Monday, August 30, 2010

What Plan?

Natalie had a busy weekend.

Thursday night was the big extubation which led to her coding. A few hours later, Natalie self extubated again but this time her nurse was right next to her so things went very smoothly. They increased the size of her ET tube to 4.5 and thought "that should hold her." Ha! Saturday night she coughed it out AGAIN. Three self extubations in three days.

In addition to all that, it took from early Saturday morning to Sunday afternoon to get a good ND tube placement so she could eat again. They wanted to give her a day off after "the incident" and she ended up with several days off. They are slowly increasing her feeds because now they are afraid of her (this is according to her nurse).

Despite coughing out her tube Natalie is doing well. On Saturday her rate was decreased to 55 breaths per minute, Sunday down to 50 and then this morning to 45. She has not had such low rates in ages. The last week or two before she went back on the HFOV she was at 60bpm and since coming back to the conventional vent she remained at 60bpm. That is actually the highest setting possible so seeing her come down a bit is wonderful.

To sum up, since last week her vent setting was changed to a less invasive mode (pressure control/pressure support), her PEEP was reduced from 8 to 6 and her rate from 60 to 45. All while having stellar blood gases. Not too shabby. Conversations have gone from "we don't know when we'll be able to get her to "trachable" settings to "oh, these pressures are perfectly reasonable for a baby her size." Sigh!

So last Wednesday we met with the outgoing neonatologist, the incoming one and the surgeon who did her penrose drains (Dr. Lee). Everyone was in agreement-funduplication and G-tube in 3 weeks, recovery and then trach when she was ready.

Saturday we ran into the new attending in the hallway and she said she was rethinking things.

Basically they do not want to do the fundoplication if they can get away without it as it is an involved surgery and is a significant risk/recovery. While they take the time to debate the issue, we asked that they move ahead with the trach. I absolutely do not want to have that pushed further back because of the GI surgery. The original thinking was to do the GI surgery first because if her respiratory needs go up dramatically during her recovery then they want her to still have the ET tube. That would be wonderful, but I am not keeping a tube in her throat for 2 more months just in case, especially if there is not a concrete plan in place.

Natalie has helped push that thinking along with her frequent extubations. The attending is talking with the ENT and pulmonolgy people to get their input on the tracheostomy. She feels her settings are perfectly reasonable for a trach but they have to agree.

So now we wait for a new plan. I am very much hoping the trach happens soon. I believe with all my heart that Natalie will be a much happier baby. Her favorite fellow (Yesef) said yesterday "I can not wait-then I can pick her up and carry her!" The trach is so much more stable than the ET tube. Everyone will be allowed to hold her. She can come off of sedation. She can stop gagging every time she wakes up. The list of positives goes on and on.

In non-medical news, we were able to get some good snuggles in last week. It was the first time I held her and had some measure of privacy so I actually sang to her while we rocked (mine is not a singing voice that should be busted out publicly). I sang "You are My Sunshine," "The Rainbow Connection" and an assortment of made up Natalie songs. It was one of those evenings I will never forget.

Speaking of music, Natters really likes her classical CDs. We are fairly certain she will one day be a concert pianist. I decided this week we should mix things up and add some mellow contemporary music. I can not wait for Natters to meet the Beatles!

We have not been able to hold her since Wednesday as her life has been a little too exciting to tolerate extra time out of the crib. I am itching for Steve to get home from work so I can go get my hands on my baby girl.

Natalie after the fourth and final attempt at placing an ND tube. We are looking forward to seeing her face without all the tape!

Natters swaddled and tuckered out. Yes, she has new bald patches from IVs. Some day we are going to grow her hair down her back just because we can.

Friday, August 27, 2010

She's OK

Last night Steve had been home from the hospital for about 20 minutes when the phone rang. He answered and I watched his face trying to determine just how bad the news was. Natalie had an "episode" that required hand bagging and chest compressions to come back from. This has never happened before-she frequently desats but her heart has always been reliable.

Honestly, I felt paralyzed. I wanted to curl up in a ball and scream. I asked myself what I would want if I were Natalie and the answer of course was "I would want my mommy." So I uncurled myself, tucked Annie into bed and ran to the hospital.

I had only met her nurse once before but she is very confident and exudes cheerfulness. As soon as I walked in she said "Honey I am so sorry. Sit down and let me tell you everything that happened. I was there start to finish so I saw it all."

Jennifer was scrubbing in at the start of her shift. She looked up at Natalie's monitor and her oxygen saturation was 70%. She went to her bedside to investigate and heard a cough like sound. She had just been told that Natty has a significant air leak (her tube is much smaller than her trachea) so she thought the sound was the leak. To be safe, she turned Nat towards her and did not like her color. She also had a lot of oral secretions. Suctioning did not help.

The doctors were right outside her door waiting to start evening rounds and the respiratory therapists were around the corner. It was a very fast response. They attempted hand bagging through her tube and using the vent itself to deliver extra air. She was not responding. They extubated and hand bagged with a face mask. She started to improve but not quickly enough. The fellow did about 30 seconds of chest compressions and from that point on Natalie has been stable. From Jennifer finding her to Natalie being stabilized it was at most 90 seconds (90 seconds that took about 2 years off my life).

When I arrived at the hospital her room was in shambles but Natalie herself was sleeping soundly. She made little faces at me and was very cute. Seeing her helped me finally calm down. Apparently our little wonder girl was wide awake through the entire episode and looking around at the people working on her. I imagine that was a little disconcerting to the medical team but it amuses me that Natalie has no idea the turmoil her little body creates. She was watching and trying to figure out what all the fuss was about. She tolerated the reintubation easily and the fellow assures us her vocal cords are beautiful (a miracle in itself after months of intubation).

It seems that the whole incident was a mechanical issue. Most likely Natters extubated herself by coughing. With all the secretions in her mouth and the tube being out of position she did not have much of an airway if there was one at all. Bagging through the tube did not help because the ETT was too far out of position at that point.

Her O2 needs were up last night but the chest film shows very wet lungs. If she has not had Lasix by the time I call this morning I may have a breakdown. This transition to oral diuretics is not going smoothly.

It is a blessing that Natalie's chest film does not show any breaks in her ribs. When we were told about her bones thinning they mentioned that thin bones could become an issue if she needed to be resuscitated. I did not shrug the concern off but at that time I could not imagine Natalie needing chest compressions. There is still a chance that breaks could appear as they heal but so far at least we have escaped that.

Eventually I had to come home as Annie does not have a snooze button and I am teetering along with some incredible sleep deprivation. By the time I left I did feel much better......the episode was not heart related and we were not watching another organ system begin to struggle. On the other hand, I am now terrified of her self extubating again. The nurses can not be in the same room every minute. They have to get her milk, her meds and attend to other tasks that take them away from her room.
I am SO ready for her to have a trach and leave this intubation business behind.

Driving home was a much different feeling than driving to the hospital. I am starting to feel like a perpetual Humpty Dumpty...constantly being broken and then put back together again.

Yesterday I started to write an update on where we were going from here. I talked about how nervous I was preparing for the future and looking too far ahead. An hour later I am told Natalie needed CPR.

With that in mind, I will try to focus on the immediate future.

Natalie needs two surgeries. The first one, obviouslyandpleaseletitbesoon, is the tracheostomy. The second surgery is a funduplication and placement of a G-tube.

Natalie has almost exclusively been fed through an ND tube (it runs from her nose down in to the first part of her intestines). When feedings were first established she was such a fast breather that they were worried the pressure on her stomach would cause her to reflux. Since that point we have never gone back to attempt another NG tube (nose to stomach). A baby CAN go home with an NG tube, but an ND tube is another story. Natalie will need tube feedings for some time and the G-tube will be easier on all involved, especially Natters.

The funduplication is a procedure where the upper part of the stomach is wrapped around the lower part of the esophagus and stitched into place. It prevents reflux and ultimately aspiration of stomach acid or stomach contents.

Usually a baby would go through a great deal of testing to prove that s/he has reflux and is aspirating. Aspiration for Natalie would be a disaster so the doctors do not want to take a chance. They are going to eliminate it as a potential threat.

She needs the GI surgeries eventually, but there is no rush as she is eating just fine with the ND tube. The tracheostomy does need to be done ASAP, but they prefer to do the GI surgery before the trach for multiple reasons. Months ago I asked if they could do everything at once but our hospital does not do that. Operating on a sterile site (trach) and a bacteria laden site (the gut) at the same time is not a great scenario.

Right now the plan is to go ahead with the GI surgery as soon as the surgeon has an opening in his schedule (about 2-3 weeks...sigh). He wants to schedule her on a day when he does not have another major case so he is as sharp as possible. I very much appreciate that.

This was an abrupt change in plans. Everything was in place to start steroids on Wednesday to move toward the trach. Now that will wait until she is healed from the GI surgery.

There was more to the meeting so I will finish up later.

Despite the scariness of last night, Natalie has had a stable week. People smile when they talk about her and the progress she's made. Just this week her PEEP has gone from 8 to 6. Incredible.

Wednesday, August 25, 2010

Morning News and Pictures

I knew I was due for a disappointing phone call. Natalie is OK with her oxygenation but she did not tolerate the power wean. Her CO2 was up and they had to return her to previous settings. Blah.

She is being moved from Lasix to more gentle diuretics. This was attempted a week ago and there were some bumps along the way. She needed a few extra doses of Lasix while the new drugs were building up in her system. Someone obviously has a short memory because here she is with hazy lungs on the X-ray again. Gee, I can't believe she didn't tolerate it better this time. There are also small areas of collapse, but those should reopen with changing her position. The nurse thinks she would benefit from being in a bouncy seat and sitting more upright.

They have not rounded on her yet today so no decisions have been made regarding the Lasix.

Yesterday she had her first vaccinations. I was not there because I had no idea they were doing them so soon. It broke my heart. For Natalie a few shots really is not a new experience for her, I mean the child has had cut downs and a lumbar puncture. Her foot is stuck at least once a day. I imagine in her book vaccines are small potatoes. For me it is one more thing I am not there to comfort her through. One more piece of normalcy lost. Then again, it is just vaccinations and there are many more important things going on right now. If I let myself get caught up in all the differences between parenting a healthy child and parenting a very sick one I will be too depressed to get on with things.

There is a rumor that Natalie is being presented at the fellows conference today. I knew her case was going to be presented but thought it was next month. I debated asking if we could attend but decided against it. I already know what has happened and I do not want to sit in a room while my baby is discussed in a purely clinical manner. I wish our favorite neonatalogists were going to be in town for it. This is supposed to be a meeting of the minds and some of the greatest minds will be missing.

There is another family meeting tonight. The future has a lot of unanswered questions and we are trying to fill in some blanks on where we go from here. Most of our conversations with the doctors have been going in circles. "If we do this, then this will happen, but we need this before we can do that, but if she needs whatever should it happen now or later, etc." I would write it all out here but want to spare you the frustration and will wait until some actual decisions are made.

NOW on to the good stuff.

Natalie can wear clothes again! Everything has to have snaps since we can't fit clothing over her head and the leads need opening to come out of. She also has to wear light fabrics since she overheats quickly. With that in mind Annie and I went shopping for baby sister. The nurses told me not to go crazy and she can always wear hospital shirts. Uh huh. I have been waiting and waiting to shop for my little girl. As it turns out, we ran into a NICU nurse at Carters. She was there with her mother and sister. They got into the spirit and when they found things that would work for Natters they would hold it up for me to come find. Let's just say Natalie will not be naked anytime soon.

Showing off her new jammies....she wore them less than 10 minutes before getting the pants dirty. I'll be discrete and not say how it happened.....

(Yes, Natalie's eyes are crossed in this picture. That has been happening a lot and we do not yet know the significance.)

One of her primary nurses also suggested that we bring in a Boppy. She can't have one in her current crib, but she is on the top of the waiting list for a full sized one (then she can have a mobile and crib toys!!!). The Boppy is used for positioning and letting her stay more upright. We do have one from when Annie was a baby, but it has been in our attic for a few years and I wanted one that was absolutely clean. Last night we went Boppy hunting (goodness, I am not out to endorse that company, it just happens to be what the NICU asked for) and Annie picked a cute one for her sister. She also brought hers out of storage and has been sleeping with it.

I love being able to buy things for Natalie. Any little bit of normal parenting is such a thrill for us. When I was pregnant with Annie a friend sent a Boppy as a gift. It was the very first baby item we had in our house and I kept walking by to stare at it. A baby was coming! Now I look at Natter's Boppy and think of how proud I will feel carrying it into the NICU. Natty needing normal baby gear. I have such gratitude for the little things. Even Steve gets caught up. He is normally the voice of reason in these matters but last night he encouraged me to spend a ridiculous amount of money on muslin blankets for her. They allow swaddling without overheating, so there is my justification.

I also get to hunt down some toys for her now. She still has her loyal giraffe Sophie (one nurse is obsessive about always keeping it the corner by Nat's face. She thinks it brings good luck and who can dispute her? Sophie is Natalie's little mascot.). Other than that her crib is pretty bare. Natalie has never been awake enough to notice and her bed had to be kept clear for medical reasons. Off the oscillator she can wake up and they can lighten up.

The NICU does not allow plush toys because of health concerns but I am determined to find cute all plastic toys. Based on Natalie's new favorite plaything I don't think she will mind.

Nat is constantly reaching for her ET tube. Did I tell you about the day her nurse was working with the other baby and the father happened to be looking over at Nat? He asked if Natalie was allowed to pull on her tube and the nurse said "NO!" and ran over just in time. I think part of Natalie's ET tube obsession is that she has a sense it is annoying her and wants it out. The other side is that she is a baby and all babies bring their hands to their mouths. When she is content and reaching for her tube I think it is just her normal exploration but still too dangerous to be allowed.

Whatever her intention, we have to discourage her from touching the tube. Sometimes the tube itself is covered and sometimes her arm is weighted down slightly with one of those positional frogs.

A few days ago Natters would not settle down and kept trying to hold her ET tube. Her nurse had a genius idea and make a loop from a length of plastic tubing. Natalie immediately relaxed, held tight to her tubing a fell soundly asleep. Nurses keep throwing it away on the poor baby so the next one will have to be labeled in some way.

She loves that thing. I may skip Toys R Us and head to a medical supply company.

That nurse who created the tubing toy also gave Natalie a milk treat. She put a little milk in a syringe (no needle obviously) and put a few drops on her tongue. It is not enough to worry about swallowing but it gives her a taste. Natalie was very interested. The nurse then put a few drops on her lip and when Natalie would stick her tongue out her eyebrow would shoot up in surprise. The idea is to give her some pleasant associations with her mouth since so far her life has taught her that nothing good comes from having your mouth touched.

My goal for the day is to focus on Anneliese and relax about the morning setbacks. I need to do a better job of managing the stress and anxiety of our life so that Annie has more time with her "normal" mommy. Right now she is wearing my nursing cover and pretending to be a waitress. That is a fine way to spend the morning.

Hoping to have a plan to update you with tonight!

Tuesday, August 24, 2010

Quick Update

I have about a million things to say but will keep it to a brief medical update so everyone is up to date. I will try to come back later with pictures and stories of all the cute things Ms. Natalie has been up to.

Natalie had a lot of difficulty with IVs over the weekend so they restarted her feeds a day early. She is now on nearly full feeds and tolerating it well. The docs added Reglan to help with stomach motility. I can say she is certainly pooping like it is her job and hope that continues to be the case. No one has a good reason for why her stomach continued to act up so all we can do is hope that the issue is resolved.

We have been able to hold her several times now although they limit it to once a day. It is awesome! Oh my goodness, she is a little snuggle bug.

As for other medical news, she had her echo yesterday but no official report yet. The good news is the cardiologists have not tracked down the neonatologist in a panic, so I am somewhat certain that things at least have not become critical.

Dr. Amin is waiting for the results of the echo to make any further decisions regarding medications. We had really built up Monday in our mind as a day that plans would be finalized but we remain in a state of waiting. There are a lot of decisions to be made over the next few weeks and it is intense when we try to imagine the big picture.

Natalie had been up in her Os over the weekend until she had her special nurse Kathy. When I called Sunday night I asked if she was still in the 50's and Kathy said "no!" I braced myself to hear 60's only to find that she was at an incredible 38%. I do not know what Kathy does differently but Natalie certainly responds to it. Since then she has been pretty happy in the low 40's.

She has been stable yesterday and today. Natalie continues to have better blood gases on this vent. Yesterday they switched her vent mode to Pressure Control/Pressure Support. This lets Natalie do more of the work on breaths she takes above the set rate (which is still a very high 60/min). This morning her CO2 was low enough for a wean so her total pressure went down by one (from 24 to 23, also a high setting). As my niece would say "woot!" This is the first real wean she has had and we are keeping everything crossed that she tolerates it well.

I reminded them today that she has yet to have any vaccines and the plan is to start giving her any that are not live vaccines. We are heading into cold/flu season and there are not enough words for the fear that puts in my heart. A simple cold could be fatal for Natalie, let alone actual influenza. She is not old enough for the flu vaccine but I feel better about her having protection from whatever vaccines she is eligible for.

This morning her nurse asked occupational therapy to make splints for her feet. Natalie is actually stable enough for people to even think about her feet. That is incredible.

Natters is holding her own and doing well. Three of her daytime primary nurses stopped in today and all wore a happy smile. I think that means more than any of the numbers.

Friday, August 20, 2010

In Mommy's Arms

The last time I held Natalie it was June. I can not really let that sink in as it is too depressing. Today when she was placed in my arms I realized "We have a baby!" We've been deprived of real physical contact with her for so long now that it is easy to forget that really she is still a little baby girl. It was bliss to just cradle her and not think about blood gases or what our plan is. We were just the two of us again. Towards the end she woke up and I wish Steve had still been there with the camera. The look on her face was priceless. Waking up to find herself being held and Mommy's face so close to hers was clearly confusing.

Note...To save on typing, I will now call the oscillator HFOV (high frequency oscillating vent) and the conventional vent will just be "vent."

Last night Steve went back to the hospital and Natty was stressed out. When she becomes aware of her ET tube she gags and finds it hard to settle down. When he left her O2 was at 70%. We knew going back to the vent would most likely mean an increase in her oxygen needs and tried to brush it off. When I called for the goodnight check her night nurse had done a breathing treatment of sorts and brought out a lot of secretions. In the first hour and a half of her shift she brought Natalie from 70% down to 38% (just one reason we love Kathy). I was so thrilled I could not sleep for hours. This is as low as she had been in about a week or more.

At 6AM the phone rang. I assumed it was news about the GI films but no, it was her nurse calling to brag about her CO2. After over a week of being in the 70's every morning she had a very nice 62%. Kathy was so thrilled she wanted to call and give us some good news for a change. What a lovely way to start the day!

She spent the night between 38-42% O2 and remained there for most of the morning. By the time we arrived in the late afternoon she was up in her Os and has been a bit ever since. The lowest she has been tonight is 49%, but that is not too shabby. She is also on half the Lasix that she used to be so all in all it is amazing how well she has done.

The radiologists have not found anything of note on her films. This is incredible, as the surgery to correct strictures is involved and she would not be stable enough for it for quite some time. The doctor was pleased and planned on restarting feeds. Well, just in time she kicked out some bilious discharge. This is a sign that her stomach contents are not moving through as they should. Feeding was suspended and she was given another replogle tube and placed back on suction. They are going to repeat X-rays over the weekend and watch until the barium has completely cleared. If things are better by Monday she may start small feedings then.

They have no idea why her GI tract is acting up. There was a lot of sighing while we were discussing it. The good news is her belly is soft, her girth is down, she has great bowel sounds, she is a tooting machine and FINALLY is pooping without suppositories. That is a lot of good all things considered.

We had some complicated conversations about where we go from here. What we know so far is that she will get her echo on Monday. It is a few days early but he wants to know where the pulmonary hypertension is before he proceeds. It is frustrating that she can not have Viagra while she is NPO. There is not an IV formulation available. The echo was supposed to help evaluate the effectiveness of the Viagra but now she will have been off of it for days by the time of the test. Hopefully the PH is stable or improved and we can start to go down on her iNO.

Most likely we will do a round of steroids next week to try to get her vent settings down. After that, there are a lot of unanswered questions. I think we need to get about 5 specialists in a room together to formulate a longer term plan.

Today I had a doctor's appointment for myself. Most of the appointment was updating her on Nat's status. I had not been in since before Natalie developed NEC, so there was a lot to cover. My doctor's eyes were huge and she said several times "This child wants to live!" Indeed.

Natalie waking up post vent change. She was looking everywhere trying to figure out what had changed. Her left eye is puffy from being in that position for a bit. The lower eye tends to get positional edema.

Natalie sleeping through the excitement and wiggling her toes. Her club foot (on the right) has straightened out quite a bit on its own.

Natalie's room yesterday just after the change. The HFOV was finally silent and the lights are off! It is now removed from her room and no longer waiting "just in case." The glass partition is closed again so we have more privacy.

Thursday, August 19, 2010

Nothing Ventured

This was a very big day, and I have a lot to say but will condense it as I am about to crash.

To back up a little, on Monday morning Natalie had a repeat X-ray and although there was no improvement the doctor decided to resume her at full feeds. He wanted to avoid her needing IV access and felt that her stomach issues were most likely due to a stomach virus or some other illness.

After returning to feeding we anxiously watched her girth measurements. She seemed to be tolerating everything well but needed glycerin shaves to help in the pooping department. This has never been an issue for her so we were a little nervous.

Meanwhile, her O2 requirements were still up and her CO2 was climbing. We started discussing using steroids sooner than later as she seemed to have hit a wall.

Last night (Wednesday) I called around 10PM and the nurse said her girth was up a little. They ordered a shave hoping that a BM would clear things up. I asked for them to call us if anything changed with her stomach.

At 3:30 this morning I was still awake in bed when the phone rang. I can not put into words what an awful sinking feeling that is. We both immediately shouted obscenities (I think even my mother will forgive me this). Steve answered but I did not have to hear the doctor to know. Her stomach was distended again and the X-ray showed enlarged loops of bowel. They moved all her meds back to IV and she was NPO (nothing by mouth). So much for sleep. I spent the rest of the night trying to keep my own stomach calm.

This morning we met with her doctor. He felt that she needed an upper GI to rule out strictures. It made no sense to keep trying her on feeds only to take her back off.

The catch? The first part of the test must be done in radiology and she can not be transported on an oscillator.

We were given two choices-switch her to conventional for a few hours and see if they could stabilize her long enough for the move. The second choice was wait until next week when the steroids had taken effect and she would have a better chance on the conventional.

We decided to go ahead and try today thinking that the worst that would happen was she would have to be put right back on the oscillator. Really they felt she may not even last 15 minutes on it, but there was little risk of her losing ground.

Luckily Steve was able to be there for the vent change so we could hold hands and support each other. It was an incredibly tense situation and we were both anxious to the point of nausea. I gave Natalie the same pep talk I have given her since she was a little fetus and a kiss for good luck. Then we stood by helplessly.

How did Natalie feel? Well, she slept right through it. She wiggled her toes and had hiccups. We watched in disbelief as her O2 settings went from 100% to 60%, then 50% and eventually 40%. Clearly she could oxygenate on the conventional, but the real test would be her first blood gas.

Earlier in the day she had an arterial blood gas so they could get a better idea of her respiratory status. An arterial stick is risky so she rarely has one. This morning her ABG CO2 was 74 while on the oscillator. This is well above where it should be.

Her first CO2 post vent change? 58. That is a capillary sample, so it is expected to be higher than an arterial stick. I told her she was ventilating with finesse.

This was not the first time a blood gas has brought me to tears. After that the mood in her room was giddy. Natalie herself got into the spirit. She woke up and was clearly confused by the change. What happened to the noise? Why wasn't she shaking? It was precious watching her wake up and see her little eyes trying to figure out what was going on.

From that point Natty was wide awake and curious for about 4 hours straight. This despite multiple attempts to sedate her. Position changes are a whole new game. It is as if we went from walking on a tightrope for months to walking on solid ground. She can be held upright. It no longer takes 3 people to flip her over and suctioning is not a 2 person task. She does not have to face in only one direction (looking at that beastly oscillator).The nurse sat her up and she moved her head from side to side to look around the room. Natters kicked and waved her arms. She was delightful. I felt like I had a baby, not a sick child. Yes, she is on a vent and has an ET tube. Yes, instead of a bow in her hair she is wearing an IV on the top of her head. Moving her through the hospital required hours of planning and preparation. Being on the oscillator for so long has changed my perspective so that all those obvious signs of illness were just normal to me. Walking her through the hospital I felt the pride and protectiveness of any mother taking her child out in a stroller for the first time. This is where we are in life and this is our new normal.

Today Natalie left the 3rd floor of Strong Memorial for the first time since her birth. It is the only time she has left the NICU since she entered it on April 21st. Her eyes blinked in the bright light but she did not close them. She looked around and made eyes at people passing by. One woman said she wanted to pick her up and bring her home (I don't blame her-Natalie really is a beautiful baby).

We made an interesting scene. It took six adults to get this little baby down to radiology. She rode in her crib while the iNO tank and vent had to be pushed close by and everyone had to maintain the same pace. The vent was actually disconnected and they used the neo-puff (instead of hand bagging) while she was on the go. Natalie tolerated it very well.

The procedure itself went smoothly and Nat was not bothered. The nurse said she seemed to enjoy being moved from side to side. We managed to get her back to her room without any excitement. Luckily all the emergencies that were carefully planned for never took place.

Coordinating the move was an all day event. By the time she was back it was 4 in the afternoon and she was still wide awake. I imagine she will sleep well tonight.

Since she has tolerated the vent change so well Natalie will remain on the conventional overnight(!). We are hopeful that she can continue to do well and will not need to return to the oscillator (this return would be temporary...steroids are still in the plan for next week).

It was a crazy day. From the phone call to the first meeting with the doctor we were devastated. That quickly turned into euphoria when she did well on the vent. I had to remind myself that this was all because she may have strictures and that is no happy thing. Well, I take success where I can find it. She could have done poorly on the vent and still had strictures.

As for her intestines, so far the X-rays have not shown anything concerning. She will have another film around midnight and then again in the morning. We should have a final answer by tomorrow night. Honestly I will not be surprised if they find an issue but we are trying to not get ahead of ourselves.

She has gone up a bit in her Os this evening but that was expected. Her last blood gas was also not as good, but she had a very eventful day. She is also on half the dose of Lasix as she is used to, so that may be contributing to her respiratory status. Right now we are bracing ourselves as we tend to when something goes well.

OK. I slept for about one hour last night and fell as though I have been put through a rock tumbler. I need to rest up for tomorrow........if Natalie is still stable I get to hold her!!!!!!!!

Please keep good thoughts and prayers for our super girl. She never fails to amaze me.

Sunday, August 15, 2010

Fever Update

I spent a fitful night waiting for the doctor to call back. She didn't have test results until 3AM and decided not to wake us.

The CBC shows no signs of infection. Her CRP is only 2, which is the lowest it has been in her entire life. Nothing has come back yet from the cultures.

Her temp returned to normal fairly quickly (although she did have some Tylenol to help out. Imagine that-Tylenol. It is funny to think of her having such a normal medication). She did not have any other signs of sickness-her perfusion was good and she seemed comfortable.

I had asked when they called if she was still bundled up. When I visited she was wrapped in a flannel swaddler. I had mentioned to the nurse that she probably would not tolerate it long because she gets warm easily. She was still swaddled when her temp first went up, but they unwrapped her for 15 minutes and took it again. The doctor assured me that the temp was too high to be just from bundling.

The neonatologist thinks maybe there were some localized bacteria that were released when the PCS line was removed and her body had an dramatic response to them.

Whatever the cause, her temp has remained normal today. The CBC and CRP will be repeated tomorrow. If they are still normal then the antibiotics will be discontinued.

Her O2 requirements are a little better than yesterday, but still not as good as they had been. She is high 40's to low 50's. Yesterday she spent a long time in the low 60's, so this is better.

The doctor lowered her MAP to 15 yesterday, so in a way it is remarkable that her oxygen requirements have not gone up.

Her CO2 has been climbing for 3 days now. If things do not improve soon we may be looking at steroids to try to give her a boost. We were hoping to avoid them due to our previous experience, but it may be the way things are.

Edited to add: Steve was visiting Natalie this afternoon and her stomach looked distended. They can't rule out strictures forming from the NEC, but they think it is highly unlikely. Her bowels are probably slowing down in response to an infection. Her feeds are being held overnight and they will do a repeat X-Ray in the morning. They are also doing stool cultures just in case. He says she looks a little pale and her perfusion is a little slow. Amazing how quickly things change. Steve also said when she woke up she was very alert and waving her arms and legs. That used to require a big increase in her O2 needs but today she held her own.

Saturday, August 14, 2010


I am going to write a quick update, because if I don't I will fall way behind and it will be too much to catch up on.

Natalie has been slowly creeping up in her O's. She went for 30-40's to 40-50's. It was a very slow progression and not overly alarming (to the doctors). We were worried but trying to ride it out in hopes of it being a normal bump in the road. On Thursday she had an incredible blood gas (CO2 in the 40's!) and they went down by 0.2 rather than the usual 0.1. This brought her power to 3.1 and she has been held there since Thursday. Her CO2 after the change has only been acceptable.

Today when I called in the morning I mentioned our concerns to the nurse. When I arrived at the hospital her O2 was 59% so when the attending (his first day on rotation) came in to update me I mentioned my worries to him. A short bit after he left our favorite fellow, Yesef, came by to take out her PCS line. I bugged him and he decided to replace her ET tube. She was last reintubated on July 27th so it was getting old, especially by Natalie's standards.

The tube was actually in decent shape, a minor disappointment for me. I was hoping to attribute her recent issues to a very coated tube. The X-ray to check tube placement showed her lungs to be a little wet. He was going to order an extra dose of Lasix until I said she had just received her normal dose just a half hour prior. They decided to wait until midnight and see what her O2 requirement was then.

Time flies in the NICU. I had brought in a cooler of milk only to find that their freezer was down and they could not take it. I debated going right back home to get it back in our freezer but I did not want to leave before I harassed enough doctors. Soon hours had passed and I needed to get home to Anneliese. We had promised her a trip to the park and I had the car seat. It is so hard having two children under separate roofs. Luckily the milk survived being in the cooler so long and did not defrost much. It would have been hours and hours of pumping lost (nursing mothers will understand this).

I called around 9:30 tonight and her O2 was down to 50%. She had been resting comfortably all day.

At 11:00PM the phone rang. U of R. I answered with the vain hope that it was a request for more milk. No. It was her doctor. Natalie has a fever, and a pretty high one. She went a whole 6 hours without needing venous access. They are running a CRP and CBC. They are culturing her blood and urine, and since I reminded them her tube is brand new they are also doing a trach aspirate. In the meantime, it is back on the vanco and gent.

It is an odd thing to have a doctor call to tell you your child has a fever. I am supposed to be calling her pediatrician to let them know, not the other way around. We are living in such a strange world right now. we hope that this has been brewing for a few days and the reason her O2 is creeping up.

I will update when I know more.

On a side note, Annie came in to visit Natters on Wednesday. It was very sweet. Annie gets so excited over Natalie's cuteness gushes quite a bit. While Annie was watching Natalie started to squirm and make faces. This stunned big sister, who said "She's moving! Why is she moving?!" Ha! I think up until that point she had only seen her sleeping soundly. I don't think she realized she was capable of moving.

Tuesday, August 10, 2010

Tortoises are Smart

Slow and steady, with a dash of Viagra, seems to be a good plan so far. It certainly is going better than when her vent settings were being tweaked several times a day.

Most mornings Natalie's blood gases have been weanable so she is now down to 3.4 on the power. Ideally they want her in the 2's before she moves to the conventional vent. I was looking at a text I sent to Stephen last Thursday and she was just down to 3.8. Nice, slow steady progress. They will only reduce by 0.1 at a time because they want to be as gentle as possible.

Her O2 requirements have been trending down as well. Sunday during our visit we both basked in Natalie requiring only 36% O2 while saturating in the low 90's. All that while being on her back-her least favorite position. The doctor was very happy but feels the improvements are a coincidence and not due to the Viagra. We feel that it has been making a difference, just slow and not dramatic. In general she has been in the 40's but dips into the 30's more and more. Late last week nurses would say that they got her to 38% for 40 minutes. Now it is not uncommon for her to be at 37% for hours at a time. Last night she was in the 50's and we were getting concerned but by the time I arrived there this morning she had sorted herself out and was back in the 40's. That was a huge relief for me...I am hooked on her lower numbers and have a harder time emotionally when her requirements go up. It is paralyzing to not know when things are a blip or the start of a downward trend. Hmmmm....that paragraph has a lot of numbers. Such is how I evaluate my life right now. If I can someday say she is in the 20's I will write the entire post with exclamation points and smiley faces. It will be like a million Christmases.

Her next echocardiogram is scheduled for August 25. That is the birthday of one of my top favorite nephews, so I am hoping it is a good omen. In the meantime they are planning some minuscule nitric oxide weans. They went from 16ppm all the way down to 15ppm and plan on holding her there for a few days before attempting another wean. It is a different approach than usual-the original goal was to go down 20% every 3-4 days. I think all the plans for nitric were tossed out when she developed NEC. Certainly no one thought she would be on it as long as she has been.

The echo is for monitoring the pulmonary hypertension. Hopefully it will show improvement or at least no change for the worse.

Yesterday she had great adventures with her ND tube. It managed to retreat from her intestines back into her stomach. Her stomach then quickly filled with milk and she became agitated. Luckily the nurse was on the ball and figured out the problem quickly. The milk was aspirated and they replaced the ND tube. The placement was confirmed by X-ray and they restarted feeds. After a short time the line was no longer working when the nurse tried to give her meds through it. Another look at the X-ray and there was an obvious kink that was missed. While the nurse was trying to adjust it the tube sprang a hole and splattered Natty, the nurse and the bedding. Oh, the life of a nurse. I can only imagine the joy of having another woman's breast milk shot at you from a hole in a baby's nasal tube. I hope she is paid well. Again, it was a lucky thing that the hole was found and that it was outside her body. That would have been a disaster if she had a leak on the inside.

By this point Natter's belly was full of air from tubes being placed and manipulated so her girth was up 3 cm. They held off on replacing it until she moved the gas out ( Or as one nurse cleverly says-shooting bunnies. I think the medical term is tooting.). Now that many of her meds are through the ND tube I was anxious for it to be replaced. If the next attempt failed they were going to wait for the morning so the gastroenterologists could take a look. In the end, she did have a working ND tube by the end of the day and only some of her meds were a little late. I had just been thinking that she went at least 6 days without an X-ray, which is a record for her. Then in one day she had at least 3 to get the ND tube replaced.

Her hair continues to grow at an incredible rate. She may have a ponytail by the time she graduates from the NICU. It looks darker now and I am placing my bets on her being a brunette. I knew Natalie was a dark haired name.

Monday as we were driving into the hospital Annie asked me if this was the "hopsibul" I used to live in. I told her yes and she said "that was sad." We ended up taking the green elevators as there was a big back up at the red ones. I usually avoid the green as they open right at 3-1200, the floor I was incarcerated on. I peeked in the glass doors and saw one of our favorite nurses so I decided it was time to revisit the unit. It was a little weird-sort of like going back to your old high school. Things looked somehow different. The walk from my old room to the nurses station is about half the length I remember. I imagine every walk seemed longer than it was when I was trying to not cause more leakage or set off contractions. I joke about having post traumatic stress disorder from the pregnancy, but really it is an unsettling feeling to go back there.

Seeing the nurses, however, is always wonderful. I sometimes cross paths with them in the NICU, but not nearly enough. I frequently wish that we could have taken our favorites right along with us and they could care for Natalie now. I can not say enough about how those women saved me during those difficult weeks of bed rest and they will always have a special place in my heart.

Annie was shy for our visit to 3-1200, but as soon as we walked out the door she came to life. "Hey that's where I used to get snacks (pointing to vending machine)...remember Mama? And that's where we went on wheelchair rides and I used to look at the tiny babies. They were sooo cute and tiny. And we used to get crackers and feed them to the birds and you sat on the bench and watched. Remember Mommy? We used to feed the birdies outside sometimes." I am so grateful that as much as she remembers it as a sad time, as much as she reminds me daily that I used to not be able to pick her up, she also remembers the good things. She still loves her favorite nurses from 3-1200 and she continues to form new friendships in the NICU.

Speaking of Annie, it is late and she just woke up. I'll go tend to her and ask that you forgive typos and anything that plain just doesn't make sense. Right now we are very grateful for every stable day that Natalie has and we of course thank you for your thoughts and prayers.

Thursday, August 5, 2010

Be the Tortoise

Yesterday we arrived for our meeting to find that no one knew why we were meeting. The social worker had dropped off the note Tuesday and we thought the doctors asked for it, while the docs thought it was at our request. It worked out well, though, as we were going around in circles regarding our decisions and wanted to clarify some things with them. On Monday we felt confident leaving her on the oscillator. By our visit on Tuesday we were no longer so certain. Seeing her in that position is incredibly difficult and we do not want to keep her there any longer than necessary.

We took the same seats we had on Friday but the tone was much lighter. Since Friday Natalie had come down on her power and her O2 requirements. In general I would say we were all more optimistic.

After much thought and debate, we went into the discussion knowing that we do not want to leave Natalie on the oscillator indefinitely. We both felt more comfortable setting a time limit and agreed on 2-4 weeks. If the doctors felt Nat could make significant progress in that period of time, we would accept the drawbacks of the oscillator and plan on making the move in about a month. If 2-4 weeks will not give her much chance to improve then we would prepare to move her to the conventional vent now. As for going back to the oscillator if the settings are too high we are undecided. This is very hard to set in print, but in our hearts we feel that putting her back on the oscillator would not be in her best interest. I am not up to elaborating now, but it is a decision that is weighing heavy on our hearts. Life on the oscillator is just not fair for the long term, especially if she is not going to improve on it.

Many of our questions yesterday were the same things we asked on Friday, and most still had no answer other than "we are in uncharted territory." I give the doctors a lot of credit for sitting with us as we mulled things over again and again.

Ultimately, we have decided to hold still for now. She started the Viagra yesterday and it will be some time before we know if it is helping. No one wants to use the bigger drugs if we can get away without them. The neonatologist who has worked with Natty the most feels she can improve in a month and advised us to be patient. As Natalie's clinical status tends to fluctuate we will reevaluate as necessary. In 2-3 weeks she will have another echo to see if the Viagra is helping. If not then we will discuss Flolan or Iloprost. We did learn that the adult ICU has experience nebulizing Flolan and would be able to help the NICU set it up for us if necessary.

At the moment she is "up in her Os" a bit but that could just be one of her normal fluctuations. After a few solid good days we are anxious about any change in her status.

We are hopeful that Natalie will remain stable in the next month and make slow steady progress. Well, we would be thrilled with leaps and bounds of improvement but of course are realistic. Please be optimistic with us that Natalie will be in a better position next month to make the move to a conventional vent. Everyone involved wants to give her the very best possible chance to take off and fly on it. We do feel that we have made the best choice possible at this time.

In other Natter news, her feeds continue to go well and her diapers continue to offend. I am looking forward to when her stools return to normal. It seems there is still some nastiness to flush out. Assuming her feeds are still increased at the current rate she will be of the TPN (IV nutrition) tomorrow night. Whooop! I lost count of how many times we have celebrated her taking this step (oh, how naive I was the first time she came off and I assumed it was for good).

We are very nervous about the start of fortifying her feeds and I am sure her doctors are hoping we give the topic a rest. We have no choice but to fortify-she can't handle the amount of fluid she would need to get all her daily calories and nutrients. More importantly the formula provides additional minerals such as calcium. Natalie is facing some significant issues with demineralization of her bones. They are no longer bright white on X-ray (this was new information to us this week). She lost out the 3rd trimester of pregnancy, when babies receive the most amount of calcium from their mothers. She has spent a good amount of time on TPN and it does not provide adequate calcium and phosphorus because it would make the solution chalky. The third and biggest strike is that she is on a good amount of Lasix and will be for the foreseeable future. Lasix is necessary to control the fluid in her lungs but it also leeches calcium from her bones. Like so many treatments in the NICU, Lasix gives with one hand and takes with the other. Again, we do what we have no choice but to do now and will deal with the consequences when they arise.

Hopefully they can strike a good balance with her nutrition and will exercise more caution as they increase fortification. It makes us nervous as her NEC coincided with the big calorie push. While we don't know for certain that it caused the NEC we also don't know that it did not. I want to stress that I do not feel the doctors increased her calories in error as she had tolerated her feeds all along. She was well past the risky age for NEC and they had no reason to believe the fortification would be a problem. That said, I have no interest in tempting fate again.

Otherwise there is not much new (knocking on wood). Some of her IV meds are gradually being transferred to oral versions. This reduces the number of times her PCS line is accessed. Every med she receives through the medi-port requires a long sterile procedure and increases the risk of her line becoming infected. I can not stress how important it is that we do not lose her line. A double lumen PCS line is a great blessing and we are unlikely to get one again. No one wants to see Natalie endure another cut down procedure to secure a new line.

Annie is doing well. We are still working on getting her a better sleeping schedule, but like everything else it is a work in progress. Last night I commented that she had circles under her eyes and she said "That's OK. They're just circles and circles don't hurt." She is going to bed with much less anxiety and tends to sleep all night in her own bed, so there has been improvement. Annie is talking more and more about being a big sister. She still plans on teaching Matawee to walk, talk and not be afraid of bugs. The last one should be interesting as Anneliese herself is afraid of even the tiniest ant. She also guesses that Natalie's new hair is going to come in blue. Considering all her meds I would not be surprised.

Today I realized that it is August and Annie's bathing suit still had the tag on it. This poor child has not had the summer I intended for her. I finally got her in the suit and we used her sprinkler for the first time. It was wonderful to watch her play and have normal fun.

Steve and I were able to meet for lunch today (thank you Grandpa for the extra babysitting). This is the 7 year anniversary of our first date (thank you a million times over to Carole for the introduction:o) and we actually remembered to acknowledge it. Life of course does not allow for much more romance than going to Moes for burritos but I will take what I can get.

Annie is finally over her cold and can resume visits to the NICU sibling watch program. We owe a huge debt of gratitude to Steve's mother for being our on-call daycare the past few weeks. Thank you thank you thank you!!! I know getting last minute calls and later than anticipated pick-ups is, um, less than ideal and we appreciate you putting up with us. Annie has enjoyed all the bonus Grandma time and of course the pop-uh-sicles.

As always, thank you all for your words of encouragement and your prayers. This is a difficult time in ways I can not express and you really do help to lift us up. Thank you.

Look at these girls-am I not one lucky woman? I can not believe we made them. I want so very much to watch them grow up together. If we do get that opportunity....well there are not enough words for that emotion either.

Tuesday, August 3, 2010

A Hundred Days of NICU...hoping for no end in sight.

I have been trying to clarify things in my head so that I know how to update everyone on Natalie. I will do my best to share but need to simplify some of the medical decisions or risk a two hour post.

Thursday the neonatologist did meet with the pulmonologist. She also received an initial report from the doctor at CHOP who is reviewing Natalie's case. The three key issues she is facing are slight pulmonary hypoplasia (from the low amniotic fluid), bronchopulmonary dysplasia and now pulmonary hypertension due to the BPD.

Friday we had a very late meeting with the outgoing neonatologist and the incoming one. At this point Natalie had several days of increased oxygen (up to the 80's) for no known reason. Unlike earlier in the week there were no mechanical explanations for her to be requiring more O2.

We were given several options. The first option was to do nothing and allow Natalie to stay on the oscillating vent. There is a chance that over time her vent settings could be gradually reduced to the point that a switch to the conventional vent would be more successful. The downside is this prolongs her time being heavily sedated and she is basically attached to the bed. Developmentally we have no way of knowing how this is impacting her. In addition to all that, as long as her O2 requirements are high her lungs are being damaged by exposure to high concentrations of O2 and the chances of them improving are greatly reduced.

The second option was to optimize her chances of a successful wean to the conventional by using steroids and some experimental medications. The main risk of the steroids is immunosuppression and her developing another infection (this is what happened last time on steroids). The risks of the experimental drugs are primarily low blood pressure ( to the extent that frequently the meds must be stopped before they reach therapeutic levels), but because these meds are not approved for use in babies the real risks are unknown.

The doctor from CHOP sent a list of meds he recommends. The main objective is of the drugs is to act as a vasodilator and hopefully improve her pulmonary hypertension. One of those drugs is Flolan, an IV med used to treat severe pulmonary hypertension. Our doctor is investigating the possibility of nebulizing the Flolan so it could be directly delivered to her lungs and hopefully avoid some of the systemic side effects. Flolan is a "big gun" and we do not want to use it if we can get away without it.

The idea presented was to use these meds to give Natalie the best chance of succeeding on the conventional vent, but they would also suggest we make a commitment to not return her to the oscillator if they could not get her to reasonable vent settings. We would then let the disease run its course and offer her comfort care.

That was an extremely difficult plan to take in. At what point do you wake up and say "Yes, today I take the chance and see if my child will live or die?" We have been facing life and death decisions for so long now, and we have known for some time that Natalie is critically ill. That in no way makes these conversations any easier. She is loved and as valued as any child of ours would be and we still intend on giving her the best chance at a good outcome.

As always, there are options somewhere in the middle and that is what we are trying to sort out now.

We asked for time to think things over while they investigated the drug options.

Meanwhile, on late Saturday to early Sunday Natalie's O2 needs improved significantly. She was once again in the 40's and sometimes amazing us with high 30's. We met with the doctor yesterday and tried to form a plan. At this point we are holding off on the Flolan but they are still investigating the best way to administer it. As long as her O2 requirements remain reasonable (below 60%) we are buying some time and letting her stay on the oscillator in the near future. In place of Flolan she will be started on sildenafil, or as you may better know it, Viagra. It too acts as a vasodilator and may improve her lung function. Animal studies also suggest it may help her grow new healthy alveoli and reduce some of the negative BPD changes. It takes several days to weeks to reach maximum effectiveness, while Flolan is a much faster acting drug (within hours of starting). However, it comes with a much lower set of side effects and can be given orally. It is also a med she can take long term and even come home on. No word on if it will help her throw footballs through tire swings as the Viagra commercials suggest, but time will tell.

Many of these medications are drugs that I had researched in the past and asked the doctors to consider. At the time I was told they rarely used them and when they did it was when their backs were up against a wall. Well, here we are, our backs against that wall and hoping for the very best outcome for Natalie.

We have yet another meeting tomorrow to discuss meds and plans. It gets very complicated and is not helped by the fact that the NICU doctors themselves do not know what direction we should go. There are not hundreds of Natalies all over the US who have been studied and understood. She is writing her own book and no one knows what she really needs at this point. Steve and I also have to reach the same conclusions regarding her care so that we are moving forward on the same page.

We are trying to weigh her long term outcome, ultimate quality of life and her immediate quality of life. We are researching medications that do not have proven track records in the NICU and doing our best to make decisions that seem impossible.

I remind myself that now I have endured more life and death discussions over Nat than I can recall, although they have all left marks on my heart. We have sat in that hospital holding hands and bracing for the worst. Each time she has amazed us. She fights, she holds on, she is trying to get to the other side of this. I have been told multiple times that when babies have had too much and are ready to go that they find ways of letting their parents know. I do not have that sense from her at all. I constantly evaluate the situation she is in, because I know it is a hard, uncomfortable and sometimes painful existence that she has right now. I am not oblivious to what we are asking of her. My litmus test is thinking "Would I do this to survive? Would I be willing to fight through knowing how wonderful life can be?" As long as I can still answer "yes" than we are moving forward. I can only hope that the choices we make are the choices Natalie would choose for herself if possible. I recently told Steve that if Natalie pulls through we owe her big time and need to be the best parents possible. For all that she has endured, for all that this has taught me I feel more charged than ever with the responsibility of parenting our girls.

Right now my mind is on a constant loop of Natalie's vital signs, her vent settings and the future plans. It is a maddening place to be and has taken a toll on us emotionally. I ask that in the immediate future we are given a break from discussing the finer details of what we are deciding regarding her medical care. It is too much emotionally to sort through all the information time and again. When there is a plan in place of course we will let everyone know as soon as possible.

For parents in a similar position, reading now or in the future, I am happy to answer any questions about the treatment options we have investigated. Please feel free to contact me and I will do what I can to share what we have learned. Through this journey I have had so much help and encouragement from other parents and I hope to provide the same assistance when possible. In addition, if you are reading this and have experience using Flolan, Viagra, inhaled iloprest or tracleer in the NICU setting I would love to hear from you.

OK, so on to lighter news. Natters did several days of pedialyte and proved her intestines were ready. On Saturday she was finally allowed breast milk again. I was thrilled to be there when the order was written so I could actually go pump fresh milk. Don't ask why I was so excited. Partly because fresh is better, partly because any little thing I can do for Natalie is a wonderful thing right now.

They have been increasing her 1cc every 12 hours and she is currently at 8cc. She has had several stools (one dirty diaper I had the privilege of changing today) so on the tummy front we are pleased.

In respiratory news they have weaned her power from 4.6 to 4.0. The power correlates to her "shake" and ventilating CO2. This was done gradually over the past few days and according to her blood gases she has tolerated it well. The neonatologist was encouraged by the ability to wean the power although she has a long way to go before the settings are at a point where she can be moved to the conventional vent.

Today I was there while they were retaping her ET tube and the lights were on full power. Usually the room is very dim as Natty prefers it that way. This was the first glimpse of her in bright light that I have had in some time and I noticed she is starting to grow hair again. My sweet bald baby won't be bald for long. I am anxious to see what color it comes in. So far it seems light, so maybe another blondie? Somehow I always imagined her as a brunette, but I think that is because all the famous Natalies I know have dark hair..Merchant, Portman, Woods. Well, maybe I can only think of 3 famous Natalies but at any rate the name always seemed like a dark haired girl to me. I will be thrilled with whatever color she grows and am just curious. Nice to be curious about something that is not of vital importance.

Here are some recent pictures. It never fails to amaze me how healthy she looks on the outside. I feel like I could unhook her, pick her up and walk out the door. She is right around 9lbs now and is about to outgrow her bed. She can't move up to the real crib until she is off the oscillator, though.

She really likes this sock and frequently holds onto it.