy for about 90 minutes after she ate. By the time she settled down to sleep, she didn't have a lot of time to rest before her next feeding.
Her next feeding (2nd breakfast) was tough. She was so sleepy when she started, and pooped out sooner than usual. She had her cannula back in, with some oxygen to help. Despite the oxygen, her heart rate and oxygen dipped to levels lower than I've ever seen. I watched my little girl, whom we call "tomato face", go from having a very red face, to having a gray face. It was very scary to watch, and effected me more intensely than I realized at first.
Bradys and De-Sats are so normal in the NICU. We're constantly told to expect them, not to let them bother us, and certainly not to worry about them.
Aunt Betty reminded me that God loves this baby more than we do. I know that...but it was nice to hear it again. Okay, deep breath, little prayer, and a shot of tequila...ready to try again!
Maria had two difficult feeds this evening and afternoon. She completely pooped out before her feeds ended, and more disturbingly, she alarmed very frequently while eating.
The nurse removed her NG tube (feeding tube) at 4pm today. She looked so cute with a tube and tape-free face! I took some photos, but decided not to post them yet, as we are both convinced that she'll be back on her feeding tube and probably her cannula by morning.
We don't know why she is slowing down with bottle feeding; she was doing so well! We are concerned about her, of course. We don't want her to be losing oxygen and dropping her heart rate so often. We certainly don't want her to be in pain or discomfort. Will she ever become independent???
(that was a hypothetical question, we're not looking for anyone to answer it)
We also struggle with this setback personally. Each hurdle she crosses is a step closer to home in our mind, and therefore, we find it very easy to allow our expectations to rise too high. We thought that once she mastered her bottles, she'd have it mastered permanently. That's obviously not the case.
Thanks all for your love and support. We are trying to remember what Dr. Deacon Pregler said about Maria's setbacks...this time of growing in patience will teach us innumerable lessons about parenthood (and for Joe, lessons about being a good physician, too). Fight the good fight, right??
Maria is going to try to take all her feedings by bottle.
I hope that she can handle it. She's so cute to watch drinking a bottle because she turns from being a gorgeous little girl, to a hungry crazy pig whenever she's hungry! Perhaps we'll video record our impressions of her and post them. This kid is so much fun to immitate (as I'm sure all babies are)!
She was introduced to her first rock band yesterday: U2, of course! Joshua Tree - what else?
Maria got to try breathing without her cannula today! The nurses removed her cannula, along with all the horrible tape ripping up Maria's sweet cheeks, and gave her the chance to breath without any supplemental oxygen or streamed air. She tolerated it pretty well. I don't think that her alarms were excessively higher without her canula, but we'll wait for the official report. She does still need the cannula placed in her nose while she eats, though. I'm trying not to expect too much. She relied on streamed air so heavily for so long, I doubt that she'll be able to tolerate the withdrawl perfectly at the first try.
She is such a piggy eater - she's nippling every other feeding, now. Today she proved that she is so good at nippling that she can drink while she's sleeping. We had previously been waiting for her awake times to nipple, but now she can drink no matter what!
Maria found her thumb yesterday for the first time! We are so proud of her!
Even though she is back in her isolette, we still bundle her up. The isolette is only a couple degrees warmer than room air. This small temperature change goes a long way in helping her to conserve calories while she continues to work on keeping herself warm.
Dr. Balsan decreased her food's caloric density. She gained 140 grams over two days, and that's a bit much. One of the NPs is sure Maria is showing some edema (swelling), but Balsan disagrees. I guess the compromise was to decrease calories.
Maria's alert times are more frequent and are lasting longer. We can hold her as much as we want. She is now able to try the bottle every other feeding, and Dr. Balsan thinks that in a couple of days, we will try to nipple every feeding. I think she could nipple exclusively now. She roots at every feeding that I am there, and she gets cranky waiting for the pump to feed the formula through her NG tube over 30mins, as opposed to her sucking it all down in 12 minutes (at which she's become a true proficient)!
She has two new roommates in the NICU. We talked this morning about sharing the nurses attention, and she'll try not to hog it. Funny thing, though, when the second baby was admitted last night, the nurse said that Maria started to alarm more - she just wants everyone to continue to be at her beck and call! I told Maria that it wasn't nice, and that all sick babies need attention, not just her. We'll see how she takes her first lesson in sharing.
Yesterday we learned something new. Dr. Balsan took some time to talk to me about this last weekend and Maria's setbacks. He basically said that her setbacks confirmed what he had suspected all along: Maria is younger than we think. Here's how it works:
Because her birth mom didn't know she was pregnant, she was given a sonogram and made a best guess at her last period. The sonogram and her best guess both put Maria at 26 weeks gestation. After the C-section, Maria was given a Gestational Age Assessment. This assessment scores various movements and reflexes and the gestational age is assigned based upon the final score. After the physical assessment, Maria's score put her at 28 weeks. So the NICU kept the 28 week number as their starting point. This calculation would make her 35 weeks and 1 day today.
We may have told some of you that Maria is small for 35 weeks - she's in the 10th percentile for height, weight and head circumference. Well, if you score her as a 33-week baby, she's in the 50th percentile. Here's an example of how Maria's symptoms have confirmed her younger age.
Keeping with the 28 week delivery age, Maria was first taken off her caffeine at 32 weeks and did not tolerate it. That intolerance is a bit odd, as its reasonable for a 32 weeker to be weened off caffeine. But, if you think of Maria as being born at 26 weeks, she would've been taken off caffeine at 30 weeks, and her response would be completely expected and normal for a 30 weeker...they still need caffeine.
So what about the initial Gestational Age Assessment, then? Why did she score like a 28 weeker? Well, of course there's a margin for error, which is two weeks. We're now thinking that she was just very active and spunky for her 26 week age, and that the sonogram was probably more accurate in assigning her age. For the sake of simplicity, Dr. Balsan is keeping her initial age as the official one - she is still talked about as being 35 weeks gestation, and born at 28, but everyone's is just lowering their expectations for her. If we see her as being somewhat immature for her age, then all of her symptoms and setbacks make perfect sense.
Sorry if that was confusing. Maria is an immature 35 week baby, and therefore will probably require more time in the hospital (at least 4 more weeks, depending on how she does).
This hat Maria is wearing inspired her latest nickname in the NICU. Maria the Muffin Maker is the latest in a string of many nicknames that people have assigned to Maria. Other names she's been assigned: Little Sweetie, Sassy Pants, Little Bumble, Honey Bear, Sugar Plum, tomato face (usually used post-transfusion).
This morning we heard that Maria only had two alarms over night!! I cannot express how encouraging that was to hear. She also gained a whopping 80 grams.
The nurses put her back into her isolette yesterday because she just could not keep up her temps in room air. It's never fun to hear that your baby failed her cold stress test, but she obviously just needed a break, because just look at the difference the isolette made for her overnight! I find it strange how the tiniest change can make such a big difference.
We had all been asking a lot from her lately. She learned many things simultaneously, and she just couldn't keep up with it all at once. She was cold stressed, learned to nipple, removed from her CPAP and her caffeine all around the same time...no wonder she had a difficult time keeping up!
Last night she drank her third consecutive full bottle...and she choked in down in 11 minutes - I was watching the time because I thought she was slurping like a crazy girl, and wanted to time the pig-fest. She must be using most of her calories to eat!!
This morning I brought her some music because I felt like we had been neglecting her brain development. The NP suggested that I record some classical music onto a digital recorder to place in her crib. I've seen babies with these little recorders, and the sound quality of the music is just crap. So of course we had to buy her portable speakers for our ipod so that her first musical exposure (with the exception of Joe's rousing rendition of "On Top of Spaghetti"), is a high quality sound. Come on, Vivaldi, help those brain cells start working on her Harvard admissions application...
Dr. Sala saw Maria this morning, and found level one ROP. Level 4 is the worst. He'll see her again next week to check it, hopefully, it'll clear itself. Rarely would a level 1 ROP require intervention (so says Uncle Paul Brown, ophthalmologist extraodinaire), but she's still at risk if the retina doesn't self correct. She could develop anything from a lazy/wandering eye to severe nearsightedness...more severe cases of ROP sometimes cause blindness, but it is very, very rare. Please pray that the ROP self-corrects!
Maria took the exam like a champ. Sala placed a clamp on her eye socket to keep her eye open. She is such a trooper!
Maria also took another full bottle this morning! That's two full bottles in a row! Her nurse wants Maria to begin trying bottles once a shift, instead of twice a day, but we'll see.
Her alarms are not improving, still. The NP said that their number is almost too high to count. So we'll see what Dr. Coppola says during rounds today. We're disappointed that the transfusion did not provide the desired results.
Maria was moved to a big girl bed this weekend! But this morning her body temp was kind of low, so now the NP is talking about busting out the isolette again. I have had her in light, newborn, cotton sleepers, though. They are too big and perhaps not cozy enough. Thank goodness that Rachel brought a big box of preemie sized clothes this weekend!!! I had not wanted to buy a ton of preemie sized stuff, but for the next week or so, I really think that the smaller sizes will make a difference. And even better - since they came from cousin Rachel, everything is super cute. I've never seen so many wonderful looking hats!
Maria loved meeting Aunt Michelle. 
Funny thing: Mich
elle went to the NICU with Joe on Sunday while I was at work. The sec
urity guard, the doctor and one of the nurses all thought that she was me! We all got a good laugh out of that!
Saturday was quite busy and hectic, so I feel like we have so much to update!Maria's transfusion went well and not-so-well. Technically, all went as planned. Maria had to skip 2 full feedings during the transfusion, which she survived thanks to lots of extra holding and cuddling by us and the nurses when she got upset (who doesn't when they're hungry??). She took the IV like a champ - didn't cry at all. Now that the transfusion is over, she looks as red as a golden delicious apple! So on the surface, it was a success.The transfusion went not-so-well in the sense that it has not made a difference in the number of her alarms. Before the transfusion, she was on a 2-litre air flow and a bit of additional oxygen. Now after the transfusion, she is still on a 2-litre air flow and additional oxygen.Of course no one knows why this happens, they just say that they've seen it before. Maria did receive three times the amount of blood over what she received the first time, so her heart and lungs may just need some time to adjust to added volume. We'll just have to wait and see how she does. This situation is very frustrating for both of us. It's difficult to be patient. It's difficult to see Maria take one step forward and two steps back. After her transfusion, the doctor gave her a diaheretic to make more space for the added volume in her body. So on Saturday morning, she had actually lost an ounce. Last night, though, she gained 80 ounces, and is up to 4 lbs. 7 oz! Her belly is quite disended though, so we're watching that. Her alarms continue this morning.The nurses are noticing that most of her alarms are clustering around her feeding times. As her belly fills, it can push up against her lungs, causing her to alarm. They also suspect that she may be developing some reflux, which could also explain the alarms. The doctor will decide today if she'll put Maria on reflux medication.The little step forward among all the set-backs is that Maria is doing very well maintaining her body temperature. She should be moved into a "big girl bed" very soon.Her ROP test has been pushed back again...we're just waiting on the opthamologist - any day now.The best news about Saturday is that Maria took a full feeding by bottle on Saturday morning! Her first full bottle!! And she was sucking away still when the formula ran out, too! We're are so excited for her.In conclusion, Saturday was a roller-coaster day. Thank God that Aunt Michelle was here to drink loads of coffee and wine with! On Saturday afternoon the Erie girls threw us a beautiful shower...we are so grateful! I was gushing at the shower about how well Maria was doing. I left the shower and went to the hospital, only to find Maria had taken a step back. I am always amazed at how quickly her condition can change. One day we're starting to catch a glimmer of the finish line at the end of the NICU, and a few hours later, we feel like we're starting over again.For the moment, Maria really is doing well....but she also really has a long way to go...I'm never going to Cedar Point again.
Last night our friend Fr. Chris came to see Maria. We got to talking about her baptism, and decided to have her baptized!!
There was always some question about the adoption being finalized in court before Maria could be baptized. Given Maria's current condition and the legal status of the adoption currently, he thought that it would be appropriate to have her baptized at any time. He graciously took the time to call Fr. Koos (Hamot's chaplain), who approved it, and Fr. Chris called our pastor Fr. Mayer, who also approved the idea of baptizing Maria.
Here's how it went down: Maria was not given the full baptismal rite. He baptized her within the context of a blessing given to adoptive parents and their children. Fr. Chris literally just said the words and pushed water out of a hospital syringe onto Maria's forehead.
When Maria is discharged from the hospital, we will have a formal Supplying of the Rites at the Church, at which she'll receive the rite of exorcism, oils, godparents, etc...
We are so happy to have this done! And we are so grateful to Fr. Chris for all the time he spent with us at the hospital.
Maria needs another blood transfusion. Hopefully the blood will be ready by this afternoon. She alarmed more than 30 times during the night, despite a 2 - Liter flow of air and additional oxygen supplemented through her cannula. She's been exclusively on her cannula for almost a week, now.
Oh, little girl...
She was scheduled to have the pediatric ophthalmologist, Dr. Sala, test her this morning for Retinapathy of Prematurity (ROP). He called to have her pupils dialated 30 minutes before his arrival. Well, his arrival won't happen now until tomorrow. So Maria gets to have dilated pupils all day, and then again tomorrow. I guess when you're the only pediatric ophthalmologist in town, stuff just interrupts your schedule.
Please pray for Maria's transfusion. Pray that this transfusion will do its job, and help more than the first one did. Her heart murmur is back, but the transfusion should solve this one, too. I don't know why the transfusions make me so nervous, but they do. The IV is just one more source of potential infection. The good news, though, is that Maria's original donated blood is still good, so she can get the same blood as the first transfusion!
Dr. Balsan reminded me today that he needs to give Maria another brain scan and echo cardiogram before he discharges her. He then said that he was going to order those tests for the end of next week!!
"How long before discharge are these tests going to be?" I inquired. He smirked and said (no surprise) "Weeeelll, we'll just wait and see how she does!" This man is just killing me. He said that Maria's biggest hurdle is her alarms. She's progressing very well maintaining her body temp, and is on track to move to an open-air crib by Saturday at the latest. Her bottle feeds are improving, but she's definitely got a long way learning to drink a lot consistently. After she masters the drinking, though, Joe and I will have to decide if we want to bring her home sooner with a monitor, or wait it out in the hospital until she can go 7 days without an alarm (which is the criterion for going home without a monitor).
Monitors can be burdensome. They're loud, prone to false alarms, cumbersome and usually stay with a family for 6 months. But, Balsan keeps reminding us that the hospital is not the best place for a baby.
The miracle that I'm praying for, is that Maria will just stop alarming within the 7 days that she would normally be learning to eat. Then we could go home sooner without the monitor. But, her big issue has always been her alarms, so it would be impractical to think that she could come home monitor-free. But a girl can dream, eh....?
Maria is really improving her bottle feeds. She began by taking 7cc's. Joe was best at feeding her, and could get Maria to drink up to 12cc's. I was frustrated, because I could only ever get her to take 2-6 cc's.
But, this morning, Maria really took off...she drank 31 cc's!!! That's almost a full feeding! Right now she's taking a bottle twice a day (whenever she's most alert). When she can take 2 full feedings by bottle, she'll be able to nipple more often.
Her cold shocking is going pretty well, also. She's keeping normal temps, although we are really starting to bundle her up with layers of clothes!
Her alert times are now more frequent and last longer, so we've decided to add her 7am care time to our schedule...that makes a whopping 5 trips to the hospital per day. We love it. She really likes to interact!
We experienced this week some of the difficulties that one hears about in the NICU. Today, Maria's NICU roommate passed away. We don't know much about the little boy, but we did overhear enough (although we tried not to listen at all) to give us an overview.
A little caucasian boy was brought in from Meadville a week ago. I remember when he was admitted - there was a lot of commotion. I don't know how many weeks gestation he was. What I do know is that he had severe brain hemorrhaging. He never moved on his own, and more importantly I guess, he never demonstrated a gag reflux, which I guess indicates some potential to breathe eventually. I overheard someone say the mom's birth date, and she is only 24 years old. I saw her a couple of times, and she literally looked 40 years old. That's all I know, and it is very sad to see such a young couple endure what they did.
The boy and Maria were the only babies in the NICU recently. Their conditions are in such stark contrast, I wonder what the boy's family thought about all the happy gushing that happens at Maria's bedside so many times a day. Maria is so incredibly blessed. Thanks for your prayers.
We learned a couple of things about Maria this morning. First, her crit number (total red blood cell count) is back down to 25. The staff did not test her retic number (newly produced red blood cell count), so we don't know if Maria is producing any new red blood cells on her own. Joe and I are both a bit annoyed that they did not test her retic numbers, as this level would indicate whether or not her supplements are working. Plus, they told us last week that they would test her retic numbers today. Perhaps it was a misunderstanding. She will not be tested again until next Monday, because they want to be careful not to be drawing a lot of blood from her.
Her crit number is at the level where it was at her blood transfusion. Since Maria is older and more mature, they are hopeful that her body will eventually be able to raise the crit number on her own. We will just play another round of "wait and see"! Please pray specifically for her anemia. The biggest tizzy I had during this whole time was her first round of anemia...it really scared me, and I want to see Maria be able to pull out of this one on her own...she can't have transfusions indefinitely!
The good news today is Dr. Balsan wants to begin to cold stress Maria. This cold stress means that they will progressively lower her bed temperature by 0.5 degree every three hours, and see if she can keep up. Her body temps have been very good recently, so everyone is very hopeful that she will do well with the stress. If she can handle the cold stress, then she can move into an open-air bed!! Wouldn't that be wonderful?!?!
Many of you have been asking if the adoption is finalized now that "the 30 days" have expired. The short answer is: no.
Here's the long answer:
If Maria's birth mother wants to get her back now, she'll have to prove to the Court that she was under duress or heavily drugged when she signed the
Consent Form. In this current birth mother's situation, she'd have a little to no chance of being able to prove either of those.
The Consent Form, which transferred parental rights to us is a legally binding document - it is now irrevocable. However, the Consent Form is not a Court document. The birth parents' rights need to be terminated in Court, and after that termination, our adoptive rights need to be finalized in the form of Maria's new birth certificate and social security number.
Pennsylvania law states that if there is no known birth father in the adoption, the birth parents' termination proceedings cannot begin until the baby turns 6 months old. This waiting period gives the birth father a chance to "come out of the wood work". After the 6 month waiting period, the birth mom will have to testify in court that she does not know who the birth father is, and the Court can terminate her parental rights, and the parental rights of "unknown John Doe".
After their rights have been formally terminated, we can begin our finalization proceedings. Our adoption agency thinks that the whole process, from Maria's birth date until our finalization will a take a year, at least.
So when can we have Maria baptized???? Well, Fr. Chris, keep your phone turned on over there in "Cannon Law Land", and for the rest of you...stay tuned!
Our little Maria is quickly turning into our big Maria. Last night she gained 70 grams!!! She's almost at four pounds!Last night Joe fed her the bottle, and she took 9 cc's of it. This morning Joe fed her another bottle, and she took 11cc's! We are so proud and amazed at her recent progress.We are truly humbled and grateful for her good health and progress. Thank God!
She also needs to have her tummy time to stregthen her core muscles.
Every baby does, I know. But before we left the hospital, Dr. Gilmour showed us some muscle tightness that Maria has due to prematurity. This tightness is normal for preemies, and should go away unless it's Cerebral Palsey (CP), which we won't know for sure until she's around 2 years old. She has some type of hyper extension in her feet, legs back and neck. Dr. Gilmour showed us some exercises to do, and recommended a...wait...my dear big brother Dave, skip the rest of this sentence...the Dr. recommeded a baby massage for Maria! Maria really enjoys the messages. Dr. Gilmour also said "no johnny jumpers and exer-saucers". This instruction was like music to Joe's ears because he and I had debated whether these devices were good for babies or not. Joe said "no" because they discourage core strengthening. I can be wrong once a year, so I didn't mind taking the brief hit.
